Hannah Belcher, Ph.D., Autistic researcher, speaker, and author, discusses the often late and missed diagnosis of autistic females. She dives into the gender gap inherent in autism research, assessments, and clinical understanding, demonstrating how this has led to late and misdiagnosis of autism in women. The speaker presents contemporary research working to uncover a female autism phenotype and discusses masking as implicated in mental health and diagnosis. Belcher continually asserts the societal need for greater understanding and accommodation of autistic womens’ lived experiences and outlines what needs to change before the question and answer session.
Learn more about our speaker Hannah Belcher, Ph.D. HERE
Take the knowledge quiz for this presentation HERE
In this webinar:
1:27 – About Hannah Belcher
3:09 – Taking off the Mask book highlight
3:36 – Language, terminology, and content warning
5:38 – Key content
6:00 – What do we know about autistic women?
7:30 – Missed diagnosis and current diagnostic basis
8:54 – Autism Quotient background
9:48 – Study: Autism quotient gender bias
11:11 – Study: Assessment measures gender bias
12:45 – Changing prevalence rates
13:30 – Autism gender gap
14:25 – Female phenotype theory
17:30 – Study: Diagnosed vs potentially undiagnosed autistic women
19:30 – Masking and hiding traits
22:45 – Why do autistic people mask?
24:40 – Study: First impressions of autistic women and men
27:29 – Effects of masking on mental health (personal flowchart)
30:05 – Why masking has this effect
34:23 – Clinician bias
37:28 – A hidden population
38:50 – Borderline Personality Disorder
41:38 – What needs to change?
45:10 – Closing, thanks, and Q & A
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.”
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).