My son is autistic, we were told he was autistic at his very first appointment with the paediatrician over eighteen months ago.
But then, last August, he went back to the same paediatrician who, alongside an educational psychologist completed the ADOS screen.
According to this screen my son scored a big fat zero, yes, that’s right, according to this screening tool, my son isn’t autistic.
Comments like “there is no echolalia” and “he demonstrated empathy” were made.
“Comments like ‘there is no echolalia’ and ‘he demonstrated empathy’ were made.”
This all happened in front of my son, so it was very hard to question them more about this so we left, absolutely reeling by this bombshell.
Should I be happy? Should I feel relieved? Well yes, I guess I should but that wasn’t how I felt.
Because, put quite simply, I felt that they were wrong.
His behaviour was put down to his dyspraxia, the dyspraxia diagnosis that had come a year before that had only been given because his “autism” was a barrier to his mild dyspraxia.
I was reeling, I rang my husband, who was equally shocked, and honestly angry. He couldn’t quite believe that the paediatrician, who doesn’t normally commit to a diagnosis prior to further testing, but did in our case, could have got it so wrong.
And of course it hadn’t been just the paediatrician who thought our boy was autistic, several experienced professionals had also believed this to be the right diagnosis.
A few days later my son started secondary school. I informed the SENCO of the diagnosis. To say he was shocked was an understatement but said that he should observe the first few weeks at school before we take any action.
Very quickly he felt that we should contact the paediatrician and ask for our boy to be reassessed citing that the SENCO had many concerns about our son.
Which is what I tried to do, but unfortunately the paediatrician had now left the hospital.
Many emails later, to no avail.
By this time, my son’s school life was deteriorating rapidly. He was being bullied and his anxiety was escalating.
Incidentally, my son had by now told me that he thought the doctor was wrong, he felt that he was autistic because he felt so different to his friends.
So we went to see our GP, I wanted it on record what was going on in Dominic’s life, the bullying, the anxiety, as we were considering home schooling.
“… my son had by now told me that he thought the doctor was wrong, he felt that he was autistic because he felt so different to his friends.”
The GP promised to chase up the paediatrician.
Just before Christmas I received a letter from the hospital.
The process of assessment has started again, clearly there is enough evidence to support this. My fear was that it would be dismissed because a diagnosis had already been given.
We did consider seeing a private psychologist but would we effectively be ‘buying a diagnosis’.
Apart from the cost, would this hold any weight, with education, with society?
So watch this space, I am anxious to see what happens next.
But at the end of the day, he is just my boy, his ‘quirks’ are part of him and he is loved and accepted by his family and friends.
He has support regardless of his diagnosis, so what does it mean to have a diagnosis?
In reality, not much. He accepts his differences and is happy to share this with others. So for him, a formal diagnosis means nothing.
For me, well it may be the difference between getting some funding (which will help towards his education costs) or not.
And (perhaps more importantly) it would give me proof that my son is not a naughty boy who I have parented badly. Why do I care? I really shouldn’t. At the grand old age of 45 I really need to get a grip, I know my boy is amazing and I know that I am a pretty decent parent.. not perfect, but who is.
“Ultimately that diagnosis, if and when it comes, will change nothing. It won’t change my son and it won’t change how he is parented and how he is treated by the people who love him.”
“It is just a label, something that the wider society needs to accept his differences, when in fact we should accept that we are all different and that is what makes the world an interesting place.”
Discussion about this post