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.