Cards are Stacked

Content Warning: this post contains a bit of a rant about the extreme male brain theory of autism and a bit about the gender disparity and challenges of seeking a diagnosis as an adult, born female person in the US.

Disclaimer: I am not an autism expert. The information presented here is based on my own research and independent study. These are my opinions and not meant as authoritative on the subject. Take from it what you will….

To start, I understand that the field of psychology is not a monolith. There are many schools of thought with many of those practicing within it doing wonderful work which is helping many people. Having said that, there are parts of the field that are problematic. One area is the ongoing pathologizing of and discrimination against women and minorities. This is exemplified in the wide acceptance within the field of the extreme male brain theory of autism.

The extreme male brain theory of autism was developed by Simon Baron-Cohen in the 1990’s which theorizes that there is a fundamental difference between male and female brains to explain the disparity in diagnostic rates in autism between males and females at that time.

Speaking frankly, this theory is severely flawed. It ignored known medical science in order to justify a highly gender biased assumption: More males were being diagnosed with autism than females and nonbinary folk. Baron-Cohen theorized that this must mean there was a basic difference in female brains that kept them from being autistic. (Anyone else see a basic flaw with this?)

Sadly, wide acceptance of the extreme male brain theory has meant is that research into how autism presents for women, girls, nonbinary people and atypical males has been slow coming. And, changes to the diagnostic and testing tools has been even slower. There is a very real cost here paid in human suffering. Uncounted numbers have had to grow up and into adulthood without support or understanding themselves and often facing bias and misdiagnosis within the mental health field.

It has taken longer than it should, but growing evidence that there are other presentations of autism has finally overwhelmed the extreme male brain’s hold and allowed for a shift in understanding of the subtler presentations of autism more often experienced in women, girls, non-binary people and atypically presenting males. Although, the theory has been debunked in recent years by this new understanding and rising numbers of diagnoses in the corresponding populations, since extreme male brain had been accepted wisdom for more than 20 years, the theory has been slow to die. :'(

To this day, psychological research is in effect ignoring autistic adults and their experiences instead focusing the bulk of the research in the field on children with autism. Any number of myths and misunderstanding about the autistic experience have been perpetuated as a result. This is a real point of contention for the adult autistic community. By excluding adult autistic voices and only discussing autism amongst those within the field, a very skewed picture emerged. One that allowed theories like extreme male brain to thrive. (To put this into perspective, imagine this paragraph with Black people, Indigenous people or LGBTQ+ people in it instead of autistic people and this injustice may become even clearer.)

The DSM5, the official diagnostic manual for the US, allows psychologists to take into account the more subtle presentation of autism; however, little to none of the gender biased testing and diagnostic tools have been renovated. Instead, it is left up to individual psychologists to determine if there is enough evidence to diagnose based on the self reporting of a population whose main difficulty is a communication deficit. This just seems arbitrary and extremely unfair.  

And, this does not even begin to take into account issues such as cost (which, unless you are privileged enough to be covered by insurance or other programs, is astronomical), access, and social disparities such as implicit bias for minorities and LGBTQ+ (especially Trans) folx, etc...

So, the cards are stacked. For all with an atypical presentation of autism when seeking diagnosis. It cannot be stated enough how important it is to find the right diagnostician. This is easier said than done and often comes down to luck more than anything.

I got lucky. I found a practitioner who recognized my autism readily. I recognize this for the privilege that it is (and that it is a privilege that I was able to access diagnosis at all).

I will be real and share that I was scared to seek diagnosis. It took a great deal of fortitude especially since I have faced misdiagnosis within the mental health field in the past.

It was a time of great uncertainty. I wrote this post in part as a way to cope with that uncertainty. In the end, I chose to embrace that identity and diagnosis are not the same. I decided that since the cards were stacked, I would embrace my identity as an autistic person regardless of the outcome.

Within the next 5 years there is likely to be a big shift in the way autism is assessed in adults. Especially for the atypical presentation more likely in born female people. I was ready to wait and seek diagnosis again later if I had to. Luckily, it was not necessary in my case.

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Note: It must also be said that, at different points in history, the field of psychology has pathologized the Black, Indigenous and LGBTQ+ communities to justify their marginalization. As example, homosexuality was a mental illness warranting institutionalization until the 1970’s, it was considered mental illness for slaves to want to escape from the brutality of slavery and indigenous peoples were considered mentally ill for wanting to remain close to the land rather than “progressing” into industrialized society.

For any interested in learing more about the extreme male brain theory, here is a paper criticizing it in much greater detail. Read it at your leisure if so inclined: