Friday, 28 October 2016

The allure of autism for researchers

Data on $K spend on neurodevelopmental disorder research by NIH: from Bishop, D. V. M. (2010). Which neurodevelopmental disorders get researched and why? PLOS One, 5(11), e15112. doi: 10.1371/journal.pone.0015112

Every year I hear from students interested in doing postgraduate study with me at Oxford. Most of them express a strong research interest in autism spectrum disorder (ASD). At one level, this is not surprising: if you want to work on autism and you look at the University website, you will find me as one of the people listed as affiliated with the Oxford Autism Research Centre. But if you look at my publication list, you find that autism research is a rather minor part of what I do: 13% of my papers have autism as a keyword, and only 6% have autism or ASD in the title. And where I have published on autism, it is usually in the context of comparing language in ASD with developmental language disorder (DLD, aka specific language impairment, SLI). And, indeed in the publication referenced in the graph above, I concluded that there was disproportionate amounts of research, and research funding, going to ASD relative to other neurodevelopmental disorders.

Now, I don’t want to knock autism research. ASD is an intriguing condition which can have major effects on the lives of affected individuals and their families. It was great to see the recent publication of a study by Jonathan Green and his colleagues showing that a parent-based treatment with autistic toddlers could produce long-lasting reduction in severity of symptoms. Conducting a rigorous study of this size is hugely difficult to do and only possible with substantial research funding.

But I do wonder why there is such a skew in interest towards autism, when many children have other developmental disorders that have long-term impacts. Where are all the enthusiastic young researchers who want to work on developmental language disorders? Why is it that children with general learning disabilities (intellectual retardation) are so often excluded from research, or relegated to be a control group against which ASD is assessed?

Together with colleagues Becky Clark, Gina Conti-Ramsden, Maggie Snowling, and Courtenay Norbury, I started the RALLI campaign in 2012 to raise awareness of children’s language impairments, mainly focused on a YouTube channel where we post videos providing brief summaries of key information, with links to more detailed evidence. This year we also completed a study that brought together a multidisciplinary, multinational panel of experts with the goal of producing consensus statements on criteria and terminology for children’s language disorders – leading to one published paper and another currently in preprint stage. We hope that increased consistency in how we define and refer to developmental language disorders will lead to improved recognition.

We still have a long way to go in raising awareness. I doubt we will ever achieve a level of interest to parallel that of autism. And I suspect this is because autism fascinates because it does not appear just to involve cognitive deficits, but rather a qualitatively different way of thinking and interacting with the world. But I would urge those considering pursuing research in this field to think more broadly and recognise that there are many fascinating conditions about which we still know very little. Finding ways to understand and eventually ameliorate language problems or learning disabilities could help a huge number of children and we need more of our brightest and best students to recognise this potential.

4 comments:

  1. As a researcher and clinician I am often baffled by some parents stating they are disappointed that their child received a SLI diagnosis or other instead of an autism diagnosis. However, I can understand their disappointment. Autism is often portrayed in the media and most people have at least heard about it. So for a parent I can imagine that it is easier to deal with something known rather than an obscure condition only clinicians know about. Furthermore, there has been in the last years a movement for the portrayal of autism not as a “disorder” but as a different way of functioning and there has been considerable lobbying from parents and researchers for a reconceptualisation of ASD towards this “non-pathological” view. Also, the amount of funding and services a child with a non-ASD diagnosis receives in my country is ridiculously low compared to what a child with ASD would receive.

    Because of this and other factors, I think that autism currently occupies a very privileged place in psychiatric research and that there are unprecedented lobbying efforts to shape research to the needs and views of autistic people and parents (e.g Pellicano et al., 2013). I think that this is mostly a good thing but it worries me that these efforts could be detrimental for other disorders given that the amount of funding and researchers is limited. Also, I am extremely concerned that this lobbying, combined with the loose diagnostic criteria for autism (especially after DSM 5) lead many clinicians to choose, when in doubt, to give the more funded and popular diagnosis instead of a more obscure one. This will lead to an increased heterogeneity in the autism community, which in turn, if this community is involved in shaping research, will lead to research on an always broader and more loosely defined condition and will slow scientific and clinical progress. In that regard, while I think your campaign for language impairments very relevant and needed, maybe a campaign to reshape autism to a better defined condition with more stringent diagnostic criteria would be more useful.

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  2. Human beings, especially researchers, are problem-solvers and autism is an intriguing conundrum that has taxed great minds for decades. There is considerable cachet attached to researching a puzzling condition that appears to have consistently defeated those intellects.

    Autism is a puzzle of course, because it’s simply a label for a cluster of behavioural features that could have a whole host of different causes in different people - including SLIs. But autism is still widely perceived as an enigmatic, elusive unitary medical condition the aetiology of which will yield only to an army of researchers funded by the equivalent of a king’s ransom.

    What we really need is an army of researchers looking at each piece of the puzzle that is typical and atypical child development; only then will we begin to see the big picture that will explain some of the apparently intractable mysteries we’ve been tackling from the wrong angle.

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  3. I tried unsuccessfully to recruit children with language impairments into my dissertation study back in 2011/2012. I found it substantially easier to recruit children with autism in my research. Parent-driven organizations that makes the autism community accessible to researchers. I think that awareness campaigns and parent groups do have an impact on research objectives, funding, and recruitment opportunities. It ends up being a circular problem where awareness campaigns, communities, researchers, funding groups, and other organizations all drive research priorities together. This same issue happens with medical conditions like cancer where research priorities don't always line up with public health impacts for many different reasons.

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