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New clinical guidelines address gender dysphoria in autism

by  /  7 November 2016
Boy looking in mirror sees girl reflected back
Identity questions: People with autism show higher-than-expected levels of gender variance.

Dan Page / theispot

A new set of guidelines aims to help clinicians recognize and treat gender dysphoria in adolescents with autism1.

The guidelines, released 24 October, recommend that teenagers seeking treatment at gender clinics be screened for autism, and that those with autism be assessed for gender concerns. Autism clinicians have been awaiting the recommendations, which also reflect expert opinion on the co-occurrence of the two conditions.

People experience gender dysphoria when their biological sex and perceived gender do not match. Some studies have reported that people with autism show higher-than-expected levels of gender variance2. Likewise, the prevalence of autism among transgendered individuals is higher than in the general population3.

“Many of these kids coming to our programs are not just over-focused in an autistic sense on some aspect of gender — this goes deeper,” says John Strang, a pediatric neuropsychologist at Children’s National Health System in Washington, D.C. “You need to listen to them and tailor medical approaches to meet their needs without expecting them to conform or fit into a box of typical gender.”

Strang created the guidelines in collaboration with 22 specialists in fields such as pediatrics, psychiatry and endocrinology. Most of these experts agree on the basic tenet of reciprocal assessment and screening. They also concur that some children with autism experience a sense of gender outside the male-female binary.

Autism specialists who see many young people with gender concerns say they are relieved at finally having a set of guidelines to inform their practice.

“We were relying on best practices for autism spectrum disorders alone, and that’s not sufficient,” says Audrey Blakeley-Smith, associate professor of psychiatry at the University of Colorado School of Medicine, who was not involved in creating the recommendations.

The ‘right’ hormones:

The Endocrine Society, an international association focused on endocrinology and metabolism, recommends hormone treatment for adolescents with persistent gender dysphoria who have no unaddressed psychiatric conditions and who can understand the outcomes of the treatment4. The treatment, which typically starts around age 13, involves puberty-blocking hormones that halt the development of secondary sex characteristics.

The effects of these hormones are reversible. But if gender dysphoria persists, around age 16, teenagers can begin taking a new set of hormones that align their bodies with their perceived gender.

The new guidelines affirm the rights of individuals with autism to receive treatment for gender dysphoria, but the experts disagree on the best time to initiate treatment. Some say adolescents with autism and gender dysphoria should try living as their perceived gender on at least a part-time basis before beginning hormone treatment. They might, for example, change their name or wear clothing that matches their perceived gender at home or in the community.

Others say this approach would create difficulties for young people with autism, who may feel they need “the right hormones in their body” before living in the corresponding gender, Strang says. Young people with gender dysphoria who are not on the spectrum tend to be less insistent on the need for hormones before transitioning socially to their perceived gender.

The guidelines acknowledge that adolescents with autism, many of whom have trouble planning for the future, need ongoing support in discerning their gender identity, exploring the implications of living as another gender and making decisions about medical treatment. This process may take a little longer in young people with autism. Their parents, too, may be concerned about moving forward too quickly. “We are not closing doors, but we are also not rushing into treatment,” says Strang.

Delayed development:

Blakeley-Smith says one in four people who come to her autism clinic are young adults with gender dysphoria who say they are on the spectrum. She also sees young adults that she diagnosed with autism as children come to the clinic years later with concerns related to gender dysphoria. “I think this is a severely underserved population,” she says.

Other experts say a fixed gender identity may take longer to develop for individuals with autism than it does for typically developing youth5. As a result, they say, many teenagers with autism who do not conform to gender expectations or who have a fluid gender identity may ultimately accept their birth gender.

“My concerns are less about the guidelines and more about the research used to substantiate the idea that gender dysphoria is more common in autism,” says Gerrit I. Van Schalkwyk, clinical fellow in child and adolescent psychiatry at the Yale Child Study Center. “My argument is you need to understand the normal course of gender development for people with autism first.”

Strang says he hopes that ongoing collaboration between autism and gender experts will help determine how often gender dysphoria and autism co-occur and guide clinicians to meet the needs of those with both conditions.

  1. Strang J.F. et al. J Clin. Child Adolesc. Psychol. Epub ahead of print (2016) PubMed
  2. Strang J.F. et al. Arch. Sex Behav. 43, 1525-1533 (2014) PubMed
  3. De Vries A.L. et al. J. Autism Dev. Disord. 40, 930-936 (2010) PubMed
  4. Vance S.R. et al. Pediatrics 134, 1184-1192 (2014) PubMed
  5. Van Schalkwyk G.I. et al. Yale J. Biol. Med. 88, 81-83 (2015) PubMed
TAGS:   autism, diagnosis, gender, sex

13 responses to “New clinical guidelines address gender dysphoria in autism”

  1. Jill Escher says:

    This is a very real and common phenomenon in autism. Thank you Spectrum for addressing it. I have observed that many of the ASD+gender dysphoric young people are the grand offspring of women treated with the toxic, gender-bendy but once-common synthetic estrogen diethylstilbestrol (DES) in pregnancy. The mechanism would be dysregulation of developmental programming contained in exposed parental gametes. I am finding a pilot study to examine this perceived association.

    • Jill Escher says:

      I meant “funding.”

      • Deborah Rudacille says:

        Jill – One of the young people in the article is a DES-grandchild. The mom volunteered the information in the interview. I would be very interested to see the results of your study as I have long been interested in the connection between DES and gender dysphoria and now, possibly, ASDs as well.

        • Deborah Rudacille says:

          That is, one of the young people in my previous article on the subject for Spectrum, “Living Between Genders”

          • Jill Escher says:

            Thank you for sharing that, Deborah. I am not surprised, I have seen this pattern over and over in families, yet in spite of the biological plausibility based on research in EDCs it’s never been studied. The pilot study I just funded is out of Harvard, I’d be happy to keep you in the loop. You can learn more about that grant, other grants, and my work generally at (Escher Fund for Autism).

  2. MrGrow Ingup says:

    Interesting piece, thank you. Anecdotally there may be some association and clinicians have been looking for links for some time, but there is still a huge evidence gap. More research needed. Are there more autistic children with gender identity issues than in wider population or are there other factors at play such as less stigma attached to gender presentation? Interesting that your site is Spectrum. Like ASD, increasingly gender is being seen to be a Spectrum, perhaps ASD kids are better able to find their place along it. For a parents’ perspective on raising a transgender child you may be interested in our blog:

  3. Jane says:

    It would seem to me that this link to autism proves that gender dsyphoria is more likely to be a mental disorder and should be treated as such. It’s insane to be cutting off body parts and giving livelong hormones when dysphoria can be so strongly linked to autism and transitioning doesn’t solve the problem in a lot of cases. The medical profession is either shooting in the dark or having a hell of a good time experimenting on children and teens in particular. Sickening.

    • Jane says:

      And 31 genders or whatever the number is up to is simply more of a sign of insanity. Really people lets grow up.

      • Alan Red says:

        Thank goodness you aren’t in charge of diagnosing anyone. You have no understanding of ASD or gender diverse children.

        • Jane says:

          You should wish that I was in charge. I wouldn’t be giving children at the age of 13 puberty blockers and hormones and then at the age of 16 moving them into final stages toward transitioning. I especially wouldn’t be taking advantage of children with autism. It’s damned Orwellian. I have no idea who you are or what your background is as you only want to critique but I know that in the UK a study showed that transgender in children is up 1000%. I know that in Toronto Dr. Kenneth Zucker a transgender specialist was fired last year after decades of proving that if you leave children alone 80% plus will go back to their birth sex and those who do not will often go on to live hormone free, surgery free lives as members of the LGB community. I know that Dr. Zucker worked for a government run but a gay Premier who has forced extreme sex education onto children in spite of upset parents and the firing of Zucker was a complete shock to his staff.

          There are many parents who are seeing transgender as a contagion among teens and are beside themselves to stop it. Many medical professionals are becoming very upset and concerned with all this but are afraid to speak up because of their jobs. I’m sure you have been in that position- we all have. So these wonderful ‘doctors’ and their new guidelines suddenly have hundreds if not thousands of children that are transgender and are lining them up like they just got off the train at a concentration camp. The only ones who need to be diagnosed are the one who are not questioning the total insanity of all of this.

  4. Hughspeaks says:

    Assuming you’re the Deborah Rudacille of “The Riddle of Gender” fame, you already know that there’s a physical developmental basis to being trans, and that for many of us, it’s the result of being prenatally exposed to synthetic hormones such as DES or progestins.

    I can’t speak for other people, but, while my childhood was fairly OK, I experienced a great deal of bullying and social isolation throughout my teenage years, which undoubtedly affected my social skills and my ease of interacting with people. I think the reason why my peers rejected me as soon as I hit puberty, is that the parts of my brain that generate body language and instinctive social behaviour are some of the parts that developed as female instead of male. In addition, I have a type of body structure that’s called “eunuchoid habitus”, which is something that’s usually associated with intersex conditions, and makes you look a bit like a cross between a man and a woman. What I think was happening is that people were seeing a feminine-looking man with female body language, and the way they were immediately interpreting it was to assume I must be gay. Since that was an even bigger no-no in the 1970s than it is now, naturally I was excluded from everything as soon as my peers were old enough to pick up on it.

    Another problem is that my hormone levels have never been very well controlled, and I’ve had symptoms of hypogonadism all my adult life. Although I didn’t have any blood work done until quite recently, remembering back on it now, what I think was happening was that my testosterone would surge up to a high level for a few days and then crash for the next week or so, and this was causing me to experience massive mood swings.

    Male and female brain tissue have widely differing needs as far as blood hormone levels are concerned, and even if I’d had normal male hormone levels, it wouldn’t necessarily have been a good match for the needs of my brain. Female brain tissue is designed to work with high levels of estradiol present and low levels of testosterone, not the other way round!

    So there’s two important factors that could lead to trans people developing social problems and displaying Asperger’s like symptoms: social exclusion, and hormones poorly matched to the needs of their brain. If they’d been part of an accepting social group, and been given hormone treatment to better align their hormones with their brain chemistry (and their external appearance with their internal identity), there might never have been a problem.

    • Deborah Rudacille says:

      Thanks for your comment, Hughspeaks, and I apologize that it’s taken me so long to respond. Your experience and that of Jill Escher above point to possible biological mechanisms underlying the overlap between autism spectrum disorders and gender dysphoria, but as you point out, social exclusion and social stigma likely also play a role in some of the autism-like behaviors in people with GD. I did a feature story for Spectrum last year (titled “Living Between Genders”) that discussed this in more detail – if you haven’t seen it, you might want to check it out:

  5. Rose Walker says:

    I wonder how much hormones have to do with it. We all have both, don’t we? And obviously DES is messing people up. But I remember reading a story of a man who lived as a man until the children were raised. Before he began the transition to a woman, an off-hand comment in the story said that his testosterone levels were almost nil.

    I wondered why more wasn’t made of that statement.

    We are such complicated beings.

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