Thursday, 24 January 2013

Optimal outcomes and autism continued

My word. That paper by Prof. Deborah Fein and colleagues* (open-access) which I blogged about last week has certainly made a splash both in the media and cyberspace. Opinions abound it seems about what the paper said, what the paper didn't say and what the implications of an 'optimal outcome' (OO) group might mean for autism spectrum disorders, its description, its nature and how it is perceived more generally.

I've followed quite a few of the opinion pieces on the Fein paper which have ranged from caution to enthusiasm and everything in-between. Some of the discussions it seems, have actually tended to drift away from what was actually reported in the paper into areas such as semantics and use of the words 'grow out of'. Even in one piece discussion of 'cure' (see here) which does rather stretch the Fein findings a little.

Whilst reading this body of literature, I've been constantly reminding myself of the accompanying editorial by Sally Ozonoff** and the very level way that she has presented/discussed the Fein results; well worth a read in my opinion, as is the brief response from Prof. Uta Frith on the paper (see here).

But whilst all attention was focused on the OO group paper by Fein, another smaller paper which included Fein as part of the authorship group was also published last week by Naigles and colleagues*** titled: Residual difficulties with categorical induction in children with a history of autism.

I don't necessarily want to go through this paper with a fine-toothed comb or anything because (a) I know very little about categorical induction (see here for a brief description) and (b) I have very little professional interest in categorical induction. What I perhaps do want to stress though is the suggestion from the Naigles paper - which looked at categorical induction skills in an OO group compared also with an autism and asymptomatic control group - that "even very high functioning individuals with autism, or with an OO, still exhibit residual difficulties with category knowledge and extension". I'm not by the way, getting into any debates about 'functioning' and autism.

What are the possible implications of the Naigles findings? Well, without putting words into anyones mouth and accepting that there is still more to come from the Fein OO research, one possible suggestion is that losing the diagnosis of autism - 'recovering' if I am to use the words of Dr Ozonoff - is not necessarily an absolute thing. Or in other terms, just because the diagnostic label of autism goes, does not imply that the difficulties around autism suddenly vanish into the ether.

In my post last week, I kinda eluded to the fact that autism - the autisms - or rather the presentation of autism in real-life is not necessarily just the sum of the dyad (social affect + restricted interests/repetitive behaviours). One can often also see lots of peripheral signs and symptoms, as well as heightened risk of various comorbidities, both behavioural and somatic, which can and do impact on overall quality of life. That and the fact that autism is a developmental condition, so even if symptoms are no longer present in a clinically recognisable fashion for whatever reason, still implies that development was once 'disrupted' and at the moment, no-one is able to adequately speculate on any longer term effects that this disruption may have.

What the Fein OO and Naigles findings also stress is that autism, the label autism, is just that: a label. That label, though subject to change this year (2013), is a diagnostic label and as with many generalised, compartmentalising diagnostic labels, can never really provide a true, accurate and complete reflection of all the people carrying that label, with all their heterogeneity.

A few final words are needed about those 34 children/young adults and their families in that optimal outcome group originally described by Fein. In among all the discussions on 'growing out of', 'recovery' et al and the often disapproving ways that some commentators have implied in their writings about this group, we should remember that these individuals represent perhaps one of the most important cohorts in autism research at the moment. We therefore need to show them a little more respect...

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* Fein D. et al. Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry. January 2013.

** Ozonoff S. Editorial: Recovery from autism spectrum disorder (ASD) and the science of hope. J Child Psychol Psychiatry. 2013; 54: 113-114.

*** Naigles LR. et al. Residual difficulties with categorical induction in children with a history of autism. J Autism Dev Disord. January 2013.

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ResearchBlogging.org Naigles LR, Kelley E, Troyb E, & Fein D (2013). Residual Difficulties with Categorical Induction in Children with a History of Autism. Journal of autism and developmental disorders PMID: 23321802