Barriers to recruitment in paediatric CFS research: "the focus of the study itself"

I want to mention the study results published by Maria Loades and colleagues [1] today. This piece of research focused on the issue of participant recruitment "in the context of an observational study of mental health problems in adolescents with paediatric Chronic Fatigue Syndrome (CFS/ME) presenting to a specialist paediatric CFS team" and the barriers faced when trying to recruit for such a study. Various obstacles to participation were noted, including an important variable: "the focus of the study itself."

The Loades article is open-access so doesn't need any long post from me. The main points: researchers asked researchers about their research experience specifically focused on "exploring healthcare professionals’ views of recruiting to studies, including the facilitators and barriers to recruitment to this study." 'This study', by the way was an "observational study of co-morbid mental health problems in adolescents with confirmed CFS/ME."

Results: based on interviews with six researchers, various qualitative results were provided. Some interesting points were raised. The ones that stood out for me were related to how researchers themselves talked about the research focus on mental health in relation to ME/CFS. A few choice quotes exemplify this: "…because it’s got depression in the title and um I think um you it just seems a little bit more explanation um by inviting them to take part I’m not suggesting that they are depressed…" and "because it is more objectively more obviously about the mental health side of things I have found it to be a different experience recruiting to this."

I'm sure that for those with some knowledge about the debates on-going in the context of ME/CFS you can perhaps see where I'm going with this. I speak of course about the 'application' of things like the biospychosocial (BPS) model to ME/CFS which has, I'm afraid to say, caused some significant distress down the years to patients, their loved ones and many researchers alike (see here and see here). Indeed, one could argue that the application of the BPS model to ME/CFS, where 'unhelpful thoughts' for example are deemed part-and-parcel of some peoples view of ME/CFS, has been so damaging to the concept of ME/CFS, that any study looking at mental health in the realm of CFS/ME is likely to be seen as 'tainted' by association.

And, as I write, still the BPS beat continues [2] although with scrutiny continuing to follow [3]...

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[1] Loades ME. et al. Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study. BMC Med Res Methodol. 2019 Apr 27;19(1):89.

[2] Gregorowski A. et al. Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now? Curr Opin Pediatr. 2019 Apr 30.

[3] Vink M. & Vink-Niese A. Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review. Health Psychol Open. 2019;6(1):2055102919840614. 

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"Depression, dysthymia and symptoms of anxiety and post-traumatic stress are associated with extremist sympathies"

It's a particularly poignant time to be writing this post about the findings reported by Kamaldeep Bhui and colleagues [1] on the day that news broke about events in New Zealand (see here). An all-too-familiar story of hate leading to bloodshed helped along by access to weapons; communities are left scared, confused and broken following such acts of depravity.

Although snippets of information about the events leading to the New Zealand murders are still at the time of writing coming to light, the incident is being treated as a terrorist attack. News agencies have converged on the suspect; the life behind such crimes and any possible motives. Discussions will eventually lead to inevitable questions about what motivates someone to kill innocent people under such circumstances and on such a horrific scale, and could such an act have been foreseen and potentially avoided.

The Bhui findings hopefully represent a part of that inquiry as per their focus on trying to "better understand the drivers of radicalisation and extremist attitudes more generally, and the links with symptoms of psychological and mental illnesses." I say the Bhui findings might help, but also reiterate that at the time of writing, we don't know for example, whether 'psychological and mental illness' was part-and-parcel of the motivation for the New Zealand attacks.

The basics: a study based here in Blighty, researchers recruited over 600 adults (18-45 years of age) and asked various questions and for various bits of information. They asked for information about psychiatric variables such as depression (depressive symptoms), dysthymia "(i.e. persistent mild depression, or depressive personality)", personality disorder symptoms and symptoms related to post-traumatic stress disorder (PTSD). We're also told that: "Autism symptoms were measured by using a total score on the Autism Spectrum Quotient (AQ-10), which is reported as having high discriminant validity for those with and without a clinical diagnosis." I'll come back to that sentence shortly. Alongside, participants completed something called the "'SyfoR': Sympathies for Radicalisation" tool. As the name suggests, the instrument is used to gauge sympathies to "(a) committing minor crime, (b) committing violence… in political protests, (c) organising radical terrorist groups, (d) threatening to commit terrorist actions, (e) committing terrorist actions… as a form of political protest, (f) using bombs and (g) using suicide bombs to fight against injustices." Respondents are categorised as sympathisers, condemners or neutral. It appears that Bhui has played an integral part in developing the SyfoR tool.

Results: bearing in mind this was a study of extremist beliefs, not extremist actions, and mental health, researchers observed that: "SVPT [sympathies for violent protest and terrorism] were more common in those with major depression with dysthymia..., symptoms of anxiety... or post-traumatic stress." Perhaps just as important, we are told that: "Autism and personality disorder scores were not associated with SVPT" which kinda ties in with a judgement recently (see here). I say that bearing in mind that the AQ might be picking up quite a bit more than just a possible 'clinical diagnosis' of autism (see here) and reference to the growing research literature on how vulnerability is something to consider when autism is mentioned in several contexts (see here and see here). What else? Well, age played a factor (younger people were more likely to display SVPT) and SVPT was more commonly noted in those who drank, smoked and reported having a previous criminal conviction. Also of important note was the finding that: "SVPT were shown by 15.1% of the White British and 8.1% of the Pakistani groups" taking into account that half of participants were White British and half were of Pakistani heritage.

I don't want to get too carried away with sweeping generalisations stemming from the Bhui results but one can't help but wonder about the potential implications. As the authors opine: "in the absence of links with extremist groups or histories of extremist offending, the presence of mental illnesses may add risk" when it comes to SVPT. Onward: "A more general approach to improving population mental health alongside prevention in specific populations such as those experiencing post-traumatic symptoms and younger people may be helpful." I say all that being very careful not to stigmatise any individual or any group of people.

But there are concerns too. Concerns that for example, with the data suggesting that more and more young people are suffering with mental ill-health (see here) so this *might* potentially tie into some of the Bhui conclusions minus any sweeping generalisations...

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[1] Bhui K. et al. Extremism and common mental illness: cross-sectional community survey of White British and Pakistani men and women living in England. Br J Psychiatry. 2019 Mar 15:1-8.

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"less than half of participants mentioned autism in their identity descriptions"

One important point to make about the findings reported by Lily Cresswell & Eilidh Cage [1] is the participant number. It was small; including only 24 young people "recruited through mainstream secondary schools in London, UK" who were diagnosed with an autism spectrum disorder (ASD) and who were asked to participate in a study examining "the relationships between identity, acculturation and mental health in autistic adolescents." Small participant numbers means one has to be quite careful about making sweeping generalisations.

If that study aim - identity, acculturation and mental health - sounds a little bit like psychobabble to you, the long-and-short of it was to look-see whether there was a possible link between how young autistic people / people with autism see themselves ("the way a person understands and views him or herself, and is often viewed by others") and their self-reported mental health; also including the concept of 'autistic culture' into the research mix.

OK, first things first: autistic culture. From what I read, it kinda sits somewhere around the idea of 'neurodiversity' (see here) with culture defined as "a system of meanings through which people organise and make sense of their lives." The addition of the word 'autistic' to culture therefore means "building a culture around the ways of speaking, thinking, and acting that come naturally to autistic people." The authors liken autistic culture to deaf culture "with both being supportive communities focused on the distinctive issues and experiences related to being autistic or deaf." Noble intentions on both counts.

Study participants were given the Twenty Statements Task (TST) - "a measure used to assess how individuals define themselves using their own words" - and the Autism Identity Scale (AIS) which "looks at whether an individual aligns more to an autistic or non-autistic culture." Responses to these instruments and to the Strengths and Difficulties Questionnaire (SDQ) were captured and analysed.

Results: I should point out that the AIS used in this study is not exactly what one would call a 'mainstream' instrument. Indeed, the reference for it's development and use comes from a doctoral thesis which, as far as I can see, is the only reference at the present time. The authors talk about responses on the AIS being use to rank participants into one of four groups: "Marginalised (alignment to non-autistic culture)... Bicultural (alignment to both cultures)... Assimilated (alignment to neither culture)... and Separated (alignment to autistic culture)." I'm not altogether sure but I think some of those groupings and their descriptions mentioned by Cresswell/Cage might not be exactly the same as that talked about in the thesis from Jarrett (see page 20 of the thesis). The AIS by the way, purports to measure both "autistic (AIS1) and non-autistic (AIS2) acculturation."

Cresswell/Cage observed that: "Average scores on the AIS2 were higher than the AIS1, indicating autistic adolescents typically felt more aligned to non-autistic, than autistic, culture." Minus any sweeping generalisations, this meant that participants as a group were typically more inclined towards statements like "I feel that I fit in with other people who do not have autism" and "I would prefer my education to be at a school with and without people with autism" over and above "Being autistic is an important part of who I am" and "I would prefer my closest friend(s) to have autism." Again, I reiterate that no sweeping generalisations are to be made from such findings on the basis of such a small participant group. Also added to those alignment findings, researchers observed some potentially important connections to SDQ scores used as a proxy for self-reported mental health and wellbeing. Specifically that the "lowest scores [on the SDQ] were found in those who aligned themselves only non-to autistic culture (assimilated; n = 7)." This *could* be translated to mean that self-reported mental health and wellbeing was marginally better for those who identified with a specific culture and, in particular, non-autistic culture.

I kinda get the impression that the results garnered during this study weren't exactly what the authors were expecting. Indeed, as I've mentioned before on this blog, there is 'slant' towards the whole neurodiversity angle in other research from some of the authors of this study (see here and see here) which would have probably benefited from different results being observed on this most recent research occasion. Credit is therefore due to the authors for publishing their findings. The inclusion of phrases such as: "These findings suggest autistic adolescents should be encouraged to explore autistic culture and supported in constructing their identity" included in the paper poses a bit of a quandary because that's not entirely what the resultant data implied. I've seen similar things particularly where neurodiversity has been mentioned in the context of autism before (see here). Indeed when we are also told that "less than half of participants mentioned autism in their identity descriptions", one interpretation is that many participants see/saw themselves as so much more than the sum of a clinical diagnosis they've received at some point. I daresay others will have alternative explanations for such findings.

More study is required on this topic. More study around the issue of 'belonging' in the context of autism, and the potential 'positives' that belonging brings (see here), is something that stands out from the Cresswell/Cage findings. Insofar as the concept of autistic culture, well, we'll have to see. Much like the term 'autistic community' (see here) used on more than one occasion, the inference is that there's some universal 'one-size-fits-all' ethos that everyone on the autism spectrum should be adhering too. The reality however, is some much more varied and complicated, bearing in mind the oft-used phrase: if you've met one autistic person, you've met one person with autism (or words to that effect). Yes, people should be proud of themselves. Everyone should have a sense of self-worth, achievement and that word again, belonging. But as per the small scale results from Cresswell/Cage, that pride and identity does not necessarily have to mean aligning oneself according to the receipt of a clinical diagnosis...

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[1] Cresswell L. & Cage E. ‘Who Am I?’: An Exploratory Study of the Relationships Between Identity, Acculturation and Mental Health in Autistic Adolescents. J Autism Dev Disord. 2019. April 19.

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On gut bacteria and depression

I'm kinda standing on the shoulders of giants with this post talking about the findings reported by Mireia Valles-Colomer and colleagues [1]. An editorial published in Nature [2] to coincide with the publication of the Valles-Colomer paper says just about everything that needs to be said on this research, which observed that: "Gut–brain module analysis of faecal metagenomes identified the microbial synthesis potential of the dopamine metabolite 3,4-dihydroxyphenylacetic acid as correlating positively with mental quality of life and indicated a potential role of microbial γ-aminobutyric acid production in depression." Yes folks, the idea that "microorganisms in the human gut could influence the brain" is moving from 'wild idea' to "wise pursuit".

The sequencing of DNA from donor stool samples as part of the Flemish Gut Flora Project ('You too are a walking bacteria colony' is the strap line) was the starting point for the Valles-Colomer study; stool samples provided by over 1000 participants. Researchers also accessed data on both self-reported and "physician-diagnosed depression" and set to work looking for any potentially important correlates between bacteria and psychology. The words "with validation in independent data sets (ntotal = 1,070)" are also (importantly) mentioned in the Valles-Colomer paper. Oh, and they also "mined the data to generate a catalogue describing the microbiota’s capacity to produce or degrade molecules that can interact with the human nervous system."

Results: "Butyrate-producing Faecalibacterium and Coprococcus bacteria were consistently associated with higher quality of life indicators." There's that word again: butyrate and yet more positive publicity for this compound (see here) and it's standing reaching almost 'bacterial sainthood'. Researchers also observed that two groups of bacteria were also reduced in those with depression: Coprococcus and Dialister alongside observing that this finding held "even after correcting for the confounding effects of antidepressants [use]." And then there was that 3,4-dihydroxyphenylacetic acid, also called DOPAC, finding, a metabolite of the neurotransmitter dopamine. I have actually mentioned DOPAC before on this blog (see here) in relation to what happens when rats are subjected to 'early immune stimulation' [2]. I don't think there is much overlap between that rat study and the Valles-Colomer paper (that rat paper was looking at DOPAC levels in brain tissue for example) but the suggestion from the authors that DOPAC levels were "correlating positively with mental quality of life" requires quite a bit more investigation.

Caveats? Well, out of their initial 1054 participant cohort, only 121 participants had "GP-reported depression." About half of these participants were taking antidepressants for their depression, the others weren't. The participant numbers aren't exactly tremendous for this portion of the study. Similar to something mentioned in other research (see here), I'm also minded to suggest that future research might perhaps consider looking at multiple stool samples taken over different occasions for the same person. This would perhaps establish whether gut bacterial populations are stable and whether that stability translates into stability of something like depressive symptoms too. I am likewise cautious that we don't jump ahead of ourselves here in terms of important issues like cause-and-effect and for example; whether there may be other important 'influencers' of gut bacteria when it comes to depression (see here and see here).

Lots more study is required on the suggestion of a gut bacterial *link* to depression [3], including that focused on the mechanics of any relationship (e.g. any involvement of the vagus nerve). If the link is further established, there are a number of potentially important implications: the possibility of a 'bacterial transferability hypothesis of [some] depression' (see here), intervention options focused on redressing balance in bacterial colonies (see here) and what such findings might do for the whole 'gut-brain axis' idea.

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[1] Valles-Colomer M. et al. The neuroactive potential of the human gut microbiota in quality of life and depression. Nature Microbiology. 2019. Feb 4.

[2] Editorial. Links between gut microbes and depression strengthened. Nature. 2019. Feb 4.

[3] Cheung SG. et al. Systematic Review of Gut Microbiota and Major Depression. Front Psychiatry. 2019;10:34.

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"two in five young people scoring above thresholds for emotional problems, conduct problems or hyperactivity"

The quote titling this post - "two in five young people scoring above thresholds for emotional problems, conduct problems or hyperactivity" - comes from the eye-opening findings published by Jessica Deighton and colleagues [1] (open-access available here).

It's based on a study of over 28,000 adolescents here in Blighty: "51.2% of whom were in Year 7 (age 11–12) and 48.8% of whom were in Year 9 (age 13–14) in 97 state-maintained secondary schools across six geographical locations in England."

Said young people were given the "child self-report Strengths and Difficulties Questionnaire (SDQ)" to complete, and the received data were analysed alongside other information collected by the authors "from the National Pupil Database: SEN status; FSM eligibility; child in need status (CIN, this is a child who either (a) is unlikely to achieve/maintain a reasonable standard of health and development without local authority provision; (b) is likely to be impaired without local authority provision; or (c) is disabled); and ethnicity (Asian, Black, Chinese, Mixed, White or any other ethnic group)."

In more detail: "18.4% scored above the abnormal threshold for emotional symptoms, 18.5% for conduct problems, 25.3% for inattention/hyperactivity and 7.3% for peer-relationship problems." Going back to the title of this post, researchers mention how "around two in five young people scoring above ‘abnormal’ thresholds for three of the four problem areas measured (emotional problems, conduct problems and hyperactivity)." They also observed that:

• SEN - special educational needs - status played a role in those figures (those with SEN were consistently more likely to provide an above-threshold response to all the areas measured, particularly peer-relationship problems). 
• Entitlement to free school meals (FSM), a potential marker of deprivation, was also associated with an above-threshold response to all areas.
• "Being male significantly increased the odds of scoring above threshold for behavioural problems and inattention/hyperactivity, whereas being female significantly increased the odds of experiencing emotional symptoms."

There are caveats attached to the Deighton findings; not least the sole reliance on "child self-report data from a very brief assessment tool" without any accompanying further analysis on the presence (or not) of diagnosable psychopathology. But, in the context of the large participant number included for study and that most adolescents aren't likely to 'lie' about their positive responses to items such as "I get very angry and often lose my temper" or "I take things that are not mine from home, school or elsewhere" I'd be inclined to view the Deighton findings as a pretty accurate representation of their 'in the thousands' cohort.

So where next? Well, if we're talking about findings observing that "42.5% scored above threshold for any one of the first three problem scales (emotional symptoms, conduct problems or inattention/hyperactivity)" we have to talk about what services are in place (and should be in place) to support this large group. This, on the basis that, such 'problems' can potentially lead to various other 'adverse' outcomes both in later childhood and beyond. And when I talk about 'support', I mean both support and intervention to help those young adults to manage such issues. All of this set in the context of a continually squeezed financial and resource position (at least here in Blighty).

The other question has to be 'why'? Why have so many young people reported as they have? Deighton et al talk about various factors as potentially being important: "the impact of austerity, increasing experience of academic pressures, reduced rates of sleep and increased use of social media", to a large extent talking about the social environment as playing a significant role. I don't doubt that these external factors and other related variables will play a role in how young people are reporting, but I'm not convinced that the social environment is the only important factor to consider. It's not, for example, beyond the realms of possibility that other genetic and non-genetic variables (i.e. in the physical environment) could also play a role; something I say in the context of a 'growth' in the number of children and young adults being diagnosed with all-manner of different behavioural and/or psychiatric labels (see here and see here for examples).

Something important seems to be going on with our young people (see here and see here). We have to assume that such an issue is not going to resolve itself and may even increase in terms of numbers as time goes on. We really need to find out what factors are behind this and start taking action... like now.

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[1] Deighton J. et al. Prevalence of mental health problems in schools: poverty and other risk factors among 28 000 adolescents in England. Br J Psychiatry. 2019 Jan 30:1-3.

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"people on the autism spectrum have a high prevalence of physical and mental health conditions in midlife and old age"

Should anyone really be that surprised by the findings reported by Lauren Bishop-Fitzpatrick & Eric Rubenstein [1] talking about "a high prevalence of physical and mental health conditions in midlife and old age" when it comes to autism?

Well, yes and no. No, because things like 'psychiatric symptoms and disorders' have already been talked about with regards to older age adults with autism [2] (see here also), alongside various other 'medical comorbidity' being noted in this group (see here). But also yes, because the scale of the physical and mental health conditions identified by Bishop-Fitzpatrick & Rubenstein is quite literally jaw-dropping: "immune conditions (70.6%), cardiovascular disease (49.0%) and its risk factors (46.2%), sleep disorders (85.3%), gastrointestinal disorders (49.7%), neurologic conditions (55.9%), and psychiatric disorders (72.0%) were highly prevalent in our full sample." Said full sample consisted of "de-identified Medicaid claims data for 143 adults with a recorded autism spectrum disorder diagnosis aged 40–88 years."

Researchers also mention how 44% of their sample had an intellectual (learning) disability. This kinda accords with various other data on this topic (see here). Other observations mentioned by the authors also complement existing (peer-reviewed scientific) knowledge that: (a) intellectual (learning) disability seems to bring about an increased risk of epilepsy appearing alongside autism (see here), and (b) depression and anxiety prevalence seems to be particularly elevated in those with autism without any accompanying learning disability (see here) (assuming that depression and/or anxiety are actually being screened for in those with autism + learning disability).

What do the collected data imply? Well, screening is important. Screen and screen and screen and screen. Screen for lots of things, and if something turns up, treat / manage it. If your average Jane or Joe turned up at their Doctors office with a sleep disorder or the symptoms of cardiovascular disease, medical professionals would do something about it. If the Doctor also knew that Jane / Joe might, for example, be more likely than usual to be in receipt of certain classes of medicines that potentially elevates such risks further, they'd be even more keen to screen and intervene. So it should be the same if Joe or Jane is diagnosed with autism or an autism spectrum disorder (ASD).

I'd also suggest that such data should really be leading to a lot more questioning about why? Why do people on the autism spectrum seem to be at particularly high risk of 'immune conditions' or 'digestive disorders'? Are there potential genetic links between autism and such conditions as per the notion that 'autism genes aren't necessarily just genes for autism' (see here) or that such genes might also affect other biological systems as well as the grey-pink matter floating around the skull (see here for example)? Are there other intricate connections between such classes of conditions as per the idea that sleep problems seem to follow gut problems for some (see here)? Why? Pain, discomfort, something else? And don't even get me started on the whole 'immune system - autism' connection (see here for example) which has been known about for many, many, many years. Known about but brushed under the carpet by some.

And whilst talking about the research tag-team that is Bishop-Fitzpatrick & Rubenstein, I once again would direct you to another important paper of theirs [3] about how we need to be very careful about using the word 'comorbidity' when referring to the various mental and physical issues that are over-represented around autism. As we've seen from other research (see here and see here), the core features of autism may very well predispose to a lot more than just autism and, in that respect, this might go way beyond just comorbidity...

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[1] Bishop-Fitzpatrick L. & Rubenstein E. The physical and mental health of middle aged and older adults on the autism spectrum and the impact of intellectual disability. Research in Autism Spectrum Disorders. 2019. Jan 29.

[2] Lugo-Marín J. et al. Prevalence of psychiatric disorders in adults with autism spectrum disorder: A systematic review and meta-analysis. Research in Autism Spectrum Disorders. 2019; 59: 22-33.

[3] Rubenstein E. & Bishop-Fitzpatrick L. A matter of time: The necessity of temporal language in research on health conditions that present with autism spectrum disorder. Autism Res. 2019 Jan;12(1):20-25.

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"an urgent need for autism treatment pathways in mental health services"

Of the many and varied important clinical and research areas connected to a diagnosis of autism or autism spectrum disorder (ASD), the provision of services to manage and treat mental health issues in the context of autism must rank high on the list of needs and priorities.

It's with this in mind that I turn my blogging attention to the findings reported by Louise Camm-Crosbie and colleagues [1] and their findings observing three important themes around the issue of mental health and (adult) autism: "(1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future." All of this is set within the idea that various mental health issues seem to be over-represented when it comes to autism (see here and see here and see here  and see here for examples) and the lack of support and management of such issues can sometimes have devastating consequences (see here).

So: "In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time." The partnership bit ties in with the increasingly discussed 'participatory research' theme in some autism research circles (see here), where stakeholders are seen as partners driving a study or research agenda rather than just passive participants who are the topic of a particular study. The 'online survey' bit also continues a theme where technology means that participation doesn't mean having to be questioned face-to-face. Said survey was completed by 200 autistic adults ("122 females, 77 males and 1 unreported") and results covered an array of different issues, including some previously discussed by some authors on the Camm-Crosbie paper on other [important] research occasions (see here).

Alongside those three themes that emerged from the data, researchers also reported that: "In relation to treatment for mental health, self-injury and suicidality (n = 197), 164 participants (83.2%) were currently receiving/had previously received treatment, 29 participants (14.7%) needed/currently needed treatment but had not received it and 4 participants (2%) did not need treatment." As you can see from the figures, particularly that 2% not needing treatment, mental health issues (including self-injury and suicidality under that banner) are very much present when it comes to a diagnosis of autism, at least in this cohort.

Various other observations were reported on in the study; many of them pertinent to the another important theme coming from the article: "although participants reported experiences of being excluded from mental health services, with potentially tragic consequences for their well-being, there are also examples of participants benefitting from tailored support and treatment, which had a positive effect on their well-being." In other words, look to the individual and their wants, needs and wishes, and adapt accordingly. Not exactly rocket science.

So, what can be done to help ameliorate the issues identified by Camm-Crosbie et al and ensure that suitable 'tailored support and treatment' is offered? Well, the short answer is investment. Monetary investment. I could go for the 'low-hanging fruit' by saying that awareness of mental health issues in relation to autism needs to be improved among professional bodies, but the core material to aid such awareness is money. I could also go on about further dedicated resources needing to be put in place to support autistic adults (and children) with mental health issues, but the core material to get such resources is, once again, money. Money. And unfortunately in these austere times that we continually live in, where social care funding in particular, seems to have been cut to the bone, money for such issues is seemingly in short supply. Indeed, it seems that only when a crisis point is reached by an individual is anything actually done about something like mental health issues. And with all due respect to the hard working people who work in the mental health sector, after a crisis has been reached and 'managed', normal service seems to resume until another crisis comes along. The reason? Money yet again. The solution: put more money into this important issue. It will definitely help.

And whilst the focus of the Camm-Crosbie paper was adults with autism "without co-occurring intellectual disability", I also have to ask the question: what about those autistic people who are not able to complete online surveys and their mental health needs? Who's taking an interest in them? Are they, yet again, the understudied and underrepresented in autism research (see here)? There may be quite a bit to see [2]...

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[1] Camm-Crosbie L. et al. 'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism. 2018 Nov 29:1362361318816053.

[2] Baudewijns L. et al. Problem behaviours and Major Depressive Disorder in adults with intellectual disability and autism. Psychiatry Res. 2018 Dec;270:769-774.

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Autism and learning disability: "double disadvantage" on health status

The paper published by Kirsty Dunn and colleagues [1] continues a theme on how Census information - where data is systematically recorded about a specific population, normally a country - is influencing autism research (see here and see here). The Census in question is "Scotland's Census, 2011" and the rather forward facing step to include some questions about autism and learning (intellectual) disability in the Scottish Census for 2011.

This time around the same research group, who were very much involved in the publication of other Census based information on autism, set out with the aim to examine "the population prevalence of co-occurring intellectual disabilities and autism, and its impact on general health status." From a total population of over 5.2 million people who were included in the Scottish Census in 2011, they observed that about around 0.1% "had co-occurring intellectual disabilities and autism." Although perhaps not sounding like a lot of people, that percentage represented over 5000 people, including children and adults. Most of those with autism and learning disability were male.

Then to the headline conclusion related to the "double disadvantage" mentioned in the title of this post from the Dunn paper: "Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day-to-day activities." Researchers also mention how poor general health status was "apparent across the entire life course." They further recommended that: "Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities."

I know the use of the words "double disadvantage" are probably not going to be well received by everyone, particularly those who insist that autism is more about difference than disability. I'm in partial agreement that, whilst a diagnosis of autism does have a profound influence on many aspects of life, not everything is necessarily to be seen as a 'disadvantage' for everyone. When it comes however to health inequality in the context of autism (and learning disability), I don't think many people would argue with the idea that both in the context of autism alone and autism + learning disability, various aspects of health - physical and mental - can and do suffer as a result (see here and see here for examples) and are, in that light, a disadvantage. With all this in mind, the call to action made by Dunn et al is not without some substantial merit...

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[1] Dunn K. et al. The prevalence and general health status of people with intellectual disabilities and autism co-occurring together: a total population study. J Intellect Disabil Res. 2018 Nov 28.

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ADHD in a 'detention setting': meta-analysed

"Our results confirmed the high prevalence rate of ADHD [attention deficit hyperactivity disorder] among PLD [people living in detention], corresponding to a five-fold increase compared to the general population."

So said the meta-analysis findings reported by Stéphanie Baggio and colleagues [1] pulling together the current peer-reviewed research literature - "between January 1, 1966 and January 2, 2018" - on the estimated rate of ADHD in the prison/incarcerated population. The intention to undertake this meta-analysis had already been previously published (see here).

This is a topic that has been covered before on this blog (see here and see here for examples). It strikes to the heart of the idea that a diagnosis of ADHD (or the presence of significant ADHD-linked behaviours) confers an elevated risk for various adverse outcomes (see here and see here for another couple of such outcomes). It also implies that we need to know more about the 'hows-and-whys' of such elevated risks and what can be done to reduce or minimise them as and when ADHD is diagnosed...

Baggio et al describe how they boiled down the available research literature to just over 100 studies including data on nearly 70,000 participants. The studies covered various geographical locations and looked across various ages. We are told that: "The ADHD adolescent/adult meta-analytic prevalence estimate was 26.2%." So about 1 in 4 of the total incarcerated population included for study met the diagnostic criteria for ADHD. When looking at the 'retrospective assessment of ADHD in childhood' this figure climbed to over 40%. When researchers looked for any differences across the diagnostic criteria used (including DSM-5), they found no significant differences. They conclude that the rate of ADHD in PLD is quite a bit higher than that reported in the population at large.

"These results suggest that PLD bear a heavy mental health burden on secure services as around one-third may require treatment for ADHD." This is important. It reiterates that alongside the personal effects that ADHD has, there are also societal implications too. I know this is not exactly great PR when it comes to ADHD, but lives are needlessly being wasted when spent in captivity; lives that could be so much more productive in other circumstances.

Other important questions are asked by Baggio and colleagues too; questions around whether suitable "treatment, monitoring, and care for ADHD during and after detention" could aid in cutting re-offending rates and offering those who were detained a better life. I'd have to say that 'yes' is the most likely answer to this question; bearing in mind that offending behaviour is multi-faceted in terms of individual and other more socially and environmentally driven factors. But we have to, as a society, at least try...

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[1] Baggio S. et al. Prevalence of Attention Deficit Hyperactivity Disorder in Detention Settings: A Systematic Review and Meta-Analysis. Front Psychiatry. 2018 Aug 2;9:331.

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Screening for autism 'symptom complexes' among residents in secure children's homes

A secure children's home (SCH) mentioned in the title of this post typically refers to a place where care and accommodation is given to "children and young people who have been detained or sentenced by the Youth Justice Board (YJB) and those who have been remanded to secure Local Authority (LA) accommodation." The paper published by P.J. Kennedy and colleagues [1] provides some interesting details about the prevalence of autism or "symptom complexes compatible with ASD [autism spectrum disorder]" among young people residing in two SCHs here in Blighty, alongside some initial demographic data around those detected.

Over 110 adolescents housed in SCHs were included for study, where their support workers completed the Social Communication Questionnaire (SCQ) on their behalf. The SCQ is one of the more important autism screening questionnaires. It's not however considered 'diagnostic' and is not without it's issues (see here), hence the use of the words "Symptom Complexes Compatible with Autistic Spectrum Disorder" by Kennedy et al. The results suggested that approaching 15% of their cohort were judged to present with symptoms/traits compatible with a diagnosis of ASD. Authors also mentioned how certain 'aspects' of positive screeners might also be important; for example, "differences in gender, legal status and a history of Child Sexual Exploitation (CSE)." There's also mention of an important word - 'vulnerability' - in the Kennedy paper, which I've often said is still very much under-used when it comes to the autism spectrum (see here and see here for examples).

Whilst further work is required on autism (whether in diagnosis or 'symptom complexes') in the context of SCHs, the suggestion that autism or autistic traits may be over-represented among SCH residents is an important one. I should add that whilst SCHs house those who have been 'detained or sentenced by the Youth Justice Board' they do also cater for quite a wide range of issues/difficulties outside of those presenting with offending behaviour. This includes those who may be at risk to themselves and others alongside those with mental health difficulties. This is an important detail in the context that I don't want to promulgate the idea that towards 15% of 'offenders' have an undiagnosed autism spectrum disorder (ASD). We don't yet know this, and need to keep in mind other important issues such as the growing realisation that autism rarely exists in a diagnostic vacuum (see here) and what that might mean for those on the autism spectrum who do offend (see here).

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[1] Kennedy PJ. et al. Brief Report: Using the Social Communication Questionnaire to Identify Young People Residing in Secure Children's Homes with Symptom Complexes Compatible with Autistic Spectrum Disorder. J Autism Dev Disord. 2018 Jul 17.

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Vitamin D deficiency in adult patients admitted to a psychiatric ward: same as before

The 'same as before' part of the title of this post refers to the observation that vitamin D deficiency is not an uncommon feature for those admitted to psychiatric hospitals (see here and see here).

This time around I present the results published by Dipen Patel & Manjunath Minajagi [1] who reported that: "49% (N = 51) of participants were vitamin D deficient (serum 25(OH)D <30 nmol/L), and a further 42% (N = 44) were vitamin D insufficient (<50 nmol/L); 8.7% (N = 9) of participants were vitamin D sufficient (>50 nmol/L)."

'Participants' mentioned by Patel & Minajagi, referred to 104 adults (average age of 40) admitted to a psychiatric hospital who provided written consent to participate in their study and were diagnosed with a range of psychiatric disorders including "depressive episode", "bipolar affective disorder", "schizophrenia" and/or "personality disorder". We are told that: "Vitamin D levels were requested alongside standard admission blood tests on serum samples collected by venepuncture." Sounds like a good call by all accounts.

Alongside noting those quite important numbers/percentages of vitamin D deficiency and insufficiency (see here for more information about the distinction), authors also reported that: "There were no statistically significant differences noted in mean serum 25(OH)D associated with gender, age or primary diagnosis." They did however mention that: "Mean serum 25(OH)D was higher in participants of White British ethnicity compared with those of other ethnic backgrounds" indicating that skin colour probably plays a role in vitamin D production/levels. A shocker indeed [2].

"At the current time, there is insufficient evidence to draw any firm conclusions regarding an association between vitamin D deficiency and non-musculoskeletal health outcomes, including mental illness. More research in the form of larger epidemiological and intervention studies are needed to investigate the association between vitamin D and mental health outcomes; indeed, randomised controlled trials are planned that will hopefully shed more light on this intriguing area in the future." Sorry about the large text grab noted in that last sentence, but the authors said it better than I ever could in terms of (a) being cautious about making any specific connections between vitamin D deficiency/insufficiency and 'mental illness' and (b) the value of supplementation (see here and see here) outside of just restoring vitamin D levels to where they should be.

That being said, there is a further scheme of work to look at drawing on data from other labels (see here for example). Remembering also that, minus too many sweeping generalisations, some of the other health issues that seem to follow a psychiatric label *might* also show some involvement with vitamin D [3] too...

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[1] Patel D. & Minajagi M. Prevalence of vitamin D deficiency in adult patients admitted to a psychiatric hospital. BJPsych Bull. 2018 May 2:1-4.

[2] Bonilla C. et al. Skin pigmentation, sun exposure and vitamin D levels in children of the Avon Longitudinal Study of Parents and Children. BMC Public Health. 2014;14:597.

[3] Lu L. et al. Association of vitamin D with risk of type 2 diabetes: A Mendelian randomisation study in European and Chinese adults. PLoS Med. 2018 May 2;15(5):e1002566.

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Chronic kidney disease is over-represented in cases of serious mental illness

The findings reported by Masao Iwagami and colleagues [1] observing that "CKD [chronic kidney disease] is identified more commonly among patients with SMI [serious mental illness] than in the general population" are not entirely novel. I've touched upon this topic before (see here), set within the broader perspective that physical / somatic ailments experienced by those with a psychiatric and/or behavioural diagnosis can sometimes be 'downplayed' in light of their receipt of a 'primary' psychiatric / behavioural label. It stretches across various different labels (see here for example) with sometimes catastrophic outcomes.

Iwagami et al started out with the premise that risk factors for CKD - "a long-term condition where the kidneys don't work as well as they should" - including tobacco smoking and diabetes, are more frequently reported in those diagnosed with an SMI, hence their risk of CKD may be greater. To see if there was any heightened association between SMI and CKD here in Blighty, they relied on data from a resource called the Clinical Practice Research Datalink (CPRD). CPRD allows researchers to access various details from patient records based on the accrual of primary healthcare data. Importantly, as well as containing read codes for SMI, the database also includes laboratory test results pertinent to CKD: "CKD was based on two measurements of estimated glomerular filtration rate <60 mL/min/1.73 m2 separated by 3 months or longer; calculated from serum creatinine." The combined data was analysed and 'adjusted' for various potentially confounding variables including lithium use (lithium can affect kidney function).

From a starting population of some 2.5 million people (records), authors identified a diagnosis of SMI in about 28,000 (~1%). Most of those 28,000 or so diagnosed with a SMI had no history of lithium use (24,101 / 28,396). The prevalence of CKD was 14.6% in those with a SMI and history of lithium use. The prevalence of CKD was 3.3% in those with a SMI and no history of lithium use. This compares with a CKD prevalence rate of 2.1% in the population not diagnosed with a SMI (N=2,387,988). Ergo: "patients with SMI had a greater prevalence of CKD compared to the general population." Authors also mention how risk of renal replacement therapy (RRT) was also increased in those with a SMI.

This is important data. It's not foolproof data insofar as "a greater prevalence of CKD among patients with SMI may, in part, be influenced by surveillance or ascertainment bias. Patients with SMI take medications, such as lithium and other psychotropic drugs, which need regular monitoring." It does however suggest that regular screening for CKD needs to be a priority for those diagnosed with a SMI particularly given that "CKD is strongly and independently associated with mortality and cardiovascular risk" (something else mentioned in the context of certain psychiatric diagnoses). But there is also something rather uncomfortable in the Iwagami results: that possibility of an advanced risk of CKD in cases of SMI with a history of lithium use.

Minus any clinical or medical advice given or intended on this blog, I can see why the authors haven't overplayed the potential effect of lithium use on their results. Lithium, in the context of various psychiatric disorders and beyond, is an important medication, particularly when it comes to its proposed properties as an 'anti-suicidal' agent (see here). It really does save lives. But as with just about every medicine available, there is an important cost-benefit ratio to take into account when prescribing this medication and ensuring regular monitoring is available to minimise any side-effects. I might also add that there are *possibilities* [2] when it comes to potentially reducing some of the effects that lithium use might have on kidney function but I'll leave such discussions to the experts.

For now, we have further evidence that for whatever reason(s), being diagnosed with a SMI has the potential to impact on many areas of health, both mental and physical.

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[1] Iwagami M. et al. Severe mental illness and chronic kidney disease: a cross-sectional study in the United Kingdom. Clin Epidemiol. 2018 Apr 16;10:421-429.

[2] Lodin M. & Dwyer J. The role of amiloride in managing patients with lithium‐induced nephrogenic diabetes insipidus. J Pharmacy Practice & Research. 2017; 47(5): 389-392.

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'Artistic creativity' and risk of hospitalisation for schizophrenia, bipolar disorder and unipolar depression

"Students of artistic subjects at university are at increased risk of developing schizophrenia, bipolar disorder and unipolar depression in adulthood."

So concluded the findings reported by James MacCabe and colleagues [1] who set about examining whether studying a creative subject at high school or university placed someone at an enhanced risk of later hospitalisation for a mental disorder such as schizophrenia, bipolar disorder or depression. The rationale behind the research was the 'long-standing idea' that "mental disorders are associated with enhanced creativity, intelligence or artistic talent."

To test the hypothesis, researchers employed some of those fabulous Scandinavian population registries (yet again), this time covering the population of Sweden. Based on the "unique registration number carried by all Swedish residents" they were able to look at educational records, results of intelligence tests (via testing during military service) and details of any psychiatric hospitalisations for nearly 4.5 millions people. A creative subject studied at high school or University was defined in both a broad sense - "which included a wider variety of creative or artistic subjects corresponding to ‘Art and Media’... but excluding ‘Science and History of Art, Music, Dance, Film and Theatre’" and also following a narrower definition: "comprising visual arts, music, dance, theatre and drama, film, radio and TV production, and fashion design." As I said, a fabulous population resource.

Results: about 5% of the population studied (~194,000) were deemed to have studied an artistically creative subject by the broad definition, falling to just over 1% (50,000) when the narrow criteria were followed. As per that opening sentence of this post, there did seem to be something in the idea that studying an artistically creative subject was *associated* with hospitalisation for schizophrenia, bipolar disorder and unipolar depression. Authors also noted that: "The associations remain when the analyses are restricted to sibling pairs, indicating that family-level factors alone cannot explain the association."

The possible reasons for this association are also explored by MacCabe et al. The ‘balancing selection’ hypothesis is mentioned whereby "the genetic variants conferring risk for psychosis also carry a biological advantage, such as enhanced intelligence or creativity, and this translates into reproductive advantage in the relatives of those with psychoses; thus maintaining the frequency of risk alleles in the population." Similar to the idea that the genetics of autism are probably not just 'genes for autism' (see here) so the genetics potentially linked to psychiatric disorders such as schizophrenia, probably also affect other areas of functioning (positively and negatively). Authors also entertain more 'psychological theory' (here we go) where, for example: "certain cognitive styles may be associated with artistic creativity and psychosis." Personally, I'd be more inclined to believe the first explanation over the second on the basis that 'cognitive styles' tends to make rather sweeping generalisations (see here for an example) and are rather difficult to confirm/refute from a scientific perspective.

Despite the results obtained by MacCabe, I am not totally convinced of any universally general connection between artistic creativity (or any other kind of creativity) and psychiatric disorder. I say this on the basis of other, independent findings (see here) that have not been so kind to the hypothesis. I'm also a little cautious that making such sweeping generalisations could potentially detract from the often very significant effects that such psychiatric disorders have on a person's life; many of which can lead to issues such as 'hospitalisation' (where hospital records were an important data source for the authors in this study).

Still, these are interesting results and have grabbed some media attention...

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[1] MacCabe JH. et al. Artistic creativity and risk for schizophrenia, bipolar disorder and unipolar depression: a Swedish population-based case–control study and sib-pair analysis. British Journal of Psychiatry. 2018. April 26.

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What factors potentially predict quality of life in adults with autism?

"The study findings are that autistic people on average have lower QoL [quality of life] than the general population in the UK." Further: "Three main characteristics were predictive of lower QoL in almost all domains: being female, having a current mental health diagnosis and higher severity of autism symptoms." By contrast: "Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL)."

So said the findings reported by David Mason and colleagues [1] describing the results of a study that examined "quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL." This is a vitally important topic because perceived quality of life IS important and has been discussed before in the peer-reviewed research arena with autism in mind (see here).

This time around the focus was on 'self-reported' quality of life for autistic adults who submitted data as part of a research initiative "into the life experiences of autistic adults, the Adult Autism Spectrum Cohort‐UK." Some 370 people (mostly) formally diagnosed with an autism spectrum disorder (ASD) completed the WHOQoL‐BREF, a quality of life assessment schedule developed by the World Health Organisation, as well as the Social Responsiveness Scale (SRS) and a initiative-specific questionnaire that collected various information including that about "everyday life including relationship status; home life including living alone or with family members (family of origin or spouse/partner); employment including paid employment, volunteering, or retired; education including type of school and qualifications achieved; support including who supports the adult and how often support is needed; mental health/neurological conditions including current diagnoses and type of medication/therapy; physical health conditions; and autism spectrum in other family members." Acquired data was put into the statistical 'measuring' machine and trends were reported.

So, a large proportion of participants were aged between 41 and 60 years old (~40%). The sex/gender ratios were fairly evenly split (males: 54% vs. females: 43% vs. 'prefer not to say' ~3%). The vast majority of respondents reported either a mental health issue as being concurrent to their autism diagnosis/status (~70%) or a physical health issue as being present (70%). I don't think we were actually told all the specific diagnostic categories that were included under 'a mental health issue' or 'a physical health issue' but some clues are provided in the text: "most commonly depression and/or anxiety" and "sleep problems, or hypertension." The WHOQoL‐BREF, by the way, provides information on QoL in various domains: physical, psychological, social and environment. Authors therefore report that: "Reported QoL for autistic adults was lower across all four domains than UK norms."

Then to those potential predictors of 'poorer' or 'better' quality of life, as some further statistical analysis was actioned on the collected data. Quite consistently - in the physical, psychological and environment domains - the same three elements cropped up as potentially predicting poorer quality of life: being female, having a comorbid mental health diagnosis and total scores on the SRS (an instrument that "measures autism characteristics" with a focus on social aspects). Looking at the statistical strength of the various factors observed, I'd have to say that the SRS score (total) - that measure of 'autism characteristics' - was the one that seemed to be most strongly related to QoL. Yes, the implications are that the [social] manifestation of autism itself *could* be an important driver of poorer QoL. Insofar as the factors potentially related to a more positive (better) quality of life, being employed, receiving support and being in a relationship were all mentioned, but certainly not as consistently across all the various WHOQoL‐BREF domains as noted in those negative predictors.

The authors highlight a few positives and negatives in relation to their study: use of a "robust measure of QoL is a strength", pretty large sample size and the collection of some good quality 'complete' results. That being said, they also note that a general QoL questionnaire might not gather all the important information relevant to QoL in the context of autism (I do wonder if all that ICF core sets of autism work might help matters on future research occasions). And then there's the issue of representativeness to consider, when it comes to the applicability of Mason results to the (very) wide autism spectrum (see here)...

Recommendations - 'implications' - aplenty spring from the Mason results. Focus in on better screening and treatment/management of mental health (and physical health) issues when concurrent to an autism diagnosis (see here and see here for examples). Make employment - long-term employment - work better for those on the autism spectrum (see here). Devote greater resources to discovering what factors surrounding female autism might lead to poorer quality of life. All noble sentiments worth pursuing. Alongside, are those results about autism severity also seemingly impacting on QoL. Does this perhaps also imply that moves to 'intervene' on core autistic symptoms might also be a target too? Y'know, on the understanding that 'core autism features' have also been *correlated* to some other, rather extreme endpoints also significantly affecting quality of life (see here)?

Addition: 10 May 2018. Y'know I mentioned that SRS scores - "measures autism characteristics" - might be an important variable when it comes to quality of life? Well, it seems another cohort came to similar conclusions [2] (click here for a larger view of figure b and those self SRS scores)...

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[1] Mason D. et al. Predictors of quality of life for autistic adults.  Autism Res. 2018. May 7.

[2] Oakley B. et al. Why Is Quality of Life Reduced in Individuals with Autism Spectrum Conditions? Investigating the Impact of Core Symptoms and Psychiatric Comorbidities on Quality of Life in the EU-AIMS LEAP Cohort. INSAR 2018.

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Violent ideation and behavior in relation to serious mental illness: substance abuse counts

I approach the findings reported by Matthew Roché and colleagues [1] in the same way as I would any other peer-reviewed science results covering the topic of violence in relation to a diagnosis / label / condition: cautiously and minus the need for sweeping generalisations (see here), but without shying away from potentially important findings.

Roché et al discuss results based on their analysis of "intake records of 63,572 patients diagnosed with SMIs [serious mental illness] (i.e., schizoaffective disorder, schizophrenia, bipolar disorder, and unipolar depression), substance use disorders, and non-SMI psychiatric disorders" in relation to the risk of violent ideation and behavior (VIB). As well as looking at the frequency of VIB among their cohort, they also looked for other variables outside of a diagnosis of SMI that may impact on VIB.

Results: "patients with SMI conditions had higher rates of VIB than both patients with non-SMI psychopathology and those with substance use disorders only." No, this does not make for great PR for SMIs but is a reality of their observations. Further: "patients with SMI and comorbid substance use pathology were responsible for the majority of VIB within each SMI condition." This equation - SMI plus substance abuse equals greater risk of violence - is something that is becoming rather important based on the peer-reviewed science literature. It follows other independent findings [2] too and might even link into other areas.

Appreciating that those diagnosed with a SMI are also at greater risk of being a victim of crime (see here) including crime with a violent element attached to it, there are some important lessons to be learned from the Roché data. Not least is the potential focus on reducing comorbid substance abuse in the context of a diagnosis of serious mental illness so as to potentially modify the heightened risk of VIB and also, other less than desirable outcomes [3]. This is not something that can be done easily (see here) but does not mean it cannot be attempted at all.

I might also add that violence, as and when it does occur in the context of SMI, is likely to be related to other social and situational factors as well as being influenced by something like substance abuse (disorder). Indeed, in the context that various aspects of life can very much be *altered* by the experience of an SMI (diet, physical activity, etc) I'm minded to direct your attention to other variables potentially important to VIB such as nutritional factors for example (see here and see here). Science might also perhaps look to other diagnoses that potentially complicate the clinical picture in SMI as perhaps also exerting any effect on the risk of VIB (see here) and the [developmental] importance of transitioning risk from one label to another (see here) again, minus any sweeping generalisations. Finally, and minus passing the buck, the findings reported by Patel and colleagues [4] further complicate the clinical picture...

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[1] Roché MW. et al. Prevalence and Risk of Violent Ideation and Behavior in Serious Mental Illnesses: An Analysis of 63,572 Patient Records. J Interpers Violence. 2018 Mar 1:886260518759976.

[2] Fazel S. et al. Schizophrenia, substance abuse, and violent crime. JAMA. 2009 May 20;301(19):2016-23.

[3] Skalisky J. et al. Prevalence and Correlates of Cannabis Use in Outpatients with Serious Mental Illness Receiving Treatment for Alcohol Use Disorders. Cannabis Cannabinoid Res. 2017 Jun 1;2(1):133-138.

[4] Patel RS. et al. Is Cannabis Use Associated With the Worst Inpatient Outcomes in Attention Deficit Hyperactivity Disorder Adolescents? Cureus. 2018 Jan 7;10(1):e2033.

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Autism, mental health and 'sexual and gender minority' status

The findings reported by Rita George & Mark Stokes [1] piqued my interest recently, and their conclusion that various mental health issues over-represented in autism (see here and see here for examples) might not be just solely connected to the presence of a diagnosis of autism.

Yes, I know this sounds like common sense (see here), but as I've come to realise in relation to lots of diagnostic labels, assumptions very often precede actual (peer-reviewed) evidence.

Based on responses on the DASS-21 (which is fast becoming the go-to measure for the self-report of things like stress, depression and anxiety-like behaviours with autism in mind [2]), researchers compared depression, anxiety and stress scores for over 300 people with autism compared with over 250 "typically-developing individuals." Alongside, membership of a minority grouping in terms of sex and gender, e.g. non-heterosexual, was also thrown into the statistical mix. Results suggested that along with differences in DASS scores being more generally observed between the groups: "As membership to a minority group became more restrictive, mental health symptoms worsened... suggesting stressors added."

Such an investigation follows a scheme of work by this authorship group who, quite recently, also reported that within the same participant group(?), some 70% of those with autism "reported being non-heterosexual" [3]. I was quite taken aback by the high rate of non-heterosexuality reported in this study, bearing in mind that this data was derived from an on-line sample and may not be entirely representative of the full autism spectrum as a function of the use of self-report for example (see here). I might also add that focusing just on autism to the exclusion of some other potentially important comorbid labels [4] could be something that needs to be looked at in future investigations in light of other results on gender variance for example [5].

Minus however, any 'I told you so' sentiments, I have previously mentioned about how gender and sexual identity in relation to autism is both a research-rising area and can often have some quite profound implications for the person concerned (see here). We can um-and-ah about whether there is a 'connection' between autistic traits and sexual orientation (see here) or whether something like gender dysphoria is more or less likely in the context of autism (see here), but there is no denying that gender and sexual identity are variables that can and do potentially impact on mental health. In support of the George/Stokes findings, one need only look to the non-autistic focused research literature to see how various aspects of health-related quality of life for example, are seemingly influenced by variables such as sexual orientation [6] and how this potentially plays out over both childhood and into adulthood [7].

So when George & Stokes talk about: "Specialized care is recommended for this vulnerable cohort" there could be some pretty profound implications associated with timely and appropriate education and support taking into account sexual and gender identity in the context of autism...

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[1] George R. & Stokes MA. A Quantitative Analysis of Mental Health Among Sexual and Gender Minority Groups in ASD. J Autism Dev Disord. 2018 Jan 23.

[2] Nah YH. et al. Brief Report: Screening Adults with Autism Spectrum Disorder for Anxiety and Depression. J Autism Dev Disord. 2017 Dec 2.

[3] George R. & Stokes MA. Sexual Orientation in Autism Spectrum Disorder. Autism Res. 2018 Jan;11(1):133-141.

[4] May T. et al. Trends in the Overlap of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: Prevalence, Clinical Management, Language and Genetics. Current Developmental Disorders Reports. 2018. Jan 17.

[5] Strang JF. et al. Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Arch Sex Behav. 2014 Nov;43(8):1525-33.

[6] Marti-Pastor M. et al. Health-related quality of life inequalities by sexual orientation: Results from the Barcelona Health Interview Survey. PLoS One. 2018 Jan 24;13(1):e0191334.

[7] Petterson LJ. et al. Sex, Sexual Orientation, Gender Atypicality, and Indicators of Depression and Anxiety in Childhood and Adulthood. Arch Sex Behav. 2017 Jul;46(5):1383-1392.

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