Why Are So Many Autistic Girls and Women Still Missing Out on Early Identification?

Why Are So Many Autistic Girls and Women Still Missing Out on Early Identification?

Thursday, March 30, 2023
Early Identification: Girls and Women with Autism

For the first time, recent data from the Centers for Disease Control and Prevention (CDC) show autism in girls at a prevalence rate higher than 1%. While the CDC says autism is around 4 times as common in boys as in girls, many researchers think the diagnostic gap between the sexes is wider than it should be. The gap suggests that many girls and women don’t get the support they need to navigate the world. 

A 2021 research review identified several factors that present challenges in evaluating girls and women for autism (Estrin et al., 2021). As you review the findings, it’s important to note that 

  • findings sometimes conflicted across studies; 
  • the samples in many of the studies involved a greater number of boys than girls; and 
  • more research needs to be done to clarify understanding. 

Here’s what research tells us about the barriers to timely, accurate diagnosis. 

 

WPS recognizes that autism, sex, and gender intersect in complex ways. In this article, we use the terms “boys” and “girls” to reflect the language used by researchers cited in the article, though we acknowledge that sex and gender are not necessarily binary.

 

Gendered symptoms make it harder to identify autism in girls.

Researchers point out that, for autism to be identified, girls often need to experience more pronounced autistic traits, another disorder or health condition, or greater difficulties with language.    

 

Behavior Difficulties  

In studies, girls who had been diagnosed with autism often also had conditions like these: 

  • staring or seizure-like symptoms 
  • hyperactivity 
  • low IQ or intellectual disability 
  • toileting or temper difficulties 
  • eating difficulties  

Researchers said an autism diagnosis was more likely in cases where girls had a co-occurring behavioral condition.  

 

Social Communication Patterns 

Social communication has many facets. In autistic and in neurotypical people, trouble with one area doesn’t necessarily mean trouble in others. Generally, this skill set includes a person’s ability to  

  • explain what an emotion feels like physically and mentally; 
  • talk about times when they feel a certain emotion; 
  • identify when someone is feeling a particular emotion, even if it doesn’t show in facial expressions; and 
  • predict the impact someone’s emotions might have on other people or on their actions. 

Every autistic girl has a unique array of abilities. Some autistic girls may seem to have ample emotional and social skills. When researchers observed playground social settings, for example, they noted that autistic girls socialized in groups—while autistic boys played alone or were engaged in “structured activities.” On closer study, however, researchers noticed that autistic girls were often “fringe members of female social groups.” The social situations may have given girls a chance to study interactions for the purpose of camouflaging (Mattern et al., 2023).  

When Mattern et al. compared autistic boys to autistic girls, they noted that girls scored significantly higher on two specific social skills: social cognition and understanding social causality. Social cognition refers to a set of abilities that allow us to detect, interpret, mirror, and respond to emotional signals from people around us. In this study, social causality referred to the ability to describe emotional reactions to past events and explain how behaviors affected other people.  

In studies that analyzed brain images in a resting state, researchers found some differences in brain networks between autistic and neurotypical girls. The brain networks that were reliably different were those related to emotion regulation and anxiety.

When imaging studies showed differences between autistic and neurotypical boys, on the other hand, the differences were related to person perception and social perception. Those traits look more like the diagnostic criteria for autism. Researchers suggested that since the brain networks underlying symptoms may differ between sexes, interventions for girls might be more beneficial if they focused on emotion regulation and anxiety (Pelphrey et al., 2017).

 

Language Development 

Overall, studies show that autistic girls without intellectual disability often have better-developed vocabulary and core language skills than autistic boys of similar age. Since delayed language development can prompt parents to seek an autism evaluation, some researchers worry that more advanced language skills could delay diagnosis (Ratto et al., 2018). 

Girls diagnosed with autism at an early age tend to have lower scores on measures of cognitive language ability, studies show. When autistic girls have higher language skills, they are often diagnosed with autism at a later age (Estrin et al., 2021). 

Researchers say these findings seem to support the idea that girls are more likely to receive an autism diagnosis if there is a co-occurring problem. 

 

Circumscribed Interests and Repetitive Behaviors 

These traits are important for meeting the threshold for an autism diagnosis. Yet the patterns of interests and repetitive behaviors sometimes differs across sexes. Several studies have concluded that autistic girls have fewer circumscribed interests and repetitive behaviors than autistic boys typically do.  

Some researchers have suggested that difference may be owing to different phenotypes in boys and girls. Others say that girls’ interests may not be as apparent because they may look more like the interests of typically developing girls, such as animals, celebrities, or popular bands (Tillmann et al., 2018). The difference may not be what interests an autistic girl, but the intensity of that interest.

Parents may be more concerned about repetitive behaviors in boys than they are in girls (Estrin et al., 2021). When that is the case, autism diagnoses may be delayed. 

 

Camouflage and other factors also expand the gap.

Compensatory behaviors, bias, and the lack of information about autism in girls and women may also be widening the diagnostic gap between sexes.

 

Compensatory Behaviors   

People of all backgrounds adapt their behavior to different social situations. For autistic people, the practice of hiding autistic traits and mirroring neurotypical behaviors takes enormous energy. And when compensatory strategies are skillful, they may interfere with an accurate diagnosis. They can also make it appear that girls are less impaired or need less support.  

There’s some evidence that autistic girls may be more inclined than autistic boys to use compensatory behaviors. For example, girls in one study used gestures energetically during an autism assessment. Using fewer gestures, especially gestures to signal joint attention, is considered an autistic trait, and some autism assessments measure gesture use. For that reason, the study’s authors worried that the girls’ emphatic use of gestures might lead to a lower score and less chance of a diagnosis (Estrin et al., 2021). 

There’s also evidence that camouflaging works well in childhood, but not as well in teen years. When social communication becomes more nuanced in the teen years, compensatory strategies might not keep up with new demands. One autistic adult, looking back on her transition to secondary school, said, “Suddenly, they all just seemed weird…just a whole different set of…principles, standards or morals” (Kanfiszer et al., 2017).   

One parent observed, “We noticed the divergence between friendship at primary…to secondary…it was like her typically developing peers blossomed…. And girls’ behavior becomes very nuanced, doesn’t it? It can be just a look…and she can’t read that” (Halsall et al., 2021).   

 

A Boy’s Disorder     

People’s perceptions influence referrals, evaluations, and diagnoses. Some parents, educators, and practitioners still consider autism a male condition. This perception may be based on research that proposed a “female protective effect”—the idea that simply being female lessens the risk of developing autism. Some studies do suggest that it may take a greater number of risk factors for a girl to develop autism, but the evidence is mixed and doesn’t fully explain the diagnostic gap (Doughtery et al., 2022).

If parents think of autism as “a boy’s disorder,” they may be less likely to pick up on autistic traits. In a 2017 study, one parent said, “I didn’t listen to her. She would just say how she hated school and how she hated visiting my parents and how loud everything is.…I forced her to do all those things. I arranged play dates for her and forced her to go and of course it just made things worse. It was a total failure” (Navot et al., 2017).

When parents do seek evaluations, clinicians may take a “wait and see” approach that can delay identification for years. One parent reported, “I kept asking to have her evaluated, but with her being a girl, it was even less likely that the pediatrician would refer us. I remember her saying that this is usually a boys’ thing, and she is only a little different” (Navot et al., 2017). 

 

Competing Diagnoses     

Autistic girls and women often have other health conditions that can complicate the identification process. Studies show that the chances of having a co-occurring condition are higher for girls—and that co-occurring conditions affect the age at which autism will be identified. Researchers think having a co-occurring condition improves the odds that a girl will receive an autism diagnosis (Rødgaard et al., 2021).  

Some of the more common co-occurring conditions are  

  • ADHD 
  • mood disorders such as depression 
  • anxiety disorders 
  • conduct disorder 
  • eating disorders 
  • sleep disorders 
  • intellectual disability 
  • obsessive-compulsive disorder 

It’s often the case that the co-occurring condition is diagnosed first, followed by a later autism identification. 

Learn more: Lived Experiences—Autistic Girls & Women

Key Messages   

Autism in girls and women is often overlooked or misdiagnosed. That may be because another condition is easier to recognize, or because autistic traits can look different in girls and women. Compensatory behaviors, bias, and misinformation can also shape the diagnostic process.  

It’s important to be aware of these barriers because early identification and support are critical for the long-term health and well-being of autistic girls and women. Everything we know about intervention indicates that outcomes are better for everyone the earlier they begin.  

If you’d like to learn more about assessments and interventions for autism, WPS Assessment Consultants are available to support you.  

  

Further Reading on Autism    

 

Videos and Webinars on Autism   

 

 

 

Research and Resources:  

Centers for Disease Control and Prevention. (2023). Early identification of autism spectrum disorder among children aged 4 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020. https://www.cdc.gov/mmwr/volumes/72/ss/ss7201a1.htm?s_cid=ss7201a1_w 

Dougherty, J. D., Marrus, N., Maloney, S. E., Yip, B., Sandin, S., Turner, T. N., Selmanovic, D., Kroll, K. L., Gutmann, D. H., Constantino, J. N., & Weiss, L. A. (2022). Can the "female protective effect" liability threshold model explain sex differences in autism spectrum disorder? Neuron, 110(20), 3243–3262. https://doi.org/10.1016/j.neuron.2022.06.020. 

Halsall, J., Clarke, C., & Crane, L. (2021). "Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers, and their educators. Autism, 25(7), 2074–2086. https://doi.org/10.1177/13623613211012819

Kanfiszer, L., Davies, F., & Collins, S. (2017). ”I was just so different”: The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships. National Autistic Society, 21(6). https://doi.org/10.1177/13623613166879

Lockwood Estrin, G., Milner, V., Spain, D., Happé, F., & Colvert, E. (2021). Barriers to autism spectrum disorder diagnosis for young women and girls: A systematic review. Review Journal of Autism and Developmental Disorders, 8(4), 454–470. https://doi.org/10.1007/s40489-020-00225-8

Mattern, H., Cola, M., Tena, K. G., Knox, A., Russell, A., Pelella, M. R., Hauptmann, A., Covello, M., Parish-Morris, J., & McCleery, J. P. (2023). Sex differences in social and emotional insight in youth with and without autism. Molecular Autism, 14(1), 10. https://doi.org/10.1186/s13229-023-00541-w

Navot, N., Jorgenson, A. G., & Webb, S. J. (2017). Maternal experience raising girls with autism spectrum disorder: A qualitative study. Child: Care, Health, and Development, 43(4), 536–545. https://doi.org/10.1111/cch.12470 

Pelphrey, K., et al. (2017). Autism in girls and women: A panel discussion. https://videocast.nih.gov/watch=26146

Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What about the girls? Sex-based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48(5), 1698–1711. https://doi.org/10.1007/s10803-017-3413-9

Rødgaard, E. M., Jensen, K., Miskowiak, K. W., & Mottron, L. (2021). Autism comorbidities show elevated female-to-male odds ratios and are associated with the age of first autism diagnosis. Acta Psychiatrica Scandinavica, 144(5), 475–486. https://doi.org/10.1111/acps.13345

Tillmann, J., Ashwood, K., Absoud, M., Bölte, S., Bonnet-Brilhault, F., Buitelaar, J. K., Calderoni, S., Calvo, R., Canal-Bedia, R., Canitano, R., De Bildt, A., Gomot, M., Hoekstra, P. J., Kaale, A., McConachie, H., Murphy, D. G., Narzisi, A., Oosterling, I., Pejovic-Milovancevic, M., Persico, A. M., … Charman, T. (2018). Evaluating sex and age differences in ADI-R and ADOS scores in a large European multi-site sample of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(7), 2490–2505. https://link.springer.com/article/10.1007/s10803-018-3510-4 

 

 

 

 

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