"sleep and social satisfaction could be monitored to increase QoL in autistic adults"

The quote titling this brief post - "sleep and social satisfaction could be monitored to increase QoL [quality of life] in autistic adults" - comes from the findings published by Marie Deserno and colleagues [1].

Their examination of nearly 600 adults with autism (or autistic adults if you prefer) turned up quite a few important details. Not least that "sleep problems are an important predictor of later subjective QoL [quality of life]" and "may offer an important treatment target for improving QoL." I know such findings aren't exactly unexpected (see here and see here) but they do reiterate that sleep is something pretty important to mental and physical health and well being for everyone.

The additional finding on 'social satisfaction' also potentially playing a role in subjective quality of life reports in relation to autism is also not exactly novel (see here). It reiterates that participating in society, as described by other authors (see here), should be a fundamental right for all who want it.

I hasten to add that sleep and social satisfaction are not the only things that influence quality of life in the context of autism (see here) or anything else. On the basis that 'if you've met one person with autism, you've met one autistic person' if you want to know what might help a person, why not ask them.

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[1] Deserno MK. et al. Sleep determines quality of life in autistic adults: A longitudinal study. Autism Res. 2019 Apr 10.

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Loneliness --> low self-esteem ---> depression?

It was the findings reported by James McCauley and colleagues [1] that prompted today's post. Working on the basis that "there have been few comprehensive investigations of self-esteem in children and adolescents with autism spectrum disorder (ASD)" researchers set out "to assess how youth with ASD rate their self-esteem compared to age-matched TYP [typically developing] youth." Further, how levels of self-esteem (or not) might onward influence "internalizing psychopathology", the fancy phrase for issues such as depression and anxiety.

I don't typically go for grand theories and sweeping generalisations on this blog, particularly when referencing the very large and very diverse autism spectrum. I've not moved over to the 'dark side' of generalisation in this post but am particularly interested in the some of the *associations* talked about my McCauley et al.

Specifically how: "youth with ASD rated their self-esteem significantly lower than did TYP youth" and how self-esteem was "strongly related to depression." Add in the findings reported by Micah Mazurek [2] who observed that "loneliness was associated with increased depression and anxiety and decreased life satisfaction and self-esteem" and some potentially important processes emerge as per the equation titling this post: Loneliness --> low self-esteem ---> depression?

McCauley and colleagues do also talk about how Theory of Mind (ToM) also showed some possible *associations* to elements of their results but I'm not really minded to go into this part of their findings with any great detail. It's not that I don't believe that ToM might not be an issue for some on the autism spectrum, but rather as other results have suggested [3], questions still remain about what ToM actually means and whether other issues (i.e. alexithymia) might predominate in relation to some autism [4] (where the stress is on 'some').

I don't doubt that there are several other important elements potentially influencing things like self-esteem in relation to autism and how it can lead to issues such as depression (see here). Further studies are needed on this topic, including drawing on the autism-not-specifically-mentioned research literature [5]. But insofar as the simplistic relationship set out in the post, there is an obvious area ripe for intervention: loneliness. And on that point, there are options available (see here) if and when desired; accepting that not everyone wants (or needs) lots of people around them all of the time. This perhaps is also where the online world (in moderation) can also come into it's own [6] (I repeat 'in moderation').

Finally, I'll be coming to the findings reported by Cage and colleagues [7] in the not-too-distant-future talking about how "personal acceptance significantly predicted depression" in the context of autism and what role self-esteem might play here too (minus too much psychological fluff and ToM chatter)...

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[1] McCauley JB. et al. Self-Esteem, Internalizing Symptoms, and Theory of Mind in Youth With Autism Spectrum Disorder. J Clin Child Adolesc Psychol. 2017 Oct 19:1-12.

[2] Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism. 2014 Apr;18(3):223-32.

[3] Oakley BF. et al. Theory of mind is not theory of emotion: A cautionary note on the Reading the Mind in the Eyes Test. J Abnorm Psychol. 2016 Aug;125(6):818-23.

[4] Trevisan DA. et al. Alexithymia, but not autism spectrum disorder, may be related to the production of emotional facial expressions. Mol Autism. 2016 Nov 11;7:46.

[5] Sowislo JF. & Orth U. Does low self-esteem predict depression and anxiety? A meta-analysis of longitudinal studies. Psychol Bull. 2013 Jan;139(1):213-240.

[6] Sundberg M. Online gaming, loneliness and friendships among adolescents and adults with ASD. Computers in Human Behavior. 2017. Nov 1.

[7] Cage E. et al. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2017 Oct 25.

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On housing and autism

The commentary published by David Mandell [1] provides some food for thought today pertinent to the on-going debate about "how and where to house adults with autism."

I've kinda touched upon this complicated subject in past blog posts (see here) but wouldn't dare think that any quick and easy solutions are going to be forthcoming on this important topic.

Housing for those on the autism spectrum (and beyond) has a patchy history across the globe. From the dark days of mass institutionalisation of those with psychiatric and developmental disabilities to moves towards 'care in the community', one can almost chart how society's views and attitudes to some of its most vulnerable people have seemingly advanced in a relatively short space of time. As Mandell points out: "institutions and the practices that occur within them were hidden from public view, which led to little accountability and serious abuses" reflecting how moves towards "greater observability and accountability" have probably been a primary driver in the switch in housing options.

But all has not been plain sailing in this transition. Many people here in Blighty remember those harrowing scenes filmed in places such as Winterbourne View, a place meant to be 'home' for many people, and with it, meant to provide all the trappings of home such as happiness, comfort and dignity; all sadly lacking in that case. There have, as Mandell also acknowledges, also been serious misgivings about how community services serve all those on the autism spectrum particularly when "caring for individuals with more profound impairments." A recent and relevant example of this can be read here. Balancing civil rights such as "inclusion and community participation" with basic needs such as actually finding suitable housing arrangements is a task still faced by far too many.

As I've said, there are no quick and easy solutions to ensuring that housing services meet everyone's needs. I do like the ideas that Mandell discusses in terms of a change of focus when it comes to housing arrangements in the context of autism, where "happiness and life satisfaction" and care quality are key over and above generic requirements such as inclusion and community participation. By saying that I'm not suggesting that inclusion and community participation aren't and shouldn't be important (see here for example) but rather that mandating them when it comes to residential options for those on the autism spectrum perhaps risks putting a 'one-size-fits-all' recommendation on what is supposed to be a personalised and tailored core issue. Living in the countryside or remote areas as quite a few people in the general population also do - "segregated farming communities" - should not for example, be viewed as 'a worse option' if and when someone is happy in such a setting and experiences a good quality of life. Even worse, that by housing people in "poor neighborhoods with few opportunities for community engagement" purely on the basis of concepts such as social inclusion, risks putting vulnerable adults in an even more vulnerable position (combining at a time when care resources and finances are already reaching breaking point).

And when it comes to residential placement for children when required [2] similar considerations also might apply... happiness, life satisfaction and good quality care and support. Simple.

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[1] Mandell DS. A house is not a home: The great residential divide in autism care. Autism. 2017 Oct;21(7):810-811.

[2] Benderix Y. et al. Parents' experience of having a child with autism and learning disabilities living in a group home: a case study. Autism. 2006 Nov;10(6):629-41.

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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

Societal inclusion and adult autism

"Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD [autism spectrum disorder]."

That was the primary finding reported by Lilly Schmidt and colleagues [1] following their report examining "psychosocial functioning and life satisfaction in adults with autism spectrum disorder" and importantly "identifying areas of functioning that are most predictive for life satisfaction in individuals with ASD."

Based on responses to the World Health Organization Disability Assessment Schedule 2.0 part of the ICF framework I believe (see here), researchers quizzed 43 adults diagnosed with autism "without intellectual impairment" and 44 asymptomatic controls.

"Individuals with ASD reported significant functional impairments and less life satisfaction compared with nonclinical individuals in many areas of life" is perhaps not an unexpected finding in light of what autism can mean to someone and its impact on various areas pertinent to quality of life (see here). That being said: "daily living skills (e.g., getting around, self-care, and household) were not different from nonclinical participants" indicating that certain functional aspects of this cohort at least were intact.

Then back to that headline sentence about societal inclusion and participation being not only an important issue but 'the' most important issue when predicting life satisfaction among participants (this cohort at least) with autism. It's perhaps a sad reflection of today's society that something as simple as enabling a person to become an active member of society is seemingly something that we fail at when it comes to the autism spectrum. I know that 'participating in society' is quite a fluffy term and can cover lots of areas such as employment and friendships through to concepts such as social responsibilities, but surely there must be ways and means that aspects of inclusion can be engineered into plans as and when someone is diagnosed on the autism spectrum?

Aside from big national initiatives to tackle social inclusion and participation, I'd like to think that local communities are perhaps at the coalface when it comes to this issue. Accepting that it might not be everyone's cup of tea, something like local sports and related pursuits could be a good starting point in terms of social participation and how such leisure activities might also reduce some of the health inequalities that are becoming very apparent when autism is mentioned (see here). The paper by Müller and colleagues [2] mentioned this angle together with various other social supports - "external supports (e.g. activities based on shared interests, highly structured or scripted social activities, and small groups or dyads); communication supports (e.g. alternative modes of communication, explicit communication, and instruction in interpreting and using social cues); and self-initiated strategies for handling social anxiety (e.g. creative/improvisational outlets, physical activity, spiritual practice/organized religion, and time spent alone)" - that may also be worthy of consideration. Potential solutions are seemingly not hard to find.

Music: Kaiser Chiefs - I Predict A Riot.

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[1] Schmidt L. et al. Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment. J Clin Psychol. 2015 Sep 25.

[2] Müller E. et al. Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism. 2008 Mar;12(2):173-90.

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Schmidt L, Kirchner J, Strunz S, Broźus J, Ritter K, Roepke S, & Dziobek I (2015). Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment. Journal of clinical psychology PMID: 26406481