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Because this is supposed to be a blog about autism research, I thought it important to post about this study and whether all those pounds sterling being spent on autism research was actually making a difference to the day-to-day lives of people with autism, their families and significant others. This is a complicated area with all-manner of opinions so I tread carefully...
Based on the results of an on-line survey and "in-depth focus groups and interviews" some important themes emerged from the results:
- "What are the best ways to improve the life skills of autistic people?", "How can public services best meet the needs of autistic people?" and "How do autistic people think and learn?" consistently featured in the top three important research questions put to the various stakeholder groups (adults with autism or autistic adults, family members, practitioners and researchers). The question of "more research into co-occurring conditions" also featured across the groups, including some mention of sensory issues (and their mitigation) and gastrointestinal (GI) issues.
- There were also some not totally unexpected differences in responses too across the different groups. So for example: "Family members, practitioners and researchers - but not autistic adults - also prioritised treatments and interventions for autistic children".
- All stakeholders agreed that autism research tends to "focus upon children" rather than adults; quite a few parents it seems also opined that research "seemed to focus on more able or so-called high-functioning individuals and was therefore not applicable to their children".
- Another quote: "all stakeholder groups expressed disappointment with the emphasis on biomedical research, although researchers did so to a lesser extent". This was based on stakeholders being shown a pie chart of UK research funding between 2007-2011 with the lion's share being apportioned to "biology, brain and cognition" (56%). The authors note the concerns and how "funding across the different key research areas needs to be more balanced... with greater investment in research that assists with the day-to-day living with autism".
There is lots of other data included in this paper which I would encourage readers to digest. The key point derived from this report is that there is a place for autism research but stakeholders were really looking for future priorities to be directed towards research that "make[s] a difference to people's day-to-day lives".
Allowing for the fact that most autism research and autism researchers are, in my humble opinion, trying to make a positive difference to the lives of people with autism, I don't think anyone would really disagree with the findings from the Pellicano paper. Particularly given the pretty substantial financial and person-power resources which have been drafted into researching autism down the years and the quite limited returns received when it comes to what we know (or think we know) about the spectrum. I say that not to belittle the lifetimes of effort poured into autism, but rather that compared with say 20 years ago ask are we really 'significantly' further along when it comes to our knowledge about autism?
With my research hat on, I'd chime in with a few points to make. First, I'm happy to see that comorbidity ranks up there, allowing for autism research coming to terms with the fact that a diagnosis of autism is seemingly protective against nothing in terms of medical or psychiatric comorbidity as per the IMFAR chatter this year. If there is any one theme that crops up on this blog time after time after time, it is that comorbid conditions / symptoms can often have a profound effect on quality of life when it comes to autism (something I'll be talking about more in the coming weeks). Think anxiety, think depression, think GI issues as just a few examples, and some of them possibly connected. That comorbidity such as epilepsy when present has the potential for the most extreme negative outcome is also something to be research prioritised.
Second, I agree that more autism research needs to have day-to-day value in terms of enhancing quality of life and providing support and opportunities for all those on the autism spectrum. That being said, I don't necessarily disagree with the way funding has been spent in the UK or beyond with regards to it's focus on "cognition, sensory and motor function, computational science, co-occurring conditions, longitudinal studies, immume/metabolic/molecular pathways, neural systems and neuropathology" all falling under the heading of 'biology, brain and cognition'. I think for example, about the recent work on mitochondrial issues being related to autism (see here) or the suggestion that in amongst the 'autisms' (plural) there may be specific types of autism potentially amenable to very simple biological interventions (branched chain amino acids for example). My own area of research interest on dietary intervention perhaps being useful for some on the autism spectrum (see here) was an area which came top of another survey of research priorities back in 2005 (see here - scroll down to the presentation by Richard Mills titled: "Researching interventions in ASD and priorities for research").
If we moved our research focus too far away from these important areas of work, this would be tantamount to exacerbating the health inequality which already seemingly exists with autism in mind. In the same way that autism research is just pulling itself together on the topic of GI issues being over-represented in autism (see here again) for example, basic science is still needed to ensure that we continually question the nature of the autisms and ensure that all behaviour or physiology is not automatically ascribed to 'just autism' or 'just part of being autistic'. Basic science and day-to-day valued research can co-exist y'know...
Finally, with my amateur science writer hat on, I'm at the present time of writing helping to a formulate a piece on RDoC, the NIMH Research Domain Criteria and how that has started to shake-up psychiatry. I've talked RDoC before on this blog, and how the focus on research informing classifications over classifications informing research might potentially open up a whole new world of scientific investigation and practice. I'd like to think that autism research might also benefit from a similar shake-up where greater appreciation is given to the heterogeneity of the autism spectrum and the world of endophenotypes, subgroups, best responders (to intervention) and differential developmental trajectories (bloomers, optimal outcomers, et al) when it comes to how we view the label. Changing the way we do autism research, challenging our expectations of autism research, challenging our ideas of what the autisms are (and aren't) would seem to be sensible goals and perhaps would answer the question posed by Vivanti and colleagues [2].
So endth the lesson for today.... aside from drawing your attention to the paper by Mitchell and Locke [3] and the bigger picture when it comes to how the public at large view autism.
And then to some music... you gotta Keep 'Em Separated...
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[1] Pellicano E. et al. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. 2014. April 30.
[2] Vivanti G. et al. Predictors of outcomes in Autism Intervention: Why don’t we know more? Front. Pediatr. 2014; 2: 58. doi: 10.3389/fped.2014.00058
[3] Mitchell GE. & Locke KD. Lay beliefs about autism spectrum disorder among the general public and childcare providers. Autism. 2014 May 22. pii: 1362361314533839.
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Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom Autism DOI: 10.1177/1362361314529627
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