A conference for people with Asperger's syndrome by people with Asperger's syndrome
...
Speakers include:
Lord Wakehurst, Lorna Wing, Uta Frith, Pat Howlin, Angela Browning MP, Tony Bailey, Isobel Heyman, James Graham, Declan Murphy, Lynne Moxon
Were the speakers chosen by autistic people? The ones whose names I can recognize aren't autistic, and I'm wondering where the "by" part comes in.
Were the speakers chosen by autistic people?
Yes, according to the conference's organiser Pamela Yates (who leads a support group in central London). However PY (who is not autistic) will have had the final say.
FYI Angela Browning has an autistic son.
Sjöjungfru
To assume the absence of something just because it can't be readily perceived, is hardly good science?
Is that a question?
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However, I don't like the idea of having Asperger's/HFA "speakers". That bit does looks a bit sycophantic to me.
When I posted this on the original AFF board, someone criticized the conf organisers for having the gall to call it "by people with Asperger syndrome" when most of the speakers weren't Aspies.
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I've come across a speech by Angela Browning which paints a very bleak picture of life prospects for someone with Asperger syndrome.
[Many] adults with Asperger syndrome may be well educated but unable to manage cooking or even to seek appropriate help if they have a physical medical condition. It is rare for people with the syndrome to marry. Indeed, I know of none who has. The inability to form social relationships denies them friends and permanent relationships. They are only too aware that they miss out in their teens and adulthood on what they clearly see as normal interaction among their siblings and peer group. Equally, the communication impairment affects people's position in the workplace, if they are fortunate enough to have a job.
Thanks ever so much Mrs B - you sure know how to make a recently-diagnosed Aspie feel good. [/sarcasm]
BTW I can cook - it's no big deal.
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[She] was probably addressing NTs so had to add drama to it to keep them awake through the 5-min-long speech, poor dears.
Are you equating neurotypicality with ADHD?
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Angela Browning is likening us all to her experiences with her own son who is in his thirties and whilst I applaud the fact that she is after all trying to help, she does so in a typical one-experience fashion not looking at the broader picture. Not at all fair to us is it?
I would say that Lianne Holliday Willey is just as guilty of equating from the particular to the general. Look at her tips for coping with college life at the end of Pretending to be Normal - they're all based entirely on her own experience. For instance: get yourself a disabled parking space because all Aspies have an appalling sense of direction despite all being able to drive.
Getting back to the subject of this thread, one of the speakers is a shrink called Lynne Moxon who is giving a 30-minute talk on sex & relationships followed by 15 minutes of Q&A.
Sjöjungfru
Further to Angela Browning's gloomy prognosis [
is that the right word? - please correct me if I'm wrong], here's a link to a piece by an Aspie who claims that "relationships and dating are virtually non-existent for people with the actual diagnosis."
http://www.autismforum.net/index.php?mod...tion=14:14
We know the owner of the site and writer of this piece
I have my doubts about the writer's assertion that "Usually, people ... start more serious relationships by the time they are 13". Perhaps American teenagers are precocious [sp?] compared to Brits, and perhaps I'm old-fashioned and/or naïve, but that strikes me as very young! I'm sure there are lots of people, NTs as well as Aspies, who don't have boy/girlfriends at school, perhaps especially if they go to a single-sex school, but manage it once they go to university.
Much stronger and very negative views have been put on
http://www.lonemutant.blogspot.com .
Ah, Lonermutant - I remember him from Aspergia.
Here are my impressions of the conference, as jotted down on the train travelling back. Be warned: this is a long posting... :shock:
Declan Murphy: 'Recent advances in understanding of Asperger's syndrome'
Lots of graphs, pie charts etc. There was one scattergraph that showed that hippocampal glucose metabolism declines with age for women but not for men. I wanted to ask him afterwards what that means in practice - it sounded ominous! But I wasn't one of the lucky few who got to ask a question.
Lorna Wing: 'A brief introduction to Asperger's syndrome'
Text of this presentation was in our conf packs. Amongst other things she claimed that Sherlock Holmes had AS (on what evidence?). Usual stuff about Newton & Einstein, plus Erik Satie and LS Lowry. I've often heard ol' Isaac & Albert cited as Aspies, but not the latter two. I suppose I should be thrilled because I love Lowry's art & Satie's music (pity he didn't compose anything for recorder!) but that's beside the point. Towards end of talk LW said, "Life will never be easy for anyone with Asperger syndrome but it is good to know you're not alone and that you are in some excellent company." I hissed, "But they're all DEAD!"
Uta Frith: 'Asperger's syndrome: evidence from self-reports'
Baffling. Only goes to show that you can find evidence for any symptom of Asperger's! Viz: difficulty in identifying feelings, difficulty in describing feelings, & externally-orientated feelings. Apparently a typical Aspie would rather watch 'light' entertainment shows than psychological dramas. Eh?? And we have difficulty in taking pleasure in physical things or social situations. What about the Aspie woman who refuses to wear uncomfortable high-heeled shoes just because they're fashionable - doesn't that indicate a wish for physical pleasure?
Tony Bailey: 'The genetics of autism'
Yet more research reports...
Angela Browning MP: 'Where do autism and AS stand on the political agenda?'
Talked about latest parliamentary bills. Afterwards 1st q came from Jim, a guy I remember from the Berkshire Autistic Society, about the Barry George / Jill Dando case - grinding his usual axe. AB (quite rightly) refused to be drawn into discussion of individual cases. Next q came from a (non-autistic) mother of an autistic child about problem of dealing with GP who hasn't heard of Asperger's. Hang on - the conf rules explicitly said that carers (i.e. non-autistics) should not ask questions! So much for "a conference for people with autism & Asperger's syndrome".
Lord Wakehurst's address [no title]
Praised the conf title "For people with Asperger syndrome". Except that it wasn't - see the question to Angela Browning. His lordship said it was an opportunity to find out about sources of support. Wrong again. All we'd had so far was "Look at my lovely research results". Lord W's brief address was followed by presentation of awards for achievement. These awards were all, without exception, given to the central London support group who had organised the conf. What a waste of time in a conf that is supposed to be of national relevance! One of the awardees received his gong for "lifetime achievement" in virtue of the fact that he'd spent 40 yrs in employment. Is that patronising or what?! I caught up with Lord W @ lunch and told him (politely!) what I thought of his bit. He congratulated me for being in employment. Clearly he has very low expectations of Aspies' capabilities!
First after lunch were 5 Aspies talking about 'Living with Asperger syndrome'. All but the last one were from the central London support group.
Jonathan Koeze: 'My interests'
The title was in the plural, but he seemed to have only one interest: collecting postcards of nocturnal scenes. Takes all sorts...
Robin Oliver & Julie Tarr: 'Friendships'
Again a plural, but the talk was about one friendship - theirs. Hard to tell whether "friendship" was euphemism for "relationship" (although subsequent speakers seemed to think so). They have gone on holiday together (we were spared details of their sleeping arrangements!) but they don't live together. He lives in Hampton, SW London, & she near Norwich, so they tend to meet up in Colchester.
Tom Morris: 'My art'
Self-explanatory.
Ros Blackburn: 'Having the last laugh'
A more general view of living with autism. If this had been a public-speaking competition I could see her winning the trophy easily. She had excellent, clear diction, faced the audience, spoke without notes & injected the right amount of humour. And yet ... the content of her talk could be summed up as: "I have autism and for the benefit of the rest of you this is what it's like". Again, this contradicted the description of the conf as being for people with ASD.
Lynne Moxon: 'Don't sweep sex under the carpet! Helping to answer your questions about sex and relationships'
Lucky, lucky youngsters they are in NE England (where she comes from) to get this extensive sex education. All I got was the Tampax nurse at 13 and a Marie Stopes nurse giving us the lowdown on contraception in the 6th form.
Then the questions. First question came from a man who wanted to know definitions of: "snog", "go to bed with someone" and "pet". Couldn't he have got himself a dictionary?! And LM didn't even give him an accurate answer: she said "snog" meant "kiss" but it's more specific than that! You wouldn't sign off a letter to your auntie with "Love and snogs", would you?! I held up my hand to ask q about the issue of whether Aspie women find it easier than their male counterparts to find relationships. This has been claimed on more than one website; one American site even claimed that Aspie women have more success than neurotypical women. Didn't get to ask my question.
Isobel Heyman: 'Obsessive or obsessive-compusive? When to ask for help'
I was sitting on the panel in preparation for the final session, so I couldn't follow this presentation as the screen was over my head - literally!
Panel: 'A question of employment and further education - your questions answered'
Questions had been submitted in writing by the audience.
Once you've secured a job, what then? What about job satisfaction, career progression, changing jobs - are these luxuries a person with autism can't afford?
Pat Howlin [a shrink from the Maudsley Hospital] said yes, these things were important. Passed mike along to Aspie panellist Tim Loder who gave a rather long-winded reply, the gist of which (I think) was that he'd managed to succeed in self-employment & that this was something that autism support workers would do well to push more. However we had to move swiftly on to the next q. Pity, because I had a thing or two to say about career progression, as I was the one who had submitted the question.
Should one declare a diagnosis of autism to a prospective employer?
No definitive answer from panel.
Are there any sources of support for getting onto the property ladder? You only need to watch the numerous property programmes on TV to realise that even the most neurotypical of neurotypicals with supportive partners find buying a property very stressful. So what about us? Is it assumed that if we can hold down a job we can jolly well get off our backsides and go it alone? [Where are Kirstie and Phil for the autistic community?]
That was another of my questions. The chairman left out the bit about Kirstie (Allsopp) and Phil (Spencer). Pity, but I suppose it wouldn't do to confuse members of the audience who don't watch Location, Location, Location!
Robin & Julie (they who had earlier spoken about their friendship) answered in turn. R said this was a problem affecting a wide range of disabled people, because not being in well-paid employment makes the bottom rung of the property ladder that much harder to reach. J spoke of her grand ambition to set up shared housing communities for autistics.
What support is there for older people with ASD?
Not much, according to Pat Howlin.
Are there any sources of support for women with Asperger syndrome?
Julie: I believe there's a group in London. It was mentioned in the latest issue of Asperger United.
Me: I wrote the question, and I don't live in London; so that's no help for me.
Pat: For married women there are sources of support for couples...
Me: Oh great, so I have to get married first(!)
Thanks for the very detailed post, it was good to know exactly what went on there.
Overall, was it worth attending?
It was good to hear what these speakers had to say. Saves me having to buy any of their books!
Lord Wakehurst, Lorna Wing, Uta Frith, Pat Howlin, Angela Browning MP, Tony Bailey, Isobel Heyman
Sorry but I can't see ANY Aspie choosing these people
So having read your excellent report on the conference I stick to my opinion.
What nationality is Uta Frith? I couldn't place her accent.
For the benefit of those who couldn't make the Camberwell conf, Asperger United will be publishing transcripts of the speeches over forthcoming issues. They've started the ball rolling with Lorna Wing's in the October issue.
Assuming they proceed at a rate of one transcript per issue, then at AU's current quarterly rate it will take them three whole years to print them all.
Don't hold your breath...
Following on from my last posting, here's an excerpt from an email I received from Tania Chambers in the NAS's publication department:
Unfortunately we can only spare one or two pages for the 'word from the professionals' section. Our priority goes to getting out articles from people with Asperger syndrome. We have a long waiting list and very limited space and we don't have the budget to increase our page number or to produce more that four issues per year. I know it's not ideal but it's all we can offer at present.