Saturday, June 20, 2009

Dutch Study Finds Autistics Might Be Overrepresented Among Trans People

A recent article on Left Brain/Right Brain summarized this study presented at the International Meeting for Autism Research (IMFAR), which screened children and teens referred to the Amsterdam Gender Identity Clinic between April of 2004 and December of 2007 for autistic features. This screening included "a psychodiagnostic assessment, interviews with the child[ren] or adolescents, interviews with the parents about developmental history and current functioning, and information from the teacher." With youngsters already diagnosed with an ASD, researchers used a Dutch translation of Lorna Wing's Diagnostic Interview for Social and Communication Disorders, 10th revision (DISCO-10).

The DISCO series of diagnostic interviews, which I hadn't heard of before seeing this article, focus on early developmental history and are conducted between the diagnostician and the potentially autistic person's parent or other caregiver. It is used not so much to diagnose autism as to uncover "the pattern over time of the skills and impairments that underlie the overt behaviour."

In Chapter 28 of the Handbook of Autism and Pervasive Developmental Disorders, which describes and evaluates all the different tools available for diagnosing autism, Catherine Lord and Christina Corsello say:
[T]he first version of the DISCO was developed to assess the pattern of development in individuals with ASDs and their individual needs (Wing et al., 2002). The primary purpose of the DISCO is not to provide a diagnostic classification. Rather, the instrument was designed to obtain information on behaviors relevant to autism for the purpose of assisting clinicians in determining a child's development in different areas as well as his individual needs (Leekam, Libby, Wing, Gould, & Taylor, 2002). It is based on the concept of a spectrum of disorders rather than categorical diagnoses.

The DISCO is an investigator-based interview in which the interviewer asks questions designed to elicit descriptions of behavior and makes coding decisions based on the information provided. ... The DISCO includes items covering behavioral manifestations of the deficits associated with ASDs, including social interaction, communication, imagination, and repetitive activities. In addition, it includes items designed to assess developmental levels in a variety of domains. Many of these items are based on the Vineland Adaptive Behavior Scales [link] (Sparrow et al., 1984). There is also a section on atypical behaviors that are not specific to autism. These include unusual responses to sensory stimuli, differences in attention and activity level, challenging behaviors, and other psychiatric disorders. Items relating to developmental delay are rated on a 3-point scale, as "delay," "minor delay," or "no problem." An actual age is coded for some of the developmental items. Atypical behaviors receive codes for "current" and "ever" and are rated as "severe," "minor," or "not present."
So, while other tests might be better suited to answer the question "Does this person have autism?" the DISCO seems to be more geared toward answering the question "What does this person's autism look like?"

Anyway, the researchers did a full psychodiagnostic workup on those children and teens who turned up at the clinic without having been evaluated for autism before, and quizzed the parents of those kids who had previously been evaluated in the above-described manner.

They found that 6% of the 233 young people referred to the clinic (14 people or so) had some kind of ASD. This rate --- which the LB/RB blogger point out is about six times the rate at which autism occurs in the general population --- remained consistent regardless of gender-identity outcome: kids who ended up with a diagnosis of full-blown Gender Identity Disorder were no more or less likely to be autistic than the kids diagnosed with GID-NOS or the kids discharged without any diagnosis.

Most interestingly, the people who did end up with dual diagnoses of ASD and GID included both sexes, which, if that finding is replicated in larger studies of autism prevalence among trans or otherwise gender-variant people, could come into conflict with Simon Baron-Cohen's Extreme Male Brain theory of autism, which hypothesizes a direct relationship between fetal testosterone levels, masculinity, and autism. A high proportion of autistic trans men and butch women would thus be in accordance with theory, but not trans women or feminine men.

10 comments:

aesmael said...

Thanks for posting this, intriguing support of my anecdotal supposition... it seems the vast majority of people I know are autistic trans or gender variant people, but always wondered if that could be entirely selection bias.

Have been very curious to wonder how conflicts between the most prominent ideas of how autistic and trans people come about might be resolved.

Gonzo said...

I'm a bit confused about this study. They *screened* a group of people, but they don't say whether they compared that number to a control group that was screened in exactly the same way.
(Or did I miss something?)
Another thing is *how* these findings are Autism related.
I also have the impression that among Autistics there seem to be much more LGBT people, but the reason for this could be that Autistics are bad at recognizing social norms. I'm thinking of the many (NT) people who *are* gay, but live in complete denial.

Stephanie Lynn Keil said...

I rarely think about my sexuality but I'm pretty sure I'm not under the GBLT umbrella.

I don't know ANY autistic people who are GBLT. The autistic people I know have no relationships at all, never mind any kind of romantic relationship.

Lindsay said...

@Gonzo,

I was also a bit confused about the study design, but from what I can tell, they were trying to find out about the co-occurrence of autism and gender variation, so they went to a clinic for children and adolescents dealing with gender-identity issues, and screened everybody referred there for autism.

You're right that there doesn't seem to be a control group; I'm guessing the control group is meant to be the general population, the prevalence of autism among which has already been pretty extensively studied.

(Not that we couldn't do with more of such studies, but a group of 200-odd "control" children and teens is a much, much smaller sample size than most of the existing studies have. I wouldn't fault this study's authors for just using the currently-accepted values for the rate at which autism occurs among the general population, rather than try to determine that themselves --- which it's likely that they wouldn't have had the resources to do well anyway, it being such a small study).

"Another thing is *how* these findings are Autism related."

They're not, directly. There've been a number of case studies in the past of autistic boys with "cross-gender" preoccupations (most often, dress-up games), and I think this study was done mostly to see if there really was any sort of trend there, or if the recurrence of such stories actually reflected a higher proportion of trans and genderqueer people among autistics.

Also, as discussed in the post, findings relating autism and transgenderism do have direct relevance to one theory of autism: Prof. Baron-Cohen's.

"[T]he reason for [higher incidence of LGBT identity among autistics than NTs] could be that Autistics are bad at recognizing social norms."

Yes, this is my hypothesis, too.

Lindsay said...

Stephanie, you raise good points as well.

It's true that autistics are a *LOT* more likely to be asexual than nonautistics are, and even when they have sexual feelings, they are often unable to act on them.

This might be due to social isolation, lack of social skill, or institutional or group-home policies that actively suppress even fully consensual sexual relations between residents.

AnneC said...

I have always felt sort of "outside" gender role stuff myself and while am fine/indifferent with being physically female have generally felt more androgynous internally, I guess. I am always kind of bewildered when people talk about feeling strongly like they are "masculine" or "feminine". Honestly I didn't even have a sense that anyone thought that way for real until I learned about trans folks and came across some accounts of people who very clearly and obviously felt like a gender *different* from their body sex!

And re. relationship stuff, I did not "date" at all growing up, not even in high school. I also don't know if I had the usual kinds of attractions to people; I had periodic "extreme fascinations" with people (like this one sophomore when I was a high school freshman, who I sort of followed around and had a ritual of waving at every day and managed to freak out at one point by touching his hair) and kind of felt like I wanted to spend more time with them but I was actually kind of terrified of anyone actually liking me "in that way" because they might want sex or something and I still hadn't even *kissed* anyone by the time I graduated from high school at 18.

I do have a (male) partner now who I live with (he is playing video games across the room as I type this). We moved in together initially because it was more convenient to network our computers together. That was in college and we are still together. I never thought I would find anyone or even WANT to be with anyone in this way, because I thought I couldn't stand that much contact with anyone AND I knew I had generally just been viewed as something akin to "special ed freak girl" but I guess there did turn out to be someone I was compatible with. Couldn't have planned it or anticipated it, though, and definitely didn't go looking for it. I was 21 before I had that happen too. And he is definitely not any kind of macho stereotype!

shiva said...

Well, this is no surprise to me, as probably over half of the autistic people i've met are something other than straight and cisgendered, and i'm not sure i know any trans people who are entirely neurotypical... ;)

(Note that that doesn't mean i think all the trans people i know are autistic - while a few either definitely or very probably are, the majority would fall into the very wide category of "not autistic but not neurotypical" - which is paralleled by the category of "not trans but not entirely cisgendered" (although conflicting usages of terminology make that last category a bit more confusing - see this post) - and, in fact, possibly contains the majority of the people i know...)

AnneC - your first paragraph perfectly describes me as well! I wonder how common an experience this is among autistics?

AnneC said...

Oh one clarification: by describing a bit of my experience I am definitely not trying to say "oh look I am the archetypical experience of autistic gender and relationship stuff" -- my guess is that there are probably some experiences *comparatively more likely to occur* in autistic/AS folks than in the non-autistic population (and forgive me if I don't get into all the "spectrum semantics" stuff, as that would be both exhausting and off topic). But there are still variations. I know, for instance, other females on the spectrum who are quite stereotypically "girly", and others who had physical relationships at a fairly young age due to being very naive and not necessarily knowing what was going on. I was supervised a *lot* growing up, though, so there really was not much opportunity for anyone to "get to" me in that way. In any case will be interesting to see further study results -- but my guess would be that *any* brain variation (not just autism) which tends to result in atypical responses to social norms will produce a population that is less normative overall, regardless of whether that means queer sexuality, asexuality, or anything in between.

Gonzo said...

"AnneC - your first paragraph perfectly describes me as well! I wonder how common an experience this is among autistics?"

It definitely describes how I feel as well!
I don't believe in that male/female brain theory at all. When I watch people conform to their gender stereotypes it looks so affected and artificial to me, like they are acting.

Lindsay said...

This post is being targeted for spam like whoa, so I'm closing comments on it.

I'll leave the existing ones up, though, so don't worry about your comment disappearing. But if you've just found this post and want to comment on it, and your comment is germane, feel free to leave it on another post. I'll see it wherever you put it.