January 21, 2015
While it is true that there seems to be many more autistic males than females, new research combined with testimonials of many hidden autistic women suggest that the sex-gap may be narrowing. The diagnostic criteria for identifying autism in the DSM is highly male-centric. This continues a long trend in medical and psychological research of basing experience from a male standpoint. For example, Lai et. al. (2011) found the ADOS-II, considered the gold standard in autism assessment, correctly identified autistic females 20% of the time. A recent study found similar results using a computerized version of the ADOS-II (Rynkiewicz et. al. 2016).
Part of the problem is that the entire basis of the DSM, 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 the all-knowing professional making proclamations from on-high.
Another reason diagnosis can be difficult is that many autistic people learn to cope with their neurology, thus blinding professionals to their struggles. This is especially true of autistic females. Autistic females appear to be more socially adept than autistic males. Like their male counterparts, they frequently make social mistakes and are easily overwhelmed in social situations. However, unlike their male counterparts, autistic females 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. However, because they are essentially faking social competence, 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 females become easily overwhelmed and tend to isolate for long periods of time or get hyperfocused on specific interests as a manner of coping with anxiety and an over-sensitive nervous system. Whereas autistic males tend to have highly narrow interests, such as a fixation on a certain type of vehicle, road maps, or weather patterns, female 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. What differentiates this from a hobby is the extreme fixation and inability to “leave it at home” when out in the world. Also, because many females have been shamed or have been told they are annoying for talking about their intense interest, many have learned to hide these behaviors from the social 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.
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 were different 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, et.al. 2012). Because autistic females are socially motivated, they tend to have very good theory of mind. In fact, because of histories of rejection, an ability to hyperfocus, and being very sensitive to minute changes, autistic females may actually have overcompensated, thus possessing superior theory of mind at times. Many autistic females are highly intuitive and may identify as being an "empath."
Like autistic males, autistic females are susceptible to meltdowns, sensory overwhelm, and anxiety. Because this can look like extreme moodiness, autistic women are often misdiagnosed with Bipolar Disorder. Also, many autistic women's relationships tend be “all on” or “all off." They can vacillating between intense interest and focus 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, which often misses the primary reason for needing rituals and consistency. Finally, autistic people in general have difficulty with executive functioning and focusing on non-preferred topics, leading frequently to an incorrect ADHD diagnosis. As a result, autistic females are treated like mental patients and are given strong drugs that interact poorly with their extra sensitive nervous systems, often making them worse. Simply informing and educating these individuals about their diagnosis can bring about immediate positive change. It allows these women to view themselves as quirky and sensitive people, part of a tribe consisting of influential and artistic people, instead of lifelong mental patients.
Some common experiences of females on the spectrum are:
- Feeling like they are aliens, faking fitting in.
- Moving from social group to social group throughout life because they cannot find a place to fit in
- Social overwhelm above and beyond social anxiety – their brains may literally turn off or dissociate to avoid the bombardment of social stimulation
- Sensory issues – hypersensitive 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.
- Intelligent and complex, but strangely incapable of doing well in certain subjects.
- 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.
- Affinity for animals or objects over humans (sometimes manifesting in odd collections that may somewhat resemble hoarding or in owning many pets).
- Perceived to be snobby or self-centered because of difficulties with typical “back and forth” of social interactions and social rigidity.
- Transgender phenomena: compared to the neurotypical population autistic females have greater incidence of transgender issues. This may have something to do with the “extreme male brain” theory of autism proposed by Baron-Cohen. However, this idea has significant criticism. Recent evidence suggest that males on the spectrum are also prone to being transgender.
For more information, I highly recommend Aspergirls by Rudy Simone and the books of Tania Marshall. Understanding of autistic females is still in its infancy. As such, unless a professional has specific interest or training in identifying autistic females, 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.
This article was written by Dr. Joel Schwartz click here to view the original article