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A clear diagnosis for these women would be helpful in addressing challenges experienced in university life
As of 2013, anyone who was given an Asperger syndrome diagnosis is considered to have Autism spectrum disorder (ASD) instead. Practitioners can no longer officially diagnose an individual with Asperger syndrome, the developmental disorder characterised by significant difficulties in social interaction as well as restricted and repetitive patterns of behaviour and interests.
Not all people like the term ASD or that it is positioned as a medical disorder. Some prefer the terms “autism” or “on the autism spectrum” instead. Autism is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour. There are stigmas that get associated with the term which have created tensions and various approaches to providing proper support and health care.
According to Yani Hamdani, an assistant professor in the Department of Occupational Science and Occupational Therapy at the University of Toronto and a Clinician-Scientist at the Azrieli Adult Neurodevelopmental Centre at CAMH, “there was a desire to reflect the wide range of ways that autism presents in individuals — it’s a spectrum. It was difficult to distinguish between some of the diagnostic criteria for similar and related diagnoses.”
Along with the potential for blurred lines as to where people sit on this spectrum, there are other factors that make it complicated to navigate exactly where you fit in.
Some of these complications differ depending on your gender. Girls are typically known to be better at hiding autistic traits and mimicking their peers to fit in, which is why they often — more so than boys — get overlooked, misdiagnosed or left with no diagnosis at all. More research is coming out which shows “masking” or “camouflaging” traits are not solely girl-specific though; some boys and men also camouflage and some don’t camouflage at all.
One of the reasons that girls are less likely to be diagnosed with autism than boys is because this ability to mask their traits well makes them appear neurotypical, so they slip under the diagnostic radar, so much so that some are left undiagnosed until adulthood.
“The most commonly reported male:female ratio of autism diagnosis is 4:1,” Hamdani said. “Researchers in Canada, U.K. and the U.S. are exploring if there is a female ‘version’ of autism, or if the characteristics for diagnosis are expressed differently in girls.”
Other research, like Hamdani’s own, explores if there are gender differences in the experiences of autism. “For example, girls may be socialized differently than boys and may be more adept at learning social skills in order to ‘fit in.’”
While the ability to hide or mask symptoms may seem like a beneficial thing, it is actually harmful. With symptoms being easily hidden and harder to spot or notice, those suffering aren’t getting the diagnosis or support they need.
Getting diagnosed doesn’t necessarily provide access to treatment or support, but it gives people answers — it tells them they are valid in feeling the way they do — feeling “off” and that there is a reason for it all. They are constantly trying to fit into a confusing world of school, work, extracurriculars and social interaction, not understanding why it’s so difficult, which could have a negative effect on their mental health and well-being.
With a diagnosis, they can seek help and understand that they are not “weird” or “bad” but that they have a medical validation to these feelings.
On top of that, women starting university face a whole other slew of challenges beyond the struggle of hiding their symptoms and getting misdiagnosed. University, although potentially an easier place than high school to “be yourself,” comes with insecurities and challenges for everyone. If schools aren’t properly navigating or welcoming women with autism who already feel lost surrounded by their neurotypical peers, they can feel even more isolated.
“Many universities are implementing autism-specific support for their students,” Hamdani said. “I think it is important for all students, including students who identify as autistic, to have access to the support they need to be successful in a post-secondary program.”
Support programs may include accommodations for classroom learning and for tests and assignments but also mental health and social support. “Additional support to explore post-secondary goals would also be helpful, such as learning how to get and maintain a job and how to negotiate what someone needs to be successful in employment.”
Riley Goldsmith, a Ryerson student who has autism, doesn’t think Ryerson “has any autistic women-specific resources.” And if they do, she doesn’t know about them.
A lot of autistic people have trouble communicating their needs, whether socially or academically so “having something clearly outlined to help us is crucial,” she said.
“I think being able to form a community of autistic women is so important, especially since university can be both so overwhelming and isolating,” Goldsmith said. “Bringing a group of women with like-experiences together is important because, by the nature of the condition, we feel completely alone.”
Goldsmith isn’t the only woman with autism who feels isolated and alone.
While Hamdani, who studies autism in girls, was away this November, she met with a group of Icelandic women who created a documentary called Seeing the Unseen about their experiences as autistic women.
The trailer for the film, by Bjarney Ludviksdottir and Kristjan Kristjansson in co-operation with the Icelandic Autism Society, expresses some of the pain these women experience on a daily basis. Some of the women talk about how they are empathetic to a fault. Some talk about how they feel so different. One woman compares herself to a female Forrest Gump. Another talks about growing up and remembering how she would rather slit her wrists than go to school.
“Some people say that we deserve an Oscar for acting, for we are always acting like neurotypical people,” one of the women said.
A lot of us see autism demonstrated in pop culture or are surrounded by people with autism, but all cases look different. Not all autism is so “obvious” or looks like Sam Gardner in Atypical, Raymond Babbitt in Rain Man, Christopher Boone in The Curious Incident of the Dog in the Night-Time or even Forrest Gump, for that matter, a character who was written to have many autistic traits. Some autistic traits are harder to spot, but just because they’re harder to spot, shouldn’t mean those suffering should get overlooked in the diagnostic process or in university programs and support services.
Hamdani says many autistic advocates consider autism as a dimension of difference and prefer to reframe their autism as positive and helpful in their daily lives. Turning autism into a positive reflects the ideas of the neurodiversity movement which “advocates for changing social attitudes about autism and embracing differences rather than changing them,” Hamdani says.
If autism is part of everyday life experiences for some students, more focus and resources should be put into helping them get diagnosed and making them feel comfortable and well supported at the university level.