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Severe autism - letter in Observer

14 replies

yurt1 · 25/03/2008 10:11

From yesterday's letter page:

Let me tell you about my autism

From a former roof-walking, run-into-traffic, uncommunicative autistic: please don't underestimate the understanding, intelligence, or ungerminated abilities of David, the marvellous boy in Christopher Stevens's article, 'How our son taught us the secret songs of autism,' (last week) or of children like him. A number of speaking and non-speaking adults on the autism spectrum (some of whom developed spoken or written language in their teens - like me - or later in life) are beginning to tell their stories and explain the behaviours that were so puzzling to their parents. Some are commenting on therapies and educational approaches. We are a largely untapped resource not only for parents, but also for medical professionals, researchers, teachers, and public policy-makers.

When I ventured onto a roof or ran twirling into traffic after a balloon, I could imagine the danger, but the obsessive impulse that guided my actions was so strong that it made me feel invincible. In my late teens, it was discovered that I had sub-clinical epileptic seizures that took various forms of anti-social behaviour and also gave me the feeling of all-powerful solipsism I had felt as a child.

We autistics do have a sense of what other people think and feel, but most of us are dealing with severe and all-invasive sensory overload. In this state, it is profoundly difficult to interact with others; think of how socially impaired you neurotypicals are when you are sick, drunk, or in pain. Imagine how you would appear to others if this were a constant and all you had known from birth, if you were mute or could only sing your discomfort or comfort.

There is more to David - to all of us Auties and Aspies - than meets the eye. I encourage those of us who are able to explain our atypical experiences to write or speak publicly to foster greater understanding about our condition.
Nick Pentzell
Lansdowne, PA, US

OP posts:
edam · 25/03/2008 10:20

Wow. Very moving. And impressive.

ancientmiddleagedmum · 25/03/2008 16:11

Yes I read that too Yurt, and was particularly taken by his description of ASD sensory overload being like an NF person who's drunk - and how when you feel like that, with the room spinning, the last thing you want to do is have a chat. VERY interesting !

sphil · 25/03/2008 19:27

What a great letter - makes me feel much better after a totally s**t day with the school (which I can't talk about on here unfortunately). I've just finished Christopher Stevens' book - enjoyed it very much (though not his summary dismissal of ABA in one paragraph!!)

yurt1 · 25/03/2008 20:17

sphil. I was going to email you soon to bore you about a new programme we're doing, but I'm waiting to hear if ds1 has been accepted first.

Hope everything's OK. Give your lovely boy a kiss from me.

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mymatemax · 25/03/2008 20:34

The part that strikes a cord with me is the obsessive impulse being so strong it makes him feel invincible...
That could be ds2, on one hand he is so sensory sensitive he is scared of everything BUT if a compulsion/obsession kicks in all sense of danger is lost.
Also remove all sensory stimuli & he will speak, even bordering on holding a conversation, but throw in the sensory overload & he reverts to a 2 yr old.
I think had his language skills not developed he would be perceived as far more severely autistic (nothing we did, we were just lucky).
It is only with increased understanding determined parents, fighting for their children to receive treatment & support rather than be written off as they may of been a generation or 2 ago that people with severe autism learn to express themselves.

yurt1 · 25/03/2008 20:37

Yes snap mymate. Ds1's compulsions are the most disabling part of his condition. They get in the way of everything. From spelling a word, to eating his tea, to going to bed, to walking down the street. They're bloody awful. Remove his compulsions and even without speech he would function at a massively higher level.

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Twiglett · 25/03/2008 20:41

wow, what an interesting letter.

I am so saddened that you feel you have to censor yourselves on MN. I understand it but am so very saddened.

sphil · 25/03/2008 23:20

Oh Twiglet - not being able to talk about the school thing has nothing to do with MN per se (I'm a right old blabber mouth usually) but just that I'd be in deep trouble if anyone from school picked up on it. Serves me right for choosing such an obvious nickname! I would dearly love to have a HUGE rant about it, because everyone on here would be sympathetic and give me good advice, but just can't risk it.

It's interesting about the compulsions thing. It seems to me that they're very common in children who have a high level of intelligence, the display of which is often 'blocked' by the compulsion. Christopher Stevens son picked things like colours up very quickly, for example. The thing is, DS2 doesn't have any. He has a few obsessions (TV mostly) but can be fairly easily diverted. I think that's also why he's so passive and happy - he doesn't feel compelled to do anything much, so it doesn't matter much if he is thwarted. But I'm beginning to think that his learning difficulties may be greater than we think and may almost be a by-product of his passivity, iyswim. Don't get me wrong, I'm not wishing compulsions on DS2 and in no way under-estimating the effect they have on a child and his family (esp having read the book and listened to Yurt). But in a way I was a bit when reading the book that David learnt stuff so quickly (with no ABA, no biomed, no Son-Rise...)that it's taking DS2 an AGE to learn - and he'll sit in a chair being 'good' for England!

Hope that doesn't sound stupid

sphil · 25/03/2008 23:22

Oh Yurt - will give him big smacker from you . And haven't forgotten about video...
E-mail me about new programme - sounds exciting!

yurt1 · 25/03/2008 23:46

sphil as part of the assessment to decide whether ds1 should be included in the program we had to send some video of him interacting and doing ABA etc. It was noted that much of his non-compliance centres around kind of tuning out and going through the motions but not really engaging (not looking in the right direction etc). It is a problem. He used to be like that all the time. Very very passive. BUt that changed very rapidly when he was 5. I think passivity does allow you access to more life experiences which is a good thing.

I emailed you earlier tonight but I think my email might be playing up.

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sphil · 25/03/2008 23:54

That's exactly what DS2 does - tunes out and goes through the motions. Interestingly enough he is becoming gradually less passive as he gets older - and he's 5 now. So I may regret writing my last post...

I do agree about the life experiences issue.

sphil · 25/03/2008 23:55

Got your e-mail and have replied - at length!

yurt1 · 25/03/2008 23:56

and I've replied to that.

Am off to bed now. Hope to be able to tell you all about the new program soon (if we get accepted)

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TotalChaos · 26/03/2008 08:22

wow, fascinating letter.

DS is also quite passive I think. In a nursery type setting he is very keen to comply with what the other kids are doing, so I think it's very easy for his needs to be overlooked. Sorry to hear you are having problems with the school Sphil.

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