ICF core sets for autism continued: what do experts think about autism?

Consider this post an extension of a previous discussion thread (see here) continuing the voyage of developing "International Classification of Functioning, Disability and Health (ICF; and Children and Youth version, ICF(-CY)) Core Sets for Autism Spectrum Disorder (ASD)."

This time around it is another paper by Elles de Schipper and colleagues [1] (open-access available here) providing the blogging fodder and specifically the stage two of their four stage project building up those core sets for how we might conceptualise functioning and health when it comes to the autism spectrum. So: "The objective of this study was to survey the opinions and experiences of international experts on functioning and disability in ASD."

Those experts included responses from over 200 professionals ranging from physicians (22%) to nurses (3%) and everyone in-between including some really worthwhile representation from the all-rounder that is the occupational therapist (OT) (20%). They were asked various questions pertinent to the development of the core sets for autism including aspects designed to cover the "bio-psycho-social of the ICF(-CY)" and questions around "the possible functional strengths in ASD and the... possible gender differences in functioning and disability."

The data presented provides a fascinating insight into what experts think about [childhood] autism derived from the extracted "8792 meaningful concepts." I don't want to plagiarise the whole document but some key points emerge:

• As perhaps expected, social interaction issues feature heavily when it comes to defining important items for the ICF; "complex interpersonal interactions" comes top in one category of definable codes followed not so far behind by "basic interpersonal interactions." Communication issues are also mentioned as, importantly, are motor issues e.g. "fine hand use." I've talked about motor issues and autism before (see here).
• When asked about "ASD-related skills and functional strengths", the notion of "attention to detail" was prominent as was: "A preference to work on repeated or monotonous tasks." Experts also recognised that a "Strong sense of morality (e.g., honesty, lack of judgmental attitude, etc.)" was also a functional strength with other keywords such as "Trustworthiness" and "Loyalty" following suit. I was also interested to see that "Mathematical abilities" and "Technical abilities (computer skills, engineering)" were also reported in this section (see Table 6). Personally I think we have to be quite careful about sweeping generalisations of people on the autism all being 'maths geniuses' given data suggesting the contrary (see here) even when information might "mainly [be] associated with higher functioning individuals." Likewise, technical abilities in computing or engineering although important for quite a few people on the autism spectrum should not necessarily define all autism or all future job prospects (see here).
• When it came to opinions about 'body structures' potentially pertinent to autism, it is interesting that although most experts heavily endorsed involvement of the brain - "structures of the nervous system" - quite a few also saw other body structures as being important. So: "structure of intestine" was mentioned by about 15% of experts and "structure of stomach" by a smaller percentage. Bearing in mind the array of experts quizzed about these core sets and their varied areas of work and expertise, the inclusion of the gastrointestinal (GI) tract will be a welcome one for quite a few people (see here).
• Gender differences in the presentation of autism also created some discussion. Of the 60% or so of experts who "reported gender-related differences in ASD" quite a few focused on the idea that "more externalizing behaviors among males and more internalizing behaviors in females" were notable. Indeed, that females may be more likely to be 'overlooked' as being on the autism spectrum as a function of being "better socially adjusted, showing more prosocial behaviors, communication skills and friendships than males." This perhaps accords with other findings in the research literature (see here) onwards to the idea of a female phenotype or more.

I would encourage readers to take some time to read through the latest article from de Schipper et al for the important information that it holds. As and when the development of the core sets is eventually finished, autism research and practice will probably be hearing a lot about them. I dare say that one day they may become fundamental to autism research and practice. In the meantime, I'll be keeping my eyes open for further peer-reviewed publications from this group on this topic; the expected next stage I think being 'a patient and caregiver qualitative study' and thereafter a 'clinical cross-sectional study'. Interesting times lie ahead for the core sets for autism as indeed applied to other labels too [2].

Music and something from arguably one of the most well-educated singers/bands ever... Stranger Than Fiction.

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[1] de Schipper E. et al. Functioning and disability in autism spectrum disorder: A worldwide survey of experts. Autism Res. 2016 Jan 8.

[2] de Schipper E. et al. Towards an ICF core set for ADHD: a worldwide expert survey on ability and disability. Eur Child Adolesc Psychiatry. 2015 Dec;24(12):1509-21.

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de Schipper E, Mahdi S, de Vries P, Granlund M, Holtmann M, Karande S, Almodayfer O, Shulman C, Tonge B, Wong VV, Zwaigenbaum L, & Bölte S (2016). Functioning and disability in autism spectrum disorder: A worldwide survey of experts. Autism research : official journal of the International Society for Autism Research PMID: 26749373