Saturday, 18 July 2015

Person with autism or autistic person?

Although it might seem like a bit of a distraction, I read with interest the paper by Lorcan Kenny and colleagues [1] (open-access) discussing the ways and means that we talk about autism here in Blighty. Some related media on the paper can be found here and here.

I mentioned the word 'distraction' because I'm sure that some people (many people?) might be wondering why we are discussing the various ways and means that autism is described when there is so much more for research to do in trying to improve the lives of those diagnosed as being on the autism spectrum. Indeed, saving lives may be more accurate in some cases. I would agree that the autism research agenda is pretty full when it comes to issues such as early identification, experimentally testing the myriad of interventions out there and how the various 'comorbidities' that seem to be over-represented alongside a diagnosis can impact on quality of life and what we can do about them. I'm also, however, of the opinion that the way we talk about autism can also impact on a person's life in important areas such as dignity, self-esteem and self-identity and such viewpoints may have important knock-on effects for people and society at large.

The Kenny paper is open-access so it requires little additional rambling from me. Continuing a theme of some of the authors looking to ask various stakeholders (people with autism / autistic people, parents, professionals) about facets of the autism research and practice landscape (see here and see here), they sought views "about the terms they use to describe autism." This was all done via an online survey so one has to be a little bit guarded about the quality of the results obtained, although some 3500 people did complete the survey and had their results included.

"The results clearly show that people use many terms to describe autism." No real surprises there considering the various groups that responded and the myriad of ways that autism has been described past and present. "The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups." Again, I'd be hard-pressed to say there was anything too novel there.

But: "The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents." Quite a bit of this seemed to touch on the idea of 'ownership' of the label and "one’s relative distance from autism." Further: "the closer one was to directly experiencing autism hour-to-hour, day-to-day, the more likely the community member endorsed the use of disability-first (rather than person-first) terms."

Various themes also emerge in the Kenny paper covering the ideas of 'natural diversity' and the use of "value-laden terms such as ‘disability’, ‘deficit’ or ‘disorder’, which imply that any difficulties experienced by autistic people are a result of them being ‘broken’ in some way." I agree to some extent that autism and the wider concept of the broader autism phenotype (BAP) do indeed root the behavioural presentation of autism as part of the tapestry known as humanity. As someone once said to me 'everything seen in autism is also seen at some stage of typical maturation -- it is the intensity and nature of the behaviour(s) and its effect on a person's life that merits diagnosis'. I'd perhaps also suggest that as other commentators have mentioned, one has to be a little careful not to overdo the whole natural diversity bit as a means to water down what autism can mean for a lot of people in terms of 'disability' and it's sometimes stark effects on quality of life.

Finally, and hopefully without upsetting anyone, I do have to take issue with a particular point raised in the Kenny paper: "Many adults were keen to emphasise other qualities of autism, counteracting commonly held beliefs that perpetuate in the media. They stressed that autism is a lifelong condition – that they do not ‘grow out of it’ when they become adults." 'Growing out' of autism is not necessarily the best way of describing the idea that some of the signs and symptoms of autism might change over time but it is a topic that has cropped up on this blog before (see here) under the guise of 'optimal outcome'. As per the findings reported by Helles and colleagues [2] there is an increasing realisation that for some on the autism spectrum, the behavioural presentation is not static and indeed might 'move' someone outside of the diagnostic confines of the label (see here for more explanation). The ways and means that this happens is still up for debate (learned strategies, intervention, maturation?) and even when this happens does not mean a symptom-free, problem-free life (see here); although even here I'm slightly guarded [3] in making too many sweeping generalisations.

Perpetuation of the ideas that (a) all autism is the same and (b) all autism is fixed and 'lifelong' however does little to forward the agenda of (neuro)diversity and the full meaning of the important sentence: 'if you've met one person with autism, you've met one person with autism'.

More than that though, they don't seem to be supported by the available peer-reviewed science...

Music: Nirvana - About A Girl.

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[1] Kenny L. et al. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2015. July 1.

[2] Helles A. et al. Asperger syndrome in males over two decades: stability and predictors of diagnosis. Journal of Child Psychology and Psychiatry. 2014. 3 October.

[3] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disorder. 2015. July 9.

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ResearchBlogging.org Kenny L, Hattersley C, Molins B, Buckley C, Povey C, & Pellicano E (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism : the international journal of research and practice PMID: 26134030