Producers and consumers of autism research: never the twain shall meet?

I was interested to read the paper by Elizabeth Pellicano and colleagues [1] (open-access) investigating "the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners". Quite a few results are reported including the idea that researchers "were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process".

I'm made of wax, Larry. What are you made of?

I believe this research links into a previous study by the same authors [2] which has also been discussed on this blog (see here) asking the question: what should autism research focus upon? The results on that occasion implied that depending on who was asked: "There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants". As an addition to that work, I'll take this opportunity to direct you to the paper by Jina Jang and colleagues [3] reporting that most autism research seems to be centred on the "younger population".

The most recent Pellicano work is again open-access but a few details are worth mentioning:

• Two instruments/methods were reported on: (i) the results of an on-line questionnaire completed by over 1500 respondents "aged 18 and over who could be divided into four key stakeholder groups: autistic adults, immediate family members, practitioners and researchers", and (ii) focus groups / individual interviews, again including people representative of those key stakeholder groups (albeit much reduced in terms of participant numbers). The idea being to ask "both researchers and members of the autism community about their experiences of engagement in research".
• Several themes are reported based on either researcher views or autism community views. "The majority of autistic adults, parents of children with autism and professionals wanted to be more involved in the research process". A nice position for autism researchers to be in by all accounts, but... "community members felt that researchers aren't proactive enough" when it came to approaching the autism community to take part in research. Even when taking part in autism research there were "largely asymmetric interactions with researchers" according to the autism community in terms of research wanting/needing study volunteers but not much after that in terms of engagement.
• Researchers also had a few issues with the whole research engagement process too. Some wanted a more inclusive relationship when it came to research engagement with the autism community. But, there was also some caution about how far this engagement should go insofar as "they [the autism community] might not be the appropriate people to decide what and how issues should be researched and... it risks “politicizing” scientific issues".
• Perhaps of potential importance to how you are reading about this study was some mention on how some members of the autism community felt that autism research was "indigestible" when it came to writing up in science papers and the use of "scientific jargon". One of the first thoughts that crossed my mind on reading such results was an article I'd read not so long ago by Steven Pinker (see here) and what this could mean for peer-reviewed science writing. That and the value of science blogging...
• Alongside quite a few other snippets of potentially important information, the authors conclude that: "There is no ‘one size fits all’ approach to community engagement" (no real surprise there) but with a little innovation, autism researchers and the autism community can reach some middle ground mutually beneficial to both camps. 

What's more to say on this topic? Well, not a great deal really, aside from that which Pellicano et al cover in their collective papers on this topic and where autism research should perhaps be heading. Of course, I would advocate for more people to get interested and involved in science - autism science - even if this means spending a few hours a week looking through something like PubMed or joining social media sites like Twitter and following those interested in the various autism research being produced. The caveats to that are that: (i) science is all about probability not absolutes, (ii) not all science is equal, and (iii) when it comes to autism, the issues of heterogeneity and all that enhanced risk of various comorbidity, need to be kept in mind when reading about any 'scientific breakthrough' or 'wonder-study' which purports to definitively answer any research question.

Insofar as resources, at least here in the UK, where people can participate in autism research, the National Autistic Society (NAS) hold a directory of research projects looking for participants (I assume other countries have similar resources). I do wonder if any such international database might exist which could act as a central autism research point drawing on resources like the US Clinicaltrials.gov facility and other research databases for those wishing to take part?

Finally, blog. Yes, you heard me correct. People with autism, parents, professionals and even researchers, put pen to paper and start your own blog... it's normally free and pretty easy to do once you get the hang of it. Who knows, perhaps one day, every study will have its own blog or blog entry.

A little song to close... Danke Schoen.

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[1] Pellicano E. et al. Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study. PLoS ONE. 2014; 9: e109946.

[2] Pellicano E. et al. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. 2014 Oct;18(7):756-70.

[3] Jang J. et al. What are the ages of persons studied in autism research: A 20-year review. Research in Autism Spectrum Disorders. 2014; 8: 1756–1760.

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Pellicano E, Dinsmore A, & Charman T (2014). Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study. PloS one, 9 (10) PMID: 25303222