Belcher provides terminology and underscores identity-first language (autistic person(s)) (3:36). She uses the terms ‘male’ and ‘female’ because the majority of available research uses this binary lens. However, she notes that many autistic people do not identify with these labels. The speaker outlines key content (5:38) and notes that these topics have been discussed anecdotally for decades. However, she states that today, we don’t deal with anecdotes; it’s time for real numbers and research.
What we know about autistic females:
Autism has historically been considered a male disease, and consequently, the voices of women are largely absent from the research literature (7:38). Due to this imbalance in literature and, subsequently, in our foundational understanding of autism, an accurate description of autistic females does not exist (6:00).
“From the beginning, we have not included women in the research or built our systems and conceptions of autism around their experiences.”
The foundations of current diagnostic systems
The speaker describes gender imbalances in the original description of autism and the validation of the Autism Quotient (AQ), the primary diagnostic screening tool in the UK (8:54). She outlines recent studies that revealed the AQ does not measure identical traits in males and females (9:48) and that the ADOS-2, a golden standard assessment, shows signs of significant gender bias (11:11). Therefore, Belcher states the very foundations of current diagnostic systems innately lack the female perspective.
The female phenotype theory
The Female Phenotype Theory asserts that autistic males and females express autistic traits differently (13:20). Belcher briefs findings that support this theory and concludes that autistic females present as much more social than their male counterparts, which contrasts the idea of autism as a “social disorder” (15:25) and supports the gender biases revealed in the AQ and ADOS-2.
To determine if there is a female phenotype, researchers investigated 243 diagnosed autistic women and 767 potentially undiagnosed women (PUW), hypothesizing that PUW would present as more exaggerated in these social areas (missed by assessments) (17:30). PUW scored significantly higher on empathy and general functioning measures than diagnosed women. This suggests, Belcher states, that social abilities may be an aspect of the different autism phenotypes. This challenges the idea that autistic people lack empathy and always have a talent for systemizing things (18:20).
Masking and mental health
Masking is when autistic individuals hide or compensate for their autistic traits to appear more “normal” and fit in with others (19:30). The speaker describes a study assessing differences in first impressions of autistic men and women in a group of people who didn’t know their diagnoses (24:40). Results showed that autistic females rated better than males, that self-reported masking was not related to impressions, and that better first impressions are related to age at diagnosis. Belcher posits that these findings suggest some unconscious physical presentation of autism that affects the age of diagnosis and that non-autistic people pick up on these behaviors (25:40).
Masking significantly predicts suicidal behaviors in autistic individuals and positively correlates with depression and anxiety. Belcher describes how relentless self-monitoring (conscious or not) and adapting to social situations with different people all day is exhausting and leaves little time for self-expression or care (30:05). Therefore, Belcher insists,
“We need to minimize and move the onus of fitting in from autistic people masking toward non-autistic people learning to accept autistic people as they are. Consequences are severe if this is not the case… masking natural behaviors and traits denies expression of our true selves and identity.”
Misdiagnosis
Atypical autism presentations (not reported in the research or clinical knowledge) often lead to increased mental health issues and, subsequently, a diagnosis of other psychiatric conditions instead of autism (32:48). In fact, the speaker explains, autistic women often receive their diagnosis as the last in a series of mental health conditions, which is not the case for men (37:28). Borderline Personality Disorder (BPD) (aka emotion regulation disorder) is of particular concern for autistic women as the symptomology significantly overlaps with autism. Belcher describes a study that found 15% of patients attending a clinic for BPD fulfilled the criteria for autism (38:50). Such symptom overlap, coupled with the fact that BPD more often occurs in females, has created a clinical bias toward diagnosing BPD, leaving these individuals without the help and support they need (39:40).
What needs to change
To successfully support autistic women moving forward, Belcher says that clinicians need to have more awareness of different autism presentations and how the current tools may miss some cases or look like other conditions (41:38). Similarly, research must address the intersectionality among autistic adults. And finally, as a society, we need to help autistic people reduce the need to mask (42:55). Belcher gives thanks and acknowledgments before opening the question and answer session (45:10).