Thursday, August 28, 2008

Donna Williams profound comments on neurodiversity

I just read an interesting entry inDonna Williams blog just now. I have never been a fan of Donna Williams. I read Nobody Nowhere many years ago, a brief time before it was published in the U.S.A. I obtained a copy published in England from David Miedzianik in the early 1990s. I did not feel the book was very well written and had a hard time understanding how it became a best seller. I was also skeptical that Donna really had autism. Her symptomatology sounded far more like a multiple personality disorder such as was in the book Sybil, popular back in the early 1970s.

I was very pleased to read some very good common sense notions of hers on neurodiversity that I agree with. Though I am not sure if she agrees with everything that I believe about neurodiversity I totally agree with the following statement:

I think the ND idea is also based on the presumption that others are NT, or neuro-typical, which I don’t believe. Non-spectrum people are really diverse in their own right and all humans are atypical in some way. When I sit with those fixated on so called NT stereotypes, the stereotypes are represented by movie characters and celebrities in gossip magazines but don’t actually hold up in a large percentage of general society. Yet is one self isolates on the presumptions of a THEM and US reality, soon enough the stereotypes become unchallenged, presumed realities. And built into the term NT is a supremist view that all great advancements in society were only and ever due to those who were Neurodiverse. Well Hitler was also pretty atypical, so was Stalin, Pol Pot, Mao. It’s a matter of who one chooses as one’s icons. And one could be fairly typical yet out of need, accident or default, have a remarkable discovery, invention, innovation which even surprises themselves. So I think the political camps are very populist, at times supremist in their stance, and I just don’t do wars.

This is a very profound statement and I thank Donna very much for making it (thanks if you happen to read this, Donna).

Especially enlightened was the Hitler metaphor. Hitler's behavior could have been considered autistic. He certainly was a loner in his youth, high school dropout, outcast from society. Yet he does not make the neurodiversity list along with Albert Einstein, Bill Gates and Thomas Jefferson. I wonder why?

Also, are any two brains exactly alike? Therefore there is diversity among NTs as well as among individual autistics. If the hypothetical cure for autism could happen would it mean that everyone would be the same, one size fits all, no. Absolutely not, we would still have real neurodiversity. Not the scam and the cult that so many embrace as their opiate.

I hope to see more good statements from Donna Williams, particularly about the neurodiversity movement.

13 comments:

Socrates said...

So when you and Donna have kicked Neurodiversity to death; What's left? Pure pathology? And out of interest, what's your qualification for undiagnosing Donna's autism and diagnosing Personality Disorder?

jonathan said...

No qualification, no diagnosis, just my impression from having read her book. I don't know if she is autistic or not.

I wish neurodiversity a hasty death, yes. We have pure pathology now, so it is really a zero sum game.

Socrates said...

I started a thread on AutSpks asking "Do you want to be cured"; of about 20 replies, 19 said no, and one said maybe. It is a strange, strange pathological disorder that 95% of those responding don't want curing. I'm afraid with the twenty-somethings, Alex, Ari and Gareth leading the Battlecry, ND isn't about to be beaten soon.

Roger Kulp said...

I have had numerous go-rounds with the neurodiversity crowd,on the assorted message boards,where there are mostly ND types.One of the founders of one board in particular,helped found the ALF at Second Life.

I was soundly beaten up,and ridiculed there,for putting forth the notion that autism can coexist with systemic autoimmune disease,as well as other serious neurodevelopmental problems,and that under these conditions,autism is no more something to "celebrate" than Down's Syndrome or Systemic Lupus Erythema.

The ignorance that many in the neurodiversity movement have,of just what constitutes autism is astounding.I am also extremely angered by the whole self-diagnosis thing.

I truly believe those of us,who ARE against the neurodiversity types, and believe they do more harm,than good,need to be better organized, and more vocal.Also,a group like Autism Speaks,needs to take a concrete,official position on the issue.

I don't know who makes me angrier, the neurodiversity people, or the vaccine nuts.

I have only recently been diagnosed ,as an adult,with an ASD,and it's not Aspergers,but PDD=NOS.I have had a number of other neurodevelopmental,and neuropsychiatric diagnoses,going back to early childhood.As a child I was like someone with classic Kanner autism,cognitive problems and all,but not retarded.

I have had chronic/recurring meningitis since I was a baby.I have a past history of Childhood Interstitial Lung Disease.I have rheumatic heart disease,reactive arthritis,inflammatory bowel disease,and interstitial cystitis. I also have something similar to profound hypogonadism,but is instead caused by a severely underdeveloped neuroendocrine system.

All this an autism,too.I am not really well enough,but I believe I am badly needed as an activist,and as a voice against these nuts.I have registered the domain name iamapuzzle.org,but because of worsening RHD,I have been unable to do anything on building a site.I am hesitant about posting my email address here,but if anybody is serious about helping me,do not hesitate to contact me.

jonathan said...

Thanks for your post Roger. All of the behavior you describe is pretty much par for the course for most of those in the ND movement.

jypsy said...

"I am a person diagnosed with Autism who has spent a large chunk of my life celebrating the personhood of all people with Autism, myself included."
--Donna Williams

As you've been told numerous times, "Neurodiversity is part of the general idea that disabled people should have human rights."

How is "celebrating the personhood of all people with Autism" in any in conflict with "the general idea that disabled people should have human rights?

Anonymous said...

Just like not being autistic, Donna has also not been ND. She's a tool of the biomedical industry, pushing phoney baloney stuff like cranial sacral therapy, hbot and other quackery.

Anonymous said...

http://tinyurl.com/5b3pdl

Pretty much proof Donna only became autistic when in college and about to publish a book:

Autism - a special report by Kathy Gollan
Norman Swan: Hello. The Health Report this week looks at the strange case of Donna Williams, author of several remarkable books about autism. Donna's third book, "Like Colour To The Blind", comes out in Australia next week, and like the others, it tells the story of her life as an autistic person.
Her previous books have been worldwide bestsellers. "Nobody Nowhere", for example, was on the New York Times bestseller list for over a year, and the reason seems to be that they so powerfully tear aside the curtain that surrounds autism.

Her books were marketed as a unique insight into the autistic mind, and they've been an inspiration to many parents struggling for some insight into the closed world of their autistic child.

Autism affects four in every thousand Australians. It's a baffling and heartrending condition. About half never learn to speak; most are intellectually disabled; all display an inability to understand social interaction. A few are unusually gifted, and Donna, with her university degree, her brilliant writing style, was clearly put forward as one of those.

Donna Williams is now internationally recognised as an advocate for autism. She sits on several autism bodies and runs an autism advice consultancy.

But The Health Report today raises disturbing questions about whether Donna can be seen as in any way typical of an autistic person, and whether she should be seen as autistic at all. Kathy Gollan investigated the story.

Donna Williams: There are some good days, but the bad days are bad days, and any activities that involve more than one or steps, like cooking or making a cup of tea, can take me a couple of hours because I don't get things going in the right order, or I'm always sidetracked, and everything ends up joined in lines and I'm way off the track, doing something on the other side of the room. The word 'ouch!' comes 30 seconds after hurting myself, if at all; sleep is almost totally dependent on an ability to see a clock and sticking to rules of what time I sleep; hunger is almost non-existent and eating is like an exercise; difficulty getting emotional and social things from people's faces and intonation and body language leave me feeling that all communication is just to give out facts.

Kathy Gollan: For many ABC listeners, the first time they heard of Donna Williams was in this startling interview by Geraldine Doogue on the Life Matters program. Donna insisted on extraordinary conditions before she would agree to appear. The questions had to be given to her days in advance, she checked out the studio the day before, there were strict limits on the number of people who could be present, the lights were dimmed and Donna asked that no-one make eye contact with her. In spite of these restrictions, or perhaps because of them, it was a very moving interview as Donna struggled with her condition and attempted to communicate with the unknowable outside world.

Donna Williams: The difficulty in combining emotion and interaction is difficult, and it's painful. The concept of combining this with touch is nearly impossible and terrifying. The experience of seeing other people are coping and are being expected to act normal at any cost, regardless if you don't understand a normal behaviour - this is frustrating and it's excluding. At worst it's like being meaning deaf and meaning blind in a torture chamber that we call the world, and at best it's a beautiful existence in a self-governed, predictable world of colour, pattern and rhythm.

Geraldine Doogue: What internal force drives you on to help yourself in such a positive way? That comes through the book incredibly strongly, this drive, you know, to go to university, to study, to travel. You're very strong, aren't you?

Donna Williams: I don't know. I'm driven by many things. In my book I described that I had a battle to join the world and a battle to keep it out. So on one level it was a feeling of isolation and suffocation in myself that made me battle to join the world and this first set up the drive to develop these building blocks to what has now become the basic involvement with other people, and I also have a very obsession for equality and a very strong sense of justice.

Geraldine Doogue: This isn't scripted in, and we can cut it out - a strong sense of justice - where did that come from?

Donna Williams: You shouldn't do this to me, Geraldine. I cannot follow. Strong sense of justice.

Geraldine Doogue: You said it yourself.

Donna Williams: I think that when you feel like you're a victim and the only person like in the world, just stuck out there, and you feel like inside that you're not, everything screams to say no, this isn't right, and then if you see anyone else like stuck out there, on like an island too, you just scream for them too.

Kathy Gollan: This interview was one of the most popular ever run on Life Matters. The audience response was overwhelming. But among those who heard the interview was Dr Chris Eipper, a senior lecturer in Sociology and Anthropology at LaTrobe University. He'd been Donna's supervisor when she was in her final Honours years in Sociology. And he was amazed by the changes in Donna.

Chris Eipper: The tone and pitch of her voice was quite different. In the interviews she spoke in a more deadened voice, the animation had gone from it. It was a more strangulated voice. Whereas Donna had quite an animated style of speaking. The second one in the interview, she exhibited periodic non-comprehension. Well I never once experienced that. The scale of the precautions and controls that she insisted upon at the ABC flabbergasted me, because there was never any hint of that kind of thing. If that had been necessary, Donna and I would never have been able to speak to one another, because part of my practice as a supervisor was to ask the unexpected, push her, probe her, and respond when she pushed and probed me in return.

Kathy Gollan: Tony Laloutsis, a fellow student of Donna's for four years at LaTrobe University, also heard her on the radio.

Tony Laloutsis: That wasn't the Donna I knew. In fact hadn't she been announced as Donna Williams, and hadn't I put two and two together, I don't think I would have picked her as being who she was.

Kathy Gollan: In what way was it different?

Tony Laloutsis: The way she was talking, the slowness - I mean this woman used to - it was like you know amphetamine gone mad, million mile an hour, and then you hear this person right, and you think, 'What's happened? What's happened to this person?' I mean I know people change over time, but are they having me on?

Kathy Gollan: Autism is described as a developmental disorder. There is no objective test that will prove autism is present, there's no blood tests or brain scan you can give. You diagnose it by observing behaviour.

Dr Laurie Bartak is the clinical psychologist who first diagnosed Donna as autistic in 1991. He is an expert in the field of autism and a senior lecturer in Psychology and Special Education at Monash University. He told me what clinicians look for to diagnose autism.

Laurie Bartak: It's described as a behavioural syndrome, which means that it's a description of behaviour, and the three features that must be there are serious delay in development of social relationships, a delay in language developments, which involves difficulties in receptive language, it's not just expressive, and the presence of quasi-obsessive or ritualistic sorts of features in behaviour. And these are things like attachment to funny objects or difficulty in coping with change, and an insistence of routines and things like that. And there must be some aspect of all three of those things occurring by the age of about three.

Kathy Gollan: Could you ever describe an autistic person as being intuitive, for example?

Laurie Bartak: Not really with reference to other people's behaviour. If they were in any sensitive degree, I'd have to say that they didn't have autism any more. But all the people I know have continued to have difficulty in that sort of way. So for example I know somebody that has tertiary training and is married with children, but still says that they have to ask their partner what other people think if they've been to dinner parties and things like that, because they still can't get a feeling for other people's behaviour very accurately. And yet with that person, you wouldn't see anything obvious in their behaviour.

Kathy Gollan: Professor Fred Volkmar is Associate Professor of Child Psychiatry, Paediatrics and Psychology at Yale University. He has seen over a thousand people with autism and related disorders such as Aspergers Syndrome.

Most people with autism also have an intellectual disability. Those who don't may go to university as Donna did, but they usually study maths and science, subjects with predictable outcomes. And they always, he says, have trouble with making friends and social relationships.

Fred Volkmar: They learn a lot of rules and sometimes people are very, very good at it. One of the problems is that they tend to learn all kinds of rules, and they often never generalise, they never get the big picture as it were, of social interaction.

One for example autistic man I know is very interested in having a girlfriend. And so he has decided that one way to do that is to go to a bar and offer to buy a woman a drink, which is not so bad as far as it goes. Except he will then do something like throw the drink on the woman. But he thinks it's funny. The woman on the other hand, obviously doesn't think it's funny, and this poor gentleman has to learn repeatedly the rules about social interaction, one of which is you don't throw drinks at women in bars. The next time however, he may do something equally as inappropriate, although it won't be throwing the drink on the woman, it will be doing something just as bizarre and unusual.

So my experience - in fact I have never met a "normal" autistic person in the sense that I've never met an autistic adult who I didn't realise had a major problem with social interaction.

Kathy Gollan: And would that be obvious to someone who wasn't so well acquainted with autism as you are?

Fred Volkmar: It would be. The question of what it was would be another question, but I think it would be undoubtedly the case that people would be perceived as odd, unusual, markedly eccentric or be something that would be seen as off about them in a very major way, if you spent any time at all with them.

Kathy Gollan: Because there is no objective test of autism, one of the crucial indications is whether the symptoms are present by the age of three. Although Donna's Melbourne psychologist, Dr Bartak, interviewed Donna and ran tests of intellectual and comprehension ability, he did not speak directly with the family about her early history. He says that Donna is highly unusual as an autistic.

Laurie Bartak: The thing that I think one has to understand about her that she's not characteristic of a lot of people with autism and the only thing she has in common with them is her autism. But she's got an unusual capacity in one particular way, and that is that her language delay doesn't affect her written language. So she can write very well. She is much more impaired in spoken language, and when one talks with her even now, although she's enormously more able, she still has quite a demonstrable impairment in spoken language. And her comprehension of other people's speech is not marvellous.

I've had to, for example, talk to her slowly and with as little intonation as possible, for her to be able to comprehend and to keep things reasonably concrete.

Kathy Gollan: But she'd come to you, she'd already got her degree. Didn't you wonder how could she not understand and yet still get a degree?

Laurie Bartak: The things that she studied were things that she could rote learn, and she coped by sheer intellect and determination.

Kathy Gollan: But she didn't do a science degree, or a-

Laurie Bartak: No, I think she did Philosophy and Sociology and things like that, which I would have thought would be difficult, but it appears she was able to rote learn it and trot it back out and passed her essays.

Kathy Gollan: And did Donna have those obsessions?

Laurie Bartak: Yes, she's quite obsessed, she still is quite obsessive. She carries round things with her in a little bag which she has to carry round. She can't cope with change. Two or three years ago she could be sufficiently upset as to start to have temper tantrums.

Kathy Gollan: There is clearly a huge discrepancy between the person Dr Bartak saw in his rooms and the person at University a few years earlier. In fact the crucial symptoms critical for a diagnosis of autism were jut not there in the late 80s.

This has emerged from interviews with a group of people who knew Donna at University.

Chris Eipper lectured Donna in several Sociology courses and was her supervisor in her final year when she was writing her Sociology thesis. The title was 'Deviance and Normality: Exercises in Alienation.'

Chris Eipper: I mean I pushed her because of the nature of her topic, and because of the kinds of assertions she would make, that she was someone who you could really engage in debate with. I found her intuitive, she was very astute and very canny. I thought she was very shrewd. I thought there was a vulnerability about her, and I think I described to her in the review I wrote that she was a victim of her own victories, because she was a survivor. It was clear that she had come from a very troubled background and she'd triumphed over adversity, and I felt that she'd only done so because she'd worked out some pretty shrewd survival techniques, but she'd paid a certain price for those.

And it was also around this time that she won the Westpac award. Now this was an award made annually to a student of high academic standing who also demonstrated a record of community welfare work. She wrote a piece in the LaTrobe University Record about that, in which she talks about - I could quote her - 'I enjoy sharing experiences with others, and if others gain from this well then, we'll both gain', she says.

Lucinda Aberdeen: She was quite a challenging person, quite an engaging individual within the context of the tutorial group.

Kathy Gollan: Lucinda Aberdeen was Donna's tutor in 1985.

Lucinda Aberdeen: Not a controlling person, but someone who clearly had her own set of ideas. I'd say she was a prominent member of the group, and there certainly weren't any problems as far as making her ideas understood, or making contact with other people in terms of eye contact or anything like that.

Kathy Gollan: Any signs of obsessive behaviour, or rigid thinking, thinking along certain tracks, not wanting to deviate, constantly bringing up the same sort of subjects again?

Lucinda Aberdeen: No, I don't think so. I think that's what my memory, when you asked that question, I'm triggered into thinking she was quite nimble intellectually. She was someone I think, if I recall correctly, who to some extent felt out of context in a university environment, and the way in which she adapted was by being astute, by reading the situation fairly carefully at an intuitive level, and being fairly nimble and knowing how to fit in quite well. I don't remember her being obsessive in any way.

Kathy Gollan: Geoff Lyons was a fellow student of Donna's in her final year. He remembers the first time he met her, at the first seminar.

Geoff Lyons: At that stage you are heightened to just looking at everybody who walks in the door. And I do remember Donna walking into the room and there being a problem as to where to sit, because all the seats had been taken. And Donna quite merrily plonked herself right down the middle, in the front. That's how we met, and on that day - again, you're always looking forward to meeting people I suppose, at the breaks, Donna and I, and I'm not sure if anybody else, but we wandered down and had a cup of coffee.

I considered, in hindsight, I considered Donna quite intense. She was definitely well into the work that she was involved with, and she was definitely interested in everybody else's work, and interested in her own.

Kathy Gollan: All the people I spoke to thought that Donna was an intuitive, socially skilled person. Except for one - Marcia Devlin. She was a fellow student of Donna's in 1991. This was the year Donna began to say that she had autism.

Marcia Devlin: I don't think Donna's an empathetic person. She's very much focussed on herself. I used to be a youth worker, and she reminded me of kids I used to work with in youth refuges, who'd had absolutely horrific lives, and who had had to sort of block out the rest of the world in order to survive and just concentrate on themselves. She was very much like that, like it was very obvious to me when I met her that she hadn't had a happy upbringing. I mean I had no evidence of that, it was just an intuition. She wasn't empathetic about other people because she spent so much time thinking about herself.

Kathy Gollan: What did you think when she told you she was autistic?

Marcia Devlin: I thought it was sad, because I thought 'Here's a very emotionally disturbed young woman who is looking for something.' She was sort of pleased when she told me, she told me in confidence, that she - she said you know, 'Please don't tell anyone I've got this secret and this thing that you musn't tell anyone' and made me promise and then said, 'I'm autistic.' I thought it was sad because I thought 'I don't think you are autistic but I think you're trying to make sense of the experiences you have and that's something that you've latched on to.'

And a little while later, a couple of other people who I met up with from the Dip.Ed. would laughing and joking with me say 'Do you know Donna's secret yet?' And I said, 'I don't know what you mean.' And they said, 'Oh, she's autistic. She's going round telling everyone secretly that she's autistic.'

Kathy Gollan: Why were you and your fellow students so cynical about the fact that she was regressing into this autism?

Marcia Devlin: Because the change was so dramatic. And it seemed so acted. She seemed like she was making a point all the time of everyone knowing at every moment that she was autistic. And it appeared to me, and to other people I spoke to, that when she needed to understand something for her benefit, like she needed to understand what was needed for an assignment, she switched out of this "autism", understood what she needed to know and then went back into it again.

So where we were doing something that didn't matter, like we did you know Phys.Ed. we did square dancing, what's that? barndancing or whatever it's called, you know, she was 'Oh don't touch me, don't touch me!' and carrying on the whole time because it wasn't important. But when we were sitting down discussing what was required for an assignment, there was none of that sort of behaviour.

It was completely obvious that it was contrived. And then when people found out that this book had been accepted for publication, everyone said, 'Ah ha, that's why she's doing it.'

Geraldine Doogue: Can you describe to our audience what being in this radio studio feels like to you? What's your sensory experience of it?

Donna Williams: I like it. I think that this, I like this, this makes what I think is a world under glass. There's a window from between us and the people out there. And so we are closed in here and very protected. And we have the control. If we want them to come in or we do not want them to come in. And also I was thinking I like these - there's glass on the windows, four pieces of glass on the windows. And it's to trap noise, and I like this because noise hurts me sometimes so I think ha, ha, it's trapped in there and we are in control of this.

Kathy Gollan: The Health Report asked Donna three times to participate in this program, she refused. We have also tried to contact her family, but without success. In her book, "Nobody Nowhere", Donna explains how she was able to operate so successfully at University. She says she adopted personalities who had the social skills that she lacked, they had names - Willie and Carol.

She says that by 1991, when Marcia Devlin knew her, she was beginning to shed these personalities and the real Donna was emerging.

Dr Bartak had never come across an autistic person with multiple personalities before he met Donna, but he's heard of several since.

Laurie Bartak: It's not hard research data, but in the case of older, brighter people with autism, we are in quite a lot of cases getting reports of that kind of taking on of characters, or roles or part roles like that.

Kathy Gollan: There would I suppose have to be some gaps in those personalities that are caused by her delayed developmental behaviour.

Laurie Bartak: Oh yes I think so. I didn't know her when she was displaying those things. But I would expect that you would find that they were very cardboard sort of characters.

Kathy Gollan: But of all the people I spoke to who knew Donna at University, none of them had any sense that she was playing a role, that she was a cardboard character.

I asked Professor Fred Volkmar of Yale University if he had ever come across an autistic person who had multiple personalities.

Fred Volkmar: In my experience higher functioning autistic people are struggling with what they've got to present one single coherent personality, much less multiple ones.

Kathy Gollan: What about someone who was so intelligent that they were able to mimic social behaviour?

Fred Volkmar: I know a number of people with high functioning autism and in fact you know, god love them, they would love to be able to mimic social behaviours. It's one of the problems, they really do have just remarkable problems and social interactions which are really extremely persistent, even in the face of normal intellectual functioning. There's one man I know who's a very high functioning man who's a college graduate and who when he gets angry, has to yell and scream. And he gets surprised because his neighbours in the apartments, call the police. And so the police come round knocking at his door and he can't understand it. And you explain to him he was yelling and screaming and he says, 'No, no, but the neighbours can't hear it because they've got acoustic feeling tiles'. And he doesn't get the point that in fact, even though he has acoustic feeling tiles, the neighbours hear it anyway and so call the police. That there's a kind of a rigidity and fixity in the thinking, and an inability to accept the world from the other person's point of view which is very characteristic of autism throughout the entire range and spectrum of disability.

Kathy Gollan: Opinions about Donna's books are divided. Several leading authorities in the U.K. and the U.S. endorsed the book, implicitly endorsing her diagnosis.

Other professionals who did have doubts were unwilling to contradict Dr Bartak, an acknowledged psychologist with many years experience.

Dr Kathleen Dillon, who is a Professor of Psychology at Western New England College in Massachusetts has written books on autism for parents. And she is one of the few specialists who is willing to speak on the record about her doubts about Donna's diagnosis. She thinks that Donna's symptoms owe more to the abuse she suffered as a child than to autism.

Kathleen Dillon: I'm not sure how exactly I would classify her. I've thought about it, I've come up with possibly ten different kinds of disorders. The one that seems that I would chuck out I think if I was meeting her and trying to get some sense of who she was, was to think that maybe she has a borderline personality disorder, which is sometimes related to abuse. She certainly has had abuse, and she may have even experienced physical trauma to the brain from the abuse, and that could be the cause of her problem.

So it's really hard to know from a distance, and it's hard to know from someone talking about themselves. The characteristics, for instance, of Aspergers, they're fairly vague and I think that I could take instances in my own behaviour and classify myself as having Aspergers. I mean autism to me is one of the most peculiar disorders, and I don't see what she's doing as being that peculiar. It's a clinical judgement, there isn't any test that you can given, there isn't any blood test that you can take or any kind of physical evidence that will definitely say that you have the problem.

The thing that seems the most unusual for me is how she has such an active, introspective life that doesn't correspond to her level of behaving. I think that that's the incongruity there, that's sort of strange for me. And also that she can think as abstractly as she does when she's very young. When she's two or three years old, she's analysing her behaviour.

Kathy Gollan: Do you think that that's a problem if parents read the book and think that maybe their child will turn out as well as Donna?

Kathleen Dillon: I think that she can raise some false hopes in some parents. The thing I didn't like, someone was talking to her and saying 'You're not autistic, my twin sister has a daughter who's autistic, she was in a psychiatric hospital, she goes to the toilet anywhere and can't even feed or dress herself.' And Donna replies, 'I wanted to scream at her that it was probably because I was obsessive about trying that I had progressed in ways that this other woman had not.' So sort of giving the impression that this woman didn't make a big enough effort, and if she did, she would not display these active autistic symptoms. And somehow Donna's patting herself on the back that she made this big effort to get out of it. And I think that that's sort of unfair, because there are certainly some people that have brain damage, and that's why they have autism and I think that's the majority and no matter what they do, they're not going to reach the level that Donna has reached.

I think that's sort of an unfair kind of a comment.

Kathy Gollan: There has to be serious doubt about whether Donna Williams is autistic, and her books should be read with that in mind.

As for Donna, she may have made a prison for herself, but it seems that she's happy there. But she's also now making a living out of being autistic, running a consultancy and advising parents on the basis of her own supposed condition. That's a cause for concern.

If the diagnosis of autism in Donna is wrong, how could this happen? Professor Fred Volkmar.

Fred Volkmar: I have never myself had anyone where I thought the question was of somebody faking any tests, or indeed trying to "pass" as an autistic person, doesn't mean it couldn't happen. But I have never seen it. It's not something that people usually are eager to get as a diagnosis, but it doesn't mean it couldn't happen.

Kathy Gollan: What if, to take a theoretical situation, you came across a person who was studying Sociology at University who at University had acted in a play, who'd received an award for community service saying that they enjoyed working with underprivileged people, who seemed by lay people to be quite competent in the social hurly burly of University life, and indeed got an Honours degree in Sociology; are any of those things consistent with autism?

Fred Volkmar: They would be extremely unusual.

Kathy Gollan: You've never come across it in your experience?

Fred Volkmar: I know a number of people who have been college graduates with autism. They tend to be kind of idiosyncratic, eccentric folks who tend to be kind of loners or they've had unusual interests and they have not usually had really strong, reciprocal social interactions, they don't have very good friends or friendship relationships. It would be extremely unusual with that history to have someone who was autistic.

Kathy Gollan: And you've seen many people with autism?

Fred Volkmar: Probably over a thousand.

Kathy Gollan: And if in this theoretical situation, such a person later began to exhibit classic signs of autism, what would you think?

Fred Volkmar: People pretty much seem to be born with autism. When you talk to parents, they will tell you either from the word go, from the time the baby was a very little infant, or in a small - it would be 25% of cases - after age two, but before age three by definition, but before age three in any case, by definition, the person had marked problems with social interaction, communication and some other very unusual behaviours.

Someone who develops the syndrome, the "behavioural syndrome of autism" after age three, in fact is not technically called autistic, they have other troubles. But by definition you have to have problems before age three to get the diagnosis of autism.

Kathy Gollan: In fact Donna's psychologist, Dr Bartak, did not directly speak to anyone in Donna's family, and we haven't been able to contact them either. So we don't know whether she had the symptoms in early childhood.

Fred Volkmar: Then it's hard for me to know what to make of Donna Williams. Donna Williams' books in my view, while very interesting, are not typical of the experience of at least the 20, 30 or 40 higher functioning autistic people that I have come to know fairly well.

Geraldine Doogue: Was it actually liberating to find a label which fitted how you felt when you first heard the word 'autism', can you tell me about that?

Donna Williams: Yes. I felt very free. I felt free from blaming myself. I felt free from guilt and not keeping up or succeeding. I felt free from resentment and anger at other people's ignorance, and I felt a sense of belonging was possible for me.

Norman Swan: That excellent investigative report was the work of Radio National's Kathy Gollan. You can hear the program again tonight after the 8 o'clock news. Stay tuned because as you'll hear, there's going to be a follow-up on Life Matters.

Transcripts of The Health Report are available for $7 by sending a cheque made out to ABC Radio to The Health Report, GPO Box 9994 Sydney 2001. They're also on the World Wide Web at www.abc.net.au/rn.

And many thanks again to Robin Hughes for the Open Mind series which has been hugely popular and successful. A complete set of typed transcripts are available for $40 and also a complete set of cassettes for $80. Write in to the usual address.

jonathan said...

How is "celebrating the personhood of all people with Autism" in any in conflict with "the general idea that disabled people should have human rights

Easy, Jypsy, it violates their human rights not to have their serious disorder, defect (if you still want to call autism a disability i am not sure you want to call it those things) trivialized and it violates their human rights to have the best treatment possible to function as well as possible which constitutes a cure which it seems to me many in the neurodiversity movement (probably yourself included) if i remember correctly would deny these children if they had their way and such treatment existed until the child reached the age of consent, by which time it would be too late for treatment.

Foresam said...

Williams is not autistic. I don't even think she has a proper diagnosis.

Alex, Ari and Gareth are the products of years of brainwashing from the nitwits who started the Neuroinsanity garbage. They really need to be kidnapped and cured, although I don't think that's possible since I don't think any of them are autistic at all.

Of course, we should round up Gypsy and Michelle and cure those two for helping to spread this anti-cure lunacy for so long and infecting children with their nonsense.

jypsy said...

When have I *ever* trivialized autism?

"the best treatment possible to function as well as possible which constitutes a cure"

How is that? Are you cured? Is Alex cured? If you didn't have the best treatment possible, what should you have had that you didn't?

What treatment should Alex have had? Mr Doherty will say "ABA", Mr. Best will say "Chelation" what do you say?

Foresam said...

Jypsy, Try chelation and ABA to give your kid the best chance.

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