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.
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14 comments:
And let's not forget that John Humphries described her as 'wonderful' on air. I know that's not the point, but still.
Your wife managed not to sound terrified, which was pretty clever. That Les Murray poem I sent you the link to about his autistic son was written years and years ago and I'd thought the whole 'refrigerator parents' idea had been completely debunked long before this. Underfunding be damned - the lack of insight, compassion, ordinary humanity you were shown by people supposed to be in a caring profession is breathtaking. Did they honestly think you enjoyed dragging your son around to appointments, that it was some kind of attention seeking behaviour?
My daughter is now an adult with different problems from your son. I learnt to be hard as nails when dealing with the school system and some of the medicos. It always hurt the contempt shown for me and the lack of apology citing budget constrants. The best advice I ever recived was from her primary school headteacher who said it was my job to be a good parent for her and not to accept the excuses given by a variety of peoople for failing her. Their excuses were not my problem.
My primary school was small, 50 pupils had 3 teachers, we were divided by age, and had a collection of art, music, re, and pe teachers as well as speech therapists and other specialists on a part time basis. It wasn't a perfect school but when I was there it worked pretty well. Looking back I realise how lucky we were to be somewhere that could, and did, accommodate children with a range of needs. Better equipping primary schools would be money well spent.
Zoe - I'm glad my wife didn't sound terrified. It's odd hearing her radio voice, as in real life my wife sounds quite different and is far more expressive. We joked about not saying 'robust' or sounding like Lady Di, which she used to in her youth.
Re: CAHMS, the lack of understanding was a shock. We naively believed that we would be meeting experts who would be both competent and sympathetic, rather than ignorant and judgemental. Why would anyone want their child diagnosed with a mental health problem, unless they had already explored every other option?
Lorna - That was good advice, and if the budget can't meet the needs of every individual, then it should be increased. The economy won't collapse under the strain.
Desperate Reader - I think that many schools are just too big and whilst they offer fantastic educational opportunities, the environment is far too stressful and alienating for many children. Some schools have an autism unit, but it must be quite difficult to be separated in this way.
The schools just aren't trained to spot these things and we live in a country where those in charge won't take issues like this seriously. On a more minor note, my youngest (20) has just (*just* at the age of 20!) been diagnosed as dyslexic - why the hell wasn't it picked up while she was at school from the ages of 4-18?? So frustrating - I hope you'll get the support you need now.
kaggsysbookishramblings
Kaggsy - There's a desperate need for more early years training, as the decling mortality of premature babies will apparently mean more children with special needs.
Laura - Thanks for your comment. I'm afraid that I had to delete it, as you mentioned my wife by name and she is keen to remain anonymous. Sorry.
There is nothing more irritating than Authority's belief that the average parents don't know anything about their child .
"the first thing I would do would be to standardise the diagnostic criteria across the various health authorities" - goodness, yes, what a brilliant idea - I wonder why they never thought of that?
Presumably the subtext is "if we diagnose this child with autism we will have to pay"?
I'm very sorry to hear of your struggles with authority, and hope things improve.
You might like to have a look at this blog (written by one of my ex-pupils):
https://autistichermit.wordpress.com/2015/08/26/an-englishman-in-aspieland-or-why-silence-isnt-always-golden/
Smitonius - I think many professionals become jaded and feel as overwhelmed by the system as their patients. But it was frustrating to not be trusted.
Lucy - Money has a lot to do with it. Once a child is diagnosed with a condition, the local authority has to find the funding for an education if mainstream schools can't provide it. Most applications for a Statement of Special Needs are turned down.
David - Thanks. It's an interesting read - very articulate and thought provoking. It's good to have an insider's perspective on the condition.
How determined you had to be. I know something about being fobbed off (in different circumstances) by the medical profession both state and privately funded and still do not think we had the help that should have been available. It all gets even more complicated once a child becomes an adult. I am glad you got to some effective help before you were sidelined by the authorities.
Lucille - It was a real battle and I'm sure that many people give up, to the relief of many professionals. My wife had the advantage of being well-educated and exceptionally tenacious, but even she often felt overwhelmed by the system.The turning point wasn't just a diagnosis, but also the failure of the local education authority to accommodate our son's needs. Towards the end, they tried very hard and I can't fault the dedicated professionals we dealt with, but nothing changed. I'd already given up any hope of our son getting a GCSE and was resigned to supporting an unemployable, unqualified person for the rest of my life.
But all my son needed was the right school and a lot of support. It's early days, but already our expectations have risen from one to six GCSEs and my son feels positive about the future for the first time in years.
I can't tell you how pleased I am to hear this.
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