tag:blogger.com,1999:blog-367055642024-03-23T12:50:02.440-05:00the autism crisis: science & ethics in the era of autism advocacy Unknownnoreply@blogger.comBlogger111125tag:blogger.com,1999:blog-36705564.post-58439651754205011472018-03-05T04:59:00.001-05:002020-08-30T19:59:05.255-05:00Ethics in autism journalism: an open letter to Spectrum<div class="MsoNormal">
<blockquote>
<span lang=""><span face="">On 22nd December 2017, <a href="https://spectrumnews.org/">Spectrum</a> published an article with the headline: "<a href="https://spectrumnews.org/news/partnerships-people-spectrum-yield-rich-research-insights/">Partnerships with people on the spectrum yield rich research insights</a>."</span></span> </blockquote>
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<span lang=""><span face=""></span></span><span face="">We had agreed to be interviewed for this article. We felt it was an opportunity to inform Spectrum's readers about the scope and importance of the roles autistic people may play in autism research. </span> </blockquote>
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<span face=""></span><span face="">Instead, to our disappointment, the two
named autistic people in the article were subject to misrepresentation and a
systematic exclusion of their voices.</span> </blockquote>
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<span face=""></span><span face="">Unlike all others named and featured in the
article, neither <a href="https://twitter.com/Kabieuk">Kabie Brook</a> nor <a href="https://twitter.com/autismcrisis">Michelle Dawson</a> was interviewed, neither was directly
quoted, and neither was provided any links to their work or online profiles.</span> </blockquote>
<blockquote>
<span face=""></span><span face="">The message is that autism research is not
something these autistics can communicate about, much less contribute to as
equals, and that autistics must always and only be spoken for by others.</span> </blockquote>
<blockquote>
<span face=""></span><span face="">The striking segregation of named autistic
people in this article is inconsistent with journalist ethics. The autistics
who were misrepresented and denied a voice have been directly harmed.</span> </blockquote>
<blockquote>
<span face=""></span><span face="">Our goal is to bring this to the attention
of <a href="https://spectrumnews.org/">Spectrum</a> readers, so they may be better informed. We hope that <a href="https://spectrumnews.org/">Spectrum</a> will
improve its standards in the future.</span> </blockquote>
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</blockquote>
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</blockquote>
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</blockquote>
<blockquote class="tr_bq">
<span face="" style="text-align: justify;"><span lang=""><a href="https://twitter.com/ARGHighland">Kabie Brook</a>, Autism Rights Group Highland </span></span> </blockquote>
<blockquote>
<span face="" style="text-align: justify;"><a href="https://autismcrisis.blogspot.com/p/michelle-dawson.html">Michelle Dawson</a>, University of Montreal </span> </blockquote>
<blockquote>
<span face="" style="text-align: justify;"><a href="http://dart.ed.ac.uk/">Sue Fletcher-Watson</a>, University of Edinburgh </span></blockquote>
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<span face=""><b>Post-script</b>: this open letter is also posted <a href="http://dart.ed.ac.uk/open-letter-to-spectrum/">here</a>. </span></div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-85928827392969862962017-11-10T05:10:00.001-05:002020-08-27T04:38:50.902-05:00What history tells us about autism research, redux<div style="background-color: white; box-sizing: border-box; font-family: roboto, sans-serif; line-height: 1.4em; margin-bottom: 10px;">
In 2015 <a href="https://www.autistica.org.uk/">Autistica</a> invited me to write a short blog post on lessons from history for autism research. Then they took down their entire blog (was it something I said?). What I wrote remains relevant and then some, so here it is again. There are two minor wording changes. The original (archived <a href="https://web.archive.org/web/20161018060119/https://www.autistica.org.uk/autism-history-dawson/">here</a>) had no links; I've added a token few of the countless possible.</div>
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<blockquote class="tr_bq">
<a href="http://www.jameslindlibrary.org/">History</a> tells us about the great importance of standards in human research—standards of science, standards of ethics. History also tells us that segregation harms human beings. The costs and injustices of segregated schools, workplaces, and neighborhoods are well known, but there are other more insidious ways to segregate. Denying a group of people the benefit and protection of standards in research is especially harmful and violates basic human rights. It is segregation at its worst, destructive to human well-being and scientific progress both. Yet in autism intervention research, these lessons have not been learned.</blockquote>
<blockquote class="tr_bq">
Autistics have long been subject to separate, unequal standards in both research and practice. Claims that standards must be lower for autistics than would be acceptable for anyone else continue to prevail. When it comes to autism interventions, autism-specific low standards have proliferated, by popular demand, and are now nearly universal. History tells us to recognize this as segregation at its insidious worst, but this has not yet happened.</blockquote>
<blockquote class="tr_bq">
Instead autism organizations and advocacy leaders, including those known for opposing each other, <a href="https://iacc.hhs.gov/publications/general/2013/letter-on-coverage.shtml">agree</a> when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standards—especially in interventions. Ignoring the strong lessons of history, they all support the segregation of autistics from the basic rights and standards which protect and benefit everyone else. Their high-profile disputes are, instead, over which kinds of bad science and bad ethics should be foisted on autistics.</blockquote>
<blockquote class="tr_bq">
The results are obvious. In non-autism areas, poor quality research and its harms—its waste of resources, its misleading findings—are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved. But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature. Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.</blockquote>
<blockquote class="tr_bq">
In one <a href="https://link.springer.com/article/10.1007%2Fs10803-007-0517-7">influential paper</a>, the authors devised an elaborate system of autism-specific low standards for evaluating intervention research, then suggested extending this segregated system to other developmentally disabled individuals. The authors did not suggest doing this to the typical population, to people like themselves—this clearly would be harmful and unacceptable.</blockquote>
<blockquote class="tr_bq">
The segregation of autistics from basic standards in research has lowered the bar for standards applied to autistics in other areas: in practice and professional ethics, in public policy, politics, law, journalism, medicine, education, and the list goes on. It has further removed any incentive to fund, conduct, or publish good quality autism intervention research. Yet, the popular effort to impose autism-specific low standards in the area of intervention research can be shown to lack any scientific or ethical foundation.</blockquote>
<blockquote class="tr_bq">
It is remarkable that while alarming claims about “costs of autism” are everywhere, there has been no concern whatsoever about the high costs, at every level, of <a href="https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13315">autism-specific low standards</a>. What is the way forward? We should listen to what history tells us. We should stop segregating autistics from the basic rights and standards everyone else can take for granted. Then we can see what else is needed.</blockquote>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-21663537690894684082015-12-02T01:45:00.000-05:002017-11-11T18:32:54.143-05:00Notes on autism and assisted dyingIn the <a href="http://www.canlii.org/en/ca/scc/doc/2015/2015scc5/2015scc5.html"><i>Carter</i> decision</a>, the Supreme Court of Canada struck down the existing prohibition against physician-assisted dying, and gave the Canadian government until February 2016 to craft a legislative response. In response, an expert panel was created; see more information about the panel, <i>Carter</i>, and assisted dying <a href="http://www.ep-ce.ca/home/">here</a>. Very late in the panel's consultations, I was asked to provide comments about assisted dying and autism. My very brief submission, possibly too late to be considered, is below, along with a few further notes.
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-Oic0hS6ilZg/Vl6EipeYhTI/AAAAAAAAAio/4QLd6_VEJko/s1600/Carter_banner-with-leaf.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://4.bp.blogspot.com/-Oic0hS6ilZg/Vl6EipeYhTI/AAAAAAAAAio/4QLd6_VEJko/s1600/Carter_banner-with-leaf.bmp" /></a></div>
<blockquote class="tr_bq">
My purpose is not to take any position on the issue of physician-assisted dying, but to call attention to the situation of autistic adults in Canada with respect to this issue. </blockquote>
<blockquote class="tr_bq">
Autistic adults will be affected by laws on physician-assisted dying in as many ways and in as many roles as will nonautistic adults. For example, autistic adults may be patients or physicians and as such may variously wish to obtain, to avoid, to provide, or not to provide assisted death. </blockquote>
<blockquote class="tr_bq">
What sets autistic adults apart is their difficult situation in Canada when it comes to basic scientific, medical, and ethical standards—standards which are often described as universal. These are the standards on which the Supreme Court of Canada (SCC) <i>Carter</i> decision implicitly and explicitly depends. The decision’s premise is that these standards will indeed benefit and protect everyone, whatever their role or wishes with regard to assisted dying. </blockquote>
<blockquote class="tr_bq">
While this premise is sound for the nonautistic population, for autistics in Canada it fails and must be rejected. Autistics have long been denied the “universal” basic standards on which <i>Carter</i> depends. There is a long history of scientific and ethical standards being lowered or discarded in autism research, a long history of unfounded but dominant claims that basic standards are somehow bad for autistics, or are too difficult to apply, or are not merited by this population. Lower standards for autistics than would be acceptable for anyone else have spread well beyond research and now permeate autism practice, advocacy, jurisprudence, journalism, policy, and politics. </blockquote>
<blockquote class="tr_bq">
In Canada there is no organization which promotes basic scientific, medical, and ethical standards for autistics. To the contrary, any suggestion that standards for autistics should resemble those for everyone else has been strongly opposed. This is reflected in public policy and generally in how autistics are regarded and treated in every aspect of their lives. </blockquote>
<blockquote class="tr_bq">
Under the dominant low standards, autism is viewed as grievous, as irremediable (beyond a tiny early window of opportunity), as causing enduring intolerable suffering, as an appalling burden on families and society. Media stories have mentioned individuals in Belgium euthanized for autism (Lerner & Caplan, 2015). A recent paper, while very preliminary, found that autistic adults seeking assisted dying are not mere rumors (Theinpont <i>et al.</i>, 2015). </blockquote>
<blockquote class="tr_bq">
What the SCC’s <i>Carter</i> decision means with respect to autism is unclear. We are not in Belgium’s “very different medico-legal culture.” But in Canada autistics are subject to “very different” and profoundly lower standards than the court envisioned. This has consequences for autistics even if autism itself is not or does not become a condition for which assisted dying is granted. </blockquote>
<blockquote class="tr_bq">
Adults diagnosed as autistic disproportionately experience suicide, suicidality, and premature death (Lai & Baron-Cohen, 2015; Hirvikoski <i>et al</i>., 2015), plausibly as the predictable outcomes of being subject to unacceptably low standards. It remains to be seen how enduring intolerable suffering will be assessed and treated in these circumstances, which the SCC did not envision. The obvious solution, the only one consistent with the Charter, is to accord to autistics the universal scientific, medical, and ethical standards they are currently denied. So long as this does not happen, autistics in Canada do not fall under the overarching premise of the <i>Carter</i> decision. In all aspects of assisted dying, they will face hazardous, onerous, and unacceptable disadvantages. </blockquote>
<blockquote class="tr_bq">
<b>References </b> </blockquote>
<blockquote class="tr_bq">
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2015). Premature mortality in autism spectrum disorder. <i>The British Journal of Psychiatry</i>, pii: bjp.bp.114.160192 </blockquote>
<blockquote class="tr_bq">
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. <i>The Lancet Psychiatry, 2(11),</i> 1013-1027. </blockquote>
<blockquote class="tr_bq">
Lerner, B. H., & Caplan, A. L. (2015). Euthanasia in Belgium and the Netherlands: On a slippery slope? <i>JAMA Internal Medicine, 175, </i>1640-1. </blockquote>
<blockquote class="tr_bq">
Thienpont, L., Verhofstadt, M., Van Loon, T., Distelmans, W., Audenaert, K., & De Deyn, P. P. (2015). Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. <i>BMJ Open, 5(7), </i>e007454.<br />
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<i><span style="font-family: "arial" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">Submitted
to: </span><span style="background: white; font-family: "arial" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">External Panel on Options for a Legislative
Response </span><span style="background: white; font-family: "arial" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">to Carter v. Canada, </span><span style="font-family: "arial" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">November 23, 2015, </span></i><i style="font-family: Arial, sans-serif; font-size: 10pt; line-height: 115%;">by Michelle
Dawson, CETEDUM, University of Montreal </i></blockquote>
<br />
<b>Further notes </b><br />
<b><br /></b>
For more about autistics being denied basic standards in research, and some consequences of this, <a href="https://web.archive.org/web/20161018060119/https://www.autistica.org.uk/autism-history-dawson/">see my recent guest post for Autistica</a> on history, segregation, and autism. For the current complicated situation regarding assisted dying in Quebec, see recent <a href="http://www.cbc.ca/news/canada/montreal/quebec-end-of-life-care-1.3345572">update</a>.<br />
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<b>Postscript: </b>On Dec 3, the Canadian government asked the SCC <a href="http://www.cbc.ca/news/politics/liberal-doctor-assisted-death-supreme-1.3349565">for an additional six months</a> to respond to <i>Carter</i>. For further updates, see the comments.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-54193505110972960242012-04-12T11:57:00.007-05:002012-04-12T13:14:09.144-05:00Autistic in the UK<a href="http://2.bp.blogspot.com/-INU1H3gEP0E/T4cKefQrqEI/AAAAAAAAAUw/VtNDjz_rVlA/s1600/UK2012_manchester_monument.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://2.bp.blogspot.com/-INU1H3gEP0E/T4cKefQrqEI/AAAAAAAAAUw/VtNDjz_rVlA/s400/UK2012_manchester_monument.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5730560569756067906" /></a><br /><br />Before I forget how to blog again, some excerpts from a <a href=http://www.talkaboutautism.org.uk/page/liveevents/michelledawson.cfm>live Q & A</a> I did in the UK recently, while at the <a href=http://www.ioe.ac.uk/research/28033.html>Centre for Research in Autism and Education</a> in London. I've corrected one typo. It was very hard to do but the questions were excellent.<br /><br /><br /><strong>Darren Sharif:</strong><br /><br />Was research something you always felt you had been quite good at, statistics, numbers etc? And what support network did you have to start this job? <br /><br /><strong>Michelle Dawson: </strong><br /><br />No, I ran into research by accident--as I was trying to sort out legal issues. Then suddenly I had information I could really work with. Before that I had been totally discouraged from even looking at research--I was told that autistics could not understand research.<br /> <br />I haven't really had support, I just leveled a lot of criticism at a research group I took seriously and they offered me an affiliation. <br /><br /><strong>Peter: </strong><br /> <br />Hi Michelle, really interesting to hear your answers to the last questions. What sort of advice would you give to autistic people here in the UK who would like to get into research? <br /><br /><strong>Michelle Dawson: </strong><br /><br />My main advice is--read a lot of papers! Find out what you're interested in and what you can do well. You need a lot of critical thinking and it helps to not decide ahead of time what you should find.<br /><br />I also suggest reading the scientific literature involving the typical population to get an idea of the often higher standards there--and then use these higher standards to interpret the autism literature.<br /> <br />It is hard for me to give advice at the usual levels because I haven't ever been to university as a student. Still I hope I've shown that even an uneducated autistic can be useful in research, given the opportunity. <br /><br /><strong>Kate:</strong><br /> <br />What do you think about the links between research and government policy? I think we struggle to get government to fund support and interventions for children partly because they're not convinced of the benefits. What should we do about that? <br /><br /><strong>Michelle Dawson:</strong><br /><br />The problem has been the poor quality of autism intervention research, resulting in arguments based on a few studies of questionable quality. In my view, the solution is to ensure that only good quality--as this is defined for the typical population--intervention research is funded.<br /> <br />We should at this point know much more than we do, about how to help and how not to harm autistics. We should have 10 or more large, well-designed, multi-site RCTs like the one <a href=http://autismcrisis.blogspot.ca/2010/08/making-autism-research-history.html>Jonathan Green has conducted in the UK</a>. But we don't. So policy and so on is determined according to who is loudest and so on, rather than according to what might help autistics. <br /><br /><strong>Joe: </strong><br /><br />If you had the power to fund one new area of research what would it be and why? <br /><br /><strong>Michelle Dawson: </strong><br /><br />I've been asked that question many times in the UK and my answer is always that I would throw funding into Jonathan Green's work, simply because he is applying much higher standards to autistics in autism intervention research than has previously been the case.<br /> <br />This may seem like an odd choice, but the poor quality of the autism intervention literature is in my view a major problem that doesn't stay confined to how decisions are made about interventions, which is important enough in itself.<br /> <br />We don't know yet how far better quality research will go in making things better for autistics, and to what degree it will solve the problems so to speak, but it is something we must try. The effort to lower standards for autistics has been dominant and it is hard to imagine a better way to signal that autistics are worth less than nonautistics.<br /> <br />It is very fortunate that Jonathan Green and others, like Catherine Aldred, <a href=http://www.crd.york.ac.uk/prospero/display_record.asp?ID=CRD42011001349>have not gone along with this trend</a>, and instead are viewing autistics as deserving of the same standards as everyone else. And we know that these standards work for autistics. So this is why I would send them more funding if I could. <br /><br /><strong>Peter:</strong><br /><br />How do we support more autistics to become leading academics / scientists rather than purely the subject of research? What needs to change and are there any examples of where you think this is working well? <br /><br /><strong>Michelle Dawson: </strong><br /><br />First I think we have to stop discouraging autistics from being interested in research. I've been discouraged by pretty much every major advocacy group, for example, on every political "side."<br /> <br />Also, there has been a tendency to segregate autistics from science as usual--of saying that science doesn't really work on autistics so we must have some special model or we must have autism-specific standards.<br /> <br />In my view, there is no evidence to support this longstanding trend--instead the problem has been that via advocacy, autistics have been segregated from the standards and so on that we know must exist to protect and benefit nonautistics.<br /> <br />So currently there is the idea that while autistics can participate in research, we can only do so under certain models, which are, for example, far too sophisticated and elaborate for me.<br /> <br />The group in Montreal seems to work well because there is no such elaborate model. We just do science, and this is something that some autistics are really good at. Autistics and nonautistics work together as equals and it is no big deal. There is no need to adhere to some elaborate ideological model about how autistics and academics should work together. <br /><br /><strong>Jean-Paul: </strong><br /><br />Do you think autism researchers and autism advocates could and should worker closer together? <br /><br /><strong>Michelle Dawson:</strong><br /> <br />Since 1970 or before, advocacy (of various kinds) has been decisive in influencing the course of autism research. The question is whether this has been good for autistics. In many cases, I believe it hasn't been.<br /> <br />In part the responsibility lies on researchers who have used advocacy to prop up less than scientific (and less than ethical) views, theories, and practices.<br /> <br />I think it's very important that scientific and ethical standards not be lowered or discarded for autistics, and sadly there are a lot of demands via advocacy (from every direction) that this must happen.<br /> <br />I am really hoping for advocacy which demands higher standards of science and ethics for autistics, but this hasn't happened yet. Feel free to step in! <br /><br /><strong>Sammi:</strong> <br /> <br />Do you think the politics of the autism community gets in the way of progress sometimes? <br /><br /><strong>Michelle Dawson: </strong><br /><br />I think there is very strong evidence of how autism politics (on every "side") has harmed autistics.<br /> <br />The political process and political methods are important and they work, even if they look messy, but in autism they have dominated at the expense of scientific and ethical standards, and this has in my view harmed autistics, as it would for any other group. <br /><br /><br />There is more at the <a href=http://www.talkaboutautism.org.uk/page/liveevents/michelledawson.cfm>link</a>. The photo above was taken by Thomas Henderson on an iPad, also the one below, both in Manchester. A lot of London, including the taxis, looked familiar due to <a href=http://www.stephenwiltshire.co.uk/>Stephen Wiltshire's work</a>. My experience in the UK was excellent. That was entirely due to those many who bravely welcomed and helped me out, who were extraordinarily forgiving of my many limitations, and who provided a lot of productive discussion.<br /><br /><br /><a href="http://3.bp.blogspot.com/-jJ74w4rD34k/T4cSt9UmJEI/AAAAAAAAAU4/190zllennN0/s1600/UK2012_cabs.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://3.bp.blogspot.com/-jJ74w4rD34k/T4cSt9UmJEI/AAAAAAAAAU4/190zllennN0/s400/UK2012_cabs.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5730569631616607298" /></a>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-8424986433619436352012-04-09T11:14:00.010-05:002012-04-10T08:29:44.970-05:00The idiot savant storyIn a <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2012.04244.x/abstract">commentary epublished in March</a>, about savant syndrome in autism, Patricia Howlin wrote: <blockquote>In 1887 Langdon Down was the first to coin the term ‘idiot savant’</blockquote>Howlin and several co-authors, including Sir Michael Rutter, wrote in a <a href="http://rstb.royalsocietypublishing.org/content/364/1522/1359.full.pdf">2009 paper</a>:<blockquote><p>Down (1887) was the first to coin the term ‘idiot savant’</p></blockquote>Here are Pam Heaton and Gregory Wallace from <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.2004.t01-1-00284.x/abstract">a major 2004 review:</a><blockquote>The term ‘idiot-savant’ was first used by Down (1887)</blockquote>From <a href="http://onlinelibrary.wiley.com/doi/10.1111/1469-7610.00529/pdf">1999, Pam Heaton</a> again, as well as Linda Pring, Beate Hermelin, and others:<blockquote>The term "Idiot-Savants" was first used by Langdon Down in 1887</blockquote>Darold Treffert, often described as the authority on savants, has written accounts along these lines: <blockquote>However, the first specific description of savant syndrome took place in London in 1887 when Dr J. Langdon Down gave that year’s prestigious Lettsomian Lecture at the invitation of the Medical Society of London... In 1887, ‘idiot’ was an accepted classification for persons with an IQ below 25, and ‘savant’, or ‘knowledgeable person’, was derived from the French word savoir meaning ‘to know’. Down joined those words together and coined the term idiot savant by which the condition was generally known over the next century.</blockquote>That's from <a href="http://rstb.royalsocietypublishing.org/content/364/1522/1351.full.pdf">a 2009 paper</a>. There seems to be an impressive consensus in the literature that Down coined the term "idiot savant" in 1887 (<a href=http://books.google.ca/books/about/On_some_of_the_mental_affections_of_chil.html?id=SfRX_cNWJr8C&redir_esc=y>here is the source cited in all of the above</a>), a claim that Treffert has made since the late 1980s, and many others have followed suit.<br /><br />So far as I can tell, this consensus is wrong. Edouard Seguin, who died in 1880, is well known for having written about savants. He wrote about the famous pianist Blind Tom Wiggins, for instance, in a <a href="http://books.google.ca/books?hl=en&lr=&id=9uFb0xDxHV4C&oi=fnd&pg=PR7&dq=%22Idiocy:+and+its+Treatment+by+the+Physiological+Method&ots=LBT0n30VqL&sig=cf3bVTYS9jatlLEGsELItXjJwfA&redir_esc=y#v=onepage&q=%22Idiocy%3A%20and%20its%20Treatment%20by%20the%20Physiological%20Method&f=false">book published in 1866</a>. And in <a href="http://journals.lww.com/amjmedsci/Citation/1870/10000/Art__XXXIII__New_Facts_and_Remarks_concerning.33.aspx">a short 1870 paper</a>, he is quoted as using the term "idiot savant." Here it is (spelling from original): <blockquote>Among the wealthier classes, idiocy is not only oftener aggravated by accessory diseases, but also complicated with abnormal semi-capacities or disordered instincts, which produce heterogeneous types to an almost unlimited extent. It is from this class, almost exclusively, that we have musical, mathematical, architectural, and other varieties of the <em>idiot savant;</em> the useless protrusion of a single faculty, accompanied by a woful general impotence.</blockquote>Seguin's use of "idiot savant" did not pass unnoticed in the literature. For example, in <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2295366/pdf/brmedj04553-0005b.pdf?tool=pmcentrez">the BMJ in 1875</a>, George W. Grabham quotes and takes issue with Seguin's views (spelling from the original): <blockquote>A curious class may be termed that of the idiot "savans", in whom one or more faculties are amazingly developed, perhaps to the detriment of the rest. One has a marvellous power of acquiring languages and musical knowledge; another, great mechanical skill and original constructive ability; a third, though very childish, is no mean mental arithmetician; a fourth remembers all he reads; a fifth delights in dates; while a sixth can tell the time when awakened from sleep. General improvement has taken place in all these cases.<br /><br />Dr. Seguin, a well known authority on idiocy, has given the support of his pen to a theory "that idiocy is found in its simplest forms among the labouring classes, and that, among the wealthier classes, it is not only oftener aggravated by accessory diseases, but also complicated with abnormal semi-capacities or disordered instincts, which produce heterogeneous types to an almost unlimited extent. It is from this class almost exclusively that we have musical, mathematical, architectural, and other varieties of the idiot savant; useless protrusion of a single faculty, accompanied by a woeful general impotence". I am quite unable to agree with this view; my experience of many of these idiot "savans" proving them to have sprung from parents in humble circumstances, and leading me to believe them to have resulted in many instances from hereditary insanity.</blockquote>It's possible Seguin was not the first to use "idiot savant" but he does get this honor in <a href="http://www.oed.com/;jsessionid=E1A7530F8ADE466062E5094858044B3A?authRejection=true&url=%2Fviewdictionaryentry%2FEntry%2F263877">the online OED</a>, which quotes Seguin's 1870 paper but does not mention or quote Langdon Down.<br /><br />In a footnote, <a href=http://www.sciencedirect.com/science/article/pii/0732118X9500003Y>Spitz (1995)</a> provides a small trace of dissent, noting that Down himself made no claim, in 1887, to having coined "idiot savant" and indeed he seems to be using an existing term. Spitz did not try to find who did coin "idiot savant," but you can't blame Down for the false consensus. <br /><br />And it hardly matters, to current-day autistics, who exactly coined an obsolete term in the 1800s. Langdon Down and Edouard Seguin probably don't care about their <a href=http://en.wikipedia.org/wiki/H-index>h-indexes</a>. There are many vastly more important issues related to the term "idiot savant" and the human beings who were characterized this way, and the still-dominant view that strong autistic abilities are useless protrusions (recent example <a href=http://scalesstudy.wordpress.com/2012/03/25/a-week-in-march/>here</a>). <br /><br />But it does matter when telling an inaccurate story becomes the standard in the autism literature, over the course of 20 years or more. This is far from the only instance. And this is an especially easy story to verify (or not).<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br /><br /><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Developmental+Medicine+%26+Child+Neurology&rft_id=info%3Adoi%2F10.1111%2Fj.1469-8749.2012.04244.x&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Understanding+savant+skills+in+autism&rft.issn=00121622&rft.date=2012&rft.volume=&rft.issue=&rft.spage=0&rft.epage=0&rft.artnum=http%3A%2F%2Fdoi.wiley.com%2F10.1111%2Fj.1469-8749.2012.04244.x&rft.au=HOWLIN%2C+P.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CResearch+%2F+Scholarship%2CAutism%2C+Ethics%2C+History">HOWLIN, P. (2012). Understanding savant skills in autism <span style="font-style: italic;">Developmental Medicine & Child Neurology</span> DOI: <a rev="review" href="http://dx.doi.org/10.1111/j.1469-8749.2012.04244.x">10.1111/j.1469-8749.2012.04244.x</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=BMJ&rft_id=info%3Adoi%2F10.1136%2Fbmj.1.733.73-a&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Remarks+on+the+Orgin%2C+Varieties%2C+and+Termination+of+Idiocy&rft.issn=0959-8138&rft.date=1875&rft.volume=1&rft.issue=733&rft.spage=73&rft.epage=76&rft.artnum=http%3A%2F%2Fwww.bmj.com%2Fcgi%2Fdoi%2F10.1136%2Fbmj.1.733.73-a&rft.au=Grabham%2C+G.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CResearch+%2F+Scholarship%2CAutism%2C+Ethics%2C+History">Grabham, G. (1875). Remarks on the Orgin, Varieties, and Termination of Idiocy <span style="font-style: italic;">BMJ, 1</span> (733), 73-76 DOI: <a rev="review" href="http://dx.doi.org/10.1136/bmj.1.733.73-a">10.1136/bmj.1.733.73-a</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=American+Journal+of+the+Medical+Sciences&rft_id=info%3Aother%2F&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Art.+XXXIII.-New+Facts+and+Remarks+concerning+Idiocy%3A+being+a+Lecture+delivered+before+the+New+York+Medical+Journal+Association%2C+October+15%2C+1869&rft.issn=&rft.date=1870&rft.volume=59&rft.issue=129&rft.spage=518&rft.epage=519&rft.artnum=http%3A%2F%2Fjournals.lww.com%2Famjmedsci%2FCitation%2F1870%2F10000%2FArt__XXXIII__New_Facts_and_Remarks_concerning.33.aspx&rft.au=Seguin%2C+E.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CResearch+%2F+Scholarship%2CAutism%2C+Ethics%2C+History">Seguin, E. (1870). Art. XXXIII.-New Facts and Remarks concerning Idiocy: being a Lecture delivered before the New York Medical Journal Association, October 15, 1869 <span style="font-style: italic;">American Journal of the Medical Sciences, 59</span> (129), 518-519</span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-8802651418175512522011-01-03T19:00:00.007-05:002011-01-27T15:22:58.052-05:00Are autistic people lost in space?<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />In <a href="http://www.pnas.org/content/early/2010/12/13/1014076108.abstract">one short paper</a>, Elizabeth Pellicano and colleagues claim to demolish Simon Baron Cohen's <a href=http://www.autismresearchcentre.com/docs/papers/2006_BC_Neuropsychophamacology.pdf>systemizing account of autism</a>. They also conclude that autistics' strong visual search and <a href=http://www.ncbi.nlm.nih.gov/pubmed/20661300>probabilistic</a> <a href=http://www.ncbi.nlm.nih.gov/pubmed/20204919>learning</a> <a href=http://www.ncbi.nlm.nih.gov/pubmed/18763876>abilities</a> fail in large-scale space, ergo in the real world. <br /><br />The <a href="http://esciencenews.com/articles/2010/12/20/children.with.autism.lack.visual.skills.required.independence">press release</a> starts by declaring that autistic children "lack visual skills required for independence" and does not exaggerate the claims in the paper, which merit a lot of scrutiny. So bear with me, this is not going to be short. First what they did (and didn't do), then what they found, then what it means.<br /><br /><strong>1. What did they do? And what didn't they do?</strong><br /><br />Pellicano et al.'s purpose was to assess systemizing in autism by testing autistic visual search abilities in true-to-life large-scale space. And this research group has the set-up for it--a <a href=http://eis.bris.ac.uk/~psidg/download/SHG2008.pdf>room-size visual search task</a>. Except they ignored this possibility, instead choosing what they themselves call a test of "<a href=http://eis.bris.ac.uk/~psidg/download/SHG2008.pdf>non-visually guided foraging</a>." <br /><br />In other words, Pellicano et al. do not include visual search tasks at any scale, so you can't draw conclusions from their paper about visual search abilities in autism. <br /><br />From Figure 1, here is what Pellicano et al.'s foraging task looked like:<br /><br /><a href="http://4.bp.blogspot.com/_eiVXb9H5vmo/TRi7GNpxNzI/AAAAAAAAAPE/oPJ1mgRSZs8/s1600/Pellicano_foraging_2010.jpg"><img style="WIDTH: 400px; HEIGHT: 245px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5555395855779968818" border="0" alt="" src="http://4.bp.blogspot.com/_eiVXb9H5vmo/TRi7GNpxNzI/AAAAAAAAAPE/oPJ1mgRSZs8/s400/Pellicano_foraging_2010.jpg" /></a><br /><br />It took place in a 4m by 4m space arranged as shown. In two 20-trial blocks, 20 autistic and 20 nonautistic children (age ~11yrs) had to find which of 16 green floor lights, eight on each side of a midline, turned red when pressed. The children were not told that 80% of the concealed red targets were on one side of the room ("rich" side) with only 20% on the other ("sparse" side).<br /><br />The task instruction was to find the red target as quickly as possible. <br /><br />But search all you like, in this paper you will find no data about how quickly the participants found the targets. The researchers left out this available measure. They left out number of green lights hit before finding the red target. They left out how many first touches were on the "rich" vs "sparse" sides of the room. <br /><br />They left out almost every measure they previously deemed important to assess performance on foraging tasks in large-scale space (e.g. <a href=http://eis.bris.ac.uk/~psidg/download/SGH2005.pdf>here</a>, <a href=http://eis.bris.ac.uk/~psidg/download/SHG2008.pdf>here</a>, <a href=http://www.ncbi.nlm.nih.gov/pubmed/20438260>here</a>).<br /><br />They seem also to overlook their previous systemizing-relevant (you would think) finding of no male-female difference in performance on the same foraging task (experiment 2 <a href=http://www.ncbi.nlm.nih.gov/pubmed/20438260>here</a>). <br /><br />Another of their own <a href=http://eis.bris.ac.uk/~psidg/download/SGH2005.pdf>previous findings</a> is that children's foraging performance is related to their performance on the Corsi block task, a measure of spatial memory. Autistic children don't necessarily show a deficit on this task (e.g. <a href=http://www.ncbi.nlm.nih.gov/pubmed/20590722>here</a>), but in Pellicano et al., they did. If the goal wasn't simply to assess spatial memory, why not match groups on this ability? <br /><br /><strong>2. What did they find?</strong><br /><br />Their main measure was sensitivity to probability in the foraging task which, <a href=http://www.ncbi.nlm.nih.gov/pubmed/20438260>ignoring their previous work</a>, they defined as percent of visits to the rich side of the room. Here the authors report "no overall effect of group," never mind media reports (<a href=http://www.newscientist.com/article/dn19892-autistic-ability-falters-in-real-world.html>here is one</a>). There was an effect for the first block of trials, where autistics visited the rich side for 45.50% of their touches vs 61.50% for nonautistics. In the 2nd block, the figures were 62.25% and 63.25%. <br /><br />Two additional novel foraging measures involved total length of paths to the red target, per floor distance between green lights. These were assessed with highly sophisticated but conspicuously small-scale methods suited to eye-scanning and/or non-foraging pencil-and-paper tasks. So it doesn't matter how much time you take, or how much you have to twist and turn, or how many green lights you have to reach for. All that matters is length of path, and at this level the autistic children were judged significantly (a) less optimal and (b) less repetitive. Because you should ask, according to Pellicano et al., <em>less repetitive</em> means less systematic ergo is now yet another autistic deficit. <br /><br />The final foraging measure was total revisits to green lights, where the autistics had significantly more in the second but not the first block. One autistic child racked up a big chunk of the autistic revisits (more than 3 SDs above the group mean), which might indicate an atypical understanding of or interest in aspects of the task. There is no information about group differences minus the interesting outlier. <br /><br />The two non-foraging measures were the Corsi task where autistic children had a significant disadvantage, and an embedded figures task on which they performed significantly better than their controls (yes, interpreted as a global deficit, without evidence for same). Revisits--outlier included--correlated with the non-foraging measures in the autistic group. There is no information about these correlations for the nonautistic children or about any other correlations.<br /><br /><strong>3. What does it mean? </strong><br /><br />Well first, it's an interesting task, even if it's not a visual search task. <br /><br />But even if autistics totally failed (they didn't, and search all you want again, but you will find no rationale in this paper for the drop-off-a-cliff thresholds pushed by the authors), this task doesn't map easily onto the authors' sensational claims. These include that autistics can't find <a href=http://esciencenews.com/articles/2010/12/20/children.with.autism.lack.visual.skills.required.independence>"shoes in the bedroom, apples in a supermarket, or a favourite animal at the zoo"</a> ergo can't achieve independence. <br /><br />Of course I want a whole lot more data, or an excellent rationale (none is provided) for not reporting most of it. And numerous possibilities were overlooked. <br /><br />There's those other regularities in the distribution of red targets. There were only 40 trials, and each green light position was the target at least once. On the "sparse" side, each position would be the target exactly once (8 targets, 8 positions). The participants were not supposed to notice or be affected by this kind of regularity.<br /><br />No one knows how autistics would have performed if given accurate task instructions (to take the shortest path, as measured by the authors, to the target). Maybe someone else can bring up motor differences, which plausibly are relevant to this "true-to-life" task. And I wonder how clear, for autistics, the task instructions were with respect to revisits.<br /><br />Autistics should be notorious by now for noticing aspects of tasks that nonautistics don't (<a href=http://imfar.confex.com/imfar/2010/webprogram/Paper7015.html>fantastic example at IMFAR last year</a>), and for exploring more possibilities than nonautistics (examples <a href=http://www.ncbi.nlm.nih.gov/pubmed/20623440>here</a> and <a href=http://www.ncbi.nlm.nih.gov/pubmed/19913345>here</a>). Writing this off as a bad thing, as autistics being lost in space or some dire equivalent, is shortsighted to say the least. <br /><br />If you're paying attention, autistics' "less repetitive" and speculatively more exploratory behavior--more aspects of the array are interesting to autistics, more possibilities and probabilities are explored--in "large-scale" space is a predictable finding. There is no reason to trash as useless (or harmful, and Pellicano et al. go there) multiple replications of excellent autistic visual search and probabilistic learning performance. One genuine conclusion is that systemizing, as conceived by Pellicano et al., and <a href=http://www.autismresearchcentre.com/docs/papers/2006_BC_Neuropsychophamacology.pdf>also by Baron-Cohen</a>, is too rigid and limited a model to encompass how autistics atypically detect and explore environmental regularities.<br /><br /><br /><strong>Reference: </strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Proceedings+of+the+National+Academy+of+Sciences+of+the+United+States+of+America&rft_id=info%3Apmid%2F21173235&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Children+with+autism+are+neither+systematic+nor+optimal+foragers.&rft.issn=0027-8424&rft.date=2010&rft.volume=&rft.issue=&rft.spage=&rft.epage=&rft.artnum=&rft.au=Pellicano+E&rft.au=Smith+AD&rft.au=Cristino+F&rft.au=Hood+BM&rft.au=Briscoe+J&rft.au=Gilchrist+ID&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CAutism%2C+Ethics">Pellicano E, Smith AD, Cristino F, Hood BM, Briscoe J, & Gilchrist ID (2010). Children with autism are neither systematic nor optimal foragers. <span style="font-style: italic;">Proceedings of the National Academy of Sciences of the United States of America</span> PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/21173235">21173235</a></span><br /><br /><br /><strong>Postscript:</strong> You can find a large-scale space, true-to-life, real-world (and wonderful) embedded figures task performed by an autistic child <a href=http://www.jamesmw.com/wescott/1.htm>here</a>.<br /><br /><strong>Post-postscript:</strong> This post has been included in the <a href=http://drvitelli.typepad.com/providentia/2011/01/encephalon-edition-83.html>83rd edition of Encephalon</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-77928122557184093742011-01-03T10:19:00.006-05:002011-01-03T10:31:27.965-05:00Questions about higher education in the era of autism politicsStrange way to start the year. And maybe this recent search from the <a href="http://www.soton.ac.uk/mediacentre/news/2007/apr/07_59.shtml">University of Southampton</a> is actually unrelated to the university. On the other hand, in the current era of autism politics, it seems plausible to wonder whether this is part of someone's assignment or coursework or whatever.<br /><br /><a href="http://1.bp.blogspot.com/_eiVXb9H5vmo/TSHpK09CwJI/AAAAAAAAAPk/8D9p3X0HLKw/s1600/eibi_for_me_blog%2Breferral_u-southampton_2010.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 367px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5557979787374542994" border="0" alt="" src="http://1.bp.blogspot.com/_eiVXb9H5vmo/TSHpK09CwJI/AAAAAAAAAPk/8D9p3X0HLKw/s400/eibi_for_me_blog%2Breferral_u-southampton_2010.JPG" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />And if it is, is the question being asked about all autism researchers, or only autistic ones?Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-56762292880624469682010-10-10T19:54:00.014-05:002010-10-24T21:13:41.849-05:00Are autistic people natural born criminals?<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />Associations between autism and notorious violent crimes are easy to find--they seem almost automatic. <a href="http://www.autismwebsite.com/crimetimes/05c/w05cp13.htm">Here is one example</a>, <a href="http://findarticles.com/p/articles/mi_hb4345/is_6_35/ai_n29359232/">and another</a>, and <a href="http://blogs.discovermagazine.com/gnxp/2010/02/amy-bishop-and-lactose-intolerance/">one more</a>. There seems to be an <a href="http://www.amazon.com/Violent-Dangerous-Psychiatry-Theory-Applications-Treatment/dp/1608769526/">entire book on this theme</a>, though I haven't read it.<br /><br />In the scientific literature, you can find powerful deficit models of autism at work in predictions that autistics should disproportionately be violent and prone to criminal behavior. For decades now, examples and claims (just a few <a href="http://www.ncbi.nlm.nih.gov/pubmed/4075056">here</a>, <a href="http://www.ncbi.nlm.nih.gov/pubmed/3417810">here</a>, <a href="http://www.ncbi.nlm.nih.gov/pubmed/7794327">here</a>, <a href="http://www.autism.net.au/Downloads/Asperger%20syndrome%20from%20childhood%20into%20adulthood.pdf">here</a>) fitting this prediction have been highlighted, while the few dissenting views (e.g. <a href="http://www.ncbi.nlm.nih.gov/pubmed/1938780">here</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/7728374">here</a>) have had little effect.<br /><br />Then there's political expedience. Unless we receive the usual lobbied-for interventions, autistics will disproportionately display criminal behavior and wind up in jail--or so it is claimed. A few examples from the usual autism politics <a href="http://www.thestar.com/News/article/172461">here</a>, <a href="http://autismwomensnetwork.org/article/zakhquery-price-and-danger-incarcerating-our-youth">here</a>, <a href="http://www.timescolonist.com/health/care+about+therapy+kids+with+autism/3532816/story.html">here</a>.<br /><br />Kathrin Hippler and her colleagues deserve high praise for noticing how well-placed they were to investigate these kinds of popular claims. Their recent paper takes advantage of their access to information about the large group of individuals--177 of them--who are former patients from Hans Asperger's clinical practice in Vienna.<br /><br />Most (93%) of these former patients are male. All were assumed to score at least in the normal range of intelligence as children, but for most there are no recorded IQ scores. They were born between 1938 and 1979, and on average were diagnosed at age eight (range 3-21 years). In 2010 their average age would be about 50. It is unlikely that most of this cohort would have undergone the usual lobbied-for autism interventions as children.<br /><br />Hippler et al. obtained information from the Austrian Penal Register about all criminal convictions registered, as of 2002, in this cohort. They found 33 convictions for a total of 8 individuals, resulting in 23 "custodial sentences" ranging from 2-30 months and 11 fines.<br /><br />They also checked whether, compared to the general population, their cohort had a higher rate of newly-registered convictions for the years 1998-2002. Here is what they found:<blockquote>the average proportion of convictions found in our sample (1.30%) is very comparable to that in the general male population (1.25%)</blockquote>As to kinds of crimes:<br /><blockquote>By far the most common convictions in Asperger’s former patients were for property offences [...] Offences against life and physical integrity were rare.</blockquote>And while data for the general population were limited:<br /><blockquote>qualitative assessment of offence types in Asperger’s former patients suggests that they do not differ radically from those in the general public</blockquote>Because this point needs to be underlined, here is more from Hippler et al.'s discussion:<br /><blockquote>the findings from our study do not suggest an over-representation of certain offence types. In the case records spanning 22 years and 33 convictions, there were only three cases of bodily injury, one case of robbery and one case of violent and threatening behaviour.</blockquote>Again to their great credit, Hippler et al. also provide data broken down according to Asperger's system of diagnosis. The 177 former patients were divided into an AP group ("autistic psychopathology," N = 73) and an AF group ("features of autistic psychopathology," N = 104). <br /><br />Some guesswork is involved, but the AP group would fall under current criteria either for Asperger syndrome or the specific diagnosis of autism. Hippler et al. conservatively estimate one-third would be specific-autistic, but it's not difficult to find researchers who would guess a higher proportion (<a href=http://autismcrisis.blogspot.com/2009/12/1-in-86-prevalence-of-autism-among.html>here, for example</a>).<br /><br />While a minority of the AF group might meet Asperger syndrome criteria, according to Hippler et al., others might be PDD-NOS, or in the (nonautistic) broader autistic phenotype. The AFs are described as "former patients at the less extreme end of the spectrum" and were included by Hippler et al. because:<br /><blockquote>Asperger believed that ‘autistic psychopathy’ was a heritable condition blending into "normality", which is reflected in the case descriptions of these children in the sense that the core features were the same but symptoms were less severe or could be compensated for better.</blockquote>According to <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>near-universal assumptions</a>, it would be far better to be AF (less "severe" or "extreme") than AP. Transforming AP-types into AF-types is a major goal of the usual lobbied-for autism interventions. But Hippler et al. found that most of the registered criminal convictions in their cohort belonged not to the "more autistic" AP group but to the "less autistic or not autistic at all" AF group. <br /><br />Indeed, of the 33 convictions found registered as of 2002, only three convictions of two individuals were found in the AP group. The remaining 30 belong to six individuals in the AF group, with two in this group contributing 22 convictions. <br /><br />In the comparison with rates of newly-registered convictions in the general population, the AP rate was 0.6% while the AF rate was 1.7%. These figures are lower and higher, respectively, than for the general male population, while the AP rate is comparable to the general population, females included (0.7%).<br /><br />Hippler et al. provide a competent overview of the relevant literature (including <a href=http://www.ncbi.nlm.nih.gov/pubmed/17615427>this recent finding</a>), as well as a fair discussion of their study's limitations. Under the banner "Wider Implications," they write:<br /><blockquote>There is a public perception that individuals with mental health diagnoses in general, and Asperger’s syndrome in particular, present a threat to the general public. We contend that, based on the follow-up data from Asperger’s original cohort, as well as other studies, this perception is wrong.</blockquote>Even wider implications include the neglected question of how being regarded as just naturally violent and dangerous to others, as natural born criminals, <a href=http://autismcrisis.blogspot.com/2008/10/another-autistic-victory.html>has affected the outcomes of autistics</a>. <br /><br /><br /><strong>Reference:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+Autism+and+Developmental+Disorders&rft_id=info%3Adoi%2F10.1007%2Fs10803-009-0917-y&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Brief+Report%3A+No+Increase+in+Criminal+Convictions+in+Hans+Asperger%E2%80%99s+Original+Cohort&rft.issn=0162-3257&rft.date=2009&rft.volume=40&rft.issue=6&rft.spage=774&rft.epage=780&rft.artnum=http%3A%2F%2Fwww.springerlink.com%2Findex%2F10.1007%2Fs10803-009-0917-y&rft.au=Hippler%2C+K.&rft.au=Viding%2C+E.&rft.au=Klicpera%2C+C.&rft.au=Happ%C3%A9%2C+F.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CSocial+Science%2CAutism%2C+Ethics">Hippler, K., Viding, E., Klicpera, C., & Happé, F. (2009). Brief Report: No Increase in Criminal Convictions in Hans Asperger’s Original Cohort <span style="font-style: italic;">Journal of Autism and Developmental Disorders, 40</span> (6), 774-780 DOI: <a rev="review" href="http://dx.doi.org/10.1007/s10803-009-0917-y">10.1007/s10803-009-0917-y</a></span><br /><br /><br /><strong>Postscript:</strong> This post has been included in the <a href=http://traversingtherazor.wordpress.com/2010/10/25/scientia-pro-publica-43-loving-living-learning/>43rd edition of <em>Scientia Pro Publica</em></a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-77381042058611533612010-08-31T17:43:00.006-05:002010-09-27T12:26:21.010-05:00Are you high or low functioning? Examples from autism research<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />If you are autistic and ever venture <a href=http://autismcrisis.blogspot.com/2008/10/another-autistic-victory.html>or are pushed</a> into public, a near-certainty is that you will publicly be ranked and classified by total strangers. <br /><br />For example, you will be assigned to the "high end" or the "low end" of the autistic spectrum, according to whether you are claimed to have a good or bad outcome (<a href=http://ideas.blogs.nytimes.com/2009/09/23/in-praise-of-autism/#comment-25317>I've been claimed to have both</a>). Non-political observers may notice how ethically and scientifically problematic this is, but there are few discussions, formal or informal, in which autistics aren't automatically assigned "high-functioning" and "low-functioning" rankings as definitive and permanent aspects of ourselves: there are LFAs and then there are HFAs. <br /><br />If the whole area of autism were not so politicized, it might have long been seen as important to check the scientific basis for these ubiquitous rankings. It might even be seen as an ethical obligation. It might be noticed that there is something wrong with discarding and therefore dishonouring the contributions to research made by the countless autistic children and adults who have been recruited as participants in autism research, and without whom there would be no autism research at all. <br /><br />I've never been impressed by autism politics, on whatever "side," so I'll start with some basic information about levels of functioning as reported in autism research, then provide several examples pulled from some of the <a href=http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147>numerous papers</a> I've recently looked at. <br /><br /><strong>What does level of functioning mean in autism research?</strong><br /><br />In autism research, autistics' level of functioning is most often judged according to scores on specific tests of IQ (e.g., Wechsler) or developmental level (Mullen, Bayley, sometimes the Vineland) at a specific time. <br /><br />The reported threshold dividing "high" from "low" functioning ranges from 50 to 90--at least in papers I've read so far; the actual range might be even greater. Those are IQ or IQ-type scores with a mean of 100 and a standard deviation of 15. So the threshold, the line dividing "high" from "low" functioning in autism research, is almost three SDs wide. Fall into that impressive span, and you may be high or you may be low functioning, depending on who you ask. <br /><br />If 90 is the threshold, then about 25% of the entire population (autistic, nonautistic, everyone) is low-functioning. If the more common threshold of 85 is chosen, then about 16% of everyone is low-functioning. <br /><br />70 is the threshold often considered to be standard even if in reality, if you read the literature, the threshold varies dramatically. But there are different tests and within commonly-used tests there are different ways to set a threshold, even when the threshold is numerically set at 70. <br /><br />With this in mind, here are some examples.<br /><br /><strong>Example 1</strong><br /><br />In Farley et al. (2010) the threshold is indeed 70 and autistics with lower baseline (circa age 8yrs) IQs were excluded. As the authors write, "all participants had baseline IQs in the nonimpaired range." <br /><br />In fact the full-scale baseline IQs of autistics deemed to meet the 70 threshold, and included as participants, range down to 36. An IQ of 36 is near the current threshold for severe intellectual disability. An IQ of 36 (if you were under age ~4yrs) would exclude you from <a href=http://autismcrisis.blogspot.com/2007/03/intake-iq-in-lovaas-1987.html>Ivar Lovaas' famous ABA study</a>--you are too low-functioning. <br /><br />But in different circumstances, which are specified by Farley et al., a full-scale IQ of 36 can also be considered to grossly underestimate your abilities and to put you in a study of participants who would widely be ranked as high-functioning.<br /><br /><strong>Example 2</strong><br /><br />Klin et al. (2007) is another study where the autistic participants (ages 7-18yrs) are all considered high-functioning and the threshold is 70. In one of two samples, verbal, performance, and full-scale IQs run from 52 to 150. Then there are Vineland scores. While Vineland is a test of adaptive behavior, in autism research Vineland scores can also be used as measures of intelligence ergo level of functioning. <br /><br />Vineland composite scores in this sample range down to 25. Two of the Vineland domain scores range down to 20. In <a href=http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7768124>a recent population-based study</a> (ages 9-14yrs), an assigned Vineland score of 19 was used to represent profound intellectual disability. But in Klin et al., you can have a Vineland composite score of 25, or Vineland domain scores of 20, and you are high-functioning. You are in the same category as someone with a verbal IQ of 150.<br /><br /><strong>Example 3</strong><br /><br />In Akshoomoff et al. (2004), there is also a threshold of 70, but autistics falling on either side of this threshold are included then divided into lower and higher functioning groups. Performance IQ scores in the lower-functioning group range up to 128. That is not only higher than the individual scores of the entire higher-functioning group, it is higher than all but ~3% of the entire population. If a PIQ of 128 ranks you as low-functioning, as it does in Akshoomoff et al., then almost everyone is low-functioning.<br /><br /><strong>Example 4 </strong><br /><br />In view of the above it might seem wise to abandon the 70 threshold and try something completely different. Annaz et al. (2009) created high-functioning and low-functioning autism groups (ages 5-11yrs) by incorrectly using the CARS (Childhood Autism Rating Scale), which is supposed to be a measure of autism "severity." This study features two measures of intelligence, one verbal (British Picture Vocabulary Scale, a verbal IQ equivalent) and one non-verbal (a subtest from the British Ability Scales). <br /><br />One result is that you can have a verbal IQ of 62 and be classified as high-functioning, and a verbal IQ of 111 and be classified as low-functioning. <br /><br />The non-verbal measure is reported in age-equivalents only, but the two autistic groups are remarkably well-matched on age. And the mean non-verbal age equivalents are both (1) the same for the two autistic groups, and (2) very nearly the same as mean chronological age, again for the two autistic groups. <br /><br />In other words, another result is that both high- and low-functioning autistics here represent groups whose mean measured non-verbal intelligence is the same as the general population mean, and of course vice-versa. Setting aside possible differences in distribution, now everyone is both high- and low-functioning.<br /><br /><strong>Conditional examples 5 and 6 </strong><br /><br />This is a bit of a digression, but if you adhere to the common political or ideological prejudice that "Kanner's autism" is "classical autism" is "low-functioning autism" you are then required to achieve an IQ of over 140 (<a href=http://www.neurodiversity.com/library_kanner_1943.pdf>from Kanner's original 11</a>) or 150 (<a href=http://autismcrisis.blogspot.com/2007/02/verbatim-kanners-autism.html>from Kanner's 1956 follow-up</a>) to be ranked as high-functioning. That means you have to be better than the 99th percentile. <br /><strong><br />Now what?</strong><br /><br />The above doesn't nearly convey the arbitrariness in the existing autism literature. As I wrote, I've provided just a bunch of examples, among many others, you will find if you read a lot of papers. Also, I've left out entire major areas, like changes over time and results from deliberate comparisons between different tests of intelligence. <br /><br />While this was not intentional, the examples above might be construed as exploiting the atypically high variability characterizing individual autistics and in addition characterizing autistics as a group. Then the question is whether it serves the interests of autistics, and whether it advances autism research, to diminish, misrepresent, trivialize, denigrate, obscure, or deny this characteristic variability. <br /><br />And as usual, the above can be verified by reading the existing autism literature. If there are any factual errors, as is always possible, please let me know. <br /><br /><strong>Futher reading </strong><br /><br />The late Ivar Lovaas expressed his views about levels of functioning in autism in one of the major ABA manuals; this is quoted <a href=http://autismcrisis.blogspot.com/2008/06/verbatim-levels-of-functioning-in.html>here</a>. From a different point of view, <a href=http://chronicle.com/article/Autism-as-Academic-Paradigm/47033>this article</a> concisely applies ethical consideration to the issue of level of functioning, among others. In autism politics, the dimension of autism "severity" and the different dimension of "level of functioning" are often wrongly confused or conflated. You can find science-based information about autism "severity" <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>here</a> and <a href=http://autismcrisis.blogspot.com/2010/02/what-is-severe-autism.html>here</a>. <br /><br /><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+the+American+Academy+of+Child+and+Adolescent+Psychiatry&rft_id=info%3Apmid%2F15076269&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Outcome+classification+of+preschool+children+with+autism+spectrum+disorders+using+MRI+brain+measures.&rft.issn=0890-8567&rft.date=2004&rft.volume=43&rft.issue=3&rft.spage=349&rft.epage=57&rft.artnum=&rft.au=Akshoomoff+N&rft.au=Lord+C&rft.au=Lincoln+AJ&rft.au=Courchesne+RY&rft.au=Carper+RA&rft.au=Townsend+J&rft.au=Courchesne+E&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Akshoomoff N, Lord C, Lincoln AJ, Courchesne RY, Carper RA, Townsend J, & Courchesne E (2004). Outcome classification of preschool children with autism spectrum disorders using MRI brain measures. <span style="font-style: italic;">Journal of the American Academy of Child and Adolescent Psychiatry, 43</span> (3), 349-57 PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/15076269">15076269</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+experimental+child+psychology&rft_id=info%3Apmid%2F19193384&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=A+cross-syndrome+study+of+the+development+of+holistic+face+recognition+in+children+with+autism%2C+Down+syndrome%2C+and+Williams+syndrome.&rft.issn=0022-0965&rft.date=2009&rft.volume=102&rft.issue=4&rft.spage=456&rft.epage=86&rft.artnum=&rft.au=Annaz+D&rft.au=Karmiloff-Smith+A&rft.au=Johnson+MH&rft.au=Thomas+MS&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Annaz D, Karmiloff-Smith A, Johnson MH, & Thomas MS (2009). A cross-syndrome study of the development of holistic face recognition in children with autism, Down syndrome, and Williams syndrome. <span style="font-style: italic;">Journal of experimental child psychology, 102</span> (4), 456-86 PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/19193384">19193384</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Autism+research+%3A+official+journal+of+the+International+Society+for+Autism+Research&rft_id=info%3Apmid%2F19455645&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Twenty-year+outcome+for+individuals+with+autism+and+average+or+near-average+cognitive+abilities.&rft.issn=1939-3792&rft.date=2009&rft.volume=2&rft.issue=2&rft.spage=109&rft.epage=18&rft.artnum=&rft.au=Farley+MA&rft.au=McMahon+WM&rft.au=Fombonne+E&rft.au=Jenson+WR&rft.au=Miller+J&rft.au=Gardner+M&rft.au=Block+H&rft.au=Pingree+CB&rft.au=Ritvo+ER&rft.au=Ritvo+RA&rft.au=Coon+H&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Farley MA, McMahon WM, Fombonne E, Jenson WR, Miller J, Gardner M, Block H, Pingree CB, Ritvo ER, Ritvo RA, & Coon H (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. <span style="font-style: italic;">Autism research : official journal of the International Society for Autism Research, 2</span> (2), 109-18 PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/19455645">19455645</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+autism+and+developmental+disorders&rft_id=info%3Apmid%2F17146708&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Social+and+communication+abilities+and+disabilities+in+higher+functioning+individuals+with+autism+spectrum+disorders%3A+the+Vineland+and+the+ADOS.&rft.issn=0162-3257&rft.date=2007&rft.volume=37&rft.issue=4&rft.spage=748&rft.epage=59&rft.artnum=&rft.au=Klin+A&rft.au=Saulnier+CA&rft.au=Sparrow+SS&rft.au=Cicchetti+DV&rft.au=Volkmar+FR&rft.au=Lord+C&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Klin A, Saulnier CA, Sparrow SS, Cicchetti DV, Volkmar FR, & Lord C (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: the Vineland and the ADOS. <span style="font-style: italic;">Journal of autism and developmental disorders, 37</span> (4), 748-59 PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/17146708">17146708</a></span><br /><br /><br /><strong>Postscript:</strong> This post has been included in the <a href=http://www.sharpbrains.com/blog/2010/09/27/scientia-pro-publica-answers-to-28-popular-and-not-so-popular-questions/>40th edition of <em>Scientia Pro Publica</em></a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-90443081199851063172010-08-18T20:04:00.009-05:002010-08-23T05:42:11.563-05:00Making autism research history: The Preschool Autism Communication Trial<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />Some months ago, Jonathan Green and his colleagues simultaneously published (<a href=http://press.thelancet.com/autism.pdf>in the <em>Lancet</em></a>) and presented (<a href=http://imfar.confex.com/imfar/2010/webprogram/Paper6984.html>at IMFAR 2010</a>) their multi-site RCT of an early autism intervention. In conducting and reporting the Preschool Autism Communication Trial, they have made autism research history. They have done so simply by applying to autistics scientific standards that are <a href=http://www.consort-statement.org/>well-established in non-autism non-ABA areas</a>. The upshot is an autism early intervention trial whose results are worth serious consideration and which is unprecedented in this respect. <br /><br />Via the <a href=http://www.medicine.manchester.ac.uk/pact/>PACT website</a>, you can find the <em>Lancet</em> paper reporting the PACT RCT, the peer-reviewed PACT intervention "manual" (which refers to another, more detailed manual), the PACT RCT protocols, references for related papers including a 2004 pilot RCT, a list of investigators and funders, and so on. <br /><br />I've previously written about the PACT as an <a href=http://autismcrisis.blogspot.com/2009/07/anomaly-in-autism-intervention-research.html>anomaly in autism intervention research</a>. The PACT entails an early autism intervention that was not widely promoted as effective or essential before it was fairly tested. That is a first in the history of autism research. It may also be the largest RCT of any kind of autism intervention ever published (if I'm wrong, I'm sure someone will tell me). <br /><br />In short the PACT RCT is an internationally-registered multi-site trial of a manualized intervention targeting the parents of preschool (ages 2-5yrs) autistic children. The PACT intervention spans one year and involves 12 twice-monthly 2hr clinic-based sessions followed by 6 monthly sessions. Parents are expected to apply what they learn, in interacting with their autistic child, for half an hour per day. <br /><br />For the PACT RCT, 152 children who met criteria for the specific diagnosis of autism were randomly assigned to receive either the PACT intervention plus treatment as usual or TAU alone. PACT and TAU children were well-matched at intake across several measures, and finished well-matched in other treatments received. Parents were not as well-matched. A detailed description of the PACT intervention is <a href=http://www.medicine.manchester.ac.uk/pact/protocols/inverventionmanual.pdf>here</a>. <br /><br />Dr Green and colleagues were successful both in recruiting an unprecedentedly large number of preschool autistic children for an RCT--in fact, expectations for recruitment were exceeded--and in minimizing drop-outs. In the <em>Lancet</em>, you will find an outstandingly clear CONSORT flowchart of participants as well as an intention to treat analysis and mixed results. <br /><br />Results favouring the PACT group were mainly in the area of parent-child interaction, as assessed through videos. The PACT group also outperformed the TAU children in parent-reported vocabulary and social measures, results carefully downplayed by Green et al. due to the parents not being blinded to intervention status. Post-treatment-only measures of adaptive behaviour reported by teachers did not differ between groups. <br /><br />The main measure was the ADOS used as a scale, and here too there was no result. In my view, using the ADOS as the main measure is a major error but an informative one. The ADOS, as used here (awkward tweaks and all), has thresholds only and doesn't work like a scale. And where is the evidence that lower ADOS scores in very young autistic children in themselves lead to better eventual outcomes? On the other hand, the strong design of the PACT RCT is such that it calls into question <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>what exactly the ADOS is assessing</a>--a result which deserves a lot of attention.<br /><br />Using ADOS thresholds, 27% of the 146 children who completed their assigned treatment had migrated from the specific diagnosis of autism to the lower-threshold "ASD" category, while an additional 6% no longer met criteria for any autistic spectrum diagnosis. No group differences were found. These findings lend perspective to the <a href=http://autismcrisis.blogspot.com/2010/02/very-early-autism-intervention-early.html>widely-publicized diagnostic category results</a> from another <a href=http://extension.ucdavis.edu/unit/autism_spectrum_disorders/pdf/dawson_rogers.pdf>recent RCT</a> involving a small sample of much younger children receiving more than two years of intervention.<br /><br />As with all studies, it's possible to list a range of flaws, potential concerns, and caveats. The ADOS is not only wrongly used as a measure, it is incorrectly used to stratify the sample for randomization. The ADI-R is used in a slightly unconventional way, possibly to accommodate children who otherwise would be excluded by its limitations. There was no screening ergo no exclusion for genetic syndromes, which arguably makes the findings more difficult to interpret. There was poor agreement between raters for two of the three parent-child interaction measures, which in my view is fascinating and telling: nonautistic raters are not good at agreeing about what child initiation and shared attention consist of, when a child is autistic. If you look at the <em>Lancet</em> paper, depending on how your brain works, you should rapidly find at least one minor error in the data (I can't help it...). <br /><br />The PACT intervention itself has questionable aspects. The fundamental idea is sound: train parents to better respond to their autistic children's communication. But the PACT is a rigidly developmental six-step approach based on how nonautistics develop. In addition, and <a href=http://autismcrisis.blogspot.com/2010/02/very-early-autism-intervention-early.html>like so many other autism interventions</a>, the PACT imposes extreme rationing of information and materials. Everything is cleared and shut away except a few toys or items. Anything in which autistics regardless manage to show strong interest will be taken away and replaced with something less interesting. What this does to an autistic child's communication <a href=http://psych.wisc.edu/lang/pdf/Dawson_AutisticLearning.pdf>and learning</a> is not considered. The PACT explicitly requires every effort to identify and cater to the parents' different ways of learning, but no such consideration is extended to the autistic children. <br /><br />The above is a not-close-to-complete list of the PACT's strengths, many of them unique, and its weaknesses--which due to its strengths serve as important information for the future of autism intervention research. Because the trial is so strongly designed compared to the rest of the literature, it is that much more important to learn from and build on. This may not serve the interests of various lobby groups or service providers or political leaders or advocates, but it will serve the interests of autistics. Here is a suggestion from Dr Green and colleagues in the <em>Lancet</em>:<br /><blockquote>These findings suggest that the optimistic results from other studies should be reassessed.</blockquote>Yes--good experimental design means that you risk <a href=http://deevybee.blogspot.com/2010/08/three-ways-to-improve-cognitive-test.html>not having your biases confirmed</a>. But taking this risk is currently the only demonstrated way to fairly test interventions and treatments, and for this reason, the only way to conduct ethical research. <br /><br />There is a <em>Lancet</em> <a href=http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T1B-5049MGM-1&_user=10&_coverDate=06%2F25%2F2010&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=8a6c1874186db44fc3546ddf4b579904>editorial about the PACT RCT</a>, written by two NIH scientists. Here is one thing they point out:<br /><blockquote>Thus, in a field in which minimum study standards have made it difficult to even look for literature to answer what works for autism, this study is an achievement.</blockquote>Here is another, and they get the last word:<br /><blockquote>This study furthers the field by setting a new bar for the minimum standards of rigorous methodology needed in trials that have potentially far-reaching service and policy implications.</blockquote><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=The+Lancet&rft_id=info%3Adoi%2F10.1016%2FS0140-6736%2810%2960587-9&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Parent-mediated+communication-focused+treatment+in+children+with+autism+%28PACT%29%3A+a+randomised+controlled+trial&rft.issn=01406736&rft.date=2010&rft.volume=375&rft.issue=9732&rft.spage=2152&rft.epage=2160&rft.artnum=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0140673610605879&rft.au=Green%2C+J.&rft.au=Charman%2C+T.&rft.au=McConachie%2C+H.&rft.au=Aldred%2C+C.&rft.au=Slonims%2C+V.&rft.au=Howlin%2C+P.&rft.au=Le+Couteur%2C+A.&rft.au=Leadbitter%2C+K.&rft.au=Hudry%2C+K.&rft.au=Byford%2C+S.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., Le Couteur, A., Leadbitter, K., Hudry, K., & Byford, S. (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial <span style="font-style: italic;">The Lancet, 375</span> (9732), 2152-2160 DOI: <a rev="review" href="http://dx.doi.org/10.1016/S0140-6736(10)60587-9">10.1016/S0140-6736(10)60587-9</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=The+Lancet&rft_id=info%3Adoi%2F10.1016%2FS0140-6736%2810%2960757-X&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Testing+autism+interventions%3A+trials+and+tribulations&rft.issn=01406736&rft.date=2010&rft.volume=375&rft.issue=9732&rft.spage=2124&rft.epage=2125&rft.artnum=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS014067361060757X&rft.au=Spence%2C+S.&rft.au=Thurm%2C+A.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Spence, S., & Thurm, A. (2010). Testing autism interventions: trials and tribulations <span style="font-style: italic;">The Lancet, 375</span> (9732), 2124-2125 DOI: <a rev="review" href="http://dx.doi.org/10.1016/S0140-6736(10)60757-X">10.1016/S0140-6736(10)60757-X</a></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-50521875258861403602010-05-17T12:30:00.007-05:002010-06-07T13:34:35.921-05:00The circadian prison<span style="float: left; padding: 5px;"><a href="http://researchblogging.org/news/?p=1376"><img alt="This post was chosen as an Editor's Selection for ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb_editors-selection.png" style="border:0;"/></a></span><br />I had no idea my sleep-wake cycle was pathological until I saw a presentation a few years ago by the geneticist Thomas Bourgeron. One of his interests is clock genes in autism. In fact only by speaking with him did it dawn on me that I lack a circadian rhythm.<br /><br />As it turns out, autistics are considered to have <a href=http://www.plosgenetics.org/article/info:doi%2F10.1371%2Fjournal.pgen.1000040>circadian clocks "gone bad."</a> Two reviews (Bourgeron, 2007; Glickman, 2010) cover the evidence with respect to autism and circadian rhythms, most of it in the direction of comprehensive atypicalities. Glickman (2010) summarizes the problem: <br /><blockquote>Disturbed sleep-wake patterns and abnormal hormone profiles in children with autism suggest an underlying impairment of the circadian timing system.</blockquote>And autistic children's bad timing, when it comes to sleeping and waking, is considered disruptive or worse, both to themselves and their sleep-deprived families. Bourgeron (2007) raises the further concern that typical sleep-wake patterns are essential for "appropriate" development, for the functioning of memory, and so on. Apparently there is nothing good about autistics' bad circadian clocks. <br /><br />Autistics whose sleep-wake cycles carry on independently from environmental and social cues are said to be "freerunning." My form of freerunning is extreme. I can sleep whenever I want--a few hours here, twelve hours there, as necessary, no matter the time of day or night. I enjoy sunlight but its absence has no effect on my mood, or on my sleep. I can work through nights, no problem, and shift to days in a blink. I've never suffered through jet lag. And so on. Until I ran into Bourgeron I had no idea this was considered pathological, at least in an autistic. <br /><br />The usual response to freerunning in autism is to see this as an autism-related sleep disorder. There is very preliminary evidence that freerunning autistics can be successfully treated with melatonin. Bourgeron (2007) refers to a <a href=http://www.ncbi.nlm.nih.gov/pubmed/11186124>short case study</a> about an autistic whose free-running was remediated by melatonin treatment. <br /><br />Of course nonautistics take melatonin too. They put themselves through sleep hygiene routines and they go to <a href=http://opinionator.blogs.nytimes.com/2010/04/19/sleeping-or-not-by-the-wrong-clock/?src=me&ref=general>sleep clinics</a> in droves. They suffer terribly from shift work and jet lag, and inadequate efforts to eradicate this suffering are everywhere, from <a href=http://news.bbc.co.uk/2/hi/health/7760105.stm>new drugs</a> to <a href=http://www.economist.com/blogs/gulliver/2010/05/jet-lag_remedies>new iPhone apps</a>. <br /><br />There is an enormous market for products and services that can treat individuals who stray from the proper expected sleep-wake cycle. Remarkably, the goal is never to free people from their circadian prisons but to <a href=http://opinionator.blogs.nytimes.com/2010/04/19/sleeping-or-not-by-the-wrong-clock/?src=me&ref=general>return them there and keep them there</a>. The schedule may be changed, with effort, but the prison remains the same. <br /><br />The next time I spoke with Bourgeron, I told him there should be a sort of anti-melatonin which would allow people to freerun like me, ergo avoiding the ills of jet lag, shift work, and what-all. It seems possible no one has seriously thought of this. <br /><br />I suggested the anti-melatonin idea to some nonautistic colleagues. They burst into stories about destroyed careers, disrupted lives. In constrast with autistics like me, my colleagues have perfectly "good" circadian clocks--which turn out to be incompatible with their challenging lives. They suffered, for being normally chained to their normal circadian rhythms. <br /><br />If there was a pill that could give them my very dysfunctional clock so they could freerun to the extreme, they would buy it in bulk. But there isn't. Instead there is the assumption that everyone has to live in a circadian prison.<br /><br />Glickman (2010) speculates that some autistics' failure to chain our sleep-wake cycles to environmental cues (you can find information about entrainment, as this process is called, <a href=http://scienceblogs.com/clock/2009/07/clock_tutorial_6_to_entrain_or_3.php>here</a>) may arise from our atypical perception. My totally wild guess might be that an extreme freerunning phenotype in autism may be contributed to in part by <a href=http://www.informaworld.com/smpp/content~content=a781211541&db=all>cognitive versatility</a> in autism, which would result in perceived environmental cues affecting sleep-wake cycles in an <a href=http://www.traininautism.com/Mottron/2006%20Enhanced%20perceptual%20funct.%20JADD.pdf>optional rather than mandatory way</a>. <br /><br /><a href=http://scienceblogs.com/clock/>The renowned Bora Zivkovic</a>, who unlike me knows all about circadian clocks, <a href=http://scienceblogs.com/clock/2010/04/evolutionary_medicine_does_rei.php>recently wrote</a> that--unlike me--typical people have "have complex circadian systems that are easy to get out of whack" with dire consequences:<br /><blockquote>In the state of almost permanent jet-lag that many of us live in, a lot of things go wrong. We get sleeping disorders, eating disorders, obesity, compromised immunity leading to cancer, problems with reproduction, increase in psychiatric problems, the Seasonal Affective Disorder, prevalence of stomach ulcers and breast cancer in night-shift nurses, etc.</blockquote>BoraZ was writing enviously about reindeer who live with drastic changes of season yet have escaped this kind of misery, possibly by having a "low-amplitude" clock. They just stroll out of their circadian prisons, whenever it's adapative. How can poor suffering human beings do this, is the question--finally. It's a very good question. <br /><br /><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Cold+Spring+Harbor+Symposia+on+Quantitative+Biology&rft_id=info%3Adoi%2F10.1101%2Fsqb.2007.72.020&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=The+Possible+Interplay+of+Synaptic+and+Clock+Genes+in+Autism+Spectrum+Disorders&rft.issn=0091-7451&rft.date=2007&rft.volume=72&rft.issue=1&rft.spage=645&rft.epage=654&rft.artnum=http%3A%2F%2Fwww.cshl-symposium.org%2Fdoi%2Fabs%2F10.1101%2Fsqb.2007.72.020&rft.au=Bourgeron%2C+T.&rfe_dat=bpr3.included=1;bpr3.tags=Biology%2CClinical+Research%2CPsychology%2CHealth%2CNeuroscience%2CAutism%2C+Ethics">Bourgeron, T. (2007). The Possible Interplay of Synaptic and Clock Genes in Autism Spectrum Disorders <span style="font-style: italic;">Cold Spring Harbor Symposia on Quantitative Biology, 72</span> (1), 645-654 DOI: <a rev="review" href="http://dx.doi.org/10.1101/sqb.2007.72.020">10.1101/sqb.2007.72.020</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Neuroscience+%26+Biobehavioral+Reviews&rft_id=info%3Adoi%2F10.1016%2Fj.neubiorev.2009.11.017&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Circadian+rhythms+and+sleep+in+children+with+autism&rft.issn=01497634&rft.date=2010&rft.volume=34&rft.issue=5&rft.spage=755&rft.epage=768&rft.artnum=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0149763409001833&rft.au=Glickman%2C+G.&rfe_dat=bpr3.included=1;bpr3.tags=Biology%2CClinical+Research%2CPsychology%2CHealth%2CNeuroscience%2CAutism%2C+Ethics">Glickman, G. (2010). Circadian rhythms and sleep in children with autism <span style="font-style: italic;">Neuroscience & Biobehavioral Reviews, 34</span> (5), 755-768 DOI: <a rev="review" href="http://dx.doi.org/10.1016/j.neubiorev.2009.11.017">10.1016/j.neubiorev.2009.11.017</a></span><br /><br /><br /><strong>Postscript:</strong> This post has been included in the <a href=http://blog.revealedsingularity.net/post/2010/06/07/scientia-pro-publica-32-biology-overload>32nd edition of <em>Scientia Pro Publica</em></a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-37654740967574157312010-02-17T14:02:00.008-05:002010-03-07T09:14:16.165-05:00Oxytocin versus autism: A cure for altruism<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />The widespread message arising from <a href=http://www.pnas.org/content/early/2010/02/05/0910249107.abstract>Andari et al. (in press)</a> is that the hormone oxytocin "<a href=http://news.sciencemag.org/sciencenow/2010/02/autism.html>may be a powerful weapon in fighting autism</a>" or words to that effect. <br /><br />The heart of this study is a computer game version of catch which appears to involve four human players. When a player is thrown the ball, he must then throw it to another player of his choice. Every time a player receives the ball, he receives a bit of money.<br /><br />In Andari et al. (in press), small groups of autistic and nonautistic adults ("P") individually play this game with three strangers ("A" "B" "C"). Much is done to persuade the autistic and nonautistic participants that the strangers, who in fact are elaborately programmed, are actual, present, proximate (in adjacent booths), decision-making human beings. <br /><br />The three strangers start by equally distributing the ball to the other players. Then the elaborate program kicks in: A and C increasingly favour one player (P and B, respectively) while shunning the others. B's behaviour does not change.<br /><br />In a prototypical display of us-vs-them thinking, the nonautistic Ps responded by ganging up with A to reap the social and monetary gains of a close alliance founded on the exclusion of half the players. <br /><br />The autistic Ps in contrast displayed no such selfish and discriminatory behaviour. They continued to throw the ball to the other players in equal proportion, ignoring their self-interest in favour of keeping all players equally included. <br /><br />Further, subjective ratings of the other players revealed that the autistic Ps did not have the kinds of biases that are routinely called hypocrisy. They did not judge C, who shared the most with B, as worse or less trustworthy than A, who shared the most with themselves. <br /><br />According to Andari et al. (in press), autistics "cannot understand or engage in social situations," as evidenced by autistics' outstandingly altruistic performance in this game. It is this profound social deficit, this altruistic autistic behaviour, that was targeted for treatment. <br /><br />And indeed, the treatment was successful. Autistics randomly administered a nasal mist containing oxytocin, rather than a saline placebo, significantly improved. They became willing to work with one of the players in an effort to shun and discriminate against the other two, and thereby get more than their fair share of money and attention. They became willing to see the player who shared with them as good and trustworthy, and the player who shared with someone else as bad and untrustworthy. They learned and displayed selfishness and hypocrisy and us-vs-them thinking. Their objectivity, fairness, and altruism were--temporarily--cured. <br /><br />Then this finding was replicated in a second small group of autistic adults who performed the same task but without monetary rewards. <br /><br />Success! Cue the avalanche of blogging and media stories. <a href=http://scienceblogs.com/notrocketscience/2010/02/can_a_sniff_of_oxytocin_improve_the_social_skills_of_autisti.php>Uta Frith says</a>, "This could be revolutionary."<br /><br />There is more to Andari et al. (in press), which also reports on two tasks involving face images, about which a few quick notes:<br /><blockquote>1. There is little ecological evidence that autistics avoid face images or do not make eye contact with face images. <br /><br />2. Numerous other studies (a few examples <a href=http://www.ncbi.nlm.nih.gov/pubmed/12120862>here</a>, <a href=http://www.ncbi.nlm.nih.gov/pubmed/16327784>here</a>, <a href=http://www.ncbi.nlm.nih.gov/pubmed/16460220>here</a>, <a href=http://www.ncbi.nlm.nih.gov/pubmed/16402154>here</a>) which feature stronger designs (e.g., use of fixation crosses) have found typical duration and distribution of visual fixations to human face images, and/or typical attention to the eye area, in autistics. <br /><br />3. For the nonautistic participants, the reported total visual fixation time to the face images--the crucial measure--well exceeds the total exposure time (both tasks), which has me, for one, scratching my head. <br /><br />4. As yet there is no evidence that the reported oxytocin-related measured changes in visual fixation times to face images would overall be more beneficial than harmful to autistics. <br /><br />5. In other studies (examples <a href=http://www.ncbi.nlm.nih.gov/pubmed/19530215>here</a> and <a href=http://www.ncbi.nlm.nih.gov/pubmed/19840062>here</a>) faster saccades and shorter visual fixation times, presumed by Andari et al. (in press) to be a very bad thing, have been associated with enhanced performance in autistics.</blockquote> All this too is telling in its way, but it cannot equal the reported spectacular findings with respect to autism and altruism. In this respect Andari et al. (in press), even with its obvious limitations in design, is an enormously valuable paper. It has much to reveal about how autistics are regarded, and about the nature and consequences of the fight against autism. <br /><br />For more about us-vs-them thinking in autistics and nonautistics, I recommend <a href=http://www.marginalrevolution.com/>Tyler Cowen's</a> prescient book, <a href=http://www.amazon.com/exec/obidos/ASIN/0525951237>Create Your Own Economy</a>, as well as <a href=http://www.youtube.com/watch?v=B6rd1qLgdA4>this related video</a>. <br /><br />Interpretations of Andari et al. (in press) which in no way resemble the above can be found <a href=http://www.washingtonpost.com/wp-dyn/content/article/2010/02/15/AR2010021501984.html>here</a>, <a href=http://news.sciencemag.org/sciencenow/2010/02/autism.html>here</a>, and <a href=http://scienceblogs.com/notrocketscience/2010/02/can_a_sniff_of_oxytocin_improve_the_social_skills_of_autisti.php>here</a>. <br /><br /><br /><strong>Reference:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Proceedings+of+the+National+Academy+of+Sciences&rft_id=info%3Adoi%2F10.1073%2Fpnas.0910249107&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Promoting+social+behavior+with+oxytocin+in+high-functioning+autism+spectrum+disorders&rft.issn=0027-8424&rft.date=2010&rft.volume=&rft.issue=&rft.spage=&rft.epage=&rft.artnum=http%3A%2F%2Fwww.pnas.org%2Fcgi%2Fdoi%2F10.1073%2Fpnas.0910249107&rft.au=Andari%2C+E.&rft.au=Duhamel%2C+J.&rft.au=Zalla%2C+T.&rft.au=Herbrecht%2C+E.&rft.au=Leboyer%2C+M.&rft.au=Sirigu%2C+A.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics%2C+Oxytocin">Andari, E., Duhamel, J., Zalla, T., Herbrecht, E., Leboyer, M., & Sirigu, A. (2010). Promoting social behavior with oxytocin in high-functioning autism spectrum disorders <span style="font-style: italic;">Proceedings of the National Academy of Sciences</span> DOI: <a rev="review" href="http://dx.doi.org/10.1073/pnas.0910249107">10.1073/pnas.0910249107</a></span><br /><br /><br /><strong>Postscript:</strong> This post has been included in the <a href=http://blogs.nature.com/scurry/2010/03/01/scientia-pro-publica-22>22nd edition of <i>Scientia Pro Publica</i></a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-23256225603069607442010-02-12T17:36:00.006-05:002010-02-16T11:01:27.952-05:00What is severe autism?<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />We have to wait, patiently, for the DSM-V people to cough up their system for <a href=http://autismcrisis.blogspot.com/2010/02/proposed-new-autism-criteria-dsm-v.html>ranking and classifying all autistics</a> according autism "severity." In the meantime, some recently reported data are worth mulling over. <br /><br />First, <a href=http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neurodevelopmental-Disorders-Work-Group-Report.aspx>here</a> is the most recent unofficial DSM-V autism "severity" ranking-system proposal, and <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>here</a> is my response, including information about instruments commonly claimed to measure autism "severity." The current official DSM-V void in this area can be located <a href=http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#>here</a>. <br /><br />An increasingly prominent measure of autism "severity" is the Social Responsiveness Scale. <a href=http://www.ncbi.nlm.nih.gov/pubmed/10706343>Developed by John Constantino</a>, it now exists in different age-range versions. Its purpose encompasses quantifying what are presumed to be autistic traits, from none on up, across the full range of humanity. <br /><br />The SRS is a 65-item questionaire most often filled out by parents or teachers, whose ratings classify children according to "<a href=http://www.ncbi.nlm.nih.gov/pubmed/18030089>severity of autistic symptomology</a>." Higher scores, above an established threshold, indicate greater autism "severity," and are therefore considered worse. <br /><br />In a recently epublished high-profile paper (Roberts et al., in press), SRS scores were reported for 25 autistic children who were recruited then divided into two groups according to performance on a popular test of language abilities. <br /><br />The children were about 10 years old. Sixteen autistic children classified as non-language-impaired achieved an average language ability score of ~100, right at the mean for the administered test. In contrast, nine autistic children classified as language-impaired scored ~65, more than two standard deviations lower. <br /><br />I'm going to ignore the main purpose of this <a href=http://neuroskeptic.blogspot.com/2009/12/war-on-interesting.html>interesting</a> study, which used magnetoencephalography to compare auditory evoked responses in autistics and nonautistics. Instead I'll concentrate on how this divided sample of autistic children was characterized. <br /><br />Apart from language scores, the authors reported what could be considered verbal and performance intelligence, as per indexes from the latest child version of the Wechsler scales. Here the non-language-impaired autistic children scored significantly higher, with ~20-point and ~16-point advantages, respectively, over the language-impaired autistic group. <br /><br />As I wrote above, Roberts et al. (in press) also reported SRS scores, described here as "dimensional symptom severity ratings."<br /><br />SRS raw scores are commonly used in research, but the SRS has also been standardized, providing T-scores which account for variables such as gender and differences between raters (e.g. parents vs teachers). T-scores are standard scores with a mean of 50 and a standard deviation of 10. <br /><br />While the SRS is not yet considered a diagnostic instrument, a T-score of 60, one SD above the mean, is currently the SRS-based cut-off for an autistic spectrum diagnosis. Standard scores from 60 to 75 currently indicate SRS-based "mild to moderate" autism; 76 or higher is the SRS-based "severe" autism range. <br /><br />As might be predicted, the two autistic groups in Roberts et al. (in press) differed significantly on SRS T-scores; that is, they differed on autism "severity." One group scored on average 70.89, falling into the "mild to moderate" range. The other scored 81.44, a full standard deviation higher, and crossed the threshold into "severe" autism. <br /><br />As wouldn't be predicted at all, the non-language-impaired autistics, who had advantages not only in language but on measures of intelligence, were the "severe" autistics, while the language-impaired children were the "mild to moderate" ones. <br /><br />My wild guess is that if an autism intervention was shown in fair tests to consistently produce a reduction in SRS scores of a full standard deviation, and what's more, transported groups--however small--of autistic children from the "severe" to the "mild to moderate" SRS range, this would be considered tremendous progress. <br /><br />The sample of autistic children in Roberts et al. (in press) is of course very small, as is charateristic of the bulk of the autism literature, and much can happen within such small sample. But these data <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>aren't inconsistent with numerous other existing reports</a>, and deserve at least a look while we wait, patiently, for the DSM-V people to proclaim on autism "severity." <br /><br />You can find an uncritical short blurb about the SRS, which used to be called the "Social Reciprocity Scale," <a href=http://www.iancommunity.org/cs/ian_research_questions/social_responsiveness_scale_srs>here</a>, and a more extensive, critical description <a href=http://psych.wisc.edu/lang/pdf/gernsbacher_reciprocity.pdf>here</a>.<br /><br />Many thanks to Jennifer Stevenson for (patiently) answering my questions about the SRS. Any factual errors are entirely mine and should you find any, you should alert me immediately. <br /><br /><br /><strong>Reference:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Autism+research+%3A+official+journal+of+the+International+Society+for+Autism+Research&rft_id=info%3Apmid%2F20063319&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=MEG+detection+of+delayed+auditory+evoked+responses+in+autism+spectrum+disorders%3A+towards+an+imaging+biomarker+for+autism.&rft.issn=1939-3792&rft.date=2010&rft.volume=&rft.issue=&rft.spage=&rft.epage=&rft.artnum=&rft.au=Roberts+TP&rft.au=Khan+SY&rft.au=Rey+M&rft.au=Monroe+JF&rft.au=Cannon+K&rft.au=Blaskey+L&rft.au=Woldoff+S&rft.au=Qasmieh+S&rft.au=Gandal+M&rft.au=Schmidt+GL&rft.au=Zarnow+DM&rft.au=Levy+SE&rft.au=Edgar+JC&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Roberts TP, Khan SY, Rey M, Monroe JF, Cannon K, Blaskey L, Woldoff S, Qasmieh S, Gandal M, Schmidt GL, Zarnow DM, Levy SE, & Edgar JC (2010). MEG detection of delayed auditory evoked responses in autism spectrum disorders: towards an imaging biomarker for autism. <span style="font-style: italic;">Autism research : official journal of the International Society for Autism Research</span> PMID: <a rev="review" href="http://www.ncbi.nlm.nih.gov/pubmed/20063319">20063319</a></span><br /><br /><br /><strong>Postscript</strong>: This post has been included in the <a href=http://scienceblogs.com/grrlscientist/2010/02/scientia_pro_publica_21.php>21st edition of <em>Scientia Pro Publica</em></a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-16923856345617399152010-02-10T17:03:00.013-05:002010-02-11T12:58:19.721-05:00Proposed new autism criteria: the DSM-V<a href=http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#>Here they are</a> and here are ten off-the-cuff thoughts:<br /><br />1. The most sit-up-and-take-notice change is the total removal of Rett syndrome from the DSM. It is gone. The DSM-V people are saying, "genetic syndromes don't belong in our book," or words to that effect, and I agree. <br /><br />2. Indeed the vast majority of named neurodevelopmental disabilities do not appear in the DSM, past, present, or future. This raises the question of why autism is there. Rett's being excluded is not going to immediately result in Rett's individuals being catastrophically deprived of recognition or assistance. Instead it may result in these individuals being regarded more accurately, to their great benefit. Removing autism from the DSM would have the same beneficial effect. <br /><br />3. Another change to grapple with: CDD (Childhood Disintegrative Disorder) is now lumped in with autism, which in turn has a single vaguely phrased onset criterion. To cover CDD (Volkmar et al., 2005), that criterion will have to cover onset at age 5 (fairly common in CDD) and up to age nine (rare, but happens). <br /><br />4. In addition, autism and CDD have very different cognitive profiles. This is one of many ways in which the DSM-V, even more than its predecessor, is running away from the productive and beneficial--to autistics--notion of autism as a cognitive phenotype. <br /><br />5. The headline-making but most predictable--and most predictably responded to--change is the loss of Asperger's and PDD-NOS, <em>which have both always been considered part of the autistic spectrum</em>, as distinct-from-autism diagnoses. Whatever their shortcomings, the loss of these diagnoses is another signal that autism is, officially and more so than ever, merely a series of deficits in overt typical behaviour. <br /><br />6. At the very least, the DSM-V strongly discourages any view of autism as an atypical cognitive phenotype involving relative (to nonautistics) cognitive strengths and weaknesses. <br /><br />7. The changed criteria, which collapse the DSM-IV social and communication domains, overlook any role for <a href=http://psych.wisc.edu/lang/pdf/Gernsbacher_EarlyOral-Manual.pdf>manual and oral motor abilities in these two areas</a>. And whose definition of the now-mandatory social reciprocity criterion will prevail? Here is <a href=http://ajp.psychiatryonline.org/cgi/content/full/157/12/2043>John Constantino's</a> <a href=http://psych.wisc.edu/lang/pdf/gernsbacher_reciprocity.pdf>one-way-street</a> definition: <br /><blockquote>Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others.</blockquote> The closer-to-equal time, so to speak, now granted the previously-relegated RIRB (restricted interests and repetitive behaviours) domain could be seen as progress, ditto the disappearance of the "nonfunctional" assumption. But autistics will no longer have DSM-IV unusually focused and intense interests (a strength), we will instead be pathologically fixated. <br /><br />8. The vagueness and subjectivity of the criteria should later be elaborated on with explanatory text which may add or subtract clarity. And the highly-publicized DSM-V effort to rank and classify all autistics <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>according to a rigid hierarchy of "severity"</a> is as yet missing. How the DSM-V will handle aspects of the by-far most important distinction within the autistic spectrum--the idiopathic vs etiological autism distinction (and see genetic syndromes, above)--remains to be seen.<br /><br />9. While the DSM-V has enormous political clout, what might change in actual diagnostic practices is unclear. Clinicians and entities currently employing anything-goes or free-for-all and/or expedient-type standards are unlikely to change in this respect. And in many ways DSM-V autism is autism altered to conform to the current "gold-standard" autism diagnostic instruments (see the role of Catherine Lord in both), whose predominance, weaknesses and limitations have come to determine what autism is and isn't. <br /><br />10. Organizations which (a) have little use for basic autism research (the kind I'm involved in) or actually oppose it; and (b) promote political views of autism, including that more services are always better--will likely be happy with the DSM-V changes. You can see ASAN fulfill this prediction <a href=http://www.newscientist.com/article/dn18508-psychiatrys-draft-new-bible-goes-online.html>here</a>. <br /><br /><br /><strong>Reference:</strong><br /><br />Volkmar, F.R, Koenig, K., & State, M. (2005). Childhood Disintegrative Disorder. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), <em>Handbook of Autism and Pervasive Developmental Disorders </em>. Hoboken, NJ: Wiley.<br /><br /><br /><strong>Postscript:</strong> Another view of the new autism criteria is <a href=http://autistscorner.blogspot.com/2010/02/dsm-v-draft-posted-online.html>here</a>. An overview of the proposed DSM-V in many areas is <a href=http://www.mindhacks.com/blog/2010/02/the_draft_of_the_new.html>here</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-48298669530807986282010-02-07T09:36:00.006-05:002010-02-07T16:52:33.246-05:00Very early autism intervention: the Early Start Denver Model<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />Early autism intervention research carries consequences for all autistics, and for a lot of nonautistics as well. <a href=http://extension.ucdavis.edu/unit/autism_spectrum_disorders/pdf/dawson_rogers.pdf>DawsonG et al. (2010)</a> is a newly-published randomized controlled trial of a newly-developed manualized very early autism intervention and as such deserves a close look.<br /><br />Developed by Sally Rogers and Geraldine Dawson, the Early Start Denver Model has been the subject of a handful of previous papers, none involving anything approaching a major trial. ESDM is reported to combine the Denver Model with Pivotal Response Training, two interventions developed in the 1980s which individually lack good quality evidence for their benefits or harms. If you are interested in ESDM and its possible fall-out, I suggest reading the existing DM, PRT, and ESDM literatures. <br /><br />A book chapter, possibly written circa 2006, describes the ESDM RCT, apparently before all the results were in (SmithM et al., 2008), and is essential reading, as is the riveting recently-published ESDM manual (Rogers & DawsonG, 2010).<br /><br />My first exposure to the foundations of ESDM was a 2003 presentation by Sally Rogers. She showed a video of an adult picking up two blocks and banging them together and putting them down. In response a very young nonautistic child automatically picked up the blocks, banged them together, and put them down. A very young autistic child immediately noticed that the blocks were very interesting-shaped (and really they were--these were incredibly interesting blocks), picked them up, and inspected them closely seeing as they were so darn interesting. <br /><br />You can guess which child's response was deemed wonderful and praiseworthy and "right," and which child's response was deemed defective and unfortunate and totally wrong. With this in mind, here are some comments:<br /><br /><strong>About the ESDM</strong><br /><br />1. According to current definitions, ESDM is an "eclectic" autism intervention, combining ABA-based with non-ABA-based approaches. The manual specifies that ESDM "most closely resembles" RDI, DIR/Floortime, Hanen, responsiveness training, and SCERTS. ESDM also "has clear ties to" PRT, incidental teaching, and milieu teaching. And ESDM "has in common" some elements of ABA-based interventions as per Lovaas. Speech and occupational therapy are also thrown in. PROMPT too. The wide range of intervention approaches constantly available to children receiving ESDM is emphasized in all its available descriptions. <br /><br />2. On principle and on the basis of small poor-quality trials, major behaviour analysts have claimed that "eclectic" autism interventions are ineffective; two recent examples <a href=http://www.ncbi.nlm.nih.gov/pubmed/18775372>here</a> and <a href=http://www.ncbi.nlm.nih.gov/pubmed/19404840>here</a>. The Association of Professional Behavior Analysts has thoroughly <a href=http://www.apbahome.net/newsletter.php?nid=1&aid=5>condemned "eclectic" approaches to autism</a>, to uncritical applause by the Association for Behavior Analysis International's <a href=http://dddc.rutgers.edu/files/newsletter_winter_2009.pdf>autism special interest group</a>. <br /><br />3. The reported overarching theoretical basis for ESDM is a <a href=http://en.wikipedia.org/wiki/The_Interpersonal_World_of_the_Infant>1985 book</a> by the well-known <a href=http://en.wikipedia.org/wiki/Daniel_Stern_(psychologist)>psychoanalyst, Daniel Stern</a>. Other <a href=http://en.wikipedia.org/wiki/Margaret_Mahler>psychoanalytic influences</a> have been reported for the <a href=http://tec.sagepub.com/cgi/content/abstract/11/2/29>DM component of ESDM</a>. <br /><br />4. ESDM is further premised on autism being (from the manual) "at its heart a social disorder." Autistics' profound (entirely one-sided) failures in displaying proper interpersonal relationships and proper social motivation produce a cascade of purely negative effects disrupting all areas of proper development and learning. <br /><br />5. The ESDM goal: autistics must become as "normal" (from the manual) as possible. Every waking hour, autistics must work towards the one ESDM-recognized proper way to relate, learn, play, develop, etc. <br /><br />6. Autistics' tendency to learn in atypical ways is treated as though disordered and harmful--as evidence for our primary social deficits, which in turn deny us all the proper, typical "crucial learning experiences" (e.g., "birthday party games!"--from the ESDM manual). <br /><br />7. The only proper ESDM way to learn is through typical interpersonal interaction involving proper, typical use of developmentally-proper highly-rationed highly-controlled materials which must only be regarded and manipulated by the child in the one proper socially-related ESDM manner. <br /><br />8. Keeping information away from autistic children who are persistently at risk of learning from it in non-ESDM-approved ways is a theme throughout the ESDM manual. While it is claimed that ESDM does not require a therapy room, in fact there are many instructions as to how such a room should be set up. This is representative: "Ideally the room should be able to be arranged with nothing in it except a table and chairs and a closed or covered cabinet or shelves." This is called "the natural environment."<br /><br />9. While a great advantage of ESDM is reported to be that it is "fun to do!" in fact the manual sternly declares, when contemplating autistics who may enjoy learning in the wrong non-ESDM way: "Our job is not to keep children happy; it is to teach them their objectives." And that very limited hierarchical range of objectives must be rigidly achieved in the one rigid proper manner and the one rigid proper order. <br /><br /><strong>About the design of the ESDM RCT (DawsonG et al., 2010)</strong><br /><br />1. The trial spanned 2003-2008 and was <a href=http://clinicaltrials.gov/ct2/show/NCT00090415>registered more than a year after it started</a>. Many of the reported planned measures (see SmithM et al., 2008), particularly those related to brain activity, go unmentioned in DawsonG et al. (2010). <br /><br />2. Basic description: 48 autistic children within the age range of 18 to 30 months (actual range is not reported) were randomized to two groups, to recieve either a minimum of 2yrs of ESDM or of services available in the community. Children were evaluated with four main measures (Mullen, Vineland, ADOS, a scale of repetitive behaviours) and according to their diagnostic status, after about one then two years. At the two-year evaluation, children had received an average of 29 months of intervention. Children had to be at least 48 months at the 2-year evaluation; therefore children younger at intake received more intervention than children older at intake.<br /><br />3. Numerous and strict, but not atypical, exclusion criteria were applied. For example, children considered to fall into the "severe" and "profound" ranges of intellectual disability were excluded, as has been done in many popularly-cited ABA controlled trials. <br /><br />4. In this trial at least, the ESDM is not an intensive intervention. The authors aimed for 20hrs/wk, but achieved only 15.2 (standard deviation 1.4), which falls into the range of low intensity <a href=http://www.ncbi.nlm.nih.gov/pubmed/16477514>as currently defined</a>. <br /><br />5. Parents were expected to apply ESDM principles for an additional 5hrs/wk, but in fact reported (how accurately is unclear) more than triple this amount, indicating great enthusiasm and high expectations. ESDM parents also reported using non-ESDM services for about 5hrs/wk. <br /><br />6. By the rock-bottom standards of the ambient autism literature, the ESDM trial design has many notable strengths. The intervention is manualized and attempts were made to establish treatment fidelity for the ESDM group. Currently-recognized gold-standard diagnostic instruments were used. By non-autism non-ABA standards, this is a very small trial, but it improves on an abysmal literature rife with even tinier trials. Most important, against the strong trend denying autistics even the possibility of good experimental design, this is an inexcusably rare RCT.<br /><br />7. However, by <a href=http://www.consort-statement.org/>very well-established standards in non-autism non-ABA areas</a>, the ESDM RCT is in many respects poorly reported, which makes it difficult to properly asssess its design. <br /><br />8. The control condition lacks virtually any useful description much less a rationale. Unspecified individuals provided the control group parents with unspecified information (what "resource manuals"? what "reading materials"?) including about unspecified services. The authors briefly trot out a few generic types of available services without indicating whether they were recommended or chosen. Children in this group received on average ~9hrs/wk of unspecified individual therapy plus the same of unspecified group-level therapy. Only mean intensities are reported--no SDs much less ranges. We don't know whether some children received huge amounts of intervention while others received none. <br /><br />9. In my view, the authors' documented astonishing lack of interest in their own control group speaks to the very human expectations and biases applied to this group, which would be unlikely not to affect their outcomes. <br /><br />10. Crucial information about who or what generated the randomization sequence, and whether or how allocation was concealed, is missing. <br /><br />11. Remarkably, 51 autistic children were originally randomized to the two groups. Three disappear off to the side somehow, no explanation given, <em>after</em> random assigment to groups but <em>without showing up in either group</em>. Two assigned to the ESDM group rejected this intervention due to its requirements. The third, of unreported group assignment, was found to be not autistic, but Rett's. But none of these randomly allocated children shows up in their assigned group. <br /><br />12. Even with the 48 children deemed to be assigned to a group, there is no intention to treat analysis. Data were ultimately lost from 3 children in the control group, no reason given. <br /><br />13. The pre-post use of the ADOS as a scale of "severity" raises numerous questions. The first preliminary attempt at creating such a scale was not accepted for publication until <a href=http://www.springerlink.com/content/f84020m52p74l1k7/>the end of 2008 (and not epublished until 2009)</a>. This scale is further based on the <a href=http://www.springerlink.com/content/a624l4401852w647/>revised ADOS algorithm</a>, which is not cited by DawsonG et al. (2010) and was not accepted for publication until mid-2006. <br /><br />14. Blinding is notoriously difficult in these kinds of trials. Parents cannot be blinded to intervention group, but some measures rely on parent report. While evaluators are described as "naive to invervention status," they are not described as blind to the nature and purpose of the study or of ESDM. Those involved in providing ESDM would in addition be aware of the study's purpose, importance, and outcome measures. <br /><br /><strong>About the reported results of the ESDM RCT (DawsonG et al., 2010)</strong><br /><br />1. The ESDM manual provides results claimed to be from DawsonG et al. (2010), which is referred to both as "in press" and as a published 2010 Pediatrics paper. Inexplicably, information and data in the manual reported as being from DawsonG et al. (2010) differs somewhat from what is reported in the paper. There are also contradictions about the RCT within the ESDM manual regarding, for example, number of children in the ESDM group and intensity of the intervention they received. <br /><br />2. There is an obvious error in the data in DawsonG et al. (2010). I spotted it immediately on first reading, as should anyone--you don't need to be able to do math in your head--who actually looks at the data. For two of the Vineland subscales (daily living and motor skills), some data are apparently reversed from Table 1 to Table 2, such that data in one table does not correspond to data in the other. The persistence of such an obvious error through copy-editing and so on raises questions about whether there are less obvious errors. <br /><br />3. The main result is in the Mullen composite. On this score, the ESDM group finished at ~79, representing an ~18 point change from baseline but almost no change from the first year score of ~76. There is a just-significant 11-point change score advantage for the ESDM group over their controls at the two-year evaluation, an advantage which diminished from first to second year evaluations. The Mullen ESDM advantage is concentrated in the expressive and receptive language subscales.<br /><br />4. Most striking re the Mullen composite is the huge increase in the scatter of ESDM scores. First and second year SDs are ~23 and ~24, much higher than baseline (SD ~9) and much higher than in the control group. Regardless, ranges of scores are not provided. But clearly one effect of ESDM is to dramatically increase variability of outcomes at a very young age. The ~11-point year two ESDM group advantage is drowned in their ~24-point SD. <br /><br />5. While the ESDM group outperformed their controls on the Vineland composite, this results from the control condition reducing Vineland scores. These scores depend on unblinded parent report, which would plausibly reflect the disinterest and low expectations, obvious in how this study is reported, conveyed and applied to the control group. The ESDM group, regardless of their important advantages in this respect, did not experience any improvement in their Vineland scores over two years. <br /><br />6. In addition, the ESDM group's Vineland scores show a huge increase in scatter, not found in the controls, by year two. The SD balloons from ~6 to ~16 (and from ~8 to ~22 in the communication sub-scale). Again, the ESDM's effect is to greatly increase variability in outcomes. <br /><br />7. The authors dedicate a lot of space to claims of group differences in subjectively-determined diagnostic status. Those changes were limited to moves between autism and PDD-NOS--none of the children were judged nonautistic. However, on the ADOS, the only reported quantitative measure which offers the possibility of differentiating PDD-NOS from autism, the groups did not differ in outcome. Also, diagnosis was remarkably stable in this study, <a href=http://www3.interscience.wiley.com/journal/117960627/abstract?CRETRY=1&SRETRY=0>compared to previous findings</a> regarding children in the <a href=http://autismcrisis.blogspot.com/2009/05/autism-recovery-story.html>30-month-or-younger age range</a>. <br /><br />8. Apart from not differing on ultimate ADOS "severity" scores, the groups did not differ on a repetitive behaviours scale. The ESDM did not make autistic children measurably "less severely autistic" by the usual standards. <br /><br />9. The premise of ESDM is that only through displaying proper typical social interaction and behaviour can autistics begin to learn anything worth learning. In the two reported measures of social abilities (ADOS, Vineland socialization), the ESDM children did not do any better than their controls at either evaluation. They did not improve (by the usual standards) pre-post, with losses in Vineland socialization. <br /><br />10. The ubiquitous claim that "earlier is better" accompanying the publicity for this study is unjustified. The authors made no attempt to correlate outcomes with their 12-month possible age-range at intake. To the contrary, the authors enacted the view that younger children at intake must receive more intervention in order to be judged alongside children who were older at intake--the contrary position to "earlier is better." <br /><br />11. The ESDM can only be used up to 60 months, with objectives targeted at children up to 48 months. At the end of this RCT, the ESDM children had a possible age range (actual range not reported) from 48 to 54 months. All were still autistic or PDD-NOS. Given the enormous increase in scatter of Mullen and Vineland scores, some had done extremely poorly by the usual standards. Against the unfounded claims of "earlier is better," questions arise as to how being so judged at such a young age within a highly publicized intervention will affect these children. <br /><br />12. In reporting the ESDM RCT, the ESDM manual states that "ESDM needs to be independently replicated before it can be considered an empirically supported treatment." But <a href=http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777219/pdf/10803_2009_Article_796.pdf/?tool=pmcentrez>a recent paper whose senior author is Sally Rogers</a> claims that ESDM is "evidence-based" and that its components are "empirically supported." <br /><br /><strong>A few last comments</strong><br /><br />Eric Fombonne has published a <a href=http://pediatrics.aappublications.org/cgi/eletters/125/1/e17>Pediatrics eLetter about the ESDM RCT</a>. He concurs with some points I make, not with others, and he failed to spot the error in the data. <br /><br />If you rummage around in the <a href=http://clinicaltrials.gov/>ClinicalTrials.gov</a> site you will find an in-progress multi-site RCT of the ESDM where intake age range has been dropped to 12 to 24 months. You will also find a multi-site RCT, targeting 5-12 month old children considered "at risk" for autism, which will likely use ESDM-type intervention in an effort to prevent autism. <br /><br />As a large body of work, the ESDM manual, RCT, and other related materials, including the formal and informal work of Geraldine Dawson and Sally Rogers, read like a total condemnation of what I've done in the above. I'm not supposed to notice details and errors, contradictions and anomalies--or if I inappropriately do, I should forget about them and concentrate on emitting socially-appropriate responses (pick up the blocks, bang them together, put them down--<em>don't look at them</em>). I'm not supposed to notice other discrepancies, for instance between recognized scientific and ethical standards and those imposed on autistics. I'm supposed to direct all my effort towards the developmentally-appropriate equivalent of "birthday party games!"<br /><br />The above should be verifiable, through reading the supplied sources. As usual, if I've made any factual errors, always a possibility, please let me know. <br /><br /><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=PEDIATRICS&rft_id=info%3Adoi%2F10.1542%2Fpeds.2009-0958&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Randomized%2C+Controlled+Trial+of+an+Intervention+for+Toddlers+With+Autism%3A+The+Early+Start+Denver+Model&rft.issn=0031-4005&rft.date=2009&rft.volume=125&rft.issue=1&rft.spage=0&rft.epage=0&rft.artnum=http%3A%2F%2Fpediatrics.aappublications.org%2Fcgi%2Fdoi%2F10.1542%2Fpeds.2009-0958&rft.au=Dawson%2C+G.&rft.au=Rogers%2C+S.&rft.au=Munson%2C+J.&rft.au=Smith%2C+M.&rft.au=Winter%2C+J.&rft.au=Greenson%2C+J.&rft.au=Donaldson%2C+A.&rft.au=Varley%2C+J.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2009). Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model <span style="font-style: italic;">PEDIATRICS, 125</span> (1) DOI: <a rev="review" href="http://dx.doi.org/10.1542/peds.2009-0958">10.1542/peds.2009-0958</a></span><br /><br />Rogers, S.J., & Dawson, G. (2010). <em>Early Start Denver Model for Young Children with Autism.</em> New York, NY: Guilford Press. <br /><br />Smith, M., Rogers, S., & Dawson, G. (2008). The Early Start Denver Model: a comprehensive early intervention approach for toddlers with autism. In: Handleman J.S., Harris S.L., eds., <em>Preschool Education Programs for Children With Autism, 3rd ed.</em> Austin, TX: Pro-Ed, pp. 65–101.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-12051527282546260282009-12-31T11:43:00.011-05:002010-01-05T16:53:08.884-05:001 in 86: the prevalence of autism among adults<span style="float: left; padding: 5px;"><a href="http://researchblogging.org/news/?p=764"><img alt="This post was chosen as an Editor's Selection for ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb_editors-selection.png" style="border:0;"/></a></span><br />"<a href=http://www.timesonline.co.uk/tol/news/uk/health/article687445.ece>Autism rate in children has doubled, say doctors</a>" ... "<a href=http://news.bbc.co.uk/2/hi/health/5174144.stm>Autism 'more common than thought'</a>" ... "<a href=http://www.telegraph.co.uk/news/uknews/3341682/Autism-in-children-10-times-higher-than-first-thought.html>Autism in children '10 times higher' than first thought</a>" ... "<a href=http://www.dailymail.co.uk/news/article-395567/Autism-record-high.html>Autism at a record high</a>" ... "<a href=http://www.earthtimes.org/articles/show/7628.html>autism is 25 times more common than what researchers thought</a>"... <br /><br />This mess of headlines and claims was generated in response to one autism prevalence study, Baird et al. (2006), published in the Lancet. <br /><br />All 56,946 individuals comprising the targeted population cohort in this study are, as of today, the last day in the decade, 18 years of age or older. They were born between July 1, 1990 and Dec 31, 1991 and they are now all adults. <br /><br />Within this cohort, Baird et al. (2006) reported an autistic spectrum prevalence of ~116/10,000. That's 1 in 86, and all these autistics, originally assessed as such when 9 to 14yrs old, are now adults. <br /><br />For those to whom this is a matter of pressing importance, Asperger's contributed exactly nothing to that prevalence figure. So none of those 1 in 86 assessed-as-autistic now-adults are, at least according to Baird et al. (2006), Asperger's.<br /><br />I've previously <a href=http://autismcrisis.blogspot.com/2007/07/about-that-surge-in-autism.html>rattled</a> <a href=http://autismcrisis.blogspot.com/2009/01/autism-in-california-minds-new.html>on</a> about Baird et al. (2006), one of the most important autism epidemiological studies to be published to date, and one of the most misrepresented. The authors found that small differences in case definition produced prevalence figures ranging from ~25/10,000 (1 in 400) to ~116/10,000 (1 in 86), a 4.6-fold discrepancy--within the same cohort at the same time, using the same diagnostic criteria, diagnostic team, and "gold standard" diagnostic instruments. <br /><br />In the context of an earlier closely related prevalence study (Baird et al., 2000), the authors additionally found that a change in case ascertainment method <a href=http://autismcrisis.blogspot.com/2007/07/about-that-surge-in-autism.html>doubled autistic spectrum prevalence within very nearly the same cohort</a>, even when diagnostic standards were equivalent. <br /><br />But such provocative and crucial findings, and others similar, were lost in the predictably incoherent uproar (see representative headlines and quotes, above) over that one figure--the 1 in 86 who as of today are all adults. I suggest that if Baird et al. (2006) had been conducted in exactly the same manner with a cohort born five years earlier, the findings would not be much different. Or ten years earlier, or more, were that possible. Of course that's a wild guess, but not an entirely unfounded one. <br /><br />Earlier this year, <a href=http://www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-health-surveys/autism-spectrum-disorders-in-adults-living-in-households-throughout-england--report-from-the-adult-psychiatric-morbidity-survey-2007>a small innovative UK study</a> reported a prevalence of about 1 in 100 for autistics aged 16 and up--for autistic adults right up to and over age 75. There are only bad reasons for why this small study of autistic adults is unique and unprecedented. <br /><br />The world would look very different now, for both autistics and nonautistics, if over the past decade or more there had been a rational discourse about autism prevalence <a href=http://autismcrisis.blogspot.com/2008/11/even-more-autism-speaks-epidemiology_27.html>in which the existence of older autistics</a> was not automatically denied. <br /><br /><br /><strong>References:</strong><br /><br />Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. <em>Journal of the American Academy of Child and Adolescent Psychiatry, 39,</em> 694-702.<br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=The+Lancet&rft_id=info%3Adoi%2F10.1016%2FS0140-6736%2806%2969041-7&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Prevalence+of+disorders+of+the+autism+spectrum+in+a+population+cohort+of+children+in+South+Thames%3A+the+Special+Needs+and+Autism+Project+%28SNAP%29&rft.issn=01406736&rft.date=2006&rft.volume=368&rft.issue=9531&rft.spage=210&rft.epage=215&rft.artnum=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0140673606690417&rft.au=BAIRD%2C+G.&rft.au=SIMONOFF%2C+E.&rft.au=PICKLES%2C+A.&rft.au=CHANDLER%2C+S.&rft.au=LOUCAS%2C+T.&rft.au=MELDRUM%2C+D.&rft.au=CHARMAN%2C+T.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CAutism%2C+Ethics">BAIRD, G., SIMONOFF, E., PICKLES, A., CHANDLER, S., LOUCAS, T., MELDRUM, D., & CHARMAN, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) <span style="font-style: italic;">The Lancet, 368</span> (9531), 210-215 DOI: <a rev="review" href="http://dx.doi.org/10.1016/S0140-6736(06)69041-7">10.1016/S0140-6736(06)69041-7</a></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-39138082428897352742009-10-03T19:02:00.004-05:002009-11-16T14:51:17.462-05:00Autistic people are persons: An anniversaryThe statement that "autistic people are persons" is part of the 2008 decision by the Canadian Human Rights Tribunal in <a href=http://autismcrisis.blogspot.com/2008/10/another-autistic-victory.html><em>Dawson vs Canada Post Corporation</em></a>. Today, <a href=http://www.canlii.org/en/ca/chrt/doc/2008/2008chrt41/2008chrt41.html>this decision</a> is one year old. Here is the relevant excerpt:<br /><br /><blockquote>[133] This said, there is no doubt for the Tribunal that autistic people are persons, that unfortunately they are not well accepted in society, that they are looked at often times as special creatures who are not part of society as a whole and that society would be better off without them. The Tribunal is further of the view that autistic people need to be better respected and protected in society. They need above all to be better understood and accepted. [...] <br /><br />[134] Hence, the Tribunal is of the view that the <em>Canadian Human Rights Act </em>provides to autistic people the same protection as to non autistic people and that both are equal before and under the law.</blockquote>These statements are contrary to existing Canadian jurisprudence. In ABA-related litigation, autism advocates have used Canada's major human rights laws, including our highest law, the <em>Charter of Rights and Freedoms</em>, to deny the humanity, personhood, equality and human rights of most autistics in Canada. <br /><br />This wholesale denial and dehumanization is exemplified in the <em>Auton</em> and <em>Wynberg</em> trial decisions. These two decisions have been universally revered and promoted by autism advocates, as representing what autistics deserve. <br /><br />Autism advocates also universally opposed my <a href=http://www.sentex.net/~nexus23/naa_fac.html>intervention in <em>Auton</em></a>, which sought to inform the Supreme Court of Canada that, contrary to the positions of both sides, <a href=http://autismcrisis.blogspot.com/2009/04/elizabeth-svobodas-autism-culture.html>autistics are human beings with human rights</a>, and this status should not be denied to most autistics in Canada. <br /><br />By "most autistics," I mean those of us, the majority of autistics in Canada, who have not received unlimited ABA-based interventions starting early in life. <br /><br />To my knowledge, the CHRT decision in my case is unprecedented in Canada, in recognizing the personhood, humanity, equality, and human rights of autistics--regardless of which interventions we have or have not received at any point in our lives. More about the CHRT decision, including its serious problems, can be found <a href=http://autismcrisis.blogspot.com/2008/10/another-autistic-victory.html>here</a>, and some background is <a href=http://autismcrisis.blogspot.com/2007/03/autism-advocacy-at-canadian-human.html>here</a>. <br /><br />The CHRT decision was not appealed by Canada Post. It has also been <a href=http://www.canlii.org/en/ca/fct/doc/2009/2009fc715/2009fc715.html>cited in another case</a>, this time decided in Federal Court, involving an autistic and Canada Post. Here is an example of how my case was cited, from paragraph 79:<br /><br /><blockquote>The <em>Dawson</em> case above, specifically is critical of rigid corporate rules that preclude true inclusiveness of those with disabilities such as the applicants.</blockquote>The decision in my case was helpful in giving another autistic person the chance to pursue, if she wishes, a human rights case based on Canada Post's decision not to hire her. And the Federal Court decision in turn includes language which may further help other autistics seeking to be regarded and treated as human beings with human rights. <br /><br />Autistic people are persons--happy anniversary.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-35976218522027098082009-07-23T15:04:00.007-05:002009-07-30T02:16:58.358-05:00An anomaly in autism intervention research<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />Promotion first, science later, if ever. This pattern is near universal when it comes to autism interventions. In the absence of good quality research, autism interventions are loudly claimed to be effective. <br /><br />For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step. The real triumph has been widespread agreement that fair tests of ABA-based interventions are unethical and bad for autistics. As a result, any experimental design carrying the risk of being informative about the benefits and harms of ABA-based interventions has, <a href=http://www.ncbi.nlm.nih.gov/pubmed/3571656>for a long time now</a>, <a href=http://autismcrisis.blogspot.com/2007/06/tale-of-two-aba-studies.html>been considered unethical</a>. <br /><br />The practice of claiming effectiveness for an autism intervention which has not been fairly tested, then using these claims of effectiveness to deem fair tests unethical, has clear benefits to service providers. And this practice has received wall-to-wall support from autism advocates, who have in turn imposed it on autistics through lobbying and litigation. <br /><br />Meanwhile, <a href=http://www.badscience.net/2007/09/the-fishy-reckoning/>this practice is not admired outside the realm of autism advocacy</a>. Premature claims of effectiveness in themselves make fair tests of interventions more difficult--particularly, as is the case with many autism interventions, when blinding cannot be fully achieved. But those promoting ABA-based autism interventions go further and demand that autistics be entirely denied the benefit and protection of good experimental design. <br /><br />In my view, this practice--its longstanding and widespread support by autism advocates, its more recent support by ASAN (example <a href=http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=33&keywords=restraints&PHPSESSID=572e713471ea96d9fe9c5ad4a5c0939d>here</a>), and its widespread imposition on autistics--continues to greatly harm autistics. Any group so denied such basic standards of science and ethics would be harmed. <br /><br />Interestingly, not all autism researchers have stooped to prevailing autism advocacy standards.<br /><br />Some years ago, a pilot RCT of an early autism intervention was published (Aldred et al., 2004). The intervention was manualized, of relatively low intensity, and targeted solely at the parents of preschool autistic children. Through a true experimental design, the intervention was found to have several significant positive effects, most markedly in increasing the expressive language of very young autistic children. <br /><br />Successful RCTs of early autism interventions are virtually non-existent. But the researchers involved in Aldred et al. (2004) totally failed to go forth and proclaim the effectiveness of their manualized intervention. After all, they only had a small pilot RCT--the same size as the only published RCT, not a notably successful one (Smith et al., 2000, 2001), in the entire 48-year history of research into ABA-based autism interventions. <br /><br />Instead of issuing premature claims of effectiveness, the authors of Aldred et al. (2004) and many other collaborating UK researchers went on to conduct a large multi-site RCT, the <a href=http://www.medicine.manchester.ac.uk/pact/>Preschool Autism Communication Trial</a>. They received <a href=http://www.mrc.ac.uk/Newspublications/News/MRC002047>MRC funding for this 4-year project in 2005</a>. <br /><br />Some information about the PACT's design has been reported in a recent paper (Aldred & Green, 2009). <br /><br />The trial began in early 2006 and will finish late this year. The researchers hoped to recruit 144 preschool autistic children across three sites, but exceeded their expectations and recruited 152. These children were randomized into two arms, one receiving the PACT intervention, while children in both arms continued to receive whatever other interventions their parents chose ("treatment as usual").<br /><br />So far as I know, the PACT is larger than any existing published RCT in the history of autism research. The PACT's design means that it carries a good risk of being informative about the effectiveness of the studied intervention. There is no good reason for the PACT to be unprecedented, but it is. <br /><br />In <a href=http://www.medicine.manchester.ac.uk/pact/newsletters/REF%20PACT%20newsletter%20manc%20jan%2009.pdf>one of the PACT's recent newsletters</a>, the PACT's Chief Investigator, Jonathan Green, notes that there has been a lot of interest in the PACT manual and in "training opportunities" with respect to this intervention. Dr Green responds:<br /><br /><blockquote>Until we have the results of the trial we are not able to disseminate the intervention manual or to undertake any training; but be assured that after the results are in (and depending of course on the outcome in terms of effectiveness!) we do have potential plans in place for such dissemination.</blockquote>In other words, and keeping in mind there is a successful published pilot RCT, there are no plans to disseminate information about the intervention--not until there is good quality evidence as to its effectiveness. This is the recognized scientific standard in non-autism areas. <br /><br />Aldred et al. (2004) and the PACT shouldn't in any way be above scrutiny or criticism. For example, I can see problems in how Aldred et al. (2004) was designed (I mention one of them <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>here</a>), which may or may not be carried over to the PACT. But the pilot RCT and the resulting PACT generally demonstrate the only science- and ethics-based sequence when it comes to interventions and treatments: good quality research first, <em>then</em> think about spreading the word.<br /><br /><br /><strong>References:</strong><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=British+Journal+of+Hospital+Medicine&rft_id=info%3Adoi%2F&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Early+social+communication%0D%0Ainterventions+for+autism&rft.issn=&rft.date=2009&rft.volume=70&rft.issue=3&rft.spage=143&rft.epage=145&rft.artnum=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F19274002&rft.au=Aldred%2C+C.R.&rft.au=Green%2C+J.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Aldred, C.R., & Green, J. (2009). Early social communication<br />interventions for autism <span style="font-style: italic;">British Journal of Hospital Medicine, 70</span> (3), 143-145</span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+Child+Psychology+and+Psychiatry&rft_id=info%3Adoi%2F10.1111%2Fj.1469-7610.2004.00338.x&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=A+new+social+communication+intervention+for+children+with+autism%3A+pilot+randomised+controlled+treatment+study+suggesting+effectiveness&rft.issn=0021-9630&rft.date=2004&rft.volume=45&rft.issue=8&rft.spage=1420&rft.epage=1430&rft.artnum=http%3A%2F%2Fwww.blackwell-synergy.com%2Flinks%2Fdoi%2F10.1111%252Fj.1469-7610.2004.00338.x&rft.au=Aldred%2C+C.&rft.au=Green%2C+J.&rft.au=Adams%2C+C.&rfe_dat=bpr3.included=1;bpr3.tags=Clinical+Research%2CPsychology%2CAutism%2C+Ethics">Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness <span style="font-style: italic;">Journal of Child Psychology and Psychiatry, 45</span> (8), 1420-1430 DOI: <a rev="review" href="http://dx.doi.org/10.1111/j.1469-7610.2004.00338.x">10.1111/j.1469-7610.2004.00338.x</a></span><br /><br />Smith, T., Groen, A.D., and Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. <em>American Journal on Mental Retardation, 105,</em> 269-85. Erratum in <em>American Journal on Mental Retardation, 105,</em> 508. Erratum in <em>American Journal on Mental Retardation, 106,</em> 208.<br /><br /><br /><strong>Addendum:</strong> This post is included in the <a href=http://beyondtheshortcoat.wordpress.com/2009/07/30/the-116th-meeting-of-the-skeptics-circlethe-wooful-er/>116th Meeting of the Skeptics' Circle</a> hosted by <a href=http://beyondtheshortcoat.wordpress.com/>Beyond the Short Coat</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-6418301909289167682009-07-15T10:50:00.002-05:002009-11-16T14:50:39.687-05:00Alan Turing's brilliant essayIn 1950, Alan Turing wrote <a href=http://www.loebner.net/Prizef/TuringArticle.html>"Computing Machinery and Intelligence."</a> This one short paper, exploring what came to be called the Turing test, <a href=http://www.macrovu.com/CCTGeneralInfo.html>continues to influence research and thinking</a> across multiple fields. <br /><br />Tyler Cowen and I have co-authored a new paper asking two questions. <a href=http://www.gmu.edu/centers/publicchoice/faculty%20pages/Tyler/turingfinal.pdf>What does the Turing test really mean? And how many human beings (including Turing) could pass?</a> Our premise is that some aspects of Turing's paper have not received sufficient attention:<br /><br /><blockquote>Turing’s paper is rich and multi-faceted and we are not seeking to overturn all of the extant interpretations. We do wish to suggest that a potent and indeed subversive perspective in the paper has been underemphasized. Some of the message of Turing’s paper is encouraging us to take a broader perspective on intelligence and some of his points are <em>ethical</em> in nature. Turing’s paper is about the possibility of unusual forms of intelligence, our inability to recognize those intelligences, and the limitations of indistinguishability as a standard for defining intelligence. “Inability to imitate does not rule out intelligence” is an alternative way of reading many parts of his argument. Turing was issuing the warning that we should not dismiss or persecute entities which we cannot easily categorize or understand.</blockquote>The facts of Turing's life enter into our argument, as does autism in many respects. Here is what we conclude:<br /><br /><blockquote>It is possible that Turing conceived of his imitation test precisely because he had so much difficulty “passing” and communicating himself. In social settings these facts were seen as disabilities but in the longer term they helped Turing produce this brilliant essay.</blockquote>Tyler Cowen is a professor of economics at George Mason University. His page is <a href=http://www.gmu.edu/jbc/Tyler/>here</a>. He blogs at <a href=http://www.marginalrevolution.com/marginalrevolution/>Marginal Revolution</a>; his post about our paper is <a href=http://www.marginalrevolution.com/marginalrevolution/2009/07/what-does-the-turing-test-really-mean.html>here</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-44439638035149626852009-07-13T15:32:00.001-05:002009-07-13T15:52:40.502-05:00Definitely not autism advocacy: Accomplishments, capabilities, and rights<blockquote>As an advocate for the rights of physically and mentally disabled people, I am acutely aware of how many people in our society consider the disabled to be childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.</blockquote>This opens a NYT opinion piece written by Evan Kemp. While Mr Kemp raises concerns about a specific fundraising event, his statements have much broader relevance. <br /><br />For instance, Mr Kemp writes of the great harm that ensues when disabled children are denied the possibility of learning from successful disabled adults. The autism advocacy signature argument that disabled adults with achievements cannot really be disabled is not directly mentioned. But this is just another way to deny that successful disabled adults exist and it carries the same consequences. <br /><br />Mr Kemp also notes how portraying disability as "overwhelmingly destructive" results in fear of disabled people and our consequent segregation from society. Then there is the issue of research priorities, some of which have the effect of supporting: <br /><br /><blockquote>the damaging and common prejudice that handicapped people are "sick." As sick people, it follows that we should allow others to take care of all our needs until a cure is found.</blockquote>Throughout his piece, Mr Kemp emphasizes that regarding disabled people as frightening and pathetic infantilizes us and leads us towards segregation, hopelessness, and dependence, to the great detriment of ourselves and others. Mr Kemp concludes with many recommendations, including: <br /><br /><blockquote>Problems of economic waste, demoralization and segregation can be solved only when disabled people are depicted in the light of our very real accomplishments, capabilities and rights.</blockquote>Mr Kemp's opinion piece was published almost three decades ago, in 1981. You can find it <a href=http://www.nytimes.com/1981/09/03/opinion/aiding-the-disabled-no-pity-please.html>here</a>. Autism advocacy continues to run in the opposite direction, rejecting and rolling back what we have learned about disability and human rights, going backwards in time to before Mr Kemp ever said a word. <br /><br />Evan J. Kemp Jr. died in 1997. You can read his obituary <a href=http://www.nytimes.com/1997/08/14/us/evan-j-kemp-jr-60-champion-of-disabled.html>here</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-68650973355067849422009-07-06T05:43:00.007-05:002009-12-31T12:39:21.675-05:00The highest autism prevalence ever?<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />Baron-Cohen et al. (2009) propose a world where there are 157/10,000 autistics. The authors used what they call a "novel approach" to autism epidemiology and this is worth a closer look. <br /><br />The study is based on questions sent to schools about the UK SEN (Special Education Needs) register, and a survey, including a screening questionaire, sent to parents of students aged 5 to 9 years. Many schools, 66 out of 162, refused to participate. Of schools that agreed, 79 of 96, representing 8824 out of 11,635 children, provided SEN register information. Of the surveys sent to parents, 29%, representing 3373 out of 11,700 children, were responded to. <br /><br />Participating schools located 83 children identified as autistic spectrum according to the SEN register. Of these, 10 children were assigned the specific diagnosis of autism (I'll call them "specific-autism"), while the rest were assigned other autistic spectrum diagnoses ("other-spectrum"). None of these diagnoses was verified by Baron-Cohen et al. (2009) in any way. These 83 SEN children constitute 94/10,000 of the proposed 157/10,000. <br /><br />In the survey, parents were asked whether their child had an existing autistic spectrum diagnosis. The authors "confirmed," to their standards, through information from parents only, diagnoses for 19 children. Four others attended special schools and were assumed to be "confirmed" as autistic without any verification, for a total of 23. No information about how many of these children are specific-autism or other-spectrum is given. The 23 children were expanded into a prevalence of 99/10,000--impressively close to the SEN register figure. <br /><br />The screening questionaire sent to parents was the recently re-named CAST (Childhood Autism Spectrum Test). All children reported by parents as scoring above one CAST threshold, and a minority of children scoring above a lower CAST threshold, and who were not already reported by the parent survey to be autistic, were invited for assessment. Eventually 77 children underwent assessment by ADOS, ADI-R, and clinical judgment. Eleven children were given autistic spectrum diagnoses--four specific-autism, seven other-spectrum. <br /><br />So there are three sets of autistic children here: 83 SEN children, 23 diagnosis survey children, and 11 CAST children. The CAST children are considered to represent "unknown" or "undetected" autistics in schools, while the other two sets of children (SEN and diagnosis) represent equivalent samples of "known" autistics who have been located in two different ways from very nearly the same cohort. <br /><br />Working from the diagnosis and CAST samples, Baron-Cohen et al. (2009) come up with a ratio of total number of cases (known plus unknown) to known cases, which yields a multiplier of 1.67. This in turn is applied to the SEN-based prevalence of 94/10,000, resulting in that grand total of 157/10,000. <br /><br />And this all looks quite reasonable. <a href=http://neuroskeptic.blogspot.com/2009/06/are-1-in-64-kids-autistic.html>Even the Neuroskeptic thinks so</a>. But here are a few things I noticed. <br /><br />The authors report no means of verifying whether the SEN and diagnosis samples are equivalent, an assumption on which the study depends. There is a dearth of demographic information, including the absence of any reported demographic measure common to both the SEN and diagnosis samples. <br /><br />And for neither "known" sample (SEN and diagnosis) were any of the diagnoses verified either through direct assessment or direct access to records. Other recently reported UK epidemiology has not arrived at such a tidy agreement between prevalence of existing autism diagnoses and prevalence of autistics on the SEN register, nor at such a high prevalence using information from one or both sources. <br /><br />Before they started sending out surveys, Baird et al. (2006) found that about 15% of 255 autistics with a "known" autism diagnosis (according to various health and clinical records) were not on the SEN register--under any diagnosis at all. This percentage would likely be higher if SEN autistic spectrum diagnoses only were considered. <br /><br />Whether the 255 "known," pre-survey diagnoses from Baird et al. (2006) would be considered "confirmed" according to the standards of Baron-Cohen et al. (2009) is unclear to me, but in Baird et al. (2006), they add up to a prevalence of ~45/10,000. This is less than half the prevalence of what should be the comparable "known" diagnosis sample in Baron-Cohen et al. (2009). <br /><br />Then there is Williams et al. (2008), where the authors had access to both medical and SEN records for an entire 14,062-child cohort. Using both kinds of records, they located a total of 86 "known" autistics for a prevalence of ~62/10,000. Of these, 36% were found in medical records only; 17% were found in SEN records only; and 47% were found in both. <br /><br />Here again the "known" diagnosis total prevalence, derived from direct examination of complete records rather than selective responding to questions directed at schools or parents, is a much lower figure than found via both the SEN and diagnosis samples in Baron-Cohen et al. (2009). And Williams et al. (2008) show that diagnoses appearing in medical records, and diagnoses recorded via SEN, do not produce the same samples of autistic children--at least, not when there is direct access to these records for a complete cohort. <br /><br />The original contribution of Baron-Cohen et al. (2009) is, according to the authors, the attempt to identify school-aged autistics who haven't been spotted as atypical. This is claimed to set their study apart from Baird et al. (2006). But 8 of the 77 children chosen for direct assessment through CAST screening in Baron-Cohen et al. (2009) were reported to be from "special schools" which, according to the authors, "require extensive assessment of individual special needs." Yet the authors suggest the CAST-screened sample was, in their words,<br /><br /><blockquote>...quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties.</blockquote>I don't know whether the CAST-screened special school children (who may or may not have been in the final 11) were on the SEN register, but doesn't this seem likely? Assuming for now (because you can only assume) that this was not under an autism diagnosis, in fact these were exactly the children screened for autism by Baird et al. (2006)--all children on the SEN register for any reason. <br /><br />Further in this direction, Baron-Cohen et al. (2009) surprisingly report no way for the authors to verify whether the CAST-screened children were or were not on the SEN register, under any diagnosis--including autism. But the study hinges on the two samples, the SEN and CAST samples, being independent from each other. <br /><br />One more thing to note is the actual composition of the 157/10,000. These numbers come from the reported data. Here goes:<br /><br />11/10,000: "known" specific-autism children (SEN register)<br />23/10,000: "unknown" specific-autism children (CAST screening)<br />83/10,000: "known" other-spectrum children (SEN register)<br />40/10,000: "unknown" other-spectrum children (CAST screening)<br /><br />If you add up the figures, you get the 157/10,000 total, of which 34/10,000--well within the range of previous findings--represents prevalence for the specific diagnosis of autism. The authors checked ratios of known to unknown autistic males vs females, and found no difference, showing that female autistics were not more likely than male autistics to be undetected. But the authors didn't check ratios of known to unknown autistics for specific-autism vs other-spectrum diagnoses. <br /><br />If they did, they would find that for every known specific-autism child, there are about two unknown. The opposite is true for other-spectrum children, where about two are known for every unknown child. While only one-third of all specific-autism children are known, two thirds of other-spectrum children are known. Does this mean that children who meet criteria for the specific diagnosis of autism are much harder to spot, or are doing much better in school, than children who are popularly regarded as <a href=http://autismcrisis.blogspot.com/2009/06/notes-on-autism-severity-and-dsm-v.html>having "less severe" autistic spectrum diagnoses</a>? <br /><br />Or maybe the data are just very difficult to interpret. As usual, if I've made any factual errors, please let me know. <br /><br /><br /><strong>References:</strong><br /><br />Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). <em>Lancet, 368,</em> 210-215.<br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=The+British+Journal+of+Psychiatry&rft_id=info%3Adoi%2F10.1192%2Fbjp.bp.108.059345&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Prevalence+of+autism-spectrum+conditions%3A+UK+school-based+population+study&rft.issn=0007-1250&rft.date=2009&rft.volume=194&rft.issue=6&rft.spage=500&rft.epage=509&rft.artnum=http%3A%2F%2Fbjp.rcpsych.org%2Fcgi%2Fdoi%2F10.1192%2Fbjp.bp.108.059345&rft.au=Baron-Cohen%2C+S.&rft.au=Scott%2C+F.&rft.au=Allison%2C+C.&rft.au=Williams%2C+J.&rft.au=Bolton%2C+P.&rft.au=Matthews%2C+F.&rft.au=Brayne%2C+C.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CAutism%2C+Epidemiology">Baron-Cohen, S., Scott, F., Allison, C., Williams, J., Bolton, P., Matthews, F., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study <span style="font-style: italic;">The British Journal of Psychiatry, 194</span> (6), 500-509 DOI: <a rev="review" href="http://dx.doi.org/10.1192/bjp.bp.108.059345">10.1192/bjp.bp.108.059345</a></span><br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Developmental+Medicine+%26+Child+Neurology&rft_id=info%3Adoi%2F10.1111%2Fj.1469-8749.2008.03042.x&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Prevalence+and+characteristics+of+autistic+spectrum+disorders+in+the+ALSPAC+cohort&rft.issn=00121622&rft.date=2008&rft.volume=50&rft.issue=9&rft.spage=672&rft.epage=677&rft.artnum=http%3A%2F%2Fblackwell-synergy.com%2Fdoi%2Fabs%2F10.1111%2Fj.1469-8749.2008.03042.x&rft.au=Williams%2C+E.&rft.au=Thomas%2C+K.&rft.au=Sidebotham%2C+H.&rft.au=Emond%2C+A.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CAutism%2C+Epidemiology">Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort <span style="font-style: italic;">Developmental Medicine & Child Neurology, 50</span> (9), 672-677 DOI: <a rev="review" href="http://dx.doi.org/10.1111/j.1469-8749.2008.03042.x">10.1111/j.1469-8749.2008.03042.x</a></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-82277700129392760052009-06-15T11:56:00.004-05:002009-06-16T22:35:54.455-05:00Notes on autism severity and the DSM-VI was asked briefly to comment on <a href=http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neurodevelopmental-Disorders-Work-Group-Report.aspx>the notion of "severity" of autism as currently proposed for the DSM-V</a>. Here are some far from complete notes (some from earlier writing or work of mine) I organized in response:<br /><br /><br />Currently, “severity” of autism most often refers to the attempt to quantify the obviousness of autistic traits and abilities. The more obvious these traits and abilities are judged to be, and therefore the more atypical a person is judged to be, the more “severe” autism is considered to be.<br /> <br />Being “more severe” (having more obvious autistic traits and abilities, or being more obviously atypical) is widely presumed to be worse than being “less severe” (having less obvious autistic traits and abilities or being less obviously atypical), while being not autistic at all (no obvious autistic traits and abilities) is considered an “optimal outcome.”<br /><br />However, there is no current consensus on what neurocognitive differences underlie observable autistic atypicalities and therefore fundamentally define what makes a person autistic rather than nonautistic. At this fundamental level (what autism is), there is currently no consensual way to judge who is “more autistic” or “less autistic” (which would be construed as “more severely autistic” and “less severely autistic”) or whether this would be good, bad or irrelevant.<br /> <br />Currently there is/are no consensual instrument(s) agreed to measure autism “severity.” The major diagnostic instruments (ADOS, ADI-R) do not work like scales, though they have often and misleadingly been misapplied this way. A recent preliminary attempt to transform the ADOS into a scale of “severity” has just been published (Gotham et al., 2009). <br /><br />On popular measures of “severity” (the CARS, the ADI-R improperly used as a scale, the SRS), an autistic who has one or more very high apparent abilities (that is, has a highly uneven profile of apparent abilities) will score as more "severe" than an autistic whose apparent abilities are uniformly low.<br /> <br />The large proportion of autistics recently reported to have exceptional skills (Howlin et al., 2009) would be judged as less “severe” if they lost those skills. Exceptional skills are considered to increase “severity” (that is, atypicality) in autism, not decrease it. This would also likely be true of autistic cognitive strengths which have been revealed in the peer-reviewed literature in comparisons between the performance of autistics and nonautistics on a wide range of tasks (I have started compiling an inventory of these, which was the subject of an <a href=http://autismcrisis.blogspot.com/2009/05/autistic-strengths-at-imfar-2009.html>IMFAR 2009 poster</a>). Indeed, at IMFAR 2009, the loss of exceptional autistic abilities (<a href=http://imfar.confex.com/imfar/2009/webprogram/Paper3495.html>Eigsti et al., 2009</a>; from <a href=http://autismcrisis.blogspot.com/2009/05/autism-recovery-story.html>Deborah Fein’s group</a>) was reported as evidence for “optimal outcomes” in autism. <br /><br />In the same direction, we have found that autistics who scored higher on pieces of the ADI-R (and would therefore commonly be assumed to be "more severe") had a wide range of better visual skills than autistics who scored lower on these measures (Caron et al., 2006).<br /> <br />Perhaps unsurprisingly then, autism “severity” (defined and measured in various ways) has been a poor predictor of outcomes in autism (Howlin, 2005). Here are two examples from papers reporting very good outcomes in autism:<br /><br /><blockquote>It cannot be emphasized strongly enough that… it would have been impossible for anyone to predict this outcome. <em>(Kanner et al., 1972)</em><br /><br />… early history explained little of the variance in outcome. Indeed, the good and poor outcome groups differed little with respect to early impairments in social responsiveness, deviant language, and bizarre behaviors. <em>(Szatmari et al.,1989)</em></blockquote>Currently the best adult outcomes reported in the literature still belong to autistics who as children met the narrowest, strictest, and presumed-to-be most “severe” autism diagnostic criteria ever devised (Kanner et al., 1972; Szatmari et al., 1989; Farley et al., 2009). Asperger (1944/1991) described an individual whose outcome was outstanding (he was a successful academic) as “grossly autistic” with “impossible behavior,” etc.<br /> <br />Some of the most obvious (that is, most “severe”) <em>and</em> successful autistics have been and continue to be individuals regarded as autistic savants. Indeed, the “obviousness” of these individuals, the fact that their atypicalities are so obvious (which would be judged as so “severe”), has been successfully exploited in the autism literature as a means of investigating the fundamental atypicalities which make autistics autistic.<br /> <br />The assumption that having more obvious autistic traits and abilities is bad (“more severe”) has resulted in prejudicial judgments in the literature. An autistic boy (who has accomplished more as a child and young adult than most people, autistic or otherwise) with a full-scale IQ of more than 100 and a strong performance on numerous tests is judged to be “low-functioning,” because he is so obviously atypical. That is, he is judged to be very “severely” autistic (Bonneh et al., 2008; Belmonte et al., 2009), and this must solely be a very bad thing. In Aldred et al. (2004), preschool autistic children are falsely judged to be “low-functioning” or “high-functioning” solely on the basis of presumed autism “severity” falsely drawn from ADOS scores. It is being falsely and prejudicially assumed that an autistic whose traits and abilities are more obvious must function poorly. <br /><br />The proposed DSM-V changes will enhance societal prejudices against autistic traits and abilities. These prejudices already serve to prevent autistics whose traits and abilities are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc. Under the proposed DSM-V changes, autistics who are highly and obviously atypical would be even more harshly judged, without there being anything approaching a sufficient empirical rationale for this. Autistics whose communication and social interaction is highly atypical, or who most strongly pursue their focused abilities and interests (something which has widely been acknowledged leads to good outcomes, but has largely not interested researchers; Howlin, 2005), will now be at risk of being regarded as “most severe.” This is at a time when the term “severe autism” is popularly equated with low expectations, hopelessness, dread and horror. <br /><br />Also, in my experience, the term “severe autism” is commonly used as a justification for why autistic people not only can but must be treated in ways that would be instantly recognized as unacceptable in any other population. This includes lowering or discarding very basic standards of science and ethics, a pervasive practice now applied to the entire autistic population. I am referring to the basic standards of science and ethics that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes. <br /><br />The proposed DSM-V wording raises numerous specific concerns; I will mention two. One is that it enshrines the false and harmful assumption, an assumption showing a striking absence of reciprocity on the part of the DSM-V committee, that if autistics communicate or interact in atypical and possibly very adaptive ways, then this communication or interaction must be defective or wrong, or must not exist at all. Another concern is that by using words such as “rituals,” the DSM-V is perpetuating the misconstrual of autistics’ focused abilities and interests (and motor mannerisms). This misconstrual led to the demonstrably false and harmful assumption that autistics’ atypicalities in this area amount to “obsessions” and must be treatable in the same manner as OCD (see recent failed citalopram RCT, King et al., 2009; a failed fluoxetine RCT has been announced by <a href=http://www.neuropharm.co.uk/media_centre/news_release/?id=3542>Neuropharm</a> and <a href=http://www.neuropharm.co.uk/media_centre/news_release/?id=3605>Autism Speaks</a>, but not published yet).<br /> <br />In these and other ways the proposed DSM-V autism criteria define possibly very adaptive but atypical autistic traits and abilities as being more “severe” (worse or more defective) the more they are obvious. This leads to the assumption that such traits and abilities should ideally be suppressed and eliminated.<br /><br /><br /><strong>References: </strong> <br /><br />Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. <em>Journal of Child Psychology and Psychiatry, 45,</em> 1420-1430.<br /><br />Asperger, H. (1944/1991). 'Autistic psychopathology' in childhood (Frith, U., Trans.). In: Frith, U. (Ed.), <em>Autism and Asperger Syndrome.</em> Cambridge University Press, Cambridge, UK, pp. 37-92.<br /><br />Belmonte, M.K., Bonneh, Y.S., Adini, Y., Iversen. P.E., Akshoomoff, N.A., Kenet, T., Moore, C.I., Simon, H.J., Houde, J.F., & Merzenich, M.M. (2009). Autism overflows with syntheses. <em>Neuropsychology Review, 19,</em> 273-4.<br /><br />Bonneh, Y.S., Belmonte, M.K., Pei, F., Iversen, P.E., Kenet, T., Akshoomoff, N., Adini, Y., Simon, H.J., Moore, C.I., Houde, J.F., & Merzenich, M.M. (2008). Cross-modal extinction in a boy with severely autistic behaviour and high verbal intelligence. <em>Cognitive Neuropsychology, 25, </em>635-52.<br /><br />Caron, M.-J., Mottron, L., Berthiaume, C., & Dawson, M. (2006). Cognitive mechanisms, specificity and neural underpinnings of visuo-spatial peaks in autism. <em>Brain, 129,</em> 1789-802.<br /><br />Farley, M.A., McMahon, W.M., Fombonne, E., Jenson, W.R., Miller, J., Gardner, M., Block, H., Pingree, C.B., Ritvo, E.R., Ritvo, R.A., & Coon, H. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. <em>Autism Research, 2,</em> 109-118.<br /><br />Gotham, K., Pickles, A., & Lord, C. (2009). Standardizing ADOS scores for a measure of severity in autism spectrum disorders. <em>Journal of Autism and Developmental Disorders, 39,</em> 693-705. <br /><br />Howlin, P. (2005). Outcomes in autism spectrum disorders. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), <em>Handbook of Autism and Pervasive Developmental Disorders </em>(pp. 201-220). Hoboken, NJ: Wiley. <br /><br />Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. <em>Philosophical Transactions of the Royal Society B: Biological Sciences, 364,</em> 1359-1367. <br /><br />Kanner, L., Rodriguez, A., & Ashenden, B. (1972). How far can autistic children go in matters of social adaptation? <em>Journal of Autism and Childhood Schizophrenia, 2,</em> 9-33.<br /><br />King, B.H., Hollander, E., Sikich, L., McCracken, J.T., Scahill, L., Bregman, J.D., Donnelly, C.L., Anagnostou, E., Dukes, K., Sullivan, L., Hirtz, D., Wagner, A., & Ritz, L. (2009). Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: citalopram ineffective in children with autism. <em>Archives of General Psychiatry, 66,</em> 583-590.<br /><br />Szatmari, P., Bartolucci, G., Bremner, R., Bond, S., & Rich, S. (1989). A follow-up of high-functioning autistic children. <em>Journal of Autism and Developmental Disorders, 19,</em> 213-225.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-20633189754763363542009-05-27T14:40:00.009-05:002009-06-02T16:19:56.959-05:00The autistic way of laughing<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />There are real and fake smiles that can be distinguished visually, if you know how, and it turns out that there are real and fake laughs. <a href=http://faculty.ithaca.edu/whudenko/research/>William Hudenko</a>, a clinician and researcher, patiently explained this to me at <a href=http://imfar.confex.com/imfar/2009/webprogram/start.html>IMFAR 2009</a>. Real laughs are "voiced" versus fake laughs that are "unvoiced" and these two kinds of laughs can be distinguished acoustically. <br /><br /><a href=http://www.ncbi.nlm.nih.gov/pubmed/19449097>Hudenko et al. (in press)</a> describe voiced laughs as having a "tonal, song-like quality" and as "strongly associated with positive affect," while unvoiced laughs are "largely atonal and noisier." Instead of reflecting a person's genuine emotions, unvoiced laughs are hypothesized to reflect various social signals. <br /><br />When nonautistics laugh, about half the time their laughs are unvoiced. So how do autistics laugh? <br /><br />Hudenko and his colleagues collected a lot of laughs from autistic children and two groups of nonautistic children (matched on chronological age, and matched according to vocabulary test age equivalents). Laughs were elicited in a 10-minute "laugh assessment sequence" in which "an examiner playfully interacted with each child."<br /><br />The results? Autistics laughed just as much as nonautistics. The sole difference between autistic and nonautistic laughs was in proportion of voiced laughs. While on average, 97% of autistic children's "laugh episodes" were voiced, only 63% and 47% (age-equivalent and chronological age groups respectively) of nonautistic children's laughs were voiced. And about half the autistic children produced <em>only</em> voiced laughs. <br /><br />You can find some autistic and nonautistic laughs <a href=http://www.ithaca.edu/faculty/whudenko/laughs/Welcome.html>here</a>.<br /><br />In their discussion, Hudenko et al. put forward this view:<br /><br /><blockquote>...children with autism routinely produce fewer types of laughs than typically developing children because their laughter is more closely linked to their internal experience of positive affect.</blockquote>If this is so, then the autistic children in this study expressed more positive emotion--more genuine happy affect--in interacting with another person than did the nonautistic children. Hudenko et al. also refer to <a href=http://michaeljowren.googlepages.com/BachorowskiOwren01.pdf>an earlier study</a> which found, in the typical population, more positive responses to voiced versus unvoiced laughter. Nonautistics <em>prefer</em> voiced laughter.<br /><br />Given <a href=http://psych.wisc.edu/lang/pdf/Gernsbacher_BBS_Commentary.pdf>prevailing standards in the autism literature</a> (arising from <a href=http://autismcrisis.blogspot.com/2007/02/autism-advocates-do-not-take-autism.html>prevalent standards of autism advocacy</a>), no one should be surprised at how Hudenko et al. interpret their findings. The authors imply, in the absence of any evidence in this direction, that all this happy, genuine, engaging autistic laughter is unlikely to be socially "appropriate." Unfortunately, according to the authors, autistics "are not using laughter in a socially subtle manner." And here is the paper's unfounded concluding sentence:<br /><br /><blockquote>In fact, by using laughter in a less social manner it may be that this expressive pattern actually contributes to the social deficits exhibited by children with autism instead of serving to facilitate connections with others.</blockquote> But the story doesn't quite end there. I ran into Dr Hudenko at IMFAR because he and one of his colleagues had a poster (abstract is <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper4228.html>here</a>), a follow-up of sorts. In this new and as yet unpublished study, recordings of voiced and unvoiced autistic and nonautistic laughs were played for 135 nonautistic college-aged students. The students were asked to rate their "affective response" to each laugh on a scale from strongly negative to strongly positive. In a different task, the students were asked whether each recorded laugh came from an autistic or nonautistic child. <br /><br />The results? The students rated their responses to autistic laughs as being significantly more positive than their responses to nonautistic laughs. Interestingly, this held true even when voicing--whether laughs were voiced or unvoiced--was accounted for. And when asked to do so, the nonautistic students could tell autistic and nonautistic laughs apart. The students performed above chance on this task, while only about one-fifth of them believed they could make this distinction. <br /><br />So Hudenko et al. (in press) contend that autistics' way of laughing is defective and detrimental--a presumed contributor to autistics' presumed social deficits. This in turn implies that ideally, autistics would not have such engagingly positive, genuine and distinctive laughs, and instead should have the only "right" kind of laughter, the kind which characterizes nonautistics. But according to Dr Hudenko's IMFAR follow-up study, "improving" autistics this way would result in their laughter being <em>less</em> preferable to nonautistics than is currently the case. <br /><br /><br />Reference:<br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+Autism+and+Developmental+Disorders&rft_id=info%3Adoi%2F10.1007%2Fs10803-009-0752-1&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Laughter+Differs+in+Children+with+Autism%3A+An+Acoustic+Analysis+of+Laughs+Produced+by+Children+With+and+Without+the+Disorder&rft.issn=0162-3257&rft.date=2009&rft.volume=&rft.issue=&rft.spage=0&rft.epage=0&rft.artnum=http%3A%2F%2Fwww.springerlink.com%2Findex%2F10.1007%2Fs10803-009-0752-1&rft.au=Hudenko%2C+W.&rft.au=Stone%2C+W.&rft.au=Bachorowski%2C+J.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CAutism%2C+Ethics">Hudenko, W., Stone, W., & Bachorowski, J. (2009). Laughter Differs in Children with Autism: An Acoustic Analysis of Laughs Produced by Children With and Without the Disorder <span style="font-style: italic;">Journal of Autism and Developmental Disorders</span> DOI: <a rev="review" href="http://dx.doi.org/10.1007/s10803-009-0752-1">10.1007/s10803-009-0752-1</a></span><br /><br /><strong>Addendum:</strong> This post is included in the <a href=http://kriswager.blogspot.com/2009/06/scientia-pro-publica.html>5th edition of Scientia Pro Publica</a> (more information <a href=http://blogcarnival.com/bc/cprof_6714.html>here</a>), hosted by <a href=http://kriswager.blogspot.com/>Pro-Science</a>.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-26669696606971073782009-05-17T12:00:00.008-05:002009-05-18T19:48:33.072-05:00Saving autistics and the world: Skin shock at the 2009 ABA conventionThe <a href=http://www.pr.com/press-release/149903>press release for the 2009 Association for Behavior Analysis International convention</a> claims that behaviour analysis "Reveals Methods for Solving Global Issues." There is a list of "major topics at the convention" which include:<br /><br /><blockquote>How behavior analysis will help save the planet... How behavior analysis will help save the economy... How behavior analysis will help save lives... How behavior analysis will help us understand each other...</blockquote> Autism is modestly mentioned in the third topic only (lives will be saved), even though claims that behaviour analysis can save the economy by saving children from autism are <a href=http://autismcrisis.blogspot.com/2007/04/autistic-persons-burden.html>as common</a> as they are<a href=http://autismcrisis.blogspot.com/2009/02/revisiting-costs-of-autism.html> unfounded in existing published evidence</a>. <br /><br />Looking around the <a href=http://www.abainternational.org/PB/EventSearchHome.aspx>2009 ABAI convention program</a>, you will in fact bump into the notion that ABA can, and should, save the world. For instance, from Tutorial #287:<br /><br /><blockquote>This presentation will inspire a reconsideration of how ABA can save the world... the presenter will discuss the relevance of courage and compassion in realizing the potential of ABA to save the world...</blockquote>Symposium #403 at this year's ABAI convention is chaired by Matthew Israel (Judge Rotenberg Center), and is titled:<br /><br /><blockquote><strong>The Use of Contingent Skin Shock in Treating Behaviors Other than Aggression and Self-Abuse</strong></blockquote>The three presenters in Symposium #403 are all from the Judge Rotenberg Center. Nathan Blenkush, BCBA-D (this is the highest status certification for behaviour analysts currently available), describes his presentation this way:<br /><br /><blockquote>There are a number of topographies of problem behaviors that are intractable to standard behavioral and pharmaceutical interventions that cannot be classified as aggressive or self-abusive behaviors. In this presentation, we will describe the successful treatment of a variety of intractable behaviors using Contingent Skin Shock. First, we will review the literature associated with the use of CSS to treat non-aggressive and non-self injurious behaviors. Second, we will discuss how problem behaviors such as property destruction, major disruption (e.g. yelling, tantrums,), noncompliance or any other behavior in excess can severely harm students and completely interfere with treatment, education, and social development. Finally, we will present a series of case studies that will illustrate the use of CSS to treat these types of behaviors. Finally, we will discuss the treatment of these behaviors within the framework of the right to effective treatment.</blockquote>Robert Von Heyn, BCBA-D, describes his presentation this way:<br /><br /><blockquote>We describe the use of supplementary Contingent Skin Shock (CSS) to address intractable behaviors other than aggression and self-abuse. From 2003 to 2006, CSS was added to the programs of 72 students. However, in June of 2006, the New York State Department of Education put into effect regulations that limited the use of skin shock to aggressive and self-injurious behaviors. Subsequently, a federal judge temporarily blocked these regulations at the request of the parents and treatment resumed for most of these students. Here we first describe the initial effect of adding CSS to the students programs. Second, we describe the effect of the temporary suspension of the treatment for behaviors such as major disruption, property destruction, and noncompliance. Third, we describe how the regulations affected the treatment of problem behaviors such as aggression and self-abuse. Finally, we describe the effect of the reintroduction of CSS treatment, following intervention by a federal judge, for destructive, major disruptive, and noncompliant behaviors.</blockquote>And Nick Lowther describes his presentation this way:<br /><br /><blockquote>In June of 2006, the New York State Department of Education put into effect a set of regulations related to the use of aversive interventions such as Contingent Skin Shock (CSS). The regulations limited the use of CSS (and other procedures such as mechanical restraint) only to aggressive and self-injurious behaviors. The regulations also placed a number of other restrictions on the use of procedures such as CSS. However, after 9 weeks, in September of 2006, a federal judge temporarily blocked these regulations at the request of the parents. In this presentation, we discuss the impact these regulations had on the students at the Judge Rotenberg Center. In addition, the history of this lawsuit will be discussed. Finally, we will provide an update regarding the current status of the suit.</blockquote>Symposium #403 comes with a written "Purpose," which adds little to the above except the false information that existing evidence supports the use of contingent electric shock for some behaviours. It is true that the current edition of the major ABA textbook (Cooper et al., 2007) promotes the use of electric shock with developmentally disabled people. But setting aside ethical issues which should not be set aside, Cooper et al. (2007) cite no good quality evidence arising from good experimental design, or anything even close, in support of this practice. In this major ABA textbook, very poor standards of science and ethics, which are known to harm human beings, coincide and are promoted as what autistics and other developmentally disabled people deserve. <br /><br />In contrast there are scientists who, at least in some instances, have regarded autistics and other developmentally disabled people as deserving the benefit and protection of recognized standards of science and ethics. These scientists have unsurprisingly revealed the <a href=http://www.jameslindlibrary.org/>extremely well-established</a> and <a href=http://www.consort-statement.org/>well-recognized</a> (outside of autism and ABA areas) importance of good experimental design (Tyrer et al., 2008; abstract is <a href=http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(08)60072-0/abstract>here</a>, short description <a href=http://autismcrisis.blogspot.com/2008/12/assortment-of-2008-autism-papers.html>here</a>). <br /><br />I will not be attending the 2009 ABAI convention. The publicly available statements by the JRC presenters, two of whom are BCBAs at the highest level, are provided unedited here to speak for themselves. While the JRC's specific practices are the subject of controversy in some quarters, their stated standards are <a href=http://www.blisstree.com/autismvox/positively-autistic-on-cbc-news/comment-page-2/#comment-34022>widely promoted as the only way to save autistics</a>, and are not in any way unique to the JRC. <br /><br /><br />References:<br /><br />Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). <em>Applied behavior analysis: Second edition. </em>Upper Saddle River, N.J.: Pearson Prentice Hall. <br /><br />Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M,, Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A., & Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. <em>Lancet, 371,</em> 57-63.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-36705564.post-88550104886701744852009-05-14T15:23:00.007-05:002009-05-16T12:25:50.740-05:00The autism recovery story<span style="float: left; padding: 5px;"><a href="http://www.researchblogging.org"><img alt="ResearchBlogging.org" src="http://www.researchblogging.org/public/citation_icons/rb2_large_gray.png" style="border:0;"/></a></span><br />You have seen the autism recovery story <a href=http://www.google.com/hostednews/ap/article/ALeqM5jRilhgkP3MgIaH0pDB1LLaub1b-AD9827V680>in</a> <a href=http://abclocal.go.com/wls/story?section=news/health&id=6804036>the</a> <a href=http://www.telegraph.co.uk/health/children_shealth/5298367/One-in-10-children-with-autism-overcome-condition-by-age-nine-study-finds.html>media</a>. Bloggers <a href=http://autisticaphorisms.blogspot.com/2009/05/harold-dohertys-fictitious-aba-study.html>have</a> <a href=http://leftbrainrightbrain.co.uk/?p=2332>jumped</a> <a href=http://autism.change.org/blog/view/the_recovery_issue>in</a> too. I was at <a href=http://autismcrisis.blogspot.com/2009/05/autistic-strengths-at-imfar-2009.html>IMFAR 2009 in Chicago</a> and saw the educational symposium presentation by Deborah Fein that was the stated cause of all the excitement. <br /><br />But <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper5228.html>in her presentation, as in her abstract</a>, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When speaking at IMFAR, she expressed doubt that this in fact could be done.<br /><br />Dr Fein <a href=http://abclocal.go.com/wls/story?section=news/health&id=6804036>clearly added more information when speaking with the media</a>. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media. <br /><br />However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper5228.html>oral presentation</a> or in a <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper3495.html>series of</a> <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper4564.html>related</a> <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper4538.html>posters</a>. <br /><br />Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed. <br /><br />In order to claim that conclusions can be drawn about the effectiveness of interventions in Dr Fein's study, as it has been presented, you have to be willing to reject and discard even the most basic standards of science. These are the basic standards that automatically protect and benefit nonautistics, the basic standards that were developed because without them people were harmed. <br /><br />Two other aspects of what Dr Fein presented at IMFAR 2009 are noteworthy. One is that a major paper in the literature, published not long ago, reported a very high rate of what is now being called recovery from autism. To my knowledge, this paper did not make headlines. <br /><br />Turner and Stone (2007) were looking at the stability of autism diagnosis at around age two years (mean age of 29 months). They carefully used various combinations within what is considered the gold-standard diagnosis: ADOS, ADI-R, and clinical judgment. And they found that early diagnosis, in their sample of 48 originally autistic children, was very unstable. <br /><br />By age four (mean age of 53 months), only 53% of children originally given the specific diagnosis of autism retained this specific diagnosis, while only 68% were still on the autistic spectrum. The rest were not. That is a 32% rate of "recovery." Only 40% of children originally diagnosed with PDD-NOS at age two still had an autistic spectrum diagnosis by age four. That would be a 60% rate of "recovery." <br /><br />The children whose age two diagnoses were unstable were largely still regarded as having difficulties, a finding that echoes Dr Fein's work, but they no longer could be diagnosed as autistic. <br /><br />Turner and Stone (2007) attempted to associate instability of diagnosis (what is being called "recovery") with interventions received, but no association was found. They report:<br /><br /><blockquote>All children in the sample received speech therapy, and the majority received additional interventions. There were no significant differences between the Stable and Change groups for the amount of speech therapy, <em>t</em>(46) = .30, <em>p</em> = .77, behavioral therapy, <em>t</em>(46) = .78, <em>p</em> = .44, occupational therapy, <em>t</em>(46) = 1.90, <em>p</em> = .06, special education, <em>t</em>(46) = 1.96, <em>p</em> = .06, or regular preschool, <em>t</em>(46) = .13, <em>p </em>= .90. Of the 6 children who received an average of 20 or more hours of intervention per week, 5 were in the Stable group and 1 was in the Change group.</blockquote>In other words, few of the 48 originally autistic children in this study received what would be considered "intensive" intervention, and the majority of those who did kept their autism diagnosis. <br /><br />In contrast, Turner and Stone (2007) found that diagnostic instability was related to earliness of diagnosis: the earlier the diagnosis, the more unstable it was. <br /><br />The authors go on to discuss what may underlie the diagnostic instability they found while using the best available diagnostic standards. In fact there are many possible explanations. One point they do underline, however, is that given their findings, <br /><br /><blockquote>...extreme caution must be taken when interpreting intervention findings that suggest ‘cures.’</blockquote>And of course that would include intervention findings that suggest "recovery." This may be all the more so when diagnosis, and therefore intervention, is very early. <br /><br />Also noteworthy is Dr Fein's use of the term "optimal outcome," a term she prefers to "recovery." Dr Fein and her colleagues have determined the <a href=http://www.ncbi.nlm.nih.gov/pubmed/19009353>criteria for optimal outcomes in autism</a>, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.<br /><br />According to Dr Fein, and those enthusiastically promoting her views, we know what an optimal human being is like, and this optimal human being is not autistic. An optimal outcome is not Stephen Wiltshire or Alex Bain or Daniel Tammet or Derek Paravicini or Hugo Lamoureux or Vernon Smith or Richard Bocherds or Danny Melvin or Tony DeBlois or janet norman-bain or Jessica Park or Temple Grandin or the large proportion of autistics found recently to have exceptional skills (Howlin et al., 2009) or me for that matter. <br /><br />Indeed, Dr Fein's group has proposed <a href=http://imfar.confex.com/imfar/2009/webprogram/Paper3495.html>loss of exceptional autistic skills</a> as evidence for optimal outcomes. And given the great support Dr Fein's views have received, we should be in little doubt as to the goals of popularly demanded autism interventions, and the consequences for those of us who for whatever reason remain unrecovered. The decision as to which kind of human being is optimal and which kind is not has been made. <br /><br /><br />References:<br /><br />Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. <em>Philosophical Transactions of the Royal Society B: Biological Sciences, 364,</em> 1359-1367. <br /><br /><span class="Z3988" title="ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.jtitle=Journal+of+Child+Psychology+and+Psychiatry&rft_id=info%3Adoi%2F10.1111%2Fj.1469-7610.2007.01744.x&rfr_id=info%3Asid%2Fresearchblogging.org&rft.atitle=Variability+in+outcome+for+children+with+an+ASD+diagnosis+at+age+2&rft.issn=0021-9630&rft.date=2007&rft.volume=48&rft.issue=8&rft.spage=793&rft.epage=802&rft.artnum=http%3A%2F%2Fwww.blackwell-synergy.com%2Fdoi%2Fabs%2F10.1111%2Fj.1469-7610.2007.01744.x&rft.au=Turner%2C+L.&rft.au=Stone%2C+W.&rfe_dat=bpr3.included=1;bpr3.tags=Psychology%2CSocial+Science%2CEthics%2C+Autism">Turner, L., & Stone, W. (2007). Variability in outcome for children with an ASD diagnosis at age 2 <span style="font-style: italic;">Journal of Child Psychology and Psychiatry, 48</span> (8), 793-802 DOI: <a rev="review" href="http://dx.doi.org/10.1111/j.1469-7610.2007.01744.x">10.1111/j.1469-7610.2007.01744.x</a></span>Unknownnoreply@blogger.com