The future of autism - Donna Williams

[jimjamshaslefttheyurt]

Received this from Donna Williams. She was asked for a paragraph on how she sees the future of autism. I asked if I could quote it-- she said yes but could I date it as 2008:

"The future of autism for me, is where 'autistic personality' and 'autistic withdrawal' are separated out from 'developmental delay', 'sensory perceptual disorders', 'communication disorders', 'health disorders' and 'co-morbid disorders' so we can finally distinguish which people need help and adaptations and which need only understanding, acceptance and advocacy and we live in a society where those are achievable through respectful means."

I thought it was just about spot on and perhaps something the NAS needs to consider......

Also she has a thing about the difference between autism condition (which need intervention) and autism culture (which doesn't) which I think is made in that quote

Do you think it is that easy to separate disorders out though?
I am starting to think there is no such thing as a 'condition' common to a group, only that each individual has a discrete set of traits/symptoms.

Am certainly v suspicious of the disorders and impairments cited by SALTs.

That's the way the literature is going moondog. Have a look at Happe's recent stuff.

I think Donna Williams big point is that a lot of people with autism have other conditions which are treatable on top of the autism itself, and you can work on those whilst accepting the autism iyswim.

I can see that (lots of stuff going on).
I work with some people with several diagnoses (eg DS and Autism) and i wonder if that is really worth knowing or is it just another blow for parents to deal with?

Also, bearing in mind the fact that most help on hand in pretty shite,one wonders whether also it is worth complex labels/diagnoses, when powers that be obviously can't cope effectively with even the basic stuff.

"think Donna Williams big point is that a lot of people with autism have other conditions which are treatable on top of the autism itself, and you can work on those whilst accepting the autism iyswim."

Sounds fair enough to me.

Yes.
That applies to everything and everyone though surely.

I suspect in part she's referring to the Aspie-auti pride/LFA /biomed divide which is springing up. Saying that you can treat conditions whilst respecting autism. She talks quite a lot about that.

I particularly like the word 'respectful' in her quote. Though I slightly disagree with her....I think (though it's difficult to tell from just one paragraph)

At various stages in my life, I'd have moved between those categories. At times I've needed just understanding and acceptance. At others, I've needed a lot of help. In some settings, I cope just fine. In others, I can barely cope at all.

If we try to categorise people into one of the two things - needing help, not needing help, I wonder what new barriers it will put in place?

There's certainly a huge war out there between LFA and HFA/AS, and between Cure and Acceptance groups. I've often needed a proverbial 'tin hat and shield' in discussions, even if trying to mediate. If we can get to a point where people are accepted for who they are, and believed when they say they need help or don't need help at that time, and where we can offer that help without subjecting people to years of demoralising tests and forms to complete...then we'll have definitely got somewhere. I think maybe that's what Donna means too.

I don't think she would disagree with people moving between categories at different stages of their life.

I remember her telling me not to be guilted into not helping my son. That was so helpful at the time- especially to hear it from someone on the spectrum.

Who tries to make you feel guilty about helping your son? I get the 'you're a bit delusional' looks at times but no one has tried to make me feel guilty - so far..

Moondog-can you expand on what you mean by 'suspicious of the disorders and impairments cited by SALTS' Not picking an arguement at all, just not clear what you mean.

I'd written to Donna WIlliams asking for help on compulsive activity. As part of that we talked about the whole cure vs acceptance thing that amber refers to. There are a lot of groups out there who are anti biomed and anti ABA for example. She was referring I assumed to what I tend to call the militant aspie groups, who I think need acceptance but don't always appear to appreciate the difference between autism as they have it and non-verbal autism with LDs. I don't think DW's is that keen on ABA incidentally but she certainly recommends some biomed approaches in some cases.

It's a huge issue in the autism community at the moment. Threatens to blow apart the NAS imo.

hi everybody i was wondering if sum 1 cud give me advise, ive got a 9 yr old son who has bn expelled from school 2 day its bn comin 4 yrs tho cos he wor always gettin excluded from school, hes bn 2 cahms nd ive bn told he has adhd, but now a other doc has said hes just anger, problem now is i dont no wat 2 do, i feel lyk am stuck in a rut wit no way out plz sum 1 HELP

Nikos, I think it perpetuates the myth that dosorders of this type are like physical ailments which can be a.) identified and then b.) cured. I think it detracts from the fact that they are managed and addressed but certainly not done away with like shingles or TB or chickenpox.

I also think the boundaries between one and the other are so vabgue and shifting as to defy discrete categorisation.

I'm a salt (as I think you know) but have been v influenced by ABA recently which recoils from such terminology, pointing out that it is often no more than a fancy way of specifying a problem.

So, auditory processing disorder is no more than problems distinguishing between sounds and their meaning. Therefore ,why not just say this and cite specific examples.

PDD NOS is the classic. Just a posh way of saying 'Christ knows'

ABA is concerned with the individual not the group and this is how i apporach my work. I am not that interested in the cited disorder or impairment,just the person and how they present.

Princess, start a new thread and you should get some answers.
Also, try and write proerly as it is easier to read. Textspeak makes it hard to understand what you mean.

Very powerful points Moondog.

I shall be looking at this thread more than once, I think.