"the importance of considering how autism acceptance could contribute to mental health in autism"

The quote heading this post comes from the findings reported by Eilidh Cage and colleagues [1] (open-access) who sought to examine how "experiences and perceptions of autism acceptance could impact on the mental health of autistic adults."

Using an on-line survey "to test the relationship between perceived autism acceptance and mental health (specifically, depression, anxiety and stress)" findings are reported based on responses from over 110 people diagnosed as on the autism spectrum. I say 'diagnosed as on the autism spectrum' but as with any internet survey, there is always a degree of 'trust' that autism diagnoses are being reported faithfully just as it is with other labels that were under study: "a high proportion of participants reported additional diagnoses." Indeed, I also note that "11 participants reported that they did not currently have a formal diagnosis of autism" and were still included in some of the analyses...

No mind, the authors sought to 'quantify' autism acceptance given no measure currently exists by asking various questions including "whether they felt that society (specified as the general public, made up of people who did not personally know them) generally accepted them, with “yes”, “no”, “sometimes” and “prefer not to say” as response options." Responses were also sought to statements such as "over the past week, I have felt accepted by society as an autistic person/person with autism" and onward "perceptions of autism acceptance from different sources." This was complemented by responses to the Depression, Anxiety and Stress Scale (DASS-21).

Results: "depression was predicted by autism acceptance from external sources (society, family and friends) and personal acceptance" but anxiety was not seemingly *linked* to autism acceptance. Drilling down further into their results, researchers observed that "greater personal autism acceptance predicted lower depressive symptoms" indicating that variables such as self-esteem might mediate any risk of presenting with depressive signs and symptoms [2] (see here for my take). This is something that perhaps tallies with other research talking about autistic traits and wellbeing [3].

The author has also written a piece for The Conversation on her research study (see here).

I'm not quite sure why the ever-fluffy psychological concept of 'Theory of Mind' (ToM) needed to be introduced into the Cage paper given that no measure of ToM was actually included in the study. A quick search of other published research from these authors reveals that ToM is a feature there too [4]. The authors talk about how "Theory of Mind ability may impact on perceptions of autism acceptance" but I'm not so sure that this is particularly important. It's kinda like suggesting that society is completely autism aware and accepting/accommodating but those on the spectrum 'don't seem to understand it' as a result of any ToM issues, which is of course, a nonsense. ToM also still requires a bit more investigation into what it actually means and covers (see here) including the idea that issues with ToM might themselves be 'impaired' as a result of something like depression (see here). I'd also point out that quite a few other over-represented diagnoses potentially appearing alongside autism also seem to present with ToM issues [5] too...

"There is still a long way to go in understanding and tackling the high prevalence of mental health difficulties in autism, but we believe that the social model approach is a useful and positive lens through which mental health outcomes could be improved." That was the conclusion reached by authors on the basis of their findings. I would agree that there is still a long way to go on the topic of mental health and autism and the social model approach - "disability is caused by the way society is organised, rather than by a person’s impairment or difference" - is an option for further research of this kind. But I would also caution that one needs to balance such a perspective with others too (see here), and accept that the organisation of society is not always the most disabling aspect of a person's disability, particularly when it comes to something like depressive symptoms. Indeed, to say that depressive symptoms accompanying autism might merely be a facet of a 'lack of acceptance' or a lack of understanding from society or the individual themselves, risks plunging autism back into some pretty dark times (see here) and is likely to conflict with various other views. From a clinical point of view, it ignores some very serious research on the wide spectrum that is depression potentially present for all-manner of different reasons, being relevant to the equally wide spectrum that is autism (see here for a discussion on how depression might actually be something rather more fundamental to some autism over just being 'comorbidity'). At worst, it may even delay or put people off from seeking timely recognised treatments when depression becomes 'clinical', which could be a rather dangerous path to start down (see here).

Having said all that, I don't however think too many people would argue with the idea that personal perception(s) whether positive or negative are likely to impact on a person's mental (and physical?) health and wellbeing. If one is constantly feeling like an 'outsider' or excluded or feels that ones needs are not being met, added to a possible history of being bullied or loneliness or indeed, with other clinical labels also potentially being present for example, one is likely to build up a mindset appropriate to such a situation which probably includes some advanced risk for depressive signs and symptoms. From that point of view, much more needs to be done to look at the ways and means of impacting those personal perceptions; possibly taking into account other relevant research which has some [evidence-based] suggestions on things like societal inclusion and increasing access to it (see here) for those who want this option, alongside other complementary strategies where some [peer-reviewed] evidence is present (see here) and continues to be produced (Google the 'HUNT Cohort Study' to see what I mean). I say all this reiterating that something like chronic loneliness can very much be a major contributor to issues like depression.

I also understand the calls to make society more autism-accepting which I think most people would support as being pertinent across the ENTIRE autism spectrum (see here). I'm however, a little unsure of the real-life plan and details of the plan attempting to achieve this goal; particularly in the current climate when even getting a timely diagnosis seems to be an uphill struggle and when also many on the autism spectrum are seemingly left to fend for themselves post-diagnosis. Society it seems, is getting much more autism aware (for good or bad based on current media portrayals for example) but not necessarily getting more autism accommodating nor necessarily putting important words into actions. Indeed, one could argue that other societal factors like unemployment and financial hardship readily experience by those with autism are probably as, if not more, important to their experiences of something like depression yet little appears to be done to improve such issues for the vast majority...

As for the "experiences of “camouflaging” [that] could relate to higher rates of depression" also mentioned in the Cage article, I have quite a lot of time for this area of autism research (see here). Particularly the idea that camouflaging is not necessarily an all-female pursuit in the context of autism (see here) and how truly energy-sapping it can be for many, many people on the spectrum...

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

[2] 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.

[3] Rodgers JD. et al. Brief Report: Personality Mediates the Relationship between Autism Quotient and Well-Being: A Conceptual Replication using Self-Report. J Autism Dev Disord. 2017 Sep 16.

[4] Cage E. et al. Reputation management: evidence for ability but reduced propensity in autism. Autism Res. 2013 Oct;6(5):433-42.

[5] Wang Y-Y. et al. Theory of mind impairment and its clinical correlates in patients with schizophrenia, major depressive disorder and bipolar disorder. Schizophrenia Res. 2017. Nov 7.

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Post-traumatic stress disorder (PTSD) and autism (minus the psychobabble)

Quite a few years back, I talked about the idea that a diagnosis of autism or autism spectrum disorder (ASD) is seemingly not protective of other conditions/labels appearing alongside in the context of post-traumatic stress disorder (PTSD) (see here). Described as an 'anxiety disorder', PTSD is a complicated condition typically encompassing several key features: experiencing one or more traumatic events (natural disaster, victim of crime, experiencing various forms of abuse, etc) and subsequent re-experiencing of said events (flashbacks, nightmares, anxiety, etc) significantly impacting on day-to-day life.

The paper by Haruvi-Lamdan and colleagues [1] provides some further, welcomed, research interest in the relationship between PTSD and autism in the context that a "potentially unique perception of traumatic events, particularly from the social sphere" might predispose those diagnosed with autism to be more vulnerable to PTSD than other groups.

I've titled this post 'minus the psychobabble' because, unfortunately, there is still a body of thinking out there that tries to explain concepts like PTSD in terms of schools of thought such as the psychoanalytical for example. I don't want to get into the nitty-gritty of whether your 'ego balances the id' or whatnot (and how one would actually evidence such concepts), but I do want to keep autism away from psychoanalysis. I say all that in the context that Haruvi-Lamdan et al note: "While autism and trauma were often linked in psychoanalytic theory..." but go on to provide some slightly more evidence-based discussions.

Three important points are made by the authors as to how PTSD (and trauma in general) might be linked to autism.

"First, autism spectrum disorder (ASD) may serve as a vulnerability marker for posttraumatic stress disorder (PTSD), specifically by increasing the risk for exposure to traumatic events." Although not easy to say, a diagnosis of autism or the presence of clinically-relevant autistic traits does seemingly put someone at far greater risk for experiencing various traumatic events [2]. I speak of peer-reviewed research talking about being a victim of bullying in the context of autism (see here) for example; noting that bullying is not always 'just playground shenanigans'. I would also refer you to some other factors that don't make for great dinner-table conversation in the context of autism (see here). And if you think that such factors are typically present only in childhood, think again. This all on top of the more usual likelihood of experiencing trauma that we all face.

"Second, PTSD, once it has appeared, may exacerbate certain ASD symptoms, for example, through maladaptive coping strategies and reduced help-seeking." I'm not in total agreement with the idea of 'maladaptive coping strategies' in the context of autism because science/practice does not really know enough about coping strategies (and concepts such as resilience) either in general or in the specific context of autism. I don't doubt that individuals with and without autism might have their own way of 'coping' but there is no evidence of some 'one-size-fits-all' across the entire diagnosis or population. I do agree that there may be aspects of autism that can lead to 'reduced help-seeking' as per the issue of communication and/or language use for example, and also the strength of social circles, but that's about as far as we can reliably say at this point.

"Third, there may be shared underlying mechanisms for PTSD and ASD, including neurological abnormalities associated with both disorders, as well as cognitive and behavioral mechanisms, such as increased rumination, cognitive rigidity, avoidance, anger, and aggression." Again there are some quite sweeping generalisations included in the authors writings here - 'neurological abnormalities'? - but they do raise some important points. Rumination - a deep or considered thought about something - coupled to perseveration is something that I've covered before in the context of autism (see here). It boils down to a potential heightened risk of 'not letting go' of a topic and how, in the context of trauma and PTSD, this could be something over-represented in the context of autism or the presence of autistic traits. Added to other issues such as an intolerance of uncertainty (see here) and you can perhaps see how autism and PTSD might not necessarily be miles apart. I probably didn't need to say it but will anyway, anxiety in the context of autism seems to be both rife and in many cases, is absolutely disabling (see here).

Although there may be several inter-connecting variables that potentially unite autism and PTSD, I don't want to lose sight of the heterogeneity that is present alongside both labels. Even in the context of experiencing some truly awful acts, there are disparities in whether PTSD is diagnosed in the context of autism [3] similar to the not-autism population. Diagnosis of autism and/or clinically relevant autistic features are likely to be only part of the picture here. That being said, there does seem to be grounds for quite a bit more investigation in this area, and onward, whether screening for PTSD in the context of autism should be more widespread and also examination of how effective the intervention(s) currently in place for PTSD are in the context of autism + PTSD...

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[1] Haruvi-Lamdan N. et al. PTSD and Autism Spectrum Disorder: Co-morbidity, Gaps in Research, and Potential Shared Mechanisms. Psychol Trauma. 2017 Jul 20.

[2] Roberts AL. et al. Association of autistic traits in adulthood with childhood abuse, interpersonal victimization, and posttraumatic stress. Child Abuse Negl. 2015 Jul;45:135-42.

[3] Brenner J. et al. Behavioral Symptoms of Reported Abuse in Children and Adolescents with Autism Spectrum Disorder in Inpatient Settings. J Autism Dev Disord. 2017 Jun 7.

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Levels of paranoia are higher in autism: systematic review

Paranoia, defined as the unfounded or exaggerated idea that something or someone is deliberately trying to psychologically, physically or financially harm you, is not an uncommon transient sentiment among the general population at one time or another. On a more pathological level, paranoid schizophrenia perhaps represents the archetypal label where paranoia assumes an altogether more persistent and 'life-changing' effect; also potentially escalating into more extreme behaviour/s.

The idea that levels of paranoia might also be elevated as and when a diagnosis of autism spectrum disorder (ASD) is received is discussed in a recent review paper by Debbie Spain and colleagues [1]. Looking at the available peer-reviewed literature on the topic, researchers reported that those with ASD "were consistently found to have higher levels of paranoia compared to non-clinical controls, and lower levels than individuals with current psychotic experiences manifesting in the context of schizophrenia." They further speculated that: "core ASD characteristics and associated neurocognitive impairments also serve to precipitate and perpetuate paranoia."

Accepting that cultural views of paranoia or paranoid behaviour are not generally all that 'positive' and how this may have potentially the same impact on autism as it has had on the perception of schizophrenia, the Spain paper is an important addition to the research literature. I say this not solely because of how issues such as perseveration and rumination potentially linked to the perpetuation of paranoia are not uncommon in cases of autism [2] but also because of the still evolving story around how autism and schizophrenia might, on occasion [3], overlap (see here). The idea that social anxiety and depression might be something else important to the clinical regions of paranoid thought [4] also ties in with evidence on the over-representation of these labels/behaviours alongside some autism (see here).

Appropriate clinical screening is, once more, implied as and when any suspicions about the presence of chronic paranoid thinking occur when autism is diagnosed; not least because of the potential for progression into the clinical realms of schizophrenia (with caveats) and related labels. That paranoia combined with ruminative thinking and/or worry [5] for example, can in some circumstances be absolutely disabling for a person is also a good reason why intervention should be very, very seriously considered...

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[1] Spain D. et al. Conceptualising paranoia in ASD: A systematic review and development of a theoretical framework. Research in Autism Spectrum Disorders. 2016; 25: 97-111.

[2] Pugliese CE. et al. The role of anger rumination and autism spectrum disorder-linked perseveration in the experience of aggression in the general population. Autism. 2015 Aug;19(6):704-12.

[3] Woodbury-Smith MR. et al. Autism spectrum disorders, schizophrenia and diagnostic confusion. Journal of Psychiatry & Neuroscience : JPN. 2010;35(5):360.

[4] Carroll A. Are you looking at me? Understanding and managing paranoid personality disorder. Advances in Psychiatric Treatment. 2009; 15: 40-48.

[5] Startup H. et al. Worry processes in patients with persecutory delusions. Br J Clin Psychol. 2016 Mar 20.

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Spain, D., Sin, J., & Freeman, D. (2016). Conceptualising paranoia in ASD: A systematic review and development of a theoretical framework Research in Autism Spectrum Disorders, 25, 97-111 DOI: 10.1016/j.rasd.2016.02.002