Women and Autism
Women are less likely to be diagnosed AND more vulnerable to several risks associated with autism. These risks are magnified for those with additional marginalized identities. Women are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. It’s a bad equation!
Why Are We Missing Autistic Women?
A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin’s (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18.
Special Interests Culturally Blend In
Women and girls are more likely to go undetected as their special interests are more likely to culturally blend in as they may be interested in humanitarianism, religion, animals, people, pop culture (bands, popular movies etc.) (Hull et al., 2020). They are also less likely to present with the same social-communication differences and more likely to mask their differences and socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult (Hull et al., 2020).
Brain Differences in Autistic Females
Emergent research also suggests that autism impacts different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males.
Girls are more likely to experience impact in regions of the brain that affect fine motor skills, executive functioning, and emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022).
Below is a write-up of the challenges many of us experience. followed by the various risk factors associated with Autism in women (*see note at the end of the article for language and gender use). While articles referenced here don’t look at trans/BIPOC (a few include non-binary/genderqueer), we know from other studies these risks are even higher among BIPOC & Trans people.
While we are less likely to receive a diagnosis, we are more likely to have complications and risks associated with our Autism. That means we have a decreased ability to receive support and an increased risk of complications. This equation is not a good look. We have increased health, social, and mental health risks. Below is a summary of some of our risk factors:
Health Issues in Autistic Women
Autistic Women are more likely than their Neurotypical peers and autistic cis men to experience health issues. Without an autism diagnosis, it is more likely physical ailments will be minimized/dismissed or untreated. Health issues that are more prevalent among Autistic women include:
Additionally, Autistic folks have an increased risk of:
It is recommended by Kassee, 2020 that physicians regularly monitor and assess Autistic women for health issues. However, without an autism diagnosis, this is less likely to happen, and their medical team won’t know the importance of monitoring their systems.
Furthermore, many Autistic women may look like “healthy, young women” on the outside and therefore have their symptoms dismissed as “healthy anxiety.” A diagnosis helps a person’s medical team understand their physical vulnerabilities and helps a person advocate for their health.
Sensory and Physical Ailments in Autistic Women
Beyond the health risks listed above, many Autistic women people experience some form of chronic fatigue, migraines, and other physical ailments. Many have come to be treated as “hypochondriacs,” or symptoms may have been interpreted as “psychosomatic.”
Internalization Symptoms of Autistic Women
When we experience emotional pain, we typically do one of two things with it: 1) Turn it inward (internalization) or turn it outward (externalization).
Symptoms can either be internalized (turned inward) or externalized (turned outward). Examples of externalized behaviors are conduct disorders and angry outbursts. Depression and anxiety are more commonly turned inward and considered internalization of the pain.
Depression and anxiety are both considered internalizing problems common among Autism. Autistic girls and women are more likely to internalize symptoms, whereas boys are more likely to externalize (aggression, behavior difficulties, etc.). Notably, research demonstrates that the efforts that go into camouflaging can result in increased stress, anxiety, and depression (Hull et al., 2020).
Disordered Eating
Segewick et al., 2021 found that Autistic people were 2x as likely as non-autistic people to have an eating disorder. Disordered eating is a common form of internalization among Autistic women.
One study found that 70% of women in an inpatient eating disorder clinic had undiagnosed autism. While the rates vary, most researchers agree that about 23% of people diagnosed with anorexia nervosa are Autistic (Wentz et al., 2005). However, many agree that this is likely an underrepresentation because autism often goes undiagnosed within this population (Westwood and Tchanturia). For more about the similarities in between anorexia and autism, see The Invisible Line between Autism and anorexia (Arnold, 2016).
Victimization/Intimate Partner Violence and PTSD
Autistic women are more likely to be survivors of violent victimization. In one study, Autistic adults were 7.3 times more likely to endorse having experienced sexual assault from a peer during adolescence (Weiss and Fardella).
Some risk factors include:
These risks are highest among women and genderqueer people. Reuben et al., 2021 study included 687 self-identified Autistic people. They looked at interpersonal trauma and PTSD. Below is a summary of their findings:
Haruvi-Lamdan et al., 2020 found that autistic females reported more negative social life events than autistic men and had a higher likelihood of PTSD. Their researchers suggested Autistic women are at an increased risk of developing PTSD.
Suicide Risk for Autistic Women
A recent longitudinal study involving 6.5 million people found that autistics were 3x more likely to both attempt suicide and to die by suicide. Suicidality was particularly high among youth and young adults. They also found suicide risk was more elevated among women than men. Women on the spectrum are at a higher risk than both men on the spectrum and neurotypical females (South et al.)
One large study found that while Autistic men were 6.5 times more likely to die by suicide, Autistic women were 13 times more likely to die by suicide! (Hirvikosi et al., 2018). Autistic women are silently suffering while going missed and misdiagnosed at alarming rates.
Co-occurring Mood Disorders in Autistic Women
It is well documented that autistic people are more likely to have mood disorders (anxiety and depression) than allistic people. This is true across all genders. However, Autistic women and non-binary people had higher rates of depression and anxiety than men (and had similar rates to each other) (Segewick et al., 2021).
In summary, we are less likely to have social communication difficulties but more likely to have depression, anxiety, eating disorders, co-occurring health disorders, more debilitating sensory sensitivities, suicidality, self-harm, victimization, and PTSD.
Given the heightened emphasis on social-communication aspects of Autism, some may be skeptical of a person seeking diagnosis when they can “pass” as neurotypical. But there is so much more to Autism than social-communication patterns.
It’s time we rethink Autism presentations and diagnose and support all presentations. Accurate diagnoses and supports save lives.
Future Resources for Autistic Women
Intrigued about Autism and women? Below are a few of my favorite books that highlight the experience of autism and girls (affiliate links).
Divergent Minds: This book covers many different forms of neurodivergence, including Autism. The author does a good job of capturing the intersection of female identity and neurodivergence. This was one of the first books I read on my Autism self-discovery journey. Great for women who are self-discovered/diagnosed in mid-life.
Aspergirls: A great guide for girls, their families, and counselors looking to understand autism and girls. This book is written by an autistic girl and draws on her experience and 35 other Autistic women she interviewed. Would be a great handbook/guide for younger people new to diagnosis (and great for their parents).
The Awesome Autistic Go-To Guide: Written for teens and tweens. Not specifically for girls, but does a great job of including inclusive messages on autism. I appreciated how they naturally wove in gender and sexual diversity (given the high percentage of AFAB who are genderqueer, lesbian, or bisexual this is a must inclusion).
This podcast with Dr. Donna Henderson walks through the DSM-5 criteria for autism through the lens of girls and women.