This year's International Women's Day (IWD) theme asks for a "commitment to choose to challenge inequality, call out bias, question stereotypes, and help forge an inclusive world." [i] grit & flow joins the IWD 2021 call to action, today and every day, to "Choose to Challenge" organizations to become more inclusive and foster a sense of belonging in the workplace where everyone can thrive. We maintain a steady focus throughout the year on autistic womxn and the bias, challenges, and discrimination they sometimes feel in the workplace. We incorporate their stories, challenges, and struggles into all our projects, but we would not miss the chance to join in on today’s international focus on womxn to share what we have learned.
Historically, women have been left out of or minimized in scientific research and study. As an autistic woman myself, I have learned that much of our makeup is still a mystery from our bodies to our minds, and if not a complete mystery, there is still a lot left to understand. Autism is no different. There remains bias in the world concerning how autistic womxn present and receive their diagnosis. With little research conducted into the lives and experiences of autistic womxn, a great degree of misunderstanding remains.[i]
Currently, the lens that we view autism through is male. Researchers developed the diagnostic criteria of autism through research that excluded women and focused primarily on men and boys. Autistic womxn once were viewed as having an "extreme male brain."[ii] Media is also part of the culprit in our social understanding of autism as autistic representation on screen is limited to men and boys often portrayed in a stereotyped fashion. The issue of autism thought to belong to boys has created a backlash for autistic womxn. Research has reported that women are met with disbelief when they open up about their autism diagnosis.[iii]
Misdiagnosis in Autism
“I actually have had almost every single mental health diagnosis that exists, prior to getting my autism diagnosis ran the gamut first started in junior high.” - Carly
Since many still believe that autism only affects males, boys' parents are more likely to know about autism and what signs to look for than parents of girls.[iv] Research has stated that women often need to present with multiple, compounding issues to be diagnosed early in life. Boys with an IQ below 70 are diagnosed as autistic more frequently than girls with the same IQ level or lower.[v] In line with the above-described bias, boys who experienced eating issues were more likely to be diagnosed than girls with the same challenges.[vi] Science has now learned that nearly a quarter of women who are anorexic are also autistic and that anorexia may be a marker for diagnosis or a result of experiencing mental health challenges from being undiagnosed.[vii] Until we change our understanding of who is impacted by autism, and how, these biases will remain.
Searching for Answers:
Many women are overlooked or have difficulty receiving an autism diagnosis. Autistic women typically are misdiagnosed with ADHD,[i] depression, anxiety, bipolar disorder, borderline personality disorder,[ii] and eating disorders.[iii] Researchers also reported an initial misdiagnosis prevented or delayed women from receiving an accurate diagnosis of autism.[iv] Without a proper diagnosis, girls spend longer wondering why they do not fit in, which damages their self-esteem and view of the world around them. When women cannot receive a diagnosis, or they are misdiagnosed, they go without the support and understanding needed to be successful.
Many of my friends and acquaintances who are autistic or suspect they might be, share varied experiences with getting a diagnosis. For some, doctors told them to pursue a diagnosis after their children received one. A handful mentioned that professionals withheld an autism diagnosis because they did not seem “autistic enough.” Most of them say they initially received a misdiagnosis. Some friends altogether do not believe they are autistic because they do not present in the stereotypical fashion (e.g., withdrawal, isolation, lack of
desire to make friends or socially engage, restricted interests, repetitive movements, etc.). Research backs up and supports many, if not all, of these statements.[v]
Society has a large stake in how we grow and see ourselves in the world around us. Prescribed gender roles have long existed, and social conditioning starts early. To that point, science remains unsure about how much our environment influences our development. Still, the impact may be large enough to account for some of the differences between how autistic men and non-men present. It is often the case that womxn are raised from a young age to be polite and engage with those around them in conversation, impacting how we view them. For example, a man may sit among a group of socializing people but choose not to join in, and others may view him as "stoic" or "the strong silent type". In contrast, if a woman sat among a group of people socializing and chose to sit by quietly, folks around them would likely perceive that they are upset or being snobbish and aloof.
Is social etiquette what gives women the ability to camouflage their autistic behaviors or is a part of our brains different? Autistic womxn tend to mask much more than men, which is one reason they fly under the diagnostic radar.[vi] Another reason might reside in the finding that autistic girls and women use mimicry to fit in among their peers, contributing to their ability to seem non-autistic during a diagnostic interview.[vii] Providers have withheld a diagnosis because non-men were perceived as too articulate to be autistic.
Camouflage - Video
“I used to do it, unknowingly. I didn't realize that was why being social was so exhausting all the time.” - Alexander
Camouflaging abilities also impact a womxn's access to support because often, they do not seem to need help. Furthermore, some have been so good at compensating for the challenges that autism presents that they are overlooked when they reach out for help. For example, even when viewing boys playing at the playground from a distance, their social communication struggles are apparent. From that same distance, autistic girls appear normal until a closer examination of the quality of their peer relationships reveals social challenges.[viii]. Autistic women are often more socially engaged than autistic men and maintain more friendships.[ix]
Camouflage - Video
"I think that I'm doing it (camouflaging) in order to protect myself, even when there actually isn't necessarily any real harm." - Deanna
Camouflaging can have severe and long-lasting effects that compound the challenges of being diagnosed later in life. Like many women, I was diagnosed while experiencing what is known to autistics, and more recently, the research community as autistic burnout. Research characterizes burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimuli.[x] It uproots and disrupts all areas of life, and recovery can take a long time, even years. Burnout reportedly is caused by life stressors, barriers to support, and expectations outweighing abilities.[xi] The experience of burnout can lead to suicidal thoughts and increased rates of suicide.[xii] The incidence of burnout would decrease if women were diagnosed earlier in life, provided the necessary support, and taught how to support themselves and their mental health.
Life in the Dark:
The struggles faced in receiving a diagnosis have long-lasting adverse effects. Some autistic women lose trust in professionals and the medical world due to negative experiences.[i] I received a misdiagnosis of social anxiety disorder in my early twenties and struggled with extreme anxiety and panic attacks nearly every day. Despite years of expressed difficulty fitting in, sensory overload, narrow food interests, the tendency to forget to eat, and trouble with socialization, no professional mentioned autism. After reading some articles about autism, something clicked. I brought up my suspicions, and the professional agreed that autism was a possibility, and the diagnostic process began.
My autism diagnosis ushered in a much clearer understanding of myself. One may think that receiving an autism diagnosis would be crushing, and for some, it is, but for me, it was the key to all the locked doors. As I looked back on my life through journals and notes from friends, I began to reframe experiences with my new lens of understanding. Soon after, a feeling of relief came over me as I realized, like many other women, that I am not broken, sick, or incredibly different, I am autistic. Feeling validated and reframing the past are everyday experiences of late-diagnosed women and reported in research.[ii] I imagine that I would not have experienced so many struggles in life had I been diagnosed earlier. Research has highlighted that a lack of diagnosis impacts how women understand themselves. Some have stated that knowing "might have made them slightly kinder to themselves and aware of their limits."[iii]
In closing, the biggest reason we need to have the ability to identify and diagnose autistic women at a younger age is the high prevalence of victimization. Many autistic women, including myself, have unknowingly ended up in dangerous, high-risk situations. For many of us, this is because we have difficulty interpreting others' bad intentions.[iv] As a result, autistic women experience higher bullying rates, abuse, trauma, and suicidality than their peers. Therefore, through no fault of our own, we may encounter situations that scar us for life and reduce our ability to be successful and happy, to be truly loved and fulfilled. Research has reported that rates of suicide are high in the autistic community. Science needs to rectify the bias in autism research that has left womxn in the dark – their very lives are at stake.
Here at grit & flow, we spend time talking and communicating with neurodivergent individuals to best understand their triumphs and challenges as well as how they are best supported in the workplace. Our neurodivergent team members offer further experiential knowledge to organizations to inform them on how to best support a cognitively diverse workforce. We combine the information we have learned from the community with published research to illustrate the best path towards accomplishing diversity, equity, and inclusion goals. Our main goal is to establish sincere belonging and organizational success.
Throughout the month, starting today, International Women's Day, we will be focusing on autistic womxn in the workplace. Each week focuses on a different topic that impacts autistics. We will release segments of interviews with neurodivergent individuals and published papers written by an autistic. Visit grit & flow's LinkedIn site to stay connected to snippets of interviews and this month's content on Autistic Womxn in the Workplace.
[i] Moseley, R. L., Druce, T., & Turner-Cobb, J. M. (2020). 'When my autism broke ': A qualitative study spotlighting autistic voices on menopause. Autism, 24(6), 1423-1437. DOI: 10.1177/136236.1319901184, 1427 [ii] Leedham et al., 2020, 139 [iii] Moseley et al., 2020, 1428 [iv] Bargiela et al., 2016, 3288 [i] Estrin et al., 2020, Barriers, no page # [ii] Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146. https://doi.org/10.1177/1362361319853442,137 [iii] Westwood, H., & Tchanturia, K. (2017). Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review. Current psychiatry reports, 19(7), 41. https://doi.org/10.1007/s11920-017-0791-9 [iv] Estrin et al., 2020, Barriers, no page # [v] Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46, 3281-3294. DOI 10.1007/s10803-016-2872-8 [vi] Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, 2017). 'Putting on my best normal': Social camouflaging in adults with autism spectrum conditions. Journal of Autism Development, 47, 2519-2534. DOI 10.1007/s10803-017-3166-5, 2520 [vii] Ibid, 2520 [viii] Estrin et al., 2020, no page # [ix] Bargiela, et al., 2016, 3282 [x] Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M, Santos, A. D. … Nicolaidis, C. (2020). 'Having all of your internal resources exhausted beyond measure and being left with no clean-up crew': Defining autistic burnout. Autism in Adulthood, 2(2), 1-16. http://doi.org/10.1089/aut.2019.0079,5 [xi] Ibid, 6 [xii] Ibid, 9 [i] Taylor, J. L. & DaWalt, L. S. (2020). Working towards a better understanding of the life experiences of women on the autism spectrum. Autism, 24(5), 1027-1030. [Editorial]. DOI: 10.1177/136236.3209.3754 [ii] Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive Science, 6(6), 248-254. DOI 10.1016/s1364-6613(02)01904-6 [iii] Estrin, G. L., Milner, V., Spain, D., Happe, F., & Colvert, E. (2020). Barriers to autism spectrum disorder diagnosis for young women and girls: A systematic review. Journal of Autism and Developmental Disorders, 7(4). https://doi.org/10.1007/s40489-020-00225-8 [iv] Ibid, no page # [v] Ibid, no page # [vi] Ibid, no page # [vii] Brede, J., Babb, C., Jones, C., Elliott, M., Zanker, C., Tchanturia, K. … Mandy, W. (2020). “For me, the anorexia is just a symptom and the cause is the autism”: Investigating restrictive eating disorders in autistic women. Journal of Autism and Developmental Disorders, 50, 4280-4296. https://doi.org/10.1007/s10803-020-04479-3, 4281