"If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead"

The quote titling this post - "If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead" - comes from a recent newspaper report by James Sinclair on the noble actions of the 16-year old Greta Thunberg, the current poster person for student activism.

Many people will have heard of Greta and her school strike for climate which snowballed into an international movement demanding action on global warming and climate change. She's subsequently been named as "one of the 100 most influential people of 2019" and could even be in the running for a Nobel prize later this year (2019). Not many teenagers can add those sorts of credentials to their CV...

Alongside the important message that Greta has spread, the revelation that she has a diagnosis of autism - Asperger syndrome - has not escaped media and indeed, social media attention. Her autism diagnosis (Asperger syndrome is now pretty much defunct as a clinical diagnosis) has, in many ways, been placed front-and-centre of her story, but not always in the politest of terms.

The Sinclair feature on Greta caught my eye for several different reasons. Diagnosed himself with autism, Sinclair approaches an important part of the Greta Thunberg story: how autism is not necessarily relevant to the important climate change message that is being promulgated. Indeed, some stand-out quotes from his article are worthwhile circulating widely: "This is why many including myself struggle with sharing our diagnosis with people, as once we do everything is viewed through a person’s past experiences and expectations of autism" and "It suggests that autism is still perceived as something we must all scramble to protect at a moment’s notice."

Why is this relevant? Well, potentially for lots of different reasons, some of which have kinda been picked up in a recent paper by Lily Cresswell & Eilidh Cage [1] which was blogging fodder (see here) not so long ago. The message then - albeit a message derived from a small participant number - was that autism is not necessarily the 'identity' that some would like it to be represented as. For example, as reported in the Cresswell/Cage result: "less than half of participants mentioned autism in their identity descriptions", inferring that many young people potentially see themselves and their achievements/struggles as so much more than due to the receipt of a clinical diagnosis. And one can perhaps see that the continual pressure to make autism a part of any successful narrative, whilst noble in intent, seemingly does little for either the individual and their personal accomplishments nor the masses, on the basis of the significant heterogeneity of autism and how autism for some means things like early mortality (see here) and lots and lots more besides. It perhaps should also be noted that depression has also been mentioned by Greta too: "After learning about climate change when she was 8, Greta later developed depression when she was 11, which she links partly to the issue" but this point doesn't seem to have been widely picked up on even bearing in mind that autism / autistic traits and depression have some important links (see here for example).

I appreciate that my ramblings about autism not necessarily being an identity for all nor not always relevant to a person's socio-political messages aren't likely to be received well by everyone. That's fine. I'll end however with comments from Greta herself and her views of autism and other labels "not being a gift." The caveat she makes to that point being that with appropriate adjustments, support and resources, there are things that can make life easier for those on the autism spectrum and beyond. Bearing in mind that is, the need for 'personalisation' of such supports and a move away from any 'one-size-fits-all' philosophy.

And whilst I'm on the topic of Greta Thunberg, it seems as though her autism diagnosis is now being dragged into the 'autism wars' too (see here). Yet another example of her important climate message seemingly being overshadowed...

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

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"Anti-vaccination arguments are varied" (and not all about autism)

I tread very carefully with my slightly long discussions of the paper by Beth Hoffman and colleagues [1] (open-access available here). The Hoffman paper talks about the role of social media in an important issue: "anti-vaccination rhetoric". Specifically how an analysis of anti-vaccination sentiment on one particular social media platform suggests that "It's not all about autism" when it comes to such views being very publicly espoused. Some people might already know why autism was mentioned by Hoffman, but for others here is some discussion of the previous (peer-reviewed) science on that topic (see here and see here).

I know that there are some significant emotions surrounding this topic. I know it's a subject area that crosses lots of different issues ranging from individual and public health to personal choice and lots more in-between. It's also a topic which in some cases is literally the difference between life and death. And for those reasons it's why papers such as the one from Hoffman et al are so important: to understand why, in the age of social media where the world is literally your audience, such sentiments might occur and how any misgivings about vaccination could be suitably addressed. How much also, the anti-vaccination messages that are being promulgated on social media, actually do impact on people's actual vaccination behaviour is another point of more general study, and specifically why this might happen more for some but not for others [2] (a 'vaccine for anti-vaccination sentiment' perhaps?).

Hoffman continued a growing theme in various research circles where social media footprints represent data (see here and see here). They specifically zoomed in on "197 individuals on Facebook who posted anti-vaccination comments on a local paediatric clinic’s Facebook page" in response to a video about "the human papillomavirus (HPV) vaccine as an anti-cancer vaccine." And before you ask, yes, the HPV vaccine does indeed seem to be an anti-cancer vaccine [3]. The sorts of comments received were sometimes pretty extreme as per "being either (1) threatening (e.g. “you’ll burn in hell for killing babies”) and/or (2) extremist (e.g. “you have been brainwashed”)." That being said, I don't want to tarnish all commentators on the basis of the posting of such extreme comments by some.

Researchers went through the posts - "all publicly available information" - of their nearly 200 selected Facebook accounts, covering material published over a 2 year period. Various codes (N=26) were used to classify the posted content, alongside "8 variables related to sociodemographic information: age, gender, location, political affiliation, marital status (yes/no), parental status (yes/no), whether employment was listed (yes/no), and whether post-secondary education was listed (yes/no)." Results were collated.

"Posts on these individuals’ Facebook profile pages suggest that many are highly mistrustful of the medical and scientific community." That was one of the primary findings. Other observations included: "Of the 116 individuals with at least one public anti-vaccination post from 2015 to 2017, posts about “educational material” (73%), “media, censorship, and ‘cover up’” (71%), and “vaccines cause idiopathic illness” (69%) were the most common topics." 'Educational material' implying "content that claims to provide scientific evidence for the negative impact of vaccines" is perhaps slightly counter-intuitive to the 'mistrust' that Hoffman initially concluded. Indeed, it implies that this isn't necessarily about a general 'mistrust' of science per se that they noticed, but rather more of a selective mistrust of some of the science and/or 'guardians' of that science. This perhaps coincides with their focus on some key weakness of science including that: (a) science is more about probability than it is about absolutes, and (b) science is not produced uniformly; such that peer-reviewed science can still be published as peer-reviewed science irrespective of how well or badly it was designed and conducted. So for example, you can provide someone with a 100 or a 1000 well-designed studies showing 'no connection' between variable X and variable Y in a statistical sense, but it only takes one study *linking* variable X and variable Y appearing in the science literature for someone to be able to say that there is some science behind a possible link between variable X and variable Y (or at least that a link can't be definitively ruled out). That's the way science works for better or worse.

Insofar as the sentiments of 'media, censorship and cover-up' this is another key issue with some overlap with the other details observed. The cries of 'cover-up' and 'censorship' "suggesting that the government, pharmaceutical companies, and/or physicians consciously and wilfully fail to disclose adverse vaccine reactions" play into lots of different themes allied to the previous discussion about science and beyond. Whilst not wishing to stray too far from the Hoffman findings, I'll bring in some quite recent discussions about the whole Cochrane-Gøtzsche saga (see here) as one relevant example. I don't want to rehash that post in its entirety but the Jørgensen paper [4] including Peter Gøtzsche as an author which concluded that "The Cochrane human papillomavirus (HPV) vaccine review missed nearly half of the eligible trials" provides an example of how science again isn't necessarily always as uniform as it appears. On that basis, and with other medical commentators also concerned about clinical trial data not seemingly appearing in a timely fashion for example (see here) alongside some recent quite high-profile judgements (see here), the gaps left provide fertile ground for social media speculation and onward the stoking of potential anti-vaccination comments.

Hoffman et al also talk about various strategies that might be employed to "increase the level of community protection against the propagation of anti-vaccination messaging on social media." Personally I'm not sure whether things like increasing media literacy, the use of entertainment narratives and/or "for medical professionals to be more active on social media" and more [5] are really going to make any significant inroads into changing (often entrenched) hearts and minds. I'm even more doubtful that blanket 'censorship' is an entirely appropriate course of action, despite that being on the cards (see here) precisely because it may play directly into the hands of those cries of censorship.

There is however one thing that I think could be worth looking further into: dialogue. Minus any sweeping generalisations about equating anti-vaccination sentiments with anything else, most people here in Blighty will know about the history of Northern Ireland. Years and years of arguments, fighting, murders and more weren't solved by censorship (I remember the days when the voice of Gerry Adams was banned) but rather by talking and having constructive discussions. It was an unpalatable process for some people, particularly those who were personally touched by the violence in Northern Ireland, but dialogue happened and lives were probably saved as a result. I know some people would find the idea of talking to prominent people with anti-vaccination views likewise to be a difficult prospect. But the truth of the matter is that we're never going to get to the core of why people believe what they believe and say what they say without asking them about what motivates their view(s). It's kinda been done a little bit before in the peer-reviewed science arena and beyond but lots more data is required. And it appears that such 'dialogue' has been suggested by others too...

I'm also minded to mention that part of that dialogue needs to include discussions about 'experience'; something that could also be an important variable when it comes to vaccine hesitancy and its propagation among specific groups (see here and see here). Indeed, a realisation that those who express anti-vaccination views or opinions probably include many different people who arrived at their position for lots of different reasons is an important point. Probably not all of them having some inherent disposition to being anti-vaccination or indeed necessarily "in favour of magical or superstitious thinking" [6] as others have previously opined. Opening dialogue is a difficult prospect but if it saves one life from a vaccine-preventable disease, it's got to be worth a try.

Vaccination is a cornerstone of public health, a life-saving cornerstone of public health, something that should never, ever be forgotten. Indeed it's probably because people forget what measles for example and other childhood disease did to some children and adults that some complacency about vaccination has set in. If you need to see some of the effects of vaccine-preventable diseases in action, read about what measles did to the author Roald Dahl's daughter (see here). Anti-vaccination sentiment is a significant issue that has been with us since vaccination began. It needs to be approached head on to counter mis-information and calm and allay any fears. The way to tackle this issue is however going to be as complicated as the issue itself is. Yes, it needs to realise that social media is often an 'echo chamber' [7] giving people an opportunity to literally speak their mind and adapt accordingly. But another part of that strategy - an important part of that strategy - needs to be an understanding of why people think the way they do. In that respect, dialogue, however unappealing that might be to some people, is eventually going to be key...

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[1] Hoffman BL. et al. It's not all about autism: The emerging landscape of anti-vaccination sentiment on Facebook. Vaccine. 2019 Mar 14. pii: S0264-410X(19)30303-2.

[2] Zhang EJ. et al. Influence of political and medical leaders on parental perception of vaccination: a cross-sectional survey in Australia. BMJ Open. 2019 Mar 26;9(3):e025866.

[3] Palmer T. et al. Prevalence of cervical disease at age 20 after immunisation with bivalent HPV vaccine at age 12-13 in Scotland: retrospective population study. BMJ 2019; 365.

[4] Jørgensen L. et al. The Cochrane HPV vaccine review was incomplete and ignored important evidence of bias. BMJ Evid Based Med. 2018 Oct;23(5):165-168.

[5] Gesualdo F. et al. To talk better about vaccines, we should talk less about vaccines. Vaccine. 2018; 36: 5107-5108.

[6] Bryden GM. et al. Anti-vaccination and pro-CAM attitudes both reflect magical beliefs about health. Vaccine. 2018 Feb 21;36(9):1227-1234.

[7] Schmidt AL. et al. Polarization of the vaccination debate on Facebook. Vaccine. 2018 Jun 14;36(25):3606-3612.

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

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

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

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

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

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

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

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

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

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

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

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A puppet portrays the character of Laurence, who is described as “autistic, non-verbal and occasionally violent”

The title heading this non-sciencey post - "A puppet portrays the character of Laurence, who is described as “autistic, non-verbal and occasionally violent”" - comes from a news report discussing a play opening soon at a London theatre. The play is called 'All In A Row' and I believe centres on a family struggling to care for their son who is autistic. I believe the play specifically focuses on "the night before social services finally intervenes"...

That news item centres on the use of a puppet to depict Laurence and how writers arrived at such a decision on the reported basis that "We don’t think we could get informed consent from a non-verbal autistic actor aged 11 to play the role." Needless to say that the old tenet about not pleasing all of the people all of the time came into play, as "a backlash online" developed. Despite some initial input from the National Autistic Society (NAS) around "accuracy" and "representation" of autism in the play, they eventually decided that they couldn't support the play "particularly the use of a puppet to depict the autistic character alone."

I was a little surprised by the NAS stance on this. Surprised because when another puppet character came into being depicting autism, the NAS was a little more 'positive' on its introduction. That character was Julia "a little girl who also has autism" who appears on Sesame Street. And at the time of her introduction, the head of the NAS was reported as saying "his organisation hopes it will "inspire" other creators to include characters with autism in their work." Well it might have done, but what's the difference between Laurence and Julia, and why the different response?

I don't have any divine insight as to why the different response, but let's have a look at a few 'possibilities'.

Both puppets appear in productions that also include real-life actors, so this is not about the setting in a character-sense. The look of the puppets? Well, Julia has the typical muppet features: warm skin tone, big eyes, mouth inclined to a smile. A typical 'Anything Muppet'. Laurence is quite a bit different. More human in features, a much less warm skin tone, and eyes that can only be described as piercing. There's quite a physical difference between them. So could this be about that physical difference between the puppets?

Depiction is another factor to potentially consider. Outside of the 'autistic, non-verbal and occasionally violent' description, we are also told that "Laurence likes pizza. Laurence is about to go to school. Laurence thinks it’s okay to wee on mummy’s pillow." Allowing for the age difference in intended audiences between Sesame Street and All In A Row, I think you can see some potential differences between how autism is being depicted by Julia and Laurence. Indeed this perhaps ties into another part of the the NAS response about the use of Laurence: "we could not support the play overall due to its portrayal of autism." The question therefore is whether the depiction of autism including physical violence for example (something that has recently been enshrined in English educational law with autism in mind) is a reason for the 'backlash'? Is this more about PR than anything else?

I think what many people forget (or don't want to remember!) is that autism is a very, very heterogeneous spectrum. It describes so much human experience under one banner. There are no doubt many children who fit the Julia description of autism. Fairly quiet, wouldn't hurt a fly, thriving in some areas yet struggling in others. On the other hand, there are also children who probably better fit the Laurence description of autism: 99% of the time like Julia but also prone to aggressive outbursts (against themselves and also others) and sometimes challenging in their behaviour. The trend to show the world the Julia children over the Laurence children is quite pronounced in some quarter these days. It's also accompanied by online 'abuse' of parents and guardians who dare to show / talk about their 'challenging' children and their reality (see here). Indeed, social media is full of parents showing the good and not-so-good side of their kids, but if your child has autism / is autistic it seems some people think you're not entitled to do the same? Sounds like discrimination to me. Such sentiments have also probably partly contributed to the formation of a society that focuses on "the burgeoning population of children and adults affected by severe forms of autism or related disorders." Even that society attracted criticism (see here) despite, as far as I can see, some noble goals around healthcare and vocational options which may well benefit everyone on the autism spectrum. Like I said "not pleasing all of the people all of the time."

Finally, the word 'dehumanising' is used quite a bit in that news report: "a negative narrative of dehumanising" and "literally dehumanised the identity you sought to represent." My question: does Julia, as a puppet, also dehumanise autism? Because surely if the charge is levied against Laurence as a puppet, then Julia as a puppet also fits the bill too? And if so, perhaps the media need to come up with other ways and means of getting more characters with autism on the screen (see here) to depict the wide range of behaviour covered under the [currently] singular term of autism...

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"no good evidence that time in front of a screen is "toxic" to health"

BBC News January 4 2019

Quite a few days back the BBC here in Blighty ran the headline "Worry less about children's screen use, parents told" as part of their coverage of the paper by Neza Stiglic & Russell Viner [1]. This paper - "a systematic review of reviews" no less - set out to "systematically examine the evidence of harms and benefits relating to time spent on screens for children and young people’s (CYP) health and well-being, to inform policy."

Informing policy is just what the Stiglic/Viner paper did (see here), as the Royal College of Paediatrics & Child Health (RCPCH) concluded that: "Many of the apparent connections between screen time and adverse effects may be mediated by lost opportunities for positive activities (socialising, exercise, sleep) that are displaced by screen time" but parents shouldn't necessarily get too stressed if their offspring find some enjoyment in their computer/tablet and/or phone in amongst their busy lives. Indeed it was refreshing to see that children and young peoples' voices were being heard on the potential benefits of screen time, with comments such as: "Gives you knowledge" and "Provides you with more opportunities to reach a wider community." All those hours of watching You Tubers fooling around or building whatever on Roblox or similar platforms can actually be intermixed with something approaching gaining knowledge; i.e. learning. Who knew!

The Stiglic/Viner review paper drew on data from 13 reviews reporting "associations between time on screens (screentime; any type) and any health/well-being outcome in CYP [children and young people]." All was not however completely rosy when the reviews were boiled down to a consensus, as we are told that authors found "moderately strong evidence for associations between screentime and greater obesity/adiposity and higher depressive symptoms" and "moderate evidence for an association between screentime and higher energy intake, less healthy diet quality and poorer quality of life." I don't think anyone should really be surprised that more screen time *might* mean an increased tendency towards being overweight or obese. If one subscribes to the idea that energy in - energy out is at least partially related to being overweight or being obese [2] it stands to reason that unless people are running around whilst using their tablets or phones, there is likely to be less 'energy out'.

As for the 'higher depressive symptoms', well let's just say that this is something else that is no stranger to the debate about screen time, as other recent research has similarly observed (see here). Whether it is the actual use of tablets, phones and/or television or the type of material being accessed [3] *correlating* with depression is a question that needs further investigation. I might add that the scenario of when screen time turns into an addiction also needs to be discussed in this context (see here), bearing in mind the limitations of observational studies in relation to discerning cause-and-effect.

Also: "There is weak evidence for association of screentime with behaviour problems, anxiety, hyperactivity and inattention, poorer self-esteem and poorer psychosocial health in young children." Bearing in mind that 'weak evidence' does not mean 'no evidence', this part of the Stiglic/Viner review paper is also important. It means that sweeping conclusions that screen time is somehow playing a major role in the rise of behaviour problems in children (young and old) are not yet necessarily backed up by the scientific evidence. Indeed, as per other topics on this blog, I'd advance the position that certain facets of screen time may actually be advantageous to quite a few children and young people (see here) who are perhaps not for example, the social butterflies that other children are.

The Stiglic/Viner review and subsequent RCPCH advice does not say that screen time for children is risk-free. It does not say that parents shouldn't be continually asking questions about how long their children spend using screens and/or what material they are accessing. It does however mean that, on the basis of the currently available evidence, parents shouldn't get too stressed about moderate screen use in their offspring. Balance things out with the odd physically active inclined hobby or two (avoiding any tiger parenting notions) by all means, but don't stress too much about their swiping. See the potential positives as well as the potential negatives of screen use, and remember that screen time is an inevitable part of growing up these days...

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[1] Stiglic N. & Viner RM. Effects of screentime on the health and well-being of children and adolescents: a systematic review of reviews. BMJ Open. 2019;9:e023191.

[2] Malhotra A. et al. It is time to bust the myth of physical inactivity and obesity: you cannot outrun a bad diet. Br J Sports Med 2015;49:967-968.

[3] Kelly Y. et al. Social Media Use and Adolescent Mental Health: Findings From the UK Millennium Cohort Study. EClinical Med. 2019. Jan 4.

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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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"Twitter Bots and Russian Trolls Amplify the Vaccine Debate": Blame content pollutors first and foremost

"Nyet Comrade"

I'm slightly outside of my comfort zone when talking about the findings reported by David Broniatowski and colleagues [1] which has been reported in the lay media with headlines such as: "Russian trolls 'spreading discord' over vaccine safety online".

Outside of my comfort zone not just because this topic is one on the periphery of the core material of this blog (see here and see here for examples) but also because I've long held the belief that this blog should be apolitical and areligious. There are plenty of other outlets online to satisfy such needs these days. To reiterate, the typical currency on this blog is peer-reviewed science and science really should be free from politics, religion and 'allegiance'.

But here I am talking about a paper titled: "Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate" and a study which did mix science with politics. Indeed, a paper which seemingly complements a whole debate on how social media in particular, really is the mouthpiece of the masses in a global sense, but at the same time, is a media ripe for 'promoting discord'.

Set within the reality that people say pretty much anything and everything on social media and that you don't really know who you're 'socialising with' when using such resources (ever heard of 'stranger danger'), Broniatowski et al set about looking to "understand how Twitter bots and trolls (“bots”) promote online health content." The specific online health content they were interested in was "vaccine-relevant messages" as part of a scheme of work previously undertaken by some of the authors. On this occasion, they looked at well over a million tweets over a 3 year period (2014-2017) and "estimated the likelihood that users were bots, comparing proportions of polarized and antivaccine tweets across user types." They also "conducted a content analysis of a Twitter hashtag associated with Russian troll activity."

Results: "Compared with average users, Russian trolls..., sophisticated bots..., and “content polluters”... tweeted about vaccination at higher rates." Researchers observed that 'content pollutors' - "bot accounts that distribute malware, unsolicited commercial content and disruptive materials" tended to post more 'anti-vaccine content'. One would assume this was because their aim is to 'distribute malware and related materials' and by posting such provocative material, it is more likely to get people to click 'their way'.

Also: "Whereas content polluters posted more antivaccine content..., Russian trolls amplified both sides." Bearing in mind that the overall numbers of those tweets from accounts linked to that Twitter hashtag with Russian activity was small, very small, as a percentage of the whole dataset - "the researchers found 253 tweets containing the #VaccinateUS hashtag among their sample" - their content was more mixed - "43% were pro-vaccine, 38% were anti-vaccine, and the remaining 19% were neutral" - if not actually more likely to be pro-vaccine or neutral. The authors interpret this by saying "its messages were more political and divisive."

I have to say that I'm left slightly unimpressed with the interpretation being made from the Broniatowski data. I'm not quibbling with the idea that: "Accounts masquerading as legitimate users create false equivalency, eroding public consensus on vaccination" or that "More research is needed to determine how best to combat bot-driven content." Yes, social media typically does not typically have many filters ('evidence-based' or otherwise) and that is a downside to the content that users are exposed to.

But the whole 'Russian trolls' promoting 'discord' and being 'divisive' thing seems to be built on fairly flimsy evidence at best. I say this on the basis of the small number of tweets from those Russian troll accounts and the majority direction of their stance with regards to vaccines (neutral if not pro-vaccine in the majority). The bigger story here is the continued effects of 'content pollutors' and how, through their attempts to spread their 'mal-wares', so vaccination policy is being potentially undermined as a result. I say all that wearing the objective blinkers of science and recognising that I am not affiliated to any particular political group, red or otherwise.

I know there's something of an obsession these days about how 'social media is being used to subvert democracy', and how the population at large are somehow unable to form their own opinions as a function of 'what social media says'. Personally, I've always felt such sentiments belittle people, and indeed, say more about those who subscribe to such 'control' ideas than those who are actually exposed to them.

It's also interesting that, outside of the continuing search - often a desperate search - for examples of how Russia is somehow trying to 'take over the world' (😏), mention of the word 'vaccine' in the paper from Broniatowski and colleagues, taps into another topic which can ruffle feathers. I shouldn't really need to emphasise how important vaccines are as part of the modern-day medical arsenal (read Roald Dahl's account if you need more evidence of this). But there does seem to be a general feeling that if one even mentions something that distracts from the life-saving message about vaccines, one becomes persona non grata in certain quarters. Y'know, like the idea that for some groups - "immunodeficient individuals are more likely to develop complications resulting from live-virus vaccines" - vaccination might not be potentially advantageous, or how side-effects, rare as they are, can occur: "Within 48 hours after immunizations... the patient developed a fever to 38.9°C, inconsolable crying, irritability, and lethargy and refused to walk." By linking Russian trolls to social media posts about vaccination, it's not difficult to further 'demonise' various groups of people; and with it, 'pull in' (mainly) parents, some of whom are not 'anti-vaccine' but rather, have some genuine concerns about the potential effects of vaccination on their children (see here)...

And just in case anyone needs any advice on vaccination, there are lots of helpful resources around (see here and see here).

Update: 25 August 2018. The Broniatowski paper is open-access (see here).

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[1] Broniatowski DA. et al. Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate. AJPH. 2018. Aug 23.

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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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Headline fail: "Autism traits could be 'edited' out genetic trial suggests"

The Telegraph June 25 2018

"Autism traits could be 'edited' out genetic trial suggests" was one of the headlines that accompanied the publication of the findings by Bumwhee Lee and colleagues [1].

The Lee article details some interesting science following the use of something called CRISPR-Cas9 gene editing (see here) or more precisely the use of a new-ish development to this technique - "CRISPR–Gold, a nonviral delivery vehicle for the CRISPR–Cas9 ribonucleoprotein." CRISPR is one of the hottest things in science at the moment, as the words 'find, cut and paste' move to a genetic level (see here) and promises so much. In the Lee study, the target was the metabotropic glutamate receptor 5 (mGluR5) gene as a move to "efficiently reduce local mGluR5 levels in the striatum."

Oh, did I also mention that this research was done using mice? Indeed, this was a study of mice engineered to display some of the molecular and behavioural characteristics of a condition called Fragile X syndrome (FXS). As such, authors reported that the use of CRISPR-Gold injections into the striatum of said FXS mice correlated with a reduction in certain behaviours such as obsessive digging and leaping into the air. The authors opine that such behaviours 'overlap' with those noted in autism (FXS has a 'connection' to autism) and voilà, a link to autism is made.

Aside from that brief overview of the findings from Lee et al just mentioned, I'm not going to go too much into the nitty-gritty of the actual results. A cobbler should stick to his last and all that, and others have done a far better job than I ever could in discussing the science (see here). I do however want to make a case that the 'autism traits could be edited out' headline represents a fail when covering the Lee findings.

I say 'headline fail' in the title of this post because well, it is. Not only does it assume that obsessive digging and sporadic leaping into the air made by mice are singularly autistic traits, it takes a few sentences before the word 'mice' is even mentioned in the coverage. I've talked before about the caution(s) needed when translating animal findings to real people (see here) and how autism in particular, seems to be a label ripe for mass sweeping generalisations from 'autistic animals' to autistic people. I'm not saying that some of the features of autism are uniquely human (see here) but rather that is it premature to even imply that the traits of autism can be 'edited out' on the basis of a single mouse or other animal genetic study.

I've already mentioned about a 'connection' between FXS and autism but it is perhaps also important to realise that there seem to be many routes that bring someone to a diagnosis of autism. FXS is one condition that manifests autistic traits but it is not the only one and certainly science does not yet know everything there is to know about the genetics of autism and FXS. And just before anyone starts talking about autism being universally 'in-born' and 'genetic' as it is [assumed] in FXS, well, the peer-reviewed research evidence might just disagree with you (see here for one example)...

Finally there's another aspect to this work that requires sensitive media handling: the ethics of 'editing out' autistic traits. I know this is a 'hot potato' area, as an increasingly vocal - certainly on social media - group of people on the autism spectrum talk about their strengths as well as their disabilities. Much of this discussion is framed around the notion that autism is not something separate from who they are but rather a fundamental part of who they are. If one takes this viewpoint, it is logical to assume that 'editing out' autistic traits might mean something rather ominous to some people...

The point I'm trying to get across is that the Lee paper is seemingly good science. It faithfully reported the results of an exciting new technology that holds promise for many different labels, conditions and diseases (see here). The issue however, is that the reporting of such research needs to be accurate and responsible. Headlines in particular, need to mention the word 'mouse' if it was a mouse study. They need to avoid sweeping generalisations that infer that digging and leaping behaviour in animals are generalisable as autistic traits (certainly the latest ICD-11 schedule says nothing about such behaviours), and they need to be sensitive to the fact that 'editing out' may very well provoke significant anxiety among some people on the autism spectrum. All for the sake of an attention-grabbing headline...

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[1] Lee B. et al. Nanoparticle delivery of CRISPR into the brain rescues a mouse model of fragile X syndrome from exaggerated repetitive behaviours. Nature Biomedical Engineering. 2018. June 25.

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