Edentulousness (no natural teeth) and intellectual (learning) disability

Edentulousness: "The property of being edentulous; lack of teeth."

I was brought to talk about edentulousness on this blog as a result of the findings reported by Kinnear and colleagues [1] and their observations suggesting that: "Adults with IDs [intellectual disability] have a high prevalence of edentulousness."

Based on data from an "adult cohort with IDs residing in Greater Glasgow and Clyde, Scotland", researchers compared rates of edentulousness in their 560 adults with ID with (asymptomatic) population data (n=2547) on this issue. The results were pretty worrying as "rates of edentulousness were consistently higher in the ID cohort" across various different age ranges: "9% vs. 1% aged 25-34 years; 22% vs. 2% aged 35-44 years; 39% vs. 7% aged 45-54 years; 41% vs. 18% aged 55-64 years; and 76% vs. 34% aged 65-74 years." Researchers also concluded that edentulousness was quite a bit more likely in those described as having "severe IDs".

When it came to other factors outside of ID severity that might be related to edentulousness, a few issues were observed such as "taking antipsychotics" and "living in the most deprived neighbourhoods." Other variables such as the presence of a diagnosis of autism and "problem behaviours" were are told, did not reach the thresholds for 'sufficient evidence'.

Why is all this important you might ask? Well, for lots of reasons, not least that the Kinnear results potentially highlight the important (continuing) issue of health inequality in relation to learning (intellectual) disability (see here). Indeed, one of my first thoughts when I read the Kinnear results is that quite a few of those news reports about people with learning disabilities that have been seen down the years, show people missing teeth. I can't help thinking what such pictures do for a person and their self-esteem. Even worse, such findings further highlight how for some people with ID, the state of edentulousness is literally forced on them (see here) with little or no regard for the views of them or indeed their loved ones.

Such findings do suggest that organisations need to try harder when it comes to improving the oral health of those with ID. I'm minded to suggest that those people who have a history of poor diet, those who are prone to pica (eating non-edible objects), those who have bruxism (teeth grinding) and/or those who have a history of persistent vomiting should perhaps be afforded particular dental attention. The link with antipsychotic use? Well, I also think more needs to be done in this area. There is already some data on medicines affecting oral hygiene [2] among which antipsychotics seem to have a place. The hows-and-whys need a little more understanding outside of the suggestion of xerostomia (dry mouth). Despite also the lack of any significant link between 'problem behaviours' and edentulousness identified by Kinnear, I'd still like to see whether certain 'challenging behaviours' might be contributory to such a state (see here) and perhaps one reason why antipsychotics were prescribed in the first place?

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[1] Kinnear D. et al. Prevalence of factors associated with edentulousness (no natural teeth) in adults with intellectual disabilities. J Intellect Disabil Res. 2019 May 6.

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Paediatric congenital heart disease and autism risk (again)

"Risk of autism spectrum disorder screening status in children with congenital heart defects was higher than expected from population rates."

So said the findings reported by Jessica Bean Jaworski and colleagues [1] who set about "to assess the rates of autism spectrum disorders in a large sample of children with a history of congenital heart defects and to assess medical, behavioral, and individual factors that may be associated with the risk of autism spectrum disorders." Covering a topic that has graced this blog before (see here) the results reiterate that there may be many roads to, and correlates associated with, a diagnosis of autism spectrum disorder (ASD). Congenital heart defects by the way, is a blanket term covering various issues related to the structure and function of the heart that are present at birth.

Based on the examination of nearly 200 children "with a history of congenital heart defects" the data produced invites quite a bit more investigation on (i) the prevalence of autism/ASD in cases of congenital heart defects and (ii) the mechanism of how said heart issues might *link* to the presentation of autism. On that last point, my previous post on this topic (see here) provided a few research ideas. Given also that congenital heart defects do require care across the lifespan, I assume that such care will also be similarly afforded to those diagnosed with a congenital heart defect and autism, save any further health inequalities appearing.

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[1] Bean Jaworski JL. et al. Rates of autism and potential risk factors in children with congenital heart defects. Congenit Heart Dis. 2017 Mar 16.

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Bean Jaworski JL, Flynn T, Burnham N, Chittams JL, Sammarco T, Gerdes M, Bernbaum JC, Clancy RR, Solot CB, Zackai EH, McDonald-McGinn DM, & Gaynor JW (2017). Rates of autism and potential risk factors in children with congenital heart defects. Congenital heart disease PMID: 28299880

Physical activity levels and autism (again)

"Adolescents with ASD [autism spectrum disorder] spent less time in MVPA [moderate and vigorous physical activity] compared to TD [typically developing] adolescents (29 min/day vs. 50 min/day, p < 0.001) and fewer met the Physical Activity Guidelines for Americans (14 vs. 29%, p > 0.05)."

So said the study results published by Heidi Stanish and colleagues [1] adding yet more to another growth autism research area - physical activity and exercise - a topic also fast becoming a repetitive blogging issue for me.

It's not necessarily new news that physical activity and exercise levels are not what they could or should be for many people on the autism spectrum (see here) but rather that the use of objective measures such as accelerometers for data collection are starting to put some scientific flesh on previous 'what exercise did you do' type questionnaire studies. And the trend that is being revealed really is quite a disturbing one if one assumes that physical activity is a significant gateway to rude health and well-being, particularly in the context of ever-increasing waistlines and onward longitudinal effects. I might even point you in the direction of some new research hinting that MVPA in childhood might predict "fewer symptoms of major depressive disorders" later on; something that could be particularly relevant to autism in light of those over-represented comorbidities that I keep going on about (see here).

Stanish et al have been mentioned before on this blog in the context of physical activity / exercise and autism and particularly the ways that said activity could be made more attractive to teens diagnosed on the autism spectrum (see here). Small steps and finding the right activity were some of the routes offered in that previous paper [2].

Before I go I do want to briefly mention one point raised in the latest Stanish paper: "Walking/hiking and active video gaming were among the top activities for both groups." Both groups refers to adolescents with autism (n=35) and those described as typically developing (n=60) who were included for study (although much like the term 'neurotypical' I'm still at a loss as to the precise meaning of 'typically developing'). Walking/hiking... great, really worthwhile encouraging (see here) including exposing people to the great outdoors and that yellow thing usually high in the sky. 'Active videogaming' is something I'm a little less sure of at the moment and indeed, some people have talked about such 'exergaming' as being a poor substitute for the real thing [3]. I don't doubt that one can build up a sweat on something like those new-fangled 'watch my movement' games consoles that abound these days, but might such exergaming just further feed into the 'screen time' narrative that typically accompanies sedentary behaviours?

And of the multiple correlates potentially attached to low levels of physical activity, one might also count bone health [4] among them as being relevant to at least some autism...

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[1] Stanish HI. et al. Physical Activity Levels, Frequency, and Type Among Adolescents with and Without Autism Spectrum Disorder. J Autism Dev Disorders. 2017. Jan 9.

[2] Stanish H. et al. Enjoyment, Barriers, and Beliefs About Physical Activity in Adolescents With and Without Autism Spectrum Disorder. Adapt Phys Activ Q. 2015 Oct;32(4):302-17.

[3] Daley AJ. Can Exergaming Contribute to Improving Physical Activity Levels and Health Outcomes in Children? Pediatrics. 2009; 124: 2.

[4] Neumeyer AM. et al. Bone microarchitecture in adolescent boys with autism spectrum disorder. Bone. 2017 Jan 11. pii: S8756-3282(17)30009-1.

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Stanish, H., Curtin, C., Must, A., Phillips, S., Maslin, M., & Bandini, L. (2017). Physical Activity Levels, Frequency, and Type Among Adolescents with and Without Autism Spectrum Disorder Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-016-3001-4

"A Putative Blood-Based Biomarker for Autism Spectrum Disorder-Associated Ileocolitis"

Contrary to Murphy's Law - 'never repeat a successful experiment' - replication or reproducibility is a cornerstone of good science. Today, I'm blogging about a piece of research that aimed to do just that as per the findings reported by Stephen Walker and colleagues [1] (open-access).

The title of this post has been borrowed from the title of the Walker paper to illustrate how moving on from the quite widely known 'fact' that functional gastrointestinal (GI) symptoms are over-represented when it comes to the label of autism (see here for example) so further research focus is required on more pathological bowel conditions potentially linked to autism too (see here). Yes, I know this potentially takes us into some uncomfortable territory but for those with autism suffering with various bowel issues (and I do mean suffering) this marks some important science for them and their families onward to the resolution of any further health inequalities.

The latest Walker paper follows on from their original findings [2] which have been previously covered on this blog (see here) observing that: "ASDGI children have a gastrointestinal mucosal molecular profile that overlaps significantly with known inflammatory bowel disease (IBD), yet has distinctive features that further supports the presence of an ASD-associated IBD variant, or, alternatively, a prodromal phase of typical inflammatory bowel disease." ASDGI by the way, referred to their small grouping of "twenty five consecutive ASDGI cases (6 autism; 19 autism spectrum disorder) with histopathologic findings of ileitis, colitis, or both."

This latest time around authors report on the extending of their 'initial findings' in "an additional case/control cohort." Further they "report a gene expression profile in peripheral blood that may reflect the presence of ASD-associated ileocolitis and provide a putative surrogate biomarker that, upon validation, would be of significant clinical relevance." Potentially, big words.

The paper is open-access but here are a few choice details:

• Biopsy samples - "a specimen from each of seven anatomic locations (from the terminal ileum to rectum)" - and blood samples were provided by 21 participants (patients) diagnosed with an autism spectrum disorder (ASD). All presented with gastrointestinal (GI) symptoms and all had "a history of normal development for at least 12 months followed by developmental regression and onset of gastrointestinal symptoms." All also had "histologically-confirmed ileitis, colitis, or both in at least one of seven collected and archived colonic biopsies." 
• A control group of 21 'typically-developing' children "without ASD who had gastrointestinal symptoms... but no identifiable histologic inflammation on any biopsies in either the ileum or colon" were also included for analysis.
• Part 1 of the study "compared whole genome gene expression profiles of inflamed ASD GI mucosal tissue (ASDIC+) to non-inflamed TD mucosal tissue (TDIC−) in biopsies from both the terminal ileum and colon." This is pretty much what was done by the authors during their first research voyage in this area. Part 2 was more novel insofar as blood gene expression profiles were compared between the groups. It's also important to note that: "blood was obtained from the same patients, and at the same time, as their respective mucosal tissue samples."
• Results: applying a statistical technique called Principal Component Analysis (PCA) looking at gene expression in those mucosal (bowel) samples, authors were again able to say that there were differences between inflamed and non-inflamed samples/groups. They also observed some potentially important differences in those blood samples too: "Nine of these DETs [gene transcripts that are differentially-expressed] were also differentially expressed in blood in our most recent cohort." You might ask what does this actually tell us about the autism+GI group? Well, nothing and something, insofar as it is not really being ethical to start taking bowel biopsies from children with autism without any indication to do so, which means that comparisons between non-GI and GI+ children with autism were not possible. The data do however suggest that a "putative peripheral marker could provide a proxy for gastrointestinal inflammation and also provide functional insights."
• Insofar as the details of what genes were being differentially expressed in ASDIC+ vs. TDIC- samples and how these overlapped with the previous study from the authors, there were some interesting candidates including "a key mitochondrial folate pathway gene, MTHFD2 (methylenetetrahydrofolate dehydrogenase (NADP + dependent) 2, methenyltetrahydrofolate cyclohydrolase)" hinting at an effect beyond just immune function and inflammation/inflammatory signalling. Authors modelled various combinations of these genes expressed (or not) to try and come up with some preliminary Receiver Operating Characteristic (ROC) curve analysis. Regular readers of this blog will probably have heard me talk about ROC analyses before (see here for example) with regards to the search for potential classifiers or biomarker profiles associated with autism. Bearing in mind the small participant numbers included in this study and the final figures arrived at, I'd suggest that quite a bit more work is required before anyone takes the reported findings as gospel just yet. But they are interesting...

So, there you have it. This is important work for two reasons: (i) more pathological bowel states can and do present alongside autism [3] (the diagnosis of autism is seemingly protective of very little as science is learning) and (ii) with the strong requirement for further investigations in this area, science is seemingly starting on a path to potentially identifying blood-based 'biomarkers' possibly useful in identifying those who might benefit from further screening for such bowel issues.

Given the history and debate in the area of bowel disease accompanying some autism, I'm not expecting giant fanfares to greet these results nor any big rush to try and prove/disprove these latest findings. That is an unfortunate truth and in the end, it is the children/adults with autism and significant GI issues who lose out as a consequence. The fact that this and the previous work by the authors is peer-reviewed science and not just speculation however will I think eventually be important, as talk about medical comorbidity accompanying autism continues at a pace [4] (see here too) and further moves towards 'what can we do about such issues?' eventually start to come to the forefront.

And just before I go, there may also be other research uses for biopsies as and when they have to be taken from children/adults under clinical investigation [5]...

To close, I note there is an election across the Pond. With all the nastiness that has followed the campaign, surely there's an easier way to pick the Leader of the Free World...

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[1] Walker SJ. et al. A Putative Blood-Based Biomarker for Autism Spectrum Disorder-Associated Ileocolitis. Sci Rep. 2016 Oct 21;6:35820.

[2] Walker SJ. et al. Identification of unique gene expression profile in children with regressive autism spectrum disorder (ASD) and ileocolitis. PLoS One. 2013;8(3):e58058.

[3] Doshi-Velez F. et al. Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders. Inflamm Bowel Dis. 2015 Oct;21(10):2281-8.

[4] Vohra R. et al. Comorbidity prevalence, healthcare utilization, and expenditures of Medicaid enrolled adults with autism spectrum disorders. Autism. 2016. Oct 20.

[5] Kushak RI. et al. Analysis of the Duodenal Microbiome in Autistic Individuals: Association with Carbohydrate Digestion. J Pediatr Gastroenterol Nutr. 2016 Nov 2.

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Walker SJ, Beavers DP, Fortunato J, & Krigsman A (2016). A Putative Blood-Based Biomarker for Autism Spectrum Disorder-Associated Ileocolitis. Scientific reports, 6 PMID: 27767057

Time to screen for vitamin D and calcium levels in autism

"The data highlight a gap in calcium and vitamin D supplement prescribing practices among providers caring for children with ASD [autism spectrum disorder] as well as a gap in the practice of checking 25(OH)D levels."

So said research published by Shylaja Srinivasan and colleagues [1] (open-access) with findings tied into an important issue in autism research and clinical practice: potential inequalities when it comes to the provision of suitable healthcare and accessing appropriate screening measures.

Looking at an area of increasing interest when it comes to autism - the sunshine vitamin/hormone that is vitamin D - Srinivasan et al reported that: "Fifty-two percent of the children on the GFCF [gluten-free, casein-free] diet were taking vitamin D supplementation in comparison to 18% of those in the non-GFCF group." Further: "Twenty-four percent of children in the GFCF group had a documented 25(OH)D level compared to none in the non-GFCF group."

If there are any primary messages attached to my musings on this blog, one of them is the growing emphasis on how receipt of a diagnosis of autism or ASD seems to put many people at some enhanced risk of health inequality. I'm not just talking about the idea that autism rarely appears in some sort of diagnostic vacuum (see here) but also that receipt of a diagnosis should not represent the end of screening and/or assessment processes but rather the beginning, and that screening should focus on quite a few things outside of just behaviour. Autisms people, autisms.

Accepting that not everyone might be as enthusiastic as I am about a possible link between vitamin D and autism, Srinivasan and colleagues make some important points about why screening for vitamin D and calcium might be particularly important when it comes to autism. So: "Our results also indicate that only a small proportion of children on the GFCF diet and none on the non-GFCF diet had vitamin D levels checked, even when on multiple medications that could potentially affect vitamin D metabolism and bone health." The types of medication that they are talking about include "antiepileptics, antidepressants, and antipsychotic medications" that "also have influences on bone indices and vitamin D metabolism" some of which have been mentioned previously on this blog (see here).

Insofar as the idea that initiation of a GFCF diet in cases of autism might 'trigger' screening for levels of important nutrients such as calcium and vitamin D in light of removal of dairy products for example, I'm kinda happy to see some data on this. Acknowledging the idea that a GFCF diet for [some] autism (see here) furrows brows in some quarters, I've talked before about how there may be quite a few positives to such intervention insofar as both dietary quality (see here) and where required, the use of supplementary nutrients (see here). This set against a backdrop where issues with food are quite frequently reported alongside autism (see here) and diseases of past years such as scurvy might be making something of a return with the label in mind (see here).

There are still conversations to have about vitamin D and autism and the GFCF diet and autism, of that there is no doubt (see here). The idea however that important health inequalities might follow a diagnosis of autism is something however that cannot be readily ignored. If I've said it once, I've said it a million times: screen. don't assume. screen.

And whilst not trying to make too much of the news that certain groups of people in particular might benefit from vitamin D supplementation, I am inclined to follow the advice of experts when it comes to the extra-skeletal benefits that vitamin D might confer...

To close: it begins... Rogue One.

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[1] Srinivasan S. et al. Calcium and Vitamin D Supplement Prescribing Practices among Providers Caring for Children with Autism Spectrum Disorders: Are We Addressing Bone Health? Autism Research and Treatment. 2016; 6763205.

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Srinivasan, S., O’Rourke, J., Bersche Golas, S., Neumeyer, A., & Misra, M. (2016). Calcium and Vitamin D Supplement Prescribing Practices among Providers Caring for Children with Autism Spectrum Disorders: Are We Addressing Bone Health? Autism Research and Treatment, 2016, 1-6 DOI: 10.1155/2016/6763205

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

Healthcare experiences and autism

In today's brief post I want to highlight the important findings reported by Christina Nicolaidis and colleagues [1] who suggested that quite a bit more could be done to improve the success of "healthcare interactions" when it comes to the autism spectrum.

Based on the experiences of 39 adults with autism and "16 people who had experience supporting autistic adults in healthcare settings" researchers came up with a few "patient- and provider-level factors" that might impact on said healthcare interactions and thus the quality of service received by this group. Quite small changes such as improving healthcare provider's knowledge of autism - specifically adult autism - including a realisation that factors such as "verbal communication skills, sensory sensitivities, [and] challenges with body awareness" might impact on the quality of healthcare received are detailed. The idea that 'if you've met one person with autism, you've met one person with autism' might also be a useful phrase for healthcare providers to keep in mind given the significant heterogeneity and heightened risk of comorbidity normally attached to the 'autisms' (plural) label.

I've always been rather interested in the disparities in healthcare quality and provision attached to behavioural and/or psychiatric labels derived from books such as ICD and DSM. Having previously covered some of the extremes of "catastrophic illnesses [that] were misdiagnosed due, at least partially, to their autism" (see here) on this blog, I have a flavour for just how bad things can get when healthcare provider knowledge of autism is poor and phrases like 'it's just part of their autism' are used willy-nilly.

"Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination." I don't think many people would disagree with the conclusions from Nicolaidis et al although the precise ways and means that such changes can be practically made still requires some flesh on the bones. As per another article from this research group [2] "the recognition of associated conditions" potentially comorbid to a diagnosis on the autism spectrum might also help healthcare providers plan for what they might expect, bearing in mind the considerable number of conditions/labels that might follow such a diagnosis (see here) and the idea that a label of autism is seemingly protective of nothing in healthcare and other terms [3]. But let's start with the simple things...

Music: The White Stripes - Fell In Love With A Girl (video pre-Lego movie). And assuming you are 'falling in love with a girl [or boy]' you might want to see how she/he might see you with the new Microsoft 'How old do I look' tool. After analysing a few mugshots of mine I'm not afraid to say that I might be visiting Boots the Chemists quite soon...

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[1] Nicolaidis C. et al. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism. 2015. 16 April.

[2] Nicolaidis C. et al. Primary care for adults on the autism spectrum. Med Clin North Am. 2014 Sep;98(5):1169-91.

[3] Croen LA. et al. The health status of adults on the autism spectrum. Autism. 2015 Apr 24. pii: 1362361315577517.

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Nicolaidis, C., Raymaker, D., Ashkenazy, E., McDonald, K., Dern, S., Baggs, A., Kapp, S., Weiner, M., & Boisclair, W. (2015). "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum Autism DOI: 10.1177/1362361315576221

Higher cancer mortality rates associated with mental illness

The findings reported by Steve Kisely and colleagues [1] were of some interest recently and their assertion that despite cancer incidence being "the same as the general population for most psychiatric disorders" or even slightly reduced when a diagnosis of schizophrenia was for example received, mortality due to cancer was "increased in psychiatric patients."

Such findings were based on their examination of: "Mental health records [that] were linked with cancer registrations and death records from 2002 to 2007." It follows other work from these authors in this area including that looking at the gap in life expectancy 'from preventable physical illness in psychiatric patients' [2].

Head-scratching (no, not for that reason) aside as to why cancer should be more deadly for those diagnosed with a psychiatric condition, the authors suggest that lifestyle factors such as alcohol or tobacco use probably wouldn't account for the quandary presented. One suggestion however - "inequity in access to specialist procedures" - does invite further investigation on the back of what has been previously reported in the area of psychiatric diagnosis and health inequality (see here for example).

Indeed, 'disparities in cancer-related healthcare provision' was also one of the explanations put forward by one researcher who replied to my tweet about the Kisely paper (and he should know) complete with reference to research backing up this claim [3]. The Mitchell paper found that: "Rates of mammography screening are lower in women with mental illness, particularly women with SMI [severe mental illness]." Whilst this only covers one type of cancer and one type of screening method, the idea that cancer screening and treatment resources may be 'failing' those with a psychiatric diagnosis is an important one also covered by other researchers [4]. Indeed, Martens et al suggested that "good continuity of care by primary care physicians" may mitigate the issues like screening uptake and the idea of a more 'joined-up' service delivery between psychiatry and other branches of clinical care.

Of the various messages to come from the Kisely findings, I'd like to think that a primary one is that of psychiatric diagnoses not appearing in some sort of clinical vacuum with regards to other symptoms and conditions being present and what effect they can have on quality of life. As per my ramblings about autism and the wide spectrum of comorbidities that can and do impact on health and quality of life, we need to be mindful of how presentation of behavioural / psychiatric symptoms can impact on the presentation and treatment of other conditions, many of which are perfectly treatable / manageable in modern medicine.

But the question is not completely answered [5]... and one wonders whether the findings from Minna Torniainen and colleagues [6] on a potential 'protective effect' from antipsychotics on early mortality in cases of schizophrenia might also bring some potential explanation(s) to the table?

To close: The Force Awakens trailer number 2.

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[1] Kisely S. et al. Why do psychiatric patients have higher cancer mortality rates when cancer incidence is the same or lower? Aust N Z J Psychiatry. 2015 Mar 31. pii: 0004867415577979.

[2] Lawrence D. et al. The gap in life expectancy from preventable physical illness in psychiatric patients in Western Australia: retrospective analysis of population based registers. BMJ. 2013 May 21;346:f2539.

[3] Mitchell AJ. et al. Breast cancer screening in women with mental illness: comparative meta-analysis of mammography uptake. Br J Psychiatry. 2014 Dec;205(6):428-35.

[4] Martens PJ. et al. Are cervical cancer screening rates different for women with schizophrenia? A Manitoba population-based study. Schizophr Res. 2009 Aug;113(1):101-6.

[5] Chang CK. et al. A cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival. BMJ Open. 2014 Jan 29;4(1):e004295.

[6] Torniainen M. et al. Antipsychotic Treatment and Mortality in Schizophrenia. Schizophr Bull. 2015; 41: 656-663.

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Kisely S, Forsyth S, & Lawrence D (2015). Why do psychiatric patients have higher cancer mortality rates when cancer incidence is the same or lower? The Australian and New Zealand journal of psychiatry PMID: 25829481