Girls and women on the spectrum are often overlooked, diagnosed with other conditions, and/or diagnosed later in life when compared to boys and men. There are various possible explanations for that. Probably more than one of them is at play in every situation. Some of the possible reasons are:
Girls on the spectrum are often omitted from research studies and less is known about them
The tools used to make a diagnosis are primarily based on research focused on boys and might not be a good fit for diagnosing girls.
Girls on the spectrum are referred less frequently for diagnosis
Once referred, ASD may be more difficult for clinicians to recognize in girls, especially in the absence of intellectual or behavioral problems
Gender stereotypes may lead to girls being missed
Girls on the spectrum might genuinely have better adaptation and compensatory strategies than boys
Girls may receive alternative diagnoses instead of ASD, such as intellectual disability, anxiety, ADHD, depression, etc.
Autism in girls and women looks differently in boys and men, and, consequently, they often do not get captured by the standard diagnostic procedures. The specific way autism manifests in girls and women is sometimes referred to as "female phenotype." Studies show that girls are less likely to have behavioral problems than boys. They also have better language and observational skills, are more socially attuned and have more emotional issues than boys.
Girls on the spectrum might have the following qualities:
Strong language skills
Look “less autistic” because they are observing, copying and mimicking people
Can have early speech development that masks social and communication difficulties
Can have solitary but not collaborative imaginative play
Can initiate, but not maintain, friendships
Systematizing (e.g., creating a manual of) social behaviors
Can be chatty using learned behaviors, scripts, and mimicking
Naïve, vulnerable
Extreme shyness
Anxiety
Less rigid than boys
Have more social difficulties than boys
Restrictive interests are more socially acceptable
Get exhausted from regular activities
Need control and are bossy in relationships
Perfectionism
Very determined
Talk loudly
Making multiple social faux pas, being direct and blunt
Having extremely high standards for friends, for example, demanding extreme loyalty
Can have "clingy" attachments to selected persons
Poor judgment -- the inability to predict the consequences of actions and read hidden agendas can result in bad choices
Girls who have average to above-average cognitive skills use their intelligence and sharp observational skills to hide their differences. The strategy of hiding autism-related challenges is called masking, or camouflage. There is no single definition of what camouflage is. I liked how it was defined in one research study as "The difference between how people seem in social contexts and what’s happening to them on the inside."
Both women and men use camouflage, but girls and women are better at hiding their difficulties and use camouflage more than men because they might be more motivated to fit in. They can successfully avoid anyone noticing their struggles, while simultaneously avoiding interventions and supports that could provide them with adaptive and social skills that could help them function better in the world.
Because of these difficulties in identification, autism should be considered for every girl who is "young for her age,' socially awkward and has sensory differences. Diagnosticians need to be familiar with the "female phenotype" and alert to the signs of camouflaging. A diagnosis might require in-depth qualitative assessments that go beyond superficial skills and mannerisms and include investigation of reasons behind behaviors.
For example, in one research study, it was observed that at recess autistic girls weave in and out of groups of peers in the same way that the typical girls do. It turned out, however, that the autistic girls were rejected by their peers and went to the next group in hopes of being able to join in, only to be rejected again and try another group. Meanwhile, typical girls flitted successfully between different group conversations. To a less attentive observer, the autistic girls' behavior could have appeared typical.
In the same way, autistic girls can engage in other socially expected behaviors that have a different underlying reason than the same behavior in typical girls. Camouflaging behaviors look natural, but they are intentionally acted out and often rehearsed in advance.
Some examples of camouflaging include making or pretending to make eye contact, practicing wording and non-verbal language in advance for specific situations, rehearsing small talk and "ice-breakers," practicing jokes, preparing excuses for social faux pas, suppressing stimming, and intentionally assuming an interested and emotionally expressive facial expression. Camouflaging can involve intentionally performing socially desirable behaviors and reducing socially inappropriate behaviors.
A person might use camouflage to communicate a true emotional state that does not get expressed due to autism. For example, a participant in one of the studies mentioned that she normally has a flat facial expression when talking to others, even though she enjoys the conversation. As one of her camouflaging strategies, she intentionally assumes an interested facial expression to communicate her true engagement to her conversational partner.
Camouflaging (masking) does not come without a cost. Always monitoring and modifying your natural behavior and interaction style with the goal of looking "normal" is hard work.
Costs of camouflaging:
Mental, physical and emotional exhaustion and related meltdowns
Depression
Anxiety (not found in research, but reported anecdotally)
Suppressing stimming make it harder to regulate emotions, sensory input, ability to focus
Losing sight of one's own true identity
Self-perception and self-esteem are affected by "lying to others" about the true self
A feeling of having "false" relationships
Loneliness because of inability to be true self in relationships
Late diagnosis or misdiagnosis in girls because girls are generally better than boys at masking their symptoms
Successful masking of symptoms can lead even those closest to the autistic person not to believe that the person is struggling and needs accommodations and support. For example, if an autistic person nods and smiles to mask lack of understanding of what is being said, a request for additional processing time might come across as surprising.
If camouflaging is exhausting and can leave you feeling bad about yourself, why do it? There can be different motivations for using camouflage, as well as some reported benefits to using it.
Motivations to Camouflage:
To blend in, "hide in plain sight"
The desire to obtain jobs and qualifications, which are less accessible to those who are visibly "autistic"
To ensure one's own safety and well-being and to prevent bullying
To increase connections and relationships with others (sometimes only deemed necessary in the initial stages of the relationship)
To increase confidence in the ability to socialize without "getting things wrong"
Some reported benefits of camouflage:
Countering stereotypes about autism by presenting more positively than expected
Opportunities for jobs
Opportunities to have social connections and relationships
How wonderful it would be to have more inclusive communities where autistic individuals would not need to expend tremendous energy to come across as someone other than themselves in order to make a friend or have a job. I think that each one of us has a responsibility to learn how to function our best in a community and in a society where we live. Each one of us also has an additional responsibility to contribute to making our communities and our society welcoming and accessible to all its members.
Ratto AB, Kenworthy L, Yerys BE, et al. What about the girls? Sex-based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders. 2018;48(5):1698–1711.
Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Susan L. Hyman, Susan E. Levy, Scott M. Myers and Council on Children with Disabilities, section on developmental and behavioral pediatrics. Pediatrics January 2020, 145 (1).
Sarah Ormond, Charlotte Brownlow, Michelle Sarah Garnett, Agnieszka Rynkiewicz, Tony Attwood. Profiling Autism Symptomatology: An Exploration of the Q-ASC: Parental Report Scale in Capturing Sex Differences in Autism. Journal of Autism and Developmental Disorders. (2018) 48:389–403
Lai MC, Lombardo MV, Ruigrok AN, Chakrabarti B, Auyeung B, Szatmari P, Happé F, Baron-Cohen S. Quantifying and exploring camouflaging in men and women with autism. Autism. 2017 Aug;21(6):690-702.
Lai, MC, Baron-Cohen, S (2015) Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry 2(11): 1013–1027.
Lai MC, Lombardo MV, Auyeung B, Chakrabarti B, Baron-Cohen S. Sex/gender differences and autism: setting the scene for future research. Journal of American Academy of Child and Adolescent Psychiatry 2015; 54: 11–24.
Alexandra M. Petroua; Jeremy R. Parrab; & Helen McConachiec. Gender differences in parent-reported age at diagnosis of children with autism spectrum disorder. Research in Autism Spectrum Disorders, Volume 50, June 2018, Pages 32-42.
Jorieke Duvekot, Jan van der Ende, Frank C Verhulst, Geerte Slappendel, Emma van Daalen, Athanasios Maras, & Kirstin Greaves-Lord. Factors influencing the probability of a diagnosis of autism spectrum disorder in girls versus boys. Volume: 21 issue: 6, page(s): 646-658.
Laura Hull, K. V. Petrides, Carrie Allison, Paula Smith, Simon Baron-Cohen, Meng-Chuan Lai, & William Mandy. “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, August 2017, Volume 47, Issue 8, pp 2519–2534.
Linguistic camouflage in girls with autism spectrum disorder. Julia Parish-Morris, Mark Y. Liberman, Christopher Cieri, John D. Herrington, Benjamin E. Yerys, Leila Bateman, Joseph Donaher, Emily Ferguson, Juhi Pandey & Robert T. Schultz. Molecular Autism, Volume 8, Article number: 48 (2017)
Multiple presentations by Sarah Hendrickx. You can find her at http://www.asperger-training.com/sarah-hendrickx/
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