Jeremy Sharp, Ph.D.(1) interviewed Donna Henderson, Psy.D.(2) in his Testing Psychologist Podcast episode #119: Autism in Girls and Women. This podcast was aired on 5/19/2020(3), and it offers an in-depth discussion of differences (in research findings and clinical practice) between males and females with Autism, and why females with Autism are often not diagnosed. Though diagnostic issues related to gender outside the male/ female binary and related to race/ ethnicity abound, these differences were not addressed in this specific podcast. If you have the time and interest, give this podcast a listen. Highlights of the podcast are summarized below.
Why is it important to focus on diagnosis of Autism in girls and women specifically?
- Many girls and women are diagnosed with multiple conditions and are in therapy for years before their Autism is correctly identified.
- Autism is underdiagnosed in females, and when diagnosed, it is diagnosed almost two years later in females than in males with similar symptoms.
- Girls must exhibit more challenges and a greater degree of Autistic traits than boys, in order to be diagnosed.
- The ascertainment bias is present, as follows: if a study only includes people who presented to an Autism clinic and were diagnosed using traditional methods, girls are often excluded from the study (minorities are as well). Such studies include four to five males for every one female. In contrast, studies that screen the entire population find three males with Autism for every one female. Studies of Autism in the population instruct us that 39% more females should be diagnosed with Autism than are being diagnosed. When the Autism research is biased to include more boys, rating scales and tests are then developed to be more appropriate for males than for females, leading more females’ diagnoses to be missed.
- When Autism is identified in a population with Intellectual Disability, the ratio is about two boys with Autism to every one girl, whereas in Autistic people with average intelligence to above average (those previously diagnosed with Asperger’s Syndrome), the ratio is about nine boys to every one girl; we are particularly missing girls with average to above average intellectual functioning.
- Henderson notes that the DMS-5 criteria for Autism apply to females just as they do for males, but when performing assessment, you have to focus on specific questions that apply more frequently to girls in order to use the DSM-5 criteria effectively for girls and women.
- Camouflaging (masking) is the discrepancy between inner and outer behavior that occurs in both neurotypical and neurodivergent people. Females with Autism tend to be more proficient with camouflaging/ masking than are males with Autism, and it can help them in many types of social situations. This can be exhausting, and has been likened to doing mental math all day long. Camouflaging/ masking not only contributes to females being missed diagnostically, but can be damaging when it prevents them from living authentically.
How do Girls and Women with Autism Present Differently than Boys and Men?
Girls and women with Autism often present quite differently than boys and men with Autism, and Dr. Henderson detailed many of these differences. She noted that girls have fewer identified difficulties related to Autism than boys in their toddler years through early elementary school, and more difficulties as they get older (often around middle school). Some of the differences are further outlined below.
• Reciprocity in Conversation
Reciprocity in conversation is described as “social breadcrumbs.” When social cues (or breadcrumbs) are dropped in a reciprocal conversation, the other person picks them up and follows up on these cues. A conversation is also described like a ping-pong game; we have to take turns, and hit the conversational ball back and forth. Compared to boys, girls with Autism are described as more reciprocal, more engaged in conversations, and more likely to share their interests with others. These differences are especially true when girls are discussing topics of interest to them, and when they are one on one with a supportive adult. Girls with Autism tend to have more advanced imaginative and pretend play than boys with Autism. Girls and women with Autism tend to be able to manage social situations better than boys and men with Autism, but (importantly), they describe managing social situations as effortful and difficult (and this can lead to exhaustion and burnout over time).
• Relationship Management
Females with Autism have challenges with relationship management that differ from those often experienced by males with Autism. Girls may make friends more easily than boys with Autism, but not keep these friends over time. Some girls with Autism can keep friends that they have had for years (such as family friends), but not make new friends. Social flexibility (reading the situation and adapting to it as needed) is important in relationships. Some girls with Autism cannot intuitively speak to adults differently than they speak to their peers. Girls with Autism tend to show more social motivation than boys with Autism, and are much more likely to have one or two close friends. Girls with Autism tend to have closer friendships than boys with Autism, though less closeness with friends than neurotypical girls have.
• Nonverbal Communication
Females with Autism often have nonverbal communication challenges that are subtle to the observer, but uncomfortable and concerning to the Autistic female. Regarding eye contact in females with Autism, it’s important to know how she uses eye contact to manage interactions, and what her subjective experience of eye contact is. Others may not know this about her, but she may find eye contact distracting, have to remind herself to use it, feel uncomfortable with it, and may need to be reminded to do it. Girls may have more vivid gestures and more coordinated verbal and nonverbal communication than boys with Autism, but not be better than boys with Autism at reading others’ nonverbal cues. Dr. Henderson notes that at times, girls with Autism are exquisitely socially sensitive. They may be aware (for example) of a bad emotional feeling in the environment, but not able to discern what that feeling is (for example, she may jump to assuming someone is angry at her, when in fact the other person may be experiencing a very different negative emotion). When walking with others, girls with Autism may walk ahead, behind, or bump into others; they have more difficulty coordinating their bodies with others’ bodies than neurotypical girls. They may struggle with how to hug, hugging stiffly, and not melting into the hug. Some girls with Autism speak too softly, and frequently have to be told to speak louder. Though these challenges for Autistic females with nonverbal communication can be very difficult for them, males with Autism tend to have nonverbal communication challenges that are more obvious, increasing the difficulty of identifying Autism in girls and women.
• Repetitive and Restrictive/ Idiosyncratic Behaviors
Autistic males tend to exhibit repetitive and restrictive/ idiosyncratic behaviors more often and more obviously than females do. Autistic girls’ repetitive behaviors tend to include pacing, walking the perimeter of the playground, skin picking, twirling, reading the same book, watching the same movie, or drawing the same thing repeatedly. Scripted language is also common in girls with Autism. Inflexibility and rigidity appears different in females than in males. Whereas females tend to internalize more, males tend to externalize more. Rigidity in girls may likewise be more internalized, such as difficulty adjusting to change. Autistic girls may be rigid rule-followers at home or school or both, and unable to skip a book chapter or watch a movie out of order (even when movies do not need to be watched sequentially in order to make sense). Some Autistic girls cannot bend or break the rules. They may experience black and white thinking, which can appear as extreme perfectionism. They may concretely interpret language (not considering context), and need control over even minor decisions.
• Restricted Interests
Autistic boys are more likely to show atypical interests (for example, esoteric topics such as airport codes and train signals), whereas girls are more likely to have interests that are typical for neurotypical girls, but Autistic girls’ interests are more intense. For example, My Little Pony, K-Pop, fan-fiction, anime, manga, Taylor Swift and cosplay are common interests for girls with Autism and for neurotypical girls, but the intensity of the interest for Autistic girls tends to be above and beyond that of their neurotypical peers. Reading can be a restricted interest as well – Autistic girls may want to read in inappropriate places (ex: while at the dinner table, walking, and in the shower). These interests may not eclipse everything else the Autistic female enjoys, and she may have several focused interests, but the intensity of the interests tends to be notable.
• Sensory Challenges
Females with Autism tend to have more sensory challenges than males with Autism. However, because females tend to internalize these challenges more than males do, others may not be aware of the intensity of their struggles, so it is very important to ask them about their experience of sensory challenges. Sometimes, poor hygiene has a sensory component, related to not liking the feeling of wet hair, water on the body, or the texture or scent of toiletries. A “fear” of public bathrooms may actually be related to difficulty tolerating loud flushing toilets. Females with Autism may have an exceptionally high pain tolerance, and other challenges with interoception, like not knowing when they are hungry, or need to urinate.
Why are Girls and Women’s Autism Diagnoses Being Missed?
Dr. Henderson summarized some of the reasons girls and women who meet criteria for Autism are being missed by clinicians.
- Diagnostic clinicians are not thinking of Autism or testing for Autism in the girls or women they see.
- Signposts of possible Autism may be present – social problems, a history of being bullied, persistent anxiety or depression, context blindness, chronic headaches and gastrointestinal problems – but do not lead to Autism assessment.
- Diagnostic overshadowing is present: the phenomenon of letting prior diagnoses explain too much. Ex: “Of course she has no friends, she has Social Anxiety.”
- Behaviors that are commonly felt to be neurotypical lead the clinician to rule out Autism. Ex: the Autistic girl or woman exhibits good eye contact, has friends, or exhibits empathy. It is certainly possible to have Autism and traits or behaviors often considered neurotypical.
- Overreliance on any one assessment measure leads clinicians to miss an Autism diagnosis, particularly for females with average to above average intelligence
- Not soliciting the girl or woman’s subjective experience, and relying solely on her parents/ family to explain her symptoms (or lack of them).
- The absence of an in-depth social and developmental history.
If you believe you may have Autism, and you are aged 16 or older, feel free to contact me here regarding assessment: https://amyblackmonphd.com/contact/.