Long-term outcome and autism continued

"The long-term outcome of almost half of all individuals with autistic disorders is poor."

I know that opening sentence doesn't make great reading, but when reported as part of the "systematic review and meta-analysis of studies reporting on the overall outcome in terms of a global measure of adjustment in children with autistic disorders followed up in adolescence and adulthood" by Steinhausen and colleagues [1], there are potential lessons to be learned. That some 20% of those participants included in the various studies by Steinhausen et al were said to have a "good outcome" offers a template for further investigation as to how science and practice might increase such an outcome status among the wider autism spectrum.

Outcome is a bit of a fuzzy term but is something that has been discussed before on this blog (see here). In that instance as in this, the idea that there is (a) "strong evidence for heterogeneity" when it comes to long-term outcome in autism and (b) "little is known about the pathways and predictors" of outcome, are important points. I might also add that overall outcome as gauged by factors such as living arrangements, degree of independence and/or education/employment status does not automatically mean that a person leads a 'happy' or 'unhappy' life. Even those who gain employment for example, might not necessarily have a great quality of life (see here). Likewise a dependency on others for day-to-day support is to expected for some people on the autism spectrum, particularly for those where routine tasks cannot be accomplished alone or where core and/or comorbid issues can be sometimes utterly disabling [2]. This does not mean a person is necessarily unhappy. I'm adverse to the idea that there is one-size-fits-all instruction manual for 'good' long-term outcome for everyone on the autism spectrum just as there isn't for those not on the autism spectrum.

With all that in mind, the area of outcome and autism and specifically the idea that we know little about the 'pathways and predictors' of it is perhaps a slight misnomer. If we happen to look at that group of people who have been headed under the label of 'optimal outcome' we can see important signals emerging (see here) including the idea that early communicative behaviours and general cognitive ability might be important behavioural variables for later outcome with autism in mind. I say this in the context of newer research also [3]. The suggestion that such cases of optimal outcome might have implications for psychiatric comorbidity outside of the presentation of core autism (see here) will no doubt also impact on perceptions/experiences of long-term outcome.

Although I don't want to get too bogged down in this area, I'd like to think that there are a few, quite simple, accommodations that could be made to improve overall long-term outcome for people on the autism spectrum. From a clinical perspective, some of the first things I'd like to see are moves to addressing the numerous health inequalities that seem to be popping up quite frequently with autism in mind and some rather distressing news on the extreme that is early mortality for example (see here and see here). Preferential screening for potentially 'over-represented' comorbidity might be a good start (see here and see here) and importantly, treating/managing what can be treated as and when it is identified (see here). The days of saying that every ailment experienced by a person on the autism spectrum is 'just down to their autism' are passing by very, very quickly.

Enabling individuals on the autism spectrum to further participate in society is perhaps another route towards better long-term outcome. I've talked before about research suggesting that greater societal inclusion is quite a big desire for quite a few people on the autism spectrum (see here) and what it might mean to them in terms of outcome. Of course this includes aspects such as getting a job (and not necessarily a job in the technology industry! [4]) and participating in activities such as sports or hobbies relevant to a person. More than that however are the opportunities to make and have friends and perhaps even meeting that special someone. If we've learned anything generally about favourable long-term outcome, it is that social and familial support are also paramount.

I'd finally like to add in the findings reported by Gotham and colleagues [5] and the notion that "understanding and acceptance of adults with ASD [autism spectrum disorder]" might also be something pretty important to outcome. As per the suggestion from Gotham on "calls for survey and qualitative research to ascertain what “understanding and acceptance” mean to individuals with ASD and their families" I do think more needs to be known about what expectations and requirements are included under such fuzzy terminology. In these days when autism awareness has its own day many people will know something about autism even if it is just sweeping generalisations (see here). Of course more needs to be done to inform the masses about how 'if you've met one person with autism, you've met one person with autism' and the like, but over and above that issue is a question to put out there: what more can be done to improve elements related to long-term outcome in autism?

And (once again) as if to prove a point...

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[1] Steinhausen HC. et al. A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatr Scand. 2016 Jan 13.

[2] Posserud M. et al. Autism traits: The importance of “co-morbid” problems for impairment and contact with services. Data from the Bergen Child Study. Research in Developmental Disabilities. 2016. Jan 27.

[3] Eigsti IM. et al. Language comprehension and brain function in individuals with an optimal outcome from autism. Neuroimage Clin. 2015 Dec 2;10:182-91.

[4] Lorenz T. & Heinitz K. Aspergers – Different, Not Less: Occupational Strengths and Job Interests of Individuals with Asperger’s Syndrome. Dichter GS, ed. PLoS ONE. 2014;9(6):e100358.

[5] Gotham K. et al. Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism. 2015 Oct;19(7):794-804.

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Steinhausen HC, Mohr Jensen C, & Lauritsen MB (2016). A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta psychiatrica Scandinavica PMID: 26763353