Autism Diagnosis. Our life changing journey.
Our son, whose experiences Dylan’s, My Story About Autism is based on, was diagnosed when he was 6 when wait times were shorter. However, I can remember the anxiety and confusion that surrounded this process, and how it changed our lives.
When our son was about 4 our paediatrician raised the possibility of his being autistic. I thought she was crazy, and when she said that she didn’t think it was helpful for our child to have a label we both agreed, and cheerfully scooped our child up and went home. Two years later a different paediatrician was more positive about the diagnostic process. We thought again and decided that at least it would rule autism out.
You see, our son is adopted, and social workers had been keen to put his differences and challenges down to poor attachment and trauma. We had been following their advice and strategies. However, our son was still not sleeping, finding changes to his routine challenging and not managing social groups or interactions well. As far as we were concerned he couldn’t be autistic though. He gave us eye contact, he loved his food, he didn’t line his toys up and he was cuddly. Everyone knows that autistic children can’t do these things – I thought!
The autism assessment itself seemed extremely random to me, and unlikely to bear any conclusive results. Watching our child play and then asking him some questions which he either ignored or was unable to answer or answer accurately seemed, should I say it, a bit of a stab in the dark. She did ask us lots of questions too, and some of these raised issues or behaviour which started to make me less sure. Some things that she said really resonated with our experience, such as does he like to watch the same TV programmes repeatedly? Well yes, there was the constant SpongeBob SquarePants viewing… But by the time we went for the results I had convinced myself otherwise.
When she gave us her diagnosis: high functioning Asperger’s syndrome, I was confused again. What was Asperger’s syndrome and how did this relate to autism? We left the meeting in a bit of a daze. I started to cry. Hasn’t he got enough to deal with, being adopted, I said. My husband was much more philosophical, at least we know now what we’re dealing with, he said. And now we can get him the help he needs.
In the car I googled Asperger’s syndrome and was gobsmacked by what I saw. How could I have missed this? Our son was ticking all the descriptors: pedantic monotone speech, special interests, not being able to understand jokes or sarcasm, standing too close to others…
Still, I comforted myself, Asperger’s Syndrome is high functioning autism. He will not struggle as much as some autistic children. (Of course I was wrong, but it took me a while to work this one out. That was for another day). So there we were, at the start of our journey. My husband was ready to get help, I was full of grief, and guilt that I hadn’t known our son was autistic. And then of course we needed to explain the diagnosis to our son – and that’s how “My Story About Autism, by Dylan,” began.