the autism crisis: science ethics in the era of autism advocacy
Time 2021-11-01 14:06:27Web Name: the autism crisis: science ethics in the era of autism advocacy
WebSite: http://autismcrisis.blogspot.com
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crisis,science,the,autism,ethics,of,advocacy,in,Description:
keywords: description:On 22nd December 2017, Spectrum published an article with the headline: "Partnerships with people on the spectrum yield rich research insights."
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.
Instead, to our disappointment, the twonamed autistic people in the article were subject to misrepresentation and asystematic exclusion of their voices.
Unlike all others named and featured in thearticle, neither Kabie Brook nor Michelle Dawson was interviewed, neither was directlyquoted, and neither was provided any links to their work or online profiles.
The message is that autism research is notsomething these autistics can communicate about, much less contribute to asequals, and that autistics must always and only be spoken for by others.
The striking segregation of named autisticpeople in this article is inconsistent with journalist ethics. The autisticswho were misrepresented and denied a voice have been directly harmed.
Our goal is to bring this to the attentionof Spectrum readers, so they may be better informed. We hope that Spectrum willimprove its standards in the future.
Kabie Brook, Autism Rights Group Highland
Michelle Dawson, University of Montreal
Sue Fletcher-Watson, University of Edinburgh
Post-script: this open letter is also posted here.3 comments: Friday, November 10, 2017 What history tells us about autism research, reduxIn 2015 Autisticainvited 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 here) had no links; I've added a token few of the countless possible.
History tells us about the great importance of standards in human researchstandards 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.
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.
Instead autism organizations and advocacy leaders, including those known for opposing each other, agree when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standardsespecially 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.
The results are obvious. In non-autism areas, poor quality research and its harmsits waste of resources, its misleading findingsare 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.
In one influential paper, 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 themselvesthis clearly would be harmful and unacceptable.
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.
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 autism-specific low standards. 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.9 comments: Wednesday, December 02, 2015 Notes on autism and assisted dyingIn the Carter decision, the Supreme Court of Canadastruck 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, Carter, and assisted dyinghere. 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.
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.
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.
What sets autistic adults apart is their difficult situation in Canada when it comes to basic scientific, medical, and ethical standardsstandards which are often described as universal. These are the standards on which the Supreme Court of Canada (SCC) Carter decision implicitly and explicitly depends. The decisions premise is that these standards will indeed benefit and protect everyone, whatever their role or wishes with regard to assisted dying.
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 Carter 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.
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.
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 et al., 2015).
What the SCCs Carter decision means with respect to autism is unclear. We are not in Belgiums 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.
Adults diagnosed as autistic disproportionately experience suicide, suicidality, and premature death (Lai Baron-Cohen, 2015; Hirvikoski et al., 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 Carter decision. In all aspects of assisted dying, they will face hazardous, onerous, and unacceptable disadvantages.
References
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., Bölte, S. (2015). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, pii: bjp.bp.114.160192
Lai, M. C., Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027.
Lerner, B. H., Caplan, A. L. (2015). Euthanasia in Belgium and the Netherlands: On a slippery slope? JAMA Internal Medicine, 175, 1640-1.
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. BMJ Open, 5(7), e007454.
Submittedto: External Panel on Options for a LegislativeResponse to Carter v. Canada,November 23, 2015,by MichelleDawson, CETEDUM, University of Montreal
Further notes
For more about autistics being denied basic standards in research, and some consequences of this, see my recent guest post for Autisticaon history, segregation, and autism. For the current complicated situation regarding assisted dying in Quebec, see recent update.
Postscript: On Dec 3, the Canadian government asked the SCC for an additional six months to respond to Carter. For further updates, see the comments.11 comments: Thursday, April 12, 2012 Autistic in the UK
Before I forget how to blog again, some excerpts from a live Q idiot savantHowlin and several co-authors, including Sir Michael Rutter, wrote in a 2009 paper:
Here are Pam Heaton and Gregory Wallace from a major 2004 review:Down (1887) was the first to coin the term idiot savant
The term idiot-savant was first used by Down (1887)From 1999, Pam Heaton again, as well as Linda Pring, Beate Hermelin, and others:
The term "Idiot-Savants" was first used by Langdon Down in 1887Darold Treffert, often described as the authority on savants, has written accounts along these lines:
However, the first specific description of savant syndrome took place in London in 1887 when Dr J. Langdon Down gave that years 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.That's from a 2009 paper. There seems to be an impressive consensus in the literature that Down coined the term "idiot savant" in 1887 (here is the source cited in all of the above), a claim that Treffert has made since the late 1980s, and many others have followed suit.
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 book published in 1866. And in a short 1870 paper, he is quoted as using the term "idiot savant." Here it is (spelling from original):
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 idiot savant; the useless protrusion of a single faculty, accompanied by a woful general impotence.Seguin's use of "idiot savant" did not pass unnoticed in the literature. For example, in the BMJ in 1875, George W. Grabham quotes and takes issue with Seguin's views (spelling from the original):
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.It's possible Seguin was not the first to use "idiot savant" but he does get this honor in the online OED, which quotes Seguin's 1870 paper but does not mention or quote Langdon Down.
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.
In a footnote, Spitz (1995) 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.
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 h-indexes. 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 here).
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).
References:
HOWLIN, P. (2012). Understanding savant skills in autism Developmental Medicine 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 BMJ, 1 (733), 73-76 DOI: 10.1136/bmj.1.733.73-a
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 American Journal of the Medical Sciences, 59 (129), 518-5197 comments: Monday, January 03, 2011 Are autistic people lost in space?
In one short paper, Elizabeth Pellicano and colleagues claim to demolish Simon Baron Cohen's systemizing account of autism. They also conclude that autistics' strong visual search and probabilistic learning abilities fail in large-scale space, ergo in the real world.
The press release 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.
1. What did they do? And what didn't they do?
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 room-size visual search task. Except they ignored this possibility, instead choosing what they themselves call a test of "non-visually guided foraging."
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.
From Figure 1, here is what Pellicano et al.'s foraging task looked like:
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).
The task instruction was to find the red target as quickly as possible.
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.
They left out almost every measure they previously deemed important to assess performance on foraging tasks in large-scale space (e.g. here, here, here).
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 here).
Another of their own previous findings 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. here), but in Pellicano et al., they did. If the goal wasn't simply to assess spatial memory, why not match groups on this ability?
2. What did they find?
Their main measure was sensitivity to probability in the foraging task which, ignoring their previous work, 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 (here is one). 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%.
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., less repetitive means less systematic ergo is now yet another autistic deficit.
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.
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.
3. What does it mean?
Well first, it's an interesting task, even if it's not a visual search task.
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 "shoes in the bedroom, apples in a supermarket, or a favourite animal at the zoo" ergo can't achieve independence.
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.
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.
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.
Autistics should be notorious by now for noticing aspects of tasks that nonautistics don't (fantastic example at IMFAR last year), and for exploring more possibilities than nonautistics (examples here and here). Writing this off as a bad thing, as autistics being lost in space or some dire equivalent, is shortsighted to say the least.
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 also by Baron-Cohen, is too rigid and limited a model to encompass how autistics atypically detect and explore environmental regularities.
Reference:
Pellicano E, Smith AD, Cristino F, Hood BM, Briscoe J, ">Proceedings of the National Academy of Sciences of the United States of America PMID: 21173235
Postscript: You can find a large-scale space, true-to-life, real-world (and wonderful) embedded figures task performed by an autistic child here.
Post-postscript: This post has been included in the 83rd edition of Encephalon.20 comments: Questions about higher education in the era of autism politicsStrange way to start the year. And maybe this recent search from the University of Southampton 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.
And if it is, is the question being asked about all autism researchers, or only autistic ones?2 comments: Sunday, October 10, 2010 Are autistic people natural born criminals?
Associations between autism and notorious violent crimes are easy to find--they seem almost automatic. Here is one example, and another, and one more. There seems to be an entire book on this theme, though I haven't read it.
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 here, here, here, here) fitting this prediction have been highlighted, while the few dissenting views (e.g. here and here) have had little effect.
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 here, here, here.
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.
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.
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.
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:
the average proportion of convictions found in our sample (1.30%) is very comparable to that in the general male population (1.25%)As to kinds of crimes:
By far the most common convictions in Aspergers former patients were for property offences [...] Offences against life and physical integrity were rare.And while data for the general population were limited:
qualitative assessment of offence types in Aspergers former patients suggests that they do not differ radically from those in the general publicBecause this point needs to be underlined, here is more from Hippler et al.'s discussion:
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.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).
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 (here, for example).
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:
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.According to near-universal assumptions, 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.
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.
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%).
Hippler et al. provide a competent overview of the relevant literature (including this recent finding), as well as a fair discussion of their study's limitations. Under the banner "Wider Implications," they write:
There is a public perception that individuals with mental health diagnoses in general, and Aspergers syndrome in particular, present a threat to the general public. We contend that, based on the follow-up data from Aspergers original cohort, as well as other studies, this perception is wrong.Even wider implications include the neglected question of how being regarded as just naturally violent and dangerous to others, as natural born criminals, has affected the outcomes of autistics.
Reference:
Hippler, K., Viding, E., Klicpera, C., s Original Cohort Journal of Autism and Developmental Disorders, 40 (6), 774-780 DOI: 10.1007/s10803-009-0917-y
Postscript: This post has been included in the 43rd edition of Scientia Pro Publica.24 comments: Tuesday, August 31, 2010 Are you high or low functioning? Examples from autism research
If you are autistic and ever venture or are pushed into public, a near-certainty is that you will publicly be ranked and classified by total strangers.
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 (I've been claimed to have both). 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.
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.
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 numerous papers I've recently looked at.
What does level of functioning mean in autism research?
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.
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.
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.
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.
With this in mind, here are some examples.
Example 1
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."
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 Ivar Lovaas' famous ABA study--you are too low-functioning.
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.
Example 2
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.
Vineland composite scores in this sample range down to 25. Two of the Vineland domain scores range down to 20. In a recent population-based study (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.
Example 3
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.
Example 4
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).
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.
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.
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.
Conditional examples 5 and 6
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 (from Kanner's original 11) or 150 (from Kanner's 1956 follow-up) to be ranked as high-functioning. That means you have to be better than the 99th percentile.
Now what?
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.
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.
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.
Futher reading
The late Ivar Lovaas expressed his views about levels of functioning in autism in one of the major ABA manuals; this is quoted here. From a different point of view, this article 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" here and here.
References:
Akshoomoff N, Lord C, Lincoln AJ, Courchesne RY, Carper RA, Townsend J, ">Journal of the American Academy of Child and Adolescent Psychiatry, 43 (3), 349-57 PMID: 15076269
Annaz D, Karmiloff-Smith A, Johnson MH, ">Journal of experimental child psychology, 102 (4), 456-86 PMID: 19193384
Farley MA, McMahon WM, Fombonne E, Jenson WR, Miller J, Gardner M, Block H, Pingree CB, Ritvo ER, Ritvo RA, ">Autism research : official journal of the International Society for Autism Research, 2 (2), 109-18 PMID: 19455645
Klin A, Saulnier CA, Sparrow SS, Cicchetti DV, Volkmar FR, ">Journal of autism and developmental disorders, 37 (4), 748-59 PMID: 17146708
Postscript: This post has been included in the 40th edition of Scientia Pro Publica.12 comments: Wednesday, August 18, 2010 Making autism research history: The Preschool Autism Communication Trial
Some months ago, Jonathan Green and his colleagues simultaneously published (in the Lancet) and presented (at IMFAR 2010) 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 well-established in non-autism non-ABA areas. The upshot is an autism early intervention trial whose results are worth serious consideration and which is unprecedented in this respect.
Via the PACT website, you can find the Lancet 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.
I've previously written about the PACT as an anomaly in autism intervention research. 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).
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.
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 here.
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 Lancet, you will find an outstandingly clear CONSORT flowchart of participants as well as an intention to treat analysis and mixed results.
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.
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 what exactly the ADOS is assessing--a result which deserves a lot of attention.
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 widely-publicized diagnostic category results from another recent RCT involving a small sample of much younger children receiving more than two years of intervention.
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 Lancet paper, depending on how your brain works, you should rapidly find at least one minor error in the data (I can't help it...).
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 like so many other autism interventions, 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 and learning 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.
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 Lancet:
These findings suggest that the optimistic results from other studies should be reassessed.Yes--good experimental design means that you risk not having your biases confirmed. 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.
There is a Lancet editorial about the PACT RCT, written by two NIH scientists. Here is one thing they point out:
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.Here is another, and they get the last word:
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.
References:
Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., Le Couteur, A., Leadbitter, K., Hudry, K., ">The Lancet, 375 (9732), 2152-2160 DOI: 10.1016/S0140-6736(10)60587-9
Spence, S., ">The Lancet, 375 (9732), 2124-2125 DOI: 10.1016/S0140-6736(10)60757-X4 comments: Monday, May 17, 2010 The circadian prison
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.
As it turns out, autistics are considered to have circadian clocks "gone bad." 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:
Disturbed sleep-wake patterns and abnormal hormone profiles in children with autism suggest an underlying impairment of the circadian timing system.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.
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.
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 short case study about an autistic whose free-running was remediated by melatonin treatment.
Of course nonautistics take melatonin too. They put themselves through sleep hygiene routines and they go to sleep clinics in droves. They suffer terribly from shift work and jet lag, and inadequate efforts to eradicate this suffering are everywhere, from new drugs to new iPhone apps.
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 return them there and keep them there. The schedule may be changed, with effort, but the prison remains the same.
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.
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.
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.
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, here) 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 cognitive versatility in autism, which would result in perceived environmental cues affecting sleep-wake cycles in an optional rather than mandatory way.
The renowned Bora Zivkovic, who unlike me knows all about circadian clocks, recently wrote that--unlike me--typical people have "have complex circadian systems that are easy to get out of whack" with dire consequences:
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.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.
References:
Bourgeron, T. (2007). The Possible Interplay of Synaptic and Clock Genes in Autism Spectrum Disorders Cold Spring Harbor Symposia on Quantitative Biology, 72 (1), 645-654 DOI: 10.1101/sqb.2007.72.020
Glickman, G. (2010). Circadian rhythms and sleep in children with autism Neuroscience ...papers presentations ...for the recordAlmost everything about me on Wikipedia is wrong.
what I do (continued)@autismcrisis (Twitter)Google scholar citationsResearch group pageDoctorat honoris causaÀ la défense des droits des personnes autistesL'Ordre de MontréalMatson sagaMy Matson saga tweets (2010-present): here, here, here, here, hereindie neuroblogs
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"I'm very aware of my own shortcomings and failings as a researcher, and how much better I could have done, and how much better I should be doing."blog archive 2018(1) March 2018(1)Ethics in autism journalism: an open letter to Spe... 2017(1) November 2017(1) 2015(1) December 2015(1) 2012(2) April 2012(2) 2011(2) January 2011(2) 2010(8) October 2010(1) August 2010(2) May 2010(1) February 2010(4) 2009(23) December 2009(1) October 2009(1) July 2009(4) June 2009(1) May 2009(6) April 2009(3) March 2009(2) February 2009(1) January 2009(4) 2008(16) December 2008(5) November 2008(4) October 2008(2) July 2008(1) June 2008(3) February 2008(1) 2007(24) November 2007(1) August 2007(1) July 2007(3) June 2007(1) May 2007(1) April 2007(1) March 2007(5) February 2007(5) January 2007(6) 2006(33) December 2006(7) November 2006(20) October 2006(6)linksAutistic SuccessCanLIIInformed Health ChoicesHandbook of Field ExperimentsCochrane HandbookEQUATOR NetworkStudents 4 Best EvidenceJames Lind LibraryTesting TreatmentsMorton Gernsbacher's LabLaurent Mottron's LabArmando Bertone's LabTyler Cowen's pageNo Autistics Allowedblogs I read[citation needed]Absolutely MaybeAndy FugardarXiv blogBishop BlogBPS Research DigestChris BlattmanEvolving ThoughtsImpact EvaluationsLanguage LogMarginal RevolutionMind HacksNeurocriticPractical EthicsRunmanStatistical ModelingWiring the Brainethics of ASANMy ASAN tweets (2009-present): heresearch this blogtotal pageviews
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