Ethics in autism journalism: an open letter to Spectrum

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 two named autistic people in the article were subject to misrepresentation and a systematic exclusion of their voices. 

Unlike all others named and featured in the article, neither Kabie Brook nor Michelle Dawson was interviewed, neither was directly quoted, and neither was provided any links to their work or online profiles. 

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. 

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. 

Our goal is to bring this to the attention of Spectrum readers, so they may be better informed. We hope that Spectrum will improve 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.  

What history tells us about autism research, redux

In 2015 Autistica 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 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 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.

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 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.

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.

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 themselves—this 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.

Notes on autism and assisted dying

In the Carter decision, 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, Carter, and assisted dying here. 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 standards—standards 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 decision’s 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 SCC’s Carter 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. 

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.

Submitted to: External Panel on Options for a Legislative Response to Carter v. Canada, November 23, 2015, by Michelle Dawson, 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 Autistica on 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.

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.