ASPERGER/NT MARRIAGE HELP: WHERE CAN I FIND A GOOD SUPPORT GROUP?

The question every Neurotypical spouse asks at some point

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I am a super big fan of these guys

Update:  

I took this post offline for a while for three reasons:  1. I was pissed off.  2.  I questioned if it could truly benefit an NT wife living with an adult Aspie. 3. I did want to endorse spending money on anything about Asperger’s syndrome (in general) unless I could personally attest to the value of it.  So let me explain:

I went to this forum religiously (for reasons explained below in the original post). I always knew when I posted a question to the members that I would receive some flak and responses filled with sheer ignorance about Asperger’s syndrome.  I always used those responses to inspire why I needed to begin sharing what “I” knew to be true. One day I opted to link my blog post: WHAT ABOUT ASPERGER’S SYNDROME AND EMPATHY? to see how the members would receive my opinions.  I fell asleep after posting it and awakened to a few personal emails that indicated my post had stirred up some hate-filled and bitter responses with ensuing arguments that got nasty (either toward me, or between forum members).  While the emails I received were ones telling me they enjoyed the post, or found it insightful, they also told me they thought it royally “sucked” the entire post had been removed by the forum administrators.  I had no idea that it had sparked all of this emotion, nor did I know it had been removed from the website at the time I read those emails.  I wish I could have stayed awake long enough to know exactly what the context was of all the negativity I had inadvertently instigated, but I never had the opportunity to read any of it because the forum administrators took that away from me.  

On this particular website, we all write controversial things (as ASD, Autism, Asperger’s syndrome and talking about something as important and emotional as our children does frequently trigger intense feelings).  It is not abnormal for many posts to lead to snarky comments and utter rudeness toward members with opposing viewpoints.  If someone gets particularly nasty, the forum administrators will delete their comment, but not the whole post that fueled the emotion.  

One of the reasons I kept going back was because the platform was so open, as I believed it was promoting honest discussions that need to occur about a topic so taboo and unknown in society.  This initial reason for being willing to pay to be a member of the group got me thinking.. there I was, advocating to my blog readers to consider this unexpected group (Aspie parents) to help them learn valuable lessons, perhaps they weren’t as “open” as I originally perceived? Despite not agreeing with the majority of information put out on it by the members themselves (not the authors), I was mature enough to look past that and find something beneficial from my membership.

When I learned my entire post was removed, I felt rather betrayed by the very creators.  I felt that they had cherry-picked my insight and opinion as being “too controversial” to leave up, while having no urge to remove the countless morons out there blaming vaccines and other unproven or ridiculous media-hyped links to Autism Spectrum Disorders.  It was because of this selective censorship that I became angry and took down this blog post for almost four months.

This pissed off feeling made me question whether or not the recommendation of other NT wives reading what these parents had to say would benefit them or cause them to feel more alienated and misunderstood.  It was because of this pissed off feeling that I decided I would not allow an endorsement that cost money to be made by me if there was any chance it could cause more harm than good.

Ultimately… after much consideration (and re-reading the original post), I decided that I would open it back up for you to decide for yourselves if there is something to benefit from it. In the end, I still admit this is the only group membership that ever benefited me in any way (despite joining many others in the past).

While I believe only one of the original founders of Asperger Experts is still involved in the website, I still have to say that it is worth checking out if you are interested in how current members of society who are actively raising Aspie sons (like your husband) are receiving, processing, and making sense of the information they have.  I think it will be beneficial to you to look inside the minds of these parents for many reasons but most of all, the creators do give an interesting glimpse into what it might have been like “in the mind” of your husband when he was younger.

 

ORIGINAL POST:

When a neurotypical wife begins their hunt for “like minds” to begin processing Asperger’s syndrome, they often consider joining forums to share their story and get advice.  More often then not, their search begins with reading tons of articles on the subject. When an NT spouse reads these articles, they may think, “Ok, this is good” but then when they look beneath it, realize that upwards of 90% of every response/comment is from an NT spouse who has (or is about to) give up on their marriage.

What began as a hunt for help turns into a feeling of hopelessness as they come upon more stories of utter negativity and failure.

I began looking into and following Asperger forums written by Aspies themselves (to avoid the hopeless NT pitfall). I had simply given up on the hostile and broken NT ones and had long-since abandoned the “professional insight” ones (since they never really gave me tangible advice I could utilize).  I thought perhaps going directly to the people who live in my husband’s fascinating world would yield better results.  I figured, if for nothing else, they could offer something the others could not.

Unfortunately, despite still following many of these writers and loving what they have to say and how they express their difficulties, challenges, successes, and general perspectives… I still came up empty in finding practical means of helping my own marriage.  It was/is sometimes frustrating to read the words of Aspie’s and know that they do not understand what it is that they are doing “wrong” that causes so much angst from the NT community (so they ironically vent equally about NT’s and their cruel and un-empathetic behavior).  I think that it is important for an NT spouse to read what the Aspie bloggers have to write still, and I will link you to some of my favorite websites in future posts that you may also love.

For purposes of something that might actually “help” you, this is what I opted to do at the end of my internet search for a good forum to join.  I wholeheartedly recommend to adult NT spouses married to a partner with Asperger’s Syndrome to do this:

Consider finding a DIFFERENT group of people for advice

I belong to a forum for parents of Asperger/Autism diagnosed children.  In all of my attempts to locate a group of positive people to provide support for my struggles, it was only this group that ever offered it.

With this private group forum I go to (daily) being dedicated to parents who are desperate to provide a good life for their children (is there any motivation stronger than that?) I get to see people who will never offer advice to “leave” or abandon their children.  This provides me with a new perspective of what it is like to see people who are also met with failure and struggles every day, who continue to maintain an optimistic outlook and strive for “something else” each time one avenue proves unsuccessful.

Since I hope I have sparked some interest in what group I am referring to exactly, I will let you in on my big secret. This group was founded by two young adult men, Danny and Hayden, who have Asperger’s Syndrome (they call themselves ASPERGER EXPERTS) and honestly… they are absolutely deserving of the title more than anyone else who uses their professional credentials to try to justify being deserving of such a term.

In ALL of the things I have read and searched for over the past five years, these guys (barely into adulthood themselves) have managed to make more sense of my husband than any adult or professional EVER COULD.  They are phenomenal men who are doing a wonderful service for parents of children diagnosed with Aspergers.  They refer to their forum as an “Asperger & Autism Parent Support Network” but I think by their self-proclaimed title you may see that they are what I consider “straight-up-Aspies” and likely as deserving of the Autism Spectrum Disorder label as my husband (sarcasm).  <—- If you have read my other posts, you are likely aware that I am NOT a huge supporter of the umbrella term ASD (to put it mildly).

The most incredible thing about these two Asperger Experts?  They are being paid fractions of what the “professionals” are making to spout off all of their brilliance in one useless therapy session!  I pay $14.99 per month to have access to better information and tools than any book I have purchased ever yielded (and I paid far more than that amount per month on wasted literature), so I recommend them to anyone who would like to find a “different” perspective who are also willing to spare some extra cash.

What do I mean by a new or different perspective?

The support groups intended to be positive for women married to Aspie men always end up being fueled with advice to get out as soon as possible and limitless stories of their Aspie’s negative behaviors and attributes.  They seemed to want to help one another initially (if you go back to the origins of the forums), but since every effort on their behalf ultimately fails… the only help they can offer in the end is to advise other women to stop wasting their lives and get divorced.

That is why the perspective of parents who would never allow the thought of leaving their own beloved child is so important to a Neurotypical wife who really just wants help, not tips on running away quickly.

It was in large, because of these parents that I first began adapting my attitude about my husband John.  I began to consider that maybe I should try to regard him with the same dedication I would give my daughter B, instead of always having one foot out the door.  Since abandoning my child would NEVER be an option to consider; I wondered how my mindset could change if I chose to delete that option for my marriage as well.  

The only problem with this forum (for an NT wife seeking help in her marriage) and the wonderful insight from these two guys is that they fall short of having a true grasp of what it is like to navigate through a marriage like mine or John’s.  They are the small statistic who has figured out enough to potentially avoid the very dynamic we (and so many others) exist in, and thankfully they are reaching thousands of parents with their insight to help those children grow into successful happy adults like they are.

Obviously another problem is that, THEY HAVE ASPERGER’S SYNDROME!  They are not going to be able to decipher what that “means” for the neurotypicals in their life and they do not attempt to make sense of that very often.  

Their focus is on enlightening NTs about how the young Aspie mind receives and responds to the world around them.  They haven’t the insight to enlighten an Aspie to the NT side (obviously not something to hold them accountable to).

Because of their inability to speak on behalf of an adult NT/Aspie relationship, even with the new found enlightenment they have given me, the path still hits a dead end for my marriage in a lot of ways.  It is one thing to begin to identify and correct coping behaviors and misunderstandings in a person’s childhood and adolescence… it is an entirely different ballgame when we are talking about 30+ years of negative behaviors and belief-systems that are near-impossible to penetrate.

It is far easier for a parent to influence the behavior of their child than a spouse for their husband.  As an NT spouse, we do not hold the awesome ability to utilize the same consequences for behavior and/or positive reinforcement and rewards that most parents have at their disposal.  In fact, if we offer ultimatums to our adult Aspie husband, we can typically expect a terribly hostile and defensive defiance… which creates the very parent/child dynamic we are so desperate to extinguish in our adult partnership.

 

Regardless of the inability to speak directly on the topic of an Asperger Marriage, the tools Danny and Hayden give are a phenomenal foundation in any Aspie/NT dynamic and the support group members themselves… priceless!  

Fair warning:  The parents (mostly moms) in this forum do not mince words and they are unapologetic in their critiques or opinions (I actually find this helpful once I let go of my instinctive feeling of rejection when they disagree with me).  If you are someone who does not handle rejection from outsiders well, tread lightly before you post a strong opinion on here.  If these parents think (for even a split second) that your words are incorrect, biased, or painting a bad light on the children they love… they are like mama-bears protecting their cubs and go for blood.  

On the flip side, there are no bigger advocates then these parents when it comes to finding answers and help (as misguided and misinformed as they often are).  It is not lost on me that these mothers can become a driving force to altering the current crash-course Asperger/Autism education is on (if they ever get the right information in their hands).  

Since you will never find a group of people that rally behind one another for a positive cause (to better their children’s future) like these parents, I would be remiss if I did not share with you that this website/forum has helped me.  It is worthy of consideration if you are tired of listening to people who think giving up is the only viable option.


8 Responses to ASPERGER/NT MARRIAGE HELP: WHERE CAN I FIND A GOOD SUPPORT GROUP?

  1. Pingback:ASPERGER/NT MARRIAGE ADVICE: WHERE DO I GO FOR HOPE? – Happy Asperger Marriage

  2. Avatar carol Grover
    carol Grover says:

    Excellent! I will be following

  3. Avatar violet
    violet says:

    Glad that this page exists – living with my partner is unbearable… the biggest hurdle is that he doesn’t see a problem with anything and won’t listen to me at all. Do you think writing a letter to him might help?

    • Hi violet, I can understand the frustration you feel. In my past, writing letters was useless, but that’s because I never knew how to simplify what was upsetting me and/or what I wanted to change. I ended up writing novels that sounded like the ramblings of a crazy person filled with emotions that placed blame on my husband for everything. Because of this, my letters NEVER worked (they did the opposite).

      If you can find a way to simplify the things that are upsetting you or that you would like to see change into statements that make sense (to him) by identifying a problem and then offering mutually beneficial solutions as options (in lieu of just saying, “You do this, it makes me feel XYZ, and you need to change!” I think letters CAN BE beneficial because they take the difficult back and forth part out of the communication enough for an Aspie husband to take on board the suggestions and feelings his wife is sharing.

      As a silly example, try structuring your sentences like this: “We rarely hold hands in public. I can understand how you don’t enjoy holding hands, but I really do. I feel loved and proud to be with you and like you are proud to be with me when you hold my hand. Even if you think it is silly, or even uncomfortable to do, it is very important to me. It would make me feel incredibly happy if you just reached out for my hand in public from time to time without me having to ask.” in an innocent (but common) example like this, you would be shocked how positive the response is if you say it in a loving and positive way. This specific example worked for me! Now my husband even holds his hand in the small of my back when we are walking into stores… cheesy or insignificant as it may be to others… it means SO MUCH to me!!

      In constructing a letter to try to bring about positive change, the idea is to identify a problem, misunderstanding, or drawback in your relationship (without blame), give recognition for why he may be acting/responding a certain way (with acceptance), and then come up with a balanced solution for you both. This is easier said than done and something I am working on clarifying in a more practical way for an NT-Aspie marriage.

      Difficult as it may be to believe, your husband (most likely) does not have a problem with things the way they are because he doesn’t empathize with why YOU see them as problems. Crying, venting, or “nagging” about them will not make him see them any clearer (although I completely understand why a lot of NT wives reach that point in their communication attempts. If you attempt to help him see something “wrong” by telling him HE is wrong, something is entirely his fault, or that he is “purposely” trying to cause you emotional turmoil, he will tune you out 99.9% of the time (often after an angry response first). It is rarely a matter of “not caring” as much as a matter of poor communication lines; you speak in a way he is not able to comprehend and he just wants you to say things in a way that are not so ambiguous or “hurtful” to him. I am NOT suggesting you are a poor communicator or that you are not justified in anything/everything you may verbally articulate (not at all); I am just letting you know that he cannot “hear” the majority of what you are trying to say unless you use simple words and speak slow enough for him to process one thing at a time (we NT’s like to bounce from one thing to another until our Aspie husband’s are too overwhelmed to keep up and tune out instead). Taking the blame out of an attempt to fix something in the relationship is hard and often feels unfair to the NT wife who already feels like they are appeasing or walking on eggshells for their spouse as it is. Removing the blame from him is not a submission to his way, it is a way to get him to open his mind up enough to empathize with you the best he can so he can do something about it and enact positive changes.

      I hope this makes sense, I really am working hard to put up a few posts that break this whole thing down. Thank you for reading, I have some time off in the next few weeks and hope to get some more clarity up for you (and others in the same boat).

      Kara

  4. Avatar Anthea
    Anthea says:

    Hello Kara, thank you for your post, I’ve found these issues as well when looking at websites looking for constructive help and only finding comments filled with hopelessness and negativity from NT spouses, so this struck a chord. I’m sure there must be plenty of successful NT/Aspie relationships out there that just don’t get represented on the internet forums because their relationships are functional and they don’t need to seek help on forums. Also relationships in our parents and grandparents generations I’m sure that weren’t even diagnosed because it wasn’t recognized as much back then but they made it work anyway. It feels like these forums just make the problems seem magnified and the probability of finding fulfilment diminished.

    Similar to the comment above, I’m struggling to work out the best way to communicate with my partner. Letters and lots of words don’t work. This week I’ve given him some thinking points about issues I see in the relationship (I tried to be as specific as possible and not use blame or be overly emotional) and said I need to think and I will talk to him in a week. I sometimes send him voice messages rather than writing long messages so he can take it in a bit better so that’s what I did in this instance. I don’t know if this was the right thing to do though to withdraw for a week because I don’t know if it is going to make him feel hurt or if he will appreciate having some down time to think about things as well?
    Thanks

    • Agree entirely about there being happy couples out there that don’t share their secrets to success or search for answers via online forums; I know they exist. I also think you make a good point about previous generations because I have little doubt that Asperger’s syndrome is as prevalent now as it was then. Cultural shifts in society (and the internet) have certainly made men and women more vocal. It makes me sad to think that there existed a time when these men and women had even less of an emotional outlet than we do today because it was generally frowned upon to speak of personal hardships openly (by U.S. norms). The time frame I am thinking of is also when Valium was handed out to the “neurotic housewives” like candy though, so I am sure that assisted in medically alleviating some stress (I would have had a Valium-Pez dispenser on the ready if I lived back then!). Unfortunately, that temporary band-aid came with its own set of consequences. I guess from that perspective we have made some substantial progress and it is good to think of that optimistic take on our dynamics in lieu of the negativity we come upon via internet searches. 🙂

      As far as the best option in communicating… I have to apologize to you (as I keep doing in most of my reply comments lately), because I have very specific posts pending that give a plethora of options you could utilize to enable improved communication… but I am so pressed for personal time right now I have been unable to finish these posts. I am in the 3-month countdown window to a new job that will afford me plenty of time to go off on my rants soon, so please check back in from time to time.

      For now… I don’t think that temporary withdrawal is a bad option. I also do not think it will yield a dramatic response from your husband until the cognitive empathy shift (in communication) really takes hold. Small breaks can still be beneficial for your own mental health though, so I would never discourage them (I do not think they are harmful to the future of your relationship, but that is just my personal opinion). I would be remiss if I did not caution you to try your best to abandon your expectations when you do take these time-outs. I used to hope that a week, month, or months of time apart would enable my husband the time he needed to begin reflecting on his own actions and develop a desire for personal improvement. I was beyond devastated each time we would reunite and I discovered he had not stopped to consider any behavior modification (even once) during the entire time we spent apart. The only time (consistently) that Aspie husbands have life-altering epiphanies (whereby they desire personal change and have the motivation to see it through) seems to come on the heels of believing they have lost the woman they love. It doesn’t have to come to this (I hope to get my post up about this topic first), but without the right tools for dual transformation to begin… the odds of a light bulb illuminating just because you stepped back for a moment… they’re pretty slim.

      Keep looking for creative ways to communicate that veer from the norm (like your voicemail messages). There are small breakthroughs of communication in these non-traditional methods of expression with our Aspie husbands that help lay the groundwork for the ultimate goal of being able to communicate directly in-person. It’s a challenging road to travel right now, but the potential for success exists… I promise.

      Thank you for reading, commenting, and being patient with my lapse in posting.

      – Kara

      • Avatar Anthea
        Anthea says:

        Hello Kara, just had to say, thank you so, so much for your thoughtful reply. It actually made me tear up reading it –I think it’s really so kind of you to take the time to reply to me. It was just what I needed to read right in this moment and it helps so much. Thank you. Such a valid point about Valium and previous generations, it would have been the same here in Australia too and we are lucky in many ways in comparison. I look forward to more words from you on communication & I will definitely check back in for your posts when they come through. Good luck in the transition to your new job. 🙂 Xx Anthea