"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...

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[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.

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"Further studies are required to understand links between ASD, ADHD, and gender identity..."

The findings reported by Ada Cheung and colleagues [1] provide the blogging fodder today, and specifically the observation that: "depression was prevalent in 55.7%, anxiety in 40.4%, ASD [autism spectrum disorder] in 4.8% and ADHD [attention-deficit hyperactivity disorder] in 4.3%" in an Australian adult transgender cohort.

The aim of the Cheung study was to "assess referral numbers and describe the sociodemographic and clinical characteristics"of their cohort, with specific reference to the prevalence of ADHD and/or ASD (autism). The autism 'connection' (and why I'm blogging about this research) follows quite a bit of other research suggesting that gender identity issues and/or reassignment behaviours *might* be over-represented when it comes to a diagnosis of autism (see here and see here and see here for examples). I stressed the word *might* because, so far, there is still some doubt about whether autism / autistic features is / are the more important variable above other comorbid features or comorbidity (see here). I'll also come to the idea of whether 4.8% is actually 'over-represented' or not when it comes to the autism [prevalence] numbers game shortly...

Based on data for quite a large number of individuals (N=540), researchers arrived at those pretty standout figures for various psychiatric and behavioural comorbidity being present. They use the words 'not surprisingly' when it came to the depression and/or anxiety prevalence stats garnered, and how "discrimination and difficulties accessing gender-affirming treatments" may be a contributory factor. I'd also draw your attention to the finding that: "Despite relatively high levels of education, unemployment rates of 21.3% were high in this relatively young cohort, four-fold higher than the Australian general population unemployment rate of 5–6%" as another possibility to (partly) account for some of those psychiatric features / diagnoses being reported on (see here).

So, 4.8% of the cohort with ASD. Is this a particularly high figure? Well, it depends. The authors rely on data from the Australian Bureau of Statistics (2015) which listed 0.7% as the "Australian population prevalence" of autism or ASD. I've not been able to find much more in the way of published estimates of adult autism specifically in Australia but would perhaps hazard a guess that 0.7% is likely to be an underestimate of the true autism rate on the basis of other population data for example (see here). Bear also in mind that Cheung et al also relied on "consecutive consultations between 1st January 2011 and 31st December 2016" so covered quite a long period of time period over which referral data was collected.

The Cheung study also ventures into some of the possible hows-and-whys of autism (and ADHD) being potentially over-represented among their transgender cohort. I'm not going to head too much into what these might be here because the long-and-short of it is that we don't know about possible overlapping genetics for example (although autism genes aren't necessarily just genes for autism) or even whether non-genetic factors might be at work: "it has been suggested that endocrine disruptors such as prenatal exposure to phthalates or antidepressants may be an explanation for the increase of ADHD and ASD and relationship with gender variance" (authors words not mine). Likewise whether the presence of autism or autistic traits means that someone is more or less likely to be 'socially conforming' is something that cannot be confirmed or denied in relation to gender variance at the present time.

All I will say is that more research is indicated in this area. Preferential screening for a range of developmental / behavioural / psychiatric issues is probably also implied as and when someone clinically presents for gender-related issues, in order to ensure that the care they receive is tailored specifically to them.

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[1] Cheung AS. et al. Sociodemographic and Clinical Characteristics of Transgender Adults in Australia. Transgend Health. 2018 Dec 26;3(1):229-238.

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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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Higher autistic traits in those attending transgender health services don't necessarily mean autism

There are some key messages to take from the findings reported by Anna Nobili and colleagues [1] following their examination of "self-reported autism spectrum quotient-short (AQ-short) [scores] in a transgender clinical population." Not least that when compared with a control group - "cisgender individuals" - there "were no significant differences in the number of people who presented with scores suggesting a possible diagnosis of ASC [autism spectrum condition(s)]."

OK, before heading further into the Nobili findings I think it might be worthwhile setting the scene a little. So, for quite a while now there has been some increasing interest in how autism or at least some of the traits of autism, *might* be over-represented among those presenting with gender dysphoria (see here). Gender dysphoria, according to the UK NHS Choices website is "a condition where a person experiences discomfort or distress because there's a mismatch between their biological sex and gender identity." Allied to other peer-reviewed research looking at gender identity [2], sexual preferences in the context of [some] autism (see here), and combined with quite a sweeping *theory* talking about an 'extreme male brain' in the context of autism (see here), and well, let's just say some speculation about a link between some autism / autistic traits and elements of gender and sexuality has been noted. And indeed, continues to be noted [3]...

Nobili et al - including one author who is rather central in autism research circles to the promotion of that extreme male brain theory - examined AQ responses in some 650 matched pairs (transgender matched with cisgender). Among the transgender participants: "A total of 260 people (39.6%) in each group were assigned female at birth whilst 396 (60.4%) were assigned male." It's worthwhile noting that AQ is a self-report questionnaire, and whilst heralded in several quarters as a good 'are you autistic?' screener, there are some people - including me - who have some reservations about it's 'universal' usefulness to just autism (see here and see here for examples). I'll come back to this shortly...

As per the opening paragraph to this post, the numbers of participants "indicating possible ASC caseness" did not differ significantly between the groups. So, around 33% of the cisgender control group hit a score of 70 or more on their self-report responses to the AQ compared with 36% in the transgender group. The authors did detect a statistically significant difference in possible caseness when looking at those assigned female at birth in the transgender group but not for males. A similar finding has been noted in other independent studies [4]. Nobili and colleagues however concluded that their findings were in line with other observations in adults in that: "there is no evidence of increased rates of autism in transgender populations as a whole."

Going back to my reservations around the AQ as an exclusive autism screener, I also noted something important reported by Nobili and colleagues: "High AQ scores may not be indicative of the presence of an autism spectrum condition as the difference between groups mainly related to social behaviours; such scores may be a reflection of transgender people’s high social anxiety levels due to negative past experiences." I was really intrigued by this finding and interpretation, particularly in light of other recent peer-reviewed speculation by Jack Turban [5] who suggested that: "ASD [autism spectrum disorder] symptoms [in transgender youth] may represent social deficits that are secondary to social stress and deprivation, as transgender youth suffer high rates of peer and family rejection." On a previous blogging occasion, I've also discussed research suggesting that something like a generalised anxiety disorder (GAD) may 'inflate' responses/scores on the AQ (see here). Given that anxiety is an all-too-often bedfellow accompanying a diagnosis of autism, I'd be interested to see quite a bit more study on this topic in the context of AQ use. Y'know, perhaps alongside some more formal measures of anxiety both in relation to autism and also more readily pertinent to the subject matter analysed by Nobili et al. And, outside of just anxiety, other clinical features/conditions might also be thrown into the research mix [6]. Insofar as the idea that mental health may also be a topic requiring more focus in respect of the transgender population, I'll bring to your attention some other recent research by Becerra-Culqui and colleagues [7] on this point.

There is a further scheme of work to follow in this area, and I'll be interested to see what further results turn up, particularly with regards to females assigned at birth with gender dysphoria. And since I've mentioned the AQ and (once again) my reservations, I'll direct you to another paper published in the same journal at roughly the same time as the Nobili findings, where the AQ was again 'implied' as being equal to the presence of autistic traits [8]. And yet again, another example where one has to be very, very careful about making that 'exclusively autistic traits' link...

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

[2] Cooper K. et al. Gender Identity in Autism: Sex Differences in Social Affiliation with Gender Groups. J Autism Dev Disord. 2018. April 28.

[3] van der Miesen AIR. et al. Prevalence of the Wish to be of the Opposite Gender in Adolescents and Adults with Autism Spectrum Disorder. Archives of Sexual Behavior. 2018. May 7.

[4] Vermaat LEW. et al. Self-Reported Autism Spectrum Disorder Symptoms Among Adults Referred to a Gender Identity Clinic. LGBT Health. 2018 May 9.

[5] Turban JL. Potentially Reversible Social Deficits Among Transgender Youth. J Autism Development Disord. 2018. May 12.

[6] Lugnegård T. et al. Asperger syndrome and schizophrenia: Overlap of self-reported autistic traits using the Autism-spectrum Quotient (AQ). Nord J Psychiatry. 2015 May;69(4):268-74.

[7] Becerra-Culqui TA. et al. Mental Health of Transgender and Gender Nonconforming Youth Compared With Their Peers. Pediatrics. 2018. April 16.

[8] Loureiro D. et al. Higher Autistic Traits Among Criminals, But No Link to Psychopathy: Findings from a High-Security Prison in Portugal. J Autism Dev Disord. 2018. April 12.

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