New perspectives are changing the face of autism

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It is becoming increasingly clear in research and in the public domain that autistic females are different from autistic males. The criteria for diagnosing autism originated based on the presentation of boys, leading to a gender-biased understanding of autism. Autistic females are underdiagnosed, particularly in individuals without an intellectual development disorder. Gender bias leads to fewer referrals for females, later diagnoses, missed diagnoses, and misdiagnoses. Missing a diagnosis can result in the development of mental and physical health issues and greater impairment across domains and across a patient’s lifespan. That’s a clinical description, but what about the person? Missing a diagnosis means they feel different, wrong, bad, invisible, or like they don’t fit into society, don’t have a place.

It is important to remember that people are unique, whether they’re autistic or not, so not everything will apply to any one person. Demonstrating patterns of behavior and traits is part of diagnosis, however, so generalizations can and will be made in order to help with understanding and support. Over the past decade, research has indicated differences in the presentation of autism in females. Autistic females are less likely to show the same repetitive behaviors, restricted interests, and social withdrawal seen in autistic males. These same traits can also be present but may look different in autistic females compared to males. Instead of classic repetitive movements and patterns in play such as rocking, flapping their hands, and fascination with parts of toys, females may twirl or pull their hair, pick their skin, skip, or gallop. They may be more perfectionistic, and have a need for sameness, routine, and inflexibility with change.

Autistic females are more likely to engage in pretend play than males, so a “yes” on a checklist that they can pretend may not be meaningful. Clinicians must ask about the quality of the play. Autistic females often have repetitive themes in their pretend play scripts, may have a need for the exact same dialogue and interaction each time, or a need for them to direct the play, eschewing spontaneity and input from their playmates. Sometimes they act out scenes from favorite movies, word for word, rather than playing “house” or “school” with improvisation.

Autistic females may have restricted interests, (e.g., intense interests in a topic, collections of something specific, or favorite movies, shows, or characters), but they often are socially accepted and similar to neurotypical females.

Autistic females are more likely to demonstrate social motivation (e.g., interest and desire for connection) and to develop friendships than autistic males. They may have one friend at a time, sometimes for years, or they may have one friend for a year and then change with each new school year. They may struggle to “share” friends and become overly possessive, as if their friends belong to them. Autistic females are more likely than autistic males to be able to understand and interpret the behavior and emotions of others, so they can imitate, but they often don't see the impact of their own behavior on interactions. Their struggle with insight often leads to social mistakes and rejection, and they may have no idea what they did wrong.

If autistic females are observing and trying to imitate “typical” behavior, but are literal thinkers and miss implicit communication, they can find themselves in a pickle, and not know where things went wrong.

Female roles in society generally define being “a good girl” or “ladylike” as following rules, being quiet and calm, and avoiding conflict. All of this requires emotional control, or self-regulation. Many autistic people struggle with this. They can suddenly be overcome by emotions such as anxiety, anger, and sadness, or overstimulated by sensory input, which can cause outbursts or unusual rigid behaviors. Difficulties managing stress and regulating emotions are not a part of the diagnostic criteria but can be some of the most impairing parts of autism, be they male or female. It’s more acceptable in society for males to be angry or get into fights, and it’s often over quickly as if it never happened. It’s less acceptable for females to be mad and have emotional outbursts or be argumentative, and it often spells doom for friendships.

Autistic females have demonstrated greater capacity for empathy than autistic males in role-playing tasks. They often describe feeling exquisitely sensitive to the emotions of others, the opposite of the stereotype of emotionally detached autistics. They can also be profoundly pained by rejection, to a greater degree than others. Autistic females are often so afraid of someone being upset with them, disappointed in them, or of hurting others’ feelings, that they become people-pleasers, trying to figure out what other people want from them so they will be liked. Unfortunately, this often later leads to autistic females being taken advantage of or being abused in relationships more frequently than neurotypical females.

Females still carry much of the organizational burden in families, including child-rearing responsibilities and housework, even if they work outside of the home. These tasks require time management, multitasking, and efficiency, all parts of executive functioning that are challenging for autistic people but are not part of the official diagnostic criteria. The older they get, the more organizational demands are placed on them, and the less explicit explanation for how to do things is provided (because we should “get it” by adulthood), leading autistic females to often feel they are failing at life.

Diagnostic evaluations happen if someone recognizes signs of trouble functioning and refers them to a clinician. If there are no classic signs, referrals happen less often or not at all. Currently, screening tools and behavioral evaluations use tests and checklists that ask about and measure stereotypically male signs of autism. If parents, teachers, and doctors do not understand the female presentation of autism, and if the checklists ask mostly about male behaviors and traits, the signs of autism in females go unnoticed.

One of the most frustrating parts of diagnosing an underrecognized population, like autistic females, is not being believed by other clinicians, therapists, educators or caregivers. Once someone is diagnosed, they may be referred for psychiatric medication for a comorbid, or co-occurring, disorder, or for academic accommodations or therapies. It is common for other providers to disagree with these diagnoses because “they don’t seem autistic,” in their offices or classrooms. Because females often mask and defy stereotypically autistic presentations, individuals and families must endlessly educate others and advocate for themselves or their children to receive the treatments, supports, and accommodations they deserve