I’ve diagnosed unrecognized autistic women for ten years and worked with them in therapy. These women are often successfully employed and married or with partners. They might have children and be involved in working with schools on their children’s behalf. Some might have struggled in jobs or relationships but can’t put their finger on why. What they have in common is their sense of being different, of never having fit in. They often have diagnoses of anxiety disorders, depression, or ADHD, but they feel that there’s something missing, some part of themselves that’s unexplained.
When they were younger, they were teased for being different or quirky, and many faced a barrage of criticism for being inappropriate, rude, overtalkative, or too quiet. As adults, they are aware of the effort they put into navigating their lives, the stress they experience, and usually the exhaustion they feel. This sense of being different is often associated with a feeling of failure and shame that they’ve never managed to do what others seem to do effortlessly, even though they’ve tried.
Some of these women have children being diagnosed as being autistic. Watching their children’s diagnostic process, they recognize traits in themselves. When women searching for self-understanding hear of neurodiversity and start researching it, they recognize many of the feelings they’ve experienced and increasingly wonder if they’re autistic. They go to a mental health professional, who tells them definitively, “You can’t be autistic.” Many women describe being laughed at for even suggesting the idea.
Why do these clinicians miss identifying these women? There’s been a lot written about autistic women since 2013, finding that the assumed ratio of males to females having autism of 4:1 is more likely around 1.8 or 2:1. (Werling & Geshwin, 2013; Halladay et al., 2015). It’s been found that girls mask or camouflage, so they might not seem to meet the criteria for social impairment for a diagnosis (Jamison et al., 2017).
Even though this information is readily available, as are books and articles written by autistic women, most clinicians stick to an image of what autism looks like, especially in social interaction. A woman who engages with them in conversation, looks at them, and whose appearance isn’t awkward, flat or stilted in some way is “too normal” to be autistic. They’re told, “You don’t look like Sheldon” from the Big Bang Theory.
The mistake made is the idea that autism looks a particular way, which is a male stereotype. Women who camouflage don’t look like that, and clinicians often have their diagnostic consideration come to a dead stop when they decide that socially, she is “too normal” and “can’t be autistic.” They either fail to ask or don’t believe women, saying that they are exhausted by social interactions and often need to recover afterward. Women who have been searching for self-understanding feel invalidated and dismissed by these clinicians. It’s time that mental health clinicians caught up to serving these women well.
Why is this so important? Obviously, for women who have felt invalidated and misunderstood for their entire lives, this caps their sense of frustration and sometimes humiliation. They continue to have clinicians addressing their depression and anxiety, diagnosing them as having anxiety and mood disorders, ADHD, borderline personality disorder, or bipolar disorder, and taking medications based on those diagnoses. They are getting inappropriate or incomplete treatment, and their autistic experience and way of processing are dismissed as unimportant or (even worse to clinicians) as resisting therapy.
These women are struggling with the impact of autistic traits in their lives. Many can be successful at work, only to collapse with exhaustion when they’re home. They duck going to work-related social events because of the stress of having to interact while constantly watching and questioning themselves. They often ruminate over making social mistakes. Most find sensory sensitivities overwhelming and try to avoid triggering sensitivities to sound, light, smell, texture, and touch that result in sensory overwhelm. They struggle with adaptability to spontaneous change and to demands that they multi-task since they perform best, allowing their natural intense focus. Social, sensory, and task demands can be so overwhelming that women thought to be “performing well” might need accommodations to be physically and psychologically healthy.
Autistic ways of processing impact communication and understanding, especially with those who aren’t autistic, so relationships with neurotypical partners, husbands, or friends have typical problems. Small talk is meaningless and stupid, to be blunt. Autistic women don’t intuitively know what’s expected to maintain a relationship, so unexpressed expectations of how often one text or gets together can be missed. Autistic thinking is logical and analytic, so it makes sense that there’s a right way things should be done. This might be the most efficient, but partners can feel that they are being bossed around or that they must “walk on eggshells” trying to do things a right way. Autistic people are detail-oriented, and the details seem a critical part of understanding. An autistic partner might seem to go on and on to explain an idea, and the neurotypical partners might feel that there’s no room for their ideas. Autistic people are generally literal, so many arguments stem from the fact that neurotypicals often say things without worrying about precision; when they say they didn’t mean it, the autistic woman insists that they must mean what they specifically said, or they wouldn’t have said it. Autistic people are generally truthful and have strong moral standards, so family members or friends who aren’t honest, cut corners, or who seem to compromise moral standards may seem intolerable. Autistic people can miss unspoken inferences, while a partner can feel that she should have “known that” about expectations.
These issues are predictable and understandable if one knows that one partner is autistic. Sensitive partners usually already know how to warn about changes in plans or when making new plans. Without understanding, frustration can build up. A woman who wanted to please her husband would agree to join him with his friends and their wives at a bar, only to ask to go home after a half hour of small talk, noise, and smell. Her husband couldn’t understand why she didn’t want to stay with their friends and began to resent his nights being “ruined.”
Autistic women who don’t understand their autistic traits may feel that they just must “try harder” even in environments that are a poor fit. I interviewed one woman who was a nurse struggling to work in a brightly lit and noisy emergency room setting that required constant social interaction. She spent her weekends exhausted, in bed recovering. A woman who feels that her autistic traits are real because of the validation of a diagnosis can make changes in her environment. That nurse, understanding herself and accepting her sensory needs as valid, changed jobs to work in a small private practice setting that was a much less stressful sensory and social environment.
The world isn’t a neurodivergent-friendly place, and most autistic people must work to overcome the struggles it presents. They must manage being misunderstood and being seen as odd, quirky, or demanding. The focus is often on what they can’t or don’t do naturally. Having a diagnosis encourages them to embrace their differences and recognize their strengths. Autistic women have high standards and don’t do anything superficially. With encouragement, they can recognize the advantages of their detailed thinking and analytic abilities, their truthfulness, caring, and loyalty, their creativity and insightfulness from noticing things others miss, and the expertise that they have from having such deep interests in life.
A woman can look at her life experiences through the lens of neurodiversity and appreciate what seemed like failures were simply differences in neurotype. I encourage those I diagnose and see in therapy to think of themselves as having a different operating system: they are Macs and neurotypicals as PC’s. Both are good computers, but they are different. To quote Temple Grandin, autistic people are “different, not less.” Self-acceptance and self-compassion are vital to the emotional well-being of every autistic woman, and diagnosis is a first step. Autistic women should have the support and validation they’ve been lacking for years, and we need to evolve our understanding of what autism “looks like.”
Marcia Eckerd, PhD, has provided therapy, evaluation, and consultation for autistic individuals since 1985. She serves on the CT ASD Advisory Council and the Board of Directors of Autism Today! A frequent presenter on webinars and podcasts, she’s been featured at US national and international conferences, including AANE.org, the Autism Parenting Magazine National Summit, the US Autism Association, and the Autism Today! World Summit. She’s a prolific writer, and her journal articles on diagnosing autistic adults and autistic women are read internationally.
References
Halladay, A., Bishop, S., Constantino, J., Daniels, A., Koenig, K., Palmer, K., Messinger, D., Pelphrey, K., Sanders, S, Singer, A., Taylor, J. & Szatmari, P. (2015) Sex and Gender Differences In Autism Spectrum Disorder: Summarizing Evidence Gaps and Identifying Emerging Areas of Priority Molecular Autism 6:36 DOI 10.1186/s13229-015-0019-y
Jamison, R., Bishop, S., Huerta, M. & Hallady, A. (2017) The Clinician Perspective on Sex Differences in Autism Spectrum Disorders Autism 21(6), 772-784
Werling, D. & Geshwin, D Werling, D. & Geshwin, D. (2013) Sex Differences in Autism Spectrum Disorders Current Opinion In Neurology 26(2),146-153
