1 in 100, a real life story

by Seana Smith on Tuesday, October 13th, 2009

I’m so interested in all these reports into research about the incidence of ASD and the roaring rise in diagnosis. It’s good to have Benison giving us a simple explanation of the science and I am sure she is right to note that many people are living with ASD and getting on pretty well.   I certainly know many dads who have diagnosed themselves with Aspergers and then had that diagnosis confirmed by professionals after their children have been diagnosed as being somewhere on the spectrum.

However, I’m also sure that there are many adults with ASD who have never been diagnosed and whose lives may be the worse for that, not to mention their families’ lives.   Here’s a real-life story to illustrate this.

A little 3-year old boy doesn’t really talk much, he just says the odd word.   He used to bang his head a lot when he was in a cot and he looks at his hands a lot.   He doesn’t really make friends with other children and relies on his big brother to talk for him.

I know what you’re thinking… this child is about to get an assessment for an ASD.  But no… read on…

The little boys mother says he starts to talk a bit more at four.  He doesn’t make real friends at school and has some learning issues.  He still relies on his big brother a lot.   He goes on to high school.  He is a wonderful artist and loves those lessons most of all, he wins prizes in competitions.   He still doesn’t socialise at all.  He loves everything to be organised and neat.

I know… you’re getting warm… he’s about to be diagnosed with Aspergers… But no… read on….

This young man is offered a place at art school.  He goes but only manages to stay six weeks.  He comes home and stays living with his mother.   He never gets a job, he never leaves home, he never has any friends of his own. He can’t leave the house alone, he is treated for anxiety with Valium.  After many years he manages to stop taking Valium.  He starts drinking instead.

When this man is in his 40’s a cousin’s young child is diagnosed at with an ASD.  This middle-aged man’s mother wonders, for the first time:  ”Could my son have Aspergers?”

Could he?  Could this man be one of the hidden hordes?  Could he be one of the many adults with an ASD who have never had the benefit of a diagnosis and so no proper treatment or understanding?

I’m not sure but I’d certainly like to know whether this young boy who banged his head and then grew into a man with no job, home of his own and no friends does have an ASD.  He’s my cousin you see, and mine is the son who did get that diagnosis aged three.  And maybe my son is just like my cousin, just forty years younger and a lot luckier.