Women and Autism
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.
Far more boys than girls are diagnosed with Autism. While it used to be believed this was because it impacted boys at higher rates, emerging research is pointing to the fact that this may be due to the fact it is missed more often in girls. A recent study suggested that 80% of Autistic women remain undiagnosed at the age of 18.
Behavioral and Neuroimaging studies show that Autism manifests differently in girls. Notably, female social brains are often closer to NT boys' social brains (and their social abilities are similar to NT boys). (Szalavitz, 2016).
There is substantial evidence that the diagnostic processes are less likely to identify women, particularly in the absence of a co-occurring intellectual disability. Females with average to high IQs are particularly unlikely to receive a diagnosis of autism (Hull et al., 2020)
To receive a diagnosis, girls must be more significantly impacted by their traits Hull et al., 2020).
Based on twin studies, girls, on average, had to have more externalization behaviors and more intellectual disabilities than boys to receive a diagnosis of autism (Szalavitz, 2016).
Females fortunate enough to receive a diagnosis are, on average, diagnosed much later in life than males (Hull et al., 2020).
A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic. Autistic girls are less likely to meet these criteria even when clinically significant characteristics are identified. This often results in diagnoses of broader developmental disorders or internalization disorders rather than Autism specifically (Hull et al., 2020)
Autistic women and girls are more likely to experience more sensory issues related to Autism and will often present with less of the typical "social-communication" deficits (Moseley et al, 2018).
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:
Epilepsy
Endocrine disorders
Reproductive health issues
Neurological conditions
Metabolic disorders
Gastrointestinal issues
Nutritional issues
Immune and autoimmune conditions
Additionally, Autistic folks have an increased risk of:
Heart disease
Cancer
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:
challenges in social reasoning (not knowing when someone is taking advantage of us)
missing contextual cues (also makes it difficult to know when someone is trying to manipulate us)
a tendency to take things literally
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:
72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.
44% percent of participants met the criteria for posttraumatic stress disorder (PTSD),
50% of those who met the criteria for PTSD reported experiencing interpersonal traumas (IPT)
Autistic women and genderqueer people experienced a significantly higher number of traumas and were significantly more likely than cis-men to experience sexual intimate partner violence and meet the criteria for PTSD.
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.
Notes:
**A note about Gender Phenotypes: Over the last several years, increasing attention has been given to the "Female Autism Phenotype." I have found this very helpful for understanding my experience and am grateful for the attention finally being given to diverse expressions of Autism. At the same time, this language risks continuing to gender autism.
I find it more helpful to talk about different presentation styles. Some of the information below draws from this gendered way of seeing Autism. It is important to note, anyone (women, genderqueer, trans, men) can present with "masculine" presentations, and anyone can present with more "female" presentations of Autism (I know plenty white, cisgender men who present with so-called "female" autism). I hope this next wave of autism awareness will help us find language to articulate the different presentations of Autism in a way that moves beyond the gender binary.
***A Note About Gender language: Original article and infographic included AFAB and women. However, after learning more from the Trans community, I recognized the problematic nature of conflating these two concepts. So while many of the medical experiences described above will also apply to AFAB genderqueer people, I have opted to separate out these conversations. You can read more specific experiences about Trans Autistic experiences over here in this infographic.
When possible, I try to find research that includes genderqueer people (especially given the high percentage of genderqueer people within the Autistic community, however, most research is still done on the binary, which is one of the research biases that impacts genderqueer people.
Citations:
Arnold, Carrie. 2016. The Invisible link between autism and anorexia. Spectrum News. Retrieved at: https://www.spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/
Freeman, A., Mergl, R., Kohls, E. et al. A cross-national study on gender differences in suicide intent. BMC Psychiatry 17, 234 (2017). https://doi.org/10.1186/s12888-017-1398-8
Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884–898. https://doi.org/10.1177/1362361320912143
Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306–317 (2020). https://doi.org/10.1007/s40489-020-00197-9
Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z
Moseley, R.L., Hitchiner, R. & Kirkby, J.A. 2018. Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Molecular Autism 9, 33. https://doi.org/10.1186/s13229-018-0216-6
Reuben, K., Stanzione, C.M, and Singleton, J.L., Autism in Adulthood. Sep 2021.247-256. http://doi.org/10.1089/aut.2020.0073
Sedgewick, F., Leppanen, J. and Tchanturia, K. (2021), "Gender differences in mental health prevalence in autism", Advances in Autism, Vol. 7 No. 3, pp. 208-224. https://doi.org/10.1108/AIA-01-2020-0007
Szalavitz, Maia, 2016. Autism—It’s Different in Girls. Scientific American. Retrieved At: https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
Weiss, J. A., & Fardella, M. A. (2018). Victimization and Perpetration Experiences of Adults With Autism. Frontiers in psychiatry, 9, 203. https://doi.org/10.3389/fpsyt.2018.00203
Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. European child & adolescent psychiatry, 14(8), 431–437. https://doi.org/10.1007/s00787-005-0494-3