There is something seriously wrong with the distribution of autism research funding.

The most recent report of the Interagency Autism Coordinating Committee (IACC) in the United States reported that fully half of all autism research funding continues to go to the area of biology and risk factors (Office of Autism Research Coordination, 2017).  For comparison, only 2% of all research funding was awarded to projects in the “lifespan” area.  A similar situation prevails in a number of other jurisdictions.[1]

This disparity can only be described as bizarre.  In North America, all the major groups in the autism field – autistic adults, researchers, professionals, and family members – agree that basic research is less important than applied research (Frazier et al., 2018).  Again, similar results have been found in other jurisdictions (Pellicano et al., 2013, 2014).  How does the area everyone agrees is least important somehow keep getting the most funding?

There’s likely many reasons.  There may be biases favouring biomedical projects built into granting agencies.  It may be easier for researchers to keep doing what they’ve always been doing, rather than learning new skills.  Regardless of the cause, one thing is clear: we need to reform the current system.

Besides funding, we also need to amend our use of language.  I’ll probably write about this issue at greater length later, but it’s extremely problematic that researchers still casually toss about deeply stigmatizing terms (“disordered,” “deficient,” etc.) to describe a population that is very vulnerable to mental health challenges.  Worse, many researchers don’t even seem to think to question these terms.  If you can believe it, I was once chastised for engaging in “social advocacy” by objecting to the term “disorder,” as though stating that someone is “disordered” is somehow an objectively true statement and not itself a form of social advocacy!

Clearly, change is needed.

Now, one excellent way of reforming the system might be to bring autistic adults into autism research.  While all communities may favour applied research over basic science, the community of autistic adults has been particularly vocal in its pursuit of reform.  Furthermore, both autistic adults and family members have a deeply personal stake in the outcomes of autism research, which arguably makes them more invested than the average researcher in ensuring that autism research funding is spent appropriately.

Hitherto, most of the efforts to engage community stakeholders in autism research have established collaborations between autistic adults, family members, and specific research teams.[2]  The research team recruits a group of family members and/or autistic adults who serve as consultants, offering feedback about research goals and methods.  These collaborations are certainly an impressive step forwards, and I applaud them, but their ability to change the direction of autism research is, unfortunately, limited.  The only researchers who establish these collaborations tend to be those who are already engaged in the types of applied research favoured by the community.

There’s also groups like the IACC, but those don’t seem to be working either.

I believe that bringing important stakeholders into the research process is still the path forwards, but we must move it to another level.  We must give autistic people a voice in the bodies that actually exercise power over research: granting agencies and journals.  Without securing grants, researchers cannot conduct large studies (and autism research can be particularly expensive), and without the approval of journal editors and peer reviewers, researchers cannot publish their findings.

To be clear, I am not proposing to stack granting agencies and journals with a bunch of naysayers who will immediately deny funding and journal space to all biomedical projects.  However, given the immense power that is held by granting agencies and journals, I believe that a meaningful role for community stakeholders in granting and publication decisions would quickly be felt by researchers, and that researchers would thereafter work to adjust their proposals to respect the priorities and interests of community stakeholders.  I’m certainly confident that researchers would be happy to make easy but crucial changes to their use of language, particularly if explicitly prompted to do so by grant agencies and journals.

I am also not proposing that autistic people and family members should be given positions exactly equivalent to academic peer reviewers.  Many autistic people do have a great deal of expertise (Gillespie-Lynch et al., 2017), but academic papers are invariably dull, jargon-ridden, and technical.  Even if a layperson can read the article, they will probably lack the specialized knowledge to meaningfully evaluate the quality of the science.  For that matter, even an academic from a slightly different field will probably be unable to evaluate the science.  Obviously it would be nice to have more autistic people doing autism research, and there are a growing number of us now, but not nearly enough for recruitment of autistic people as academic peer reviewers to be a practical solution.

However, earlier this year, I was delighted to learn that the new journal Autism in Adulthood has chosen to give autistic people a role in its review process.  The journal does not make autistic people into academic peer reviewers in the traditional sense, but rather invites them to review articles with a focus on their respectfulness and helpfulness.  I sincerely hope that Autism in Adulthood will serve as a model for our field, and that other journals, and granting agencies, will soon establish similar systems.

 

What’s your opinion?  Comment below!

Footnotes

[1] A similar situation prevails in other jurisdictions; in the United Kingdom, between 2007 and 2011, 71% of autism research funding went to the combined areas of “Biology, Brain, and Cognition” and “Causes” (Pellicano et al., 2013).  In Canada, between 2007 and 2010, 43% of the government’s autism research funding went to biomedical investigations (Krahn & Fenton, 2012).

[2] Or, occasionally, larger centres.

References

Frazier, T. W., Dawson, G., Murray, D., Shih, A., Snyder, J., & Angela, S. (2018). Brief report: A survey of autism research priorities across a diverse community of stakeholders. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-018-3642-6

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8: 438. https://doi.org/10.3389/fpsyg.2017.00438

Krahn, T. M., & Fenton, A. (2012). Funding priorities: Autism and the need for a more balanced research agenda in Canada. Public Health Ethics, 5(3), 296–310. https://doi.org/10.1093/phe/phs027

Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). (2017, October). 2014-2015 IACC autism spectrum disorder research portfolio analysis report. Retrieved from https://iacc.hhs.gov/portfolio-analysis/2015/index.shtml

Pellicano, L., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping autism research in the UK. London, UK. Retrieved from http://discovery.ucl.ac.uk/10017703/

Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627