Thursday 13 September 2018

"The Importance of Adolescent Self-Report in Autism"

The findings reported by Jessica Keith and colleagues [1] provide the blogging fodder today and a rather important message about the value of self-report in the context of autism, but also with one or two caveats too.

The name of the research game was to investigate the "consistency of adolescent and parent reports of anxiety and auditory sensitivity in individuals with ASD [autism spectrum disorder]" as well as examine "their validity via comparisons with sympathetic arousal at baseline and in response to an auditory challenge." This, on the basis that anxiety is not an uncommon diagnostic bedfellow when it comes to autism (see here for example) and alongside, auditory sensitivity also having quite a long established relationship with some autism (see here).

As per the title of this post taken from the Keith paper - "The Importance of Adolescent Self-Report in Autism" - an important focus of the study was to look-see whether parental reports of anxiety and auditory sensitivity 'matched up' with self-reports from adolescents with autism themselves. Authors reported that they did to a degree, but that also self-report might also provide some greater depth: "demonstrating greater self-reported (than parent-reported) anxiety and sensory symptoms." Indeed authors concluded: "adolescents with ASD have a unique perspective on their internal experience, which can complement parent reports and provide a more comprehensive assessment of symptoms in research and clinical settings."

I don't think anyone should be too surprised that asking adolescents about their own experiences of anxiety, sensory issues or anything else is probably going to yield far more accurate results than proxy reporting or second-hand accounts alone. Indeed, in these days where more and more people diagnosed as being on the autism spectrum are offering up their own first-hand accounts of their experience of autism, this represents a good thing in terms of 'getting it right' when it comes to diagnosing and managing important and often life-affecting symptoms or clinical diagnoses such as anxiety.

Caveats? Well, yes. I'm all in favour of people self-reporting and providing valuable insight into their own experiences. What is slightly less appealing however is that such self-reporting is not a luxury shared by all on the autism spectrum. The lack of self-report coming say, from some under-represented parts of the autism spectrum (see here) can sometimes mean that 'autistic experiences' are skewed towards more 'able' (or should that be 'vocal') parts of the autism spectrum; this despite the oft-used phrase: if you've met one autistic person, you've met one person with autism (or words to that effects). A solution? How about devoting more research and clinical resources to 'enabling' those traditionally not thought to have the capacity for complicated self-report to do so? Indeed, a participatory solution would perhaps be the best step forward I think (see here).

Oh, and also bear in mind that it needn't be self-report versus parent-report when it comes to something like anxiety in the context of autism. Both viewpoints can provide something important [2] on the basis that individuals know themselves but parents also have quite a unique viewpoint of their children and their behaviour across their formative years...


[1] Keith JM. et al. The Importance of Adolescent Self-Report in Autism Spectrum Disorder: Integration of Questionnaire and Autonomic Measures. J Abnorm Child Psychol. 2018 Aug 2.

[2] Adams D. et al. Parent descriptions of the presentation and management of anxiousness in children on the autism spectrum. Autism. 2018 Aug 16:1362361318794031.


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