Adult Autism

This is going to be a very different post coming from me.  Usually I duke it out on here about my gender, but this post is about my brother.  He’s thirteen years older (that makes him 65) than me which means that I missed out on his formative years.  To say he’s always been a bit of a mystery to me is an understatement.  He baffles me.  Constantly.  I’ve never understood him.  And here’s the kicker.  He lived with my mother “taking care of her” until she died and never dated or had friends or even thought about getting married.  What I’m starting to think is that she was the one taking care of him.  She died seventeen years ago.  Since then he has basically fallen apart mentally as well as physically.   He has severe diabetes and depression and hasn’t been able to work for the past six years.  Miraculously, we were able to get him on disability so that he would be able to stay in his home and not live on the streets as he had told me he dreamed of doing several years ago.  That’s a strange dream, I think, but everything about him is strange in my opinion.  Since then he’s become a hoarder and rarely takes baths or changes his clothes.  He’s socially very very awkward and doesn’t communicate well or much at all.  When I ask him how he is or what he’s been doing he usually says “fine” and “nothing”.  That is a conversation with him.

I’ve been going to his doctor’s appointments for the past year so that I at least know what’s going on with that aspect of his life since he never communicates anything with me until it’s too late to help.  I once found out that his car had broken down on his way home from my house late at night two weeks ago and he had walked home, had the car towed to a shop and told that it was unfixable.  I found this out by him calling to tell me he needs a new car with no other explanation.  I might also add that he seemed mad at me because of it for some reason.  So, when he suddenly told me that his kidneys were not functioning well anymore I realized I needed to be more involved in his life.

On the surface, for many years, he seemed like a normal person.  But now it’s becoming painfully evident that there is something terribly wrong with him and I suspect that there always has been.  I suspect that my mother protected him and covered for him all of those years.  Without her, he is lost and doesn’t know what to do with himself.  He can sit in a chair all day and stare at the wall, take naps in the chair, and occasionally smoke his pipe and that is his day.  He can do this every day.

Recently he stayed with me for a week because his vision had gotten so blurry he couldn’t see to take his insulin shots.  It was a horrible week but I learned a lot about him.  Finally, he improved and he demanded to be released to go home.  Reluctantly and yet, relieved, I let him go.  The next time I saw him he told me he was getting a room mate.  An old neighbor lady needed a place to stay and he needed help with his meds.  It was a perfect fix for both of them.  She’s shared a lot with me about what he does all day.  The most alarming thing she told me is that he occasionally shakes his hands vigorously or scratches at himself and makes animal noises..oinking like a pig or snorting sounds and seems to not be aware of doing it.  This got me really curious so I looked it up and it’s called “stimming”.  People with Asperger’s and often Autism tend to do it to deflect stress.  I know he’s feeling stressed because she has made him throw out all of his stuff and clean his house.  For a hoarder this is extremely stressful.

So now I’m trying to learn about the Autism spectrum, Aspergers, etc and all I can find is about what to do for children with these disorders.  I’ve found nothing at all about dealing with adults with autism.  He does have a psychiatrist and a therapist but neither of them have been helpful at all.  In fact, they think he’s doing great because he’s cleaned his house out and has a friend now.  No, he’s not ok.  She cleaned the house and demands that he keep himself at least marginally presentable.  He also lies to his doctors (and me), but that’s another whole post in itself.

I’m writing this post with the hope that someone out there will see it and give me some advice.  I don’t know what to do for him.  I feel like his days of being able to live alone are over and it’s just a matter of time before I have to make a critical decision about his future living arrangements and I could really use some help.