Hello new here, looking for support

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Hi
I live live in The Netherlands with my dog, one of three children (the rest are grown) and my husband. I am feeling lost since his diagnosis of autisim. Well at first I was relived of his diagnosis, I finally had some idea what was going on and that I was not crazy. The problem is my husband refuses to discuss autism in any shape or form. He gets very defensive and then I am left with having to pretend it does not exsist, I can not talk aobut it and I can not learn what or how I can do anything in order to save our marriage.
I do not see my husband as austism, I see my husband who happens to have autism. I do not blame all our problems on autisim or him. I do think however his autism plays a role in our communication. Communication has come to a stand still and we are almost divorced. Do I want a divorce? Do I still love him? No and yes. Do I want to continue as we are today no. I need support or I am afraid we will be divorced. Breaking up our family is something I view as a last resort. I am willing to do what I can to save this family and my marriage.
We recently started couples therapy, our first session was yesterday. My husband left angry and has said little of the session but did agree to go again.
I am always trying to figure out what is something he can help and what is something he can not and more important how do I handle it, cope you know.
When my husband was diagnosed he never shared with me what type or where in the spectrum he is he just said autism and something about that this was why he was so practical in thinking. That made little sense to me and when I tried to get more to understand he got angry and shut me out. The door has been closed since.
He was diagnosed 2 years ago at age 43. Since then our marriage has went from strained to well we are like roommates now who tolerate eachother. We focus on our 5 year old mostly.
I came here while searching for support, I really hope to be able to at least talk about autism and learn more about it.
Thank you for you time if you actually read all this!

There are a number of articles on this site you might find useful. Also, Jessica Kingsley Publishing has some books about living with people on the spectrum.

Hello

I hope I can offer some help. I suspect I myself am on the spectrum and if this is true hopefully my advice will help. You said you have trouble communicating. Well autism is a brain disorder which makes communication difficult. It also makes controlling and expressing/understanding emotions difficult. I am terrible at communicating through body language and verbally. I am very good at communicating via type or print, although my handwriting is terrible. I suggest you try and express yourself to him through a letter. That way if he forgets he has substance to overlook. I get frustrated because my memory is terrible and forget what people say all the time. Also when I talk it definitely comes out as hindering my true intentions of speech.

Despite not having a diagnosis I probably can relate why your husband will not talk about autism. If he is intelligent and has a special gift he is very skilled at it is hard to grasp even in ones mind why there would be these seemingly insurmountable hurdles. It very hard to understand how one could be intelligent, yet incapable of proper communication of thoughts and feelings. I struggle with this issue everyday.

Perhaps he too communicates best by writing. Ask him to write whatsoever going on in his mind, through a letter of course. Tell him how you really feel. Chances are he can pick up on your emotions but can't properly filter out his confusion or properly react. This is because the system in the brain involved with learning is under active. It takes constant practice and reassurance to learn even social cues despite age. This is why autistic people all across the spectrum act age inappropriately and are socially awkward.

You must reassure him it's not his fault and obviously you fell in love with him for who he is despite any diagnosis.

I wish you both the best

Well, it often offends Autistic people to point this out to them, but the truth is, when you have autism, you are autistic. It isn't just a small part of who you are, no matter how much you would like to believe that - your brain's ability to process sensory information is a BIG DEAL and affects everything that ever happens to you throughout your entire life, because there is never a single second of your existence that is not being shaped by the way in which you perceive the world.

Autism is the warped, funhouse mirror lens through which we see everything around us, from the moment we're born, until the day we die. Until an autistic comes to understand that lens, they can never know who they really are. They will be eternally troubled, angry, depressed and riddled with anxiety and self-loathing. Unfortunately, even understanding it won't make all that go away, but it's much easier to live with once you know what's going on and why these things happen to you.

I'm only guessing here, but I'll go out on a limb and speculate that he doesn't want to talk about it because he thinks of the condition (or worries that you think of it) as a "mental illness" and can't stand the idea of anybody thinking he's ret*d, or crazy. Asperger Syndrome (now known simply as High Functioning Autism) is not a mental illness - it does not cause psychological or emotional instability or hallucinations, or non-rational states of any kind. It is a neurological dysfunction - a brain condition, involving hypersensitivity to sensory stimuli.

That means that the autistic brain has difficulty filtering the constant barrage of incoming sensory data - light, sound, smells, touch, voices, body language of other people, etc. The normal brain takes in this data stream and adjusts each individual element according to importance, so that humans can concentrate on what's important without being distracted by things that are irrelevant. The Autistic Brain, however, is so sensitive to all that incoming "noise" that it has trouble juggling it all and as a result, we may be easily distracted by things like small sounds or light or movement that most people unconsciously ignore. Things like maintaining eye contact may feel so overwhelming that they become physically uncomfortable, causing us to miss or misinterpret many nonverbal social signals.

Because of this sort of thing, we are often socially awkward and disadvantaged, have trouble making interpersonal connections and even clearly communicating with or understanding the motivations of, the people around us. Years of these sorts of misunderstandings and the resulting conflicts tend to leave us battle-scarred and shell-shocked emotionally, often the repeated victims of verbal abuse or even physical bullying. Divulging our true feelings becomes frightening and intimidating because we have so often been berated and punished for expressing opinions and emotions that seemed inappropriate or unacceptable to neurotypical people, simply because our brains don't work like theirs. We think differently because we experience the world differently.

After years of that, being questioned about one's personal thoughts or feelings can feel like we're being set up for an attack - as though the questioner were attempting to trip us up, or get us to say something wrong that they can then use to beat us up with. It's so easy for us to step on social toes and upset people unintentionally, after a while it becomes scary to even open your mouth. No matter what you say, it's sure to be wrong and get you in trouble.

It's that kind of treatment by the rest of the world that makes us very prone to high anxiety and chronic depression.



Our brains have a tendency to look for patterns and organization and our thinking is generally very rational and practical. I believe one of the reasons for this is that we are so easily overwhelmed by too much incoming sensory data, that the better organized we can keep things, the fewer unexpected surprises we have to deal with. I think this is the same reason we prefer ritualistic behaviors and routines and get very upset when people change things or cancel or alter plans. It overstimulates an already highly taxed nervous system and sends us directly into a 'Fight or Flight Mode' anxiety attack.

Thank you all! I can not express how good it feels to be able to just expess myself about this. At first I was afraid I was going to offend someone because I am so use to doing so with my husband. I have to admit most of the time I do not mean to offend anyone including my husband. It is highly counterproductive to communication! This seems obvious to me but I am afraid it is not my husband.

Your words really were resounding to me, confirming some thoughts of mine and opeing my eyes to see things I did not see before. It was like an ah ha moment. Okay it is a big deal! Becuase I have been trying to convince myself it is not. I admit it sure as heck feels like a big deal. Our couple therapist (who works only with Autisim and people and their families) stated autims is a big and not big. Even for my brain that was too contridictouary. I was like huh? So what is big and what is not big? You answered that very well for me. I have been so busy trying not to offend my husband that I was lost in words but you expressed what I already felt. It must play a huge role in ones life, and of course it plays a role in our marriage esp. communication.

I do not think my husband is crazy or mentally ill. In fact I can say I do think he thinks and behaves differently than myself and what I am comfortable with. He hears me saying to him that he is not normal. I have a hard time because in truth I do not feel he is alwaysin what I precive as the ¨normal zone¨. This does not mean I think I am always normal to him, in fact I am well aware of this. When I say normal I mean what I have grown comfortable with as far as predicting behavior in others I have had relationships with.

What you described felt as if you knew my husband personally. He is very anxious and has a really hard time expressing himself. He often gets angry at me for not being able to do so. He was bullied in his youth, he has strained relationships with his family memeber except his father who is just like him I do think this has left him a bit shell shocked but I do not think he sees it at all. But helps for me to keep this in mind.Willard you wrote...troubled, angry, depressed and riddled with anxiety and self-loathing. well that sums up my husband excpet the self loathing maybe. I suspect he is insecure and is not sure how to handle all those feelings. He often tells me he tries to do his best and be a better person. I often feel sorry for him to see him struggle so much and all I can do is watch. For my words to him never seem to help but only make him feel worse. If I get emotional it is really bad...

My question is this to all you who have autisim. How did you accept it and cope, do you talk to family signfificant others, friends etc about it? Is there something I can do to facilitate and not irriate? Any suggestions?

I have tried the letter writing but maybe will try it again. It felt cold to me at first and I thought what kind of relationship do we have if all we can do is email. But maybe that is not so bad as long as we communicate and maybe it will open the door to face to face verbal communication.

When I fell in love with my husband I liked his honestly, I found it refreashing and clear. I respected and appreciate his IQ and how he could put things together and find solutions to things that baffled me most of the time. I also think he is a wonderful father to my children and better than most. I tell him this all the time. I have to admit I am not sure if he is a great husband. I do find it hard to cope when I see him act like a child in my view. I do not know what to do I also resent it most of the time. But you all made me see better what is going on. I feel if I understand things better I can better answer the questions I have about my marriage. Can I cope, how to cope ,are there tools? I think I am finding it hard to cope because I am with out any tools or understanding. I have not givien up on us. I read this post on this site and it scared the hell out of me. This person was so negitive about a marriage like mine, saying it would never work etc. Call me an optimist but I find that hard to accept. As stated my hsuband is not crazy anymore than I am. We think differently true. But we also have a family and we did fall in love and create this lovely family. I love him and always will even if we do disolve our marriage. The truth is I respect him and the more I learn about autisim the more I respect him.

In my opinion we all have challanges to live a happy life. Does not mean we can not be happy.

Sorry for the ramble... I am just overwhelmed with thoughts becaue I have not been able to express them they are bursting out like mad. Thank you

Thank you it will go on my google list