World Autism Awareness Month: Underrepresentation of Women in Autism
By Zyrah Ysabelle Longakit
In 2023, CDC reported that approximately 1 in 36 children originating in the U.S. is diagnosed with autism spectrum disorder, according to the 2020 data. Autism (clinically defined as Autism Spectrum Disorder or ASD), unlike other disorders, can be difficult to diagnose. This means that people with ASD might not receive early treatment or even the medical attention needed. Furthermore, Sarah Lister Brook, clinical director of the National Autistic Society, says that 80% of women with autism are misdiagnosed. This comes from the fact that males and females with autism display different symptoms; studies have shown that autistic girls exhibit less repetitive behavior than boys do.
What is Autism?
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition caused by differences in the brain. These differences result in poor social interactions and communication skills, difficulty of speech, sensory issues, emotional immaturity, and behavioral challenges. These symptoms may vary between individuals and may occur distinctively between genders.
Photo Credit: AutismBC
The abilities and needs of people with autism vary and can evolve overtime. Aside from the challenges they face in a day-to-day basis, they also attain abilities and strengths that are not present in neurotypical individuals.
We must acknowledge that these traits and interests differ among people with autism and the following characteristics are just generalizations of the majority:
Attention to Detail
Observational Skills
Creativity
Visual Skills
Focus & Concentration
Interests & Expertise Between ‘Niche’ Areas
Character Strengths such as Honesty and Loyalty
While it can be considered as strengths at times, these traits are what also causes obstacles in the lifestyles of people with autism. In a beneficial perspective, observational skills might mean that these individuals can distinguish patterns skillfully. However, in a place full of people and social interactions, attention management might be difficult for people with autism, causing them to be overwhelmed by the vast observed sensations such as the sound of people eating, the texture of the chair where they are sitting, or even how the food is arranged.
Note: There is still an ongoing debate on whether we should say “person with autism” or “autistic person”. Most have used and continue to use the term “person with autism” since they find it more polite and respectful to hear.
How it Works
Diagnosis through imaging of the brain is infeasible; while it can provide us measurable differences, it is ultimately challenging to distinguish a brain with ASD from a brain without ASD. “The changes in the brain are subtle and we mostly see them in the average across a lot of individuals because in single individuals, just the normal differences person to person tend to be much more dramatic than the subtle systemic changes associated with autism”, says Jeffrey S. Anderson, MD, PhD, professor of radiology at the University of Utah. So, instead of tackling neuroanatomy – study of structure and organization of the nervous system of the brain, it might be more feasible to talk about how the architecture of the brain differs between autistic and non-autistic brains.
While there is no single characteristic pattern in brain structures for people with autism, caused by the vast variation in individuals, trends emerging from different subcategories of people with ASD might give us an insight on how brains with ASD function distinctively from brains without ASD. This can be done with the use of a non-invasive brain-scanning technique called MRI (Magnetic Resonance Imaging). Respectively, findings have suggests that the reason why people with autism are more skilled with visual tasks than neurotypical people is primarily due to a higher development in the areas at the back part of the brain which are made up of visual processing regions such as the occipital lobe, housing the visual cortex which receives visual information sent by the retina. Moreover, studies have shown that there is a decrease of gray matter present in the cerebellum, and this can be the underlying cause of decline in cognitive functions. Cognitive functions are mental abilities which allow us to perform complex tasks as it enables us to process, store, and use information. A decline in these functions may cause perceptual problems, as such found in people with ASD.
While these are only one of the many neuroanatomical descriptions of ASD, it might provide a glimpse on how the different wirings of the brain produce different neurological experiences.
Neurodiversity: Autism as a Spectrum
Neurodiversity is the diversity of human brains and minds. Like the color wheel, autism is a “spectrum”, having a variation of experiences in different individuals. People with autism might have varying symptoms, like how ASD performs variably between males and females, and these can also differ in severity and type. We must keep in mind that autism isn’t just “one” condition; it is a collection of related neurological conditions intertwined together. When talking about autism as a spectrum, you would view it like you would with the visible color spectrum, with different wavelengths, hues, and intensity. Some people have come to think that autism is like a gradient, in one color, lightest to the most saturated, thinking that the autism “spectrum” embodies something like “a little autistic” to “severely autistic.” Contrastingly, the autism spectrum might be embodied as something like having the different colors represent an aspect of autism such as sensory processing, repetitive behavior, social awareness, and etc.
Nowadays, the color wheel has been widely used as a model of ASD, replacing the spectrum. The reason for this is because people have been using the spectrum to label people with ASD with terms such as “low-functioning” and “high-functioning” (In other words, meaning “less autistic” and “more autistic”). This has come to oversimplify the concept of ASD and limits inclusivity among people with ASD. We must come to face the fact that due to the Neurodiversity Paradigm, the human mind and brain, just like how we identify in different races and identities, is a form of biodiversity between species. And in according to that, mental conditions such as autism shouldn’t have a limited scope.
Photo Credit: @LauraFMcConnel
How ASD Affects Women
“Research on autism was mostly done on boys and men, so it’s likely that women are underrepresented among people with autism diagnoses”, says Jessica Myszak, a licensed psychologist and director of The Help and Healing Center.
Underrepresentation of Women
Historically, women have been underrepresented in studies on autism, which reflects how marginalized our scopes are in relation to minorities and excluded identities with ASD. Tools and methods used to diagnose autism were primarily designed for men, thus leading to several women either undiagnosed or misdiagnosed. Some women may even be diagnosed only later in life, resulting in neglected needs and support. It should also be stated that late diagnosis might pose a challenge since symptoms of ASD in adults are more subtle. We must endeavor to further expand our knowledge in cases of autism in minor social groups to provide early intervention in women and minorities with ASD, helping them cope with their condition as well as letting them have access to treatment.
Masking: Why it is harder to Diagnose Women
While it is true that the underrepresentation of women play a large role in misdiagnosing females with ASD, a part of it also includes a concept called Autism Masking. Masking (also called as Camouflaging) refers to when individuals with autism disguise their characteristic traits in order to fit in with the general social construct. This allows them to adjust according to societal standards by suppressing specific traits. Autistic girls and women (and some boys and men) were described as using social strategies to adapt to the demands of their social environment, thereby camouflaging their social difficulties and differences.
While present in some males, it is in females where masking is highly demonstrated. Girls may have a greater ability to hide their symptoms. Unlike men, women have generally less repetitive behavior and restricted interests. Their interests are more “socially acceptable”, as women with ASD showcase a stronger desire to fit in and maintain relationships with their neurotypical peers. These can result in masked symptoms, making it harder for ASD to be distinguished. Additionally, camouflaging might help them gain education and employment, prevent bullying and prejudice, as well as to minimize the feeling of self-isolation. Examples of masking include scripted or rehearsed responses in conversations, mimicking gestures and facial expressions of others, and learning socially acceptable behavior.
Although the act of Masking is beneficial as a coping mechanism against social stigma and discrimination, it also poses negative effects. One of these is called Autistic Burnout (sometimes referred to as Autistic Regression), it is a result of stress and not having the ability to act in accordance with expectations. Masking also increases levels of stress, anxiety, and depression. Consecutively, research has shown that camouflaging is a risk marker of suicidality in adults with ASD.
Famous Women with Autism
These are some women with autism who continue to flourish despite their condition:
Susan Boyle
She first appeared in the talent show competition “Britain’s Got Talent” in April 2009.
Boyle released seven albums including “I Dreamed a Dream”, which became the fast-selling UK debut of all time and climbed to the top of the Billboard Charts.
It wasn’t until she turned 51 that she got diagnosed with Asperger’s Syndrome.
Daryl Hannah
She is an American actress and environmental activist.
She is known for her roles in Splash, Kill Bill, Wall Street, and Steel Magnolias.
Hannah revealed that the cause of her extreme social anxiety was Asperger’s, a condition she has been dealing with for years.
Dawn Prince-Hughes
She is an American anthropologist, primatologist, and ethologist.
She is the author of several books including Songs of the Gorilla Nation: My Journey Through Autism.
At 38, she was diagnosed with autism and argued that her work with gorillas helped her develop certain coping mechanisms.
Heather Kuzmich
In 2007, she rose to fame as a contestant in America’s Next Top Model.
She was diagnosed with Asperger’s Syndrome at the age of 15 and has discussed her difficulty in dealing with it in some challenges throughout the competition.
Kuzmich then signed to Elite Model Management.
Jessica Jane Applegate
She became the first British woman with Asperger’s to win a gold medal at the Paralympic Games.
She brought home the gold for the Women’s 200m freestyle at the London games.
Applegate started to compete regularly by the age of 10.
World Autism Awareness Month
World Autism Month is celebrated every year in the beginning of the month of April. The United Nations sanctioned World Autism Awareness Day (WAAD) on April 2nd. This year marks the 16th annual WAAD.
SOURCES:
Autism Speaks (n.d.). Autism Statistics and Facts. Autismspeaks.org. https://www.autismspeaks.org/autism-statistics-asd
Burch, K. (2022, November 9). Autism in Adult Women: How to Identify the Signs. Insider. https://www.insider.com/guides/health/mental-health/autism-in-women
Szalavitz, M. (2016, March 1). Autism--It's Different in Girls. Scientific American. https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
WHO (2023, March 29). Autism. Who.int. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Marschall, A., PsyD (2023, January 12). Should You Say “Person With Autism” or “Autistic Person?". Verywellmind.com. https://www.verywellmind.com/should-you-say-person-with-autism-or-autistic-person-5235429
Rossi, C. (2022, November 29). The Autistic Brain. Psycom.net. https://www.psycom.net/autism-diagnosis-meaning
Wikipedia (2023, March 29). Neuroanatomy. En.Wikipedia.org. https://en.wikipedia.org/wiki/Neuroanatomy
Hughes, J. (2011, April 4). Autistic brains "organised differently" say scientists. Bbc.com. https://www.bbc.com/news/health-12937009
Stoodley, C. J. (2014, May 20). Distinct regions of the cerebellum show gray matter decreases in autism, ADHD, and developmental dyslexia. Pubmed.Ncbi.nlm.nih.gov. https://pubmed.ncbi.nlm.nih.gov/24904314/
Autistic UK (n.d.). Neurodiversity. Autisticuk.org. https://www.autisticuk.org/neurodiversity
Lynch, C. L. (2019, May 4). “Autism is a Spectrum” Doesn’t Mean What You Think. Neuroclastic.com. https://neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/
AbleLight (2022, May 2). Why the Autism Wheel is replacing the Spectrum. Ablelight.org. https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/
Trafton, A. (2022, September 8). Studies of autism tend to exclude women, researchers find. News.mit.edu. https://news.mit.edu/2022/studies-autism-women-bias-0908
Drake, K. (2022, April 19). Masking in Autism: The ‘Why’ Matters. Psychcentral.com. https://psychcentral.com/autism/autism-masking-why
Cook, J., Hull, L., Crane, L., & Mandy, W. (2021, March 30). Camouflaging in autism: A systematic review. Sciencedirect.com. https://www.sciencedirect.com/science/article/abs/pii/S0272735821001239
Intercare (2021, February 4). What is autism masking and why are girls diagnosed less often than boys? Intercaretherapy.com. https://www.intercaretherapy.com/blog/what-is-autism
Raymaker, D. (2022, March 1). Understanding autistic burnout. Autism.org.uk. https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout
Cassidy, S., Bradly, L., Shaw, R., & Baron-Cohen, S. (2018, July 31). Risk markers for suicidality in autistic adults. Pubmed.Ncbi.nlm.nih.gov. https://pubmed.ncbi.nlm.nih.gov/30083306/
Davis, H., Ph.D (n.d.). Autism In Women: Here’s What You Need to Know. Adultautismcenter.org. https://adultautismcenter.org/blog/autism-and-women-heres-what-you-need-to-know/
Yahoo Life (2015, April 1). 14 Amazing Women With Autism. Yahoo.com. https://www.yahoo.com/lifestyle/14-amazing-women-autism-162050408.html