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.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, August 30, 2015
Sunday, July 12, 2015
The Mild West
I have just returned from the first family holiday we've had in three years. It lasted for two days, which was quite enough for everyone. It seems extraordinary that my childhood holidays were always a fortnight long.
One of my earliest memories is of a disastrous stay in rural Wales, where my parents had booked bed and breakfast on a remote farm. It rained for the entire two weeks and the holiday felt more like penal servitude.
The farm's owners rarely spoke English and regarded our presence as a necessary evil, although when the weather was particularly bad, we were once invited to watch an episode of 'The Virginian' with them.
We never went back. The following year, we began the first of many successful holidays at a caravan site in Devon, where I befriended two girls and their younger brother. We got along so well, our parents decided to synchronise their holidays. I have many happy memories of Enid Blyton-style adventures involving deserted cottages, poachers and secret dens.
When the holiday began, the two weeks ahead felt like an eternity and we gladly turned our backs on the dreary, monochrome existence of our real lives. Local landmarks became old friends: a telephone box, a garage with a blue door, a wonky road sign and prehistoric tumulus in the distance. As we approached the caravan site after a day out, my mother would say "We're home."
The long summer holiday was a gift I wanted to give to my children. It never occured to me that the prospect of spending two weeks in an idyllic setting, exploring the countryside and beaches, would be anyone's idea of hell. However, children on the autistic spectrum hate a break in their routine.
When I broached the subject of a holiday with my son, I felt as if I was brokering a deal as challenging as the Greek debt repayment. In the end, we agreed that two nights would be acceptable as long as the hotel had wifi and wasn't further than 120 miles away.
It was a plus point that we were returning to Dorset, as my son would know what to expect. I didn't mention that the hotel was 800-years-old, as that would probably be a bad thing in his book.
Golden Cap, the second highest point on the south coast of England
Dorset was as pretty as I remembered it, but many of the traditional family-run shops have been replaced with chi chi cafes, artisan bakeries and places selling rather poorly-executed paintings. It looks as if the London diaspora has reached Dorset and the rhotic r has been replaced by the 'flat white'.
If I had my way, I'd reintroduce smocks and pitchforks, with penalties for anyone who didn't say their rrrs and oiz properly.
Lyme Regis harbour
Overall, the holiday was a success. There were a few wobbles and I felt sorry for my younger son when a fossiling trip came to an abrupt end, but most of the time we managed to achieve something that faintly resembled a normal family holiday. When we returned home, our older son said that he would like to do it again.
P.S. I've become a big fan of Instagram recently, so here are a few pictures from the trip:
Subscribe to:
Posts (Atom)