04/2022 Edit: Since this blog was first published, the ubiquity or trans experiences among Autistic people has become more and more evident, as has the idea that not only women mask. As a result, it is likely better to not view these issues in terms of male/female or men/women/ or masc/femme, but as high masking vs. low masking. Because this issue is usually framed as a women's issue, and in many ways it is, the language of this being a particular presentation of women is still used, with the addition of "high masking" to account for changes in understanding and to be more inclusive of trans people.
While epidemiological studies suggest there are many more Autistic men than women (about 4:1), new research combined with testimonials of many hidden Autistic women suggest that the large sex-gap is incorrect. The diagnostic criteria for identifying Autism in the Diagnostic and Statistical Manual of Mental Disorder - Fifth Edition (DSM-5; American Psychiatric Association, 2013) is highly male-centric. This continues a long trend in medical and psychological research of basing experience from men's standpoint. The result of this is common diagnostics miss women. For example, Lai et. al. (2011) found the ADOS-2, broadly considered the gold standard in autism assessment, correctly identified autistic women 20% of the time. A recent study found similar results using a computerized version of the ADOS-2 (Rynkiewicz et. al. 2016).
Part of the problem is that the entire basis of the DSM-5, that meaningful diagnoses can be given based only on observable symptoms, is completely insufficient for identifying the problems that bring clients into the consulting room. What is missing is an important subjective dimension - the lived experiences of our clients in informing how they are to be treated. When we honor this, diagnosis and treatment become a meaningful conversation between clinician and client as opposed to an all-knowing professional making proclamations from on-high.
Another reason diagnosis can be difficult is that many autistic people learn to cope with or hide their neurology, thus making professionals ignorant to their struggles. This is especially true of Autistic women, but can occur in autistic people of all genders. This process is called masking/camouflaging and may be thought of in terms of people who are "high maskers" or "low maskers." Indeed, there is even an assessment tool - the Camouflaging Autistic Traits Questionnaire (CAT-Q) that measures this tendency.
Autistic women and other high maskers appear to be more socially adept than low maskers. Like their low masking counterparts, they are susceptible to making errors when expected to conform to Neurotypical social norms and are easily overwhelmed in social situations. However, unlike their low masking counterparts, Autistic women and other high maskers tend to be much more socially motivated. Because of this, they tend to learn how to fit in. They are careful studies of social interactions and have learned to copy social behavior. They learn to camouflage more typically autistic behaviors in many situations, a process often leading to excessive anxiety and depression. Because these Autistic women and other high maskers are essentially faking neurotypicality, it takes a lot out of them. It is a costume that feels constraining and hot to the point of crushing. Many professionals miss this key diagnostic feature as a result.
Autistic women and other high maskers become easily overwhelmed and tend to isolate for long periods of time; or they can become hyper-focused on specific interests as a manner of coping with anxiety and a highly sensitive nervous system. Whereas Autistic men tend to have more narrow interests such as a fixation on a certain type of vehicle, road maps, or weather patterns (but not always), Autistic women and other high maskers' fixations tend to be more gender conforming and broad, and are therefore missed as diagnostic. Some examples of these fixations include fantasy novels, specific TV shows, fashion, music, body image, or animals. Also, because many Autistic women and other high maskers have been shamed or have been told they are annoying for talking about their special interests (called SpIns in online Autistic culture), many have learned to hide these behaviors from the social world.
These SpIns are different from a hobby in a number of ways. First, engagement with these interests may be a primary way of making sense of the world. For example, social situations and other people may be understood as similar to favorite characters in Star Trek or Game of Thrones. Also, these intense interests tend to take on a dimension of identity for autistic people - they may only feel a sense of self while engaging with their interests whereas everywhere else they are playing a role. There can also be difficulty leaving these interests "at home," so to speak, or transitioning away from interests once engaged. It is as if there is always an internet tab of these interests open in the autistic mind. SpIns become comforting friends when out in a chaotic and often dangerous world. One Autistic woman I know is a passionate photographer - her phone storage constantly needing expanding as it is filled with pictures. This woman scans through her 1000s of pictures while in social situations as a way to screen out the rest of the world. To others, she looks like any other person engrossed in their phone. To her, it is an essential mode of survival. One reader of a previous version of this article cautioned me that although special interests are wonderful, they can also have a dysfunctional preservative quality that makes it difficult to attend to other tasks and can lead to burn out.
Finally, many professionals base Autism diagnoses on the concept of "theory of mind." In essence, early studies of autistic children (mostly males) showed they were unable to conceptualize that others' minds contained different perspectives from theirs. Newer research has shown that, if properly motivated, many Autistic children do, in fact, have theory of mind - they just do not recognize that they need to use it (e.g. see Chevallier, https://www.linkedin.com/redir/general-malware-page?url=et%2eal%2e 2012). Also, many Autistic people develop theory of mind later in life. Since this blog was first published, a new set of data and analyses have found the entire research base on theory of mind as applied to Autistic people is full of holes and likely ought to be expunged (Gernsbacher & Yergeau, 2019).
Because Autistic women and other high maskers are socially motivated, they tend to have very good theory of mind. In fact, because of histories of rejection, an ability to hyper-focus, and being very sensitive to minute changes, Autistic women and other high maskers may actually have overcompensated, thus possessing superior theory of mind at times. Many Autistic women and other high maskers are highly intuitive and may identify as being an "empath." Finally, new research is showing that theory of mind "deficits" work both ways; that is Neurotypical people struggle understanding the mind of Autistic people and vice versa. But because being Neurotypical is the majority, only Autistic people are labeled as having deficits (e.g. see Milton, Heasman, & Sheppard, 2018). This has spurned an entire field of research on what Autistic researcher Damian Milton has called the "double empathy problem."
Like low maskers, Autistic women and other high maskers are susceptible to meltdowns, sensory overwhelm, and anxiety. Because this can look like extreme moodiness, these folks are often misdiagnosed with Bipolar Disorder. Also, many Autistic women and other high maskers' relationships tend be “all on” or “all off." They can vacillate between intense interest and focus on loved ones to social withdrawal due to overwhelm or losing trust in others. Because of this, they are frequently misdiagnosed as having Borderline Personality Disorder. Autistic people, in general, require familiarity and as a result are often diagnosed with Obsessive Compulsive Disorder (OCD). And while OCD can co-occur with Autism, the diagnosis alone often misses the primary reason for needing rituals and consistency. Autistic people are sometimes also misdiagnosed with Schizophrenia. Autistic meltdowns, withdrawal, and sometimes experiencing of hallucinations when overwhelmed may be mistaken for an active psychotic disorder. Finally, autistic people in general have difficulty with executive functioning and focusing on non-preferred topics leading frequently to an incorrect Attention Deficit/Hyperactivity Disorder (ADHD) diagnosis, or a correct ADHD diagnosis that fails to incorporate co-occurring Autism.
As a result, Autistic women and other high maskers are treated like mental patients and are given strong drugs that interact poorly with their extra sensitive nervous systems - often resulting in worse psychological problems. Simply informing and educating these individuals about their diagnosis can bring about immediate positive change. Accurately identifying Autism helps these folks view themselves as quirky and sensitive people, part of a clan consisting of influential and artistic people, instead of lifelong mental patients or defective humans.
Some common experiences of females on the spectrum are:
1. Feeling like they are aliens, faking fitting in.
2. Moving from social group to social group throughout life because they cannot find a place to fit in. They can blend in for short periods of time, but end up being overwhelmed and rejected when embodying their authentic Autistic selves.
3. Social/sensory overwhelm above and beyond social anxiety – their brains may literally turn off or dissociate to avoid the bombardment of social stimulation, resulting in mutism or outbursts.
4. Sensory issues: Hyper-sensitive to touch (for example cannot wear certain fabrics, bothered by rumples in bed sheets, or require intense deep pressure to help regulate their anxiety), highly sensitive to smell (for example intolerance for any body smells or being able to smell bad food before others), light sensitivity, and picky eating due to difficulties with certain food textures and tastes, auditory sensitivity to loud sounds or normal social sounds like chewing.
5. Many can be academically gifted in some areas, but strangely incapable of doing well in others.
6. Often confused at work because they are able to get the job done and perform well, but cannot fit in socially and are seen as a poor team player.
7. Affinity for animals or objects over humans (sometimes manifesting in odd collections that may somewhat resemble hoarding or in owning many pets).
8. Perceived to be snobby or self-centered because of difficulties with typical “back and forth” of social interactions and a blunt and direct communication style.
9. Eating Disorders: There is a very high rate of eating disorders in Autistic women. Some of it has to do with sensory issues around textures, tastes, and smells. The need for routine and control is also often present. But often it is a manifestation of a dire need to fit in and avoid being bullied/rejected as Autistic people tend to internalize social messages in a literal manner. Conversely, many Autistic women overeat as a manner of stress relief or as a socially appropriate oral "stim."
Transgender/queerness: compared to the Neurotypical population Autistic people have very high incidence of being trans or queer. Some initial research has found rates up to 40% on some online questionnaires. Gender, being a largely social construct, may not even be experienced meaningfully by many Autistic people who don't "get" social constructs.
For more information, please see www.neuorclastic.com and neuroqueer.com. Understanding of Autistic women and other high maskers is still in its infancy. As such, unless a professional has specific interest or training in identifying Autistic women and other high maskers, they are likely to miss important nuances of the condition and give an incorrect diagnosis. If this resonates with you or describes one of your clients, I am available to provide assessments and consultations.
Dr. Joel Schwartz is a Clinical Psychologist in Arroyo Grande who co-runs www.TotalSpectrumCounseling with his wife, Brittany Boveé Schwartz, LCSW. All of Total Spectrum Counseling's clinicians are neurodivergent. We do video based therapy and assessment with anyone in CA or CO.