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Autism

Why Autism Has Been Underdiagnosed in Girls and Women

Better-informed perspectives are changing the field.

Key points

  • The criteria for diagnosing autism originated based on the presentation of boys.
  • Females often mask and defy stereotypically autistic presentations.
  • Clinicians must listen to patients so they do not miss the opportunity to support autistic females.

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. So, how can we improve the situation? How can we see and hear them better?

Diagnostic criteria

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. Their interests are more likely to be characters or animals than objects. For example, they may obsess about the movie Frozen or all of the Disney princesses, but to a repetitive degree that is more intense than neurotypical girls. They may watch the movies hundreds of times, repeat the movie scenes in their play exactly, and collect everything to do with that movie or character. They may believe these characters are real.

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. They may want friends but not know how to get them. Often, they observe and imitate, or “mask” to try to fit in. 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.

Underlying most tasks is the need to communicate clearly in social interactions. Autistic people are often literal thinkers, understanding the explicit meaning of words. They expect people to mean what they say and say what they mean. Typical communication is more complex than that, filled with implicit, or implied meanings, body language, facial expressions, and tone of voice. The understanding of implicit communication is hard for many autistic people. Figuring out the rules of how to act can be very difficult and it can be easy to make mistakes. If you ever read Amelia Bedelia books as a child, you know what she did when she was told to “draw the drapes.” She drew a picture of the drapes. 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 . The same concept has been described in people with ADHD experiencing rejection sensitivity. 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.

Clinician training

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. Neuropsychological testing, including intellectual, cognitive and academic testing, is often also part of an autism evaluation. This can be helpful to drive treatment and intervention but is not always necessary if learning disorders or intellectual development disorders are not suspected and can result in false negatives or missed diagnoses in individuals of average or higher intelligence. Clinicians need to use clinical judgment in cases that do not present classically, rather than rely only on test scores and checklists. Evaluations should take place over several sessions, rather than on one occasion, for a clinician to really be able to understand an individual’s behavior beyond superficial, initial impressions, as females frequently mask. Autistic females can camouflage themselves and their successful coping skills can become a liability when seeking a diagnosis.

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. We need to do better with training clinicians and educators across disciplines and to communicate with each other to support this population.

We need to humble ourselves and listen

Social media’s influence on the public’s awareness of autism in females is an emerging phenomenon. At least once a week, a client, friend, or family member sends me an autism YouTube or TikTok video. Teenagers and adults are referring themselves for evaluation because of what they’ve read or seen on Reddit or Twitter feeds. In my experience, they are often correct. Autistic people can be more socially isolated, and the internet has provided a forum for people to share in a more anonymous, comfortable way. They are recognizing themselves in others’ descriptions of their autistic traits, rather than in the behaviors described in the diagnostic criteria.

We experts need to listen to our patients more. We still have much to learn. It is urgent we do not miss the opportunity to support autistic females so they can lead happy, healthy, self-confident, and fulfilling lives. We will miss their valuable contributions to society, to our relationships, and to our families if they are not seen, heard, understood, accepted, and embraced by society. We can do better.

Facebook image: DarKinG/Shutterstock

References

Antezana L, Factor RS, Condy EE, Strege MV, Scarpa A, Richey JA. Gender differences in restricted and repetitive behaviors and interests in youth with autism. Autism Res. 2019 Feb;12(2):274-283. doi: 10.1002/aur.2049. Epub 2018 Dec 17. PMID: 30561911.

Beggiato A, Peyre H, Maruani A, Scheid I, Rastam M, Amsellem F, Gillberg CI, Leboyer M, Bourgeron T, Gillberg C, Delorme R. Gender differences in autism spectrum disorders: Divergence among specific core symptoms. Autism Res. 2017 Apr;10(4):680-689. doi: 10.1002/aur.1715. Epub 2016 Nov 3. PMID: 27809408.

Cumin J, Pelaez S, Mottron L. Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism. 2021 Sep 11:13623613211042719. doi: 10.1177/13623613211042719. Epub ahead of print. PMID: 34514874.

Green RM, Travers AM, Howe Y, McDougle CJ. Women and Autism Spectrum Disorder: Diagnosis and Implications for Treatment of Adolescents and Adults. Curr Psychiatry Rep. 2019 Mar 9;21(4):22. doi: 10.1007/s11920-019-1006-3. PMID: 30852705.

Hayes J, Ford T, McCabe R, Russell G. Autism diagnosis as a social process. Autism. 2021 Jul 9:13623613211030392. doi: 10.1177/13623613211030392. Epub ahead of print. PMID: 34243682.

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