I was going to write another post for this week – I have so much to say! But this question came up on the site “Quora,” and I thought it fit well with my blog.
I was diagnosed at 38. I was VERY quiet for all of my childhood, and didn’t participate in much. I was very much inside my head, was quite ‘picky’ when it came to food – to the point where I refused to eat most typical foods, saying I was “allergic.” (Many foods made my stomach hurt, if they even made it that far. The texture or taste of many others made me gag and throw up a bit. I WAS allergic to the powdered cheese sauce that came with pasta dishes – it put me in the hospital at 7 for a week, and 1/4 tsp of kraft dinner at 23 (which was the next time I ate it) made me unable to stand or see, and caused vomiting for 4 days. I thought until then it was the pasta, and still can’t eat any pasta to this day.
Aside from the above, I talked, walked, etc. on time. I had some trouble with school, but that was because I didn’t/couldn’t participate. I had selective mutism, but those around me just thought I was painfully shy. Lots of things upset me – I have some pretty severe sensory issues- but those around me didn’t understand, and just thought I was whiny.
My son – diagnosed at nearly 20 years old – he wailed for his first 6 months. He didn’t just cry, he would wake up with the largest pout I have ever seen – and if I wasn’t looking at him the moment he was waking up, and huge wail would come. People could hear it (loud!) at the other end of our L-shaped apartment building.
He screamed at EVERY bath no matter how careful I was. He hated water. He was 7 before he stopped crying at baths/showers, and only then with the use of goggles (he wouldn’t wear them before that.)
By 18 months, he hated getting dirty. If he spilled a drop of food on himself, he would scream. Since he hated baths also, I would try and wipe him up with a cloth. He started refusing diapers, too, and was fully potty trained day and night by 20 months.
He was silent for his second 6 months, but by 18 months had a 1,000 word vocabulary (I wrote the words down, kept on the fridge, as he said them) and was speaking in full sentences.
In play, he would get me involved in doing something, and then move to something else (this was by a year.) He preferred to play alone. Yet he loved to be held, carried, hugged (but only by very few people that he allowed.) He hated to be separated from me and would cry pathetically (“Don’t let me go, Mommy!” – it would break my heart.)
At age 2, after his paternal grandmother said his father had liked puzzles at that age, I bought a 48 piece (Dudley the Dragon) puzzle. I opened it and went to do the dishes. When I came back, he had it done. We were the only people in the apartment – he had no help. He loved puzzles, and when he started daycare and they told him he was too young for the bigger puzzles, he would come home and do them – then flip the pieces upside down and do it again upside down. One after another as if his life depended on it.
He preferred educational games made for much older children to any other activity. I would have to drag him away from them to go to the park, playgroups, children’s museum, etc.
Just after his 3rd birthday (at which time I got him a Teach Me Phonics set since he was angry at me that he didn’t know how to read yet) we got our first computer. He would teach his preschool teachers how to change the display, change the colours (at that time each game required different things) and turn the computer off properly so it wouldn’t break. He is still really good with computers, as if he were born knowing.
At daycare, he would spend almost all of his time alone on the computer – not wanting to play with the other kids. He would, however, take my circle activities that I had prepared for my Early Childhood Education practicum (songs, stories, etc.) and lead the “Circles” with the children. His teachers didn’t need to do them while he was there. I always had to prepare two, knowing he would be taking one.
Until just after his 4th birthday, we were out 12 hours a day as I was in school and placement, and we had to take buses everywhere. Once we stopped, he taught himself to read. He went from basic readers to Robert Munsch books to novels in just a few weeks. He could even read upside down as I was running a daycare at the time, and he wanted to read to the children while showing them the pictures.
For the school years he was well advanced. At the end of Kindergarten, he took a diagnostic test which placed him in 4th grade for reading comprehension, science, and social studies, and half way through 2nd grade for Math. In third grade he tested in the 99th percentile on his Canadian Achievement test. Yet he had NO motivation for formal schoolwork (even though I had to tear him away from similar materials before he had to do them.)
He refused to go to school, and was homeschooled except for 2 weeks in Kindergarten. We were registered, and he was supposed to do a conference call with his ‘class’ every week, but would lock himself in his room, crying, until it was too late to talk. He still refuses phone calls, and won’t even email people.
For social skills, he never did move past parallel play (I ran a daycare, then did foster care – there were always other children around until he was about 15 years old.) Meaning he would play next to other children, allow them to watch him on the computer, allow them to watch him make puzzles – but he wouldn’t play with the children. He didn’t like sports or other group games (I never did either) though I kept putting him in them.
He hated repetition, so learned math (with many, many tears) by only doing one problem in each section, then taking the test – he still ended up with all A’s.
He didn’t graduate. He finished all of his required courses except Grad Transitions (he finished the work for this, but it required an interview at the end, which he refused.) He wouldn’t do the electives, saying there was no point – yet outside of school, taught himself to be nearly fluent in German (they tried to make a course around this and provide him credits, but while he had to do it, he wouldn’t.)
He also taught himself computer programming languages (learning to hack games to do funny things – like cause someone to teleport to an unknown location, or in lego games, cause their heads to shoot off.)
He is very smart, with NO motivation. Peer pressure doesn’t work. He doesn’t care what other people are doing, or what other people want from him – yet he is VERY polite. When it is something he chooses to do, with no outside influence, he spends most of his time learning and doing. He recently researched, ordered the parts, and built his own gaming computer. He is very good at this stuff.
I started to think he might be Autistic at 6 months of age when he suddenly became so silent (he was watching and learning.) That thought never quite went away – but since I was okay with homeschooling, and he wanted to be home, I never had him tested. The extreme focus, strong sensory issues (to water, having his teeth brushed, being dirty, etc.) and social challenges were all key signs that he was Autistic.
I had (again) some real struggles leading up to the year I was 38 at which time I went forward and got my diagnosis. My son was diagnosed 8 months later.
Just a few years prior to my diagnosis, one of the daycare children I had cared for – the only one of about 65 who was similar to myself as a child – had been diagnosed with Aspergers. Reading more about it I was convinced more than ever before that this was also true of me – though I had been quite sure for a long time before. That is what gave me the courage to seek a diagnosis of my own. One other child that I cared for was also diagnosed as a teenager with autism – but he also had bi-polar, and was very different from myself and my son.