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CHOCOL8....and friends!....My autistic sons count -Charlotte Moore

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mrsforgetful Sun 09-May-04 10:57:23

My autistic sons count
Charlotte Moore
Monday May 13, 2002
The Guardian

Is autism on the increase? More than two-thirds of teachers think so, according to a National Autistic Society survey. The number of ASD (autistic spectrum disorder) pupils is three times higher in primary than secondary schools. In special schools, one child in three has an autism-related condition.

It is still argued that there is no real rise in incidence, that more widespread diagnosis wholly accounts for the growing numbers. It's certainly true that diagnosis is now far more frequent and accurate. The "triad of impairments" - of imagination, communication and social interaction - all have to be present for diagnosis, but it is now recognised that the impairment can be subtle or slight.

When my older son George was a baby, I only knew about classic, Kanner's syndrome autism. I thought all autistic people were aloof, shunned touch, were locked in their own worlds. As George's behaviour became odder, autism crossed my mind, but I dismissed the idea. My playful, smiley, interactive child, who walked at nine months and talked and sang at me - how could he be autistic? George drew people like a magnet: how aloof was that? And later, when Sam, his younger brother, gave cause for concern, I was slow to recognise that he, too, had autism. Two in one family? I'd never heard of such a thing. Now, I know of dozens of families with two, and a few with three or more.

Could my boys have escaped diagnosis in the past? Possibly. George might have been seen as disturbed or suffering from "infantile schizophrenia", a largely mythical condition once often applied to autists. Sam is more profoundly affected; his endless spinning and flapping, his obsession with washing machines (indeed, with laundry in all its aspects) would have provided hefty clues. Neither boy is wholly socially isolated, but every single thing they do is different, eccentric. They don't have Kanner's syndrome, but they are both autistic through and through.

But diagnosis or not, George and Sam would have been noticed. In the state primary school I attended, we sat at our desks tootling London's Burning on our recorders in classes of 40. An autistic child would not have slipped undetected by the eagle eye of Miss Everden. So where were those children? Special schools were in their infancy. Some must have been "put away" in institutions, but it hardly accounts for one in 100 children, which is today's estimate.

Common sense suggests there is a real increase, as well as underdiagnosis.

Nearly every week I get a call about some friend-of-a-friend who's worried about their child. What could account for this trend? I don't have anything useful to add to the MMR debate; I don't think it affected George and Sam, but found myself unable to give it to Jake, my non-autistic four-year-old. To the public MMR is the prime suspect but there are other theories: diet, pollution, allergies, ultrasound scanning... I just don't know. But I do believe there must be something.

Whatever the causes, the reality is that these children - who will turn into "these adults" - are woefully under-catered for. The government's policy on special needs is "inclusion in mainstream wherever possible". This assumes that those with special needs don't want to be stigmatised, enjoy feeling "normal", and want the same academic opportunities as everyone else. The premise is that children learn from each other; put an abnormal child with his peer group and some "normality" will rub off. But if an autistic child could learn normality this way he wouldn't be autistic. George and Sam wouldn't know a stigma if they tripped over one. They have not the smallest toe-hold in the com-petitive, interactive world of their peer group. They have no ambitions and they are indifferent to the opinion of teachers or pupils.

Some more able ASD children do benefit from the mainstream. I know one clever, obsessive boy who's doing so well that no one at his school knows there's anything "wrong". But I know far more cases where inclusion has been a disaster. Local authorities assess special needs placements in terms of IQ: it's much more useful to see autism as a social handicap. I know of several able autistic children who are not at school at all because they have failed and been traumatised by the failure, but are refused special school places because of a high IQ.

Autistic people seldom contribute to society in the Blairite sense. They're not good value. Most need expensive care all their lives, because even those with high intelligence lack common sense and basic life skills. We should give up the hopeless struggle of trying to fit them into an approximation of normality. Instead, we should encourage the special interests and qualities of the autistic child to help them enjoy being what they are, and what they always will be. Having an autistic child will always be a challenge; it does not need to be a tragedy.

Jimjams Sun 09-May-04 12:59:32

One in 100? Last week on radio 4 they gave the figure as in 63 (that may have been primary school age).

ROFL at the washing machines and laundry. DS1 now likes to have pegs stuck to him and "washing" hung from those pegs. He appeared with a pink bra top of mine dangling from him yesterday. DS2 of course has to copy everything his brother does so we have two boys covered in pegs.

Jimjams Sun 09-May-04 13:02:06

And when I think back to my childhood I can think of one boy at my primary school in my village who may have had ADD/ADHD. Now we have ds1, our old next door neighbours grandosn is HFA and my friend from 3 doors away son is being assessed (heading towards an AS dx I think). And thse are only the people I know. Better recognition my arse!

mrsforgetful Sun 09-May-04 17:01:10

thats what i think- one of my old neighbours had 1 aspergers son- she has now had 1 more and i have 2 ....in total we have 7 kids between us -of which 4 are autistic....where do THEY get the figures 1 in 67 from.

All that stops me blaming MMR is the fact that years before the MMR kids 'regressed ' at 3 or 4yrs (about MMR booster time) so i try to ignore the MMR debate- but something is amiss.

Jimjams Sun 09-May-04 18:58:34

well people like Adny Wakefiled etc reckon only about 10% of autism is caused by MMR, - there are probably many routes to autism. I suspect mercury/increase in use of antibiotics etc may have more to do with the increase in numbers. The numbers rocketed when the MMR was introduced, which conincided with the time that they moved the timing of the dtp's. Used to be spread over one year now given at 8,12 and 16 weeks.

Can't understand why they tell pregnant women not to eat too much tuna becuase of mercury pollution but are happy to inject 8 week old babies with thimerosil. Surely that's a contradiction?

Chocol8 Sun 09-May-04 19:16:59

Mrsforgetful - thank you...it is my very first thread with my name on and I was soooo excited. (You're not the only one who does!!! )

I agree with Jimjams and yourself that the numbers are alot higher. There are 2 more children with Autism in my ds' class. The TA takes care of them and none of them have been statemented (!)

I attend the local Autism group (who's numbers are just growing and growing) and found an old work colleague and a very old school friend who both have only sons who are autistic.

I am sure that in my ds' case, he does benefit from being in mainstream, but because he is AS and ADHD, I feel that the Ritalin possibly "softens" some of the more strange behaviour. For instance, he may normally shout something strange out (he is EXTREMELY loud), but because the Ritalin quietens him, he will say it in a normal voice and possibly not be heard in the melee of the classroom. I forgot (!!!!!) to give him his tablet on Thursday morning and had a call from his TA that he had had a terrible, terrible day. But that is another story and I will (hopefully) never to do that again!!!

Charlotte is a great writer, she writes simply and with huge experience.

The pegs thing made me chortle Jimjams, it conjured up a great picture in my head.

Thanks again Mrsforgetful. :0

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