What do "Self-Identified Persons With Autism" tweet about?

"This study aims to explore the feasibility of using the Web-based social media platform Twitter to detect psychological and behavioral characteristics of self-identified persons with ASD [autism spectrum disorder]."

That was the study aim described by Yulin Hswen and colleagues [1] demonstrating that everyone's various musings on social media platforms like Twitter are fair game for lots of different people and different uses (see here) including that of research purposes. As if to prove the point, authors also mention that: "This study was considered exempt from ethical review because only publicly available Web-based data collected from the Twitter platform were analyzed."

Researchers reported that "152 self-identified users with ASD and 182 randomly selected control users from March 22, 2012 to July 20, 2017" were the lucky (unsuspecting) participants of their study. Said participants were also chosen "from users who consented on Twitter to disclose their data publicly (ie, no privacy settings were selected by users) and are completely public." Various hashtags were used to identify said users (participants) including the #actuallyautistic tag, as researchers mention how their study was "the first study to identify ASD users through Twitter." Hmmm...

So what did researchers do? They examined the content of tweets. They examined tweets in relation to "the emotions of fear, anxiety, and paranoia" on the basis that previous investigations have "identified these emotions as key differentiating emotions of persons with ASD compared with matched populations without an ASD diagnosis." I'm not too sure that such sweeping generalisations are pertinent to everyone on the autism spectrum but there you go...

That's not all, as we are told that "the presence of OCD-related tweets" was also included for analysis. OCD refers to obsessive compulsive disorder, and the reasoning behind this was "to understand whether these symptoms are present among Twitter users with ASD and whether the presence or absence of digital obsessive-compulsive symptoms could assist in reducing misdiagnoses of ASD." There is the potential for overlap between autism and OCD (see here for example) so this makes sense. A few other parameters were also included for study including what time people tweet at.

Results: people (both autistic / with autism and not autistic) tweet quite a lot. I don't think anyone should be surprised at this (certainly I'm not). Onward: "Users with ASD posted a greater number of tweets compared with control users for all 3 emotions" under investigation. When they added up the total number of tweets from the groups mentioning the words fear, anxiety and paranoia, "Twitter users with ASD posted a higher number of tweets compared with control users."

Also: "Users with ASD posted a higher number of tweets compared with control users for 4 OCD-related keyword categories—fixate,... count,... excessive,.. and concern." That being said, for 8 other 'OCD-related keywords' such as 'obsess' and 'worry' there was no statistical difference between the groups. I'm not exactly sure what the word 'freak' also included in the OCD-related keywords had to do with OCD or anything else. But ho-hum.

So what was the net result of all this? To tell you the truth, I honestly don't know for sure. OK, some people who 'self-identify as autistic' seem to tweet certain words more frequently, but does this actually mean anything? Does the content of their tweets really reflect their emotional or other state? And is there anything like 'an autistic tweet' or 'pattern of tweets'? I'm inclined to say probably not despite the findings reported by Hswen et al. We're some way of from diagnosing autism or anything else by social media content in case you're wondering.

Caveats? Well, lots. The use of 'self-identifying' as a proxy for 'actually diagnosed' and the problems associated with that is a standout issue. Even the authors acknowledge that: "There is a possibility, however, that there are some who might have self-diagnosed themselves as having ASD without a clinical consultation, and we, therefore, cannot verify the clinical diagnosis of ASD in our study population." Er, yeah, this is an issue. And once again I'm going to post some science - peer-reviewed science - on why formal diagnosis trumps self-diagnosis every single time (see here and see here for examples). Also: "Twitter users who self-identify as having ASD may not be representative of the general population of individuals with ASD." Another big yes from me, on the basis that (a) large swathes of the population, whether diagnosed with autism or not, are not all that keen on using social media, and (b) autism is a label that covers a huge amount of heterogeneity in terms of the population it covers, meaning that some people can't access things like Twitter in the same way as others can. It's highly unlikely that one would be able to say that any group of Twitter users are representative of any group in 'the real world' and that includes those diagnosed with autism. I'd even argue that talk about an 'autistic community' on something like Twitter or anything else is a misnomer given the huge heterogeneity in functioning, views and opinions that is present across the autism spectrum (see here).

And since we're on the topic of Twitter data being mined and researched, the paper by Giorgianna Passerello and colleagues [2] continues the theme...

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[1] Hswen Y. et al. Using Twitter to Detect Psychological Characteristics of Self-Identified Persons With Autism Spectrum Disorder: A Feasibility Study. JMIR Mhealth Uhealth. 2019 Feb 12;7(2):e12264.

[2] Passerello GL. et al. Using Twitter to assess attitudes to schizophrenia and psychosis. BJPsych Bull. 2019 Feb 20:1-9.

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"The Camouflaging Autistic Traits Questionnaire (CAT-Q)"

There are quite a few reasons why the findings from Laura Hull and colleagues [1] are to be welcomed. Their report detailing the development and validation of the The Camouflaging Autistic Traits Questionnaire (CAT-Q) covers an important area of autism research and practice that has hitherto been quite extensively discussed in lay circles but not readily quantified in scientific ones.

So: "Social camouflaging is defined as the use of strategies by autistic people to minimise the visibility of their autism during social situations." Further: "Camouflaging is driven by the desire to ‘fit in’ so as to appear non-autistic, and to form relationships with others, which may be harder to achieve when the person presents autistic behaviour." Discussions about camouflaging/masking in the context of autism have figured in some peer-reviewed research already; stretching from some worrying data on the risk of suicidality (see here) to discussions about friendship experiences (see here) to potentially hindering assessment and diagnostic outcomes (see here). The difficulty so far however, is a lack of instruments able to accurately quantify camouflaging...

Hull et al set out to develop their questionnaire to fill the gap between lay reports and science, and perhaps eventually provide some data pertinent to questions like: "Who, among the many different autistic people, camouflages their autism? Do autistic girls and women camouflage more than boys and men, and does this partly account for gender disparities in the rate and timing of diagnosis? What is the relationship between camouflaging and mental health outcomes?"

I won't bore you with psychometric details of how the CAT-Q was developed and validated. Suffice to say that it was developed from "autistic adults’ experiences of camouflaging" combined with initial testing results from several hundred people both on and off the autism spectrum. That's not to say there aren't issues to consider with for example, the use of an on-line survey or that "the self-report CAT-Q only measures individuals’ own reflections/perceptions of their camouflaging behaviours, and is thus limited in its use to those who are able to reflect on their own behaviours and provide insight to their motivations." But it does represent a good first effort to look into this important area. I'd also hat-tip the researchers for another part of their study protocol: "Those who reported being self-diagnosed were automatically excluded from the study and did not complete any further questions." I support this on the basis that self-diagnosis does not necessarily mean accurate diagnosis (see here and see here) no matter how many people would wish it to be so.

I was also interested to read about the authors' findings breaking down camouflaging into some smaller units. So: "Compensation (strategies used to actively compensate for difficulties in social situations), Masking (strategies used to hide autistic characteristics or portray a non-autistic persona), and Assimilation (strategies that reflect trying fit in with others in social situations)." Such descriptions are important insofar as putting some scientific flesh onto the bones of social camouflaging and the possible processes/motivations behind it.

What else? Well, there is a need for more investigation in this area. The authors have already highlighted some of the areas that need more study (who, males vs females, mental health outcomes). Minus any sweeping generalisations and without trying to furrow any brows, I'd also add that study on camouflaging might also be something to consider in another autism-related context: those presenting with so-called 'optimal outcome' where some people who were previously diagnosed and presented as autistic, no longer do so (see here and see here). I'm not saying this to somehow imply that all those who have experienced a 'loss of diagnosis' are somehow all camouflaging their symptoms. But it would be interesting to look-see whether this could explain a proportion of cases and indeed whether some camouflaging might not be as negative as some people might think (see here)...

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[1] Hull L. et al. Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q). J Autism Dev Disord. 2018. Oct 25.

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"Children are getting weaker, study finds"

The title of this post - "Children are getting weaker, study finds" - comes from one of the media headlines covering the study findings presented by Gavin Sandercock & Daniel Cohen [1]. In their study, the authors detail results derived from the Chelmsford Children's Fitness and Activity Survey, an initiative that has been monitoring the fitness of local children (local to Chelmsford) for about 20 years. Their results for the most recent cohort (2014) compared with previous study cohorts (2008, 1998) make for worrying reading: children are getting weaker alongside "a decrease in self-reported physical activity concurrent with the accelerated declines in fitness from 2008 to 2014."

So: "We measured; height, weight, standing broad-jump, handgrip, sit-ups and bent-arm hang in 10-year-old boys and girls from Chelmsford, England in: 2014 (n = 306), 2008 (n = 304) and 1998 (n = 310)." Researchers also asked about recent physical activity among their cohort using the Physical Activity Questionnaire for Children/Adolescents (PAQ-C), a self-report questionnaire. The collected results were analysed and among other analyses, authors "compared percentage change per year 1998–2008 with 2008–2014" across the variables being studied.

As per the headline, the results were worrying: "Pairwise comparisons showed muscular fitness of both sexes was significantly lower in 2014 than in 1998." They also observed that self-reported physical activity was lower in the later cohort. Obviously, I need to stress that this was self-reported physical activity information, so not exactly objective actigraphic data for example. Out of the several results reported relating to specific aspects of fitness across the cohorts, the issue of handgrip strength stuck out for me in light of some still emerging research suggesting that handgrip strength might have "prognostic value for mortality" according to some studies. Without wishing to make connection when none might exist, I do wonder whether such data might one day eventually tally with some other quite worrying statistics on longevity recently published?

Another detail discussed by Sandercock & Cohen is their finding that "Ten-year-olds in 2014 were taller and heavier than in 2008 and 1998 but there were no differences in BMI [body mass index]." They authors talk about this more in their media interviews: "As today's ten-year-olds are taller and heavier than the children measured six and 16 years ago we expect them to be stronger and more powerful, but this was not the case." Worrying. And it also appears that the declines in strength were increasing more rapidly in the later cohort than compared with the earlier ones, as the authors mention that from 1998 to 2008, strength (group strength) fell by just over half a percent per year, whereas from 2008 to 2014 this decline increased to 1.6% per year.

So what does this all mean for the health and well being of the next generation, and what can be done to reverse such trends? Well, health in childhood is often a good indicator of what health will look like in adulthood. I say this not only from a physiological point of view but also bearing in mind that habits bred in childhood tend to persist into adulthood. Low levels of physical activity probably also follow that pattern.

The possible reasons to account for the cohort disparities? Minus any sweeping generalisations I don't think it would be out of place to mention that things have changed quite a bit when it comes to hobbies and pastimes for at least some parts of the paediatric population. More time spent playing video games or on the Internet have perhaps replaced previous scenarios when kids would meet (in person), play out, run around, climb trees, play football and the like. I don't say that to demonise such digital pastimes (see here) but rather to point out a shifting pattern in activities that also have been noted in other relevant studies [2]. It's perhaps also worthwhile pointing out that opportunities for physical activity have also perhaps changed as a function of the environment we now live in. Why else would schools have had to implement strategies such as the daily mile for example?

Possible solutions? When I first tweeted about the publication of the Sandercock & Cohen article I added in the idea that physical activity specifically along the lines of strength and conditioning could perhaps be added to the learning curriculum. So, alongside maths and English (here in Blighty), there is also a focus on physical education too. Yes, I know physical ed(ucation) is part of the school agenda, but I actually meant something like getting kids into a gym and doing something akin to circuit training at least a few times a week. I know this is ambitious and I know that not every kid is going to be able to do this. But surely in these days of adaption and flexibility in teaching and learning, there are also ways to make such exercise open to all. And you never know, start children young with the mindset that exercise is fun and good for physical (and mental) health, and it might just serve them for a lifetime...

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[1] Sandercock GRH. & Cohen DD. Temporal trends in muscular fitness of English 10-year-olds 1998–2014: An allometric approach. Journal of Science and Medicine in Sport. 2018. Aug 1.

[2] Walsh JJ. et al. Associations between 24 hour movement behaviours and global cognition in US children: a cross-sectional observational study. The Lancet Child & Adolescent Health. 2018. Set 26.

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Statistically significant group differences in self-reported repetitive movements between diagnosed and self-identifying autism

One needs to remember that, at the time of writing this post, the article posted by Joost Wiskerke and colleagues [1] suggesting that "camouflaging of RMs [repetitive movements] may contribute to under diagnosis of autism, at least in females and transgender people" is just a preprint ("a version of a scholarly or scientific paper that precedes publication in a peer-reviewed scholarly or scientific journal"). It has not been through formal peer-review yet, but rather the authors have bravely 'put it out there' for old farts like me to pore over.

Having glanced through the abstract first and discovered the use of the words "self-identified as autistic" my brow furrowed somewhat. Upon further reading of the paper in its entirety, the furrowing brow furrowed a little less as I understood why the authors mentioned use of a cohort that was "56% formally diagnosed participants and 44% who self-identified as autistic." But that's not to say that I was completely enamoured with the study write-up as it currently stands...

Before continuing and in order to repel any accusations that come my way, I'll mention that I don't have any particular issue with people without a formal diagnosis of autism thinking/believing they are on the autism spectrum. It's their right to do so and indeed, such self-realisation is often an important step towards getting a professional assessment for autism. For some people, their hunch about being autistic eventually turns out to be correct as per them reaching defined clinical cut-off points for autism on the various instruments of assessment that are available during said professional assessment. But that's not to say that every person who self-identifies as being autistic/having autism is always going to be right. As we are starting to realise from the wealth of peer-reviewed science on this topic, the label autism does not seemingly have any exclusive rights to the presentation of autistic traits (see here and see here for examples). And it is for that reason why we have so many good and knowledgeable diagnosticians when it comes to such professional assessments, combined with an important focus on: "Symptoms caus[ing] clinically significant impairment in social, occupational, or other important areas of current functioning" in order to receive a diagnosis. Access to such autism assessments is another issue, but shouldn't be used as an excuse...

Onward:

Wiskerke et al started from the premise that repetitive movements (RMs) are common in autism but there are some potentially important differences in the expression of such issues between the genders. This follows other independent findings in this area (see here) detailing how stereotyped and repetitive behaviours may be less frequently observed in females [2] minus any sweeping generalisations. Researchers then moved on to suggesting that one of the reasons why such RMs may be less frequently observed is because they are actively being masked or camouflaged, and this could eventually lead to an under-diagnosis of autism among certain groups. 'Masking' or camouflaging in the context of autism is a bit of a hot [social media] topic at the moment (see here and see here).

"In this exploratory study, we took a first step... by using self-report measures from a large number of female and transgender adults, using recruitment on social media to an on line questionnaire." Ah yes, the on line questionnaire, which seems to becoming more and more popular in certain autism research circles [3] (see here also for another example). There's nothing wrong with using such tools for asking about opinions and the like, but they are typically open to anyone and everyone (who has access to the internet!), and not exactly great for authenticating complicated things like clinical diagnoses, behaviours and comorbidity for example. As for the incorporation of data from transgender adults, well, again this follows a theme in autism research recently (see here) where 'autistic identity' and sexual identity seem to be converging for some people/groups (see here).

"We assessed current RMs using a combination of visual analog scales for specific behaviors and textboxes for free-text responses." There's mention of using some of the DSM-5 criteria for autism in this section. Authors also talk about testing for camouflaging "using the matrix multiple-choice question “Did/do you hide these behaviors from others…” 1) “…as a child?”, 2) “…as an adolescent?”, 3) “…as an adult?”" Yet again (see here) a research priority needs to be the formulation of a valid and reliable questionnaire pertinent to 'measuring' masking/camouflaging with autism in mind. And finally there was the use of an old favourite  - the autism spectrum quotient (AQ) - by the authors, but with some added caveats...

Results:  "We found high rates of RMs in both diagnosed and self-identifying participants, and a striking prevalence of camouflaging" was one of the headlines. But... there were also some other important details observed too. So: "Higher scores in the diagnosed group were found for object fidgeting, repetitive hand movements, rocking, object spinning and hand flapping." I think most people would agree that such behaviours represent some of the more 'classical' manifestations included in the RM categorisation of autism. By contrast, other RMs such as scratching/rubbing skin, walking in circles and 'banging head' were not different between the diagnosed and self-identifying groups.

Based also on the strength of the camouflaging data presented by Wiskerke et al I have to say that I'm not yet altogether convinced by the evidence presented. It's not that I don't believe that 'self-inhibition' plays a role in such masking, nor that: "There were many references (47 participants) to having been bullied or disciplined for childhood RMs." It's just that methodologically speaking, offering up one question on such a complicated issue does not make for a scientifically compelling argument. As I previously said, autism science needs to invest in some high quality research on how to assess masking in the context of autism; perhaps including some important measure of self-monitoring for example. And one also needs to control for things like intellectual ability too and perhaps be open to other reasons why the presentation of autism between the genders/sexes might be subtly different.

I was also a little dismayed that the discussion of results by the authors did not seem to fully 'tally' with their findings. So: "The striking similarities between diagnosed and undiagnosed participants are consistent with a clinically relevant prevalence of autism in the undiagnosed group." As I've mentioned, the picture of 'striking similarities' was far from consistent when comparing RMs across the groups and those statistically significant differences reported on between diagnosed and self-identifying autism. Added to the fact that authors zoomed in on RMs without too much clinical focus on the other elements to autism, and the 'clinically relevant' picture is also far from complete based on this study alone. Indeed, other text in the discussion provide further clues as to the probable inclination of the authors: "We believe that this study in part reached the “lost generation” of autistic adults... many of whom appear to have turned to social media for support and kinship, sometimes after many disappointing encounters with clinicians and scientists." Emotive language such as 'Lost generation' really shouldn't be in a science paper without [strong] corresponding evidence.

What else? Well the authors did acknowledge some shortcomings in their study: "the on line format limited our ability to ascertain that robust diagnostic procedures had been used in all cases" and: "The self-report format also makes it possible that some participants erroneously reported an official diagnosis" (erroneously?) but perhaps more is needed to be said about participants ("the vast majority were indeed very cognitively able") and onward the applicability of results to other parts of the autism spectrum. It would also have been useful to include a few other (self-report) measures of other conditions/labels where autistic characteristics overlap, just to see...

I do think Wiskerke et al have tapped into a increasingly important research 'need' for some of those on the autism spectrum - masking - and how such behaviour does seem to impact on quality of life for quite a few people. We need a lot more research on this topic, and yes, there also needs to be some further analysis of what social accommodations could be made too, bearing in mind such understanding needs to come from lots of different quarters of society (see here). I'd also like to acknowledge the fact that one of the authors on the Wiskerke took the time to converse (on Twitter) with me about their paper, which was rather encouraging.

But still, I can't shake the idea that the methodological shortcomings of this study and the sweeping interpretations imply caution before any generalisations are made as a result. The fact also remains that self-identifying as being autistic/having autism is not the same as receiving a formal diagnosis of autism, however much people might want this to be true or find 'kinship' with the autism spectrum...

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[1] Wiskerke J. et al. Camouflaging of repetitive movements in autistic female and transgender adults. bioRxiv. 2018. Sept 10.

[2] Mandy W. et al. Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents. J Autism Dev Disord. 2012 Jul;42(7):1304-13.

[3] Kupferstein H. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism. 2018; 4: 19-29.

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Internet addiction and suicidal behaviours meta-analysed

"This meta-analysis provides evidence that internet addiction is associated with increased suicidality even after adjusting for potential confounding variables including depression."

That was the research bottom line reported on by Yu-Shian Cheng and colleagues [1] following their meta-analysis of the peer-reviewed research literature looking at 'internet addiction' ("internet addiction OR internet gaming disorder OR internet use disorder OR pathological internet use OR compulsive internet use OR problematic internet use") and suicidality.

Researchers, with some experience of meta-analysis it has to be said (see here and see here), trawled through the pertinent literature and settled on the analysis of some 25 studies, including over a quarter of a million participants, that looked at internet addiction and suicidal ideation, planning, and attempts. Boiling the data down, they observed some important *associations* that even held when important variables linked to suicidal behaviours - depression for example - were adjusted for. Children it seems, were also more 'vulnerable' to the link between internet addiction and suicidality. The authors caution that cause-and-effect were not proven from their analysis of the collected data, bearing in mind "the evidence was derived mostly from cross-sectional studies" but call for further investigations in this area.

This is an important area of research. As per some of the previous studies conducted on internet overuse and suicidality [2], there are some important further investigations to be undertaken on for example, the various types of online activity that might increase the risk of suicidality: "online gaming, chatting, watching movies, shopping, and gambling were associated with an increased risk of suicidal attempt." This in the context that social media use in particular, is under the spotlight when it comes to various different health issues (see here). Alongside gambling disorder, so it looks like gaming disorder is set to enter the diagnostic texts too (see here), where 'lack of control' and causing "significant impairment in personal, family, social, educational, occupational or other important areas of functioning" are key features. And minus any sweeping generalisations, 'control' *could* actually be a key element to consider when it comes to suicidal behaviours in certain circumstances.

Bearing in mind that this blog is predominantly concerned with autism research, I couldn't help but think about how the Cheng findings *might* relate to [some] autism. How for example, a diagnosis of autism also seems to elevate the risk of suicidality (see here) and how issues like depression are not uncommon in the context of autism (see here). I'm also minded to mention how compulsive internet use *might* show some important connections to the presentation of autistic traits [2] and how videogame use, in particular (see here), might have both positives and negatives in the context of autism [3].

By saying all that, I don't want to make any sweeping generalisations; the label of autism has had enough of those down the years. I don't also want to demonise the wonderful resource that is the internet, particularly when pastimes like gaming and social media use can be a good 'social' outlet for many people on the autism spectrum and beyond when used in moderation. Certainly the internet, through things like social media, provides an important voice and potentially quite a lot more to those whose voices might previously not have been heard...

But perhaps when it comes to the next stage of any research plan looking at internet overuse / addiction and suicidal behaviours it might be worth considering whether some of the features of autism or other, related labels [4] (see here) *might* also moderate any relationship. Whether there are some relevant lessons to be learned that *might* reduce the very worrying statistics on suicide and autism, and whether activities other than those done on online, could perhaps be seen as 'protective factors' when it comes to suicide risk (see here for example)?

Bear all that in mind by all means. But remember also that the paths that take someone to such suicidal behaviours are often numerous and individual. Internet overuse is probably only a small part of an often bigger and more complicated picture.

And in case anyone needs to talk or text, there's always someone who will listen (see here).

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[1] Cheng YS. et al. Internet Addiction and Its Relationship With Suicidal Behaviors: A Meta-Analysis of Multinational Observational Studies. J Clin Psychiatry. 2018 Jun 5;79(4). pii: 17r11761.

[2] Lin IH. et al. The association between suicidality and Internet addiction and activities in Taiwanese adolescents. Compr Psychiatry. 2014 Apr;55(3):504-10.

[3] Mazurek MO. & Wenstrup C. Television, video game and social media use among children with ASD and typically developing siblings. J Autism Dev Disord. 2013 Jun;43(6):1258-71.

[4] Wang B. et al. The association between attention deficit/hyperactivity disorder and internet addiction: a systematic review and meta-analysis. BMC Psychiatry. 2017;17:260.

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On gender reassignment seeking behaviour and autism

The results published by Josephine Fielding & Christopher Bass [1] provide the blogging discussions today. Specifically the observations that: (i) there seems to be a growing demand for gender reassignment services here in Blighty (tied into the concept of gender dysphoria: "where a person experiences discomfort or distress because there's a mismatch between their biological sex and gender identity"), and (ii) there is a "high rate of psychiatric comorbidity" present in those attending gender reassignment services, including that: "Twelve patients (7.8%) had autism spectrum disorder."

OK, first I'll mention that whilst the authors use the term 'psychiatric comorbidity' with reference to conditions like depression and social phobia (social anxiety disorder) being present in their participant group, autism really shouldn't be included under such an umbrella term. Autism is a developmental label that, whilst seemingly carrying a heightened risk for various psychiatric disorders appearing alongside (see here for example), is not currently defined as a psychiatric disorder.

Next up: this is not the first time that the words 'autism' and 'gender dysphoria' have been linked together (see here and see here). Indeed it seems to be one of the 'hot topics' of recent peer-reviewed research times (see here). There's still some 'discussion' about whether a diagnosis of autism is important to gender dysphoria, or whether one or more of the over-represented comorbidities appearing alongside *might* play a more important role, but there is some interest in this area.

Fielding & Bass examined "the pattern of referrals and characteristics of people aged over 18 seeking gender reassignment in Oxfordshire over a 6-year period (2011-2016)" as a consequence of "an extraordinary increase in the number of referrals to both adult and child and adolescent gender clinics, with services becoming overwhelmed." The included details for over 150 attendees and noted both an increase in referrals (albeit not uniform) and also a gradual reduction in the mean age of attending participants. Then to the crux of today's post: "Of those who attended for assessment, 60 (39.2%) had a current psychiatric comorbidity, and 81 (52.9%) had a past history of mental illness." Depression was by far the most common psychiatric diagnosis (approaching 20%) but a diagnosis of autism was also mentioned in a significant minority.

What does this data mean apart from the obvious? Well, it's interesting that autism is specifically mentioned by the authors. Interesting because, yet again, a diagnosis of autism is a factor to potentially consider when it comes to gender dysphoria and onward possible gender reassignment seeking behaviour. Science doesn't yet know all it needs to know about why this *relationship* should exist outside of some speculation on how those on the autism spectrum may be less likely to conform to traditional notions of gender for example. I'm sure that there's some psychobabble explanation for this talking about autism and 'social norms' and the like but...

I note that Fielding & Bass also mention a role for social media in relation to their findings and how gender identity may be developing "possibly because of the increased availability of information about non-binary genders from social media, the internet and peers." Again, I don't know if those on the autism spectrum are more likely to be on social media than their peers or are perhaps more responsive to the idea of 'non-binary genders' as a result. But I daresay there are further investigations that could be done on this topic. Minus any sweeping generalisations and without trying to depict autistic people as universally being overly responsive to gender-related observations on social media and the like, one might also be inclined to look at how the notion of an 'autistic identity' perhaps overlaps with things like sexual identity too. It's something that I've noticed before under other circumstances (see here). I'm careful not to conflate sexual identity with gender identity, but it has always struck me that there are parallels between those who see autism as so much more than a diagnostic label and how autistic identity is seen as akin to sexual identity (i.e. inborn, immutable, 'part of who I am'). I'm no expert in this area but do see the need for further study in this area.

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[1] Fielding J. & Bass C. Individuals seeking gender reassignment: marked increase in demand for services. BJPsych Bull. 2018 Jun 12:1-5.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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'My child is not talking'. Online concerns and internet-based screening for autism?

"Online communities are used as platforms by parents to verify developmental and health concerns related to their child."

That was the starting point for the study results reported by Ben-Sasson & Yom-Tov [1] (open-access available here) who approached an increasingly important issue related to how the Internet and social media in particular, is fast becoming one of the 'go-to' options when it comes to parental concerns about their child's development and the question: could it be autism?

So: "we analyzed online queries posed by parents who were concerned that their child might have ASD and categorized the warning signs they mentioned according to ASD [autism spectrum disorder]-specific and non-ASD-specific domains." The online queries included for study came from "the Yahoo Answers platform" between June 2006 and December 2013. There's a lesson there to reiterate that the Internet is an open platform and what you post is typically in the public domain and hence fodder for many different purposes...

Authors turned up quite a few thousand queries, determining that over 1000 were "posted by parents who suspected their child might have autism". They randomly selected 195 to be used as the basis for this study. I personally don't know why 195 were selected and not rounded up to say 200, but ho-hum. Content analysis - analysing the content of the post! - was undertaken first "to rate a child's risk of ASD as either low, medium, or high". High risk was defined "as concerns related to at least two types of ASD-specific sign, 1 from the RRBI domain and another from the Social and Communication domains" among other things. Then content analysis was used to "identify the types of warning signs noted by parents." From these analyses: "each query received an ASD global risk score and was coded for either presence or absence of each sign domain and its subdomains."

Results: from the 195 queries selected, the vast majority were posted in relation to a boy and most concerned a boy who was aged under 3 years. Contrary to the title of this blog post - 'My child is not talking' - the majority of queries were actually in relation to repetitive and restricted behaviors and interests (RRBI) although concerns related to language were not too far behind in frequency. In relation to those categorisations of low, medium and high risk groups, over half of the queries were labelled as high risk. Interestingly, there were fewer language concerns noted in those allocated to the low risk group than the medium or high risk groups, so perhaps I wasn't so far off with using those 'my child is not talking' words in the title.

But things didn't just stop there for the authors, as the words "test the efficacy of machine learning tools in classifying the child's risk of ASD based on the parent's narrative" are also noted in their paper. Machine learning as in, 'giving computers the ability to learn without being explicitly programmed' according to one definition, is something that has cropped up on the blog before with autism in mind (see here for example). This led to the production of a decision tree - yes or no - "for distinguishing low-risk queries from medium- and high-risk queries." This is interesting but I'd perhaps like to see it tested independently before I say too much more.

In these days of continued austerity and seemingly evermore limited resources when it comes to things like autism assessment and screening for various reasons, this kind of work has an important place. Certainly I don't think posting symptoms on-line with ever replace autism screening, and one has to bear in mind that at least here in the UK, we might have (knowingly or unknowingly) already initiated population autism screening in children (see here) as a consequence of changes to the Healthy Child Program. But with the technological advances being made where machine learning and the connected artificial intelligence are starting to make strides in relation to science and medicine, I don't doubt that one day parents will be typing in their child's symptoms on-line and somehow and somewhere Dr Google or some related system(s) might be talking back...

Music and more bad lip reading applied to Star Wars: No, it's not the future (and watch Chewie holler).

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[1] Ben-Sasson A. & Yom-Tov E. Online Concerns of Parents Suspecting Autism Spectrum Disorder in Their Child: Content Analysis of Signs and Automated Prediction of Risk. J Med Internet Res. 2016 Nov 22;18(11):e300.

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Ben-Sasson A, & Yom-Tov E (2016). Online Concerns of Parents Suspecting Autism Spectrum Disorder in Their Child: Content Analysis of Signs and Automated Prediction of Risk. Journal of medical Internet research, 18 (11) PMID: 27876688

Don't give up

Appreciating that the subject matter of today's post might not necessarily align with the season that is upon us, I wanted to bring to your attention the paper by Michael Westerlund and colleagues [1] (open-access) and some rather disturbing discussions related to a young man who "decided to hang himself and to display the suicidal act" on an internet forum.

Published in the British Journal of Psychiatry, the paper set about examining how "participants on an internet forum act and react faced with suicidal communication and while witnessing the suicidal act." This was done via "a qualitative investigation of the messages that were posted before the TS's [thread starter] suicide and a combined qualitative–quantitative analysis of the messages posted during and after the suicide." A total of 30 posts before the suicide and 608 posts during and after the suicide were examined.

Several themes are discussed in the paper in terms of the authenticity of the discussions, attitudes towards the suicide, opportunities for prevention and: "Responsibility for the TS's suicide." There are some, quite frankly, awful comments discussed in this paper that I won't be repeating on this blog. Importantly however, the authors highlight a few lessons that might be learned from such events based on the fact that "the internet has developed as the main channel for suicide communication" and the possibility that lives could be potentially saved with the right tools for identifying and responding to "individuals who communicate suicide intentions on different forums on the internet." As per another quote from the paper: "the internet can be a facilitator of the suicidal process, but it can also be a venue where opportunities for prevention of suicide loom large."

Although not the main topic of this blog, suicide is something that has cropped up before (see here and see here for example). It is a complicated issue to talk about given that not only are there multiple pathways that bring someone to the position of contemplating taking their own life but also that attempted and completed acts can and do profoundly affect the people around the person in question.

The idea that the internet can be a source of positive information when it comes to reducing the risk of suicide is evident in the peer-reviewed domain [2]. Sueki & Ito [3] discussed the idea of on-line gatekeeping to prevent suicide "by placing advertisements on web search pages to promote consultation service use among Internet users with suicidal ideation." Social media has also been discussed as a good tool to deliver "a range of suicide prevention activities" [4]. The trick, it seems, is getting the relevant information and expertise to those who are currently vulnerable whilst at the same time avoiding issues like possible contagion. I might add that whilst the internet might have a significant role to play in suicide, it does not and should not represent the sum total of discussions about suicide and any potentially related issues (see here).

Bearing in mind the caveats of this blog about not giving medical or clinical advice, I did wonder if it might be useful to link to something like this page containing quite a few points and further links if and when discussions about suicide are raised. For anyone here in Blighty in need, details for the Samaritans can also be found here.

A song to close from Kate Bush and Peter Gabriel.

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[1] Westerlund M. et al. Case study of posts before and after a suicide on a Swedish internet forum. Br J Psychiatry. 2015; 207: 476-482.

[2] Robert A. et al. Internet use and suicidal behaviors: internet as a threat or opportunity? Telemed J E Health. 2015 Apr;21(4):306-11.

[3] Sueki H. & Ito J. Suicide Prevention Through Online Gatekeeping Using Search Advertising Techniques. Crisis. 2015 Jul;36(4):267-73.

[4] Robinson J. et al. Social media and suicide prevention: findings from a stakeholder survey. Shanghai Arch Psychiatry. 2015 Feb 25;27(1):27-35.

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Westerlund, M., Hadlaczky, G., & Wasserman, D. (2015). Case study of posts before and after a suicide on a Swedish internet forum The British Journal of Psychiatry, 207 (6), 476-482 DOI: 10.1192/bjp.bp.114.154484

Parental stress and autism: what's effective at reducing it?

Raising children is an extremely rewarding experience. That's not to say however that every minute of every day is spent with smiles and adoration of your offspring and their various endeavours: "Was that family heirloom that I just dropped on the floor really, really important Daddy?" Generally speaking the majority of parents I imagine though, would look favourably at the experience of going the family-way.

Gathering the light @ Wikipedia  

The rosy picture of having a family is however never truly complete without realising that having children can be quite a stressful experience. Whether as a result of those earliest days of sleep deprivation and almost constant nappy changing duties, through to some of the growing pains as puberty beckons and even onwards into the adult years, stress is a pretty constant companion to the family journey. And the amount of stress parents face in the child rearing odyssey is very much influenced by lots of other external variables such as money, job, relationships et al. Oh and also how many kids you're parenting (see here).

To have a child with additional needs, whether a physical disability or intellectual / developmental disorder, has been suggested to carry it's own unique challenges which can also impact on parental stress levels. I'm not saying that to somehow blame or stigmatise or anything like that, but merely to reflect the quite extensive body of research which has concentrated on that point (see here for example).

There is also quite a large evidence base to suggest that parents report greater levels of stress associated with raising a child with an autism spectrum disorder as per the example article by Koegel and colleagues*. Indeed it is with this area in mind that I stumbled across the paper by Dykens & Lambert** who noted: "Stress-reducing interventions are needed for parents of children with autism" as part of their analysis of cortisol levels in mums raising children, including those raising children with autism.

I've talked about stress and cortisol before on this blog (see here) as per the collected findings in relation to people with autism. The net result of that post was to say that yes, quite a few people on the autism spectrum present with an unusual stress profile (although not necessarily beyond the range seen in not-autism) but importantly, stress - as monitored via cortisol levels - seems to be a rather more continual process for many. Such results have obvious implications in relation to things like the anxiety issues often reported to follow autism.

The highlighted sentence from the Dykens paper on the need for stress reduction interventions for caregivers pinpoints a fairly obvious issue which I'm sure many people would take as read. Indeed with the suggestion from Osborne and colleagues*** that parenting stress might also potentially impact on the effectiveness of early intervention for autism, the questions are: what kinds of stress-reducing interventions are available and importantly, which ones work?

I don't claim to have some special insight into these questions, but a quick trawl of the research literature offers a few potentially important pointers.

(i) Social support. "With a little help from my friends" was a song by the Beatles but also the title of a rather interesting paper by Brian Lovell and colleagues**** on one potential route for tackling caregiver stress. Appreciating that to many this is not new news, it is perhaps little surprise that through the wonders of social media and the Internet, on-line social support groups for parents of children with autism are numerous and easily accessible in our digital age. With all the talk about how such resources might be 'changing our brains' (erm, or not), I'm minded to say that in this example, it might actually be a change for the better.

(ii) Mindfulness. I know, I know. It sounds like psycho-babble mumbo-jumbo to the nth degree when you first hear it. But actually I'm becoming a bit of a fan of mindfulness as per my previous post making mention of the BBC Horizon program 'The Truth About Personality' featuring the ever-intrepid Dr Michael Mosley. The basic idea is to think about the present, nay focus on the present, and manage the thoughts and feelings that are linked to stress. The evidence base for mindfulness for relieving caregiver stress is what might be described as emerging as per the study by Neece***** although with some potential bonuses for offspring too. It's also worth pointing out that mindfulness techniques are seemingly also finding a role in helping some people on the autism spectrum too (see Spek and colleagues******). Relations to mindfulness such as the use of relaxation techniques for caregivers have also been put forward as potentially useful*******. I wonder if something like blogging might also come under the description of 'managing thoughts and feelings'?

(iii) Parent training. I must point out that I am in no way trying to say that anyone is in need of "training" just in case anyone thinks I'm harking back to the bad old 'Bettelheim' days or casting aspersions about parenting style. I merely refer to the body of literature which 'suggests'******** that there may be some merit in looking into this option with stress relief in mind. Whether parent training might also fit under the banner of other programs such as RDI or more generic programs like Stepping Stones Triple P and any knock on effects this might have to parent stress levels is something perhaps requiring a little bit more study in order to define things like potential best responder characteristics.

(iv) Respite. I don't think this option really needs much explanation. Harper and colleagues********* said it best: "More respite care was associated with increased uplifts and reduced stress". Indeed, part of that reduction in stress was seemingly getting a little more quality time with your spouse or significant other... break out the Marvin Gaye. Seriously though, I can't stress enough how important respite care can be to some families. And if you happen to live here in Blighty (that's the UK), there are quite a few resources about respite and how to access the care: see here and here.

(v) A hobby or external interest. Although this is supposed to be an evidence-based post, there are a few other stress-relieving options that have been mentioned in a more anecdotal fashion. An interest involving physical exercise as a stress reducer seems to be a common theme. Indeed as I write this post, I'm just watching the preparations for the Great North Run on this slightly soggy Sunday morning and one parent of a child with Asperger syndrome running for the charity Ambitious About Autism. Using her running preparations as a way of getting some down time was mentioned in her interview. Other parents have talked about the use of activities like martial arts as being a stress reducing tool, which did make think back to some other work on the use of martial arts as a self-esteem builder for children with autism (see here). I'm not necessarily saying that every parent has to immediately join their local Jui-jitsu class or anything like that, but one can perhaps see how the process of physical activity might serve more than just a physical purpose.

I've only really scratched the surface with this post on parental stress and autism and how one might go about tackling / reducing it. If you want a perspective from a parent with autism who is also a medical doctor, look no further than these insights (see here) from a physician who's research has previously appeared on this blog (see here).

One might also argue that tackling some of the more 'disruptive' issues associated with autism which have been reported to be linked to greater parental stress (see here) might also be another route to reducing stress. The very interesting paper from McStay and colleagues********** reporting that "child hyperactivity was the only factor significantly related to parenting stress in parents of children with autism" might even tie into some of the observations we've made recently on the use of a GFCF diet (see here) and even explain some of the popularity of this approach. Indeed, I've not really approached the question of whether comorbidity (including ESSENCE) appearing alongside autism might also be a significant source of parental stress, as one might expect from something like epilepsy or seizure-related disorders for example. And then there is the increasingly common scenario of parents (one or both) with autism bringing up children with autism and how that situation might present additional unique parental stresses. Let us also not forget other siblings of the family unit too and how stress can affect them.

What remains apparent is that (a) parenting, as well as very rewarding, can be a stressful activity, (b) parenting a child with additional needs can carry some of its own unique stresses and (c) tackling or reducing that stress has got to be a win-win situation for everyone concerned; importantly not just for the child, but also for parents too (see here) including in relation to related aspects like fatigue.

To close, some music to dance to (dancing is also a very good stress-relieving activity I'm led to believe).... Wham and Wake Me Up Before You Go-Go. And for all you fathers out there who partake of a bit of 'dad dancing', a hypothesis for you to consider...

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* Koegel RL. et al. Consistent stress profiles in mothers of children with autism. J Autism Dev Disord. 1992 Jun;22(2):205-16.

** Dykens EM. & Lambert W. Trajectories of Diurnal Cortisol in Mothers of Children with Autism and Other Developmental Disabilities: Relations to Health and Mental Health. J Autism Dev Disord. 2013; 43: 2426-2434.

*** Osborne LA. et al. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. J Autism Dev Disord. 2008 Jul;38(6):1092-103.

**** Lovell B. et al. With a little help from my friends: psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Res Dev Disabil. 2012 Mar-Apr;33(2):682-7. doi: 10.1016/j.ridd.2011.11.014.

***** Neece CL. Mindfulness-Based Stress Reduction for Parents of Young Children with Developmental Delays: Implications for Parental Mental Health and Child Behavior Problems. J Appl Res Intellect Disabil. 2013 Jul 1. doi: 10.1111/jar.12064.

****** Spek AA. et al. Mindfulness-based therapy in adults with an autism spectrum disorder: a randomized controlled trial. Res Dev Disabil. 2013 Jan;34(1):246-53. doi: 10.1016/j.ridd.2012.08.009.

******* Gika DM. et al. Use of a relaxation technique by mothers of children with autism: a case-series study. Psychol Rep. 2012 Dec;111(3):797-804.

******** Bendixen RM. et al. Effects of a father-based in-home intervention on perceived stress and family dynamics in parents of children with autism. Am J Occup Ther. 2011 Nov-Dec;65(6):679-87.

********* Harper A. et al. Respite Care, Marital Quality, and Stress in Parents of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Mar 26.

********** McStay RL. et al. Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism. 2013. 8 October.

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Dykens EM, & Lambert W (2013). Trajectories of Diurnal Cortisol in Mothers of Children with Autism and Other Developmental Disabilities: Relations to Health and Mental Health. Journal of autism and developmental disorders PMID: 23468069

What does the Internet tell us about autism?

The recent 'discussions' (and continuing saga) between Dorothy Bishop and Baroness Susan Greenfield on any possible connection between Internet use and autism got me slightly hot under the collar, and no, not in a good way. The suggestion from Greenfield that our embracing of the digital world might somehow be linked to the rise in autism prevalence has been quite widely questioned, and perhaps rightly so.

Reading her piece in the New Scientist, I did however see some interesting points that Greenfield was trying to raise about how we need to have more dialogue on how technology might potentially be involved in our 'adapting' biology as it definitely is on our social and cultural world (see the recent London riots as one example). If one accepts a Darwinian version of evolution, one must accept that we are constantly adapting to the environment presented to us and that environment, physical and cultural, has changed pretty substantially over the past 100 years or so, even during the past 30 years coinciding with the technological age. A recent programme on BBC Radio 4 discussed a similar issue. Correlation however does not imply causation.

Away from that particular duel, in this post I want to briefly discuss the role of the Internet in relation to autism, from the perspective of this paper* by Reichow and colleagues recently published in JADD which sought to tell us about the characteristics and quality of autism websites. MJ over at Autism Jabberwocky has already covered this paper and I would strongly direct readers to the post (here).

Anyone who uses the Internet knows that whilst it is an incredible source of information for good, one can find misinformation and bad in equal, dare I say greater, measure. According to Google Insights for Search, the top search term for autism (aside from just 'autism') in 2011 so far is the term 'symptoms of autism'. Try typing it  in and see what you get. OK, now try and type in something like 'autism causes' and see what you get. I would wager that you probably might not be in total agreement with all the information presented to you from this particular query.

So it was with the Reichow paper, where Government sources denoted by a .gov web address were generally determined to offer the more accurate information about autism. This paper offered similar advice when using Google for more general healthcare advice. When I say accurate, I mean accurate from the point-of-view of what the professionally-accepted opinion of autism might be. Indeed this is perhaps one of the problems when information is 'graded' according to accuracy: who decides what is accurate and what is not and how do they do it?

One could perhaps see that in a widely heterogeneous condition like autism, where presentation is so varied and aetiology potentially also different in different phenotypes, universal constants might be few and far between. Combined with increasingly large volumes of research constantly being produced and perhaps overturning some of our widely-held beliefs about things like genes and environment or sibling recurrence of autism for example, you can see that accuracy is perhaps a more fluid concept than many people realise.

Whilst I am all for accuracy and science being communicated properly, I wouldn't necessarily suggest that information about autism or lots of other things be solely derived from Government or professional sources. Why? Well one need only read through the blog list at the foot of this blog to see that many other sources of information, first-person, second-person, research-based, lay opinion, can provide accurate (yes accurate) and up-to-date information which one would never get from merely towing the party line. Moreover in previous posts I have come across information which whilst from professional sources was nevertheless inaccurate and how accuracy and opinion aren't necessarily built on overwhelming evidence. No-one is infallible is perhaps the key take-home message.

One resource that I would hope will help at least here in the UK are the upcoming streams of advice to be provided by NICE. For those who are interested, here is a link to my 'NICE to see you' post from a few months back on exactly what is being looked at and how far a long things have progressed.

A feel-good tune now from the Carpenters who are on top of the World (feel free to sing along).

* Reichow B. et al. Characteristics and quality of autism websites. JADD. August 2011