Thursday, 31 October 2013

Autism and optimal outcome: the continuing saga

I think it's fair to say that the paper published by Deborah Fein and colleagues* (discussed in this post and this post) was a bit of a game-changer when it comes to how we view the autism spectrum conditions.

Describing a group of children originally diagnosed as being on the autism spectrum and then "losing all symptoms of ASD in addition to the diagnosis, and functioning within the nonautistic range of social interaction and communication", there was plenty of comment on this optimal outcome study at publication. Some commentators at the time seemed to go out of their way to try and shred this bit of science and reinforce the "autism is always lifelong" line. Even now an expression of doubt remains of any notion of 'autism recovery'. Note my use of the singular - autism - when it comes to describing the condition in those previous sentences.
Is it draughty in here? @ Wikipedia 

In some respects, I can see why the Fein paper was treated the way it was in some quarters. With all the due respects to our thriving media, to say that autism (or at least the diagnosis and diagnostic elements making up the diagnosis) might not in some cases be as set in stone as we all might have first thought, carries a significant risk that autism - all autism - might be just viewed as some passing developmental phase. It's not by the way.

It all boils down to generalisation and, as we've witnessed in recent weeks when it comes to the depiction of mental health (see this headline), how generalisation can often be so very damaging.

To reiterate from the original Fein paper and quote from the accompanying journal editorial** "They conclude, rather modestly, that these results ‘‘substantiate the possibility of optimal outcome,’’ demonstrating that some children with a clear early history and accurate diagnosis of ASD do indeed move into the entirely normal range of social and communication development later in childhood." I've underlined the word 'some' to stress that they weren't generalising to everyone with autism. Some.

After that very long-winded introduction, I'm talking today about some of the follow-up work that has been published on these optimal outcomers in relation to their wider presentation including academic ability. The paper by Troyb and colleagues*** adds to the interest in this group suggesting that when it came to "measures of decoding, reading comprehension, mathematical problem solving, and written expression" the optimal outcomers were more similar to 'typically developing' peers than those with a diagnosis of autism which puts them under the 'high-functioning' description of presentation.

The paper by Eigsti & Fein**** likewise reported that when it came to pitch discrimination (see here for more details) "Unlike an ASD group, which shows heightened pitch discrimination, the Optimal Outcome group's abilities do not differ from those of typically developing controls". This based on the suggestion that pitch sensitivity might be enhanced among (some of) those with high-functioning autism*****.

If one were to base the judgement of optimal outcome on these studies alone, you may very well get the impression that autism was just a passing phase for these children, and seemingly left little or no mark on their subsequent development and performance skills.

But things are never so straight forward. And to think that autism - defined as a disorder of early development - with its heightened risk of a range of other comorbidities, even if now removed from the developmental equation would not have some bearing on future development is perhaps a little too narrow a view to take.

Take for example another paper by Troyb and colleagues***** looking at executive functioning (EF) in those optimal outcomers. Another rather long quote I'm afraid: "Despite their average performance, however, the OO [optimal outcome] and TD [typically developing] groups differed on measures of impulsivity, set-shifting, problem-solving, working memory, and planning, suggesting that the OO group does not have the above-average EF scores of the TD group despite their high-average IQs". In other words, allowing for the still quite small numbers of participants in these studies and their cognitive functions, issues seem to remain, at least in childhood.

If I were to get even more 'psychological' with this topic, I might also show you the paper from Naigles and colleagues****** whose title - 'Residual difficulties with categorical induction in children with a history of autism' - sums up my argument that the more visible aspects of autism might indeed have vanished into the diagnostic ether, but that does not mean that typical developmental service has just resumed. Likewise based on the data from the paper by Kelley and colleagues******* on residual language issues (in areas of pragmatic and semantic language comprehension) and that from Tyson and colleagues******** on language and verbal memory in optimal outcomers.

I'm not trying to reverse my original assertion that the Fein paper was a game-changer based on these evidence. I still see the work of Fein and colleagues as being potentially, some of the most important work ever done on autism; big words I know. I still also see those optimal outcomers as carrying some of the most important data about autism. And harking back to my highlighting the singular term 'autism', how the optimal outcomers are some of the strongest evidence yet for the concept of 'the autisms' which I seemingly keep going on about in every post.

But alongside, there is the realisation that autism is potentially much more than just the triad (or dyad) of symptoms that we've diagnostically boiled it down to. Optimal outcome? The mum in this newspaper article talks about "shadows left behind from his autism". I was also, for example, going to do a separate post based on the paper by Leonard and colleagues********* in relation to motor development and autism. Something along the lines of how even Kanner in his original writings about autism, hinted that autism might be so much more than just a triad of symptoms. But since I'm here already with this rather long blog post, let's just say autism, sorry the autisms, might be so much more than what we currently call it.

I'm going to close this post with a few things I'd still like to see from the optimal outcome data. The obvious question is: who are the optimal outcomers and indeed, what makes them different from other children on the autism spectrum? I'm not necessarily just talking about overt clinical presentation or scores on some psychometric tool but rather biologically, genetically, epi-genetically, microbiomic-ally(?) who are they and what makes them optimal outcomers?

I'd like to know more about the ways and means they went towards their path of optimal outcome. Are we talking about some spontaneous arrest of autistic traits similar to what might be expected in an infection-based model of presentation or something rather more gradual? Are we talking about the effects of early behavioural intervention, pharmacotherapeutic intervention and/or all those myriad of so-called complementary 'biomedical' interventions?

Perhaps more in the long-term, I'd like to know how does optimal outcome translate into the 'real world' when it comes to transitioning from child to adult. Does it mean a better shot at good educational achievement, a decent job, a living wage, independent living, the option of a family, a healthy life relatively free of medication or ill-health? And what happens to the various comorbidities?

Questions still remain about optimal outcome in relation to autism. But I'm not taking anything away from the pretty comprehensive picture that is already being drawn about optimal outcome occurring in cases of autism.

----------

* Fein D. et al. Optimal outcome in individuals with a history of autism. J Child Psychol Psychiatry. 2013 Feb;54(2):195-205.

** Ozonoff S. Editorial: Recovery from autism spectrum disorder (ASD) and the science of hope. J Child Psychol Psychiatry. 2013 Feb;54(2):113-114.

*** Troyb E. et al. Academic abilities in children and adolescents with a history of autism spectrum disorders who have achieved optimal outcomes. Autism. 2013 Oct 4.

**** Eigsti IM. & Fein DA. More Is Less: Pitch Discrimination and Language Delays in Children with Optimal Outcomes from Autism. Autism Res. 2013 Aug 8. doi: 10.1002/aur.1324.

***** Troyb E. et al. Executive functioning in individuals with a history of ASDs who have achieved optimal outcomes. Child Neuropsychol. 2013 Jun 3.

****** Naigles LR. et al. Residual difficulties with categorical induction in children with a history of autism. J Autism Dev Disord. 2013 Sep;43(9):2048-61.

******* Kelley E. et al. Residual language deficits in optimal outcome children with a history of autism. J Autism Dev Disord. 2006 Aug;36(6):807-28.

******** Tyson K. et al. Language and Verbal Memory in Individuals with a History of Autism Spectrum Disorders Who Have Achieved Optimal Outcomes. J Autism Dev Disord. 2013 Aug 28.

********* Leonard HC. et al. Motor development in children at risk of autism: A follow-up study of infant siblings. Autism. 2013 Oct 7.

----------

ResearchBlogging.org Troyb E, Rosenthal M, Eigsti IM, Kelley E, Tyson K, Orinstein A, Barton M, & Fein D (2013). Executive functioning in individuals with a history of ASDs who have achieved optimal outcomes. Child neuropsychology : a journal on normal and abnormal development in childhood and adolescence PMID: 23731181