Edited by author 08-14-2007 10:09 AM
There's an article in the Guardian today about the Horizon schools for autistic children in England. See http://education.guardian.co.uk/egweekly/story/0,,2147760,00.html.

Michelle, I really love your posts and articles, I have been thinking for years that most IQ tests were inacurate. As a scientist, I have questioned ABA for years as well as the many other assumptions I was told when my son was diagnosed almost 5 years ago, and finally found a different program for my son, who is autistic. I wholeheartedly agree with your ethical concerns as well as the continuing emphasis on autism as a mental health disorder, which only serves to further the Bettelheim sham.

To make things even more interesting, about 2 years ago Temple Grandin told me I have Asperger's Syndrome. I don't consider myself disabled in the least. Sure, I don't have real friends, never have, and I have always known I was different than most people, but I have a wonderful husband and two kids, something that a lot of "experts" say should never have happened. I get tired of the limitations people try to place on my son.

Anyway, just wanted to say hello and tell you I admire your advocacy. I am trying to get parents on my Cafemom group for Autism/Asperger's/PDD Awareness group to see things from an autistic perspective. I posted Jim's "Don't Mourn for us" piece, and boy did I get a reaction! I am planning on continuing to post articles from autistics to educate parents.

Karen:)

Edited by author 08-14-2007 06:32 AM
Thank you for your inspiration, Michelle. I am a mental health consumer who accepts behavior mod as long as I can participate in all aspects of the planning and implemention. I have a blog called Reward and Consent. I have posted numerous links to your paper, The Misbehaviour of Behaviourists. Are you an autistic person? If so, is it ok to identify you that way publicly? Could you please answer this with an email?

http://rewardandconsent.blogspot.com

Dave ... greenspace802@yahoo.com

Hi Michelle,

That's neat having most of your formal work in one place.

Edited by author 08-14-2007 04:52 AM
The book 'Gifted Young Children: A guide for teachers and parents' by Louse Porter, Open University Press, UK (1999) describes and critiques Applied Behaviour Analysis in the context of a discussion on different methods of behaviour management.

Ms. Porter writes that the "great strength of ABA is its emphasis on unbiased observation of the child's behaviour and careful monitoring of the success of a management program. But it requires detailed recording that is difficult to fit in with one's other tasks."

"Second, the approach works: it changes individuals' behaviours [Alberto, P.A. and Troutman, A.C. 'Applied behavior analysis for teachers', Merrill, Upper Sadle River NJ, 5th edition 1999], although perhaps mainly in tightly controlled conditions that cannot be duplicated in natural contexts."

But she goes on to severely criticise ABA. The fundamental philosophical objection is that "its behavioural gains come at a high price to the individual child, to onlookers, and to the adults who oversee a controlling regime." She lists the disadvantages of punishments, among which are:

"Children learen to behave well only to avoid punishment, rather than developing a 'conscience'."

"Punishment can decrease children's ability levels".

"Punishment can produce negative emotional side-effects, including low self-esteem in children who receive repeated punishment."

"Children are likely to withdraw emotionally from their relationship with a punitive adult."

The goal of ABA is "complance/order". Authoritarian discipline, of which ABA is the most common example, "which demands compliance produces withdrawn, anxious, unhappy children who become hostile when frustrated and are unwilling to persist at tasks."

If there hasn't been a large typographical error, it looks like Thomas Insel has decided to lend his full and considerable authority and support to the DAN!-world-view National Autism Association (right, those are the parents Dr Insel is listening to). See list of featured speakers at this year's NAA conference http://www.nationalautismconference.org/allspeakers.htm

There's Dr Insel, shoulder to shoulder with David Kirby, Jeffrey Bradstreet, Andrew Wakefield, Anju Usman (the DAN! doctor who referred Abubakar Tariq Nadama to Roy Kerry, the doctor responsible for Abubakar's death-by-chelation), and their like. Steven Gutstein is there, showing off his standards. Farther down the list is Dr Wakefield's behaviour analyst colleague, Doreen Granpeesheh, right alongside Dan Olmsted.

Is this the NIH's new direction for autism research? Dr Insel not only heads up the NIMH, he heads up the IACC (Interagency Autism Co-ordinating Committee).

Edited by author 08-13-2007 11:59 AM
Hi Michelle,

Re /m6528, I don't remember Jim Sinclair saying in his presentation: "just because you don't cry, doesn't mean you are not sad", as quoted in The Joy of Autism blog post.

I've just posted a CV of most of my formal work, including links to abstracts and (free) pdfs where available. It's here http://www.sentex.net/~nexus23/cv.html (and linked to from the No Autistics Allowed index page http://www.sentex.net/~nexus23/naa_03.html ).
Thanks to my boss Ralph for doing all the heavy lifting.

Edited by author 08-13-2007 11:20 AM
Just before I read Ms Duley's "most horrifying" remark, I read this story about three young children (aged 7-9) bullying another young child such that this other child died http://www.cbc.ca/canada/manitoba/story/20...itoba-drowning.html

I also ran into this article about the bullying of gay students http://www.pantagraph.com/articles/2007/08...b773df027429519.txt

What's so striking is that not once is it suggested that the way to deal with the bullying of gay students is to put these gay students in social skills training programs. And not once is it stated or suggested that gay people cause themselves to be bullied by others, as routinely happens in autism. Instead, a school superintendent says,

"We try to educate kids that being different is not bad."

Also, there are laws:

"The U.S. Supreme Court has held that districts may be held liable for failing to address known harassment, including harassment by other students. The federal law also prohibits sexual harassment based on a student’s failure to conform to stereotypical notions of masculinity and femininity, according to an opinion from the U.S. Department of Education."

"Under suspicion: Researchers now believe that autism can be caused by genes in combination with environmental triggers. The question is, what are those triggers?" from the Boston Globe http://www.boston.com/news/globe/health_sc...uspicion/?page=full

Wherein we learn that vast amounts of research time, effort, money etc. are going to be redirected from other fields (e.g., like how to understand what autism is in order to be able to consistently help autistics) into the desperate search for environmental causes for autism. Why is this happening?

""Environmental research will be a much bigger field going forward," said Dr. Thomas Insel, director of the National Institute of Mental Health. "A lot of parents have been telling us about their concerns; now we're listening very closely.""

Of course. And Dr Insel doesn't have to listen to autistic people, because according to him we don't even have personhood http://www.neurodiversity.com/autism_and_personhood.html

What are the parents that Dr Insel (and many others) are listening to saying? A parent called Nancy Duley, who considers her autistic daughter to have "slipped away into her own little world", said the following at a big UC Davis press conference:

"When no doctor can tell you why your child has autism, or how you could avoid it or treat it or cure it, as a parent that is the most horrifying feeling to have -- that there are no answers"

And what is the goal, to ensure that innocent parents like Ms Duley are no longer horrified by having an autistic child? Here is Gary Goldstein, chairman of the scientific board of Autism Speaks:

----------------------------------------------------------- ---------------

Goldstein, who is also president of the Kennedy Krieger Institute in Baltimore, recalled wistfully the success of epidemiologists who cracked Reye's Syndrome, a rare brain-swelling disease that killed young children in the wake of benign infections such as chicken pox. Researchers figured out that Reye's was triggered among genetically vulnerable children by that staple of the sickroom: aspirin.

"The proof of the pudding was, take away the aspirin and it's gone," he said. "Wouldn't it be wonderful if we found something like that?"

---------------------------------------------------------- ----------------

Nothing like equating autism with a fatal childhood disease to keep parents horrified and the money pouring in. But wait, there's hope!! Some day we'll find the answer and there won't be any autistic people at all any more. Wouldn't it be wonderful?

Hi Chris,

Raven's Progressive Matrices, the test on which many autistics performed well in our study, was first published and therefore made available almost 70 years ago. "Revolutionary"? RPM is one of the best studied, best established, most durable, and most important tests of intelligence available.

Also, while there are behaviour analysts who take the position that cognitive processes don't exist and/or should not be considered, this is an extreme and anti-scientific position which does not reflect well on those who embrace it. There was a "cognitive revolution" but, like the availability of Raven's Matrices, it happened long before FC was irresponsibly promoted.

And this (from Vernon, 1965) was published more than 40 years ago:

"First, as the severely hearing-impaired are a language-deprived group and performance IQ tests are in essence cognitive tasks, the implication follows that level of language development may not be related to cognitive functioning. The logic of this position is that the deaf, a language deprived group, score as well as the controls who have normal language development."

Michelle, you probably don't need reminding, but not everybody on this list may realise how revolutionary this approach to IQ is. My favorite statement of the old consensus came in an anti-FC article (Jacobson, Mulick, and Schwartz,1995) back in the day, setting out the fundamental principles that;

• General delays or deficits in language function are closely related to general delays or deficits in intellectual development;
• the everyday facility with which people with autism or mental retardation use a language (e.g., spoken, written, or pictorial) is an accurate depiction of their ability to do so, and
• there is no clinically significant phenomenon that inhibits the overt production of communication and "masks" normal communication skills (i.e., actual production is representative of "internal" speech skill).

That there is a strong presumptive relationship, in general, between overt production and actual ability is a cornerstone of psychological assessment methodology, statistics, and psychometrics (Jacobson et al., 1995: 755).

See here.

If you believe, as it says there, that the reason people don't speak is because they don't have the ability to do so, you're not going to offer them alternative means of communication. If you believe that it's more likely that people don't speak because they have one or another specific communication problem, you will.

Edited by author 08-12-2007 10:33 AM
In response to Dinah ( /m6533 ), there are two related papers, Howlin et al. (2000) and Mawhood et al. (2000). The second one, which I'm familiar with, reports intelligence scores (RPM and Wechsler; abstract is here http://www.ncbi.nlm.nih.gov/sites/entrez?D...nel.Pubmed_RVDocSum ).

All of the autistics (19) in this study were male. They show a pattern of higher RPM vs Wechsler scores. Only performance and verbal IQs are given for Wechsler (no full-scale IQ). As adults, the autistics had an average Wecsher VIQ of ~73 and PIQ of ~83. Their average RPM IQ was ~98.

The autistics had lower RPM IQs as adults than as children, but only 11 of them had both scores available (so far as I can tell, many of these children would have been too young when first assessed to be tested on RPM and WISC). For those 11, their average RPM IQ as children was ~114, and as adults was ~101. The control group (the language group) showed a similar loss (from ~101 to ~86).

RPM is a good test that has stood up well over time, but it does have problems. Not with the test itself (what it measures), but with how percentiles are determined (the problem of norms--which norms are good norms?), and with how IQs are determined (RPM scores may not be normally distributed, which means that standard scores--IQ scores in this case--have to be regarded with caution). So I'd want to know a bit more about Mawhood et al.'s data before drawing any conclusions.

Edited by author 08-12-2007 09:03 AM
Hi Sharon G,

I agree with you on all counts. I wish those phrases, and some others, had been different also.

So far as I can tell, Ms Begley was trying to highlight the fact that human beings (autistics and others--she does not limit this to autistics, to her credit) are being completely written off because of false assessments of their abilities. These false assessments result in human beings being dehumanized. If major tests of ability can't distinguish between humans and vegetables, then these tests are grossly misleading and harmful.

This is giving her the benefit of the doubt. But the major point of her article is not that people with very low IQ scores are vegetables, but that these people are being grossly misjudged and mistreated (and dehumanized) due to our own profound stupidity and prejudices in failing to assess their abilities fairly or to even notice their abilities.

Ms Begley demonstrates her own failure to assess fairly the abilities of autistics. E.g., she assumes that autistics are deficient in emotion (see Philip's summary of Jim Sinclair's presentation) and social connection, because we may be atypical in expressing both, just as our intelligence is atypical.

Thank you for the interesting article in the Newsweek.
I liked to read it except for some phrases I wish been else.
Maybe I'm over sensitive, but today every association of the word puzzle with autism makes me a bit tense.
I was surprised to read this: "it's no wonder so many wind up with IQ scores just above a carrot's ".
A few weeks ago a correspondence with one of the biggest newspapers in Israel resulted official apology after a columnist compared IQ of autistics and down-syndrome children to IQ of a specific parrot.
And this one also:
"Not a single autistic child scored in the "high intelligence" range on the Wechsler; on the Raven's, one third did. Healthy children showed no such disparity."
As I understand the intention with "healthy" is to say "non-autistic". if so, why not just say that?

I think that without the puzzle, carrot and the health issues I would not hesitate to write the newsweek (with thanks).

Thanks for the paper. a former article in this subject was translated to Hebrew and posted in the Israeli autistic community (ACI) site. I think this one will join it soon.

Excellent article in Newsweek, there are some good journalists around. I might compile a list of them some time...

Which reminds me that there were some very agreeable Autscape meetings focussed on using the energy around to make the world a more autism friendly place, with a specific emphasis on actively including people who do not use speech effectively and are not currently in touch with Internet activity. We will start with an all round resource audit (eg of friendly media). Everyone can help. I'm optimistic something good is going to come out of this - watch this space!

Like Philip I had a lovely time at Autscape, though I will remember the flood only as an early riser who saw all the worried people rushing around. For me it was one of many entertainments.