Edging ever closer to the ICF core sets for autism

Yet another post about the ICF core sets for autism is offered up today, and the findings reported by Sven Bölte and colleagues [1] (open-access available here) detailing some consensus...

OK, a quick reminder of what the ICF core sets for autism were designed for: "To capture this complex melange of functioning experiences beyond the diagnosis, the ICF offers a tool to describe the lived experience of a person with ASD [autism spectrum disorder] in a comprehensive and standardized way." Melange? More people should use the world melange methinks.

I've discussed the ICF core sets for autism a few times on this blog (see here and see here and see here) and the various developmental processes leading up to the consensus on the core sets. This has included talking to many different groups of people about what they felt was important when it comes to autism outside of just the presentation of the core diagnostic characteristics.

The Bölte paper seems to be heading towards the end-game of the ICF core sets for autism development and their use of "20 international autism spectrum disorder experts" who "applied an established iterative decision-making consensus process to select from the candidate categories the most relevant ones to constitute the autism spectrum disorder Core Sets." Alongside decisions on a Comprehensive and a Brief (Common) ICF Core Set for autism, authors also decided that it would be useful to have some age-appropriate brief sets too: "a preschool set (aged 0–5 years), a school-age set (aged 6–16 years), and an older adolescent and adult set for individuals 17 years old and older."

I'm not going to say too much more about the Bölte findings because there really isn't too much more to say. Readers are invited to peruse the various descriptions included and make their own decision on their relevance or not. I will however raise one point covered by the authors regarding their study limitations: "despite efforts to achieve a broad representation of disciplines, some professional groups may have been underrepresented." Sadly for example, I see little professional representation when it comes to important things like gastrointestinal (GI) issues that are very much over-represented when it comes to autism (see here) and can have a real impact on day-to-day functioning (see here). On the more positive side of things however, the all-rounder than is the occupational therapist (OT) seemed to have had quite a bit of representation and input, which is really rather good to see (see here).

It looks like a new dawn is approaching when it comes to how we characterise autism beyond just the core dyad/triad...

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[1] Bölte S. et al. The Gestalt of functioning in autism spectrum disorder: Results of the international conference to develop final consensus International Classification of Functioning, Disability and Health core sets. Autism. 2018 Jan 1:1362361318755522.

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