"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...

----------

[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.

----------

"his sudden interest in changing gender may have been another of his autistic obsessions"

A recent (online) newspaper report from here in Blighty included the quote used in the title of this post: "his sudden interest in changing gender may have been another of his autistic obsessions" (see here).

The report describes how a male - born biologically male - teenager diagnosed with autism expressed an opinion that "he believed he was female" and how his opinion was received by his parents and other professionals. Differences in the reception and perception of that opinion eventually led to some 'frustration' and, worryingly, the eventual intervention of social (child) services.

I decided to blog about this report primarily because (a) it ties in with some important peer-reviewed science discussions about gender identity and autism (see here and see here), and (b) there is a distinct possibility that the headline accompanying the report - "Social services threaten to take autistic boy into care after his parents refuse to let doctors give him powerful sex-change drugs" - is likely to be replicated again. Such a headline also taps into some wider debates about an increasing number of children talking about their gender and the decision-making rights and abilities of children both on and off the autism spectrum.

First things first, I know there are lots of strong opinions about sex and gender and 'what's right for children' these days. I don't offer an opinion either way nor do I claim to be an expert on issues such as gender dysphoria - "where a person experiences discomfort or distress because there's a mismatch between their biological sex and gender identity" - or gender reassignment or related issues. As mentioned, I'm interested in the science behind such discussions because autism has been discussed, on more than one occasion, as being potentially 'over-represented' among those with gender dysphoria [1] and/or wanting to/going through gender reassignment services. I say 'potentially over-represented' but wouldn't want anyone to think that any scientific debates have been settled at the current time: they haven't [2] (see here). I'm also interested in this topic because, aside from any gender reassignment issues, autism not so long ago was faced with something called the 'Lupron protocol'. Then leuprorelin, a drug sometimes used to 'delay puberty', was touted as something important to autism for very, very different reasons. I might add that the story of such a 'protocol' did not end well, as words like 'chemical castration' were banded around (see here).

I selected the quote that heads this post because it strikes me that there are some 'unique' issues that arise in the context of autism being mentioned alongside gender dysphoria and/or reassignment. Issues that don't seem to have been properly considered at the time of writing. Indeed, when I first tweeted about the source article for this post, a couple of response summed up the positions taken. First: "That child is not a boy. She is a girl and she needs the medical transition that will treat her dysphoria and allow her to live her best life." Another response was from someone who is themselves autistic and mentioned an important word: 'impulsivity'. Indeed, the article itself also mentions some similarly important phrases which require consideration. So: "they [his parents] suspected his abrupt decision to change sex was a result of his autism" and "All we were doing was trying to get him to pause and think about his actions" and "The school and social workers took what our child said as gospel. But considering he has autism, his perception of social scenarios is seen through an autism lens." An autism lens?

As you can see, a lot of those quotes/opinions focus on the idea that the traits that stem from or follow autism are potentially important to this debate. Minus any 'pity me' sentiments, they imply for example, that autism confers some specific 'vulnerability' that cannot simply be brushed under the carpet particularly when a person makes, or wants to make, important, potentially life-changing, decisions. I've talked about the issue of vulnerability and autism before on this blog (see here and see here) with some equally life-changing issues in mind. The topics differ but the sentiments remain the same. It's highly likely that the parents discussed in that news report know a little a bit about such vulnerability and autism purely in the context of raising their offspring.

Such vulnerability does however have to be balanced with individual rights; that is the rights of an individual to make important decisions that affect them. Such decisions might not always be 'the correct ones' or the ones that significant others necessarily want them to make but nonetheless, still need to be valued particularly within the context of assumed competence (see here). Indeed I get the impression that it's the possibility that the child has expressed an opinion with future consequences - "My biggest worry as a mum is my child gets pushed down this route, becomes a woman, goes through the surgery, then gets to 25 and says, “I’ve made a mistake.”" - that seems to worry the parents in the news report more than anything else. The use of the word 'surgery', implying the degree of 'invasiveness' needed and potentially also inferring 'irreversibility', is perhaps also an important part of their response.

What else? Well, without heading too far into scientifically unexplored territory I think there are other issues that come into play in such a scenario. Going back to the comment on impulsivity and the 'abrupt decision' talked about in the article, another important (and contentious) issue is potentially introduced: rapid-onset gender dysphoria (ROGD) [3]. ROGD is something that is not well-liked in some quarters (see here) and still remains a topic of some (heated) discussion (see here). It defines a state whereby "teens and young adults who did not have symptoms of gender dysphoria during childhood but who were observed by their parents to rapidly develop gender dysphoria symptoms over days, weeks or months during or after puberty." I don't make any comment on the rights or wrongs of something like ROGD but would encourage further study. Specifically with autism in mind and on the basis of the case being reported, questions like: 'how abrupt was the decision?' (or was the decision taken many moons ago but just communicated recently?) are important. Whether those who are diagnosed with autism or present with significant autistic traits are 'over-represented' among cases of ROGD is another research question that perhaps needs considering. And then there's the possible question of why?

Ultimately there are no easy answers to the issue described in today's post despite some significant strength of feeling. What will help however, is research; good quality research that is not afraid to test difficult hypotheses. And whilst individuals should always be empowered to make decisions for themselves, there should always be an appreciation that decision-making typically does not occur in a vacuum...

----------

[1] Janssen A. et al. Gender Variance Among Youth with Autism Spectrum Disorders: A Retrospective Chart Review. Transgend Health. 2016 Feb 1;1(1):63-68.

[2] Nobili A. et al. Autistic Traits in Treatment-Seeking Transgender Adults. J Autism Dev Disord. 2018. April 13.

[3] Littman L. Rapid-onset gender dysphoria in adolescents and young adults: A study of parental reports. PLoS One. 2018 Aug 16;13(8):e0202330.

----------

The positives of ADHD?

I tread carefully with my discussions of the paper by Jane Ann Sedgwick and colleagues [1] talking about "insights into positive human qualities, attributes or aspects of ADHD [attention-deficit hyperactivity disorder] that can support and sustain high functioning and flourishing in ADHD life." Carefully because, just like discussions over another label closely associated with this blog, there are a myriad of different views and opinions about the way neurodevelopmental disorders / conditions / labels are presented and viewed by those who have been diagnosed with them. Who am I to tell someone what they should or shouldn't be thinking?

Sedgwick et al started from the idea that although 'disorder' is a defining part of ADHD, the subsequent focus on 'deficit' does not perhaps do justice to all that is included under the diagnostic term. They reference 'positive psychology' and its moves "away from a deficit-focused view of mental health, towards approaches that were more enabling, strength-based and emphasised positive aspects of human functioning and flourishing (i.e. positive emotions, engagement, relationships, meaning and accomplishment)." They then move to the aim of their study: "to explore ability and disability in ADHD from the participants own perspective using the WHO International Classification of Functioning, Disability and Health (ICF) framework." Mention of the WHO ICF framework also brings me back to similar discussions with autism in mind (see here).

"We recruited six successful (i.e. HF[high-functioning]-ADHD and flourishing) adult males aged between 30 and 65 years from an NHS tertiary service in London." Said participants were interviewed with questions such as: "(1) What do you think are the advantages and disadvantages of having ADHD? (2) Please describe a time when you felt that your ADHD helped to achieve something? (3) What aspects of your ADHD would you miss if it went away?" Following some content analysis of results, certain themes emerged.

"The main findings of this study are characterised by six core themes (cognitive dynamism, courage, energy, humanity, resilience and transcendence)." Alongside, a number of sub-themes were also reported including "divergent thinking, hyper-focus, nonconformist, adventurousness, self-acceptance and sublimation." Researchers concluded that because these themes and sub-themes were not listed as "sanities in positive psychology" (i.e. "relevant to people in general, with or without ADHD") they *might* be specifically linked to ADHD.

OK, a few steps back. You'll no doubt recognise that this was research based on interviewing six men with ADHD (and 'flourishing' with their ADHD at that). It's not difficult to see how the issue of 'representativeness' might be a particular problem with the Sedgwick results. If for example, they had presented data from their six participants compared with another six who perhaps weren't described as 'flourishing' (see here for one possible example), I'd be a lot more confident in their findings. Better than that would have also been the views of a few other participants representing other labels where ADHD is part-and-parcel of a more complicated clinical picture (see here and see here for examples). And don't forget their focus on one gender/sex too...

I can see how something like 'cognitive dynamism' conceptualising "ceaseless mental activity" could be seen as a double-edged sword when it comes to ADHD. Yes, it can be utterly disabling for some (many) in terms of being "scattered, chaotic and a bit random." But in some scenarios and with the right environment and encouragement, such an issue could be a lot more positive a trait to have. Likewise the concept of 'energy' whilst quite synonymous with ADHD, probably also has an upside as well as a downside, particularly when harnessed to the benefit of the person concerned and their strengths.

But... I have some difficulty with the ideas that courage, humanity and resilience for example, are somehow to be viewed as 'the positive side of ADHD'. There are plenty of people out there who demonstrate such strengths without a diagnosis of ADHD or indeed, a diagnosis of anything. The fact that Freud and Nietzsche are also referenced in relation to some of those terms suggests to me that the authors have perhaps moved slightly outside of the evidence-based arena in some of their interpretations of their findings. Similarly, the use of the term 'divergent thinking' isn't exactly what I would call science-based either, as my 'neurotypical' brow starts to furrow (see here).

I appreciate what the authors have tried to do with this paper: reaching out "to people with lived experience of ADHD: service users, patients, family members, carers, partners, to say that not all symptoms of ADHD are maleficent." It's admirable that such thinking is there, particularly when a diagnosis of ADHD can seem such a daunting prospect both in the short- and long-term (see here). I'm slightly concerned however that this paper seems to be insinuating that a clinical diagnosis of something like ADHD should be used as a framework to 'psychologise' someones life. The inference being that because ADHD undoubtedly affects many aspects of a person's life, it is something that defines them and all their behaviour(s) and attitude(s) on many aspects of life. I've seen it before in other labels too as diagnosis morphs into identity.

Personally, I don't think anyone should be defined by their clinical or related label in the same way that sex/gender, skin colour, religion or politics shouldn't define a person. It's OK to say yep, I have ADHD and it affects my life in this way or that way, and this is what I need to help overcome such issues. But I'm not convinced that adopting an 'ADHD identity' and seeing all the positives and negatives of life as part of that diagnostic identity is particularly good for anyone. A person is defined by their actions not their [diagnostic] label...

----------

[1] Sedgwick JA. et al. The positive aspects of attention deficit hyperactivity disorder: a qualitative investigation of successful adults with ADHD. ADHD Attention Deficit and Hyperactivity Disorders. 2018. Oct 29.

----------

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.

----------

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

----------

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...

----------

[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.

----------

"... and now believe their pet has canine autism"

A recent tweet from the account of one of the most popular TV breakfast shows here in Blighty made some waves (international waves no less) for a couple of reasons. Leaving aside the insinuation that vaccination *might* correlate with certain behavioural changes in domestic pets, the idea that autism might not be something exclusive to humans was also implied from said tweet.

Needless to say that quite a few people took exception to the idea of 'canine autism'; even the British Veterinary Association (BVA) insisted that "there is currently no scientific evidence to suggest autism in dogs." But is that actually scientifically accurate? And more widely, is it possible for a non-human to have autism or present with significant autistic features?

Before progressing through the evidence around this question, I think it's worthwhile getting a few things straight. First, I appreciate that whilst autism is a label or diagnosis denoting a set of behavioural characteristics that 'significantly impact on day-to-day life' according to current diagnostic schedules, it's also a label of identity for some people. One therefore needs to be sensitive to the effect that discussions about animals also potentially 'having that label' would have to those who associate with an autistic identity. Second, there is a long, very long, history in peer-reviewed research circles, where animals have been used to model aspects of autism. Take for example, the increasingly important research emerging on a role for prenatal valproate exposure as a route to potentially increasing the risk of autism and other neurodevelopmental conditions being diagnosed (see here); an area that has also included discussions of a valproate-treated rodent model of autism (see here) being used in research. Of course, one needs to be aware that modelling autistic features in animals is not the same as autism and all its complexity presenting in humans (including the idea that autism rarely appears in some sort of diagnostic vacuum) and the resulting 'logical fallacies' that can arise (see here). But the assumption is that elements of certain core features of autism can potentially present in non-humans too, and could provide important clues as to the underlying nature of autism.

Going back to that 'no scientific evidence' statement made by the BVA in the lay press, you might be surprised to hear that actually, dogs have been the topic of some research interest in relation to their presenting with some of the features of autism. In an article titled: 'Can Dogs Have Autism?' some of that research was discussed. Starting from an article published way back in 1966 [1] observing behaviour in a dog "resembling human infantile autism" up to more recent peer-reviewed studies [2], several commentators have speculated on facets of autism being present in certain dogs and perhaps being more readily presented in certain breeds of dog. I've actually covered this topic previously in another post on this blog (see here) based on other research [3] reporting on shared biochemical parameters noted in some children and some canines: "tail-chasing Bull Terriers." This, on the basis that from a behavioural and biological point of view, humans are not a million miles away from canines and vice-verse. In short, there is a small scientific evidence base pursuing the notion that facets of autism may present in non-humans too.

Minus too many deep, philosophical musings about our relationship with animals and any evolutionary *connections* between human and animal behaviours, this topic did get me thinking about quite a few other things. It got me wondering whether there may be other behaviours and/or behaviourally-defined conditions / labels that are readily diagnosed in humans but that might also present in non-humans too. I also started to wonder about the myriad of animal-assisted 'interventions' that have been mentioned with autism in mind down the years (see here) and whether other possible research connections could be made as a result. Are we being too presumptuous by saying that the essence of autism is a uniquely human state?

And without trying to trivialise or make light of what autism means to many, many people, there is a long history of speculation when it comes to cats and autism...

----------

[1] Fox MW. A syndrome in the dog resembling human infantile autism. J Am Vet Med Assoc. 1966 Jun 1;148(11):1387-90.

[2] Zamzow RM. et al. Characterizing autism-relevant social behavior in poodles (Canis familiaris) via owner report. J Comp Psychol. 2017 May;131(2):139-149.

[3] Tsilioni I. et al. Elevated serum neurotensin and CRH levels in children with autistic spectrum disorders and tail-chasing Bull Terriers with a phenotype similar to autism. Transl Psychiatry. 2014 Oct 14;4:e466.

----------