After learning about our son’s autistic disorder in the spring of 2008, we did not immediately tell our son. For one thing, we were not ready; we needed time to get over the shock of the diagnosis and to learn about his disorder. After several months though, I felt that our 9 year-old son ought to be told. By then I had also started to get fed up about the lack of openess in our house and the snatched private conversations with my husband. I wanted to be able to talk openly about the autistic spectrum in the same way that we talk about my short-sightedness or my husband’s dyslexia. I know these conditions cannot be compared to the complexity of the autistic spectrum but the point I make is that I didn’t want autism to be something that is whispered about behind my son’s back. I fathomed that if we felt unable to talk freely about the autistic spectrum in our own home then how could my family ever learn about my son’s difficulties and strengths. How could they ever learn about the autistic spectrum? Surely inclusion and equality start in the home. Of course the decision to tell my son was never just based on my personal quest for equality; I also had to consider my son’s needs. And I was worried. I was worried that my son would not understand what the autistic spectrum meant and I was equally troubled by the possibility that if I didn’t tell him, he might, one day, resent us for withholding information that could help him.
So one evening, when everything was calm, I settled by his bedside and with the use of a simple book I started to discuss his autistic disorder. Initially things went well; he seemed to identify with the pictures of the boy in the book but my attempt to read and explain the accompanying words fell on flat ears. He simply was not interested so I abandoned it. Over the following few months I had further attempts to discuss it, but again he refused to engage. I therefore changed my approach and decided that I would discuss my son’s autistic disorder as and when issues arose and when my son was in a receptive mood, something that I still do today. And hopefully, one day, my son will be comfortable with the knowledge that he is autistic.
You may also be interested to read:
Part 5 – Adjusting to a diagnosis
Part 4 – Getting a diagnosis
Part 3 – “I’m dumb” – the issue of self-esteem
Part 2 – on the road to a diagnosis
Part 1 – school, special educational needs and my son
2003 – first school year – difficulties emerge