Fringe Benefits - But What About Core Services?
Today, I spent some time filling in forms to get some additional services for my son Joe, who has Asperger's Syndrome.
Through Hackney Family Back-Up, we can get various services, including a monthly Saturday afternoon club for kids with "challenging behaviour".
Sign him up for 'The Key' - Hackney's register for kids with disabilities and special needs - and he can get a leisure card giving him free access to swimming and other sports and leisure activities. And here's one that could prove very valuable - autism-friendly showings of kids' films at a cinema in Stratford. The volume is lower than in regular screenings (autistic kids often don't like loud noise), and if they want to get up, make noise and run around, no-one is going to tell them off. Which is good news for Joe, whose last visit to a cinema (pre-diagnosis) ended rather abruptly less than half way through the film.
All this is very welcome and helpful - as is the prospect of his school waiving the fees for Joe's attendance at After School Club, which he loves and which helps a great deal with his developing social skills.
But the actual core healthcare services that he needs are not so readily forthcoming. Hackney schools only get the attention of speech and language therapists for half of each term. The borough's Learning Trust employs far fewer autism specialists than it needs for around 40,000 school-aged kids (the last I heard, it was just four). And despite being prioritised at the time of his diagnosis in November, Joe will have to wait until April for Child Psychology. Underfunding of the Primary Care Trust means that there is no Child Psychology for under-11s in Hackney until April. Yes, you read that right.
This is particularly infuriating as Joe has proved himself very responsive when he gets attention and care that suits his special needs. He's a lovely young lad who just needs a bit of extra help and for society to recognise that not everyone sees the world in the same way.
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Aspergers Syndrome
I am a 26 year old person with Aspergers Syndrome. Health and education are the two areas identified as causing the most problems for people on the autistic spectrum. The average age for diagnosing Aspergers has dropped now to about eight or nine, but the services aren't in place.
Unfortunately there's a lot of diagnose and forget about or other errors by healthcare (especially at transition times when they become 16,19 etc). However things are getting (very slowly) better.
The local LEA wouldn't need autism specialists as you put it if the actual staff dealing with these kids on a day to day basis were better trained. Child Psychology has always been that way everywhere with too few psychologists employed for the workload (partly because they're expensive).
Don't worry I'm sure with or without support he'll turn out ok...
John Brace
Liberal Democrat Candidate
Bidston & St. James ward
2007 Wirral Council local elections.
Its very Frustrating
Janine, I sympthasise with you heartily. Almost from birth we knew our oldest son Karl was "special". I don't mean in the way that every parent thinks their kids are special. He never crawled, but went straight to walking. He wouldn't let you try to show him anything, and had to do it for himself. He read from an extraordinarily young ago - I remember once taking him to the Baths when he was only just 4. One of the old blokes I knew there spoke to him, and Karl said he could spell. "What can you spell?" the chap asked, "Czechoslovakia," replied karl, and proceeded to do so along with several other big words. At around the same age he knew every sign and marking in the Highway Code, and could tell any car make and model just from hearing the engine sound in the street.
At the time I was lecturing part time and spent most of the time with him. I used to take him to the Mother and Toddlers group at the Community Centre, and noticed that he would not play with other kids. At around the same time he had to go into hospital with a bad astham attack, and after he came out we couldn't get him to go to bed. We used to stay awake with him until 3 or 4 in the morning reading to him, and it was at this time that I noticed that he had the ability to just fill in word for word bits of any story he' heard before if at some point you stopped reading.
He had always been hyperactive,a nd that got worse. At Primary School one of his teachers suggested that he perhaps should be seen by a child psychologist, but never said why. We had never heard of Autism. It was only when I saw Rain Man when Karl was about 10 that I twigged. By this time his behaviour had become very difficult to cope with. Not because he was badly behaved as such - at school he never was seen by a child psychologist because he was always extremely well behaved, and always intellectually way ahead of anyone else. But he could not mix with other kids, when he had friends they soon did something that did not fit his picture of the world and caused him to fly into a rage. In the house he could not cope with any display of emotion, even the sound of a baby crying on the TV, and he would be prone more and more to coming out with extreme outbursts and so on.
I was talking to a friend of mine a few weeks ago who used to be a revolutionary and was a teacher. He knew Karl as a child as we used to be Councillors int he same ward. He said that he had known then that Karl suffered with Aspergers, but said he'd never said anything because often people don't want to know there is something wrong with their kids. Actually, I wish someone then had told me, and we could have had some support for the last 20 odd years.
You are absolutely right about Primary Care. I have a number of friends that work in Healthcare including a GP, and I have spoken to many people involved during the time I was Vivce Chair of Health Scrutiny for hte County Council. The problem is that although everyone knows that prevention is better than cure, and that pound for pound money spent in Primary Care is more effective, the Health Service bureaucracy is concentrated in Secondary Care, in the hospital complexes. For politicians too there is a symbiotic relationship, because nobody really sees what happens in primary Care, its only when you actually need it, and it isn't there that you notice. But everyone sees a nice big sexy new hospital being built. So like with every other bureuacracy money flows to where the power is.
As John Brace says, there are lots of people out there with some autistic spectrum illness, many of them unaware of it. Karl has managed to go through University, and even got himself to the US to study for 5 months, including getting himself from Detroit to Ohio in the middle of the night. He has managed to work for the last few years, but because of his problem with relating to other people he often ends up with someone saying something that upsets him, and then he can't cope, and has to move on. That's one reason he wanted to become a train driver because he knows absolutely everything about the railways, and railway engineering - typical of autistic savants the house is still full of drawing of gantries, and wiring diagrams he did from the age of about 6 - and mostly because he could spend most of the day without talking to anyone.
Arthur Bough