Showing posts with label social. Show all posts
Showing posts with label social. Show all posts

Wednesday, 12 December 2018

Elevated zonulin levels in ADHD = more hyperactivity and "impairment of social functioning"

"Children with ADHD [attention-deficit hyperactivity disorder] had higher serum zonulin levels and were more impaired in social functioning compared to controls."

So said the findings reported by Gonca Özyurt and colleagues [1] exploring a topic quite close to my research heart, zonulin and the assumption that "the level of zonulin increases when intestinal permeability is impaired."

Before heading further into the Özyurt findings, I'll perhaps refer you to some of my previous musings on the topic of zonulin (see here) and the hows-and-whys of this potentially important compound. It's rooted in the idea that intestinal permeability is perhaps rather more than it should be in some people with some labels (see here) and this *could* have some important implications for biochemistry and beyond; particularly the notion of a 'gut-brain' relationship (see here).

Özyurt et al examined zonulin in the context of attention deficit hyperactivity disorder (ADHD) based on the idea that: "Zonulin has been shown to be associated with social impairment in children with autism spectrum disorder" but such functions (and other attention-related behaviours) have not yet been looked at with ADHD in mind. Based on the examination of serum zonulin levels in some 40 kids diagnosed with ADHD and a similar number of not-ADHD controls, analysed via "enzyme-linked immunosorbent assay", researchers reported that: "Children with ADHD had higher serum zonulin levels and were more impaired in social functioning compared to controls." Also: "The level of zonulin was independently predicted with hyperactivity symptoms and SRS [Social Responsiveness Scale] scores in regression analysis."

Bearing in mind that the Özyurt study was a fairly small scale study that utilised a methodology that has its critics (see here), I'm cautiously interested in the presented findings. I don't want to say anything further about this at the present time; aside that is, from the need for quite a bit more data on this potentially interesting relationship...

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[1] Özyurt G. et al. Increased zonulin is associated with hyperactivity and social dysfunctions in children with attention deficit hyperactivity disorder. Compr Psychiatry. 2018 Oct 29;87:138-142.

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Wednesday, 10 October 2018

"the friendships and social experiences of autistic girls are similar to those of neurotypical girls"

The quote heading this post - "the friendships and social experiences of autistic girls are similar to those of neurotypical girls" - comes from the findings reported by Felicity Sedgewick and colleagues [1] (open-access available here) continuing a growing research theme looking at the presentation of autism across the sexes/genders. The results however perhaps challenge the idea that "being autistic ‘overrides’ being female in some way."

OK, first things first, by mentioning the word 'neurotypical' the authors refer to a not-autistic control group. As I've said on many, many occasions, the word 'neurotypical' from a research/clinical point of view is however meaningless (see here): there is no way for a living brain, with all its complex structures, connections and functions, some of which are changing second to second, to ever be described as 'typical'. And autism research in particular really shouldn't be using such a misnomer, no matter how [social media] fashionable it might seem.

Rant over. Despite using the term, the Sedgewick paper covers an important real-world part of the whole 'gender differences in autism' area looking at "gender differences in the friendships and conflict experiences of autistic girls and boys relative to their neurotypical [non-autistic] peers." Over 100 adolescents (aged 11-18 years) were included for study; about half diagnosed with autism with an "independent clinical diagnosis of an autism spectrum condition." Said autism diagnoses were also complemented by assessment via the gold-standard ADOS which actually revealed that: "Two boys and four girls failed to meet the ADOS-2 threshold (score = 7) for autism." Data from these children were still included in the study given the "pre-existing clinical diagnosis" and other supporting information. I'm wondering however if perhaps some of these children were examples that an autism diagnosis (or reaching the cut-off points on one of the gold standard autism assessment instruments) is not necessarily for life (see here)? Further, all participants "completed the Friendship Qualities Scale, the Revised Peer Experiences Questionnaire and were interviewed about their friendships" and results were analysed...

Results: "Autistic and non-autistic girls’ conflict and friendships were more like each other than autistic and non-autistic boys, and vice versa." The authors frame this in the context that their findings "provide compelling support for the possibility that gender may be more important than diagnosis in determining young autistic people’s social experiences." That's not to say that there weren't some important group differences in relation to social challenges, conflict and conflict resolution - "autistic girls described an ‘all-or-nothing’ approach, either taking sole responsibility for what had happened... or ending the friendship entirely, seeing the other person as the wrong-doer..., or feeling it could not be resolved" - just that there was more to align girls than to divide them when it came to comparisons with non-autistic peers.

Authors also report results from their interviews with adolescents which again revealed that gender over a diagnosis of autism seemed to a key aspect. So: "Having a few good friends was key, with all girls talking about having a small number of close friends that they considered to be ‘best’ friends. These close friends were those who they spent the most time with and talked to most." Also: "Both autistic and neurotypical girls emphasised that friends supported them." And finally: "Both autistic and neurotypical girls alluded to wanting to fit in, but in different ways." It should also be noted that Sedgewick et al mention how 'camouflaging' (a term being increasingly used in autism circles) is not a specific strategy reserved for autism: "Few girls reporting having boyfriends, but most said people dated to fit in with the popular crowd. These behaviours could be seen as a form of ‘camouflaging’, as teenagers described seeking peer acceptance, even if they were not personally motivated to date."

As to the boys of this particular cohort, well again, there didn't appear to be any really prominent stand-out separation points between autism and not-autism. As the authors report: "autistic and non-autistic adolescent boys reported their friendship and conflict experiences as highly similar – activity-focused, practically supportive friendships combined with a laissez-faire attitude to conflict. The exception to this pattern was that neurotypical boys described more intimate friendship experiences than their autistic male counterparts."

Cumulatively the Sedgewick findings reinforce the idea that there may be some subtle but important differences between boys and girls, women and men diagnosed with autism (see here). In this light, the suggestion that "autistic girls (and possibly women) need different strategies and supports to understand and effectively navigate the social expectations placed upon them" is correct when compared to males diagnosed with autism. The results suggesting however, little significant differences in friendships and social experiences between autistic girls and non-autistic girls (and autistic boys and non-autistic boys) kinda grates against some of the narratives that have emerged in recent years. It implies that rather than viewing someone as an 'autistic girl' one should perhaps first focus on that person as a girl when it comes to social experiences and friendships rather than subscribing to the idea that autism is wholly 'behind' any issues as some 'identity' discussions have intimated. The findings also imply that camouflaging and masking are not necessarily exclusive features of autism but, perhaps in some contexts, are rather more representative of a general effect specifically across gender.

I would like to see a lot more research done in this area. I'd like to see more longitudinal work done looking at friendships and social experiences into adulthood with autism in mind, where other environments replace the school playground (including the online and social media environments). I'd like to know about how friendships develop, persist or 'fall to one side' and whether other 'comorbidity' (see here), that more likely than not will 'follow' a diagnosis of autism (see here), play any role in such social experiences. I'd also like to see further work on societal inclusion (see here) in the context of the Sedgewick research too. There is a scheme of work to do.

And let us also not forget that learning the intricacies of things like friendships and social experiences or challenges such as conflict are also influenced by other important variables, such as a role for siblings [2] (for better or for worse)...

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[1] Sedgewick F. et al. 'It's different for girls': Gender differences in the friendships and conflict of autistic and neurotypical adolescents. Autism. 2018 Oct 3:1362361318794930.

[2] Ben-Itzchak E. et al. Having Siblings is Associated with Better Social Functioning in Autism Spectrum Disorder. J Abnorm Child Psychol. 2018 Oct 3.

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Friday, 28 September 2018

Parental separation in the context of offspring autism or ADHD

It's been quite a few years since I've approached the topic of parental separation/divorce in the context of an offspring diagnosis of autism or attention-deficit hyperactivity disorder (ADHD) (see here). The net result of that discussion was that the (peer-reviewed) evidence base, at the time, was a little mixed when it came to whether parental separation was more or less likely in the context of offspring autism for example. Indeed, whilst family parenting pressures no doubt contribute to parental relationship 'anxiety', there are a myriad of other factors to take into consideration too...

Fast forward to recent times and the study results published by Sabrina Just Kousgaard and colleagues [1] make for the blogging fodder, with their conclusion that: "Parents of children diagnosed with ADHD or ASD [autism spectrum disorder] were more likely to separate than control parents."

From a cold, objective science view the Kousgaard study is a well-powered one, insofar as including "the parents of 12,916 children with ADHD, 7496 children with ASD and 18,423 controls." With those sorts of participant numbers, you probably won't be surprised to hear that the source country was Denmark and yet again, the use of one of those fabulous Scandinavian population registries. Indeed: "all children with ADHD or ASD born between 1990 and 1998 in Denmark" were studied and followed-up "until the child's 25th birthday, parental separation or December 31, 2015, whichever came first."

Authors acknowledge that although there was a higher rate of parental separation in those families with a child with autism or ADHD it wasn't as straight-forward as 'blaming' offspring diagnostic status or not. So: "Other factors associated with parental separation were parental imprisonment, parental psychopathology, low parental education level, low household income and living in a larger city." What this finding does is reiterate that family circumstances are universally 'weird and wonderful' and that just because there is a child or children in the family diagnosed with autism or ADHD (or both) does not mean that families are any more or less 'weird and wonderful'.

Then to the big questions: (i) why was the parental separation rate elevated when autism or ADHD is diagnosed in the family, and (ii) what can be done to help families 'stay together'? Well, without getting too high-and-mighty about this (acknowledging for example, that in some circumstances parental separation is actually a better option than a continued 'toxic' family environment) there are other clues in the research literature (see here).

So, first of all let's acknowledge that parenting is tough. That's a universal issue, irrespective of whether children are diagnosed with this, that or t'other. Having a child with a developmental disorder/label/diagnosis does seem to make things tougher insofar as the additional 'things' that need to be catered for, and the almost constant battles that follow trying to get those additional 'things' catered for. I say this not only from the perspective of the parent-child relationship but also the additional strains related to schooling and education and navigating often complicated social welfare systems for example. It's little wonder that some parents voice sentiments like 'why I can never die' in this context (see here). The research literature is also pretty much unanimous that quality of life for parents with a child with a developmental diagnosis is reduced compared with families without that diagnosis (see here). This also highlights how such pressures take their toll both psychologically and physically. There is no malice intended in that last sentence and no blame to be apportioned; I'm just guided by what the research in this area is telling us.

From the perspective of parents and their relationship with each other, it's not difficult to see how diverting energy into a family and their welfare often means diverting energy away from each other. The words 'emotional roller-coaster' have probably been used more than once to describe parenting a child with a behavioural and/or developmental diagnosis, and minus any psychobabble, such a roller-coaster can be emotionally draining. Yes, there are ups, but also there are downs; and in the context that various types of 'energy' (psychological and physical) are often finite in amount, so when such energies and time are focused on a child or children, there is logically, less for the other significant partner. Simple physics. Throw in the dwindling resources devoted to something like respite care for example (see here) and, well, you can see how this might quite severely affect the family dynamic. And results also tend to be cumulative...

I don't doubt that the issue of parental separation in the context of an offspring developmental and/or behavioural diagnosis is a complicated one. People split up all the time and, more often that not, it's more about the people (parents) themselves and their relationship than anything else. It would be foolish however to disregard data such as that generated by Kousgaard and colleagues showing how context and environment can also play a (variable) role when it comes to family break-up.

And on the back of the Kousgaard results, it's perhaps also time to start thinking about how parental break-up / separation might affect said offspring, particularly when a diagnosis of autism and/or ADHD is part of the clinical picture...

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[1] Kousgaard SJ. et al. The effect of having a child with ADHD or ASD on family separation. Soc Psychiatry Psychiatr Epidemiol. 2018 Aug 28.

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Monday, 20 August 2018

"Many people with autism could be homeless": conflating a diagnosis of autism with significant proxy-reported autistic traits

Here I go again. Taking issue with a media headline seemingly designed to grab attention and clicks: "Many people with autism could be homeless." And how said headline doesn't quite match up with the findings of a study upon which it is supposed to be based. It's not the first time this has happened (see here) and I very much doubt that it will be the last...

The study in question was the one published by Alasdair Churchard and colleagues [1] who attempted to fill "a gap in knowledge" concerning anecdotal evidence suggesting that "autistic people experience an elevated risk of homelessness." Researchers report results based on the "entire caseload ( N = 106) of a UK homeless outreach team" where data about autistic signs and symptoms were gathered from second-hand accounts (outreach workers). Authors reported that around 1 in 10 homeless people who underwent such proxy reporting *could* have fulfilled the diagnostic criteria for autism (one homeless person had a previously recorded diagnosis of autism apparently). Around a further 9% received a 'marginal' report insofar as autistic traits reported as being potentially present, but not necessarily to the extent of reaching clinical cut-off points. Researchers also summarised their results for the lay audience too (see here).

I'm pretty sure that you can see some of the 'incongruence' between the 'many people with autism could be homeless' headline and what the study actual did and reported on. I should also mention that although the DSM-5 was the diagnostic criteria relied on during the study, the authors highlight how this was administered via their own 'creation' - "a DSM-5 Autistic Traits in the Homeless Interview, which we call the DATHI." I don't want to poo-poo such an instrument and it's usefulness in the context of autism and homelessness, but I would like to see a lot more work on its reliability and validity in future studies before any big judgements (or even bigger headlines) are made. Even better would be talking to and directly screening homeless people for autism as a next research stage; to help for example, with important clinical decisions such as whether 'symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning' to them as per the DSM-5 guidance on receipt of an autism diagnosis. Obviously such direct questioning might not be easy. One also needs to consider whether the status of homelessness might itself contribute to such 'significant impairment in social and occupational' functioning? Also throw in the idea that autistic traits are not necessarily just indicative of autism (see here for one example) and you have a recipe for some significant misunderstanding around the risk of homelessness and a diagnosis of autism which could further stigmatise. Sweeping generalisations about autism have already done more than enough damage down the years, often built on fairly flimsy evidence.

I'm not saying that there is no possible connection between autism (or autistic traits) and the status of homelessness. On the contrary, when one looks as the some of the myriad of reasons why a person becomes homeless (see here), there's more than a pinch of overlap with issues faced by those with autism. I will particularly highlight vulnerability variables like unemployment, poverty, poor physical and mental health and a lack of social support as being some of the most obvious commonalities. There are probably others. And where autism is identified in the homeless, one would expect there to be some added incentive to ensure they are well and given the advice and help they want/need to take care of themselves. Bearing in mind that is, that we aren't really in any position to dictate anyone's living arrangements to them...

And there's one final point to consider: various studies for example, have already talked about 'homelessness and the mental health scandal' (see here) where, in some cases, 4 out of 5 homeless people have been identified as having a mental health issue. Symptoms and diagnoses such as schizophrenia/psychotic disorder, mood and anxiety disorders and intellectual disability have all been talked about in the context of homelessness [2] alongside issues like substance abuse. Some of these labels/diagnoses have even been identified as having a direct influence on rough sleeping behaviour by some people (see here). You could well say that many of those behavioural and psychiatric labels/diagnoses have also featured in autism (see here and see here and see here for examples) and that within the context of 'autism rarely appearing in a diagnostic vacuum', so autism might then show a link to homelessness. But I'd be very careful to just singling out autism in this context. Very, very, very careful indeed...

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[1] Churchard A. et al. The prevalence of autistic traits in a homeless population. Autism. 2018 Apr 1:1362361318768484.

[2] Nishio A. et al. Prevalence of Mental Illness, Cognitive Disability, and Their Overlap among the Homeless in Nagoya, Japan. PLoS One. 2015 Sep 17;10(9):e0138052.

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Saturday, 18 August 2018

Robot-mediated intervention and autism: fun but is it genersalisable?

For any Sci-Fi fan like me, mention of the word 'robot' conjures up various iconic images. Outside of the obvious, you have lovable robots like Twiki from the 1980s film/series that was Buck Rogers in the 25th Century. You also have the not-so-lovable robots like the Cylons from the original (and best) film/series that was Battlestar Galactica or even the spider robots designed (on screen) by a member of Kiss (yep, you heard me right). There are lots of examples.

These days the early dreams that robots might become an integral part of modern living have kinda come true albeit typically without the homicidal intent that their portrayal almost always seemed to imply. These days robots are our friends and helpers and are seemingly present in many areas of our modern infrastructure...

Set in this context the paper by Clare Huijnen and colleagues [1] provides a welcome analysis of the "roles, strengths and challenges of robot-mediated interventions using robot KASPAR [Kinesics and Synchronisation in Personal Assistant Robotics]  for children with autism spectrum disorder (ASD)." Authors concluded that there are some strengths to the application of robots to intervention with autism in mind, but also a few 'be careful' issues too...

Just in case you might not know, KASPAR is a social robot designed to "act as a social companion" to improve quality of life for children on the autism spectrum [2]. He/she/it is a little jarring to initially see (Leatherface sprung to mind) but works on the premise that as a robot he's 'safe and predictable' and because of that predictability, he might provide a good opportunity to help children on the spectrum learn certain skills, particularly around social interaction and communication. Noble sentiments.

Huijnen and colleagues decided to ask various care and education professionals - presumably with an interest in autism - about their views on KASPAR. Specifically: what role he/she/it might play, alongside the strengths and potential challenges around the use of such technology. The results were interesting insofar as positives like "personalisation possibilities, its playfulness... its neutral expression,... and repetitive application of actions." There's potentially lots that a robot could do that might be useful for some children, particularly children who crave predictability.

But just as interesting and important were the down-sides to such robot use, and in particular: "difficulties with generalisation or transfer and finally potential dependence on KASPAR." In other words, we're not yet living in the 'I, Robot' world where autonomous robots walk among us, and so one has to be quite careful that children aren't just being 'trained' to interact with KASPAR or similar robots rather than real people.

I've watched the emerging 'robots for autism' scene play out in the peer-reviewed science domain. I've watched various groups proudly showcase their technology and the promises that it holds. It's great to see this embracing of tech in many areas of autism research and practice but it has, I have to admit, always left me with niggling questions and doubts. Questions/doubts about whether this is just 'cosmetic' research or whether there is real potential for such technology...

I am particularly concerned that using robot-mediated intervention in the context of autism does one thing and one thing only: it 'teaches' children to interact with a robot. It provides a false reality that, whilst initially, might produce some gains for some children, does not in the longer-term prepare children for the very complicated social world. Interacting with a robot is not the same as interacting with children in a school playground or later, interacting with people in the workplace and beyond. Interacting with a robot is not the same as sitting in a job interview or interacting with the human face(s) of our very complicated social benefits systems to ensure suitable allowances are (rightfully) provided. Interacting with a robot is, well, interacting with a robot.

I'm not totally poo-pooing this work. There may yet be potential from such robot interactions that may provide transferable skills. At the moment however, we have little to no scientific data to backup the idea that robot-mediated intervention is anything more than a fun addition to the learning experience over some long-term meaningful teaching tool. Certainly, we have nothing to suggest that social interactive skills for example, are going to be significantly improved in the longer-term by sitting down and interacting with a robot.

To close, kids, don't be swayed by your robot companions...

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[1] Huijnen CAGJ. et al. Roles, Strengths and Challenges of Using Robots in Interventions for Children with Autism Spectrum Disorder (ASD). J Autism Dev Disord. 2018. July 17.

[2] Huijnen CAGJ. et al.  How to Implement Robots in Interventions for Children with Autism? A Co-creation Study Involving People with Autism, Parents and Professionals. J Autism Dev Disord.  2017;47(10):3079-3096.

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Wednesday, 16 May 2018

The headline: "One in nine young people in Scotland have attempted suicide"

I have to say that I drew a sharp intake of breath when I read the media headline titling this post - "One in nine young people in Scotland have attempted suicide" - based on the findings reported by Rory O'Connor and colleagues [1]. The idea that, from a sample of some 3500 young people in Scotland, some 10% and 15% of respondents to the questions: "Have you ever made an attempt to take your life, by taking an overdose of tablets or in some other way?’ and ‘Have you ever deliberately harmed yourself in any way but not with the intention of killing yourself? (i.e. self-harm)" answered in the affirmative, seemed pretty important. Not least with the question 'why?' in mind.

OK, media headlines aside, the O'Connor findings require some dissection. The reasoning behind studying this issue was not only to look at the very complicated topic of suicide in a part of the UK (Scotland) that authors write "has a higher suicide rate than England", but also to try and understand how non-suicidal self-injury (NSSI) or non-suicidal self-harm (NSSH) presents in young adults and whether there is something important linking NSSH and suicidal thoughts and/or attempts.

The participant group was drawn from "a representative sample of young people aged 18–34 years from across Scotland" who were recruited to the Scottish Wellbeing Study. Lots of measures were completed by participants as part of the wider study initiative but we are told that "only the prevalence of NSSH and suicide attempts information is reported" in the O'Connor article on this occasion. I might also add that participants were compensated to the tune of £25 (pounds sterling) for their time and participation.

Alongside those headline findings on self-reported attempted suicide and self-harm, a few other important trends were observed. So: "More than 20% reported lifetime suicidal thoughts, 2.4% reported that they last thought about suicide in the past week and 10.4% reported they last thought about suicide in the past 12 months." Around 6% of respondents reported that they had both attempted suicide and also engaged in self-injury suggesting that professionals should "routinely enquire about history of self-injurious behaviour, especially as past behaviour is such a strong predictor of suicide." Also: "Earlier age at NSSH or suicide attempt onset was associated with more frequent lifetime NSSH and suicide attempts." And finally: "The prevalence of NSSH and suicide attempts was significantly higher among those classified as unemployed... and economically inactive... compared with those who were employed." Age, societal and environmental factors seem to play some roles too.

Then to another important set of questions: (a) why? and (b) what can be done to reduce these headline-grabbing statistics? Well, there are no easy answers to such questions I'm afraid. The authors do note that: "From a public health perspective, the unemployment and economic inactivity findings are noteworthy" and perhaps suggest that there are some modifiable variables that could influence suicidal thoughts and/or actions focused on getting people into employment and the benefits that this brings (wide-ranging benefits by all accounts). But this probably only covers one side of the issue, as discussions inevitably turn to what role psychiatric and/or behavioural comorbidity might play in such reporting (see here and see here and see here) and whether there may be a need for (a) something like enhanced screening for suicidal thoughts or other 'risks' among selected populations and/or (b) the [careful] use of 'preventative' strategies in such cases (see here and see here). I say all that accepting that diagnoses around mental health probably play an important role in suicide-related behaviours but are not necessarily a pre-requisite...

As always, there is always someone to talk to if needed...

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[1] O'Connor RC. et al. Suicide attempts and non-suicidal self-harm: national prevalence study of young adults. BJPsych Open. 2018; 4: 142-148.

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Thursday, 10 May 2018

"To Be Quite Honest, If It Wasn't for Videogames I Wouldn't Have a Social Life at All"

The quote heading this post - "To Be Quite Honest, If It Wasn't for Videogames I Wouldn't Have a Social Life at All" - comes from the findings reported by Erinn Finke and colleagues [1]. They looked at "the perceptions of individuals with autism spectrum disorder (ASD) who play videogames as their primary leisure activity regarding the role of videogames in their lives and their motivations for playing videogames."

I've kinda touched on this topic before on this blog (see here) and some of the ins-and-outs of 'pathological' videogame use in the context of autism. On that blogging occasion, I mentioned how one has to be a little careful about 'demonising' an activity that (a) is enjoyed by millions of people, some of whom are and some aren't diagnosed with an autism spectrum disorder, and (b) could, through the wonders of online gaming, provide a valuable 'social' outlet to a population who either might prefer limited face-to-face contact or are in many ways, discriminated against when it comes to more traditional forms of social inclusion and participation (see here). Apparently this area is also something that has been mentioned at the INSAR conference this year too. The downsides to gaming: well, every moment sat in front of a screen is a moment that could have been used in other more physically active pursuits (something that is quite a big issue when it comes to quite a proportion of the autism spectrum). I might also add that mention of the word 'online' can sometimes mean opening up a whole can of worms...

Finke et al relied on a qualitative study methodology that involved asking young adults about their experiences of videogame playing. Bearing in mind the small number of participants under study, authors observed that "participants perceived playing videogames to have a positive impact on their lives and their development." Aside from the enjoyment angle (an important angle by all accounts), participants mentioned about the 'social' element to their videogame playing. Interesting too was another comment from Finke: "The motivations for playing videogames described are similar to those reported by typically developing populations." Why would they be any different?

The authors see the potential value of videogaming when it comes to "teaching" in the context of autism but I'm slightly reluctant to take up this idea for a few reasons. Foremost is the idea that not every activity where autism is mentioned really needs to be 'medicalised' or indeed, 'interventionised' (if there is such a word). I think back to all the discussions about Lego 'therapy' (see here) for example, and how it would be really easy to turn a pastime that is really enjoyable into something more like schooling, and then onward potentially make it less enjoyable. I would also mention that the types of videogames likely to be enjoyed by those on the autism spectrum are probably the same types of videogames that everyone else likes to play. So developing new 'autism-specific' games with intervention(s) in mind are not likely to go down too well in the context of gaming choice and their applicability to larger audiences. Indeed, it could be seen as discriminatory. And yes, then there is also the notion that 'interventionising' videogames will probably also promote yet more sedentary behaviours, something which we should all be keen to discourage (and I have my views about which physical activities might be considered favourable for many young people both on and off the spectrum).

Music to close and Céline Dion with a special guest... Deadpool? Although, his heart probably will go on given his renowned healing abilities...

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[1] Finke EH. et al. "To Be Quite Honest, If It Wasn't for Videogames I Wouldn't Have a Social Life at All": Motivations of Young Adults With Autism Spectrum Disorder for Playing Videogames as Leisure. Am J Speech Lang Pathol. 2018 Apr 2:1-18.

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Thursday, 5 April 2018

Estimated autism prevalence in Canada in 2015: 1 in 66

"On March 29, 2018, the Public Health Agency of Canada published the first comprehensive review of the prevalence of autism spectrum disorder (ASD) in Canada."

So began the 'what did we find' summary (see here) covering the "Made in Canada" findings detailed in the Canadian National Autism Spectrum Disorder Surveillance System (NASS) 2018 Report (see here) [1]. Pertinent to the year 2015 and including some 88% of the children and young adults living in various participating Provinces and Territory, data was gathered from various sources (education, social services, health) onward to the estimated prevalence of diagnosed autism in Canada.

Their results: "Among children and youth 5–17 years old across seven provinces and territory, the combined prevalence of ASD for the year 2015 is 1 in 66 (15.2 per 1,000)" (bold text added by me).

Details, details, details... Such an estimate applies to children and young adults (youth) diagnosed with autism and does not say anything about the number of adults diagnosed with autism. It only covers those diagnosed with autism based on strict criteria: "The diagnosis of ASD is provided or confirmed by a licensed health care professional(s)... [and] The diagnosis of ASD is based on the clinical criteria in the Diagnostic and Statistical Manual (DSM) for Mental Disorders or the case is identified as ASD in the International Classification for Diseases (ICD)." It does not provide any information on how many people *might* be autistic but not yet in receipt of a diagnosis. Males made up the lion's share of those diagnosed. Most had been diagnosed by the age of 8 years (72%). Oh, and not every Province or Territory showed the same estimated prevalence rate for various potential reasons. And rest.

Also pretty important to the reported findings is the comparison with earlier years estimates: for 3 geographic locations in Canada we see the characteristic 'upward trend' in the estimated prevalence of ASD noted in other sample data from other countries, from around 4-6 per 1,000 in 2003 to between 16-20 per 1,000 in 2015. And when compared with a neighbour to the South (USA) and their estimated autism prevalence stats covering 2012 (see here) coming up with a figure of 1 in 68, the Canadian estimates are not a million miles away,. This, bearing in mind, some differences in the way the different country figures were arrived at and also the time periods covered. That also reminds me, we should be seeing the latest US stats on estimated autism prevalence from the CDC at some point in the (very) near future, and the promise that "the ADDM Network will be able to estimate ASD case status on the basis of both DSM-5 and DSM-IV-TR." Those comparisons should be rather interesting in light of other preliminary data (see here).

What else it there to say? Diagnosed autism is fairly prevalent across Canada (who have some important history in relation to the autism 'numbers game') and I assume we'll be seeing more on their tracking of the diagnosis in future times. Preparation is an important part of the figures being discussed; preparation of education, social and health services to support the numbers of children and young adults being diagnosed now and who, I assume, will eventually be transitioning to adult services. And on the topic of adult services, I'll refer you to Harold Doherty's blog and some of his opinions on adult services in a Canadian setting (see here).

Finally, is the question of 'why' the increase? Well, let's wait and see what those US CDC figures say first and how useful they might be to answering 'why' in the Canadian and other contexts too. I say this accepting that those 'better awareness', 'diagnostic switching' and 'broader criteria' arguments that have long been trumpeted as 'fact' are probably not all there is to see in this area (see here and see here).

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[1] Autism Spectrum Disorder among children and youth in Canada 2018. Public Health Agency of Canada. 2018. March 2018.

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