Double diagnoses: Autism and gender dysphoria

I was diagnosed with a form of autism (PDD-NOS) before I started my transition at the Amsterdam UMC (previously VUmc). PDD-NOS is the abbreviation of Pervasive Developmental Disorder Not Otherwise Specified, is an English name for disorders that are classified as pervasive or ‘deep-seated’ developmental disorders. These disorders fall under the Autism Spectrum Disorder (ASD).

I didn’t pursue any assistance after my diagnosis of PDD-NOS. I thought I could handle it on my own. However, during conversations with a psychologist from the gender clinic; I was advised to find a permanent psychologist (outside the gender clinic) to support my transition. Their reasoning: changes associated with the medical transition process can be extra difficult for people with autistic characteristics.

A few months ago, I decided to take a more serious look at the impact that the diagnosis of autism has on my life. I had to admit that my life seemed more complicated than those of my friends at secondary school. By now, they had built up a busy social and working life. We had started on the same level, but somehow I stagnated after college. I decided to follow the advice of Amsterdam UMC and started a psycho-educational program. It was a program designed to help me understand my diagnosis better.

From the moment I started being more concerned with my diagnoses; there seemed to be a lot of transgender people in my immediate (and less immediate) surroundings who had also been diagnosed with an autism spectrum disorder (ASD). Doing some online research, I found out that my suspicion that a disproportionate number of transgender people have a autism spectrum disorder, is also being scientifically investigated.

For example: I found a scientific article from 2010 Autism Spectrum Disorders in Gender Dysphoric Children and Adolescents, written by a Dutch doctor Annelou de Vries et al. The article describes the results of a study into the occurrence of ASD and (gender) dysphoria in children and young adults. The article states that it is estimated that the prevalence of ASD in the general public is one to two percent. Amongst the transgender community studied, the prevalence of ASD was estimated at no less than 10 percent.

Dr. Annelou de Vries

Dr. Annelou de Vries works as a child psychiatrist at the Kennis- en Zorgcentrum voor Genderdysforie (Knowledge and Care Centre for Gender Dysphoria) of Amsterdam UMC. In collaboration with pre-doctorate researcher Anna van der Miesen (MsC), she conducts various studies into autism in people with gender dysphoria.

MsC Anna van der Miesen

In order to get more clarity about possible causes and connections, I talked to Annelou and Anna about their findings and about circulating theories on the connection between autism and gender dysphoria.

I’ve come across several theories when it comes to the combination of autism and gender dysphoria.

One theory seems to state that gender dysphoria stems from the autism of the person in question, because it would be part of the fixation or obsession that often occurs in people with autism.

Another theory states that both gender dysphoria and autism are more common in Assigned Females At Birth (AFAB) when they are exposed to a higher concentration of androgens (testosterone) in the uterus.

A final theory is that people with autism are less certain of the limits imposed by society. Therefore, they would be inclined to take the gender standards less strictly.

Could you confirm these theories and expand on any I may have missed?

Annelou: “The first question you need to investigate is: ‘Is there actually a connection between gender dysphoria and autism?’ The next step is to search for what is causing this connection. We found that about ten percent of our transgender clients had autism. They were all people with classic autism rather than mild symptoms. We presented these findings to colleagues and received many responses from doctors who saw the same thing at their gender clinics around the world. Most studies, looking at characteristics of autism and characteristics of gender variation in clients, show that co-occurrence happens more often than you would expect on the basis of chance.”

Anna: “As a scientist, you try to prove that something is the way it is. The more often you find a certain result, the higher the probability that the result is reliable. So in the end, there should be an accumulation of evidence; we are still in the accumulation phase. Around twenty studies have been conducted worldwide into the connection between gender dysphoria and autism. That number is still too little draw a conclusive result, but these studies do seem to point to a higher co-occurrence. I’ve studied the underlying hypothesis that gender dysphoria in people with autism is a fixation. I looked at autistic (sub)characteristics in young transgender people. My conclusion was that gender dysphoria isn’t an autistic obsession. There’s only one study right now, so there’s not enough proof for this hypothesis. That’s why the theory of autistic fixation is still described in literature to this day. We are careful when people with ASD come to the gender clinic. We check if the desire for transition is a temporary or transient fixation, or if the desire to transition is a deeper desire along with such things as gender dysphoria. We can’t fully conclude that a temporary fixation doesn’t exist in regards to gender, so we’re still careful. We don’t want the client to go down a road that they might regret.”

Annelou: “The theory about the effect of hormones in the uterus during pregnancy is from psychologist Simon Baron-Cohen and is speculative. Baron-Cohen uses the hypothesis that children assigned male at birth (AMAB) think more systematically than AFAB children generally speaking. AFAB people tend to be more empathic and can more easily place themselves in someone else’s shoes. According to Baron-Cohen, an increased level of the male hormone testorone can cause a so-called ‘extreme male brain’. His research also suggests that this happens with people on the autistic spectrum. Previous research among transgender people has shown that transgender men have more autistic characteristics than transgender women. So the theory of the ‘extreme male brain’ would only apply to those who are AFAB. We were wondering, what about AMAB people with gender dysphoria? Research would suggest they would’ve had less prenatal testosterone exposure. We haven’t found anything similar in our research so far. On the contrary, in both boys and girls with gender dysphoria we saw that autistic characteristics are more common. This theory seems less likely to us”

Anna: “The third theory on sensitivity to social norms: it hasn’t really been researched yet. However, I think it’s a good hypothesis. I often hear from our autistic youngsters that gender identity and sexual preference is something that doesn’t really matter to them. Our society is quite binairy, especially when it comes to gender. Gender roles and standards are projected through our society from a young age. I can imagine that people with autism are less sensitive to those standards.”

I’ve also read experiences of people who didn’t get permission for the medical transition, because they were diagnosed with an ASD.

Anna: “Autism isn’t a contra-indication for us. So that wouldn’t be a reason not to treat someone. Our message for people with autism isn’t that a transition isn’t possible. However, it’s important to pay sufficient attention to autism during treatment. Both diagnostic steps and treatment steps can be more complicated. Many people with autism have anxiety. Some people have anxiety surrounding medical treatment. You have to overcome that to go through transition.”

Annelou: “Some people with autism have more difficulty talking about what they feel or how they experience something. Some people have difficulty imagining what they’ll be like and how they’ll live. Those are things we need to talk about. Our clients must try to formulate a picture of the future, otherwise they’re more likely to take steps that may not be the best for them. These issues tend to be more difficult for someone with autism. It can take more time to figure it all out. It can be comforting to talk about this with autism counsellors or therapists.”

Anna: “Our task is to make people feel better about themselves. Different things contribute to happiness in life. That’s why we don’t just look at one part, but at the whole person in front of us. We look at what it takes to increase that person’s happiness.”

Will this personal approach still work with so many applications?

Annelou: “That’s what I’m most concerned about. The emancipation of transgender people has led to an increase of applications at the gender clinic. We can’t process that amount of applications or care at all. Over the past five years, the department has grown by twenty percent each year, but the number of applications has risen by forty percent each year. There should be more places in the Netherlands where transgender care is offered. With only one gender clinic in Groningen and one in Amsterdam – the gender clinic in Leiden is unfortunately closed – there are not enough gender clinics.”

The doctoral research of MSc. Anna van der Miesen focuses on the co-occurrence of (characteristics of) gender dysphoria and (characteristics of) autism. A link to her publication Prevalence of the Wish to be of the Opposite Gender in Adolescents and Adults with Autism Spectrum Disorder on Springer.