Monday, 29 April 2019

"Gaps in current autism research". What the great and good think...

I would encourage readers to have a good look through the commentary paper by David Amaral and many, many colleagues [1] discussing the important question: what's missing from current autism research?

Published in "advance of the 2019 INSAR Conference in Montreal, Quebec, Canada", the annual autism conference (see here) which starts later this week (1st May 2019), the commentary provides some details on where the gaps seem to be when it comes to autism research. Various views are provided by some of the great-and-the-good of autism research,

Lots of 'gaps' are highlighted, many of which have been discussed on this blog down the years. Things like: "the failure to take into account the heterogeneity of the autism spectrum disorder (ASD) category", the relationship between autism and mental health conditions, intervention, aetiology, "novel, efficient diagnostic processes", longitudinal research studies, early biomarkers, the use of neural stem cell research, ageing and autism, parenting and autism, self-injury and autism, autism and the criminal justice system, "Minimally verbal autistic people and those with severe autism who are overlooked across all stages of development and inquiry", "Distinguishing autism in intellectually able adults from conditions, such as bipolar disorder, personality disorders, and schizophrenia" and lots more besides are considered. All represent gaps which require much more investment and study.

The Amaral paper got me thinking what my response to such a question would be. Based on my 'for what their worth' musings down the years, I could probably suggest two primary issues that stick out: (1) autism is a label that describes symptoms/behaviours/traits but says little about how these manifest at an individual level; we need to come up with some way of expanding how we describe autism and what it actually describes as a plural condition, and (2) we need much more focus on translating research findings into real-life improvements. It's all well and good getting some fantastic research results that make big newspaper headlines, but for the child who is facing yet another school exclusion or for the adult living a life of seclusion and poverty for examples, what do such research findings do for them? This also includes translations covering detection, diagnosis, intervention, and a whole host of other things pertinent to improving quality of life of those diagnosed and their family and significant others. One particularly pressing part of this translation issue are the shocking figures on early mortality in relation to autism (see here) and the question of how they can be reversed.

The hows-and-whys of achieving such goals are a little more difficult. I do think autism research could learn quite a bit more from people like Prof. Gillberg and others who've talked for sometime about the concept of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations) (see here) and how autism rarely appears in some sort of diagnostic vacuum (see here). It could also do with listening more to lots of groups of people with a connection to autism: those who are autistic themselves, their parents and caregivers and other significant others, including siblings, and how they can help with the autism research agenda. And by listening I don't mean just attending to selected groups of people or those with the loudest voices. I mean listening to voices from across the entire autism spectrum [2], bearing in mind the oft-cited phrase: 'if you've met one autistic person, you've met one person with autism'.

Just before I leave this topic, I must also mention one thing that I don't wholeheartedly agree with that is highlighted in the Amaral paper: the notion from someone that "the genesis of autism spectrum disorder (ASD) occurs prenatally." The prenatal period is definitely important to autism; but there is ample evidence that the 'genesis' of 'some autism' is rooted long, long after the nine months that makes us (see here for example) or in some cases quite a bit before conception, pregnancy and onward (see here). In that respect, sweeping generalisations about autism - aetiology, life course, etc - are also perhaps something else that needs to be far less *seen* when it comes to the autism research agenda and the gaps that they can sometimes generate...

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[1] Amaral DG. et al. Gaps in current autism research: The thoughts of the Autism Research Editorial Board and Associate Editors. Autism Res. 2019 Apr 26.

[2] Russell G. et al. Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Mol Autism. 2019 Mar 1;10:9.

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