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