Re: I think my diagnosis just saved my relationship/adapt Long post

[Guest guest]

Hi , and partner

May I share a little of my own, NT experience? This is a long post, so get the kettle on.

Ian, when diagnosed, found it a relief and a curse, because he didnt know what was different and why he couldnt achieve the level of social success or life successes that he craved. Prior to meeting me, he had been married for 11 years but the relationship had broken down completely and when I met him he was a proud, solitary fellow who just didnt know why he workmates didnt laugh at his jokes, or appreciate his intelligence.

I met him over the phone when we edited a book together and he was warm and witty, and wrote great emails. We got on famously. When I met him I was shocked, he was bullish, twitchy, pushy and quiet all at once. However our relationship progressed, mainly due to my efforts, as I am very outgoing and had a wide circle of friends, and lived in a town where lots of artists and writers lived. He being a writer, this was his mecca.

Ron has written eloquently about how AS see things, and until I found this forum, as the NT partner I found I had to do a lot of changing - to allow for Ian and his ways and he came across as very needy. I now know that was his need to be 'safe'. He came across as very insincere sometimes - which I discovered was his 'script' that he used for various occasions, for when he felt like a fish out of water (most of the time) and he didnt know that sometimes the script was going to get him into trouble, more so than if he had kept his mouth shut. But he is very suggestable so he will be drawn to saying or doing something that he thinks is right, merely because when he saw someone else doing it, they got a laugh, or they were successful.

When I had been with Ian for three years I felt as though I had changed myself so that he wouldnt have to change; that he wouldnt be hurt, or be aware that his behaviours didnt suit other people in the mainstream of society. I was protecting him and making excuses, without knowing why, and the resentment built up and up.

I finally sussed the AS which I hadnt heard of, although at first I thought it was pure TS (Tourette Syndrome) because he has facial tics and large body movements. Then I met a pyschologist friend who told me that Ian had Aspergers after meeting him for ten minutes. We went on to have a formal diagnosis shortly after and Ian cried, it was a relief that he wasnt swimming against the tide after all. There were loads of others like him. But then he became 'bereaved' because of his lost opportunities, and angry because he could have done better in life if he had known before. And I became angry, for two reasons: a) is this IT, are we stuck with this - now its just me and him and its not going to get better or change; Why didnt anyone help him before?

I was bereaved too, and very upset that I now had this person 'on my hands'. I would have bolted, the thought crossed my mind hundreds of times. Its sometimes harder when you know the unknowns - there is no cure, and this is your fait accompli. But I didnt bolt, mainly out of pity at first, because I thought, heck, I cant leave him now we know what its all about. And for some months, we both hated the idea that it was all so final. But out of that, came our reality.

I read all the books too. I saw that I had been living with a very brave man, who struggled to interprete and who had also had an abusive childhood which made it even less likely that he could perceive the NT world around him in a healthy way. I learned about time out, being aware of his sensory processing (smells, noise, lights), not to take him (drag him more like) to social events because thats 'what other people do'. We stopped doing what 'other people do'. I remembered that I loved him before his diagnosis, and loved him still, it was our day to day living and the roles we played, that were different. I was the main driver of our practical lives. That didnt sit well with members of my family who saw the man as the bringer of bread. Only my elderly mum understood that Ian was a kind, deeply intelligent man who didnt get the rest of the world. She had lived with deafness all her life and had been ill

treated as a child. They empathised completely.

As an NT partner of and AS man, at the age of (then) 46, I was surrounded by people who didnt understand that he looked ok but acted 'odd'. Sisters told me to leave. I still had the thought of bolting, especially after a meltdown or another cold front when I came home from a bad day at work, as by this time Ian wasnt working and writing his novels, so we were following tradition and starving.

One day I read the Complete Asperger and it made me winder if I knew more about Ian's condition than he did. Because he didnt take it all in, because he was railing against the world, he just knew a bit about his AS from his diagnosis (mainly the bit about not being able to pick up social cues) and retreated into his hobbies and didnt attempt to integrate with us horrible NT's who had made it all wrong for him.

I started to tell him more about how I saw his traits and what I thought he might be feeling and how I might then adapt to those feelings. I said, can you smell strong smells all the time, do you hate noise - yes. He thought everyone did. This is why we walked into restaurants and he would soundlessly walk out again and I would turn around and he would be gone. The place had too many lights, noises and smells. But he didnt know that was called Sensory Processing Disorder. He said he hated people chewing food, hearing their chomps and it upset him. So we adapt. At home, music or TV is on while I eat a little further away. We dont eat out together very much but choose a place with musak and low lights. He will now take out the smely old trash but only when I bag it up and spray it first. I have had to give up the Gorgonzola...

The reading and adapting led me to work for Tourette Scotland and I now know that a lot of Aspergers people have a little of TS and that some TS have a bit of AS. (AS can have some tic elements: echolalia, OCD, ritualistic safety behaviours). Working for that charity allowed me to gain a lot of knowledge about the Spectrum - families who have OCD, SPD, ADHD, TS and AS within their diverse mix of family members. So having ADHD as part of AS isnt uncommon. Sometimes Ian's AS 'stimmies' are very much like 'tics'. With all that going on, no wonder you cant concentrate or hear things going on around you.

His concentration levels are low, he misses instructions and has to have things written down. He cant read or fill in forms very well, a bit of dysgraphia, too. So, how I speak, when I speak, is a formula that we have worked out together. And as such, he now approaches me for a conversation, having appreciated my efforts not to probe, yell, nag or interrupt. He has to say something when it is in his mind, or else he forgets.

Ian cannot take in huge amounts of what he thinkgs are non-essential data (non-essential to him, that is!) So I talk in paragraphs, and ask him when he would like to talk about something. If he isnt able to process information at any given time, he tells me so. I then wait until he is ready before launching into a diatribe about my rotten day. He and I agree that when he cant 'hear' me, he says so. This can be really hurtful, especially if you are desperate for a bit of comfort. However, the thing I remember is, he doesnt mean it. Its not deliberate. He cannot process some things as quickly as I would like. However, ask him about the Roman Invasion... and its two hours, minimum.

, you are doing so well. Having read up, you are right to find ways of understanding and adapting. I say 'adapting' because I personally have allowed myself to forget the word 'change'.

For me its about 'what can I/we do differently? How can I/we adapt?'. As I mentioned above, I was resentful, feeling that Ian got all the help and sympathy, and I have had to adapt myself in the way I live, speak, do things - and what roles I have in society. I forget about this until I meet other members of my family away from Ian, and relax a little. When I get back home, I am plunged back into being 'all' for Ian. So, as an NT partner, I do feel that its all about him, and then I remember: Its hard for him too. I can progress through the world with such ease, but Ian cannot. He is often jealous of my prowess socially, whilst I am jealous of him having a diagnosis of something that gets him out of jail free.

The key to our relationship is that we dont use the AS as an excuse but we use it to explain. I still feel that life would have been so much less burdensome at times if I had another partner, and NT. Then again, I love the man, not his condition. He has been a rotter at times, because underlying his AS he has the nurture element where he had abuse, and he can be stubborn and angry about all that. I have fallen into the Cassandra trap and I have been the carer/mother, I think now I am in the so what phase.

I dont allow myself to be subsumed by the AS diagnosis, nor do I resent that fact that I threw my hat into the ring. I could have left, and have indeed left the house angry ready to catch a passing bus. In all, the way I handled it was to give myself breaks - see other friends and family, reaffirm who I am, and then shape myself into a person who was not a victim but a helpmate of my partner.

Ian has adapted too. He asks me how I am, gives me hugs, listens to me when I give advice. This is because I asked him to do those things for me. With our relationship, it has been about learning how to communicate. Sulks, sarcasm and slamming doors doesnt cut it at all. Straight talking, 'I would like it if' and 'I find it difficult when you' types of talk. Thanking each other. Ian isnt ever going to be intuitive or perceptive. I have to explain how I feel, how I am. That becomes a nice habit, because I stopped feeling bad about talking about myself, and now appreciate myself better.

, sorry for the long post. But I do feel that your partner may be in the same thought pattern as I was so many years ago, where firstly the NT partner, rightly or wrongly, feels they are taking the brunt of the blithe AS behaviours, and then to cap it all, they are expected to keep on doing it, because its a real condition and cannot be helped.

Others may have a different view of my 'change' versus 'adapt' but in my case, we didnt try to fight the AS, but embrace it and find ways of living alongside it. Ian has times when he wants to go off for two hours and play train sets in his den. I then drink beer and listen to blues music. We arrange to meet up later, in our own house. He cant take the mickey by spending four hours on a computer game and then ask me what is for dinner. Oh no, not any more. I know that Ian has blood sugar problems and meltdowns, so I provide food regularly - but he has learned to cook it for himself.

Your partner may be feeling even more at a loss because there is the definitive answer to something she has been looking for - and its not a cure or a solution. There is a resolution, which is to see the future as an AS/NT couple and really appreciate each others' diversity. And try to explain that to others in the wider circle, who may not understand what the situation is going to look like, and may criticize you both.

I am sorry this is so long. NT's who live with AS are often talkative when they get the chance....:-)))

Judy B, Scotland

From Judy Barrow

To: Aspires Listserve <aspires-relationships > Sent: Thursday, 2 August 2012, 7:11Subject: I think my diagnosis just saved my relationship

Yesterday my psychiatrist confirmed my therapist's diagnosis of Asperger's. She also added a diagnosis of ADHD. Again, this makes sense in hindsight, but totally blew my mind at the time. I thought surely I'd had my allotment of paradigm shifting revelations. But I was wrong.

Tonight my partner told me that for the past few months, she'd been considering what she needed to do to live the best life she could, and that it could involve leaving me. She has a long list of things that were broken in our relationship, as she saw it. Turns out every item so far was, or was caused by, being autistic or ADHD.

My diagnosis came down right in the middle of this. This ramped the stress up even more for her and made things worse. I knew she was having difficulty with my diagnosis, but I didn't understand her bad reaction and distant behavior because she had been keeping all this to herself.

So I gave her space while I read up on autism, trying to understand how I work.

Tonight she told me things that had to change for the relationship to continue. If I hadn't gotten my diagnosis just over a month ago, if I hadn't read so many books on how to deal with it and learn and cope, this would have been the death knell of our relationship of 9 years.

Instead, I was able to deal with the situation. I was able to ask for the breaks I needed so I didn't get overly stressed and go mute. I took notes so my memory issues wouldn't mess everything up. Using everything I read, I was able to slowly, painfully, translate her needs and concerns into aspie-friendly language I understood, and clear steps I can take to meet them. All of her points were valid. Some of them, I had already started working on.

If I hadn't gotten this diagnosis, if I hadn't had a month of reading and therapy and insight, the happiest part of my life would be coming to an end. Instead, we're fixing it together. I cannot express how thankful I am to Fate, the Universe, or whatever powers that be. And to think the diagnosis started with what I thought was a goofy online quiz.

I know it's going to be hard work, but I think we can do it.

Now I'm just tired and emotionally wrung out. I just had to share this with someone before passing out.

Thanks,