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The Misbehaviour of Behaviourists - Michelle Dawson

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13648
Michelle Dawson
05-06-2015
01:37 AM ET (US)
Putting this here to put it somewhere on the record.

I was grossly misrepresented in this French media story http://www.mediapart.fr/journal/france/060...s-en-plus-contestee which I found only by accident, long after it was published

The journalist, Marianne Niosi, had contacted me and I had expressed my willingness to answer her questions. She ignored this and wrote about me anyway, changing my views and work and so on to suit her story.

When I found the resulting article, I wrote to her and to Mediapart, the publisher. Soon after that, the article was then paywalled (as it is now), which might be a coincidence.

Eventually, after a lot of back and forth where I asked for a general correction and apology, I was told the article had been amended with a correction. I no longer have access, so I can't confirm this. But here is the text of the correction, or so I've been told:

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

La chercheuse Michelle Dawson, dont nous citons les propos dans cet article, souhaite apporter les précisions suivantes:

- « Je ne cautionne pas l’idée d’une « culture autiste » et me suis opposée à ce point de vue de façon publique. Les organisations qui soutiennent la « culture autiste » ont fait savoir qu’elles étaient opposées à mon point de vue et à mon travail. »

- Lors du procès Auton, qui a vu la Cour suprême statuer sur le remboursement de la thérapie par ABA, elle précise qu’elle a pris position contre les plaignants mais aussi contre le gouvernement. « Je me suis opposée à la négation, par les deux côtés, des droits fondamentaux qui sont cruciaux pour le bien-être des individus. »

- Enfin, à propos de l’ABA : « J’ai cherché de façon exhaustive une justification aux standards scientifiques très bas imposés aux autistes dans la littérature qui sert de caution aux interventions basées sur l’ABA. Il n’y en a pas. Au contraire, il y a de fortes preuves que les normes de base de la science et de l’éthique sont aussi importantes pour les autistes que pour d’autres. »

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

That is the journalist's translation of what she selected from her request that I "annotate" her article. This doesn't cover all the false claims she made about me. Here is some of the "annotation" I sent her:

"In this article, all autistic adults are assumed to have similar views. We don’t. For example, my view that autistics deserve basic standards of science and ethics is strongly opposed by ASAN, which claims to represent autistic adults."

"This misrepresents my position in Auton, where I opposed both sides, which were indistinguishable in imposing rock-bottom standards on autistics, and argued that the facts from both sides should be thrown out. Here is my position in Auton, in opposing both sides: autistics should benefit from and be protected by the basic standards of science and ethics which everyone else can take for granted. And yes, this is a human rights issue. In other words, I opposed the segregation of autistics, by both sides, from the basic rights and standards which are crucial to the well-being of all individuals. And note that by the time a case arrives at the SCC, there are major limits on what can be argued; I had to argue within these limits."

"I do not see autism as a way of being or as a way of living. I have never expressed this view, much less defended it. I would never express or defend this view."

Note: In fact I don't even know what it means! Often when I'm interviewed, it's assumed this is my view, but like a lot of other assumptions from media and academics, it is not based on what I've actually said or done.
 
"I do not support “autistic culture” views of autism and have publicly opposed these views and the poor standards which have accompanied these views. Organizations which support "autistic culture" views of autism have strongly opposed my views and work."

"The only thing I’ve brandished is basic standards of science and ethics, which all nonautistic people can take for granted. My knowledge of the literature in the area of autism and ABA is excellent. I have exhaustively searched for any justification for the extremely low standards imposed on autistics in this literature and in the promotion of ABA-based autism interventions. There is none. To the contrary, there is strong evidence that basic standards of science and ethics, and basic human rights, are as important to autistics as to everyone else."

"I take ABA seriously as a field of science. This means reading the very large literature (including textbooks, manuals, as well as peer-reviewed papers) and applying basic standards of science and ethics to this literature. This is a lot of work, but I think autistics are worth the time and effort, and this is what I do in every field. This is not an attack on ABA. Criticism is a crucial part of science; it is not an attack on science."

"I have written about the problem of autistics who have not received ABA-based autism interventions being written off. But this again is an issue of scientific and ethical standards. Using these basic standards, which mean extensively reading the literature, it can be shown that these claims are not accurate, according to what we know now. The proliferation of false claims reflects very low standards of science and ethics on the part of those making them. The proliferation of false claims also makes it difficult to conduct fair tests of the benefits and harms of popular expensive treatments. We thus have expensive popular autism treatments whose benefits and harms, even in the short term (much less the long term), are largely unknown."

"I did not testify at the Supreme Court of Canada. This misrepresents not only me but the SCC process in Auton."
 
"In Auton, I had to argue that autism is not a fatal disease, as this had been claimed and accepted as true in the lower courts. My arguments about differences were based on how all other individuals are regarded and treated under the relevant law in Canada. This was not a vision but a simple argument that autistic people are human beings and should have the same basic human rights as everyone else."

For the record, etc.
Edited 05-06-2015 01:39 AM
13647
Michelle Dawson
05-03-2015
10:10 PM ET (US)
Awareness I can totally support http://www.bbc.com/earth/story/20150430-help-for-hedgehogs

"Hedgehog Awareness Week runs from the 3rd to the 9th of May and this year the focus is on gardens, and the simple measures that can be taken to make a positive difference."

Always a relief when April ends. As you can see, May is a big improvement.
13646
Michelle Dawson
05-02-2015
10:41 PM ET (US)
While I'm here, the IMFAR 2015 program (and program book) is up http://imfar.confex.com/imfar/2015/webprogram/start.html

"Anxiety" appears 38 times in the program book pdf! Plus "anxious" twice. There's an entire anxiety special interest group http://imfar.confex.com/imfar/2015/webprogram/Session3276.html (doesn't look good to me) as well as an oral session http://imfar.confex.com/imfar/2015/webprogram/Session3223.html

By the way, re /m13644 , the paper that springs to mind for me, re anxiety and autism, is http://link.springer.com/article/10.1007%2Fs10803-014-2153-3 in which autistics and nonautistics worked and learned together as equals. What a concept. But I'm pretty sure some people would call this approach "ableist" for not using the right model or for who knows what. Anyway, the "autistics and nonautistics work together as equals" approach has been pretty much trashed by advocates and academics who use words like "ableist," and who in my experience promote segregation--at least when it comes to autism.
Edited 05-02-2015 10:42 PM
13645
Michelle Dawson
05-02-2015
10:27 PM ET (US)
There's a really big literature on anxiety in autistics and it's pretty interesting, if you read it carefully.

But I'm not sure what "ableism" means, sorry. Different people define it in different ways and it's not a word I know how to use. Maybe someone could clarify that for me.
13644
theamazinj
05-02-2015
08:50 PM ET (US)
Hi everyone,

I am doing research for my class at CUNY SPS for psycho social about how Autistic people struggle with anxiety with their families and the community they are in because of not only needing to cope with anxiety but dealing with the ableism around too. Every time I search for sources, everything is based on the struggles that families and the communities have, but not what Autistic people have.

What do you think I can use for sources? Does anyone have any suggestions for sources I can use?

J
13643
Michelle Dawson
04-25-2015
10:30 PM ET (US)
In the same week, first Alex's Boston Marathon (I'm in awe...), then Roland Fryer wins the John Bates Clark medal http://marginalrevolution.com/marginalrevo...es-clark-medal.html

Pretty sure I mentioned Roland Fryer upthread, when he won a MacArthur grant http://www.macfound.org/fellows/3/ He uses RCTs to address difficult questions about schools, and has memorably stuck by his standards--for which I've quoted him in presentations many times http://www.washingtonpost.com/blogs/dc-sch...IQAAST1tO_blog.html

"“I am a pointy-headed economist who refuses not to aim for the gold standard in empirical research (i.e. randomization) whenever possible,” he said in an e-mail Wednesday morning. “Anything less is not fair to kids, their parents, or the policy makers who use the research.”"

Autism-relevant!
Edited 04-25-2015 10:31 PM
13642
jypsy
04-24-2015
07:32 PM ET (US)
Alex's first Boston Marathon http://therunman.blogspot.ca/2015/04/my-fi...oston-marathon.html
13641
Deleted by topic administrator 04-06-2015 04:50 AM
13640
Michelle Dawson
03-28-2015
10:39 PM ET (US)
Well, retirement. I did my annual Jake lecture at McGill (guest lecture to Jake Burack's grad students), that was 2 hours. Part of that was on the Matson saga and it was interesting showing how things unfolded (or didn't) over time. I always enjoy talking to Jake's class but this year was my favorite Jake lecture so far. Especially considering I'm retired, or will be any day now...

Speaking of the Matson saga, RDD also has a new editor (like the new RASD editor, also from the UK), and is looking for associate editors, deadline at the end of April http://www.journals.elsevier.com/research-...mental-disabilitie/

I'm registered for IMFAR 2015 which means I should probably attend, it's in Salt Lake City (never been there before) and the schedule doesn't look inspiring http://www.autism-insar.org/imfar-annual-m...conference-schedule but then it almost never does. Sally Rogers has already been an IMFAR keynote, for those keeping track, and anyone who saw her non-presentation of her multi-site RCT last year has to wonder how low the standards can go. And Laura Schreibman? Good grief.

Also re the 2015 keynotes, a recent commentary from Roy Grinker http://link.springer.com/article/10.1007%2Fs11013-015-9444-9 (free!)

For those interested, there is also the first-ever "regional" IMFAR in 2015--in Shanghai, in November http://www.regionalimfar2015-shanghai.org/weben/
13639
jypsy
03-15-2015
07:46 AM ET (US)
Yesterday, on a beautiful "calm before the storm" day (today we have a blizzard... calling for 45cm snow in the next 24 hours. I think we need 47 to break our all time winter snowfall record) anyway... yesterday I drove almost to the very west end of the Island and went snowshoeing with a runner I know through Alex. I took the scenic routes there and had a lovely drive, lovely snowshoe, lovely day...

Your post was icing on the cake Michelle. Couldn't help but look back on your very long road, since I've known you... I'm sure there's still the odd person (read that however you like!) still out there throwing mud and such in your direction but, even in the old days, not much of it ever hit you and none ever stuck... and you just kept trudging forward through it all.

I suspect, like others before their time, you'll continue to be discovered and your true contributions recognized long after your time. Yes, you can retire, you've left such a huge mark, seemingly on the little people and big people alike... But there's still so much that could be done and so much you could do, might as well put off retirement for a bit yet. (Now I'm sitting here trying to imagine what Michelle's retirement plans would be....)

And while I'm here... 5 weeks from tomorrow is the Boston Marathon. The other day they announced the bib numbers, wave & corral numbers. The lower your numbers, the faster you are. This year’s race will consist of four waves, with eight corrals per wave and a total of 30,000 runners. Alex's bib number is 1802. He is in the second corral of the first wave. The first wave lines up behind the elite men and goes when the gun goes off. Fellow runner Stan is #350, up in the 1st corral, and another runner Calvin, is in Alex's Corral. Alex & Calvin get along really well so I'm pretty happy that Alex will have Calvin's company at the start line. Alex's has been fighting not only our ridiculous weather this winter but also plantar fasciitis (foot is recovering better than the weather!!) so I don't think Alex will be able to stick with Calvin to the finish line.... but time will tell, I've pretty much given up on predicting outcomes when it comes to Alex's Marathons. He tells me he won't be stopping to kiss the Wellesley girls...
13638
Michelle Dawson
03-14-2015
08:56 PM ET (US)
"Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment" http://www.molecularautism.com/content/6/1/12 New from us (open access), here is the abstract's conclusion:

"These results indicate that ‘minimally verbal’ or ‘nonverbal’ school-aged autistic children may be at risk of being underestimated: they may be wrongly regarded as having little cognitive potential. Our findings support the usefulness of strength-informed approaches to autism and have important implications for the assessment and education of autistic children."

Also http://www.theguardian.com/science/head-qu...n-sigafoos-lancioni (I wasn't interviewed) and a bit of response and background http://twitter.com/autismcrisis/status/576173516644564992

Can retire now for sure! Any day now...
13637
Michelle Dawson
02-18-2015
01:58 AM ET (US)
"The drift in front of this house in North Cape is bigger than the house" and other photos from epic PEI snow storm http://www.cbc.ca/news/canada/prince-edwar...-pictures-1.2960026

I'm deep green with envy.
13636
Michelle Dawson
02-13-2015
12:33 AM ET (US)
New from Stephen Wiltshire, "Liver Building, Liverpool" http://www.stephenwiltshire.co.uk/art.aspx?Id=7089

Also a train and a lot of snow http://www.youtube.com/watch?feature=playe...lpage&v=Yja2VmZOfdA

And the sad news that Professor Nicholas Mackintosh has died http://www.psychol.cam.ac.uk/news/professor-nicholas-mackintosh I highly recommend his book on human intelligence (two editions: 1998, 2011)--if you read one book in this area you should read his.
Edited 02-13-2015 12:33 AM
  Messages 13635-13633 deleted by author 02-06-2015 06:45 AM
13632
Michelle Dawson
01-18-2015
10:59 PM ET (US)
For Beppe, thank you for your interest. Very sorry but there's no French or Italian translation (there's been a German translation though).

For me interviewed in French (on Radio-Canada, from Saturday morning) see http://ici.radio-canada.ca/emissions/Les_s...2011-2012/index.asp and scroll down to the (awful) puzzle pieces. It was a struggle on my part for many reasons, but did my best.

For those following changes in ICD-11-beta (with the final ICD-11 now due in 2017), after a long period of only minor changes in autism spectrum subgroups and sub-subgroups, there's been yet another overhaul http://apps.who.int/classifications/icd11/browse/l-m/en in fact the draft seems to be running through the thesaurus in trying to name subgroups based on "functional language" (by which they probably mean speech).
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