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.

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13 thoughts on “Adult Autism

  1. I have a couple of friends with adult children with autism. It seems that, in this area, there are group homes that have lots of staff and management with experience with autistic adults. It seems that you could find someone locally with mental health nursing experience.
    Another close friend has an adult child with schizophrenia. I know that it is very stressful for her. Your experiences are probably a lot like hers. What your brother really needs is an advocate, and that will have to be you, even though he may not entirely appreciate it.

    Liked by 1 person

    • I’ve been thinking that a group home might be an option if we can find one. Unfortunately, we live in a rural area and I’m not sure if such a thing even exists here. I’m planning on calling his psychiatrist this week to discuss all of this with him and hope he can be of some assistance. And you’re right that I will have to be his advocate and he will definitely NOT appreciate it. Thanks for your input.

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  2. Hi – I’m actually a librarian in the sciences, so I’d be happy to do a little research, if that would help.

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    • I’ll take whatever help you can provide. Thanks.

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      • All right – I’ll get to it, and will recommend some resources as soon as possible!

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      • I haven’t forgotten about you – I’m going to list a few resources here, and I’ll also provide some PubMed citations if you think that might be helpful. PubMed will likely only provide you with abstracts, but you can use interlibrary loan at your public library to requests articles and and the books, too. If you have any questions, just let me know. And please tell me, if after looking at these results, if these aren’t exactly what you’re looking for – there’s certainly more out there, but as you said, there is much less available for adults, or caretakers of adults with autism.

        Books:

        Families of adults with autism : stories and advice… – informative, but is written in a more narrative style; meant to provide support – not very clinical.

        Autistic spectrum disorders : understanding the diagnosis and getting help – the 2nd edition is aimed at parents or adults who are newly diagnosed.

        Arctic spring : potential for growth in adults

        Film:

        Too sane for this world : a film about adult autism – a film that explores the lives of 12 adults with autism.

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    • Thank you SO much for all of the links you sent me. I can’t wait to delve into those, especially the book and the movie. I really appreciate you doing all of this work on my behalf. I can’t thank you enough.

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  3. Routine is often very important for someone with autism; there’s a big need to know what’s going to happen and to have plenty of advance warning too.

    Another thought for regular activities like tooth brushing, showering, and shaving… a photo board is often helpful. A morning chart with a picture of a toothbrush, hair brush and razor and an evening board with toothbrush, dental floss, and a shower for example. Another chart in the kitchen showing the times for testing his blood and picture of what medication to take.

    I’d definitely talk to the doctor and therapist again. Stress that this elderly woman’s helping for now but she can’t help forever.

    Good luck!

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    • Thanks secretmom2013 for those pointers. I have noticed that he gets very agitated when we change plans on him or disrupt his normal schedule. And, since he often gets overwhelmed, finding little ways to keep him organized has been really helpful. I did meet with both of his mental health workers yesterday and I think at least the therapist is starting to accept the autism idea. They both are telling me that they think he has early dementia, which he may have, but I have my doubts. So we’re getting him tested for that anyway and they’re also looking into some options in case his friend can’t continue to help him at some point. Thanks again!

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  4. Lesboi,

    I am wishing you and your brother the best. Getting help from adult mental health services can be frustrating. Thank you for stopping by my blog.
    Roberta

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