Michelle (and others),

I'm working on an article for Calgary's Child magazine about the Friend 2 Friend Program (http://friend2friendsociety.org), and of course I have to include information about autism. The bulk of the article is information taken from interviews with people involved with Friend 2 Friend, so that should be fine, but I would like input on my paragraph about what autism is.

According to the Autism Calgary Association, autism currently affects 1 in 200-250 people. Autism is classed as a Pervasive Developmental Disorder in the Diagnostic and Statistical Manual of Mental Disorders-IV-TR, which lists the diagnostic criteria for psychiatric disorders as defined by the American Psychological Association. People who have an Autism Spectrum Disorder often have sensory processing differences, and these disorders are marked by difficulties in communication and socialization.

If I've misspoken at all, please let me know the correct terminology. I've tried very hard to get it right, but I know I probably got something wrong in there.

Thank you so much!

-Janna

Edited by author 07-13-2007 12:47 AM
For Mike PBJI, didn't you hear? Autistics can't even spell "sarcasm". Not unless we undergo extensive treatment... see /m1777 , for all the sensational details. And I can't get your video to work [sulks], though I toughed it out and managed to see Dinah's PBJI tribute (definitely worth it, life-changing even).

For Philip, I don't think we'll have autism studies courses equivalent to deaf studies courses in Canada any time soon. What we have instead are a whole lot of college courses, popping up everywhere, dedicated to cranking out ABA therapists.

While I remember, I should mention (don't think I have yet) that Canada now has its third Behavior Analyst Certification Board-approved university for BCBA training (Brock University in Ontario).

When are we going to have a PBJICB? And BCPBJIs?

Hi Dave C.,

A few examples of references: Battaglia & Carey (2006), Pavone et al. (2004; they use "primary" vs "secondary" autism, terms which also can be misconstrued). There's also the related but less clear and less consensual categories of "essential" vs "complex" autism (e.g., in Miles et al., 2005).

Autism is considered to be "etiological" rather than "idiopathic" when it is associated with a condition for which there is an identifiable cause.

Thanks Michelle! I think I get it (withhold sarcastic applause please!)

Oh, and Dinah- thanks for the PBJ Time YouTube link- displayed are some excellent early indicators that PBJI would be an effective intervention. I think I will rename it the PBJI Assessment Tool. :)

To see a PBJ Interventionist in action, see here: http://www.funnyordie.com/videos/414d913ce8

Maybe if we had PBJI academic chairs, the incident in the video above could have been avoided- PBJI is complex- especially with adults!

Edited by author 07-12-2007 10:04 AM
Further to /m6378 my local university offers undergraduate and postgraduate courses in Deaf Studies. See http://www.uclan.ac.uk/facs/class/edustud/deaf/index.htm.

The course description describes Deaf people as a unique linguistic minority group with its own history and culture. I supppose that is why no such subject as Autism Studies is taught in universities, as I suggested here roughly three years ago that it should be.

Hi Michelle,

With regard to the distinction you are making between idiopathic and etiological autism… is there published research in this area that you could reference?

I had thought that the term “idiopathic” had meant that the causal factors leading to the development of a “condition” were unknown and that the term etiological” implied that the cause of a “condition” was known. In the cases of fragile X or Down Syndrome the chromosomal variations (FMR-1 is different in Fragile X and children with DS have an extra #21 chromosome) that make up these conditions are associated with autism and may not be causal. The cause (etiology) of DS, for example is an extra chromosome… but the cause of autism within the sub set of people who have DS remains elusive (“idiopathic”).

Mr. Doherty's blog entries today - "News of huge increases in reported incidents of autism from the UK.....", "Even before the recent UK and Massachusetts news hit the world autism community.....", "With more information confirming that autism rates are increasing - for whatever the reason - autism societies in the US and UK......" come on the heals of his cross posting of the Observer's "1 in 58 - New health fears over big surge in autism" article to a number of New Brunswick autism lists he owns and/or moderates.

So far my 4 replies (3 on the 8th, 1 today), Dr. Dr Scott's retraction (her letter, a corrected link and the Telegraph article) and the Times article from SBC have not been allowed to be posted/seen by his list members.

...And, powerful and influential Canadian "autism advocate" Harold Doherty gives his stamp of approval to ASA, partner of the Autism Research Institute, for springing into action against that surging health crisis of autism http://autisminnb.blogspot.com/2007/07/aut...ism-society-of.html

What is ASA doing? Well, they're having their annual conference, and they invited Dr Wakefield to be one of their four featured keynote speakers. Dr Wakefield has certainly done a lot to create public health crises. ASA is also honouring Jim Adams (noted mercury/autism guy) and ASA's partner, ARI (the organization that welcomed Roy Kerry as DAN! doctor, after he supervised the death-by-chelation of Abubakar Tariq Nadama).

Interesting that another of the keynotes, Edward Carr, is a behaviour analyst. He once promoted the use of electric shock alongside Dr Lovaas (Carr & Lovaas, 1983), but is now a major promoter of PBS (Positive Behavior Supports). Last I looked, FEAT (of which Mr Doherty is a major supporter) is, uh, scornful of PBS and opposed to it being funded, as are major behaviour analysts popular with Canada's "autism advocates" (James Mulick, Gina Green).

And here's ASA showing its commitment to becoming indistinguishable from ARI: see Lee Grossman (ASA President and CEO) promoting Brian Jepson's very DAN!-looking book http://www.thoughtfulhouse.org/pr/jepson_book.htm , a book also supported by Doreen Granpeesheh, BCBA, one of Dr Wakefield's colleagues who has recently been given some ASA high honour (sorry no time to fetch the story). Oh look, there's Katie Wright again.

Both Dr Granpeesheh, and Stephen Edelson, Bernard Rimland's successor as head of ARI (which has a spanking new website), recently ran for election to the ASA board (see http://www.autism-society.org/site/PageSer...=asa_bod_candidates ). I read somewhere (Autism Diva?) that they won, but I'm not sure about that.

Edited by author 07-11-2007 05:56 PM
Prof Baron-Cohen speaks--to The Times, in an article headlined, "Autism: the truth" http://www.timesonline.co.uk/tol/life_and_.../article2060575.ece

"As the leaked and incomplete results of a study on autism again raise fears among parents, the scientist leading the research tells our correspondent that the new reports are alarmist and wrong."

Having pointed out the current connection between Dr Stott and Dr Wakefield, SBC illuminates (as many others have) the real purpose of the leak ("their" in this case meaning Dr Wakefield and two of his colleagues"):

"The draft report was leaked a week ahead of their GMC appearance. Baron-Cohen puts it like this: “We think it [the report] has been used. They’ve picked out the one figure that looks most alarmist.” Cambridge University is now trying to hunt down the source of the leak."

About that 1 in 58 terribly frightening figure:

"So, what are the facts on autism? Does the one-in-58 figure hold up? Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers."

The Times seems to confirm that the leaked study involves screening for Asperger's in school-age children using (possibly among other instruments) an instrument SBC's group recently devised (the Childhood Asperger Screening Test). SBC forgets to mention that the 1 in 100 figure (approximated from Baird et al., 2006) includes very few kids who could be given an Asperger's diagnosis and none (zero...) who actually were.

Last word from SBC,

"Research is sometimes slow but it is better to go slowly and get it right. Now things have been taken out of our hands and it’s very dismaying."

There is an accompanying article featuring SBC, "Genetics and the link between maths and autism" http://www.timesonline.co.uk/tol/life_and_.../article2060584.ece

The opening paragraph assumes that some autistics are write-offs due to being on one extreme "end" of the spectrum. I'd like to see some evidence for that, attached to something empirical. E.g., define that "extreme" end of the spectrum, please--what are the criteria? At what age do you apply them?

Meanwhile... SBC is building more seesaws--he's now looking for people who are lousy with numbers but whizzes in English (whether spoken or written isn't specified). He says, in explaining why it might be that autistics continue to exist,

"We’ve not just evolved to be social. We’ve also evolved to systemise and to make tools. Those tools range from flint axes to mobile phones. A hammer is just a system for driving one thing into another. I would even argue that the drive to systemise is more unique to humans than the drive to socialise. Many species socialise but very few systemise."

I didn't know this at all:

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Baron-Cohen revealed that he had been partly inspired to study autism by his sister, Suzie, who is in her forties, wheelchair-bound and has profound learning disabilities. Apart from the first few years of her life, Suzie, who cannot speak, has lived in institutions.

He says: “Despite having no language, she has fantastic emotional contact with people, with good eye contact. Her social side appears almost unaffected. In some ways, she’s the mirror image of autism. I’m sure she has influenced my way of thinking that some aspects of the mind are independent of others.”

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Edited by author 07-11-2007 04:25 PM
"Psychologists to Review Stance on Gays", TIME article http://www.time.com/time/nation/article/0,8599,1642023,00.html

"The American Psychological Association is embarking on the first review of its 10-year-old policy on counseling gays and lesbians, a step that gay-rights activists hope will end with a denunciation of any attempt by therapists to change sexual orientation."

In response to accusations of bias (because those who consider homosexuality to be a sin, etc., were not included in the review panel):

"Clinton Anderson, director of the APA's Lesbian, Gay and Bisexual Concerns Office, insisted the panel would base its findings on scientific research, not ideology."

That's good. But no matter what the scientific findings are (even if there were hundreds or thousands of published studies), you still need to take care of ethics.

Here's a bit more:

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However, one of the task force members, New York City psychiatrist Jack Drescher, said the conservatives don't acknowledge the harm that might be caused when a gay patient — even voluntarily — undergoes therapy to suppress or change sexual orientation. "They want a rubber stamp of approval for a form of therapy that's questionable in its efficacy and they don't want to deal with the issue of harmful side effects," said Drescher, who is editor of the Journal of Gay and Lesbian Psychotherapy.

As the APA planned the policy review, it received input from gay-rights groups, including Parents, Families and Friends of Lesbians and Gays. PFLAG's executive director, Jody Huckaby, said reparative therapy had been particularly harmful for young gays whose parents insisted on trying to change their sexual orientation. His group contends these efforts can cause depression and suicidal behavior. Current APA policy stipulates that no therapy should occur without "informed consent" of a gay or lesbian client. Jason Cianciotto of the National Gay and Lesbian Task Force said he hoped the APA would declare that no young person could ever be deemed to have given informed consent, and thus no reparative therapy would be approved for minors.

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

Hi Mike PBJI,

If you can hang in there for a few weeks, the Raven paper should be published (official version...). I offered the paper to Dr Novella because he wrote about it, and possibly had not read it (the paper is currently accessible to science writers, which--among other things--he is).

You wrote,

"Would you say that the best short answer for the 'what is autism' question is: "... a profound difference in the processing and analysis of information." ?"

Yeah, somewhere in that neighbourhood, if you want a very short answer. I'm not sure it's the "best" short answer in all situations, but it's pretty good and I can't think of a better answer that's as short. To see how this looks surrounded by context, see "About the Talk" here http://www.waisman.wisc.edu/events/mottron-f2006.html

It's a really good idea to get away from the (false) notion that autism is a bunch of (inappropriate, maladaptive, inadequate, disordered, defective, impaired, etc.) behaviours. Overt behaviours are used to locate individuals who have a high likelyhood of being autistic, but those behaviours aren't "autism" (any more than the behaviours of a blind person are "blindness").

Re etiological vs idiopathic, in a minority of cases (somewhere around 20%, a very rough figure) where autism is diagnosable by current criteria, autism will be associated with another diagnosable condition (e.g., fragile X, tuberous sclerosis). This is etiological autism. Sometimes etiological autistics are absolutely representative of autism, but sometimes this is not the case and the non-autism condition is going to be much more determinative of outcomes than autism.

In idiopathic autism, which is the majority of cases, there is no such associated "etiological" condition.

This distinction has been useful in understanding the presumed high rate of epilepsy in autism. There is at least some evidence that epilepsy is associated not with autism, but with other conditions associated with autism. So--while there's a very high rate of epilepsy in etiological autism, the rate in idiopathic autism is not too much higher than in the typical population.

From a keyword search I did yesterday on my local university library online computer:

Number of titles listed: autism=105, autistic culture=5, deaf=503, deafness=110, deaf culture=23, deaf language=130, deaf studies=44.

Hi Michelle,

Could you beam me a copy of your in press paper referenced below? Your responses in m/6376 are helpful to me in something I am trying to get my head around- point 3 is very well stated but just so I am clear- Would you say that the best short answer for the 'what is autism' question is: "... a profound difference in the processing and analysis of information." ?

That sure sums things up better in my mind than the usual triad of impairments that is recklessly thrown around. Sometime could you explain the difference between etiological and idiopathic (Eg. Can you dumb it down for me?)

Edited by author 07-10-2007 08:10 PM
"Autism and IQ" http://www.theness.com/neurologicablog/default.asp?Display=134 Rather sloppy blog post about the Raven paper, by the Yale neurologist and renowned skeptic Steve Novella. Here's my posted response to Dr Novella:

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

Few remarks, setting aside the larger issues about what intelligence is (but I suggest that Neisser et al., 1996, is a good place to start).

1. Raven's Progressive Matrices (RPM) is not a "novel" test of intelligence. It has existed in nearly the same form for almost 70 years. A large chunk of the literature in intelligence is based on RPM, which is considered a "paradigmatic" test (Mackintosh, 1998) and universal marker (Flynn, 2003) of fluid intelligence. Of all intelligence tests, it has the highest correlations with other tests, and has been found to be the most complex and best single test of general intelligence (the classic diagram of test intercorrelations from Snow et al., 1984, continues to be reprinted throughout the literature). To see how existing theories of autism predict how autistics would perform on a complex, general single test of intelligence, I suggest you read our paper (Dawson et al., in press).

2. Are Raven's Matrices just one way of measuring intelligence in autistics? In our paper, we report a very high individual item difficulty correlation (near unity) between autistics and non-autistics. As we point out, this makes it likely that RPM is measuring in autistics what it measures in non-autistics. This contrasts with the uneven autistic subtest profile in Wechsler scales, and factor analytic attempts to compare autistic and non-autistic performance on Wechsler scales (e.g., Goldstein et al., 2006).

3. Autism is best defined as a profound difference in the processing and analysis of information (many major research groups currently reject the notion that autism can be reduced to a social deficit, and there are many findings of autistics, including those supposedly "severe" or "low-functioning" types, performing as well as or better than non-autistics in social tasks). A blind person, who also has atypicalities in the area of processing information, is not going to perform well on a test requiring the processing of visual material, but does this mean s/he is mentally retarded? Similarly, until rather far into the previous century, it was assumed that most deaf people were mentally retarded. And blind people deprived of the kinds of information which they have the ability to process and therefore learn from are not going to have good outcomes. Same goes for autistics.

4. What you presume to be "severity" of "symptoms" in autism (which more accurately means the extent to which autistic traits and abilities are obvious) is known to be a poor predictor of outcomes in autism (Howlin, 2005), not the excellent predictor you assume it to be. As often happens in autism, your views in this area are popular, but are not necessarily science-based. The current gold-standard diagnostic instruments (ADOS, ADI-R) do not allow for judgments of "severity". In work done by our group with autistics of school age or older, both autistic and Asperger individuals meet both ADOS and ADI-R cut-offs for autism.

5. We presented data at IMFAR this year that showed that presumed "severity" of autism in three different domains (including social and communication domains) did not (at all) predict intelligence in adulthood (Mottron et al., 2007). "Severe" autism phenotypes are not associated with low intelligence.

6. The best adult outcomes reported in the autism literature belong to autistics who, as children, fully and without any doubt met the most restrictive, narrowest, "severest" criteria for autism ever devised.

7. There is a division within autism that may (but does not always) have a bearing on outcomes, but it is not one of "severity" or between Asperger syndrome and autism. It is the difference between etiological and idiopathic autism.

All I have time for (and written while doing a bunch of other things, sorry), and I've barely gotten started. If you want to read the in-press paper (set to be published in Psychological Science in August), ask and I'll beam it over. Always a good idea to read the science before pronouncing on it. And I really have to get round to blogging about that "severity" thing some day.

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

"Autistic boy's family sues Mercer County doctors" http://www.pittsburghlive.com/x/pittsburgh...ealth/s_516475.html Abubakar Tariq Nadama's parents have filed a lawsuit over his death-by-chelation.

Remember that ASA's valued partner, the Autism Research Institute, claims that:

"The child's mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again." (from http://www.autism.com/treatable/chelation/chelationsafety.htm ).

But the media story reports:

"The Nadamas' lawsuit also said that the defendants knew chelation therapy was not an approved treatment for autism and is not effective."

And adds that Abubakar's death was witnessed by his 9yr old sister.

Also see Autism Diva http://autismdiva.blogspot.com/2007/07/ker...th-of-abubakar.html (comments are interesting also).

Hi Emmanuël, thanks for the heads-up re your redesign. I liked your animations though all of them at once was pretty distracting (so your new index page is easier to read).

Hi Sharon,

I think you were exactly as polite as you should have been... (I'm still grinning from reading that post).

Now where's that promised (by Dr Scott) NAS "formal press release", or how about a formal press release from SBC Himself or the ARC? I wonder if I've missed something, but the non-UK media has (so far) almost entirely stayed away from the 1 in 58 story. Maybe it's the aroma?