Monday, 22 April 2019

"less than half of participants mentioned autism in their identity descriptions"

One important point to make about the findings reported by Lily Cresswell & Eilidh Cage [1] is the participant number. It was small; including only 24 young people "recruited through mainstream secondary schools in London, UK" who were diagnosed with an autism spectrum disorder (ASD) and who were asked to participate in a study examining "the relationships between identity, acculturation and mental health in autistic adolescents." Small participant numbers means one has to be quite careful about making sweeping generalisations.

If that study aim - identity, acculturation and mental health - sounds a little bit like psychobabble to you, the long-and-short of it was to look-see whether there was a possible link between how young autistic people / people with autism see themselves ("the way a person understands and views him or herself, and is often viewed by others") and their self-reported mental health; also including the concept of 'autistic culture' into the research mix.

OK, first things first: autistic culture. From what I read, it kinda sits somewhere around the idea of 'neurodiversity' (see here) with culture defined as "a system of meanings through which people organise and make sense of their lives." The addition of the word 'autistic' to culture therefore means "building a culture around the ways of speaking, thinking, and acting that come naturally to autistic people." The authors liken autistic culture to deaf culture "with both being supportive communities focused on the distinctive issues and experiences related to being autistic or deaf." Noble intentions on both counts.

Study participants were given the Twenty Statements Task (TST) - "a measure used to assess how individuals define themselves using their own words" - and the Autism Identity Scale (AIS) which "looks at whether an individual aligns more to an autistic or non-autistic culture." Responses to these instruments and to the Strengths and Difficulties Questionnaire (SDQ) were captured and analysed.

Results: I should point out that the AIS used in this study is not exactly what one would call a 'mainstream' instrument. Indeed, the reference for it's development and use comes from a doctoral thesis which, as far as I can see, is the only reference at the present time. The authors talk about responses on the AIS being use to rank participants into one of four groups: "Marginalised (alignment to non-autistic culture)... Bicultural (alignment to both cultures)... Assimilated (alignment to neither culture)... and Separated (alignment to autistic culture)." I'm not altogether sure but I think some of those groupings and their descriptions mentioned by Cresswell/Cage might not be exactly the same as that talked about in the thesis from Jarrett (see page 20 of the thesis). The AIS by the way, purports to measure both "autistic (AIS1) and non-autistic (AIS2) acculturation."

Cresswell/Cage observed that: "Average scores on the AIS2 were higher than the AIS1, indicating autistic adolescents typically felt more aligned to non-autistic, than autistic, culture." Minus any sweeping generalisations, this meant that participants as a group were typically more inclined towards statements like "I feel that I fit in with other people who do not have autism" and "I would prefer my education to be at a school with and without people with autism" over and above "Being autistic is an important part of who I am" and "I would prefer my closest friend(s) to have autism." Again, I reiterate that no sweeping generalisations are to be made from such findings on the basis of such a small participant group. Also added to those alignment findings, researchers observed some potentially important connections to SDQ scores used as a proxy for self-reported mental health and wellbeing. Specifically that the "lowest scores [on the SDQ] were found in those who aligned themselves only non-to autistic culture (assimilated; n = 7)." This *could* be translated to mean that self-reported mental health and wellbeing was marginally better for those who identified with a specific culture and, in particular, non-autistic culture.

I kinda get the impression that the results garnered during this study weren't exactly what the authors were expecting. Indeed, as I've mentioned before on this blog, there is 'slant' towards the whole neurodiversity angle in other research from some of the authors of this study (see here and see here) which would have probably benefited from different results being observed on this most recent research occasion. Credit is therefore due to the authors for publishing their findings. The inclusion of phrases such as: "These findings suggest autistic adolescents should be encouraged to explore autistic culture and supported in constructing their identity" included in the paper poses a bit of a quandary because that's not entirely what the resultant data implied. I've seen similar things particularly where neurodiversity has been mentioned in the context of autism before (see here). Indeed when we are also told that "less than half of participants mentioned autism in their identity descriptions", one interpretation is that many participants see/saw themselves as so much more than the sum of a clinical diagnosis they've received at some point. I daresay others will have alternative explanations for such findings.

More study is required on this topic. More study around the issue of 'belonging' in the context of autism, and the potential 'positives' that belonging brings (see here), is something that stands out from the Cresswell/Cage findings. Insofar as the concept of autistic culture, well, we'll have to see. Much like the term 'autistic community' (see here) used on more than one occasion, the inference is that there's some universal 'one-size-fits-all' ethos that everyone on the autism spectrum should be adhering too. The reality however, is some much more varied and complicated, bearing in mind the oft-used phrase: if you've met one autistic person, you've met one person with autism (or words to that effect). Yes, people should be proud of themselves. Everyone should have a sense of self-worth, achievement and that word again, belonging. But as per the small scale results from Cresswell/Cage, that pride and identity does not necessarily have to mean aligning oneself according to the receipt of a clinical diagnosis...

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[1] Cresswell L. & Cage E. ‘Who Am I?’: An Exploratory Study of the Relationships Between Identity, Acculturation and Mental Health in Autistic Adolescents. J Autism Dev Disord. 2019. April 19.

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