Winter Blog Series!
Week Three
By Kimberley Hackman and Kiersten Hackman
Neurodiversity is a vast and diverse subject with a wide variety to explore. In the next few weeks, this blog will explore Autism (1) Language and Symbols – proposed solutions for providing improved resources and support for autistic and neurodivergent individuals in schools; (2) the scientific realm of diagnoses and research—examining under/misdiagnoses, the issues with the current DSM-5 system, and the changing conceptualization of autism and neurodiversity; (3) Autism and Gender – an overview of manifestation and the role masking plays in the spectrum of autism;
Topic: Autism and Gender. This blog is dedicated to briefly summarizing the basics of gender inequality in autism diagnoses that manifest due to the different presentations of autism in girls and a history of biased autism research.
To Ponder: “There is no definitive test for autism and no standard way of carrying out an assessment. The outcome of the diagnostic assessment has a subjective element and is based on the quality and quantity of evidence gathered and the experience and opinion of the clinician or clinicians involved…” – Sarah Hendrickx, Women and Girls with ASD, pg. 34
Tidbits:
Diagnosis & Gender
Essentially, for a very long time, autism has been presented as a “boy’s disorder,” with countless people finding different rates of autism in boys vs girls—even now, a 4:1 gender difference is widely accepted and when you search up “is autism more common in males?” on Google, the first results that come up seem to affirm this idea.
Listening to what autism-inclusive and -accepting researchers, psychologists, and diagnosticians are saying—and especially to autistic people themselves like the authors like Eric Garcia and Sarah Hendrickx, you will find much more of a discourse about the ways in which women have long been excluded from autism research, documentation, and diagnoses, thus causing systems like the DSM-5 to completely overlook the variance in autistic presentation that is more likely to manifest in these individuals.
According to Eric Garcia—an accredited Washington-based, autistic journalist and author of We’re Not Broken: Changing the Autism Conversation—since the very beginning of autism’s documentation by the medical community, studies have frequently favored the inclusion of a majority of male subjects, and the few women who were included often fit the more stereotypically male presentation of autism.
Such biased data-collection, resulting from often all-male, all-allistic research teams, caused their documentation of “what autism is” to be extremely based upon the presentation most often found in the stereotypically “male” population.
Many theories that have since been discredited, such as the “extreme male brain theory” or the “androgen theory of autism” (which postulated that elevated fetal testosterone levels lead to autism) have perpetuated this idea that autism is the manifestation of an extremely masculine brain type—characterized by “male” behaviors like systematizing and a “deficit” in “female” behaviors like empathizing.
Ideas like this effectively make it much more difficult for females to get diagnosed with autism, because the criteria weren’t made with them in mind, and that further caused less women to be present in autism research which further perpetuated this cycle of exclusion and discrimination, causing countless autistic women to go undiagnosed because they didn’t fit the stereotypically male profile.
More recently, the “female” presentation of autism has been given more focus, with many autistic people sharing their unique experiences and studies beginning to focus on this variance in manifestation, allowing for more awareness about the differences in manifestation in girls and causing many autistic women to finally get diagnosed later in their lives (there are so many of these women whose autism was missed as a child who are only now receiving their diagnosis that they have a name: the “Lost Generation” or the “Lost Girls”).
Many of these women are only able to be formally diagnosed through years and years of effort and with the right clinician. As Sarah Hendrickx explains in her book, Women and Girls with Autism Spectrum Disorder, clinicians must be able to ask the right questions in order to get the right data out of parents of girls with autism or autistic women themselves, and then interpret that data in the right way to get an accurate diagnosis (Hendrickx 34).
This is especially the case because current screening tests are designed for males, specifically young boys, and thus may not elicit the right information from female participants to highlight their autistic traits.
Example 1:
YOUNG BOYS
“Lining up toys” — a limited depiction of “autistic play” in the image of lining up one’s toys by color or subject that is specifically tailored to the activities of stereotypical, young autistic boys
DSM-5: Section B, Part 1, “Stereotyped or Repetitive motor movements, use of objects, or speech” (actually given as an example in this section)
WOMEN/GIRLS
Much more likely to engage in things like fantasy play with strict rules (Hendrickx 38)
Setting up dolls or toys in specific scenes (may be copied from scenes from movies, books, or real life) rather than “playing” with them as a neurotypical child might
Re-enacting scenes from a movie exactly or from their day or other things they have heard/experienced before rather than immersing themselves in purely “imaginative play”
Still appears fiction and fantasy related, which goes against the stereotype that autistic people are not imaginative—very untrue, neurodivergent people often have extremely rich inner worlds (Hendrickx 53-55)—and doesn’t match exactly with the idea of a young autistic boy lining up his Legos in a row, so it is often overlooked despite being a trait of autism in many girls
ADULTS
The DSM-5 criteria are also aimed at children (see the use of the word “toys”) due to long-standing stereotypes that autism is a “children’s disorder”
Autistic adults may instead line up things like colored pencils by color, or organize items in their room in a similar but less “obvious” way
Example 2:
YOUNG BOYS
“Obsession with trains” is the long-standing stereotype for autism, based again around a particular profile of a young autistic boy
DSM-5: Section B, Part 3, “Highly Restrictive, Fixed Interests that are Abnormal in Intensity or Focus”
WOMEN/GIRLS
Much more likely to have interests in people, animals, or fantasy
Book series—such as memorizing entire fictional languages like those in Lord of the Rings
Celebrities, Performers, Bands
Animals like horses
(the stereotype of the often ridiculed “horse girl” is actually an interesting manifestation of ableist attitudes towards many autistic girls who hyper-fixated on horses as their “special interest”)
May even pretend to be animals (to escape from anxiety-inducing life)
Interests are often perceived as more “socially-acceptable” or explained away by being “quirky,” resulting from the different socialization of girls in society
The difference between “female” autistic and allistic interests is the intensity
ADULTS
Again, the diagnostic criteria is focused on children by giving another example using toys, while adults may manifest this trait differently
Instead, they may become very interested in a particular subject matter that they pursue as a career and are supremely knowledgeable in
May struggle with jobs that don’t revolve around their interests because it’s hard to focus when they are not able to talk about that specific topic
May maintain hobbies outside of work that are described by neurotypicals as “obsessions”
May also have “special interests” manifest as a person, place, or object
not just adults, as this can obviously happen at all ages as well, but I am just showing an example of how hyper-fixations can manifest outside of the DSM-5’s stereotyped depiction
A clinician using the DSM-5 examples for reference and ignorant to these other behaviors that demonstrate the same criteria, might not diagnose an adult woman or a young girl with autism, simply because they are not asking the right questions or interpreting this data in a way that leads to autism as the conclusion (Hendrickx 34).
“…females are significantly less likely to receive a diagnosis than males (Giarelli et al. 2010; Russel el al. 2011), and by using current diagnostic methods, some females may “look” less autistic, but not actually ‘be’ or ‘feel’ any less autistic (Lai et al. 2011). - Sarah Hendrickx, Women and Girls with ASD, pg. 34-35
Hopefully, diagnostic tools will improve and become more inclusive to all presentations of autism.
People like Tony Attwood have developed potential “Screening Tests,” which focus on more commonly “female” presentation characteristics like fantasy world play and relationships with people and animals, to support the identification of girls with autism (Hendrickx 37).
Furthermore, the DSM-5 has added an addendum to Section C clarifying that while “symptoms must be present in the early development period,” they “may not become fully manifested until social demands exceed limited capacities, or may be masked by learned strategies in later life”—a specifier that may aid women, who are more likely to mask and may not show an obvious manifestation of autism until severely overwhelmed or burnt out, in getting diagnosed.
However, until diagnostic criteria are truly made inclusive, it is crucial that clinicians become far more educated than they are now, refer heavily to sex-specific tools such as these, broaden their perspective of autism through face-to-face experience with women with ASD (autobiographies, blogs, YouTube, women’s support group, etc.), and make informed judgments not based on preconceived notions or the “inexperienced clinician’s tick box approach to the autism diagnostic profile (Hendrickx 38).