Autism Awareness Month

Being the parent of someone who suffers from Autism I like to remind people that April is Autism Awareness month and share a bit about it so hopefully I can help allay some of the misunderstandings and misconceptions about it.

Until the 1990's very little was known about the Asperger Spectrum of Autism. Up until then people with Autism were presented as non-verbal, head banging, hand flapping, unable to connect with and basically unproductive.

Dr. Hans Asperger, who studied in Vienna, did a study of 4 boys and released a paper about his studies in 1944. He described these boys as having "autistic tendencies". The pattern included "a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest, and clumsy movements." Asperger called children with AS "little professors" because of their ability to talk about their favorite subject in great detail.

Even with this and further studies Asperger's Syndrome was not included as a diagnosis in North America until 1991.

My son Michael was born in 1979. We knew there was something wrong but the more we searched for answers the more "labels" he got. Hyperactive, ADHD, OCD, Borderline IQ and Borderline Psychotic (there's a scary one), learning disabled, defiant.

At age 15 we were asked to remove him from school because he had become suicidal. We admitted him to a ward at our local Children's Hospital - which wasn't easy - and it was there that we were told what he has is Asperger's Syndrome. 

He is 30  now. He's still at home. I have to remind him to shower, he eats only a specific diet of foods. He has a strict routine and gets very nervous if it is changed. For example he likes McDonalds. They are closed on Christmas Day. That's only one day out of the year and most of us wouldn't think anything of it but to Michael it's a great disturbance. He goes to McDonalds at 1pm every day. It is his routine. Christmas Day is difficult for him to get through because it is a change of routine.  Over the years he has come to accept that closure but it doesn't mean he likes it, he just finds it a bit easier to deal with.

I was in renting a movie the other day. The cashiers recognized my last name and said "Your son comes in every night at 10:45" They had to tell him to come earlier so now he comes at 10:30 cause they close at 11:00. I had to tell them he has Aspergers cause they had no idea. They thought he was just quiet. But see the pattern? Same time every day.

He drives a car. He's had his license for 10 years without any incidents. But he still has his Novice license. He won't take the test for a permanent license because having a stranger in the car is too stress producing for him.

I get embarrassed sometimes. To look at him, to talk to him you wouldn't think there wasn't anything wrong with him aside from him being very quiet and shy. But he will no longer agree to go to a barber and he doesn't like to shave. I also have to remind him to clip his fingernails. Some days I look at him and think "Oh my gosh, my son is Howard Hughes!!"

I want a cat or a dog in the worst way. He can't handle having one again. His cat died, his dog died. I did bring home another kitten one time and he sat up with it all night and cried. He has never gotten over the loss and never will and he can't stand the idea that if we got another pet it would die too. He can't focus on the positive part of having a pet.

He doesn't work. He's on disability. I make him go out one day a week to do something so he won't be completely cocooned in the house. He delivers a local paper one afternoon a week. Sometimes I feel like I'm spoiling him. I feel that I need to push him to go to a barber, shave off his beard, get a job. Then there are nights like last night.

His papers arrived for his route today. With them was a manilla envelope with about 8 sheets of paper in it. He came into the livingroom where I was sitting with a horrified look on his facing holding all these papers. He'd looked at them but could make no sense out of them at all. So I calmed him down and said we'd go through them together.

One was a sheet telling him what should be in the envelope. Well, that made no sense to him at all. Why give someone a sheet of paper listing what the other sheets of paper were?

Another was a schedule of what day he would be paid each month. He said "I already know when I'll be paid". In other words why are they telling me some thing I already know?

Another is a sheet asking for his name, etc. and his banking information so they can do a direct deposit. They already do a direct deposit. Why do they need him to fill out a form? This has an added problem because they want him to sign it. He doesn't like anyone seeing the way he writes his name. He forgot to dot the i once and it took us a week to get over that one.

Another is a sheet telling him he has to wear a safety vest while delivering papers. Did I mention he doesn't like change? He wears the same jacket and the same hat every day. He wears only black track pants and T-shirts with wolves on them. The thought of having to put a vest on top is very disconcerting. He's never been hit by a car and he's careful. Why does he need to wear a safety vest?

Then there are two pages of legal mumbo jumbo explaining an accident insurance policy that he has to have. It will cost him $2 a month. I don't even understand that language. I told him it wasn't important. I mean if I go into "If you lose a foot they will pay you $30,000" then he'll get worried about losing a foot and we'll end up in a conversation about if he lost a foot he'd rather die than be in a wheelchair. It would go on for about an hour.

So that is a bit about my life with a son with Asperger's Syndrome. He is the sweetest son anyone could ever have. He's as annoying as hell but he's caring, he's eager to help around the house, he's supportive, I think he's wonderful and I'm glad to have him as my son. He was adopted so I'm not saying that because mother's have to. We had no idea there was a problem when we adopted him at 10 days old. We had different dreams for him but I wouldn't change a thing.