To Create Hope for the Hopeless
It is time to be honest about our reality
Stop looking for experts to help us
(We are the Experts)
Can anyone tell us when we should give up because we have nothing but a bunch of dead ends in our path?
Can anyone even grasp what it is like to be traveling on a road that has no apparent outlet in sight?
Can anyone else understand why we believe in our soul that we CAN find the path that leads to beauty…
WHAT IF I TOLD YOU THIS WAS ACTUALLY ON THE OTHER SIDE OF THAT SEEMINGLY DEAD END?
ARE YOU GOING TO GIVE UP BEFORE FINDING IT AS WELL?
The last five years have been the most challenging, debilitating, emotionally exhausting, heartbreaking, and painful years of my life.
I give you this very personal and private insight into my life since I met my husband John to bring a sobering sense of reality to the above statement. Compared to the life that existed prior to this relationship, I thought I was going to be impenetrable to emotional pain. Living with a man who was undiagnosed Aspergers his entire life, who had 30+ years to build defensive mechanisms to protect himself from the cruel world that unfairly judged him… topped any amount of stress or pain I had ever experienced before (tenfold). Just when I thought I could survive anything after the suicide of my first love, the father of my beautiful daughter… I realized I had only touched the tip of the iceberg of what true emotional agony felt like.
This blog is something I have spent a lot of time thinking about. I have used my computer (and a pen and paper) to write down my life as it unfolded over the last five years.
I wrote it down because I did not have anything else to do (or anyone else to talk to) about the world around me. I wrote it so I could go back when my emotions subsided and reflect on what had occurred between John and me with a clear mind, in an honest attempt to decipher what was actually happening. I wrote it initially because I thought I was going insane. I thought I had to be misunderstanding, improperly recalling, or utterly distorting interactions between he and I. I wrote it for my own sanity. I wrote it all with the intention of never allowing anyone to see it or uncover the fact that I was clearly a mentally unstable woman.
Part of the reason I thought those things about myself throughout the course of five years was because the world is completely in the dark about Asperger’s syndrome. The more I thought I was going insane or imagining things, the more I searched for answers and came up empty.
The internet is filled to the brim with pissed off Neurotypical spouses emotionally attacking their Asperger partner’s character and equating them to psychopaths who cause pain for personal pleasure. There is a rather balanced number of equally pissed off Aspie spouses/individuals ready to defend themselves with their condescending logic who are delighted to deem all NT spouses to be the REAL insensitive and unstable ones who lack compassion and portray obvious “empathy-issues.”
Every once in awhile (if you make it past the first page with the same useless ambiguous “advice” listed) you will find someone who sounds like they are going to give some real insight and tips to navigate through an NT/Aspie relationship. It all amounts to nothing when the majority of the information includes the Aspie spouse learning to accept things as they are or compromise 95% of who they are as an individual if they intend on being “good” to their Asperger spouse. No one will readily admit that this is what they are suggesting… but it is.
Those suggestions have been some of the worst and most disgusting loads of pure garbage I have assaulted my eyes with over the last few years. “Professionals” telling a human being to compromise themselves to appease someone else’s rigid behavior. Nice thing to tell an NT who is just desperate enough to try that out…
Naturally this is akin to reinforcing poor coping skills in a child and has ONLY the potential of increasing the distance between the two. Those dumb-ass professionals know better than to say something so stupid (but they have lots of ads on their pages, don’t they?).
Eventually the NT spouse shuts the net down and heads out to real literature and in-person guidance. Only, they are in the dark just as much as the rest of the world.
The mental health community has opted for decades to turn a blind eye to a disorder (I do NOT like that term) so prevalent in society they cannot yet fathom the devastating ripple effect it has caused for all of the adults like my husband that are struggling each day.
To add insult to injury, the path that appeared to be headed toward something fruitful for a fleeting moment… was recently sabotaged by the collaborative effort of the very people entrusted to get it right so long ago.
It astounds me to this day how that many “professionals” came together and agreed upon shoving Aspergers, classic autism, and anything else that had remotely similar behavior patterns, social deficits, or probable genetic links… into a meat grinder and marketing the cluster-fuck end-product as prime cut elite Kobe steak (i.e. Autism Spectrum Disorder). I will rant in great length about this in the future.
I may not be an altruistic person in general, but those are my intentions in everything you read in this post and the many that will come after it. I hope, if for nothing else, my writing generates enough traffic to surpass the 10 posts that have sat at the top when someone types: “Asperger husband” into the search bar (that have sat there for the last five years).
This needs to be back in the forefront because people are suffering horribly and needlessly and I am justifiably angry at the mental health community for failing the adults out there, their families, and the children who would benefit from honest research and focus. I am tired of not having the tools needed (to help my marriage) within my reach and I can no longer sit silent and wait for someone else to get it right.
I hope someday my writings reach the mom’s out there who are wondering if their Asperger son or daughter will ever find someone that loves them and have the opportunity to marry or have a family. This needs to be out there for the women who are searching the same topics I have been for years, and coming up with only negativity and no real breakdown by subject matter, question, or behavior for the adults out there (other than the tips to run… fast). It is not because I have answers, but because I hope they will have the same questions and find one single person who took the words out of their mouth and makes them feel ok.
Perhaps I can save another woman from getting her hopes up over a new method to communicate that I now know is a failure, and will be for the others who try it.
Every failure becomes another straw on the camel’s back, so I revel in the thought of helping even one person ease the load. Besides, I wholeheartedly believe that someone out there holds the key to making an Aspie/NT relationship a mutually beneficial and positive union, so why can’t it be me?
Through all of my research I can promise one thing; despite behaviors that appear similar; Aspergers is the sole result of one and only one absent cognitive processing ability… COGNITIVE EMPATHY. *KARA FACT*
Whether the neurological pathways that cause this deficit are similar, or the resulting symptoms manifest in similar ways, or there is a genetic link between parents with Aspergers and their children being more readily diagnosed with classic autism… it makes no difference what attempted justification is spewed. It is a gross miscarriage of medicine to lump it all into one category/diagnosis when there is really only one debilitating impairment that needs to be heavily addressed. Address that, early and aggressively… and all of the other resulting issues, symptoms, or behaviors that an adult with Aspergers experiences in their lifetime… they stay dormant or at least minimally disruptive to that person’s daily life.
The simple fact is…
- Aspergers is not the same as Autism and does not belong in the Autism Spectrum Disorder category.
- All Aspies share ONE defining cognitive process that is lacking (Cognitive Empathy) that subsequently causes every other “symptom” the experts want to use to link the disorders together.
- Aspergers cannot be identified the same as classic autism, high-functioning autism, or any other autism diagnosis and if a professional attempts to impose the criteria required to diagnose Autism on a person with Asperger’s syndrome, they are going to miss the diagnosis they rightfully need to improve their lives.
- Asperger’s syndrome will also present differently from males to females (Nature vs. Nurture) and there are multiple reasons this occurs. There are far more Aspie women out there who are needlessly suffering because they do not display the “stereotypical” image of a male Aspie.
- Asperger’s syndrome cannot be treated the same way as autism.
The frightening epidemic on our hands today about the steadily rising diagnosis of ASD in our children has gotten disturbingly out of control! The potential to provide proper and effective treatment is becoming paralyzed as each day passes by the misunderstandings that abound in the label “Autism Spectrum.” The ASD diagnosis continues to find its way into daily media outlets claiming to be bringing attention to and lobbying for advocacy on a subject by which few even have appropriate, accurate, or beneficial information to share in the first place. Those adults (and their partners) who have Asperger’s syndrome are getting lost in the shuffle. I hope in the end you will draw the same conclusion I have that it is just a lot of smoke and mirrors to excuse what was really ignorance of an entire subgroup of our society as far back as the written word in psychiatric medicine on Aspergers and Autism Disorder can be traced.
By grouping everything under ASD the pathway toward any enlightenment becomes confused and darkened and the missteps and damage caused by this to the Aspie individual (and their loved ones) becomes catastrophic and counterproductive toward living the life they rightfully deserve.
As long as the mental health community continues to fail those with Aspergers and their families… there is no way they can say there exists even a shred of hope in developing successful interpersonal relationships for any of them.
Right now, the question: “Is there any hope for an Aspie-NT marriage?” can only be answered by saying, “Nope.” There is absolutely zero reason to ever buy into the hope that an Aspie/NT relationship can work if you are going to continue to count on the current literature or examples readily available at your fingertips.
I am writing this to tell you that your best option is to abandon the media and all of the misguided, misunderstood, inappropriate, biased, damaging, and counterproductive crap that is out there right now. I am writing this to tell you, Yes! There is hope if you opt to abandon everything you think you know and allow your mind to start all over again at square one.
Neurotypical wife: YOU ARE THE HOPE.
I understand that this blog will be met with some harsh critics and ill-appreciative “anti-fans” of my writing. I accept that few will come to the same view I have and that those who do, are going to predominantly identify themselves as highly-empathetic neurotypical women married to a man who has Asperger’s syndrome (diagnosed or not).
That is who I am writing this for…
I know that NT women (wife, girlfriend, mother, sister, or daughter) who love a man with Aspergers will (more often than not) back the things I have to say. At the end of the day, it is that subgroup of society who motivated me to stop withholding the truth about what our lives are like and the things we want this confused world to know about our Aspie loved ones. I know I do not exist in a vacuum, there are thousands (if not hundreds of thousands) of NT-e women and Aspie men out there suffering silently and dying inside. I am no longer willing to sit on the sidelines and watch society grossly spew negative, false, and damaging information under the guise of acceptance and advocacy. I will no longer pretend that the mental health community deserves legitimacy in their knowledge about Asperger’s syndrome and I will no longer trust that their credentials outweigh the personal knowledge and research I have to share. I most certainly refuse to support the direction they are taking Autism Spectrum Disorder “education” when it was their gross negligence that failed to diagnose, treat, and prevent pain for the men like my husband who are suffering because of their f#*k ups. The only people who should be educating, advocating for, and offering beneficial tips on an Aspie-NT relationship are the neurotypical women who have sacrificed the better part of their life and selves to loving an Aspie man.
At the end of the day… these women will ultimately comprise the group of like-minded individuals capable of correcting this disheartening error in history for the betterment of our entire society.
In everything that I write, I realize there are going to be outliers. There will be a small percentage of NT men (married to an Aspie woman) who also belong in this group (as they most certainly exist). There will also be NT women who have a wife or partner with Aspergers and/or NT men who have a husband or partner that is an Aspie. I am not intending to highlight the heterosexual or traditional male/female – husband/wife dynamic alone, but this is MY dynamic and this tends to be the dynamic of the most vocal individuals screaming to have their voices heard within the online community.
The hardest thing for me to deal with writing this blog is the group of women rightfully diagnosed with Asperger’s syndrome who will want to scream out that they do not fit my cookie-cutter description of an Aspie Male. This will be true, and this will be explained in many blog posts to come. I believe that female Aspies are NOT going to present the same as their male counterparts (with some exceptions) and this causes one of the biggest misunderstandings and reluctance to believe that Aspies do not have cognitive empathy. There is a reason for this (I believe) and I ask you to take this into consideration as I write my posts directly about relationships between Aspie males and their NT-e wives.
With the above being said, and due to the very nature of those most likely to stumble upon this blog, I will utilize terms referencing an NT wife and Aspie husband almost exclusively at the risk of being called sexist.
I also forewarn you that I will make a general assumption that the majority of women who take the time to read anything on here have an extremely high empathetic processing ability. It is my belief (and there have been some attempts at poorly funded studies to back this theory) that the vast majority of women married to an adult male diagnosed with Aspergers later in life (or undiagnosed but warrants one) are caretakers of some kind in our society. A nurse, social worker, teacher, homemaker, or other professional role that requires compassion that extends beyond self; they are going to overwhelmingly comprise the group who gravitates toward… and then sticks it out with the self-deprecating, unrewarding challenges that often come with marrying an Aspie.
Yes, there are rewarding and wonderful aspects as well… there is a reason we fell in love with our Aspie partner and there is a reason we spend countless hours desperately searching for help. We would not have this desire, motivation, or desperation if there was nothing incredible and beautiful to salvage and fight for in the first place.
Unfortunately, before we can begin building on all of the positive parts, we must acknowledge and understand all of the circumstances, feelings, and behaviors that are in play to undermine them. That means… we have to be honest and blunt and let it ALL out there… regardless of the humiliation, sadness, or hurt feelings this level of raw honesty conjures up for ourselves or partners.
It may seem counterintuitive to finding positive behaviors by openly “spewing negativity” (as my husband puts it) but there is nothing to be learned if we (the NT wives) continue to hide the reality we know from the world or minimize what our lives are truly like. All we are doing is effectively reinforcing the negative coping mechanisms to try to fit in that our Aspie husbands have been struggling to do their entire lives.
What good has that brought anyone?
We cannot solve our problems with the same thinking we used when we created them. -Einstein
It is going to frighten me when I click “post” on each and every writing I publish and put my personal life out there for the world to see and likely criticize. It took a long time to decide that opening myself up to this vulnerability is worth the possible reward at stake. My husband, my daughter, my coworkers, my in-laws, my nieces and nephews, future grandchildren (and hopes for the future in general) require us to start vocalizing what we know, what we have learned, what we can share, and what we have suffered through to bring awareness to Asperger’s syndrome.
To date, there have been no significant studies… ever… to analyze or account for the number of adults in our midst who have Aspergers. You can look. You can spend five years attempting to combat my empty searches for people who gave one damn about this forgotten population. Hopefully in your attempt to do this, you will find that not only is there no vested interest in taking on this crucial task, but of the children diagnosed with Aspergers in the last two decades… any plan to follow them into adulthood and draw statistically significant information from the status of their lives as they age… has been abandoned.
THERE IS NOTHING
We can thank the brilliance of sweeping Aspergers into ASD for this. Professionals can get government grants to fund Autism Spectrum Disorder research and the links that could be a cause without much effort these days (comparative to other mental health disorders). Every day we can web surf for a few minutes and see how dedicated our society is to uncovering any possible correlation they can to why our poor children are being swallowed by this “horrific and new” epidemic. The media is all too happy to spew their ridiculous rhetoric and new theories as frequently as the sun rises.
As a society, the hundreds of thousands (I suspect more…millions?) of living breathing adults who are your neighbors, coworkers, family members, etc.; they mean nothing because they are ignored (and lumped into a category by which they do not belong).
I do not think I (alone) am going to change the world with this blog, I simply want to reach those that are as enlightened as I am. I want to share what I have already spent years researching in hopes of saving their effort and inevitably joining like-minds for a positive and needed change. If someone takes anything positive from a single sentence I create… that will be a special bonus for me and likely cause a smile on my face as I fall asleep at night.
For all of the other people; the ones who comprise the majority… filled with apprehension, cynical doubt, unreliable “scientific data” tested under the wrong parameters in sample sizes too small or too isolated to yield valid and repeatable results… and those just plain ignorant of what it is like to live with a person who has Aspergers:
I beg of you to abandon this blog in lieu of “educating” us on something you are not in a position to do. You will not help us unless you have the empathy and knowledge we do, or you are the Aspie loved one who can share honest (non-defensive) insight in the hopes of joining forces to uncover mutually beneficial relationships based on love and commitment.
If you are not one of those two and still insist on posting your thoughts, then I beg of you to combat the things I will have to say in the proceeding blog posts by linking us to the appropriate information and offering the assistance we all desperately need. I beg of you to help us bridge the gap with the men we love and the children we want to spare from a life of under-diagnosed, misdiagnosed, misinformed, and misaligned treatment for their particular deficit.
The last thing any NT wife needs is another jerk offering negative and hate-filled responses that serve no real purpose other than to cause more hurt. That behavior is already what we find every day when we search for help to be with and love our Aspie family members.
For those NT women (and outlying men) or adults with Asperger’s syndrome, I ask you to post away. Be honest, be direct, and be vulnerable. That is what we need to open the right dialog. There is not a single woman out there searching the web for “Asperger relationships” that does so for malicious or cruel purpose… they all want to find hope.
If you feel you can contribute to that hope, please do not remain silent because we need you!
I hope you have a better understanding of why I am writing this blog now. I intend to be unfiltered and honest. I will try my best to offer references for any significant points I make along the way. I promise to offer full disclosure when I am writing about my strictly opinion-based theories developed solely on personal experiences. I intend to share every unconventional tactic and tool I have been utilizing in my own marriage to find happiness. I will share my failures, and I will share my successes (the latter are more common these days).
I am going to be opening my life up to the world in a way that extends beyond ranting in a few posts during the week (although that is where I will begin). I work a taxing schedule so some posts may take longer to publish, but I promise, I am committed to seeing this through for everyone. I WILL NOT be another blogger who writes for a few months/years and then disappears leaving every NT out there assuming that I must have failed as well. If you do not hear from me for a while, please know that it is directly related to my professional obligations and not a failure in my relationship. If my relationship were to “fail” I promise, you will be the first to know. I hope that eventually my husband, John, will be joining me in writing along the way and be willing to share his thoughts and provide his “Asperger husband” perspective and/or answer questions anyone may have, but he is not there yet. He has given me his blessing to “post away if that makes you happy.” He is fully aware of and supportive of the deeply personal information I am sharing with the world (hopeful I will not portray him as a “bad person”).
I will share a lot of *Kara-Facts* along the way: These should be viewed as absolutely unproven theories I think make logical sense in my emotionally-driven mind. I am aware that few will have scientifically proven foundations, and others… they will just be theories tossed out by someone along the way that I really identify with. I hope that by identifying upfront that things I say are *Kara-Facts* I might deter the desire to argue the validity or merit behind something that I already know cannot be backed with such.
I am going to also ask you consistently throughout the blog if you are “TRACKING” me? Tracking: A military term used to convey acknowledgement and/or understanding. I have always loved this question from instructors or leaders throughout my military career and have every intention of stealing it for use within my blog. I will ask you this to let you know that I am acutely aware that I go off on tangents a lot and that my sentences can often be difficult to follow (lacking appropriate punctuation and pauses). So when you see the word Tracking, just know that it is my way of checking in to let you know I am partially apologizing for the strain on your eyes, and partially begging you to re-read what I just wrote because I find it profoundly important.
AT THIS TIME… ALL SIGNS POINT TO INEVITABLE FAILURE IN FINDING A HAPPY NT/ASPIE UNION.
I believe your marriage can get better… even if you’ve been together for 50 years. I believe that the professionals have gotten a lot wrong and that the information you have found trying to salvage your sanity and marriage… have been effectively useless (for the most part) and may have even damaged your marriage further. I believe there exists new and creative ways to develop our own strategies to improve our marriages and that it is time for us to begin sharing them. I believe that the answers do not lie in the failed examples from the past and that if we are going to continue to navigate through the hellish parts of our dynamic, we are going to have to stop allowing the past to deter and demotivate us.
I will never advise you to just accept things the way they are or compromise who you are as an individual, and I promise that I will never suggest you try to change who your husband is either. I will only give you ideas and proven methods to adapt negative or ineffective behaviors that have worked for my marriage.
- It doesn’t have to come down to your happiness or his.
- You don’t have to lose yourself to find a happy marriage.
- You don’t have to suffer like this any longer…
Desperation and hopelessness took me to a place where I abandoned all advice and went out on a limb to save my failing marriage and so far…
IF SOMEONE OUT THERE CAN CHANGE THIS DYNAMIC…
WHY CAN’T IT ME?
WHY CAN’T IT BE YOU?
WHY CAN’T IT BE US?