How I Got Interested In Autism

I have had an interest in autism since I was in my 30's (for more than 30 years). It started when my older son acted in ways that no one could help me with. He was diagnosed with OCD when he was about 9 or so, but no one mentioned autism because at that time (1971) the definition of autism was extreme and it was not yet thought of as a spectrum. No one recognized it with him because he was high functioning. His talk was unusual, but he started at the normal age and could be understood. He had trouble with all his relationships (with occasional exceptions) including other kids but he was aware of the presence of others and responded, which at the time was not included in the autism definitions, and he learned easily in school. He wouldn't ever let me hold and cuddle him, even when he was a baby, and was diagnosed by one psychologist as never having gained the ability to bond. At least that helped me not take it personally.

Every time I carried him, even at ages two and three, I had to keep one arm behind his back or he would lurch backward and end up on the floor before I could catch him. Twice he threw himself backwards down a flight of stairs. Thinking back to the frustration of those times, it was very, very difficult for him and me both, since I had self esteem issues, too. He was my first child, and I needed him to love me. I did take him regularly to a pediatrician, both for regular checkups and for special problems. We went for the first time to counseling when he was 7. My husband and I started marital counseling, and the counselor met with the boys, too. I'll probably say more about my own psychological challenges later.

One of the signs that no one made anything of at the time was this: When he was three and became interested in looking at books for more than the pictures, his first excitement happened when he became able to read the numbers in the corner of each page. He came running to me from his bedroom, all wide-eyed and out of breath, and said "Mommy, mommy! Look!" He paged through the book as fast as he could and pointed to each page number. "The number on the page is the same as how many pages there are!" He was always more interested in the numbers than the story. When he was a teenager, he spent some time memorizing pi out to 2000 decimals, just for fun. He said that the numbers spoke to him and that they had a pattern or design that he felt but could not describe in words.

The first time that it occurred to me that he had qualities of autism was when he was 15. He told me that several years before that, the world began to close in on him, starting at the periphery and getting smaller and smaller. He said it had got so bad that he only had a small circle in the middle. When he wanted to see something to the left or right of that hole, he had to turn his whole body, not just his head. He said he had been terrified, but then the circle started to expand again until he could see normally. At the time, he had been unable to express that.

When he was growing up, he didn't make friends like his younger brother did. Every baby sitter I hired, with the exception of one older couple, quit in tears and refused to sit for him again. He thought everyone was stupid and enjoyed tricking people into thinking things that weren't true, without actually lying in words. Whatever work anyone did, he went behind them and undid it. When he left home at 18, he lost quite a few jobs before he settled in and started doing the things he needed to do to keep whatever job he had. I went through a lot of psychological struggle within myself while he was growing up because everyone - family and friends, his teachers, and even one counselor I went to - said that I needed to be more firm (ie, spank and spank harder) with him and let him know I was the boss not him - until I met our marriage counselor, who gave me better advice.

People told me that he would grow up to be a delinquent, unable to keep a job and always in trouble with the law, or else in some other institution because he couldn't fit into or follow the rules of society. I knew that a lot of what he did was just that he had a different vision of things - like when he took my stepfather's new garden hose and punched holes in it every five inches (he was 7 at the time) so that it would be a sprinkler hose.

So anyway, that's how my interest in autism started. There is much more to the story of course, but I'll jump to the present day. He is 50 now and has a stable job as an insurance claims adjuster. He has excelled in his work partly because he can easily memorize all the forms and remember the numbers of any claim. He has not married or had a family, and he doesn't stay in touch with me, but in my mind he has made a success of the unusual abilities he was given, he supports himself, and does valuable work. I don't know if adults still tell rebellious kids and teenagers that they will "never make it in the real world." Do they? I know I was told that as a teenager and people told me that about my rebellious son. But I did get through, and so did he. I believe that there are lots of possibilities open for how to get through, regardless of challenges.

This is only the beginning of the things I'd like to say, but if anyone has comments, please share, or if you've had similar experiences or concerns, or if you might recognize any of these things in yourself or others, or if you have light to share on the things I've talked about so far. Thanks

Hetty,

I enjoyed reading your post. It was full of hope, despite you and your son's challenges.

Thanks.

Thank you, Didgee Eeyou, and you are right, I do have hope for my life, and for the world, too. I see a lot of despair on this forum and around me in my life, but a lot of courage, too, and caring, and even sometimes wisdom.

Thank you also for sharing hope despite.....

I wasn't diagnosed and that was back in the 60's and only now are they calling it in the spectrum.

YOur post blew me away thank you for sharing.

Crew

This is how my interest in autism evolved. I live in a New York City apartment and two years ago a new family moved to the apartment above me. While noise is the biggest complaint in NYC I haven't personally been bothered by it. The day they were moving in I heard noises and figured they were moving stuff. But the noise continued and was strange: I thought they had a parrot perhaps. So I went upstairs to welcome them to the building. A woman answered the door and quickly said "we're getting carpets tomorrow." HUH? Well it turned out she had a severely autistic 21 year old son. I didn't really know what that meant until she brought him from his room. He screamed with a high pitch slamming his leg into the floor. It was horrible. He couldn't feed or dress himself, had 24/7 attendant.

Now this woman was extremely wealthy (I Googled her and found she'd sold a $4.8 million apartment on Fifth Avenue). From one of the attendants I learned she had been evicted from her last apartment. She could have lived in a house and she certainly knew he created a big problem in an apartment building. After going upstairs to complain daily (if the caretaker answered he was calmed down). I went to housing court to try to get my landlord to add a false ceiling to my apartment for noise control. They didn't have to. Sometimes I was woken at 5 a.m. by his terrible screaming. Someone in the building said he could hear the kid screaming across the street. It was one of the very worse experiences of my life. I had to start taking tranquilizers. I called the police to report "screaming in the building" and after the police came, he calmed down.

Other people complained and, after seven months and four days, the family was evicted. I read an enormous amount about autistic adults and know there are few programs for them. He had a sister who smoked pot all day and his mother. No one else. My resentment and anger wasn't at the son, it was at his mother who knew he couldn't live in an apartment and, despite being wealthy, didn't buy a house or try to live on the ground floor.