• Tag Archives Neurotypical
  • ASPERGER’S SYNDROME AND RIGIDITY

    WHY WE SHOULD STOP APPEASING PECULIAR BEHAVIORS AND ROUTINES FOR ASPERGER HUSBAND’S

     

    My Husband’s Rigidity

    Throughout my relationship with John, one thing has always remained constant about him:  he is an intolerably moody and argumentative jerk for approximately two hours after awakening every single day. 

    John’s morning routine:

    1. Wake up
    2. Get dressed
    3. Brush teeth
    4. Make coffee and breakfast
    5. Sit down and eat/drink while occupying brain with visual distraction for 1-2 hours

    For John, the visual distraction has always been to look at his iPad (reading the news, UFC updates, researching cars, etc.) until he feels ready to begin his day.  Recently his visual distraction has included playing video games after he purchased a new XBOX car racing game that he really enjoys.  John was never a big video-game junkie once we moved in with one another (but I suspect he was when he lived alone) so it does not bother me at all when he opts to play them now.

    That morning routine is John’s thing and while it may not seem to be a big deal, sometimes inflexible behaviors like this become the catalyst for terrible fighting within an NT-Aspie union.

    It is incredibly common to find similar routine or patterned behaviors in adults with Asperger’s syndrome and almost every wife can share varying accounts of how one of her husband’s rigid routines causes her irritation or distress at some point in the relationship.  For John, the morning routine was apparent soon after we moved in with one another and also served in identifying he had Asperger’s syndrome long before I knew what it was (after a coworker identified a similar morning ritual for her Aspie child).

    Considering John thinks he “needs” his morning routine to begin his day without mental chaos, or to just wake himself up enough to clear his mind and tackle the remainder of his day, I could be willing to accept this seemingly peculiar behavior and even accommodate his unique desires.  The problem comes from the fact that if anyone else attempts to engage him during that time, or if their actions (outside of anything that has to do with him) are displeasing to his environment during this window of awakening, John responds with over-the-top and unfair behaviors.  For instance, if John is sitting at the table eating and looking at his iPad and I turn something on the television that he does not want to hear, I talk to him about anything that he is disinterested in, B plays music he can hear… or just about anything else that distracts him from his calming AM focus… John is snarky, rude, nasty, condescending, argumentative, demanding, or just plain inappropriate toward us.

    For the most part, B and I had learned to just avoid him until this two-hour time frame had elapsed because if we set him off, the rest of the day would likely fall to shit for the entire family.  If it was as simple as John desiring this time to have a good day, I would be more than happy to accept this as the norm.  It is not that simple though.  Due to his negative responses to those around him during his “Morning Me Time” I can no longer tolerate the expectation he has that we should alter our own behaviors to placate him.  John has a want that he has convinced himself is a need and he will implore whatever negative behaviors he sees fit to satisfy it.  It has now come to a point where he is going to be given no further option to continue his current behaviors and must find a way to remove himself from our vicinity to accomplish his morning rituals, or learn to modify them into something positive that does not cause his family distress in the process.

     

    Oh but… “Aspies have inflexible routines.” 

    Ummm… Yeah, SO WOULD ANYONE if acting like an intolerable jerk got people to cater to them their entire life!

     

    Oh but… “That’s just part of the disorder.” 

    Like HELL it is!  You had a child who was “different” and bewildered parents who did not comprehend WHY.  After years of frustration and not understanding what set their child into an anxiety-provoked temper tantrum, parents unintentionally allowed for these inflexible routines to both develop and flourish!

     

    The altering of my own behavior and wants to pacify John’s routine is unacceptable and it took a long time for me to have the courage to say I will no longer agree to ignore his “temper tantrums” or walk on eggshells every morning for him because I finally realize that doing so provides positive reinforcement for his negative behavior; and that does not help anyone.  The negative behaviors he displays to calm his own mind is not appropriate as a husband, father, or adult and has to change into something that is appropriate and beneficial to the family as a whole.  This is what maturity, compromise, and positive regard for one another requires from all of us; no one can be immune to taking accountability for their own actions if those actions are causing physical or emotional harm to the ones they love.

     

    How Do These Behaviors Begin in the First Place?

    We all come into this world with things that overwhelm us from our youth in regard to our environment.  There are lights, textures, noises, people, animals, places and other things in our daily world that we find upsetting, annoying, irritating, or uncomfortable.  As young children, we are not equipped with the language skills to articulate the things that bother us, so we behave in dramatic ways to express our discomfort like whining, crying, or throwing full-on temper tantrums.  Damn-near every child has similar responses to environmental stimuli that they do not readily enjoy.  Both Aspie and NT children develop in the same manner and can throw equally passionate temper tantrums when they are attempting to express their distress in something they cannot verbalize to the adults around them.  Children with Asperger’s syndrome and those deemed neurotypical do not have opposing thought-processes from birth to around three-years old.  They are children with the exact same cognitive development and it only begins to reach a fork in the road when nonverbal communication heavily outweighs the use of actual words.

    When a young NT child throws a temper tantrum to express their uneasiness with something in their environment, they learn to overcome such triggers based on the expectations of their parents.  For instance, if a neurotypical four-year old were to throw themselves on the floor in the middle of a department store in tears (because the entire process of spending long and boring durations of time in a brightly lit, loud, and incredibly stimulating environment causes them to become overwhelmed) their parent will impose authority to teach them their behavior is inappropriate and will not be tolerated.  Without realizing it, by the age of four, most of the communication coming from that parent is in the form of nonverbal communication.  The parent may make angry facial expressions or body movements for a significant amount of time to tell the child they are getting angry before they eventually say something like, “Knock it off, stop being bad and embarrassing me or you are going to be punished when you get home!”  Both the Aspie and NT child will know from the spoken words that whatever they are outwardly doing is pissing their parent off, but the Aspie may not grasp what this “embarrassment” is stemming from (they aren’t picking up on the facial expressions or body language of other shoppers in the store) and they weren’t able to pick up on their parents facial or body language that told them to stop acting a certain way long before the parent threatened them and told them they were bad.  The NT child would have observed all of these other nonverbal messages taking place around them as they escalated to the point of a temper tantrum.  The NT child will know very quickly the next time they are in a similar environment (even if it is equally overwhelming and intolerable) that they are going to get punished if they do not adapt their behavior, and they realize this the moment they begin seeing similar facial expressions or body movements from their parent or those around them.

    Eventually, the NT child will learn to adapt to such environments without feeling so overwhelmed and they will find themselves less upset when they have to enter into similar places in the future.  This is called Exposure Therapy and it is the same tactic utilized to help countless people overcome phobias every single day.  When an adult is afraid of confined spaces (claustrophobia), the psychotherapy used to help them overcome their fear is to directly expose them to it.  While the initial psychologic and emotional response will be incredibly overwhelming and unwanted for the sufferer, they will begin to adapt to each subsequent exposure with less misery.  The longer the therapy continues, the more likely they are to completely overcome this fear.  Since being an adult often requires exposure to confined places, such as being in a car, airplane, elevator, public restroom, etc. it is not conducive to living a fully-productive life if one chooses to tailor their environmental exposure to confined spaces around their claustrophobia.

    Going back to typical child development… all children have environmental stimuli or places that cause them personal distress.  Parents unknowingly provide exposure therapy throughout their development (before the child can express what is upsetting them) and the children do not know their parents are implementing this therapy any more than the parent has a clue they are utilizing it to help their child develop in a socially acceptable way.   Exposure therapy does not work the same way for the Aspie child after the age of four (my guesstimate) because they are missing all of the nonverbal communication to tell them how to behave.  By the time they are admonished for their behavior (like throwing themselves on the floor crying) by a parent, they have lost the lesson to self-regulate in the future.  Aspie children do not have the same ability to utilize this internal dialog and put themselves in check so that they can slowly begin modifying appropriate social responses (and eventually mitigate the overwhelming assault on their senses) the same way an NT child does.

    Since parents do not understand why their Aspie child is refusing to adapt to the world around them the same way an NT child would, they often become more authoritative and impose greater punishments in the hopes that this will alter their child’s future conduct.  In response to this increasing anger from their parents, the Aspie child begins to feel even more overwhelmed and their poor responses and aversions to environmental stimuli become enhanced.  When increasing authority and punishment do not work, most parents inevitably succumb to modifying their child’s environment to prevent undesirable behavior.  Sometimes they do this to diminish the overwhelming feelings they begin to personally have when faced with exposing their children to people and/or places that they often respond to poorly.  Sometimes these modifications are done to reduce their own stress or embarrassment, while other times it is done solely out of love for their child and not wanting to see them suffer or feel overwhelmed.  All of these adjustments are done to sooth stress in general and more often than not, the parents believe they are making “temporary” changes to handle their unique situation while they search for answers about what is “wrong” with their child, or a better means to help them.

    Unfortunately, the alteration of environmental stimuli to prevent unwanted behaviors or ease discomfort (for either party) only promotes the development of inflexible routines and rituals throughout the Aspies life.   While it is easier said than done (and usually happens because of a knowledge-deficit on cause and effect), the parents of those with Asperger’s syndrome should not be participating in accepting, qualifying, enhancing, providing, or appeasing these avoidant behaviors.  Doing so enables a continued resistance to change, an increased avoidance of new environmental exposures, and ultimately affords them the option to withdraw from social norms and necessary adult responsibilities and suitable conduct.   Common sense dictates that neither avoidance nor combativeness to displeasing environmental stimuli is appropriate or conducive with the executive function required of an adult.  None of these permissible actions prepares an adult Aspie for the NT adults who refuse to tolerate such rigid behaviors or negative responses that they were able to force acceptance of as children.

     

    An Aspie child who prevails in having their authority figures accommodate their negative behaviors with environmental modifications…

    becomes a demonstrative, rude, temper-tantrum-prone adult who expects the same from their intimate partner and children.

     

    What This Looks Like in My World

    Today started out fine.  I did not have to work and B was at school so both John and I slept in until 11:00 a.m.  We got up together at the same time, and I even brushed my teeth beside him (he recently commented that I never used the other sink in the double-sink bathroom).  John made snarky comments about me while he brushed his teeth (remarking that my armpits were making him gag when he was actually brushing too far back in his mouth and retching from it).  Being from a family that constantly picks at one another in jest (without ill-intentions or meaning), I take John’s comments to be light-hearted and know they are not usually meant to be hurtful.  After we brushed our teeth, John and I went into the kitchen together.

    I did not have intention of disregarding my husband’s “two-hour rule” when I walked out with him to begin our day.  I simply did not consider his typical morning ritual (as I often do) since we had been doing so well communicating with one another and expressing our feelings over the last nine months.  Today was the first morning we both woke up together in a long time, so my mood was happy and I unconsciously assumed his was as well.  Honestly, if I had thought about his morning-crankiness, I likely would have knowingly ignored it by choice today since it would have been my first experience with his morning routine in many months (I worked night shifts for a long time and was asleep before he woke up each day).  It is obviously no secret to you all that I think it is utter bullshit that anyone has to walk on glass for their husband to appease their rituals, so I felt the same about beginning my day today.

    I am a grown adult and when I wake up in a good mood, I have zero interest in allowing my grown adult husband’s behaviors to thwart the way I want to speak or move about my own home any longer.

     

    I do realize we have an incredibly long way to go before John admits to, or becomes aware of how he acts in the morning (or afternoon, if that is when he wakes up), but I am certain there is nothing to be gained by continuing to appease this nonsense just to keep the peace with him.

     

    Despite it not being purposeful today, I did not abide by this unspoken: “Two hours before I can stop tiptoeing around to avoid annoying John” law in our house.  I hate this previously accepted rule more than I can explain; it is disruptive to my normal routine and inadvertently casts a negative cloud on my mood for the rest of the day.  As it happens, my unintentional violation of this ridiculous and damaging rule for our morning interactions, spiraled into a real shit-show:

     

    Stupid Coffee Grounds!

    A while back John had a temper tantrum during an argument with me and threw our Keurig water filter at the back door and broke it.  Instead of replacing the water filter, I purchased a cheap (basic) coffee maker; one that has grounds remaining in need of disposal after each use.

    Since the first time John has used this piece of kitchen equipment, he has dumped the old grounds into the sink.  With “Make Coffee” existing as a part of his daily ritual, every single day there are coffee grounds chillin in the sink by the late afternoon.  What’s the big deal? Perhaps there isn’t one to the average person, but day after day, this has become a source of annoyance to me.  Dumping these grounds in the sink (filter and all) and allowing them to remain there long into the day, they often become someone else’s responsibility to clean.  While John does eventually clean them himself (about 50% of the time) they still remain there long enough to splash coffee water and grounds all over the sink, wall, and surrounding vicinity every time someone goes to wash their hands.

    I am a nurse and by default, my own obsessive hand washing has rubbed off on the family to the point that we wash our hands a lot (probably more than most).  This continued washing of hands and subsequent splashing of grounds everywhere but the sink, causes an incredibly impressive coffee-infused art display in places that no one else seems to notice (or clean) other than myself.

    I grew up with chronic-coffee-drinking-parents who would scold me if I ever attempted to wash the grounds down the kitchen drain in lieu of putting them in the garbage.  I clearly raised my daughter with the same belief that coffee grounds should never be put in the sink, so John’s disinterest in appeasing this disposal method equally irritates her.  Whether or not the stupid coffee grounds can safely wash down the pipes without screwing up the plumbing is not the issue at hand; the problem is that John does not attempt to rinse them away at all, he just drops the whole filter in the sink and leaves it there (until he or someone else opts to do dishes later in the evening).

    While this is a small nuisance in the grand scheme of life, it is easily remedied by simply turning the human body around and putting them in the garbage that is literally a step away from the damn coffee maker!  I have attempted to express this to John countless times, both nicely, with passionate pleas, and angry demands.  I have tried to implore logic to the situation and even agreed that it is not a big deal, but I would really love it if he would just dump them in the garbage instead.  John has not taken my requests into consideration and up until this morning, has continued to do the exact same thing he felt like doing… morning after morning, ritual after ritual.

    Since it had been a significant amount of time since I last observed this evil-deed in action, when John plopped the ground-filled filter into the sink this morning, I said, “Why do you put those in the sink? I don’t like it. Can you just throw them in the garbage instead please?”  Seemed like a nice way to put it; simple request, no hostility or accusatory words directed at him.  No anger in my voice, no judgement of his actions or threats to divorce him if he didn’t comply.  I just asked him for a rationale behind the behavior and requested he opt to do something different for my own mental-health benefit.

    What I got from John in response was typical of him when I begin to question anything that occurs during his two-hour morning process.  John replied to me with loud, annoyed, and rude words that all equated to, “Fuck you Kara, I do it because I want to and I am going to continue doing it because I want to and you’re annoying the shit out of me for even bringing it up!”   This is not what he actually said, but the gravity of his point was made with whatever words he chose to utilize to express the same sentiments.  I was not angry (although surprisingly taken aback by his response after a seemingly positive start to the day) and replied, “John, we don’t like when you do that, it’s gross.”

    Bad move on my behalf.

    Using the word “we” with my husband triggers an instant response of aggressive defensiveness as though he is being horrifically ganged up on by his wife and stepdaughter.  John highlighted my use of the word “we” as he began loudly vocalizing how he can do what he wants and defending his action as though he were a child whining about having to clean his room.  Since John is not a child, and I am not his mother, his loud and demonstrative retaliation to my simple statement was an unnecessary and inappropriate act of defiance.

    I fired back instinctively that he was being rude and that there was no reason for him to purposely do something that upsets me when it would take less effort overall to just throw the stupid grounds in the garbage.  John turned to look at the garbage can (overflowing with trash) and yelled,

    John: “I don’t like when the garbage is full either!”

    Me: “Then take it out when it is full!”

    John: “That’s not my job!!!!!!”

    Me: “It’s not my job either, it’s everyone’s job!”

    Somewhere along the way, John has decided that garbage is disgusting and he will have no part in touching it.  Due to this executive decision on his behalf, he will stack the garbage up around the lid so it is barely inside the can in order to prevent his hands from coming in contact with anything else.   While this is also an incredible irritating thing to me, I rarely say anything about it because I am aware of his aversion to handling garbage.  I have watched him yell at B when she does the same thing and demand she take it out, despite him refusing to himself (this is usually the only time I complain about what a hypocrite he is).

    After John’s garbage comment, I was finding my own self-control a little challenging.  The more he continued whining about this stupid request, the more I had to hold back from becoming angry with him.  He truly went on for 2-3 minutes in a loud, high-pitched tone ranting about the coffee grounds and garbage as though he were vehemently defending an unfair and ridiculous demand made by his dominating wife.  In an attempt to deescalate the situation, I began mocking his tone and pitch with similar sounds (“Meee meee meee, wahhh wahhh wahhh”) while smiling at him saying, “Why are you whining like that?  That is how you sound to me over something so silly.”

    Since I am still a fool and still forget that my husband cannot readily identify the nonverbal communication I am using, it did not occur to me that my words were actually pissing him off further.  He didn’t see my smile, or pick up on the body language that expressed I was not angry and was trying to ease the tension.  All John heard (in the face of his own poor behavior) was that I was making fun of him.  In a perfect example of how engaging my husband during his two-hour morning window goes bad quickly, John began to shift from a rude-whining adult man to a nasty and verbally abusive asshole.  Pissed off that I was not letting the coffee grounds issue go with his response that he would, “Do what he wants,” deciding that he was being ganged up on by my use of the word, “we,” and then assuming I was making fun of him, he unleashed a vicious attack to intimidate me into backing off:

    John: “SHUT THE FUCK UP! YOU’RE SO ANNOYING! SHUT THE FUCK UP, LEAVE ME ALONE! ALL YOU DO IS BITCH! SHUT… THE…FUCK…. UP!!!!  LEAVE ME ALONE!!!!”

    As angry as I was at his disgusting aggressiveness toward me, I opted to keep a low and non-threatening tone instead of matching his anger.  In the past, I would begin screaming back at John and the verbal exchange would lead to days of not speaking to one another.  If I didn’t immediately fire back at him, I would begin to cry and try to tell him how much his words were hurting me through pathetic sobbing.  I used to break down.  I used to cry hysterically for hours as I replayed his anger and think about how I deserved better; I would consider all of the reasons I should leave him and convince myself that staying with a man who could treat me in such a degrading way meant that I had no respect for myself.

    I never wanted to believe I had no self-respect.

    Since matching John’s anger and/or submitting to hysterics and questioning our entire relationship never accomplished anything good, and it had been a while since John came at me with such aggressively cruel words, I decided to try something different today.

                    Very calmly and directly I said, “Don’t talk to me like that.”

    John continued to be loud, aggressive, and nasty (no doubt everyone in the neighborhood could have heard him screaming).  Instead of allowing this intimidation tactic to prevail, I stood in the kitchen and continued to calmly speak through his hostility.  Each time I said something, I would break and allow for him to retaliate with anger and nastiness and then continue on with what I had to say in the same calm and direct way.

     

    Me:                “John, you have no right to talk to me like that, it is disrespectful and hurtful.  (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) I asked you to stop putting coffee grounds in the sink and instead of agreeing to try to put them in the garbage in the future, you chose to disregard what I was asking.  (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) You began to whine and defend a position that makes little sense to me and appeared to be out of sheer defiance of my request.  (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) When the whining did not make me go away, you got loud and tried to intimidate me.  (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) All this time you could have behaved like an adult… (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) You could have simply said you would stop putting the coffee grounds in the sink because I told you I did not like it.  (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) You chose to tell me you do not care how I feel about it… (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) You let me know you are going to continue doing what you want… (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) and you made it very clear that you would rather call me names and scream at me than behave like an adult who values his wife. (LONGBREAK TO ALLOW HIM TO CONTINUE YELLING) It is not ok for you to talk to me like that anymore and you cannot just attack me to make me go away from you.”

     

    Don’t get too excited, this method did not have instantaneous results!

     

    John continued yelling and calling me a nagging pain in the ass or telling me I was an annoying asshole who starts fights with him on purpose.  I am not even certain what he said because I have begun tuning out the nastiness he occasionally still spews in order to not take it personally. As John continued to yell (with a decreasing volume) I stated, “Grow up and try to act like an adult John” and began to walk away as he uttered the words, “I’m just not going to talk to you today!”

    John moved toward the sofa to drink his coffee and play video games and carry on with his morning ritual.  I went on the porch and began writing down what occurred before he could twist the events into something else and play on my poor memory to tell me he never said or did what I was upset about.  I wanted to get this experience down in writing so I could share it with you and show you how, despite an incredible change in our communication and marriage this past year, my husband and I are still met with challenges and residual behaviors that need to be corrected.

     

    So What Came of It?

    When I first sat down to write, I took a few minutes and allowed myself to feel pissed off, hurt, and deflated overall that we were still having these intense verbal exchanges with one another.  I was very frustrated that I still could not tell John something that I did not like without receiving an instant response of, “Tough shit, I don’t care” (in whatever words he used to express the same point).  I was still dumbfounded at the fact that when I did not just retreat after his dismissive reply, he would still choose to come at me with such disrespectful, verbally abusive, and terrible words.  I had to sit and think about this for a while before I was able to detach from how much it hurt me emotionally and focus on a solution to prevent it from reoccurring in the future.

    BREAKING TERRIBLE “LEARNED” BEHAVIORS IS NOT EASY PEOPLE

    Today was about disrupting a ritual of my husband’s and recognizing that his defensive guns still come out immediately on instinct when he incorrectly perceives an attack on his character.  While the cognitive empathy factor did play a role in how the dialog shifted from defensiveness to attack (as I missed that he did not see my nonverbal attempts to de-escalate the situation), cognitive empathy did not directly cause this situation to unravel (although it is the ultimate cause for his negative behaviors and rituals in the first place).

    John was being told something directly, during a time period he did not want to engage in communication with me, and behaved in a defiant, defensive, and over-the-top nasty way… he did this because this is how he naturally responds to any degree of perceived authority.  John had no reason to behave that way toward me, outside of the fact that he was being an asshole who did not want to be “told” what to do… in any fashion, for any reason, by anyone.

    It is that simple.

    This level of defiance is one thing, the completely disrespectful and degrading way he treated his wife, well that was something unacceptable and intolerable that I had to devise a plan to correct (or so I thought).

    There was not an initial misunderstanding that sparked this exchange between us, it was nothing more than John using the really shitty behavior he learned in his youth.  No level of empathy toward him after that exchange was going to override the fact that neither of us should be speaking to one another in such a demeaning and disgusting way… ever again.

    My goal as I sat down to write this post was to devise a plan to get John to acknowledge his behavior and feel embarrassed (or at least regretful) for how he spoke to his wife.  I wanted John to realize that his lack of emotional control over something so trivial caused our entire day to be ruined.  Considering I do not get many days off during the week, it was important to me that he realized the implication of his actions and subsequent loss of valuable time we could have spent enjoying one another’s company.  I also wanted John to identify that he was not being a team player and that if he expects others to listen to what bothers him and make adjustments to their actions for his benefit in the future, he would also have to begin listening to others and agree to alter some of his own actions.

    Without thinking it through, I stepped inside the house (I write on my back porch) and said aloud, “John, I am waiting for you to apologize to me.”

    This failed, as he responded, “Then you apologize to me.”  This is absolutely the typical reply I would have expected from him and if I had bet money on what he would say to me, I would have come out a big winner when he proved me correct.  Of course… that was not what I wanted him to say.  I remained quiet for a moment looking at the back of his head while he played his racing game and he loudly said, “Ok, fine. I’m Sorry!”  This would have been the very next response I could have hit the jackpot on as he had a hostile tone behind his words and I have heard that type of “non-apology” many times before.  I calmly and directly replied, “That is not an apology.”  To this I began to turn and walk back outside as I heard him angrily saying, “Then don’t demand an apology!”  He kept vocalizing something rude as I closed the door behind me and continued writing this post.

     

    This is Awesome!                

    As I began writing the first few paragraphs of this post I was mentally considering different ways I could get through to John that were different from my failed attempts in the past.  I had utilized the same attempt before (telling him I am waiting on an apology) and received the same response from him that he had just given me; a nasty non-apology and demand that I do the same.  Since this failed, I assumed I would have to be more creative and come up with something better.  I continued to write the events that transpired as my mind played out varying options.

    After about twenty minutes of typing away on my laptop, something surprising happened.  John opened the window that leads from the living room to the porch and kindly and softly said, “I am sorry I talked to you that way Kara.”  This was shocking to me because no more than an hour had passed since we had awakened and I definitely did not anticipate that he would even consider what transpired between us until his “morning routine” time frame had elapsed.  I continued to write and decided that I would try to approach the coffee-grounds topic later in the day.  About thirty minutes after his “real” apology, I went inside to get myself coffee and guess what John had done during that time?

    John threw away the coffee grounds and filter and cleaned the sink… and entire kitchen!

    John disrupted his morning routine, offered a heartfelt apology to me that told me he felt remorseful for speaking to me in a cruel and unwarranted way, and he chose to go further and make amends for his behavior by cleaning up.  He was well-into steam-cleaning the entire living room floor when I finally stepped away from my writing to engage him.  I made a point to tell him I was not going to allow the morning fight to ruin the remainder of our day.  I thanked him for cleaning the coffee grounds and told him I appreciated what he had done.

    So here’s the thing… prior to my discovery of cognitive empathy and learning to adapt my own behaviors, a morning like today would have led to days of fighting and tears.  I did not have control over my own emotional responses to my husband any more than he had control over his emotional responses.  Neither of us ever admitted to being at fault for anything, and neither of us were ever willing to budge on our own negative behaviors.

    We wanted the other person to change.

    Even after the incredible growth we have made as a couple, and even after my personal education and application of behavior modifications to prevent fighting…. I still walked away from our exchange this morning with the inappropriate desire to force John to change.  I still sat back and plotted a way to make my husband “feel sorry” and admit he was wrong, and I still believed that I had the personal power to force my will unto him.  If I had not remained outside after John apologized, or I had attempted to point out his wrong doing, or bring up the coffee grounds issue… John would NOT have made a conscious choice to modify his own behavior.

    I cannot tell you for certain (the day is not over) if John is going to repeat the same behavior tomorrow and dump those damn grounds into the sink as he carries on with his morning ritual once again.  I am willing to bet more money on the fact that he will not do that ever again, then I would have bet he was going to respond to my request for an apology the way he did.  I am willing to bet this because I am not the one who made John change his negative behavior.

    John made his own choice to accommodate my wishes because he wanted to make me happy.

                    John saw the positive outcome of his positive actions and had a wonderful day with me.  John is learning on his own that what he once thought was positive reinforcement (avoiding things that deviated from his own desires) by behaving in a negative way, are not so positive after all.

    I did not have to come up with a magic solution to force my husband into figuring out something that neurotypicals were blessed with comprehending from their childhood…

    all I had to do was stop accepting that negative behavior.

    Oh, but wait… isn’t that EXACTLY what he was not afforded in his youth that CAUSED his rigid routines in the first place? That somewhere along the lines, his loving parents and other adults began to accommodate his routines in order to avoid his negative behavior?

    Doesn’t that mean that if we (NT wives) stop doing this… stop accepting, stop appeasing, and stop ignoring the negative behavior… that we are effectively going to help teach our husbands what they should have learned as children?

    I can and will always look past my husband’s quirky behaviors, provided they are not adversely impacting my own emotions or the unity and happiness we need as a family.  If I can continue to stop feeding into his reactions with equal or surmounting negativity, then I believe eventually they will be replaced with appropriate and positive reactions.

    I can no longer modify my own behavior to appease the inflexible demands he holds from years of poor coping skills.  I can no longer make excuses for, or attempt to fight these behaviors either.  The only thing I can do to improve our communication (in regard to his ritualistic actions) is to calmly and directly tell him how I feel, what I want, and what the desired outcome can be if he considers a new way of handling an old routine.  Once I have afforded him the information (that neurotypicals are blessed with identifying easily from their youth), I need to step aside and let John choose how much he can comfortably begin changing.

    Aspies are not stupid.  Your Aspie husband is not an asshole, even if he appears to behave that way for no other reason you can comprehend.  My husband has a very challenging and uncomfortable road ahead of him.  He has to learn to undo things from his youth, things he is hardly aware exist in the first place.  My husband was not afforded the same opportunity to grow and adapt to the challenges in life that I was, and he was not afforded the ability to receive nonverbal information from those around him during his formative years… so that behaviors like today could have been avoided before they began.

    I cannot expect my husband to radically transform into a 36-year old man who responds maturely and appropriately to experiences that cause him sensory or emotional discomfort the same way a neurotypical man of the same age would.  I can be patient, I can be appreciative, and I can be supportive of the incredible challenges he faces and the exceptional effort he puts forth to overcome each and every one of them.

    It is my responsibility to love my husband with all of my being, the same way I desire his love for me.  It is my responsibility to stop being so aggressive in response to his instinctive defensive reactions, and it is my responsibility to ditch my use of nonverbal communication in favor of actual words… so he has a fighting chance at showing me how much he loves me.

    It is my responsibility to stop enabling his rigid routines that are preventing his own happiness and fulfillment in life (and for his family).  It is also my responsibility to be patient with him as he tries to change something that was once deemed impossible.

    Today I learned that I need to work harder on my own communication.  It became uncomfortably evident that knowledge alone, cannot alter subconscious and instinctive behaviors (for either of us).

    I know John cannot process cognitive empathy but yet… I still continue to use it in my attempts at communicating with him without even realizing I am doing it.  I learned that if my own effort and recognition of personal behaviors are so challenging to modify, then I should have more empathy for how overwhelmingly impossible altering instinctive behaviors must seem for my husband.

    Today, coffee grounds represented my husband’s willingness to deviate from an inflexible ritual that served to protect him in the past… all because he loves me.

    Who knows what tomorrow might bring?

    Update:  

    Tomorrow… and every day thereafter… John has thrown those stupid coffee grounds into the garbage can!

    Celebrate & appreciate every small success…

    THEY ADD UP


  • WHO ARE WE? part 2-2

    HOW WE CAME TO BE… A DISASTER

    WARNING! WARNING! WARNING!

    THIS IS LONG.  I don’t mean the sort of long that I have apologized for in the past either, this one is going to take a couple cups of coffee to get through!  Unless you are seriously intrigued by the post WHO ARE WE (Part 1) and want to know how we came to the place of an unhappily married Aspie/NT couple (inspiring the change that turned it around) you should avoid this post.  

    I think it is important to share this glimpse into our lives to be able to fill the gaps of how we first became infatuated and then fell in love with one another; only to find ourselves equally paralyzed in the middle of a shit-storm we could NOT find our way out of.  

    While this is about our personal journey, you may find yourself reflecting on your own relationship and identifying similar behaviors, thoughts, and actions from your own past.  You already know how the shit-storm ended for us (or if not, please keep reading my posts), so if you are not that into reading about another person’s story… you definitely want to click out of this immediately.  

    If you have found the end of the internet and got nothing left to read: give it a whirl.  

    You probably have to begin with part 1 to make sense of where I pick up in this story…  

    JUST LIKE MAGNETS

                    When John and I first came together we had a magnetic force that sucked us right into one another the moment we got close.  Within six months of him moving down to Florida, it felt like the magnetic force that once drew us together was propelling us further apart.  The harder I tried to close the gap, the stronger I felt resistance.  It became clear to me that one of those magnets would need to turn over if we were going to ever become close again. 

                    I assumed he was the one who needed to do the flipping.  At the time, I had every reason to believe this.

    SOMETHING IS VERY WRONG

                    I knew pretty early on that there was something inherently different about John, but I could never quite place it.  Honestly, I never wanted to in those early days.  John kept me sane and alleviated the grief I was going through (or helped me avoid it) and I did not want that to end.  I was too afraid to risk losing the man I needed that I knowingly refused to dig any deeper than the surface of why he appeared to be hiding a whole lot about himself. 

                    I knew that his explanations of his “work” in Michigan (prior to moving in with me in Florida) did not add up, I knew that his dismissive responses to questions about previous relationships were suspicious, and I also knew that a ton of other things he had given me short or contradicting responses to about his past did not make sense.   The problem was, I needed John so much (or I would surely be swallowed by suppressed grief) that I was too fearful I would uncover something that would make me want to leave him.  That fear caused me to never grill him when he gave me short answers or attempt to point out inconsistencies in things he said. 

    THE “HOLY SHIT” MOMENT

                    I still believe the moment I finally began to pull the wool back from my eyes came in the form of an acute bout of gastrointestinal distress.  John and I had only been living together for a few months when one morning, out of nowhere (while sitting in a class for nursing school), I began to feel queasy.  I excused myself to the bathroom and began to vomit like a scene from The Exorcist.  It felt like the plague had just hit me.  I sent John text messages telling him I was sick and wanted to come home.  He suggested I stick it out because I had an important test I needed to take notes for (I thought this was insensitive).  After telling him I thought I was dying, I reluctantly drove myself all the way across town (stopping to vomit on the side of the road) in a distressed scurry to my condo.  I recall wanting to ask John to come and get me, but never spoke those words aloud… despite not telling him what I wanted, I still found myself angry and hurt he did not respond, “You are in no condition to drive baby, I will come get you.”  When I finally made it home, John was lying in bed watching television.  I plopped down beside him (after vomiting again) and began to whine like a pathetically ill puppy. 

                    When it comes to being in pain, I am the toughest of the tough.  I even walked on an injured ankle for 10 months through my first nursing program to later discover over half of my talus bone (weight-bearing bone in your ankle) was literally rotten (necrotic) and the decaying tissue had to be surgically removed. When it comes to being nauseated however, I am the biggest baby who ever existed.  I want to be coddled and I want someone by my side to rub my head and tell me I am not going to die until I fall asleep.

                    When I fell into bed that afternoon, John immediately jumped up with his hands in the air as though he were telling someone to stop before they drove off a cliff… and said, “You’re sick, don’t touch me!”  I begged him to lay down beside me repeating, “I’m so sick, please stay with me, I need you or I am going to die.”  John replied, “You’re not gonna die” and then got dressed and walked directly out of the bedroom.  I heard the front door shut and after wondering where he had gone (maybe out to smoke?) I realized his cell phone was still on the nightstand.  I was too sick to chase after him and had no idea why he just abandoned me when I needed him so desperately.  I was feeling pretty unloved on top of the sickness, but eventually fell asleep.

                    About an hour after he left I was awakened by the front door.  John walked into the doorway of our bedroom, threw a few bottles of Gatorade at me, reached in the room (without moving his legs), turned the television on and said, “Drink that, you need to hydrate, watch some tv and you’ll feel better.”  With that, he closed the bedroom door and I did not see him again until the evening.  The minute he closed my bedroom door that afternoon, after begging him to stay by my side, I thought to myself, “Who does that?!?!?”

    My next thought was: “HOLY SHIT, I think I am living with a psychopath!”

                    It was in that moment that I first considered my boyfriend was a sociopath.  Every single action that seemed “off” to me in the months we had been living together began to replay in my mind.  All of the things that caused me to have an odd feeling that something was different about him began to set off alarm bells that I could no longer ignore.  This moment began a horrific downward spiral of fear and a constant questioning of his actions, words, motives, and intentions in every day that followed (for years).

                    Later that night when I finally stopped vomiting and was beginning to feel better, I asked John why he left me after I had pleaded with him to stay.  I was prepared to analyze his response and catch his sociopathic-self in action.  John responded, “You were sick.  Staying with you wouldn’t make you better, it would only get me sick.  There is no point in both of us being sick.  I got you stuff to get better.” 

                    I rolled over (angry) and went to sleep for the night. 

                    I never spoke of that again until right now.

                    As I write this, John’s response to me (now) makes perfect sense.  I did not describe to him why I wanted him to stay by my side that afternoon.  I didn’t tell him that when I was a little girl and got sick like that, I would lay on my father’s stomach and he would rub my head until I fell asleep.  I didn’t tell him that my father always made me feel safe when I was afraid and that when I get nauseous, I feel afraid.  I did not vocalize that even as an adult, I want the man in my life to respond the way my father did when I was little.  I didn’t tell him that if he had done that, I would have felt safe and loved or that I would have preferred that action to his chosen treatment option (which actually did make me better).  I didn’t give him the chance to tell me that when he is sick like I was, he doesn’t want anyone to touch him; that all he wants to do is drink fluids and distract himself with television.  I did not realize at the time that John responded to my illness the way he would have wanted to be treated

    TREAT PEOPLE THE WAY YOU WANT TO BE TREATED!

                    Isn’t that what we repeat over and over again to our children when we are trying to teach them to act compassionately?  I could not see back then that my boyfriend behaved in the most compassionate way he could for his sick girlfriend and he did exactly what he was told to do when you want to show someone you love them.  I had no clue what Asperger’s syndrome was and zero knowledge on how John’s perceptions altered from my own. 

    How could I have known that he would never pick up on my inner thoughts and feelings unless I explicitly stated them? 

                    Despite John treating me in the most compassionate way he knew how to during my acute illness, I perceived the polar opposite.  On my bed that evening, I did not have the wherewithal to realize my boyfriend was trying to treat me in a loving way and take care of me. I thought John’s response was cold, selfish, and completely indifferent to my feelings.  In my mind, his rationale for leaving my side when I needed him was the reply of a man who had no empathy.  The only humans I knew of that lacked empathy WERE PSYCHOPATHS.

    LET THE WALL CONSTRUCTION COMMENCE

                    Around the six-month mark of our life as a couple in Florida, the fun times that brought us together stopped being so fun.  I was beginning to think I made a terrible mistake with John and I was over-analyzing ALL of his behaviors as that of a potential sociopath (I had him under a very unfair microscope looking back).  I was going to nursing school full time and was inadvertently forced to take a part time nursing job (I was already a licensed nurse going to school for an advanced degree) because we had moved into a condo we could not afford (on his urging) on my pay alone and John did not appear motivated to look for work.  He always had an excuse for why he couldn’t get a job, like pointing out that we would never see one another if he worked full time during the day (I took evening classes) and I would make three times as much as him working part time than he could ever make (in Florida) working full time.  He also pointed out that my evening school hours would prevent him from transporting my daughter to/from school and her after-school martial arts program.  The condo we moved to was across town from the school she was zoned for previously, so he seemed to have a logical argument with that one… but I still resented him for not working every time I had to awaken for school, tired from working the previous night. 

                    My parents (and older sister) had been exceptionally amazing with my daughter “B” before John moved in. They went out of their way to work around my schedule and pick her up from school and after-school programs. They would keep her with them for long hours when I worked and were always graciously there to assist me in navigating the challenges of being a single parent.  Now that there was a perfectly functioning adult living with us who could share the adult responsibilities I had, they were not as inclined to offer their assistance.  This was predominantly because they resented the additional stress John seemed to place on my already-chaotic life.

                   My family had been incredibly apprehensive of John shortly after we deemed ourselves a couple. They were understandably concerned about our fast decision to live together as well.  In an attempt to not upset their already emotionally fragile daughter (in the wake of her grief for having the “love of her life” commit suicide), while also treading lightly to not compromise their ability to see their granddaughter/niece as often as they wanted… they tried their best to limit their full opinion about John and us (out loud anyway). With exceptionally keen cognitive empathy, I had little difficulty seeing through their hidden comments, questions, and nonverbal communication and I knew exactly how they felt about him.  With this air of displeasure in my choices lingering, I began to alienate myself from the family I had desperately clung to for support only months earlier. 

                   Soon, every aspect of my life began to feel like a heavy brick to carry.  Being financially maxed out and having to get a job: brick. Being a full time nursing student with weekly exams and taxing clinical rotations: brick.  Being far away from my daughter’s school and 30 minutes from everything that was once nearby: brick.  My boyfriend being emotionally cold and closed off: brick.  My boyfriend not working: brick.  My boyfriend not helping out around the house very often: brick.  My constant worry about my daughter’s emotional well-being: brick.  The unspoken tension with my family: brick. My unresolved guilt, anger, and paralyzing grief over Jeff’s death: abnormally heavy pile of bricks.    

                    Not wanting to carry the weight of all these bricks around daily, I began placing them at my feet.  I had begun building an imaginary wall around myself that would prove problematic in removing over the years that followed. 

    ISOLATION FROM FAMILY AND FRIENDS… CHECK

                    Everyone is quick to point out that their Asperger husband caused them to alienate themselves from the family and friends they had previously been close to.  They talk about this so often that it is one of the reasons neurotypical wives blame their Aspie spouse for destroying the life they used to have.  I resented John for the same thing within a year of living together and it has only become obvious (in the last nine months) that I needed to begin placing the blame where it rightfully belonged; on myself.

                    It was never John’s fault I withdrew from my previous life.

                    I knew I had ignored warning signs about John when our love was first developing, but I began to blame him for my choice to do so.  I knew I had consciously avoided learning who he “really was” before allowing him to move in with myself and child, but I began to identify this as John’s fault as well.  I felt guilty that I had not been more cautious before proceeding in our cohabitation (as a mother) and I did not want my family to know I felt this way or had my own concerns about the man living with me.  The last thing I wanted was to be told I was a bad mother or was not putting my daughter’s best interest above my own (but damn if I wasn’t starting to consider that myself).  In the early days of our courtship, I had rapidly admonished anyone who began to vocalize concerns about John to make them stop talking about something I did not want to acknowledge myself.  I shut them up so many times when I was in my state of ignorant bliss that my pride would not allow me to admit to my family that I was becoming equally nervous I may have made a huge mistake.

                    I did not realize it at the time, but I still had so much underlying bitterness tucked inside of me toward my family for the times I tried to scream out that my first husband (Jeff) wasn’t “well” but my fears fell on deaf ears.  I tried for so long to tell people (Jeff’s parents and my family) that I was afraid he would hurt himself, or that he needed help… but felt entirely ignored by everyone around me.  Jeff always appeared to be so happy (manic) and made everyone laugh; he was such a smiling goofball that the private life I experienced, whereby he was depressed and locking himself in the bedroom with a gun in his hand… no one else could believe.  No one else could see that this man was suicidal 3 months out of the year (or I suffered an incredible amount of anxiety and fear trying to keep him alive during those months) so they found it hard to believe the happy-clown they all knew could possibly fall into such periods of darkness.  Looking back, I can empathize with why they didn’t buy into my fears… all they saw was an anxious/panic-attack-stricken woman who was separating from her husband one day (for reasons they did not understand) and falling into his arms the next.  I never really shared the “details” about why I was so afraid because I didn’t want them to hate Jeff either.  All anyone could see in the two of us was a highly emotional and dramatically in-love couple that just needed to “grow up a little,” and everyone thought we would.

                      By the time John and I came together, I found myself frequently reflecting on all of the times I had vocalized a strong opinion about the man I loved back then, but was told there was nothing wrong with him and I was being “dramatic.”  My family (and Jeff’s mother) had also suggested on too many occasions that perhaps I was just imagining things out of paranoia.  I kept thinking about how I used to toil with the reality I had in my head about my husband versus the family’s perception of our reality; how that caused me to doubt (and ignore) my own gut feelings about the man I loved for many years. Ultimately, I had to submit that my gut instinct was always right about Jeff when he put a gun in his mouth and removed all doubt (for everyone).    

                   This reflection and subconscious animosity toward those who I felt “failed” me in the past with their incorrect opinions, enabled a breeding ground of stoic defiance when it came to my relationship with John. Every time my family hinted at anything negative or suspicious about John, I solidified my gut instinct that he was an incredible man that I was destined to be with.  I refused to consider anyone else’s thoughts about this man that I had fallen in love with, who I believed deep in my core was uniquely perfect for me.  The moment someone suggested otherwise, I came at them with some pretty unfair reminders about how they were “wrong once before” and maybe they should stop trying to manipulate me into believing their inaccurate judgements this time around.  

                    Ouch… that guilt-trip had to have hurt them a lot and cause them to not openly disclose how worried they were for my mental health.

                    I passionately and aggressively defended my relationship with John to everyone around me during the early stages of our union. By the time my own fears about John began to present themselves, I was not willing to concede to the fact that maybe it actually was ME who was wrong this time.  The more my family attempted to get their messages across to me, the more I purposely fought to prove John was far more amazing than the man they were seeing on the surface. I became so preemptively defensive about John that my family became even more concerned about my emotional stability and who John actually was.  

    None of us openly discussed this though… it just lingered in uncomfortable nonverbal messages as each day passed.

                    All of these unspoken things between my family and I (that we all could see in one another) became this gigantic elephant in the living room each time John and I were with them.  Mind you, John had absolutely NO IDEA any of this was going on beneath the surface.  The moment we were in one another’s vicinity, I would feel uneasy and anxious.  I would be on guard at all times that John might say something inappropriate (as he sometimes did) or something that sounded rude (as he often did).  I would panic when he would bury his face in his cell phone through an entire family dinner; looking into his lap in lieu of joining our “playful” dinner conversations.  My family (particularly my father) thought this was highly disrespectful and he was not interested in any excuse I made for why John did this (I wasn’t even sure at the time why he did this, or why he continued to do it despite asking him to stop multiple times). 

    NOW I “GET IT”

                    My family speaks in tongue.  We are the most animated and loud group you could put in a room together.  We have our own twisted means of amusing one another that often includes pointing out other people’s flaws to make light of our own (which we are fully aware of).  We say mean things to one another in jest, and while we perceive our social gatherings as a time for lighthearted banter, I imagine we create a pretty intimidating environment for outsiders who are unfamiliar with our sarcastic and peculiar humor.  My first husband used to say that my father made him feel like he was Ben Stiller in the movie Meet the Fockers (if that gives you an idea of how a neurotypical man perceived his place in my family).  Looking back on it now, I can’t believe John ever agreed to return to my family’s home after his first few encounters there.  It is astounding he agreed to go back for more even after I told him all of the unspoken things my family were really thinking about him and us.  Add to it my constant nagging for him to stop acting “so rude” when he was there and I imagine I must have compounded his social anxieties with my family in a debilitating way. 

                    John must have truly loved me to continue accompanying me to my family’s home back then.  Unfortunately… it would take a long time for me to comprehend the strength of character and commitment toward the woman he loved in all of the encounters I found so damning at the time.      

                    NOW, I know that I unintentionally took John into the lion’s den repeatedly and instead of being there to protect him, I made it even more frightening.  I kept bringing him into the “Ultimate Aspie Nightmare” each time I took him to one of my family gatherings when we lived in Florida.  I forced him into an unfamiliar environment where the social communication was beyond confusing; we spoke loud, rapid, and with hidden meaning in our words.  We jumped from subject to subject, appearing angry one moment and laughing the next.  We made mean comments about people that only our group could understand (via our nonverbal language with one another) were not mean at all.  John could not have known we were being sarcastic or self-deprecating and often meant the opposite of what we were verbally articulating.

                    For instance, I might say, “Did you see Amanda and her how fat and ugly she got?” My sister might respond, “Oh yeah, what a hideous heifer, she should try to eat healthy like I do!”  Only, my sister may have been smiling as she stuffed a piece of cake in her face and the whole family might have known that Amanda just lost fifty pounds and looked amazing. Since John could not neurologically make sense of the nonverbal language we were using and didn’t know my family well, he could not realize we were being ironic in our speech.  In a situation similar to that, John might later comment to me that we were really cruel and abnormally judgemental about other people when we got together.  I would not be able to make sense of why he did not realize we were actually joking.  I never considered that he didn’t understand we were laughing about how our own diet and absent self-control was preventing us from emulating the incredible willpower and dedication to change that Amanda displayed.  It never occurred to me that John didn’t realize we weren’t insulting her, we were highlighting how impressed we were with her self-determination.  So when John randomly commented that my family was mean, judgemental, or gossipy; I would find myself angry at him for insulting my family.  I might even accuse him of being a hypocrite and try to point out what an asshole he could be toward other people.  (FYI: Amanda is a made-up person)  

                    Every question John was asked by my family in those early days came at him in an obscure way and he could not keep up with what anyone was saying because he had not learned the underlying way we were using our words. John was able to often identify when his own family said something that sounded judgmental, but knew they were good people and was able to look beyond the choice of words they used in conversation (even if they still baffled him). This bizarre way neurotypicals use sarcasm often causes an Aspie to think that saying “mean” things about people is a way to get others to laugh.  Since John never learned the context of “how” we poked fun at others (and that we did not do it in a hateful way), he often tried to do this himself… he just came across like a jerk when he tried it though.

                   John could not decipher that type of humor, and he certainly could not do it with my family.  He did not know who my family members were in the past, so he did not know if they were good people, or kind people, or people he could trust.  When my family asked John a question, he answered their question directly.  Not knowing they were often asking something different with the words they chose, he would frequently come across as being sarcastic or rude himself (that’s irony right there).  Looking back, I cannot imagine how torturous it must have felt to remain in a social gathering with my family.  It is no wonder he buried his face in his phone each and every time he sat down for a meal with us. 

                    Oh, how that man must have adored me to continue subjecting himself to that misery over, and over, and over again!

    WE WERE SO IGNORANT

                    During those early days (of course) none of us knew a damn thing about John having Asperger’s syndrome.  My oldest sister was the most challenging for John to be around (and vice versa).  She was still in a lot of pain over the loss of Jeff (her “brother”) and she did not care for the insertion of John in our lives… at all.  My older sister and I had a rocky relationship with one another in the previous two years that was absolved when Jeff died and became strained again when John moved in.  She seemed to feel like everyone was betraying Jeff by allowing John to “fill his void” so rapidly, so she egged on a lot of the family’s concerns about John in those early days (even if unintentional and I do not fault her for this).

                    Around this same time frame my younger sister was dating an incredible man named Michael (now my brother in law) that she had been friends with since they were teenagers.  Everyone always loved Michael (who adored my little sister) and we would try to force her to risk their friendship to try dating him.  My father was ecstatic when they finally began a relationship, and since it was around the time John and I also got together, there became an unfair comparison of the two men when we were all in a group together (with me doing it the worst).  Michael was sweet and gentle; he treated my sister like a queen and went out of his way to earn my parents respect and faith in him.  John rarely spoke and never showed those nonverbal acts of regard toward me that suggested he loved or respected me when he was with all of us. 

                    John and Michael got along wonderfully from day #1 and while John felt at ease when Michael was present, I rapidly began to feel the opposite.  Michael was someone John could talk to that seemed to like him in the group.  He was another outsider to John, who did not realize Michael had been coming around for years before he and my sister became an item.  John indicated to me several times that he didn’t feel like such an alien when Michael was there and would often point out that Michael was the only other “normal” one in my family. 

                    I felt exceedingly uncomfortable whenever Michael and John were both around with the rest of the family because I became hypersensitive to everything Michael did to display affection for my sister that John was not doing.  I began to develop my own unintentional comparison of the two since my sister and Michael were also two of the only people John and I ever went out with socially.  The more Michael treated my sister like the most beautiful gift he had ever been given, the more I became acutely aware and resentful that John did not treat me the same. 

                    As time progressed, I continued to drive a wedge between myself and my family because I didn’t like the way I felt when John and I were with them.  I blamed my own choice to alienate myself from them directly on John, who was actually putting himself through hell to be supportive of the relationship we had. The more I pulled away, the more I began to perceive John in an unfairly negative light.  It did not take long for me to begin placing expectations on how John should be behaving as my boyfriend and then resenting him when he could not meet them.  

                   John never knew all of these things were going on inside my mind, and while I thought he picked up on my hints, suggestions, and comments about those around us or things I wanted… he missed everything I was trying to tell him.  Sometimes I would snap at him and say something mean about how he was a dick and I wish I had someone like my sister did.  Since he had no idea what I was emotionally toiling with, or what he was doing “wrong,” a comment like that was unnecessarily cruel and hurtful.  Despite my only communication with John about how increasingly resentful I was becoming being expressed by every nonverbal method possible… he never heard a word of it (because I never actually said a word about it!).

                 As this resentment grew, so too did this nagging thought that he had “tricked” me into this unequal relationship devoid of emotional reciprocity.  Despite my brewing anger, I dug my heels in.  I was determined to hide the fact that I was a fool who had been duped by this man I thought I loved; I would not allow myself to admit defeat to my family or self.  

                    Deep inside I knew that my ego was causing me to remain in an unhappy relationship that I did not understand, but I had too much stress in my daily life to dive into my own faults and risk a personal collapse. I chose to focus on the tangible flaws John had and things I felt he was doing “wrong” instead.  I managed to convince myself that if I could just get him to do A or B, then things would get better.  I became preoccupied with the alphabet of failures on John’s behalf that were “fixable” and put forth great effort in making him see them. 

    THIS DOESN’T FEEL LIKE A PARTNERSHIP!

                    I had always been a very clean person and kept an impressible tidy home (military habits) so I was put off by how dirty John could be.  He was strange in his idea of clean, as our floors (all tile) were always meticulously kept up by him, but our bedroom looked like a bomb exploded day after day.  To me, John was sitting at home all day living the good life, not lifting a finger, while I was at work or school.  For those of you who do not know, nursing school is work because these students are literally going to hospitals working as a nurse for their clinical rotations while also trying to absorb mass-amounts of information enough to pass weekly exams.  I would fight with John over the housework day after day from getting him to fix things, do laundry, or just cleaning up after himself. 

                    What I did not realize at the time, was that I never discussed with John why I wanted things clean and organized (how they reduced my feelings of stress) and I never actually told John directly what I expected him to be doing when I was at work or school.  I would just come home and make sarcastic comments like, “I see you were working hard today” while looking directly at a pile of clothes on the floor with a facial expression that indicated I was angry and wanted him to get off his butt and clean immediately.  

                    John did not see my facial expression (he couldn’t) and he did not pick up in the sarcasm of my comment or the tone and pitch by which I said it.  A comment like that would just seem like a weird statement that made little sense to him, so instead of bringing up the fact that he did not have a job, he would not investigate what the hell I meant any further.  I would assume John knew exactly what I meant by my comment and perceive his lack of action as a purposefully defiant behavior to let me know he was absolutely indifferent to how I felt.  

                   The longer these “missed” messages went on (but I thought that John was getting them) the more hostile I would become until I eventually snapped at him with something nasty.  I might tell him he was a selfish, lazy asshole, or suggest that he was using me and obviously didn’t care how I felt about anything.  Uncertain where my comments were even originating from, John would respond with such defensiveness and hostility that we could not even discuss a minor issue without a major argument ensuing.  No mutual agreements were ever reached between the two of us so they compounded onto one another day after day, month after month.  

                    Sometimes, after a particularly hostile argument, I would come home to one part of the housework I complained about being done while the rest had gone untouched.  I could not grasp why he would only do one of the five things that I had been bitching about, so I felt irritated even when he did show some initiative. 

    John received zero positive reinforcement from me for anything he tried to do to make me happy and therefore… stopped doing anything positive.  

                      Of course, NOW, I realize that whenever John attempted to do something nice for me or our home, I still found a reason to fight with him and tell him he did something else wrong, or it wasn’t “good enough.” Rather than invite another unpredictable fight for unintentionally screwing something else up, John chose to take his chances that I would come home and not be unusually angry with the messy house I walked into. Since the house was dirty when I left (and I didn’t seem mad when I left), it made sense in his mind to not risk a fight by doing “the wrong thing” while I was gone. His bizarre behavior makes sense if one considers that he had no flipping clue what was going to trigger my next breakdown.  

                     Do you think I was able to comprehend this rationalization for his actions back then when I had zero knowledge of Aspergers or cognitive empathy?  Not a chance in hell. Even when I did learn about Asperger’s syndrome, it would take many years before the cognitive empathy deficit John had made those actions seem appropriate at the time.

    BUT, JOHN WASN’T ALWAYS LAZY… RIGHT? 

                    John drove B to school and picked her up as much as I did, but outside of that, he had no responsibilities at all in his new life.  From what I understood about his life before moving to Florida, John had worked in heating and cooling as a day job and had a ton of side jobs he did through word of mouth (refinishing basements, building decks, etc.) whereby he was always busy, and always working hard each day.  John was (is) an incredibly talented man and I had seen the things he had built and entire houses he had gutted and transformed into meticulous beauties… yet I could not get him to even hang a curtain in our new home (despite asking repeatedly).  I knew he had not lied about his skills and previous accomplishments since his parents and family were quick to point out many things John designed and built independently when we were visiting Michigan with him.  I believed he had to have had a job when my first husband lived with him the years prior to our relationship because Jeff used to tell me all about how he wanted to do what John did for work or how he had spent the day at John’s job-site helping him.  Jeff used to go on and on about the money John made and even credited John with sending money to me when he couldn’t afford to (to help pay for B’s activities or buy us groceries).  Jeff was exceptionally fond of John and envious of his talents and “career” and made no bones about how much he wanted to emulate his best friend.

                    I could not make sense of how John was this hardworking and talented man before he met me, yet ceased all of these efforts after moving to Florida to be with me. None of his behaviors were adding up; how could this man willingly opt to appear lazy and unmotivated when we had only been together for a little over a year and he had only lived with me for six months?  

                    My common sense told me that any narcissistic or sociopathic man that was trying to manipulate and use a woman, would start out trying to impress her and utilize slow tactics to take advantage of her over time.  John appeared to feel no obligation to impress me and even less obligation to address the fact that he wasn’t putting in any effort to do so.  His behavior did not fit the characteristics of a manipulative person, nor did it fit into the knowledge I had about his work-history before he moved down.  The harder I tried to explain his actions, the more confused I became.  I knew something was missing from the real reason he wasn’t working and trying to “man up” the way I had always seen from men in the past and had come to expect in our gender-stereotyped society.  

                    It did not help that my family was constantly picking at me with questions about John’s employment, asking when he was going to get a job, whether or not he was contributing to our life, why he was being lazy, etc. Between my own bewilderment about John’s absent motivation to step up and begin contributing to our life and future financially (and in the home) and my embarrassment every time my family questioned me on this… I found myself angry and frustrated on most days.  Since I had no reasonable explanation for how John was behaving, I felt I had no choice but to believe he was purposely trying to take advantage of me, and therefore, must not respect or appreciate me at all. 

    This ignited a hostile and bitter anger inside of me. 

                     Sadly, I can go back to those days now and feel regretfully sympathetic to what John must have toiled with at the time.  He was paralyzed in the ability to initiate the employment process and despite feeling pretty shitty about himself and the role he knew he was supposed to fill… he was far too anxious and insecure to take action and initiate change or progress in his professional life.  John had to sit there day after day and pray I would not discover his truths; that I would not realize he was incapable of navigating the social skills required to interview for a job, or establish a working relationship with people he did not know. He had to sit there and pray he would make it through another day without me bashing him for being a “lazy mooch” when he knew that was not what he wanted to be. Unfortunately, he rather I think that about him then tell me the truth about his limitations or discover he wasn’t “normal” and leave him.  It is not lost on me (now) that John didn’t know “what was wrong with him” at the time either; he had failed to find an explanation for the social difficulties he had throughout his entire life… so how could he begin to explain them to me in a way that would not make me want to haul ass?

                    John wasn’t lazy or incompetent, he was afraid.  John must have lived with so much fear back then because he didn’t want to lose me, but he was caught between a rock and a hard place.  If he told me he had never had a real job in the traditional sense (despite working hard any chance he got) I might think he was a loser and leave.  If he kept sitting around doing nothing every day, I might also think he was a loser and leave him.  John was desperate to not lose me, but he had no clue how to get around the position he found himself in.  He tried his best to make excuses I would buy into, or deflect the topic of him working in the hopes it might buy him another day or week to “pull himself together” and overcome a social anxiety and self-critical paralysis that had existed since he was a child. He opted to just take it day by day, hoping another option would magically present itself and he would be able to show me he wanted desperately to work hard for our family and how much he valued us.  He sat back and prayed something would just fall into his lap that would serve to mask the truth about himself and not jeopardize my love for him.

                   Unfortunately, those he knew and trusted that had historically helped him overcome the social deficits he had, those who helped coordinate work for him over the years so he could utilize his talents and earn good money… now resided across the country in another state.  He existed with the debilitating stress every day of knowing he may have no choice but to go out into the socially cruel and unforgiving world that made him feel like a failure all his life. The last thing he wanted was for me to see what a “failure” he was, so he just waited.  He waited and prayed something would come along to mitigate the two shitty options that stood before him.  

                    I didn’t know any of this though.  I didn’t know how frightened he was of losing me.  I didn’t know how humiliated he was at the thought of failing.  I didn’t know how exhausted he felt every single day as he mentally tried to work out a way around it all.  

    I just felt used, resentful, and stupid.

    BUT I SET THE STAGE FOR STAGNATION & RESENTMENT 

                   When John and I originally talked about him moving to Florida, I was the one who told him, “I am going to be getting paid my full salary while I only have to go to school full time and finish my nursing degree. If you moved down, you wouldn’t have to work for a while, you could help me with school and we could spend a lot of time together.  It’s the perfect opportunity for us both to enjoy our life and I want you to know I don’t expect you to jump into working right away.  I know you would need time to settle into this huge change you are making to leave everything you know behind.”  

                  I realize now it was my explanation of what I would expect of John when he first moved down that eased his anxiety enough to choose to forgo his previous life of predictable routines and security for the life he wanted with the woman he loved.  John was presented with a perfect opportunity whereby, he would have a significant period of time to secure my love… without any pressure being placed on him to figure out how to “be independent and take care of a family” the way he wanted to.  Whether or not John truly believed he would magically conquer his social anxieties and begin progressing as an adult with regard to financial stability and a career… or whether he thought I would just be happy he was there and never push him toward such a thing… he was given the promise of time before he had to worry about any of that.  He knew he didn’t want to lose me and ultimately, I do not think he looked beyond the initial time I was promising him because he really hoped it would just work itself out.  The response I received from John when I presented him with my initial plan and expectations if he moved down was: “Come on Kara, do you really think I am going to be a bum and not work when I move down and just let you pay for everything? Of course I will get a job, it just might take a while for me to find one in a new state.”  

                 I would maliciously use his words against him more times than I care to admit in the years to come as I reminded him that he “promised he would be my partner and wasn’t contributing to any of the adult responsibilities we had” and that he “lied to me!”

                 In the beginning, I was perfectly content with the plan we agreed upon and expectations I had laid out before him.  When we moved into the old condo in a wealthy neighborhood so we could come home to a “vacation-feel” every day, and I could lay in his lap on the docks listening to the water (like we imagined that night in the hotel where we had our first kiss)… I was happy with our choice to move into a new home we could share in our new life together. Everything seemed like a mature decision at the time because I believed that Johnwould be getting a job soon to offset the cost of living in a location that exceeded my sole financial means. When that prospect appeared to be slipping further and further away, and I was the one picking up the slack for his failure to live up to his promises, I felt incredibly betrayed.  

                 I truly believe in my heart that John began our life together with the most optimistic and pure intentions.  I believe he honestly thought he would be able to live up to his words at the time he said them because he was high on life and finally making adult decisions that he never imagined he would before meeting me, like committing to a long-term relationship, moving across the country, and taking on the role of a stepparent to my (then) 11-year old daughter.  I do not doubt that he imagined he would also be able to brave the task of finally tackling the career-aspect of his adult life as well.  He assumed he would be able to accomplish this with the same passion he had to make all of those other difficult choices, and it is perfectly understandable why he would have believed this.  

    Unfortunately, when John finally realized he was not ready to step into the social world that he was certain he would fail at; he froze.  

     

    BUT, I DON’T CARE ABOUT MONEY….             

                    It was never the fact that John was not working outside the home to make money that bothered me most, it was the fact that he did not appear to offset his unemployment by picking up the slack in our home so I did not have to.  It was also the fact that he never verbalized any intention or appeared to be working toward changing any of it and I did not understand why.  If I asked him about work or his future plans, he would answer simply and then avoid me if I tried to probe further; “I’ll go look tomorrow” or “I’ve got some jobs lined up in Michigan next month so I can’t look for a job here and then leave it, I will get a job when I come back.”  These were some of the more common responses I would get from him to avoid stepping out into the unknown.  If I questioned his previous working experience (which I had begun to by that point), John would find a way to pick a fight with me so the subject got buried beneath another topic entirely. 

                    After every stupid fight, there was no resolution.  John did not return later to calmly sit down and talk like adults, which he would promise to do if I would agree to sideline a discussion at that moment. John’s behaviors left me dumbfounded and frustrated.  

    As time wore on, I became worn down. 

    SO, WHY DIDN’T I JUST END IT?

                    What really stopped me from kicking John out that first year after he moved in with me was that we would still have those Wednesday nights where my parents took B for the night and John and I would go out on “dates” together.  On those nights, John and I would drink alcohol and act silly like we had the first year we began our long distance romance, and I would feel happy again.  We would laugh so hard our stomachs hurt and we would smile from the start of the night until we fell asleep.  Sometimes we would go out to a bar down the street (we lived next to the tourist area of Clearwater Beach) or we would go fishing until the early morning hours.  John would tell me he loved me and he would say things that I had been wanting to hear the entire week leading up to that night.  Things like, “I was never happy until I met you” or “I’m sorry I don’t have a job, I will do XYZ because I really want to take care of you.”  He would tell me I was beautiful, he would seem jealous if another man tried to talk to me, he would hold my hand and hug me without being asked, and he never took his eyes off of me… even if a gorgeous woman walked by or tried to talk to him. When we went out together on our date nights, John always had 100% of his focus on me and made me feel beautiful and cherished in a sea of strangers our age. 

                    John would get hit on by women all the time; I mean… ALL THE TIME. When we went out to a bar, John caught the eye of a dozen women each time and my cognitive empathy skills had zero difficulty deciphering exactly what those women were thinking!  I began to relish in the times I could just stand back (having left his side to get a drink or use the bathroom) and watch as he (sometimes rudely) blew these women off (some of them abnormally gorgeous) or announced he had a girlfriend with a look of pride.  In feeding my insecure ego, particular the severity of insecurity I felt in the week leading up to our nights out whereby he showed little regard for me; those actions always made me feel desired and loved on a grand scale.  Every once in awhile on our Wednesday nights out, he would even answer questions about his childhood or a past girlfriend, or even talk to me about the emotions surrounding Jeff’s death, something we had curiously stopped talking about altogether (which likely complicated my grief process and underlying emotional liability).

                    I did not know at the time that when John was not put at ease with alcohol, he was in a constant state of hyper-aroused fear.  John was devastatingly paralyzed by his social fear almost every day that we spent together.  He was always afraid of disclosing too much about himself that could cause me to run from him and he was continually scared he would do or say the wrong thing and push me away.  This fear made him choose silence when he did not understand my words, thoughts, emotions, questions, reactions, expressions, or behaviors. He opted to say nothing in lieu of saying something that might make me stop loving him.  All week long John’s behavior, from appearing lazy with housework (afraid to set me off and do something wrong, or having no idea I even wanted him to do something), to not looking for work (social phobia and lack of self confidence), and minimal communication (difficulty navigating my thoughts and intentions and the fear he might say the wrong thing) ALL made him seem like a bizarre and unflattering character throughout the week.  

                   On Wednesday night though… John had alcohol in his system.  Sometimes we had only a few drinks and other times we behaved like youngsters on our 21st birthday, staying awake all night drinking and being silly. He never acted drunk or got belligerent or mean; he never started telling wild stories and lies like a lot of the drunken fools I’ve shared drinks with over the years did.  John acted like John, but he had this quality that I never got to see during the week.  

    I could not connect the dots back then as to why alcohol seemed to make John act more… human… I just knew it did.

                    John had empathy when he was drinking, and it was real.  This caused a lot of confusion for me during the times I tried to convince myself that he had ZERO empathy and was near-robotic in his emotions. Over the years I would feel so angry at him and his apparent indifference to my tears that I honestly thought he was incapable of processing empathy at all.  When I would settle into this belief for long enough to begin prepping myself to leave our relationship, I would always go back to those Wednesday nights in my mind.  I would try to figure out how he could lack empathy altogether, but suddenly acquire it once he had a few drinks.  It did not make any sense to me because if someone does not have the capacity to process empathy or behave in an empathetic way, no amount of alcohol is going to magically create that, and I knew this.  

                    It was because of those Wednesday nights and the times I was able to see John for who he really was inside, that I inevitably came to the place I am today and decision to keep trying.  I could never bring myself to give up on a man that I knew in my core, had emotional empathy. This deep-rooted knowledge did not bring me closer to understanding what was happening back then, but it did motivate me to keep my heels dug in while I continued to search for answers.  

    Those Wednesday nights kept me believing that someday, he and I would have so much more.  

    BUT, HOW COULD ALCOHOL CREATE EMPATHY?

                            With alcohol comes a loss of inhibition and fear.  Giving John beer made him feel relaxed enough to let go of his constant fear of losing me. Giving John alcohol made him feel safe enough to speak. Knowing that I was also drinking (and had a terrible memory the next day to specifics even if I only had two glasses of wine), John felt comfortable that even if he screwed up his words or said something stupid or too honest; there was a good chance I would not readily recall it the next day.  He also knew he could deny it and say I was too drunk to accurately remember what he said, or that he was so drunk he was talking nonsense. Either way, John’s guard was dropped low enough to chance honest communication when he drank and he had a default to excuse himself if that honesty ever made me think less of him.  

                    Every Wednesday night I would become acutely aware that I was missing only a few pieces to solve the puzzle that was my peculiar boyfriend. Every Wednesday night reignited my desperation to locate those pieces and uncover the complete puzzle image. Once a week, John and I had an entire evening of being in love.  Once a week, I saw the side of him that had me smitten from the first day I met him.  Once a week, John would behave compassionately toward me; he would talk to me, and he would remind me that he was not a robot incapable of empathy.  Once a week, I would choose to forgive and forget all of the crushing missteps we took in the six days that came before.  Once a week, I would fall in love with John all over again and pray that when I awakened the following day, that man would still be lying beside me. Once a week, the voice inside my head became demonstratively loud as it screamed out, “Do not give up on him, he is amazing and exactly what you need in your future, listen to your gut Kara!”  Once a week, I believed we were fated to one another and our lives were meant to be happy.  

                    Of course… everything would just go right back to the same old thing the next day and I would hop right back on the roller-coaster ride of insanity.

    BUT, THEN IT CLICKED…

                    One night while at work, a coworker and I went outside to get some fresh air and take a break from the patients we had been caring for all evening. This coworker was having a particularly rough week related to her 9-year old son and his behavior problems at home and in school.  While I welcomed her to vent (and intended to return the favor by venting about John), she began to describe her specific hardships. She spoke in great length for some time about her efforts to get her son’s school to understand his “disability” and of the emotionally exhausted mental state she found herself in trying to help him without any support or beneficial tools to make sense of his bizarre behaviors. I listened to her for a while without much empathetic connection, as my daughter never presented a parenting challenge for me and was actually (I felt) an abnormally gentle, helpful, compassionate, and intelligent child (she was only a few years older than my coworkers son).  

                   With my best effort to be attentive to her words, I found my mind wandering while she spoke.  I thought about John at home watching movies without me, playing video games, or making the house I worked hard to clean that afternoon a disaster and wondered what I was going to walk into when I got home in the morning.  I was thoroughly engrossed in my own emotional exhaustion the whole time my coworker was spilling her guts to me.  Just like in a movie where a person gets tunnel vision and is able to hone in on a conversation in the distance and hear words being spoken aloud like they were slowed down and abnormally clear… my focus began to suddenly close in on what my coworker was saying.  I instantly found myself fully engaged in everything coming out of her mouth as she spoke of her son’s rigid morning routine with breakfast, his avoidance of emotionally-charged communication, his disregard for her requests to clean up his toys only to turn around and vacuum the house without being asked once she had yelled at him and cried that he was stressing her out.  I heard every word she said about her son and found myself near tears when she said she questioned whether or not he had the capacity to love her. She talked about how he thwarted any physical contact like hugging and did not seem to care when other children and adults were hurting… that he just walked off and played with his cars in the corner, seemingly oblivious to the suffering of his own siblings or family.  The moment she told me he seemed “indifferent” to human emotion in general and she was worried he was going to grow up to be a sociopath, I found myself blurting out:  

    “Wait, what did you say he was diagnosed with again?”

    “ASPERGER’S SYNDROME”

                    All of the behaviors she was describing sounded unnervingly similar to my adult boyfriend.  In that moment, John’s behavior seemed to finally have a name!  That was the longest night shift I ever worked as the clock slowly moved forward enough for me to run home to Google-search the words: Asperger’s syndrome. 

     

    THE OBSESSION BEGINS (For me and me alone)

                    I left work that morning and began researching everything I could find on the topic of Asperger’s syndrome.  I purchased every recommended book with the “bible” of them being, The Complete Guide to Asperger’s Syndrome. I spent the next few weeks researching, reading, and highlighting every single similarity to John that I could identify with. Within the first hour of reading about AS, I was convinced beyond any doubt that John had this Asperger-thing. Within a few weeks, I thought I was a subject-matter expert about how Aspergers must have presented itself in his childhood.  I began to write down one “characteristic” after another and then follow them up with pages upon pages of how John had displayed similarities.  

                    The only glitch in my new discovery (which felt like vindication and relief all at once) was that I could only find vague information to explain how these characteristics and behaviors develop in the first place for Aspie children. I found tons of examples of how they presented themselves, yet very little information on why. Although this was before AS was lumped into Autism Spectrum Disorder, it was still discouraging that while I thought I had initially stumbled upon the Holy Grail; the search of adults with Asperger’s syndrome came up with even more confusing or vague information, none of which seemed to present an immediate fix to my relationship struggles. By the time I got around to searching about Aspies and their “Neurotypical” spouses (which I realized I now had a label myself), I was left with a rather grim outlook on what this diagnosis would mean for John and my future.  

    Overall, my search of adult men with Asperger’s syndrome only managed to produce a flurry of some seriously jaded and pissed of spouses married to one of them.     

                    But still… I had finally found a name for what was “wrong” with my boyfriend.  I was convinced if I could get John on board with reading about it, he would (somehow) magically undo all of the negative behaviors he developed because of it.  That was my identified solution to saving our relationship and for a hell of a long time, that became my sole mission in life.

    OK, TIME TO GET JOHN ON BOARD…

                   One night I asked John if he would be willing to listen to me for a moment.  He reluctantly agreed and I read to him a little about Asperger’s syndrome and then waited for his response.  I had been information-gathering for over a month, prepared to engage in mind-blowing discussions with him when I finally found the right moment to bring it up.  I honestly thought I had just given my boyfriend a radical epiphany-worthy piece of information and I was as excited as a child on Christmas morning to receive the gift of his response. John replied, “Yeah, I guess that sounds a lot like me.” He showed absolutely no interest beyond that half-assed confirmation in my diligent research.

                    Never had I felt so deflated in a response from someone as I did that night. I comforted myself with the thought: “At least he did not argue my discovery, that’s a start.”

                    I really assumed that John just wasn’t ready to “take it all in” at the time.  I sat back with as much patience as I could muster and anxiously waited for him to seek me out to have a heartfelt discussion about Aspergers.  I waited for the day he would thank me for uncovering something no one else could tell him all of his life.  As narcissistic as that may sound, I was really proud of myself for connecting the dots when my coworker spoke of her child.  My reading indicated that the majority of women did not realize their husband’s diagnosis until their adolescent child received one; at which time they subsequently became aware their husband was the same way. 

                    I patiently waited for John to come to me and talk about what I uncovered.  I waited… and I waited some more.  After about a month, nothing ever came of it.  During the month of waiting, I found myself more understanding and less argumentative with John.  I tried to become the girlfriend he needed (who understood him) and hoped he would become motivated to do the same.  We got along wonderfully and John seemed happier than he had been in a long time.  It did not occur to me at the time that John was far happier in our daily existence because I finally appeared to be happier.  It was my cessation of complaining about him, pointing out his wrong-doings, and positive attitude in general (indicating I enjoyed his company again) that made him feel less anxious around me and more communicative.  I (on the other hand), thought that John was spending his days researching Asperger’s syndrome and that he appeared happier because he was beginning to uncover why his life had been so difficult and was working harder to communicate effectively with me.  

                What an idiot I was to assume he was interested at all in this diagnosis I wanted to affix to him.  How terribly I set myself up for disappointment when I eventually realized he had not cared one bit about Aspergers, he was behaving different only because I WAS BEHAVING DIFFERENT!  Of course, I didn’t know this and kept imagining some fantasy world where my boyfriend was using his spare time to investigate AS and I eagerly waited (with a daily smile to indicate I was on the ready) for him to approach me with everything he had learned.

                Eventually, I accepted that John was not going to do this independently.  I thought his reluctance was directly related to his Asperger’s syndrome and difficulty initiating a conversation… so I decided I would have to go to him. 

    BUT, WHAT APPROACH WILL WORK BEST?

                    I became obsessive over the Asperger diagnosis.  Like so many other people, I felt like I finally had answers that made sense.  I was relieved to know my boyfriend wasn’t an asshole; he just did not realize he was being mean or insensitive towards me.  I was so excited to remove the notion that John might be a sociopath from my mind.  I also truly believed this discovery would result directly in John’s motivation to enact change in our relationship.  I had so much relief and empathy for John the more I read and I began to transform all of the anger and resentment I had into sympathy, guilt, and sadness for the life John had lived before me.  I wanted to ask his family if they had ever heard of Asperger’s syndrome so they could confirm what I already knew to be true in my heart (but we were not close like that, so I did not reach out to them).

                    I spent weeks attempting to directly engage John on the (not yet official) diagnosis, but he had no interest in these attempts and dismissed them as quickly as I brought them up.  The more he dismissed me, and the only thing I was interested in talking about, the more we began to argue again.  We continued to fight, but it was a little less painful and personal to me since I now had more patience and tried to look for hidden reasons behind his words and actions that I could attribute to his AS in lieu of him purposely being a jerk. 

    John became increasingly irritated with my obsession to talk about Asperger’s syndrome and before I knew it, our once-happy Wednesday nights together turned to the day of the week John dreaded most.

    WITHOUT WEDNESDAY NIGHT… WE WERE IN BIG TROUBLE

                    Our Wednesday nights were our time to reconnect (via alcohol making John more verbal).  Once I became focused on Asperger’s syndrome and convinced myself that his acceptance of it yielded the answers to our disconnect, as well as the only possible solution to remedy it; I tried to initiate clever ways to get John on board with my obsession.  I would start off our Wednesday date nights as we always had; laughing over light topics and sharing a few drinks. Once I thought John had enough alcohol in his system to let his guard down, I would nose dive right into the topic of Aspergers.  The more he tried to evade the topic, the more I began to press him to discuss it. 

                   Since John had historically been more responsive to me when he drank alcohol, I saw Wednesday night as my only chance to get him to communicate about this life-changing information that could save our relationship. John did not appreciate my unwavering efforts in this.  The more he declined discussing it, the more anger I began to feel toward him. 

                    How could we get better if John was not going to acknowledge what was wrong? 

                    To me, John being on the same page as me was the only way we were going to begin to move forward.  I believed he had to read at the same pace I was if he was going to start changing his ways (what a silly fool I was).  I became so dedicated in convincing John to educate himself about AS that I pushed him further and further away from engaging in any conversations with me.  The moment any hint of a topic about emotions or human behavior came up, I would use it as a means to inject how having Asperger’s syndrome might cause misunderstandings and then associate it directly with his previously negative behavior. 

                   Before I knew it, I was attributing every single step John took and every single word he uttered to his Aspergers.  Before John knew it, he had begun to associate my ingestion of alcohol with me trying to force this Aspie-thing on him and our subsequent fighting.  When we drank, I incorrectly assumed I would find a way to get through to him while his guard was down.  When he held strong in refusing to engage in this topic regardless of how much alcohol he swallowed, I became vocally aggressive toward him and began unleashing all of the things he had done over the past year to violate my sense of security, trust, and stability.  I became hostile that he would not validate my previous hurt by educating himself and I made every effort to ensure he knew that refusing to discuss the matter indicated to me that he did not love me

    With my antagonistic accusations came John’s surmounting defensiveness.  In no time we were going tit for tat in a display of whose anger could trump the other.  We created a dynamic so hostile that the tension in our home began to build at an alarming rate that neither of us seemed motivated or willing to disarm.  

                    At no time did I ever comprehend that I was talking to John in an abstract and confusing way when I did attempt to touch on the subject of AS.  At no time did it occur to me that I was trying to force so much information down his throat at once that he was still choking on my first sentence and what it meant before I began vehemently cramming more in his face to swallow.  At no time did it sink in that I was going about it all wrong, or that I actually had no idea myself what John’s Aspergers actually meant for our relationship.  At no time were either of us willing to back down on accusing the other of being a bully or proving that we were the one deserving of an apology.

    Uncovering Asperger’s syndrome initially became the catalyst for further decline in our relationship because neither of us had a clue what to do with the discovery.

                    John would later share with me (in the last year) that he DID look into Asperger’s syndrome in those early days but what he uncovered compounded his feelings of inadequacy and fear in a tragic way.  John found the same things I did… a ton of people who were angry and bitter about Aspie men who effectively labeled them wrong, cruel, and incapable of loving or being empathetic.  John read article after article that dehumanized who he was and in no time, he chose to shut the door on it altogether. 

    How could I fault him for making a firm decision to permanently ignore a mass of men and women telling him he was incapable of loving me?

                    John read rants from bitter Aspies out there who defined neurotypicals as entitled, arrogant, insane assholes as well.  Unlike me, John did not stop and consider what anyone suggested about the woman he fell in love with to be true. He read their words and rapidly discounted anything else those “Morons” had to say since they clearly, “Did not know his girlfriend.”  He did not disagree that he likely did warrant an Asperger diagnosis, he just did not want to hear what a shit-bag it made him appear to the world. 

    As I was pushing for him to get on the same page as me, he was trying to burn the entire book before I got to the conclusion that advised me to “get the hell away from him as fast as possible and never look back.”

                    Thinking about that time in our life and my behavior, I am ashamed to know I bought into the rhetoric about my amazing boyfriend/husband all those years.  I am also profoundly humiliated by the fact that he was always so in love with me he could not be swayed by anyone else’s opinion about those “like me.”  I was everything to John back then, but I couldn’t see it.  I had no idea how much he loved me then, and I am only beginning to really comprehend it now.

                    Eventually, with all of the research I had done, I submitted to the fact that the information wasn’t really helping me either.  All the books and articles ever did was provide me with a checklist of common behaviors and similar experiences from others in my shoes.  It initially enabled me to remove any doubt that John was an Aspie (without question) which helped to restore my sanity a little.  It was cathartic to find that I was not insane in how I felt or imagining things and that there were many other women out there who shared in my experience and frustration… but none of it was helping me identify how to make our lives better. 

                    After a while… it just became exhausting to read the same old story over and over again, retold by a new individual.  I still felt saddened and sympathetic to each person’s pain, but it was all the same story and none of it ever produced a happy ending.  All I could think was, “OK! I got it. There are thousands of other women standing in my shoes, but they are equally clueless on how to make their relationship better, so what the hell am I supposed to do now?”  I could not find a single beneficial success story from the other side either. Not once did I come upon an Asperger man who shared enough insight and positive results in his life to motivate John into action.  None of them had the power to convince my boyfriend that educating himself about AS would be worth the effort, and nothing I found helped me convince John to get on board with me to begin initiating a change. 

                    Asperger’s syndrome is one of the few diagnoses in the history of modern medicine to offer such pathetic and useless amounts of information about it, despite over seventy years since it’s initial discovery.  It continues to boggle my mind that outside of being unable to definitively identify a cause, there exist no proven-effective therapeutic treatments either.  There is not one single identified “intervention” to manage the associated impact it has on an individual’s interpersonal relationships that is supported by anything more than “limited data.”  This diagnosis is prevalent (as I came to discover through my own research) and impacts the lives of far more than the “guesstimated” 68+ million people worldwide thought to have it.  In all of this time, professionals have become impressively worse in comprehending, identifying, diagnosing, and treating AS!  They got so terrible at this task that they have taken the diagnosis back two decades to where it stands today.  

                    Despite slowly realizing that seeking any degree of professional assistance or guidance (from those who had written on the subject of Asperger’s syndrome in the past) was utterly useless; I still believed the answers were out there (at the time) and I doggedly tried to convince John to join me in finding them. I continued to place the future of our relationship on his willingness to read a bunch of useless garbage from false-experts who offered only vague and generic advice.  I demanded he read about couples like us despite ultimately realizing they WERE JUST LIKE US… they were failing couples who were no closer to salvaging their marriages then they were to running away from them (so this would have benefited John in no way if he had ever humored me and read about them).  I even pushed him to read blogs and articles that really just amounted to a society who was incredibly nasty and judgmental about a term they failed to even describe appropriately; all they really ever did was tear those with the label to shreds and deemed them akin to the Ted Bundy’s of the world.  

                       For a long time I kept throwing the book The Journal of Best Practices (etc.) by David Finch in John’s face and insisting he read it.  While this is a great book and one of the few ways to offer a newly diagnosed husband an empathetic view of someone they can identify with… this book had nothing to offer in explaining Asperger’s syndrome any more than the other decent ones out there.  It took years of buying and then throwing away, or deleting (in anger) copies of this book in print, audio, and as an e-book before I ever managed to get John interested enough (by threatening him) to finish a few chapters of it.  I believed back in the early days that if I could find one single man my boyfriend could identify with… that this would inspire him to educate himself.  

                       The truth of the matter was that no amount of reading, researching, writing, or talking to others with AS would have ever gotten John any closer to identifying what was going wrong in “our” relationship. None of it ever could have helped him any more than it helped me because at the end of the day… no one ever broke down what was different about an Aspie and NT brain function that led to everything else falling to shit.  Not one single person ever narrowed anything down in a meaningful enough way to extract practical solutions to begin repairing the communication breakdown.  

                   All the professionals I was demanding John agree to listen to back then had less of a grasp who he was then he had himself. Without a grasp on what was going wrong (specifically), there existed only a gaggle of licensed professionals charging money to deliver useless, impractical, and/or vague advice with absolutely no ability to prove a single relationship they “treated” ever went on to “thrive” in their marriage.  

                   If a single licensed professional in existence ever identified any truly valuable information to offer, they would be diligently writing about it and forcing it out into the world in a profound way.  If they had any “secrets to success” they would have tried with all of their might to corner the market on this because they had uncovered THE ONE AND ONLY PROVEN THERAPEUTIC INTERVENTION TO HELP AN ASPIE-NT RELATIONSHIP!   All those jackballs ever had was the same regurgitated ambiguous babble that can be found in every single common “relationship” advice, or “communication building” tips out there.  They had the same basic “secrets” found about any other diagnosis or relational hardship in the world.  None of them ever had a damn thing to delineate the challenges an Aspie endures, which are actually far more specific and cataclysmic than anything a neurotypical could fathom.  

                    Telling people to pay attention to one another and communicate more effectively is like telling a dehydrated person to drink when they have no idea where to acquire a source of fluid or what is causing their recurrent dehydration in the first place.  Maybe that analogy is stupid, but so is the advice for Aspie-NT couples who are asking for help and receiving useless information (and it didn’t take long for me to realize that sad truth).

                    Of course… at the time I was demanding, begging and pleading with John to join me in researching, educating, and diligently seeking a thorough comprehension of Asperger’s syndrome; I had not lost faith in the mental health community.  I ABSOLUTELY believed there existed professionals out there who had the power to help us. I wholeheartedly trusted that the answers existed and that John and I just needed to work together in find them.  I even naively thought that the development of Autism Spectrum Disorder had inadvertently buried countless bits of data that could help us piece together the puzzle of AS.  I kept telling myself that if we only focused my emotional energy and his intellectual capacity toward our efforts to weed through the crap, we would find the help we needed.  

                    I would have bet my soul on the fact that there did exist happily married Aspie-NT couples who found the secret to success and that if we just looked long enough, we would find them.  I wanted to find them so we could confirm that they weren’t just co-existing and tolerating one another; that they were truly in love and had a profound empathy and regard for one another; a mutually beneficial relationship.  

    I gave every bit of my heart and soul into trying to convince John that the only way we were ever going to find happiness was if he also believed in the existence of all of these things and equally invested himself in uncovering them with me.

                   I could not get John motivated even a tiny bit to hear me out, let alone begin an exhaustive (useless) search for hidden answers.  I decided I would have to find a way to drag him to a professional who could convince him they existed.  Back then… I had so much faith in the mental health profession to HELP us.  I realized I was failing to reach John and I realized I could not make any of it better on my own.  I thought obtaining an official diagnosis would be the first hurdle to overcome in my efforts, so I opted to go in search of a licensed professional who could diagnose him in the hopes that a true diagnosis would be the spark he needed to move forward in MY desire for help.  I wanted John “to want” to educate himself, and I likely took years off of my life agonizing over the fact that he held no interest in doing this.   At that point in our relationship, I knew I needed outside assistance, so I turned to the mental health community to provide it.

    I believed these professionals would be our saving grace and I actually counted on them to make everything all better.

    My God I was stupid back then.

    I CAN’T FIX THIS MYSELF… I NEED HELP

                    Since all of the books and online information left me with no avenue to get John on board with me, I decided it was time to reach out to professionals for assistance.  I put all of my eggs into the basket called, “Official Diagnosis” thinking they would undoubtedly hatch once there.  In other words, I figured once John had a licensed professional officially diagnose him with Asperger’s syndrome, he would have no choice but to begin talking about it (once again, what a fool I was). 

                    I had an exceptionally difficult time trying to locate anyone that could provide such an assessment and diagnosis for an adult.  There seemed to be several therapists willing to entertain a childhood diagnosis, but when it came to adults it appeared they were of little interest to anyone.  The last thing I wanted to do was find an unskilled professional who might misdiagnose John since I soon learned he had been awarded several diagnoses as a child that were only manifestations of his AS. 

                    After reaching out via email to some of the select few therapists who advertised themselves as being “dedicated to working with Asperger adults” (but lived on the west coast of the U.S.), I received one name a couple times.  I had finally found the right person to diagnose John who only lived two hours south of us; the only problem was that medical insurance would not cover this service and it would run well-over $2500 in total… just for a diagnosis!

                    Strapped for cash, I began picking up extra work shifts to pay for John’s diagnosis.  The added work stress and my continued attempts to get John to talk to me about Asperger’s syndrome soon took a toll on our relationship that was so incapacitating it could no longer be ignored.  Our fights became constant and increasingly nasty.  One night while arguing I said something purposely vicious to John (insulting his manhood) and in turn, he spat in my face.  This was it for me… something was going to change immediately or I was ending our relationship permanently.  I decided to do something that was frightening to me because I KNEW it would infuriate John and considering I never thought he would degrade me in such a vile way (by spitting on me), there was a part of me that felt hesitant in pushing the anger he had inside of him.  At the end of the day, I was so disgusted in him for spitting on me that I was prepared for our demise and went out on a limb with a final “last ditch” effort to salvage what was left of my own ego. 

    I chose to finally reach out to John’s family and tell them the whole truth about what was really going on in our relationship.

    THE FAMILY IN THE SHADOWS

                    John had a sister one year older than myself who was a teacher.  I decided to reach out to her and constructed a very long email (I know, shocking I would write something in great length) and took a deep breath as I hit send.  I had met his family several times by then from both visiting Michigan (where they lived) and having them come stay with us in Florida… but I never spoke of the difficulties between John and I and he was on his best behavior in their presence.  I typically do not have difficulty getting close to people, and John’s family was amazing in every way (truly kind and loving people) but there was an awkward distance between us from the beginning that I hadn’t understood.  It was as though we all wanted to ask one another questions and share information about John but were afraid of rocking the boat and upsetting one another. 

                    Since the fighting was incessant during that time and we were on the verge of demise, I took a chance and spilled my guts to his sister telling her all about our challenges and my suspicion of Asperger’s syndrome and asked her to please give me her insight, opinion, and any other information that could help us get through our difficulties.  I was very fearful I was just going to anger her and she would reply to me with something along the lines of, “You are a bitch who clearly does not appreciate my brother, how dare you suggest there is anything wrong with him!” 

                    I was desperate though and more than anything… I just wanted answers and information that John was not sharing.  I also really wanted them to reassure me he was a wonderful guy deep down who was NEVER violent in any way.  The spitting incident had me rocked to the core that he would eventually escalate to physical aggression and I had zero intention of sticking around for that experience. 

                    To my relief, I received an outpouring of emotion, empathy, compassion, support, and information not only from his sister, but from his equally emotional mother.  I received phone calls filled with tears and gratitude from his family because they felt as though I had finally given them the answers they always longed for.  His sister reassured me that much of the fighting I described mirrored fighting she and John engaged in throughout their youth and that he was absolutely NEVER physically aggressive or violent, just quick to escalate verbal hostility in a way that never matched the reason behind it.  She validated that he always had issues with empathy and that despite seeing this, she also knew in her heart he was a compassionate person without malicious intentions.  She shared with me John’s challenges in executive function like initiating and maintaining employment and that he was an incredibly hard worker but his father had to coordinate almost every job he ever had.  This explained why John did not want to talk about his previous working experiences and also why he would not seek out employment in Florida.

                    I heard stories of a desperate mother who loved her son tremendously and tried to go to the ends of the earth in search of a proper diagnosis for him but was met with dismissive explanations for his behavior and prescriptions to “fix” him.   She was told he had ADHD, Oppositional Defiant Disorder (ODD), and other childhood diagnoses that go hand in hand with Asperger’s syndrome.  His mother cried as she recalled how she was always given different drugs to feed him and told that therapy was not recommended at that time and to “give the medications a chance to work.”  She had sought out special education classes for him because he had so much trouble with social interaction, but was told those classes were only for children with “real disabilities.”  She talked about how she had to set up playdates with her friend’s children and even then, John would usually isolate himself in a corner and play with his toy cars and stack them up or line them in order repetitively. 

                   It was so awful to hear her pain when she expressed all of the love and agony dedicated to identifying why her son struggled so much and how, despite waiting months to see top pediatric psychiatrists, she was always given an explanation that did not fit.  His mother sobbed as she shared the last time she begged for help and screamed out, “You’re wrong! Something else is wrong with my child, please… help him!” but got nothing in return that ever made his life better. 

                    Without any answers and without any practical tools to help their son live a happy life whereby he could successfully interact with his peers and adults, his parents did what they could for him.  They intermittently sought out professional help and kept up with medication therapies and school reports on his behavior, progress, and potential options for improved social functioning. They taught him discipline and tried to reinforce right and wrong.  They protected him when he was too terrified to function and tried to withdraw from life and provided enough security and support to encourage him to progress in maturity and responsibility within a context he could acclimate to.  They repeatedly failed at getting him to initiate work and independent achievements so they coordinated the opportunities for him and then ensured he followed through.  John learned to be a responsible and hard worker and made good on commitments, but only if he did not have to initiate them himself. 

                  Every seemingly normal and basic milestone a neurotypical teenager and young adult goes through were an intimidating challenge to a young man who only knew to anticipate criticism, blame, and character assassinations when he went at them unassisted.  John’s parents did their absolute best to teach their child and adult son how to behave as a responsible and kind man and hold strong values with good moral character.  They gave him a religious foundation and they served as examples of supportive and generous humanitarians.  They tried everything, thoroughly exhausted themselves, and became emotionally drained in the process.  John saw his mother cry a lot (according to her) but he still tells me he does not remember this.  

    How hard it must be for every Aspie parent who is in the dark and tries to do everything to raise their child well but cannot make sense of some of their behaviors and reactions to people and situations.  How do you protect a child when you do not understand what is terrifying them?

                   

                    While everything John’s mother told me about his life before meeting me was painful to hear, the most gut-wrenching of all was when she audibly sobbed as she choked this out:  

                    (I am quoting this based off memory, but this was so emotional to hear that I am fairly certain I am close to being accurate in what she said)

                   “I used to fall asleep every night praying John would someday find someone who would love him.  He is such a good man, he has such a kind heart. I prayed someday he might become a husband… or maybe even a father, but I cried myself to sleep every night thinking my son would never get this and it broke my heart, it just killed me.  I didn’t know what to do, we didn’t know how to help him. I just wanted him to have the same opportunity everyone else got. John deserved the chance to just feel “normal.”

    If that doesn’t break a fellow mother’s heart and stab the very center of what empathy entails… I don’t know what could.

                    Both John’s mother and older sister told me that they wanted so desperately to reach out to me in the past but were praying John did not have the same “issues” with me that he had with interpersonal relationships his whole life.  They had a battle within their minds about whether they should question how John was behaving toward us or just stay out of it.  On one hand, they were worried for B and my emotional stability living with John and felt guilty for not asking if we were doing ok; on the other hand they did not want to allude that something might be “wrong” with him… because what if, by some miracle, John finally “grew out” of his previously “different” behaviors. 

                   Ultimately, they opted to pray for John and our “family” and remain silent because the simple fact that John had willingly chosen to walk away from all that was familiar to him his entire life to live with a woman and her daughter… to leave his family’s side (the only security he ever had) to be with this woman… at 31 years old, something had obviously changed for him.

                    When I consider that statement now… I cannot believe my husband loved me so much back then he truly walked out on everything that made him feel safe and everything that held meaning to him… he moved far away from the only people who ever loved him and believed he was a good person… and he did it…

    FOR ME 

                    If I consider everything I know today and reflect back on our life together in Florida, I realize I missed how hard every day must have been for John.  I never acknowledged or appreciated how horrifically challenging it had to be to try to behave in a parental role, a partner role, and an independent adult role all at once for a man who never even had strong interpersonal peer relationships growing up outside of his family. 

                   How rough it had to be to love me so much that he lived in sheer panic I would discover he was “not normal” and did not have a stable career or healthy adult relationships (not that he did not have girlfriends, he did… but that’s another story).  John was likely so overwhelmed in that first year we lived together by this woman who moved a million miles an hour (and talked even faster) that he must have been exhausted mentally every time he went to sleep at night.

                  I just didn’t know these things back then.

    I couldn’t appreciate all of the ways my boyfriend had shown me how important I was to him.

    I saw the opposite of everything he was feeling inside because I was too blinded with my own narrow focus on how MY brain processed information, that I faulted John when I assumed his mind worked the same.  I never considered he had a completely different and unique processing ability.

                       I just didn’t know, and despite wishing I could have a “do-over” and know everything I know today… I cannot.  I realize I should not be faulting myself for this, as no one else was able to make sense of John either his whole life because he was such a contradiction to the stereotype of Aspies (that is unfair and often incorrect) that his social awkwardness was often mistakenly perceived as arrogance, indifference, or narcissism.  John did not have his nose in books or talk in exhaustive length about computers or sci-fi related subjects (just to hit up the typical stereotype).  No one who casually met John back then, or even today would believe me if I said he grew up feeling insecure and socially isolated by not only his peers, but society in general.  John is just over 6ft tall with strong features and a well-proportioned body.  He looks “strong” when you look at him and his general appearance is intimidating to men and women alike. Women tend to find him very attractive and his large crystal-blue eyes don’t hurt this (if you can get him to make eye contact long enough to see them).  

                      When I met John I was instantly taken aback by how good looking he was, as were my sisters, cousins, and every other female family member who met him at Jeff’s memorial service.  I watched many women develop nervous giggles when they tried to talk to him over the years and observed just as many men appear threatened in his presence. John has a deep and overpowering voice when he speaks and unlike those who speak of sci-fi and tech-related interests, John loves “traditionally male-endorsed” things like cars and the UFC (but God forbid you ask him how an engine works, or what a car noise is, because you are going to get an 18-hour long in-depth information session you will not be able to keep up with).  His information-sharing is less boring when you sit beside him to watch a UFC fight and he not only spits knowledge about every fighter’s strengths and weaknesses, he can call damn-near every fight right down to the round and way a fighter will win or lose (barring some fluke-occurrence).  For anyone who watches UFC, you may appreciate that for a very long time I really thought John was recording fights and then watching them with me (pretending they were “new”) to impress me.  He would say everything Joe Rogan (the actual UFC commentator) said about 30 seconds before Rogan could get the words out.  It is incredibly fascinating to watch a UFC fight with John and if he ever goes to a bar at night when a fight is on, you would never guess he had social inadequacies because he is “on fire” and everyone wants to sit by him.  John educates himself about politics, current events, random trivia, independent films, etc.  He knows “enough” about so many topics he can engage in short banter about damn-near anything you can think of and actually has facts and legit knowledge behind his words.  

                   That is the thing about John.  He truly comes across more like the “popular guy” that “got all the chicks” in high school than the stereotype he would have been thrown into if anyone could have known what was really going on in his mind.  He shines in a bar scene because the women all think they are going to get him to go home with them and the men enjoy talking to him for hours about typical “male” hobbies and interests.  He is mechanically-genius and can build a house from the ground up and do everything himself from pouring foundation to building the external structure, and he does it perfectly. He can do anything related to building from flooring to tiling, electrical wiring to plumbing.  He can work with heating and cooling systems, design and build custom kitchens, bars, incredible decks and intricate gazebos, etc., and he does everything with meticulous craftsmanship.  The list of John’s talents go on and on and none of the talents and interests John has deviate from enviable skills and hobbies that any “typical” man would appreciate. John has an uncanny ability to make people laugh, although often through sarcasm (all of these things about John were why Jeff was so enamored by him).  

                    No one could see that John never had a clue when women were flirting with him or that he was so nervous to be labeled “weird” or “abnormal” that he learned to prep himself for social interactions by studying enough topics of interest to get through small talk at parties or social gatherings by the time he was a young adult.  No one views John’s argumentative or sarcastic nature as protective mechanisms he built over many years to defend himself against chronic character assassinations, they just perceive them as the behaviors an overly-confident man (who rarely gets kicked off his pedestal) might display. John just does not give off the image of a frightened, anxious, or intimidated man and he certainly does not carry himself like a man who was fraught with insecurity, fear, anxiety, and loneliness his entire life.  

                   I don’t think John ever had a clue how he was perceived by others until I began telling him either.  At the time John and I had about two years or so under our belt as a couple, I simply could not connect all of the dots of his external appearance to who he really was inside.  Even when I stepped back and read about Asperger’s syndrome and thought I had nailed down the information, I often found it incredibly challenging to apply this knowledge to the man who stood before me.  More often than not, I had trouble seeing past the snarky, argumentative, and condescending jerk who was lying beside me; despite knowing with absolute certainty John had Asperger’s syndrome, his outward character always appeared such a staunch contradiction to the text that I subconsciously doubted it fit him for longer than I realized.    

    It was a remarkably difficult challenge to stop reading my initial perception of John (and what he must be thinking) to get through that he was actually suffering (inside) in a horrendous way… even if I couldn’t see it.  

                  Hearing John’s family openly talk about his past made me appreciate John from a new perspective.  All I wanted was to get him a diagnosis and have his family reassure me he was the great man I saw in the beginning; the man I always knew existed in my heart.  I just wanted answers.  

    Those answers were still three VERY LONG years away at the time I sent that email to his sister though.

    WE’RE IN THIS TOGETHER

                    At the end of the day, John’s family wanted their son/brother to be happy, but not at the cost of my or my child’s happiness.  They validated everything I had experienced and furthered to confirm that they believed Asperger’s syndrome accurately answered all the questions they had for so long.  Like me, they felt incredible relief at first… followed by an overwhelming degree of guilt for never knowing.  Then came the realization that poor John was never given the chance at the happy life he deserved and could have had if they had only known about AS.  No doubt it also opened a ton of old wounds from his sister(s), particularly his older sister who had suffered an incredible amount of verbal and emotional abuse by a brother who did not know what he had been putting her through throughout their childhood (I do not think he is willing to acknowledge that to this day).  

                   John’s family had several heart to heart discussions with him via telephone after my initial contact with them and since he was loyal, respectful, and incredibly adoring of his parents… John agreed to go in for a diagnostic assessment (something I could not even get him to entertain a discussion about).  His parents did not just offer to pay for John to get an official diagnosis… they insisted on paying for it.  They also participated in the diagnostic process via telephone and gave the therapist all the childhood and young adult information about John they could. After a very exhaustive day for John, he was given the official confirmation that, he did indeed, HAVE ASPERGER’S SYNDROME.

                    It seemed that things were on the mend with John and I after the diagnosis was made and it made me feel less alone once his family and I were closer to one another.  It seemed like things were getting better only because I was still imagining the “world to come” without realizing how far away it actually was.  John did not joyously begin researching what the diagnosis meant (as I had still hoped for) but he did allow me to talk about it a little… for a few months.

                    Wonderful as it was to have an official diagnosis, at the end of the day, it accomplished jack shit in mending our communication difficulties or easing the previous tension in our relationship (that would quickly become our constant).  The professional we found did diagnostic assessments, but she did not offer therapy for adults.  We could not find relationship counseling anywhere with a therapist who had ever worked with adults who had Asperger’s syndrome.  I had been to therapists for relationship help in my first marriage.  That marriage ended in divorce (despite still loving one another).  I watched my first husband go to a few different therapists independently (some of which I forced upon him) and that ended with him eating a bullet.  John had been dragged into therapy several times throughout his youth… he was awarded various (mis) diagnoses and a dependence on synthetic drugs (to this day) that never once correctly identified the true reason behind his lifelong struggles.

                    By that time in my life, I was not willing to trust my future with John to another ass-clown yielding a license that they basically “paid for” since I felt none of them earned or deserved it.  I felt this way because of how little any of them seemed to know about Asperger’s syndrome (something I knew was prevalent in society by that point).  I know that sounds harsh, but outside of the Suncoast Hospice counselor who was there for my daughter’s initial grief counseling… my experience with effective counselors had been unsuccessful (at best).  My research of an entire population of adults like my boyfriend who were quite effectively robbed out of the life they could have had (even when the diagnosis of Aspergers existed in his teenage years) made me develop a bitterness toward the very facet of healthcare I once wanted to become a part of.  

                       If the internet had nothing to offer me by way of cognitive behavioral strategies with proven success in a relationship like ours, and books came up equally short, I had found myself at an impasse I could not see beyond.  During this time, I continued to search for answers, recorded our life experiences in a crazed-scribble fashion, tried desperately to get John to read with me (fail), and prayed (a lot) for miracles. 

                    Nothing changed because…               Nothing had really changed.

    The only thing that changed after John’s diagnosis was that I now had the love, understanding, and support of John’s family to help ground me.

     

    SICK CYCLIC SADNESS

                    John and I became balance scales defined by one another.  The more stress one person had, the lower they dropped under the weight and pushed the other further away.  Every once in awhile we would find ourselves equally balanced and enjoy a brief moment where we met one another in the middle and enjoyed the day.  Usually, my end of the scale was on the bottom and I wasted my energy trying to offload some of my weight onto John’s side.   The weight was always too heavy for me to throw and he was always too far away to notice my exhaustive efforts anyway.

                    In a strange sort of way, we both gave up and allowed life to pick away at us.  I spent years searching for an epiphany and resenting John for not giving a damn about his own diagnosis and how it adversely affected my emotional well-being… John spent years defending himself and never really understanding what I wanted from him and why I was such a volatile person.  I had somehow numbed myself into thinking that our problems would resolve themselves, or that someday John would “wake up” and miraculously fix everything. 

                    Our fighting got more intense and hostile and would dissipate as quickly as it came on.  This happened because I would exhaust myself to tears and submit that I “could not get through to him regardless of how hard I tried” so in order to keep the peace, I would just pretend everything was “ok” again.  I would spend months prepping myself to leave John and writing down every reason he was failing me and not progressing as an adult or boyfriend, and then just stew in my anger.  I could not leave him despite seeing no progress in his efforts inside or outside of the home because every time I tried to, I would think of the big picture and why John behaved the way he did.  This also inspired me to try to come up with another method to bridge the gap between us.  

    Sometimes when I think about how miserable I was back then (and even a year ago), I cannot quite figure out why I chose to stay with John.  Our chronic fighting and general unhappiness was more than enough reason to justify ending our relationship, yet neither of us wanted to leave.  

    Sometimes love just defies logic.

                    I spent a very long time clinging to the hope that I would find the person who had answers for us, I searched every corner and turned over every rock in this attempt.  We found a good therapist once that helped John open up a bit (he was a great substitute for alcohol).  It had actually taken my threats to kick John out and having his family push it to even get him to agree to go willingly.  It also took the humility of accepting his parent’s money to pay for the sessions because we could not afford them; I know they felt like they needed to do this in order to make amends for not realizing his diagnosis a decade earlier… not something John or I ever blamed them for.

                    Despite that counselor being pretty amazing for someone who had not actually worked with a couple whereby one person had Asperger’s syndrome (that he knew of), I was able to glean a lot of information from John during those sessions. 

                    Therapy came to an abrupt end one night when John and I got in such a bad argument (over KEYS) that we both got physically aggressive with one another with some grabbing, pushing, and kicking.  It was not as horrendous as I believed it to be at the time (in retrospect) but to me… once things moved from yelling to physical contact of any kind, it was time to get out.  John had finally stepped over my “line in the sand” and I told him he had to leave, permanently.  

                     John packed up his belongings and moved home to Michigan and in with his parents in November 2013.  I spoke with his family often and everyone shared the same frustration I did.  They knew I loved John and they knew he loved me but they also believed it was John who was failing us, by not accepting his diagnosis and changing his own behaviors.  No one knew how to help make things better between two people who really loved one another but failed miserably at communicating.  

                     No one knew how to accomplish this because no one actually had a frickin clue what the communication breakdown even stemmed from.  Asperger’s syndrome and all of it’s many characteristics never accounted for the true reason John was not “getting” what I kept begging him to understand.  There was no amount of Aspie-Awareness that could have possibly proved beneficial at the time because there was not a single Aspie-expert out there who ever identified what I came to realize THREE YEARS LATER.

    (Not even the man I still value the most, Dr. Tony Attwood, had narrowed down the only issue that would eventually change everything)   

                     John openly admitted to being a “failure” in our relationship and “not the best man he could have been” toward me, but that wasn’t going to fix anything.  It wasn’t going to fix anything because the problem rested more on the neurotypicals in his life than on himself (but Hell if I knew that at the time). John was always willing to receive and consider the information and advice we had to offer (although it always seemed quite the opposite)… but we didn’t really have any.  I had no idea how to effectively communicate with him in a language he understood because I had no idea what language he couldn’t understand.  I thought I was verbalizing everything clearly but I was using a whole load of non-verbal and hidden/obtuse language to the extent that he rarely had a clue what I was ever really talking about.  

    I didn’t know.

    I honestly believed John was just being difficult, argumentative, defiant, selfish, indifferent, and simply refusing to listen to what I was saying.

                     My family remained non-supportive because they could not comprehend Asperger’s syndrome and certainly did not understand why I was so hell-bent on making this relationship work.  They did not dislike John by this time (sharing his diagnosis helped with that) but they wanted a better life of happiness for their daughter and granddaughter.  When John went to Michigan that November, I was left to do some pretty heavy soul searching… alone.

                    I was on the cusp of huge life changes; I would be graduating from my final nursing program, going to training for a few months out of state, and then picking my daughter and pets up and moving us overseas for my first job in a different field.  I had a million and one reasons to not consider John in those plans and only one solid one to sway me otherwise… I frickin loved the man.

                    After about six weeks of reading, researching, praying, and crying my eyes out… and John finally promising to educate himself about Asperger’s syndrome (my dumbass still thought this was part of the solution); I decided to take another chance on our insane NT-Aspie relationship (John never held up his end of that promise while I was away from him those six weeks either).  My daughter and I flew up to Michigan and spent the holidays with John and his wonderful family.  My poor family (who really are equally wonderful) were devastated that I would leave them for the holidays (taking their granddaughter/niece away from them) in order to spend them with a man I had just broken up with, that they believed treated me poorly.  This was a very tough decision since I was likely going to miss the next three holiday seasons with them having to move overseas.  

                    Just as John walked away from everything he knew to move to Florida and take a chance on me… I had an intense instinct to risk everything and take a real chance on him.  Leaving our family for another person had to be painful, but to my family that Christmas, my choice was akin to telling them they were not important to me at all (in their opinion of course… not mine).

                    The holidays were special that year in Michigan and John and I decided to keep trying and promised to treat one another better.  John planned to move overseas with us and returned to Florida to help us prepare for the transition.  We also attended my little sister’s wedding that January (to Michael) and they asked John to also play a role in the wedding (which was important to me).  It was very heartwarming to see him escort my grandmother down the aisle (with his nervous eyes blinking a mile a minute) because I felt like he was officially a “part of my family.”  

                    My sister and Michael’s wedding was still difficult for me emotionally because I always imagined John would propose to me (long before my sister got engaged) and really thought he would do it that Christmas… he was planning to move across the world with me but never thought about making that commitment?  I still watched my sister’s relationship with envy wishing John could love me as much as Michael loved her.  It totally did not help that they walked down the aisle to John and my “song” and got married in the hotel where John and I had our first kiss (and I first fell in love with him). As happy as I was for my sister (who had no idea she had randomly chosen a song or location so significant to my relationship), it was very emotional for me to consider that John would never look at me or treat me with that degree of compassion or love.

    OVERSEAS 

                    John had Asperger’s syndrome.

    I was a Neurotypical (and a ridiculously empathetic one at that).

    We both had a “label” yet not a single fucking person on the planet had a damn clue what that meant for our future, had a shred of useful advice to give us, or could prove that another Aspie-NT couple ever managed to find anything but misery in a relationship together.

                     John and I made a commitment to take on this “new” life together overseas and start over, but we were ill-prepared for the incredible stress our new world would throw at us.  We had never learned to communicate effectively and we mostly existed by sharing common ground in hobbies/interests and humor. Emotional intimacy as a couple was nothing but a pipe-dream to me.  I was sad and longing for something more and John could not see this in my eyes or hidden messages, and now we were living on an isolated tiny island in the middle of the damn Pacific with even less chance of finding help than we had in Florida.

                    John lived on edge and walked on eggshells with me because he never knew when I was going to jump down his throat about something or accuse him of being a jerk to me.  He never realized I had been communicating the buildup of every one of these events weeks before they happened because I never spoke them aloud (I figured he was fully aware of everything and seeing the same reality I did but choosing to blow my feelings off).  Despite educating myself about Aspergers I was never able to fully grasp how it truly impacted our relationship or what either of us were doing so wrong. 

                    Outside of his uneasy feeling I might randomly explode at any time, and his boredom on the isolated island we lived on… John was otherwise content.  John did not feel as uncertain and hopeless about our relationship as I did.  John did not have a clue he was ever causing me pain so he did not feel badly for the pain I was in… he truly never saw it anyway.  John was always looking at the positive and finding a way to be optimistic about our life together.  John did not compare us to other couples and long for the happiness and intimacy they had, he didn’t think we were lacking anything, he never knew any different, so he did not desire any more.  John did not know why I was always so unhappy, or what he could do to make it better, or understand any of the demands I placed on him to be a better partner… unless they were task oriented/tangible things he could physically accomplish, which he tried really hard to get better at.  John did not feel disappointed in who I was, John appreciated who I was (even though he thought I was mentally unstable).  John was just happy every day I chose to be with him.  John was happy he had a girlfriend and even happier when that girlfriend (apprehensively) became his wife, because John stopped being so afraid I was going to leave him for someone better.  John never wanted to change me, and John never wanted to hurt me.  John just wanted me to stop crying all the time and telling him he was purposely being mean to me.  John did not like the constant rollercoaster of emotion I had nor the times I screamed at him and “forced” him to defend himself and scream back at me.  John did not understand why his stepdaughter was also an emotional basket-case or why his wife and stepdaughter always seemed to exclude him from conversations or gang up on him.  John did not appreciate the days I was too angry and emotional to be around and he “had” to avoid me so he could avoid a fight.  John still thought the rollercoaster ride was worth it every single day he woke up next to me because, he loved me.  John always loved me.

                    Poor John.  

    I had no idea he viewed our relationship in such an innocent and optimistic way.

                    From outside of John’s view, John was a cold and cruel man who still refused to contribute financially to his family (he had perfect excuses now) and was a long-way-away from being a “decent” domestic partner.  John was not kind or compassionate and would sigh or ignore his wife when she spoke of her increasingly stressful and physically exhausting job.  John would share his irritation over his wife’s “laziness” on the few days off she had during the week and did not consider that she was being pushed to every limit she had and was equally isolated and alone on this tiny island.  John was living with a woman who felt incredibly unloved, unwanted, unappreciated, disrespected, used, ugly, stupid, and betrayed by the man who promised to provide her with the opposite.  

                    John married a woman who was at her wits end after her final attempt to get John to “want” to work on communication failed; he married a woman who believed her only remaining hope was that “marriage” would inspire him to love her enough to want to make positive changes for the future.    

                   It was a wicked dumb thought-process to believe becoming a “husband” would motivate John to educate himself about his diagnosis and miraculously fix everything that had gone wrong, but desperate people do desperate things, and I was desperate for him to change his behavior!  I loved John and it was so much easier for us to be married with our new living arrangements, so I did not think much about the added “title” in the same way John did. 

                  Before we got married (for a fleeting moment) John and I had a run of happy months together with very little arguing.  It seemed like he was really trying hard to communicate with me.  This was the only thing I begged for all those years, so once he showed that level of initiative, it seemed like a great idea to finally get married (there was no romantic proposal, John never asked me to marry him at all and we shopped online for rings).  After this decision was made, we continued to have an abnormally peaceful and happy run in the months leading up to the wedding.  I attributed it to John putting in more effort around the house and in “sharing” his feelings with me (which really did look like a painful effort in and of itself for him).  It never occurred to me (until recently) that the reason we were happy during the six months leading up to our wedding was that I made us happy.

                     I had been working so much and was so exhausted that John put in extra effort to not add more weight to my taxing life (and I finally verbalized what I wanted him to do when I was not home to help out). Once I set the ball in motion to get married and put down deposits on everything, I was so afraid of our good times imploding that I tried hard to leave any emotional or negative words out of my speech.  I was very aware of the words that came out of my mouth; careful to not set off an argument or fight that could drag into months of misery and an embarrassingly cancelled wedding.  I basically avoided any degree of emotional attempts at intimacy so I could avoid feeling angry when John shot them down (pretty pathetic, I know).

                 If only I realized then that changing MY method of communicating changed our happiness, I would have saved myself another six months of misery when we returned to our island home as husband and wife.  

    I will gleefully talk about our disastrously-appropriate wedding(s) in Florida and Michigan eventually… complete with emergency surgery, torrential down-pouring for our beach ceremony, and my epic breakdown at an airport in Tokyo while crying out, “I never should have married you!” in the security-screening line on our return… but that is another post.

                   What was important in the period leading up to that day, was that John and I remained peaceful and happy for a long enough span of time that we decided to get married and made it all the way to the exchanging of vows in front of our family (both in Florida and again in Michigan for a second reception).  

    AND THEN WE GOT HOME

                    Once we returned home, everything just fell to shit again. John wasn’t talking, I was angry, and we lived in a highly tense world.  I really thought things would magically improve.  At a minimum, I figured they would remain as good as they were months before the wedding (yes, even people in their late 30’s are that naive). Our days were anything but happy.  The fighting was bad… so bad that I had given up all hope John was ever going to treat me well and became withdrawn and nasty.  He was spending a lot of time with a new friend he made down the street and making some money off of building game boards he and the friend designed and painted.  I was resentful that his new friend motivated him to do more than his own wife could, and I was especially pissed off that John would only drink alcohol with his “new buddy” (and his buddies) but refused to with me.  

                    I loved drunk John and I missed him.  Drunk John loved me, and he told me so. Drunk John told me I was important and perfect and told me how appreciated I was.  I hadn’t really seen Drunk John since our amazing Wednesday Date Nights (before I became obsessed with Asperger’s syndrome), so I was beyond furious that these new stupid douchebag jock-type dipshits got to see the only side of my husband that ever made me feel truly loved.

                   I was working night shifts almost entirely when we returned from our wedding, and my job was incredibly high-stress.  I was gaining weight (because my sleep and metabolism were shot and I never ate) and feeling bad about myself in general.  I came home to a filthy house (John stopped trying since I was chronically pissed off and negative regardless of what he did) and he slept until after noon.  John wouldn’t stay up with me at night on my days off (he wanted me to shift my schedule to days on my days off and then bounce back to nights for work) and I was angry about that because I never got to see him.  I was enraged when he managed to hang out with his friends till the early morning hours (drinking) on the nights I was working but wouldn’t accommodate that same schedule when I was not.  

                 Everything was making me mad and I was so bitter, exhausted, deflated, and angry that I made every effort to deflect it onto John (who was still not looking for a job and making me resent the future of unbalanced misery I had in store).  I began demanding that John read about his disability or I was going to divorce him (yeah, I threatened the Big D… and I meant it too).  John would sometimes pretend he was reading when I was at work, but the book never seemed to have been opened, and his internet history (when he didn’t clear it out) never seemed to have a single search related to fixing our relationship or him finding a way to better his life or our family.  It made me hate him when I would look at his internet history and see countless hours of searching information about cars, the UFC, random news, fishing, and sports trivia used to engage conversation with his new friends… but never a single thing about being a husband, supportive parent, fixing his failing marriage, or… Asperger’s syndrome.

                 I was miserable in a way I had never been before.  I was six years older than when John and I began and I was still fighting for the same thing from him with no real progress so I felt like an incredible loser. I cried every day I did not work and when I cried… John would get angry and call me names or say, “Jesus Christ… here we go again” and then ignore me for the night… or days after.  My life was falling apart so quickly that I no longer felt like I had a grip on anything and I lost all of the personal motivation to even succeed in my own career.  I was physically unwell and having multiple health issues (and my insomnia mixed with excessive sleep/fatigue and poor nutrition were not making anything better).  There was nowhere I could even escape to because there was little to do on the tiny island we lived on.  I had little left of my old self to cling to and was convinced I would never feel happy ever again.  I felt like I had sacrificed myself to give John a chance to have a “normal” life and I truly hated him for it.  

             I wanted a fucking normal life…

    I thought had earned it.

     

                  I blamed John for everything and anything and we went weeks without saying a single nice thing to one another.  We stopped being intimate entirely and were both miserable.  I begged him to leave and he would scream that he was going to get on the next plane… I would book him a flight a week out and then cancel it in time to get our miles back a day later when I had a moment to think about how he would be miserable if he went back to Michigan and my guilt would override my unhappiness.  I would write… and write… and write. I stayed up all night on the back porch when I wasn’t working diligently researching Asperger’s syndrome and every scientific study I could uncover in the hopes of stumbling on forgotten research that had secrets to getting through to my husband.  

                  If I wasn’t sleeping all day, or working at night, I was sitting on my back porch glued to my computer.  I was hell-bent to turn over every leaf I could find and decided that when I truly had nothing left to type into a search engine…

    I was calling it quits  

                 I stopped calling my family and I stopped doing anything but researching, writing, crying, sleeping, and working.  I could not even see how depressed John was becoming in the midst of all of my own misery.  I was set to go to training in Texas for a month and a half and then go see my little sister and Michael’s new baby, my beautiful niece.  I was certain my marriage would be done by the time I returned.

    BUT SOMETHING HAPPENED

                 When I was in my training in Texas I found myself missing John terribly. I had no access to an internet connection and severe insomnia so I stayed awake all night in a small house that held four bunk-beds.  I began replaying my life with John and everything that went wrong between us.  I was beginning to put the puzzle pieces together, although it would take a few more months to make sense of it all.  

                I returned to the island with a refreshed mind and believed everything was about to get better.  In my head, things were starting to make sense.  By the time I located the light bulb in my brain that needed to be turned on, John was deep in his own depression. He was miserable, missed his family, felt alienated, unloved, and attacked at home. John was at a breaking point and was actually instigating fights.  He had me second guessing the puzzle I thought I had finally put together while I was in Texas.  I knew I was only missing one piece, but John’s depression eventually zapped the motivation right out of me to keep searching for it.  

    We fell back into the same sick cycle.  

    We did not like each other.  

    With no reason to keep going, John and I decided to call it quits.  

                    By some divine intervention, John broke down on the day he was supposed to fly away from our home and marriage and began to sob.  Then the light bulb turned on and I was able to suddenly see the missing piece I had been searching for all those years…

    We were going to be ok.  Not just ok.  We were going to be HAPPY! 

     

    The below post picks up where this story of “us” left off:

    HOW TO TEACH EMPATHY TO SOMEONE WITH ASPERGER’S SYNDROME PT 1

     

     

     


  • WHY IS IT UNFAIR TO SAY ASPIES HAVE ZERO EMPATHY?

    BECAUSE IT’S NOT TRUE

     

    I received a comment recently that I wanted to share as I think it will be a common source of confusion for others:  

    Please read my definition of cognitive and affective empathy HERE first (if you haven’t already)

     

    David wrote:  

    “I’m confused. You say aspies have zero empathy, but elsewhere you say they have affective empathy, just not cognitive empathy. From how you explain it, what you call “affective empathy” is what I have always thought was “empathy”. What you call “cognitive empathy” sounds like reading someone’s thoughts, which sounds impossible, but doesn’t sound like what I think of when I think of empathy. Isn’t it a little unfair to say someone has zero empathy when they do have affective empathy?”

     

    David,

    Awesome comment because you are absolutely correct! While my posts will center around all-things good and amazing about my Aspie husband in the future, I chose to begin this blog with a lot of the mis-information out there. If you read my WHY AM I SO ANGRY? post, you might think my husband was evil and I was a horrifically abused wife too dumb to leave him. That is how I felt for a long time, and how a lot of spouses (like myself) feel because they do not grasp the big picture yet. I wanted my posts to grab the current feelings of many of the wives out there… so they could first empathize with ME and realize I get what they are going through; hopefully lending some belief in my current thoughts and their desire to implement my suggestions in their own marriage.  My intention of striking a chord with the desperate NT wives out there is also why some of my post titles are seemingly negative and unfair to those with Asperger’s syndrome.  

    I can appreciate how the post you commented on WHAT DOES ALTRUISM HAVE TO DO WITH IT? seems very biased toward praising neurotypicals while blaming Aspie husbands for lacking empathy and damaging our relationships.  It was important to me to first acknowledge the incredible strength and mentality of those who fall in love with Aspie men because… I am going to be flipping it around in most of my future posts, beginning with this one.  

    I intend on showing all of the reasons our Aspie husbands are of equal strength and good intention and these same NT women often unknowingly create much of the misery in their marriage.  Since I began this blog entirely for neurotypical women struggling in their marriage, posts like the one you commented on do give confusing messages. Understanding the difference in cognitive and affective empathy, and how the function of both processing mechanisms paralyze communication, is the first step to finding a happy NT-Aspie union.  

    I never expected so many adult men and women with Asperger’s syndrome to take the time to read what I wrote and post their responses to it.  I am both delighted and humbled by this.  

     

    Back to why my words are unfair:

    It is incredibly unfair and cruel to suggest someone with Asperger’s syndrome does not have empathy in general. This belief is what destroys countless lives every day. This statement is what I want to change when people hear the term Asperger’s syndrome.

    Just like you, affective empathy is what EVERYONE thinks of when they hear the word.  Affective empathy is the most important part of what it means to be a compassionately empathetic individual. Affective empathy is what humanizes us and the common bond we have for one another that creates all the best things in life.  Only sociopaths (aka, psychopaths) lack affective empathy.  

    Obviously there exist other neurological anomalies and injuries that can debilitate empathy, but they also impair so many other neurological abilities that they are incredibly apparent… unlike Aspies and sociopaths who are elusive and have only empathy deficits to account for their cognitive differences with neurotypicals.  Again, sociopaths lack affective empathy but have cognitive empathy, Aspies lack cognitive empathy but have affective empathy (polar opposites).

    There is confusion about this because no one realizes there is an entirely different version of empathy (the cognitive part) that symbiotically functions to enable and enhance the affective part for neurotypicals.

    When someone cannot utilize their cognitive empathy the way the majority does, it stunts the affective part. It does not eliminate the fact that affective empathy exists and is fully functional for those with Asperger’s syndrome.  The absence of cognitive empathy disables the ability to show affective empathy appropriately based on the expectations of an NT (not their fault, this is because social norms that deviate from what NT’s comprehend as normal are viewed as negative and wrong).

    I am going to assume you have Asperger’s syndrome? I may be wrong but I am making this assumption based off of your summation that cognitive empathy sounds like “reading someone’s thoughts” (which it kind of is), and that does not sound logical or possible to you. If I did not possess this ability (and understand that those deemed neurotypical also do) than I would agree that such a concept sounds ridiculous.

    Of note: Not every neurotypical is good at utilizing their cognitive empathy effectively.

     

    No, I do not think I am psychic

    I do not think I can accurately look at a stranger (or anyone) and factually read their mind.  That would be CRAZY. What I do have (NT’s) is the ability to information-gather based off of someone’s facial expressions, body language, tone/pitch of voice, timing in delivering their words, taking in the same nonverbal language from those around this person, and the “hidden” meaning behind what someone says vice what they actually mean.  All of these things combined enable a person to come pretty close to accurately guessing what someone is thinking or feeling.  We learn to do this before grade school and it comes SO NATURALLY and rapidly we don’t even realize we’re doing it.

    As I have said before… the closer we are to a person (knowing their past behaviors, feelings, desires, or how they responded emotionally to a similar situation) the more likely we will guess what they are thinking/feeling correctly.  If it helps to call it “guessing” in lieu of “mind reading” then that is totally understandable and more accurate.  We are only guessing and no one can read another person’s mind; it just so happens NT to NT guessing is often spot-on.

    Since Aspies very rarely have “hidden meanings” in their words, and they cannot information-gather the same way we NT’s do… we (NTs) keep fudging everything up. We keep thinking there is hidden meaning in words, over-analyzing behaviors, and seeing the delay (or incorrect) response to our feelings as inappropriate, rude, aloof, condescending, mean, uncaring, insensitive, or cold.

    Eventually I hope I will help other neurotypical women to STOP DOING THIS!  Maybe when the NT women finally make sense of their husband’s behavior they can help create an army of advocates who want the world to also understand their incredible husbands.  

    Wishful thinking perhaps, but I believe it can be done.

    Understanding cognitive vs. affective empathy and how they work to enhance one another has to be very confusing and suspicious to someone who does not utilize cognitive empathy. I also realize the suggestion that an Aspie has zero cognitive empathy makes people with Aspergers feel angry that they are being deemed defective or broken.

    I think those highly empathetic neurotypicals (the wives of Aspie men usually are) and those with Asperger’s syndrome are both defective (SEE: WHY AM I SO STUPID?). With that being said, I do not for one second think that either of them are “broken”; just different.

    color

    If you don’t see the green number, you must not love me!

    My good friend is color blind.  He does not see the same thing when he looks at colors that I do. He is not broken for this, he just sees the world different than many of those around him.  My friend cannot control this, nor can he ever see the colors others do… he just has to accept that they exist for others.  My friend has a genetic mutation (I hate that word because it sounds bad) that causes the wiring in his brain to process color different.

    Someone with Asperger’s syndrome who cannot process cognitive empathy is not broken, they process information differently. Because it is the minority who has to navigate without that processing ability, Aspies end up being shunned and made to feel broken.

    My friend got made fun of for a long time for screwing things up that required the color vision capabilities of those around him. It might have been something simple like picking up the wrong color legos or puzzle pieces as a child, to painting his home in unappealing colors as an adult.  Sometimes people made fun of him and he felt like he screwed things up (but he never knew why).  When my friend finally learned he was color blind to some of the shades others could see, he stopped thinking he was a screw-up. When he was able to articulate this to people, they stopped giving him a hard time when he showed up in a green shirt instead of a blue one (military) or other areas where color-selection comes into play.  The people who were close to him began to help him instead or teasing him, like his wife laying out the correct color undershirt for him to wear to work the night before, or helping him navigate through other color-conundrums. 

    Lucky for my friend, something like color-processing is not often associated with personal feelings so when he had messed up in the past, his character was not attacked for being “uncaring and cold.”

    Lacking cognitive empathy adversely effects how easily a person can show affective empathy and therefore… people take this difference in neurologically processing information as personal.  Aspies get screwed by a society who thinks they just lack empathy altogether.

    They do not lack it, they simply cannot show it the same way we neurotypicals anticipate unless we directly state what we are thinking or feeling.  But alas, we don’t accept this different perspective because we don’t understand it… neither Aspie nor NT does.

    If only I could think that way…

    The honesty and simplicity in how those with Asperger’s syndrome communicate is something to appreciate and emulate. It is what we NT’s should be striving for in many ways.

    It would be so much easier if we could stop basing our own thoughts, feelings, and behaviors off of our assumed reality.  How many problems would be solved if neurotypicals just stopped reacting to what someone was “thinking” and chose to directly ASK THEM instead (and also believe their response as the truth)?  NTs are NOT always correct in their guess-work (obviously) and they are awful at it when they are guessing about their Aspie husband.

    It can screw us NTs up from time to time and cause us to believe a reality that does not exist… like when we assume we read nonverbal messages correctly but are way off target and then react to those messages by being upset, angry, offended, etc.. Sometimes our cognitive empathy steers us in the wrong direction but if we utilized the direct language Aspies use, we could avoid the whole misunderstanding.  This is what occurs the majority of the time in Aspie-NT marriages because we cannot read a person with Aspergers the way we can read an NT.  The reason for this is that Aspies lack cognitive empathy and therefore they do not operate under its existence in their lives. They are equally unaware of how their nonverbal messages come across to the outside world as they are about the nonverbal messages coming from it.  Without the knowledge of how they send out nonverbal messages, they never learn (from social interaction in childhood development) how to regulate their facial expressions, body language, etc. This regulation begins to occur without thought for NT’s so 9/10 times, the nonverbal messages they are sending out directly match the inner thoughts and feelings they are having.  With an Aspie, there is a disconnect with that and the nonverbal messages they are sending out do not often accurately match the internal thoughts and feelings they are having.  Neurotypicals don’t know this though, so they are receiving incorrect messages frequently from the Aspie in their life and they are responding to them as truth.

    Let me try to clarify.  Let’s say there is a neurotypical 5 year old child grocery shopping with their mother and their mom accidentally pushes the cart into their little leg. The child may feel a slight pain and make an automatic facial expression that reflects this pain.  The mom apologizes profusely to the child, who is in no way upset with their mom for the accident, and continues to make the same facial expression of pain because now their leg is hurting a little when they walk.  About ten minutes later, the mom notices that the child still has this look on their face but since time has elapsed and mom thinks it could no longer be a look of pain, she begins to associate the look with being angry at the mom for hurting them.  Mom again begins to apologize profusely and the child says, “I know you didn’t mean it, it’s ok mom.”  

    If this look keeps up (because the leg is still sore) the mom may eventually say, “I said I was sorry, why are you so mad at me?”  The child, having never said they were mad (quite the opposite) will then become aware that they are giving a facial expression that makes mom think they are in fact, angry.  This triggers those synapses to connect the dots between the face they are making and it’s confusing message and they automatically adjust this facial expression in the future.  This happens without purposeful intention… it is just the way the brain naturally wires itself through experiences in childhood.  The next time someone does something by accident, this child will automatically avoid that facial expression of discomfort so they do not make the accidental offender feel guilty, unless of course… they want the person to feel bad, then the look will remain (something that also occurs without thought).

    Hard to believe this happens, but it does.  

    That is how a neurotypical brain adapts to its social environment… so that their nonverbal messages do not cause unwanted emotional responses in others.  This happens in thousands of situations growing up and become an unspoken language based off of sending/receiving messages nonverbally throughout their youth.  This is why a neurotypicals ability to identify someone’s feelings (another neurotypicals) without the use of direct language become fairly accurate the closer they are to them.

    This is not the case with a person who has Asperger’s syndrome.  The Aspie child in the same situation will NOT understand that their facial expression is making their mother think they are angry.  They will know that they are in pain and their nonverbal messages will send out whatever response it wants to at that moment and there will exist no connection between the mother’s emotional response of guilt and their uncontrollable outward manifestation of whatever made her think this.  They will not even identify that their mother is feeling guilty when she says, “I said I was sorry, why are you still mad at me?”  They will take her words at face value; they may repeat the same sentence or say, “I know you didn’t mean it, I already said it was ok mom.”  They will not be aware that mom is giving them nonverbal messages in her question that show a face of guilt, or that her tone of voice is apologetic and she is really saying, “I am really sorry, I would never want to purposely hurt you.  I am concerned you think I did it on purpose because your facial expression is telling me that and that makes me feel badly that you would think that about me.  Please tell me you are not angry, and then please stop making a face that makes me think you are so I don’t feel guilty anymore.”  

    Holy crap that is a LOT of information mom thinks she is sending out to her child.  She doesn’t know she is speaking to her child without the use of those words because she naturally sends out a long paragraph of thought while only using words that unclearly summarize all those feelings.  The child is only hearing what mom said and therefore they may mentally process that mom must really think they are mad, but maybe she just didn’t hear them when they said they knew it was an accident and it was ok.  So they repeat themselves and they unknowingly keep the same facial expression of discomfort when they begin walking again, causing mom to think the child is purposely trying to cause her to feel badly for what she did.  By the time they reach the check-out line, mom may scoff at the child and say, “It’s ridiculous you are so angry about this, it was just an accident and you have no reason to be angry, stop being a baby!”

    Well, damn… that poor Aspie kid didn’t do a anything wrong and never “caused” his mom’s inevitably hurtful accusation.  Now the Aspie child is feeling angry… and they are absolutely justified in this!  Now the Aspie child WILL display a facial expression of anger or try to defend themselves, or get frustrated, feel hurt, and ultimately think they were treated unfairly (which is true).  What happens to Aspie children like this?  That’s when you see the good ol term, “temper tantrum” in full effect.  What happens to an adult like this? Well, that’s when you see a defensive and hostile response that makes the other person think the Aspie is an asshole.  It all makes perfect sense when you look at the big picture, but since no one grasps the cognitive empathy deficit, no one ever finds resolution in what actually caused the situation to unravel.

    In a scenario that innocent, the Aspie ends up receiving a very confused message that their mom is accusing them of feeling something that they are not feeling and they do not have a clue why.  The mother is not conscious of her use of cognitive empathy and therefore… she has no clue what kind of message she is sending her child by using words that are not in synch with the information she intended to send. The mom feels guilty for accidentally hurting her child and then becomes frustrated the child is angry, she begins to assume the child thinks she pushed the cart into them on purpose and feels hurt and eventually, irritated that the child would think that.  

    That is the speed and degree of emotional shifting a neurotypical does unknowingly when they are deciphering the nonverbal messages they receive. There is no direct articulation of words to ask questions or seek clarification for how the mom is receiving her child’s nonverbal message, so there will be no understanding of one another’s seemingly baffling behavior.  When the “baffling behavior” begins to pile up over time, both parties become further separated in their perception of one another and ability to understand the way the other thinks.

    Make sense?  Explaining a concept as abstract as cognitive empathy is incredibly difficult because it is not something that can be taught and most people are completely unaware of its existence.  They either use it, or they don’t; few are aware of who is using it, and who is not.  Aspie’s assume no one has this ability to read nonverbal messages (because they don’t) and neurotypicals assume everyone does (because they do).

    In the innocent grocery store example, you may now see HOW MANY different “feelings” can be in play for the neurotypical; guilt, frustration, confusion, irritation, etc. while the Aspie doesn’t really have any “emotional feelings” going on, they are just experiencing physical discomfort.  The aspie will eventually begin to emotionally feel anger though because they are being accused of feeling something that they are not.  

    CAUSE AND EFFECT

    The inevitable feelings of anger that the Aspie has after constant and unrelenting accusations about their inner thoughts and feelings (throughout their lifetime) become the recipe for an argumentative, withdrawn, and/or defensive adult.  They learn to associate social interaction with being accused of untrue things and they respond to this the same way any human would… they begin to assign “trigger” words that can alert them to respond appropriately before they are attacked.  Cause and effect.  If they are used to being called uncaring, naive, gullible, insensitive, malicious, cold, robotic, inappropriate, angry, sad, rude, condescending, thoughtless, stupid, selfish, or any other hurtful term hurled at them by an NT who inaccurately deciphered their innocent nonverbal messages as such… they are going to defend their own character the moment they think one of those labels is about to be launched at them.  Some become hostile and demonstratively defensive adults who argue before the words can even be said, others become withdrawn entirely to protect themselves from ever allowing those words to manifest by another person. Most adult Aspies end up doing both. 

    This is what happens to a ridiculously heightened degree with interpersonal relationships between Aspies and NTs. They are both speaking two different languages and one way or another, the NTs rapid shifting and attempts to identify the Aspies thoughts and/or feelings will turn to some form of accusatory verbal language directed at the poor Aspie who “Didn’t even do or say anything!”  They do not see the world through the same eyes when it comes to social interaction and interpersonal communication.  

    The only way to bridge this gap is for the NT to become aware of their use of cognitive empathy when communicating with the Aspie and make damn sure they are using plain language to send information and gather information in the future.  They cannot base any information off of the nonverbal messages they “think” they are receiving from their Aspie mate.  Even if some of those messages do end up accurately identifying the Aspie’s thoughts or feelings, they have to pull the plug on thinking they will the next time.  The person with Asperger’s syndrome will never respond the same way every time to a similar emotion or feeling because they do not have the neurological connections in place to repeat these things or become aware of them.  

    The only way to prevent such disastrous misunderstandings from happening is if the NT learns to never associate their partner’s nonverbal messages with the words they are speaking out loud.  They absolutely have to stop trusting their history of being skilled in identifying what others think and feel based off of nonverbal language.  They have to disassociate the link between nonverbal and verbal information and BELIEVE their Aspie loved ones words over their often contradicting nonverbal behavior.

    Neurotypical wives who want to find effective communication within their marriage to a man with Asperger’s syndrome will literally have to learn a new method of communication.  The Aspie cannot, I repeat, they CANNOT adapt to the neurotypicals way of sending and receiving messages.  They do not have this ability and they should not be expected to develop it, nor should they be held accountable for not using it.  The change MUST come from the neurotypical if they really want to have the intimate connection they claim to desperately want from their Aspie partner.  

    This is the #1 most important thing that must be done to turn a failing Aspie-NT union into a successful and happy one.  It isn’t easy and it is going to take a lot of awareness on the neurotypicals behalf to do this… but it is worth every bit of effort.  

    JUST TO BEAT A DEAD HORSE

    The neurotypical will never be able to accurately understand how their Aspie partner really feels about something if they are creating the information based off inaccurate nonverbal messages.  The Aspie is never going to accurately understand how the NT partner thinks if the verbal messages they receive are only a tiny fraction of the whole, which was sent predominantly through nonverbal communication that they cannot receive.  

    The cognitive empathy deficit disables the Aspie from ever responding appropriately to their NT loved one; in essence… it paralyzes their ability to utilize and show affective (emotional) empathy.  They have it… they have emotional empathy just the same as the neurotypical… but how can they show it when they have zero understanding of when, why, or how to use it at the right time?  The neurotypical is never going to utilize their emotional empathy appropriately toward their mate if they are trying to respond to feelings and thoughts that aren’t real.

    Tell an Aspie you are sad and why… in plain language, and if they love you, you will see emotional empathy.  Assume they know you are sad and why, and you are going to get an inappropriate response.  

    Now tell me, who’s fault is that really?

    BUT… THERE IS A GOOD SIDE TOO

    Not all cognitive empathy abilities for an NT are troublesome.  While neurotypicals obviously screw things up a whole lot with their Aspie loved ones, it is that use of cognitive empathy that enables amazing relationships with NT-NT individuals.  Having the instinctive ability to identify the thoughts and feelings of others without spoken words helps us offer our support, emotional empathy, love, assistance, and general regard for people rapidly without them ever having to ask for it.  Often times, adults do not want to directly ask people to fill the void of emotional needs.  For instance, if someone has just gone through a divorce, but is trying to put on a positive and optimistic face… an NT will usually become acutely aware of the facade based off of the other (unintentional) nonverbal messages being sent out.  They can respond with the emotional support the heartbroken person would benefit from without them having to ask.  The divorced individual does not have to feel weak, codependent, burdensome, or needy (which may further assault their fragile ego) because they did not have to reach out for help… help just arrived.

    It is pretty amazing to be able to respond to people’s emotional needs without delay and with the appropriate response; this develops trust and feelings of love.  This develops intimacy in romantic relationships.  This is what the neurotypical is expecting from their Aspie partner, who honestly… wants to provide all of the same rapid support to the NT they love.  The sad truth is that they can’t.  They can’t until the NT learns to use direct, unambiguous verbalization of what they need out loud.  They cannot expect it the way they would in an NT-NT dynamic.  That is not fair and it is counterproductive to obtaining the emotional empathy they claim to be deprived of.  

    NT’s keep thinking that if their Aspie partner cannot “identify” what it is they need, then they must be devoid of understanding human emotion… they must not have it themselves.  This is untrue and this is a thought-process that you are creating based off incorrect assumptions.  My husband used to say, “Your mind is your own worst enemy!” I despised him when he said this to me, as though he was calling me crazy, or telling me I was imagining all of the hurt feelings I had for feeling unloved by him.  The truth is… my mind WAS my own worst enemy.  I imagined things that weren’t true based off of my own understanding of neurologically processing emotions and correct behavior.  I knew I loved, I knew I felt empathy, and I knew I gave all of my effort in trying to provide those feelings to my husband.  I assumed he could do the exact same and when he did not, my mind created the reason for it.  He can do the exact same… love, feel empathy, and provide both of those things to me.  He just needs to get the right information from me in order to show me those things.  I allowed my lack of awareness to turn my husband into someone he was not and blame him for causing me harm that honestly… my own mind unknowingly created. Hard pill to swallow, but the survival of our marriage was dependent on it.

    IT’S ALL ABOUT AWARENESS   

    Just as a neurotypical has no idea how their communication abilities cause harm to their Aspie partner, the Aspie partner is equally blind to the damage they cause.

    Trying to put myself in my husband’s shoes and imagine a world where cognitive empathy does not exist was damn-near impossible at first (why no one wants to listen to the simplicity and innocence of it all). It is just as hard for us to grasp a world without this ability as it must be for an Aspie to grasp a world with it.

    Example: If you were holding up a red coffee mug and tried to convince me it was green, there is no way I would buy into your words… nor would I believe you were really seeing green. I would wonder why you were being snarky or screwing with my head and then over-analyze why you would want to do this.  You would also find yourself completely dumbfounded as to why I kept calling the mug red when it was clearly green; you might even think I was crazy and doubt my opinions in the future.  Neither of us would be wrong; it would just take a giant leap of faith for one to believe the other is TRULY seeing that color and not just messing with them.

    To bridge the gap of the Aspie/NT processing of cognitive empathy, both people have to take a giant leap of faith and trust that they see the world different. It is only in that leap of faith and trust in the other person’s reality that they can both utilize their amazing affective empathy skills to make a relationship work. 

    Let me try it this way…

    150226_SLATEST_TheDress-proof590.jpg.CROP.cq5dam_web_1280_1280_jpeg

    This dress is a big topic of discussion on the internet that makes people stop and think about the way they perceive the world in contrast to others.  When I look at this dress, I see white and gold.  In NO way am I capable of seeing blue and black (believe me, I tried).  Some people will look at it and say it is blue and black (it actually IS) and wonder how in the hell I am seeing white and gold.  My daughter (who I like to think is a mini-me) only sees blue and black and thought I was nuts for seeing white and gold. Since I wanted to believe my daughter and I looked at the world through similar eyes, I felt incredibly sad when I realized (based off of this image) that even she and I see the world different; even more disturbing was the concept that my own mind can perceive something ENTIRELY incorrect based off of the way the synapses that control color-processing function within my own brain.  Neither of us are “wrong” for what we see, as the dress is still pretty and exists, we just don’t see the same thing.  Yes, technically I am “wrong” but my perception is neither harmful nor purposefully argumentative in calling the dress color as I see it.

    Considering the dress IS actually blue and black, it appears my brain is the one that deviates from the norm in color-processing under certain lighting.  This is what it is like for an Aspie vs. an NT.  The NT is processing the information for cognitive empathy like the majority that have that brain function while the Aspie (who lacks cognitive empathy) gets a different take on the same human behaviors.  

    Now that I KNOW my eyes deceive me with the image above, I would be more inclined to trust my daughter’s perception if we had a debate on what color something was in the future.  No matter how hard I try, I am NOT going to see this dress as blue and black.  It cannot be done.  My brain is not capable of doing it.  If I had not been proven wrong by seeing an image of the dress on a storefront rack and having the owner of it validate that it is blue and black… I would have gone to my grave telling my child it is white and gold and she is WRONG.  As humans we are flawed, we want to convince others of our reality in lieu of accepting and appreciating the opposing viewpoint they have… we don’t want to be wrong and we don’t want to take these giant leaps of faith in what reality actually means.  

    It is incredibly hard to trust someone else’s take on the world when you cannot see what they do.  It is incredibly difficult for an Aspie to trust in this ability we have: to rapidly put a myriad of nonverbal communication behaviors together to identify someone else’s thoughts and feelings (cognitive empathy).  It is incredibly challenging for an NT to believe their Aspie loved one is truly incapable of doing the same and realize that their inability to see the same thing is not bad or wrong.  Nothing changes the fact that both NTs and Aspies comprehend human emotion equally and want to compassionately respond to it with the same level of concern and attention.  We both want the same thing and understand the complexity of human emotion… we just identify it in a very different way.

    Neurotypicals reluctance to accept this, or their ignorance about the Aspie’s perception is causing them to place unfair and impossible expectations on their Aspie partner.  We expect them to identify our feelings when we are using nonverbal means to communicate them.  They cannot behave empathetically toward us (affective empathy) if they cannot identify what we are thinking or feeling by using cognitive empathy.  They have the same desire to be empathetic toward our feelings as we do theirs, we are on the same page with this… we just drop the line of communication when we believe our perception of reality is the only one that exists.  

    Both people have to stop and accept the other person’s capabilities and limitations so they can appreciate the contrasting world they frequently exist in.  Both parties have to begin trusting the other’s take on the world, even if they cannot see it themselves, just as I now have to trust my daughter may be right more times than not when we perceive colors differently.  I have no choice but to trust in her insight now that I finally understand my brain may not always perceive reality accurately.  It sucks to have to admit I am not always right in my processing of information, I am human and I have an ego.  

    If the Aspie husband was willing to trust his wife and what she can see, he could have an incredible teacher and advocate in navigating social norms for the remainder of his days.  If the Aspie husband was willing to accept that something exists by which he cannot process and trusted his wife’s view… there is a damn good chance she would begin comprehending his take on life with greater ease and learn to use verbal language to directly communicate what she is thinking or feeling.  There is a high likelihood she will finally stop using her information-gathering cognitive empathy to guess her husband’s thoughts and begin to just ASK HIM instead.  If the Aspie husband could accept that his wife has an equally challenging time learning to communicate without her instinctive use of reading and delivering nonverbal messages, he would be more patient with her frustration when she vocalizes anger or sadness that he did not recognize or respond appropriately to her emotions.  

    Both Aspie and NT have to stop their current defiance.  They need to openly admit to one another that the other person is NOT WRONG.  It is time to drop the damaging assumption that their version of reality is the correct one.  It is time to humbly admit defeat in the history of ego-driven and forceful attempts to make the other person exist in their version of reality.  There can be no “agreeing to disagree” there must be a mutual understanding that it is time to “”agree to agree” with one another’s truth.  There is a whole lot of fascinating experiences out there if an Aspie-NT can stop being so stubborn and appreciate one another’s differences and utilize them to benefit their own awareness in such a mind boggling world.  

    It all begins with truly comprehending and accepting the difference in cognitive vs. affective empathy.

     

    Oh no, what was I saying?

    I forgot I was writing a reply to David when I originally began this post.  

    My apologies.  I do that.

    Ok, so getting back to the point; yes, it is unfortunate and unfair to say that someone with Asperger’s syndrome has zero empathy.  Like you, most people only associate empathy with the affective side (something that is not defective in either party).  

    If people could comprehend early on that cognitive empathy does not exist for everyone (more people than anyone could fathom) then they would be able to change the way children are raised and how misunderstandings in social interactions occur early on (setting Aspies up for a life of being unfairly judged and labeled).

    Just because someone is deemed a neurotypical does not mean they always utilize their cognitive empathy effectively.  There are TONS of people out there who have the ability to process cognitive empathy but are limited in its use due to the way they were raised or experiences in their past. Understanding this difference in early childhood would benefit more people than anyone realizes and help to prevent much of the childhood alienation and bullying we have seen in the past.  The only difference between a neurotypical and a person with Asperger’s syndrome is that a neurotypical CAN develop and strengthen their use of cognitive empathy.  An Aspie does not have the neurological tools to ever develop theirs (they are never going to change the colors identified in that damn dress).  Aspies will always need the neurotypicals in their life to minimize their nonverbal communication or at least assign words with it.  

    I believe the married Aspies out there CAN begin to connect the dots of their spouses feelings and emotions (without the use of words) eventually, provided the NT wife continues to verbally articulate them while she is also using her nonverbal communication.  I do believe the repetition of words with facial expressions or actions, or explanations of thoughts that were initially expressed with indirect words, can be linked up after a while to help that couple meet closer to the middle as time progresses.  The jury is still out on this though as my marriage is not that old and it currently seems that repetition would need to occur for many years (using both verbal and nonverbal at the same time) before my nonverbal messages could become readily identified by my husband. 

    I hope I did not confuse you further. If you have not read my novel-sized post about empathy, please do (See: WHAT ABOUT ASPERGER’S SYNDROME AND EMPATHY).  I give a lot more examples of what the cognitive vs. affective behaviors look like in action to show how they feed off one another negatively in Aspie-NT interpersonal relationships. 

    Thank you for taking the time to read and consider my thoughts. I hope that others will express their confusion as you have and give us more insight or opportunities to clear up misunderstandings.  

     


  • HOW ARE ASPERGER’S SYNDROME AND AUTISTIC DISORDER DIFFERENT?

    The real question should be:

    “HOW ARE THEY THE SAME?”

     

    I was drafting a response to a comment by an amazing woman named Hilary who had taken the time to offer her insight and share personal accounts in reply to some of the things I have written when it occurred to me that she was addressing common sentiments I have read time and time again.  Ultimately, I decided that perhaps it would be better served to create a post addressing these comments in lieu of simply replying to her.

    How and why do I think Aspergers and Autism should be separated at this time with our current comprehension of all-things-ASD?  I am going to launch into some seriously obnoxious rants about neuroscience from my current level of comprehension to help answer why I am such a staunch advocate for this.

     

    I apologize to anyone who is an actual neuroscientist for I will most certainly dumb-down and trivialize what you understand and possibly motivate you to provide more articulate education on the subject matter.  You are welcome to do this (and I think you are badass and envy your level of intelligence and chosen profession) but there is a good chance the readers will be equipped with the same capacity to grasp something so complex that I am and your words will fly far over our heads!

    First, (and most important) I need to give credit to Hilary who inspired this post by sharing what she wrote in reply to my (thus far) controversial opinions and unfiltered slaughtering of the DSM-5 diagnosis of Autism Spectrum Disorder:

    “Having Asperger’s comes with sensory issues that are not going to respond to medication or therapy with a mental health professional. These sensory processing issues cause a lot of problems with perception and get in the way of functioning. Also the muscle memory often doesn’t work well with Asperger’s so things like hand writing just do not improve with time or practice the way it would for an NT. How is a mental health professional going to address things like this? We have had to make so many accommodations to daily life in our home to function well, because of that I am thankful that Asperger’s is lumped with Autism. I was in counseling for a long time, it did no good. Also, antidepressants had a terrible outcome. There are environmental changes which once they’re made, make it much easier to function normally, then the symptoms are decreased and the person can progress. Counseling could help provide coping techniques, but the sensory issues that are at the heart of Asperger’s need to be addressed. There are also so many physical medical conditions that contribute to or result from Asperger’s- both of my children wear glasses, have hearing issues, gastrointestinal issues, sleep problems, etc. that when we treat one of those, they are more able to function emotionally and socially. Psychiatry can’t touch those and they have a major impact on where they’re at on the spectrum.

     I hear how upset you are and I’m sorry that this is so frustrating. I feel angry a lot too. I see your points, and they are valid. It’s quite possible that I don’t understand you fully, I don’t understand the technical aspects of this. All I know is that with getting help for my children, their medical and sensory issues have to be cleared up if we want to make lasting changes to the social/emotional parts. Just the sleep disturbances/breathing problems alone cause so many meltdowns during the day. Both are high functioning and you wouldn’t realize that they have so many medical issues, but they do. The blanket term Autism, helps us to look at these problems as part of the whole. Mental illness also goes hand in hand much of the time just because of how stressful growing up with Autism/Asperger’s is and how people treat you when you have it. It can start to overshadow the true problems, which if cleared up would help a lot. 

     One final thought- the DSM is based off of and changes with social norms. Being gay used to be in the DSM along with many other things that we no longer consider to be mental illness. I share your anger in the money that is being made off of the people who are suffering. A lot of money is made off of people believing that something is wrong with them. More understanding, love and patience would be a good thing all around. Our society makes me sad and I don’t put a lot of stock in these labels. People intrinsically know when they aren’t loved for who they are and it causes all sorts of odd behavior. Much can be avoided if we understand that we cannot change another person and instead meet them where they’re at and love them unconditionally.”

     

     First, I absolutely appreciate her words and agree with the comment that we should accept one another as we are and love them unconditionally.  I will disagree with the fact that I believe we should try to change some things about people.  We can change, all of us, in various ways to become our very best selves in life and in relationships (not that she was suggesting against this).  I want to change my husband’s negative behaviors and I am hell-bent on doing so, even if that means I am an unaccepting jerk to others.

    Ok, so I am a self-proclaimed ADHD sufferer in need of some serious medication, so you may imagine what rabbit holes my brain took me down after reading her comment.  After a lot of effort to ground myself (sort of) I was able to organize some degree of structure to address her words:

    I wonder if those who can share these feelings (their spouse or children) were ever receiving counseling for an Aspergers or Autistic diagnosis by a professional who specialized in one of those “disorders” (I HATE that word!) before the DSM change grouping it all under ASD?

    I would be interested to hear from those who could give examples of how the therapeutic benefit of the ASD focus provides better assistance then having the two treated separately. Unfortunately, I doubt if there are many who can provide this example because the challenge to even find someone who specialized in Aspergers was so difficult (easier in the U.K. and Australia then the U.S. though) before and now in the U.S. is near-impossible.

    Since I am a believer that Aspergers should be treated by itself, I find it hard to see a benefit to the professional who is in favor of merging the two together.  It was mentioned that neither counseling nor medications ever benefited the commenter personally.  While I am always sorry to hear that, I am sadly not surprised.  I think in regard to counseling, most are/were never given the opportunity to see a therapist that was truly knowledgeable about how to help them in the first place (if they do have or warrant an Asperger diagnosis).

    As for the medication to treat Aspergers; useless.  If it is not a hormonal or chemical imbalance causing the problems experienced but just a different processing ability within the brain that is hard-wired from before birth, those medications COULDN’T HELP.

    SCREW YOU PHARMACEUTICAL COMPANIES!!!

    Unless science figures out the neurological mapping and/or medications that can awaken parts of the brain that are not active, or connect specific identified pathways that are affected in Aspergers/Autism vs. NT cognitive processing, the medications out there being recommended are going to continue to be useless.  I strongly believe this but unfortunately, I cannot back my words with scientifically proven facts since few find it worthy of investigating further.  Medications are only beneficial after the unnecessary stress of needlessly trying to adapt to another way of thinking causes so much emotional turmoil to an Aspie adult that a medication may provide relief in numbing some of it.  Even then, I am suspicious of how an antidepressant that targets chemicals within the brain is going to help an Aspie who may have a differing baseline than the majority-NT’s they were originally studied to help.

    While I do believe the sensory issues sometimes common to both Aspergers and Autism can be effectively treated with similar behavior and environmental interventions, I do not think the social ones can be.  Often people forget that these exact same sensory issues Aspies have (not those with Autism) are also something that NT’s experience very frequently, so I have not been convinced they are as linked to Aspergers or each other as the professionals are suggesting.  I think it is more of the way the resulting stress of those sensory issues outwardly present themselves in those with Aspergers that keeps mistakenly highlighting them as symptoms of the disorder.  Regardless, they should not be managed the same way by a mental health standpoint since the cognitive processing is likely to be so different.

     

    Here I go on my tangent about the human brain from my basic understanding…

     

    HOW IS INFORMATION PROCESSED IN THE BRAIN?

    An individual’s brain contains approximately 100 billion nerve cells referred to as neurons.  There are upwards of 10,000 synapses that connect one neuron to another (give or take a few thousand) and one neuron can be connected to 5,000-200,000 other neurons.  Glia cells are the cells that support neurons and can clean up dead ones, or enhance the function of active ones.  Neurotransmitters are the chemical mediums by which signals flow from one neuron to another.

    HUH?

    Imagine that I am holding a landline telephone in my hand (neuron) and I am attempting to share a one word response to someone’s question who lives across the globe (who is also holding a landline telephone in their hand), but it takes 10,000 different wires (synapses) to get my message to the other side of the world.  These wires (synapses) can effectively send my message to the other person, and also enable upwards of 200,000 thousand other people holding a landline telephone in their hands to hear it the very moment I dial the number and an electrical current is transmitted through them (neurotransmitters).  Enabling these wires to function are thick cables surrounding them that protect my transmitted message and keep it whole, as well as countless humans working to clear them of debris and rid faulty or broken cables along the way that could affect the pathway (glia).  Now consider that if you cut even one of those wires, the word on the other end may be received garbled or it may be a different word with the same meaning to the one I spoke, or an entirely different and opposing word altogether… OR… it comes across in a different language!

    TRACKING??

    Hopefully now you have my elementary understanding of how messages are sent and received in the brain.  Let’s move on to the structure and function of the brain now.

      

    THE INCREDIBLE AND POORLY UNDERSTOOD HUMAN BRAIN

    Your brain is housed inside of a thick skull (laughing at myself) on top of your awesome body.  It is comprised of the cerebrum, cerebellum, and brainstem.  The cerebrum is the largest part with left and right hemispheres that control the opposing side (ie, if you jack up your left side the right side of your body will be adversely affected and vice versa).  The cerebrum is the ultimate controller of functions like vision, hearing, speech,  learning, sensations, reasoning, emotions, and fine motor movements.

    The cerebrum is where the differences exist in Asperger’s syndrome and Autism!

    The cerebellum (underneath the cerebrum) is our controller of posture and balance because it determines all coordinated muscle movements.  The brainstem is our life (without the other two we could still technically be alive) as it controls breathing, heart rate, thermoregulation, digestion, swallowing, sleep/wake cycles, etc.  You might now be seeing that the cerebellum and brainstem likely play a role in the the Autism-related “medical” issues, but they do not play a role in the Asperger ones (or lackthereof) at the same frequency despite the professionals who keep calling them symptoms of both disorders. The medical issues associated with Autism may have root causes in the cerebrum as well, but in Aspie and NT individuals, the likelihood of problems stemming from the cerebellum and brainstem are equal.

     

    It is a *KARA-FACT* that the the cerebrum is 100% accountable for all things Aspie/NT!

    As a nurse on an acute care multi-service unit that sees every imaginable patient from infant to elderly, I spend the majority of my time preoccupied with all-things related to the cerebellum and brainstem, often at the saddening exclusion of the cerebrum (despite having psychiatric patients and every patient warranting cerebrum-related attention).  Because of this and the daily frustration I have at medical professionals bypassing the cerebrum in general (within the context of acute care), I haven’t any interest in discussing those parts of the brain in any of my blog posts.

    I mentioned that the right controls the left and vice versa, but this is not entirely the case with all functions.  As a general rule, the left hemisphere controls writing, speaking, comprehension, and even the ability to do math. The right is where artistic/musical ability is controlled, empathy and behavioral characteristics, personality and creativity.

     

    CEREBRAL HEMISPHERES: GETTING DOWN TO THE NITTY GRITTY

    There are four divided lobes that make up the two cerebral hemispheres, the frontal, temporal, parietal, and occipital (and these have further divisions I won’t get into).  All of these lobes share varying complexities in how they work together and serve to promote or sometimes inhibit the others.

    The frontal lobe mainly serves to control judgement, problem solving, intelligence, concentration, speech, body movements, and writing.  It also controls behavior, emotions, and self-awareness.  The Parietal lobe controls language interpretation, spatial and visual perception, memory, vision, hearing, and sensory functions like touch, temperature, and pain.  The occipital lobe interprets vision in regard to movement, light, and color and the temporal lobe is the part responsible for understanding language, hearing, memory, sequencing and organization.

    There is a term called Brain Lateralization whereby neural functions (cognitive processes) are more dominant on one side of the brain or the other.  I am sure you have seen images of the brain in your lifetime that show two distinct chunks (the right and left hemisphere) that look like they could be split apart without much effort.  If you’re having trouble visualizing it, here it is:

     

    330px-Cerebral_lobes
    The human brain depicting the separated hemispheres (Gutenberg Encyclopedia)

    The two hemispheres are connected by a bundle of nerve fibers called the corpus callosum. If you took away this bundle, the brain would not be able to communicate between hemispheres, something that has been done in history to treat severe epilepsy.  In these procedures, corpus callostomies were performed and very large portions of this bundle were removed entirely (these patients were called “split brain” patients).  It was in the study of these split brain patients that science was able to definitively identify what hemispheres controlled what functions for the majority of the world, and further brain mapping research has made this unarguable science at this time.

    Theory of Mind and Empathy have long been believed to stem from the frontal lobes (predominantly in the right frontal lobe) and this has been proven with repeated results throughout historical studies (http://brain.oxfordjournals.org/content/124/2/279).  If you research the Mirror Neuron System you will come to find that there is a general agreement amongst the scientific community that Asperger’s syndrome shows a marked impairment within these areas of the brain (predominantly within the right frontal lobe).  Men already have asymmetry in their brains (with greater use of their left hemisphere) when compared to females, so an Aspie male is genetically challenged in the areas of right-brain thinking from the very start and further compromised by their syndrome.

    brain lobes
    http://www.md-health.com/Lobes-Of-The-Brain.html

    I already mentioned the neuroscientist Dr. Frank Duffy (See: WHAT DOES AUTISM SPECTRUM MEAN?) who was able to show that the brains of an individual with Aspergers and one with Autism were very different with the use of electroencephalogram comparisons.  What I did not mention is that the children with Aspergers were shown to have much more neural connectivity in the area of their left hemisphere than the right when compared to both an Autistic and NT child.  On MRI scanning there were very distinct differences in the brain of an Autistic individual and one with Asperger’s Syndrome as well.

    The best imaging study I found in regard to a comparison between both Autism and Aspergers was published in the Journal of Psychiatry and Neuroscience in 2011.  In this meta-analysis of MRI studies the distinct variations in affected parts of the brain are conclusively identified and they do NOT show that the two are the same.  While there are some lobes of the brain that show some minor overlap, they are few and far between when one looks at the differences.

    For instance:

    “Only for studies of Asperger syndrome did we note clusters of grey matter volume excess relative to controls to be primarily located in the left hemisphere, medial temporal lobe and inferior parietal lobule, with only 1 cluster of grey matter excess identified in the right hemisphere in the inferior parietal lobule.”     http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3201995/

    Again, we are seeing/hearing that the “problem” associated with Asperger’s syndrome lies within the right hemisphere of the brain, whereas the Autistic brain shows differing parts of the right and left hemisphere with only a few similarities.  What was the ultimate conclusion of this incredibly valid and peer-reviewed study?

    “An ALE meta-analysis of grey matter differences in studies of Asperger syndrome or autism supports the argument against the disorder being considered solely a milder form of autism in neuroanatomic terms. Whereas grey matter differences in people with Asperger syndrome are indeed more sparse than those reported in studies of people with autism, the distribution and direction of differences in each category is distinctive. Asperger syndrome involves clusters of lower grey matter volume in the right hemisphere and clusters of greater grey matter volume in the left hemisphere. Autism leads to more extensive bilateral excess of grey matter. Both conditions share clusters of grey matter excess in the left ventral temporal lobe components of the extrastriate visual system. This summary of a rich VBM MRI data set has important implications for how we categorize people on the autism spectrum and cautions that mixing individuals with autism and Asperger syndrome may at times obscure important characteristics manifested in one or the other condition alone.”  

     (J Psychiatry Neurosci. 2011 Nov; 36(6): 412–421)

    If the right hemisphere has a higher level of control over cognitive empathy, (and other areas shown to not be functioning “normally” in Asperger’s syndrome)… could it be that the very neural pathways required to process cognitive empathy are simply not there at all?  I highly believe this to be the case, but that is as far as the scientific data can take it at this time so my theory (See:  WHAT ABOUT EMPATHY?) will have to wait to be proven true.

    Aspergers-brain MRI

    I digress… Ok, so neuroscience appears to repeat the sentiments that the two are not the same.  Yet here we are with them grouped together and no further funding put toward the isolation and study of Aspergers in and of itself.

    According to Autism Society Org., the five major warning signs of Autism are:

    1. Does not babble or coo by 12 months
    2. Does not gesture (point, wave, grasp) by 12 months
    3. Does not say single words by 16 months
    4. Does not say two-word phrases on his or her own by 24 months
    5. Has any loss of any language or social skill at any age

    These are the medical conditions very frequently associated with Autism:

    • Gastrointestinal problems (Chronic constipation and diarrhea)
    • Low muscle tone
    • Seizures
    • Pain threshold abnormalities (Very high insensitivities or sensitivities to pain)
    • Pica (Eating of non-food objects)
    • Immune System Problems (Allergies, rashes, ear infections, chronic autoimmune problems)
    • Low IQ
    • Severe Sensitivities (Chronic reactions to taste, sound, light, textures, etc.)
    • Sleep Disturbances
    • Vision problems
    • Hearing problems

    Well, we already know the major warning signs of Autism listed above do not apply to Asperger’s syndrome since impaired language is what everyone claims sets them apart.  All of the listed medical conditions are not surprising when you look at the brain areas affected in a child or adult with Autism.  These are not common to an Asperger child or adult any more than they are to someone considered Neurotypical.  Yes, there are exceptions and some Aspies say they have similar medical problems, and there is no doubt they do.  With them though, these could be related to medications commonly prescribed to an Asperger child/adult (ADHD medications alone can cause gastrointestinal and sleep disturbances) as can the antidepressants they often receive which would certainly make their medical symptom prevalence appear similar.  They can also have zero connection at all to do with the neurological deficit causing aspergers and everything to do with genetic mutations and environmental exposure… just like every other medical condition out there for neurotypicals and aspies alike.

    Aspie men and women have normal to above normal IQ’s.  When you find an Aspie with a low IQ, it would make sense to consider High Functioning Autism over Aspergers (in my opinion).  The problem with Aspergers and why it was lumped into Autism despite all diagnostics showing a distinct difference in the parts of the brain affected, once again, is because the professionals had inconsistencies in diagnosing it.  It is not, and never has been because the two are the same.  It truly is because those entrusted to identify them as separate could not get on board with the data and research and accomplish this!  Due to the overlap in some of the symptoms in High Functioning Autism and Aspergers, everyone just threw their hands up and chose to deem them synonymous.

    At this point in time, the only shared deficits or behaviors between Asperger’s syndrome and High Functioning Autism are the focus on special interests and impaired social communication (and even those can be differentiated when analyzed closer).  Despite this fact, there is a constant claim that it is near-impossible to differentiate between the two.  Of course there is an incredible difficulty doing this right now, they opted to stop moving forward in research to break them apart, and the confusion that exists now (which was already bad) is getting worse with the DSM-5 putting them in the same diagnostic category.

    While no one can appear to agree on the cause of either disorder, it is generally accepted that Autism has a link to both genetic and nongenetic (environmental) roots.  Even Nationally recognized groups that serve to educate the public about Autism agree with this.

    “A number of nongenetic, or environmental, influence further increase a child’s risk. The clearest evidence of these environmental risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy, extreme prematurity and very low birth weight and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. Mothers exposed to high levels of pesticides and air pollution may also be at higher risk of having a child with ASD. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.”

    https://www.autismspeaks.org/what-autism/faq

    There are no indications whatsoever that Asperger’s syndrome has anything but genetic foundations that develop when the individual’s brain is initially forming in utero.  There are no links between those appropriately diagnosed with Aspergers and any of the common environmental associations observed in Autism.

    I find it telling that the very people who have spent over 50 years working directly with and for Autistic individuals and raising awareness of Autism appear to want the two separated.  Perhaps many people miss the statements within these national and global organizations that suggest this.

    “We applaud the National Institute of Mental Health and its director Dr. Tom Insel, who has chosen not to place so much weight on the DSM-5 diagnosis categories. NIMH will not use DSM categories as the “gold standard” and will begin moving away from an exclusive focus on symptom-based categories.”

    http://www.autism-society.org/what-is/diagnosis/diagnostic-classifications/

     

     CAN THE BRAIN BE FIXED?

    When a child or adult learns how to do anything, their brain is literally creating neural pathways (messages sent along synapses) to make a permanent connection to later retrieve this information.  You are creating neural pathways as you read this silly blog post.  The more a subject is repeated, the more synapses connect, creating something that can conceivably become automatic over time.  This is exactly how cognitive-behavioral therapy works.  Individuals are taught to look at something new, or in a new light, and then repetitious reinforcement, coupled with positive associations, develop behavioral modifications that can and often do become permanent (although not unalterable).

    Neural pathways determine neurochemicals, or the strength of the information passed through synapses.  Medications temporarily change the chemistry of the “strength” of the messages sent to and from neurons, but they cannot, I repeat CANNOT change the pathways themselves.  What does this mean?  It means if a pathway does not exist in the first place, or the neurons are not present on one end or the other (or both) to even transmit or receive these messages… there is no amount of medication that can create them.  There is no way to medically help a person with Aspergers to develop cognitive empathy if the neurons and synapses associated with them are absent to begin with!

    This is why chemical intervention and treatments are a cruel promise that will never deliver to the parents of children with Aspergers or the Aspies themselves.

    There is this thing called neuroplasticity where the neural pathways in the brain are believed (and fairly well-proven) to remain changeable throughout a person’s lifetime.  Cortical remapping has been proven in response to injury whereby the damaged part of the brain develops new pathways to re-establish functions thought lost with damage sustained to the brain.  These brain changes can be in the neuron (messages) themselves (non-synaptic plasticity) or the synapses/pathways that transmit data to and from the neurons (synaptic plasticity).

    This is important to me because there appears to be a very high likelihood that the deficits observed in Aspies have caused a more pronounced use of some other parts of their brain!  

    In other words, the same amount of neurons seem to exist to that of an NT brain, but the neurons disconnected from sending messages to the areas that handle emotional reciprocity, Theory of Mind (ToM), and empathy have instead lead to more connectivity in other areas of the brain.  I also believe strongly that those with Asperger’s have affective empathy, but without the cognitive empathy to build that over time, the synapses are existent but the neurotransmitters have opted to be utilized elsewhere (giving the appearance of ZERO empathy).  Perhaps these more active neurons (in places that do not control empathy) accounts for the increased sensitivity to light, sound, textures, etc.? Perhaps this accounts for the higher level of intelligence in logical processing or extreme focus on objects?  This could be said for Autistic deficits as well, only their affected neural pathways are far vaster than that of an Aspie and likely account for the wide variation of deficits observed in more severe forms of the disability.

    New trials are underway with some proven success in neuro-therapy to utilize brain stimulation techniques that aid in the recovery and treatment of stroke and schizophrenic patients.  While I am struggling to find research on any trials of implementing this on Asperger or Autism affected individuals, it is something that certainly warrants attention.  Exciting as this sounds, it seems that there would be a higher rate of success in working with autistic individuals who appear to have more deficits in parts of the brain that could target hemispheric transference.  Since the male Asperger brain seems to be entirely lacking of synaptic connections within many right brain-dominant areas controlling empathy, there may not be a way to create synapses that simply do not exist.

    If it is true that female Aspies have more synapses connecting their neurons within the parts of the brain that function to create affective empathy maybe neural stimulation could enable them to develop even greater empathetic intelligence over time.

    If there is to be any real hope in regard to the treatment of Asperger men, it would be through the utilization of either cognitive behavioral therapy or neural stimulation.  I highly doubt there exists an opportunity to ever create true cognitive empathy in an Aspie because I do not believe those neurons exist in those specific areas of the brain (PLEASE, SOMEONE DISCOUNT THIS!!!).  I do still believe there are a billion other neurons in the Aspie brain whose synapses can be modified to enhance all of the other forms of communication that DO readily exist.  I believe that honing in on these available neural synapses can better serve the Aspie within the context of interpersonal relationships.

    GOING BACK TO THE ORIGINAL INSPIRATION BEHIND THIS POST

    In regard to the question that Hilary posed about how psychiatry is going to help with the other deficits associated with ASD; I can only say that it would first require teasing out whether or not the child or person has Autism or Aspergers in the first place.

    There is no way to specifically address the needs of any child or adult if there is no real understanding of what neurological deficits exist and require attention.  Many of the other medical issues she mentioned in her children appear to indicate that they may have Autism, albeit, the “higher functioning” form of it.  For them (if this is the case, and I am not claiming it is) the right therapists could work with “how” the medical problems affect or contribute to behavior/social ones.  It would be nice to see neuroscience find the causative link between the mind and body, but we are a long way away from that.  The answer for now would be for all disciplines of medicine to utilize interdisciplinary approaches and to work together to promote the best outcome for a person’s overall health.

    So long as there exists blurred and confused understandings of the two “disorders” (making them indistinguishable on a therapeutic level) no parent is ever going to know if they are getting their child the right help that they deserve.

    Until neuroscience can definitively prove the causation of either/both disorders, NO ONE should be boldly recommending that they be diagnosed or treated the same way!

    “HIGH FUNCTIONING” IS A TERM DEVASTATING TO ASPERGER’S SYNDROME

    It is important for me to challenge the overuse of the term “high functioning” as it relates to both Autism and Aspergers.  I do believe that there exists High Functioning Autistic individuals who do not have the same debilitating deficits seen in some children with Autism, although I also believe calling anyone with such a challenging road “high functioning” to be inappropriate as it causes incredibly unjust perceptions by the outside world.

    The term “high-functioning” is the most UNFAIR label to ever attach to anyone who has Asperger’s syndrome (and maybe parents of Autistic children will agree with this as well) because it gives the false idea that some are just less affected by their disorder than another (not true in Aspergers) and that they function “just fine” in the predominantly NT world.

    NO ONE with Asperger’s syndrome is high-functioning in this NT world, in fact, the more “high-functioning” they appear, the greater likelihood they have adapted who they are to fit in and denied or suppressed the ability to actually be themselves.  The most high functioning Aspies out there are likely suffering internally far more than those that isolate themselves and appear to be “lower-functioning” by society’s viewpoint.

    I am not meaning to personally attack anyone’s use of that word, particularly parents, as it is appropriate for what many have been told to utilize in describing a child or adult who does not have the severely debilitating deficits (like extremely low IQ or impaired/absent speech) that can be seen in what was once called Classic Autism.

    It is, however, the very use of the words “high-functioning” as it relates to an individual who should be diagnosed only as having Asperger’s syndrome that we now have a society who is becoming increasingly numb to the term autism in general.  Just click on a news story about ASD (you can find a new one each and every day on one of the major media outlets online) and you will see people constantly posting about how individuals who are just “awkward” are using the term autism as an excuse of sorts.  We are also seeing more parents who have Autistic children becoming resentful toward the Aspie children and adults deemed “high functioning” and expressing their upset over the use of the word autism when they feel their children (who are severely disabled) are now being overlooked.

    CONCLUSIONS

    My conclusions are as follows:  Asperger’s syndrome and Autism (regardless of the functional ability) are NOT the same thing.  Neurology has proven that they are not the same thing and since they clearly have not been heard, there is an incredible need to continue funding the research of both (separately).  Medicine, psychiatry, and other interdisciplinary approaches are essential in providing for the needs of individuals diagnosed with either Aspergers or Autism.

    We need to stop going backwards in science where these two “disorders” are concerned and begin moving forward and finding the biological implications within the brains of those affected.

    There may exist future therapies that can vastly improve the neural synapses that serve to define both Aspergers and Autism.

    For now, cognitive behavioral therapy is the most effective means of creating improved interpersonal relationships and needs to be explored further.

    I am so thankful for all of the responses and comments I have gotten about this blog, especially with how new it is.  I genuinely respect and appreciate everyone’s thoughts and willingness to share personal glimpses into their own experiences.

    I hope this post has cleared up why I believe that Aspergers and Autism are two distinctly different disorders and why I am an advocate for the separation and research into both of them in the future

     

    THOUGHTS?

     


  • ASPERGER/NT MARRIAGE ADVICE: WHERE DO I GO FOR HOPE?

    Step #1:  Begin with this…

    Let’s first identify the “help” you have already stumbled upon

    I have mentioned that I have “Found the end of the internet” in search of anything that could help my marriage. This is a very heavy claim to put out to the world, but it is exactly how I have felt after years of searching and coming up empty in regard to useful advice on how to better my relationship with my Aspie husband. There are plenty of places to go to when a person types in, “Asperger Marriage.” You will find tons of websites dedicated to one side or the other, and within those pages you will read hundreds of comments about a relationship in turmoil or someone from the opposite neuro-side vehemently combating the words the previous commenter had to say. There is a lot of resentment, frustration, and anger within the context of every blog or article post that leans heavily on one side or the other.

    Then there are the articles published by individuals who have a “title” behind their name lending assumed credibility to the advice they have to dole out. I have yet to discover one of those articles containing anything but vague oversimplifications in lieu of useful guidance on how to make an Aspie/NT marriage happy. The majority of the time they are giving a broad overview to entice the reader to purchase their book or subscribe to their page in order to generate a financial profit while giving nothing substantial in return. I have been a sucker for these self-proclaimed experts and I have put my credit card information in to more of these websites than I care to admit to. I don’t actually know if I am embarrassed to say that, or if there is a part of me that takes pride in knowing I have truly sought out every web-based offering I could uncover. Regardless of how I now feel about the wasted money I have pumped into the pockets of undeserving “professionals” out there, I feel as though it has afforded me the right to tell you not to waste your own money.  I can now tell you for certain that the claim that you will find answers after providing a small amount of currency, are groundless. On the other end of the payment screen, you will receive no more than you had before you hit submit and you will regretfully discover you wasted more money on answers that none of these people have.

    It is my personal belief that none of them have the answers because none of them actually know what it is like to exist in an NT/Aspie relationship and are therefore guessing and attempting to implement what their cherished professional literature has taught them. Remember that the professional literature in existence on Asperger’s Syndrome is scant, and there are no significant studies yielding successful/proven therapy for Asperger/NT relationships that anyone can passionately stand behind. You have the same access to the tools they utilize to dish out advice if you take the time to look for them, so it is with my strong urging that I implore you to cease your searches for specialized guidance within the context of online articles.

     

    The most important thing you can do for your relationship is problem-solve for yourself

     

    There will never exist a single person who can provide you with the right advice on how to remedy your own interpersonal difficulties within your marriage other than you and your spouse working together. So then the next question is, “How do I get us to work together when he is so disinterested in doing so?”

    The answer to this is to utilize a step-by-step process. You must first truly educate yourself on your husband and the way his mind works (yes, I agree with THAT “expert” advice). Your husband is not going to do this, and he is not going to suddenly stand up and proclaim that he is incredibly vested in learning all about you and the way your mind works. Keep wishing, it isn’t going to happen. If your husband does do this you are in a very, very rare minority and you are the envy of every other NT/Aspie couple out there.

    If you are in the majority and just starting out, I highly recommend beginning with the book The Complete Guide to Asperger’s Syndrome by Tony Attwood.

    This book is and always will be the launching point to understanding your husband and giving you the foundation you will need to begin learning how to problem solve for yourself. While I mentioned that you do not necessarily need to seek expert advice to help your marriage, I would be remiss if I did not tell you that there is zero chance you are going to figure it out on your own if you do not educate yourself first on what Asperger’s Syndrome actually means and how it affects your husband’s daily functioning. It is incredibly important to start at the beginning of his life and comprehend how a child with Aspergers comes to develop the negative behavior patterns that exist as an adult. In this book you will be taken back to the start, and you may even find yourself developing a sobering sense of sadness when you imagine what it must have been like to grow up the way he did, never knowing WHY he was so “different.” This level of empathy is going to help you on your journey to finding the answers you seek, I promise.

    Even if you have been married years and have read all about your Aspie husband, if you have not read THAT book… pick it up. You can go through this link (The Complete Guide to Asperger’s Syndrome), you can go to the bookstore, you can ask other NT’s to share it with you… however you get it in your hands, you really SHOULD read it. If your husband is not diagnosed, or if you suspect he has Aspergers but are not yet certain, this book will help you solidify and confirm your own suspicions. I recommend you also grab a highlighter if you have the paper version because this is fun (ok, not really fun, but definitely enlightening). As you read, highlight the things that sound familiar or resonate with you in regard to your husband, self, or relationship. I tell you to do this because there is an incredible likelihood that by the time you finish the last sentence, you will realize that you have highlighted far more words than not. You can look at that incredible amount of bold color and realize you have your confirmation and you no longer need to question what you already know in your heart to be true.

    Ok, so you have read the book and it is bright pink, or yellow, or whatever color you chose. Now what?

    The next thing I suggest is going to the RIGHT webpage for the hard cold blunt reality check you need to determine exactly what you are up against. The book will make you have a ton of emotions and the humanizing of your husband will serve as your base when you go on to the crude truth that frightens you and makes you cry yourself to sleep at night.

    Of the many options before you to go to, there is one website that I have always found my way back to because of its genuine accuracy called The Neurotypical Site. I have enjoyed this because there is no ambiguity about who this website was intended for, and there are no hateful words within it (outside of some comments by readers). It was created for an NT partner (predominantly female/wife) who is married to an Asperger partner (predominantly male/husband) and it is a good place to go to after developing a fact-based understanding of your Aspie husband.

    I cannot say that The Neurotypical Site is an overly positive or motivating website because it is not filled to the brim with happy stories and inspiring words to keep the NT in their relationship and fill them with hope. It is quite the opposite of a place to inspire hope in you, it is more of a place to find like-minded people who will offer the incredibly important sense that YOU ARE NOT ALONE. When you are married or in a long-term relationship with an Aspie, you are going to feel like you are alone A LOT, and this sense of isolation can and does create an NT who begins to aspergate themselves without realizing it (See: WHAT DOES IT MEAN TO BE ASPERGATED).  <—- this post is still pending (I am working on it diligently, I promise)

    No, this website will not make you feel happy, and it is not meant to. It is not meant to offer the same insensitive advice that professionals dish out telling the NT partner to adapt and adjust their thinking patterns and behaviors to their Aspie mate in order to create a harmonious home. That is the worst thing you can do if you want to make your marriage successful and mutually beneficial to both parties. The author/s of the website tell it like it is, straight up, without mincing words. They are not nasty or cruel in their depiction of what an Aspie/NT marriage or relationship is like, they are just honest and unapologetic and what they say is both accurate and comforting to the NT woman who stumbles upon their words.

    With all of that being said, I can appreciate how someone with Asperger’s Syndrome would read the pages within this website and think that it is both unfair and incorrect. I can certainly see why they would think it spreads hate-filled words to the world about their disorder. This other side, comprised of individuals with Aspergers are not wrong to perceive it this way. From their perspective, the things said within this website are inaccurate and bigoted because they are unable to see how their actions or words are received on your end. Without the natural use of Theory of Mind, their intentions are all they know to be real. If an Aspie had no intent to cause you harm in their words or actions, there is no chance they are going to believe you when you tell them they did.

    As you navigate through this website I would like to highlight two very important pages that I have copied and gone back to many times over the years. I would love to copy and paste these into my post but I will refrain from doing so without permission of the author/s. I will discuss the content to some degree because I think it is important for the NT spouse to go back to these often when you find yourself completely paralyzed by the compounding frustrations of your failed attempts at communicating.

    The first is The Bottom Line which lists the somber and upsetting truth of what you will or may already feel is your life and the role you currently play in your relationship. I completely agree with this list and I absolutely believe this WILL be your future if you are unable, unwilling, or unsure of how to alter this dynamic. It is important to read this because I want you to know you are not alone in how you feel, and while you may not want to readily admit that this is your current world, at some point you will come back to it and find yourself submitting and accepting it as reality. The only thing missing from the list is number 13, the author says that if there were a number 13 it would be to “Give it up before you get involved.” I disagree, I think it should say:

     

    This is going to be your Bottom Line unless you radically shift your perspective and think far outside the box that’s been set before you.

     

    The second page on The Neurotypical Site is a table called the Effects of Differing Neuro/Developmental Levels on Neurotypical/Autism Spectrum Adult Relationships. I cannot stress enough how imperative it will be for you to keep this table close by at all times if you want to REALLY begin to understand how your communication attempts go awry, you need to have this readily available to you. Each and every time you find yourself faltering in creating or maintaining a meaningful discussion with your husband, every time his words, actions, or lack thereof cause you grief… look at this table. Find yourself on the left and follow the row to the resulting feelings you are experiencing. This is going to give you a greater understanding of the cognitive processes at play on both ends directly AFTER a misunderstanding or negative reaction occurs. Having this tool is also going to be vital to you in immediately validating the resulting feelings you are experiencing.

    I will disclose that looking at this table and the The Bottom Line list at this point in my relationship with my husband, I no longer view those black and white words as concrete and unalterable.

    I have felt and agree with everything printed within these two pages, and I recommend them to you as your secondary launching point after reading Tony Attwood’s book. It was absolutely imperative for me to utilize both of these tools to get to the place I am at today. I cycled back and forth many times reading the book and that website and found myself falling down a rabbit hole of other damaging articles and blogs along the way (that served no purpose outside of created resentment and utter despair in my search for happiness). Eventually, I was able to re-ground myself. In the end, going back to the book, re-reading it in its entirety, and then keeping that list and table close by and continuously referencing it for nearly five months, I found the inspiration to begin shifting the dynamic that those two reference points suggested were my definitive future.

    I am not bullsh*ting you when I tell you that your life does NOT have to play out this way, it CAN be different. Your husband can learn to behave empathetically toward you, and although he will never see the world through the same eyes, you can help him see through yours and vice versa once all the defensive coping mechanisms that are keeping you separated get broken down.  This can happen.  There exists the potential for you to be more than a caretaker to your husband, and there exists the potential that your husband will begin to WANT to take care of you as well. I know, I am living it as I type these words.

    Start with those two recommendations and I will lead you on to Step #2

    If you really follow them, this is the very first and most important step you can take toward discovering and developing your own problem solving skills to better your marriage.

    I would not tell you this if I did not believe in my heart it was going to work.  I came back to Step #1 many times, and it was not until I actually did these two things and avoided all of the other options out there (to fix my relationship) that I began to see a pathway before me that had not previously existed.  

    If you have not already read this post, it is my STEP #2:

    See: WHAT ABOUT ASPERGER’S SYNDROME AND EMPATHY?

     

     

     


  • ASPIE/NT MARRIAGE: WHAT DOES ALTRUISM HAVE TO DO WITH IT?

    IT PUT YOU THERE & IT KEEPS YOU THERE… How altruism plays a significant role in an Asperger/Neurotypical marriage


  • MY ASPIE HUSBAND: WHO IS HE?

    MY ASPIE HUSBAND… A man of few words (about himself).