Autistic in the UK

Before I forget how to blog again, some excerpts from a live Q & A I did in the UK recently, while at the Centre for Research in Autism and Education in London. I've corrected one typo. It was very hard to do but the questions were excellent.


Darren Sharif:

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?

Michelle Dawson:

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.

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.

Peter:

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?

Michelle Dawson:

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.

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.

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.

Kate:

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?

Michelle Dawson:

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.

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 Jonathan Green has conducted in the UK. 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.

Joe:

If you had the power to fund one new area of research what would it be and why?

Michelle Dawson:

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.

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.

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.

It is very fortunate that Jonathan Green and others, like Catherine Aldred, have not gone along with this trend, 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.

Peter:

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?

Michelle Dawson:

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."

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.

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.

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.

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.

Jean-Paul:

Do you think autism researchers and autism advocates could and should worker closer together?

Michelle Dawson:

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.

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.

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.

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!

Sammi:

Do you think the politics of the autism community gets in the way of progress sometimes?

Michelle Dawson:

I think there is very strong evidence of how autism politics (on every "side") has harmed autistics.

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.


There is more at the link. 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 Stephen Wiltshire's work. 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.

The idiot savant story

In a commentary epublished in March, about savant syndrome in autism, Patricia Howlin wrote:

In 1887 Langdon Down was the first to coin the term ‘idiot savant’

Howlin and several co-authors, including Sir Michael Rutter, wrote in a 2009 paper:

Down (1887) was the first to coin the term ‘idiot savant’

Here are Pam Heaton and Gregory Wallace from a major 2004 review:

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 1887

Darold 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 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.

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.

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.

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.

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 & Child Neurology DOI: 10.1111/j.1469-8749.2012.04244.x

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), 518-519