Yesterday morning, several people we knew stopped eating their Coco Pops when a disconcertingly familiar voice could be heard on Radio Four's 'Today' programme, talking about the late diagnosis of autism in children. It was my wife:
The interview was the result of a new campaign by the National Austic Society, which is trying to improve the appallingly long delays in diagnosing Autistic Spectrum Disorder (ASD). My wife was approached because our story was one of the worst examples that the NAS had come across.
I was quite shocked by this. I know several people with severely autistic children and nothing we have experienced can compare to the ordeal they have gone through. However, I was missing the point, which was about how long parents have to wait for their child's condition to be recognised.
In our son's case, a large part of his childhood has been lost thanks to the inexperience and prejudices of a few individuals in the Child and Adolescent Mental Health Services (CAHMS). In particular, I won't forget the following encounters:
* Being told that my son's rages (which included kicking a hole in the wall of his bedroom) and obsessive compulsive behaviour was simply the result of 'sibling rivalry' - a fit of pique at the arrival of his baby brother.
*The half-baked autism assessment where my son's understanding of metaphor would be tested with coloured cards: "I haven't got the actual cards and these are just black and white photocopies, but the object in this card's meant to be red..."
*The helpful advice that if my wife and I stopped worrying about our son and started relaxing and enjoying ourselves more, he'd also become less anxious. This was given at a time when my son's OCD rituals for each room in the house were so bad, he would spend hours on the upstairs landing, not knowing where to go.
*The person who said "I can tell just by looking that your son doesn't have autism."
*The individuals who recommended that we went on parenting courses or had family therapy, as our son's behaviour was clearly the result of something we were doing wrong.
In fairness to CAHMS, I know that they are underfunded and have to deal with some truly horrific cases, many of which have a higher priority than our own. I should also add that some of the professionals we met were truly wonderful, particularly during the last three years. I just wish that they had been more on the ball in the early years, for all our sakes.
If I suddenly found myself in a position of power, the first thing I would do would be to standardise the diagnostic criteria across the various health authorities, making the assessments more rigorous. I would also insist that all early years teachers had autism awareness training. Third, I would increase the CAHMS budget and recruit more nursing staff with autism training (I would rather have 25 nurses than 10 psychologists).
Spending more on mental health in the early years will, I've no doubt, save a fortune in the long term.
My wife found the interview mildly terrifying, but was delighted that autism expert Prof. Simon Baron-Cohen had agreed to take part. Our son is, thankfully, blissfully unaware that his story has now been heard by millions of people.