Wednesday, 16 January 2013

Some children lose their autism diagnosis

"Autism is a lifelong condition".

That's what I was always led to believe when I was a fresh-faced undergraduate student being taught developmental disorders 101. Indeed the recent autism myths and facts tweeted by the UK National Autistic Society (NAS) confirmed this fact; to quote: "#AutismMyth: A child with autism will grow out of the condition". Having said that I was also told that every person with autism also lacked a Theory of Mind (ToM) such was the research climate of the time.
Yucca @ Wikipedia  

With this in mind, I came across a recent piece which seems rather at odds with the conventional wisdom on the lifelong aspect based on the results of the study by Deborah Fein and colleagues (open-access)*. They reported that in a small, well-defined group where a diagnosis of autism was historically recorded and subsequently confirmed by case review, the symptoms of autism had all but abated. I think we might have heard murmurs of this study previously as per this article in the Telegraph from 2009.

Regular readers might remember that I've already touched upon this rather delicate area of research in a few previous posts on this blog: the bloomers post (here) and the 'can you grow out of autism' post (here).

That and some continued speculation on the relative (in)stability of an autism diagnosis (here) as a result of papers like this one from Kleinman and colleagues** which is only likely to become more of an issue with the arrival of the DSM-V and its detailing of a level of 'severity' of presented symptoms at time of assessment.

A few observations from the Fein study based on the paper abstract and the press release:

  • "Optimal outcome" participants (n=34) previously in receipt of a diagnosis on the autism spectrum were included for study alongside matched participants (age, sex) with high-functioning autism (n=44) and those asymptomatic for autism (n=34).
  • Early diagnostic reports for the optimal outcome group were reviewed, twice it seems (one time blinded) just to make sure that they did in fact present with autistic features. Groups were compared across various parameters looking at cognitive and more autism-specific behavioural traits.
  • Results: social issues were apparently slightly milder during early infancy in the optimal outcome group but on other important measures of the triad (sorry dyad) no real differences between them and the high-functioning autism group.
  • That and the fact that the optimal group showed, at the time of testing, no specific issues which might indicate an autism spectrum diagnosis in line with their regular schooling and no autism-specific statement of SEN (as we call it here in Blighty).

I should point out as per the quote from Tom Insel current director of the US National Institute for Mental Health (NIMH) on the press release, this study seems to be part of a wider initiative which should tell us a little more about why this group of children might have lost their autistic presentation and diagnosis.

As was perhaps expected, this study has generated quite a bit of press interest as per headlines like this one and this one. I'm sure everyone has their own opinion to account for these results stretching from intervention to infection to symptom profile - the rise of the autism(s) indeed. Even Prof. Fein has previously speculated on some possible reasons why*** and here**** too.

Whilst we await further results in this area I think it is worth reiterating a few important points: (a) this was a relatively small trial in terms of participant numbers, crying out for independent replication, (b) the authors are not suggesting that everyone 'grows' out of autism as if it is some kind of passing developmental phase, and (c) autism is not just the sum of its dyad (social affect + restricted interests/repetitive behaviours) in terms of the impact of peripheral symptoms (e.g. anxiety and stress reactions) and very importantly all that elevated risk of comorbidity.

But having said all that neither am I going to take away from the potential importance of this study and its focus on endophenotypes...

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Extra note (16/01/13). A quote from the paper: "The purpose of the current study was primarily to demonstrate the existence of a cohort who had clear autism at a young age and no longer demonstrated any significant autistic impairments. The data clearly support the existence of this group."

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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.

** Kleinman JM. et al. Diagnostic stability in very young children with autism spectrum disorders. J Autism Dev Disord. 2008; 38: 606-615.

*** Helt M. et al. Can children with autism recover? If so, how? Neuropsychol Rev. 2008; 18: 339-366.

**** Sutera S. et al. Predictors of optimal outcome in toddlers diagnosed with autism spectrum disorders. J Autism Dev Disord. 2007; 37: 98-107.

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ResearchBlogging.org Deborah Fein, Marianne Barton, Inge-Marie Eigsti, Elizabeth Kelley, Letitia Naigles, Robert T. Schultz, Michael Stevens, Molly Helt, Alyssa Orinstein, Michael Rosenthal, Eva Troyb, & Katherine Tyson (2013). Optimal outcome in individuals with a history of autism Journal of Child Psychology and Psychiatry : http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/abstract