Monday, 10 February 2014

Optimal outcome (and autism) by any other name

In my annual review of all things autism research covered on this blog, the accolade of paper of the year for 2013 went to [drum roll maestro]... that optimal outcome paper by Deborah Fein and colleagues* (see here and here for more information). Detailing the experiences of well-defined group of children previously diagnosed with an autism spectrum disorder (ASD) who no longer met the diagnostic criteria, the notions that (a) there may be differences in the developmental trajectories of children on the autism spectrum (a shocker, I know), and (b) at least one of those trajectories might include moving out of the autism spectrum, was nothing short of ground-breaking.
The daily ship jam @ Wikipedia 

Whilst discussions still continue about the Fein findings and indeed, whether for example, moving outside of the diagnostic domains of an autism diagnosis actually translates as a better shot at real-world issues such as gaining meaningful (and financially rewarding) employment or living an independent life relatively free of medication or ill-health, the notion of optimal outcomes really stoked the autism research fire. The paper by Deborah Anderson and colleagues** (including Cathy Lord on the authorship list) treads in similar footsteps with their suggestion that: "some cognitively able children with ASD who participate in early intervention have very positive outcomes". The paper capitalising on the question of what variables and factors might influence positive outcomes and indeed, optimal outcome. I will also direct you to some views on this paper over at the SFARI blog too.

As I do so many times on this blog, I have to thank Natasa from providing the full-text version of the Anderson paper for discussion here. Reading through the Anderson paper, I dare say we might have a contender for the paper of the year 2014 as per their study which spanned 17 years, prospectively following a group of children diagnosed with autism. Just before I go on I should point out that I think we've already seen earlier data from the Anderson group on this cohort as per this 2007 publication*** and this 2009 publication**** (see here for open-access).

A few details from their latest:

  • From a starting sample number of some 213 children initially referred for "possible autism" or with "non-ASD developmental delays" all under 37 months of age, 142 now young adults were in contact with researchers at 19 years of age including 85 youths who were diagnosed with ASD in early childhood.
  • An important quote: "A battery of diagnostic and psychometric instruments was administered in person when children were 2, 3, 5... 9 and 19 years, free of charge". This battery included the ADI-R, the ADOS (PL-ADOS), the Mullen Scales of Early Learning (MSEL), VABS and quite a bit more. That and the fact that logs were kept noting things like medication and "educational and intervention treatments" among participants.
  • Based on the division of participants diagnosed with autism into two groups as a function of (verbal) IQ at aged 19 (a) IQ less than 70 denoting 'Cognitively less able' (n=53) and (b) IQ equal or more than 70 ('Cognitively able' n=32), the authors reported that: "Intellectual disability at 19 was accurately predicted by age 2 about 85% of the time from IQ scores alone". Further that: "lower cognitive and adaptive abilities, along with more ASD-related symptoms at 2, predict membership in the VIQ <70 group [the 'Cognitively less able' group] 17 years later". That cognitive abilities may be predictive of future outcome is something which was also touched upon in the review paper by Magiati and colleagues*****.
  • When it came to those members of the 'Cognitively able' group', well: "Of the 32 VIQ ≥70 youths, eight no longer retained a clinical diagnosis of ASD at age 19". These 'optimal outcomers' were described as a 'Very Positive Outcome' (VPO) group. Indeed, it also seems that alongside 'losing' their diagnosis of autism, this VPO group also seemed not to be affected by issues such as depression: "Twenty-nine percent (n=7) of the VIQ ≥70-ASD youths had scores suggesting possible depression while none of the VPO youths had elevated scores" and also did not present with clinically elevated scores in areas of irritability or hyperactivity neither.
  • Perhaps more importantly than just scores and test results, the authors note that: "There was a strong trend toward higher rates of employment among VPO youths" added to their increased rates of independent living (away from the family home). Oh and no reports of having to take psychotropic medications. That being said the authors note that even when VPO was not 'achieved' at least some of the 'Cognitively able' group were: "doing very well in several areas" with many being "quite independent within their social contexts".

There is the promise of more data to come from this group insofar as the "stability of very positive outcomes", which with all the talk about diagnostic stability (see here) is an interesting prospect. What we can take from the current data from Anderson is that similar to the Fein results and other recent results, there may be multiple trajectories in autism when looked at longitudinally, and for some at least, a diagnosis of autism is not necessarily a lifelong event. I keep going on about it, but surely this must be another string to the bow for the concept of the autisms?

What else would I like to see from the Anderson data in publications to come? Well, maybe a few more details about the types of interventions that were reported over the course of children growing up might be a good place to start over above just "early treatment.. defined as at least 20 hr (once per week parent-training for 6 months)" in relation to the VPO group. At least then we'd be able to gauge what their relative contribution might or might not have been to youth outcome. Oh and I'm not just talking about educational and behavioural intervention either (see the recent paper by RogerAkins and colleagues***** which was covered in a recent post). I'd also like to know whether comorbidity played it's part in terms of outcome; y'know whether the onset of epilepsy or seizure disorder for example, affected later presentation.

These and lots of other questions which I'm hoping we'll see answered (or at least discussed) in future papers from this group. Watch this space...

I'll leave you with some Bob Marley and Stir it up.

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

** Anderson DK. et al. Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. J Child Psychol Psychiatry. 2013 Dec 9. doi: 10.1111/jcpp.12178.

*** Anderson DK. et al. Patterns of growth in verbal abilities among children with autism spectrum disorder. J Consult Clin Psychol. 2007 Aug;75(4):594-604.

**** Anderson DK. et al. Patterns of growth in adaptive social abilities among children with autism spectrum disorders. J Abnorm Child Psychol. 2009 Oct;37(7):1019-34.

***** Magiati I. et al. Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psych Rev. 2014; 34: 73-86.

****** Akins RS. et al. Utilization Patterns of Conventional and Complementary/Alternative Treatments in Children with Autism Spectrum Disorders and Developmental Disabilities in a Population-Based Study. J Dev Behav Ped. 2014; 35: 1-10.

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ResearchBlogging.org Anderson DK, Liang JW, & Lord C (2013). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of child psychology and psychiatry, and allied disciplines PMID: 24313878