Autism in Girls and Women: Why It Is Often Missed or Misdiagnosed?

The commonly cited prevalence of autism is approximately four boys for every one girl. But this statistic may tell us as much about how autism has traditionally been recognized and diagnosed as it does about autism itself. A large meta-analysis found that the male-to-female ratio among children meeting criteria for autism was closer to 3:1, and suggested that girls who meet criteria may be disproportionately less likely to receive a diagnosis (Loomes et al., 2017).

We all know the familiar picture of an autistic boy from books, movies, and popular culture: highly intelligent, perhaps genius-like, possibly a “savant” in mathematics, music, or art; struggling to make eye contact; flapping his hands when overwhelmed; perhaps becoming physically distressed when sensory input becomes unbearable.

There is nothing wrong with recognizing and supporting autistic boys and men—we, at the Spectrum Launch Institute of Agoura Hills, sure wish to offer relief and the right support. But when this becomes our only mental picture of autism, we may fail to recognize autism when it looks different.

Girls and women can be autistic, too—and their autism may be more difficult to see.

Research increasingly suggests that autistic girls and women are more likely to be underdiagnosed, diagnosed later, or misdiagnosed. An international panel of autism researchers and clinicians concluded that both biological factors and identification biases contribute to the lower rate of autism diagnosis among people assigned female at birth (Lai et al., 2023). Conventional diagnostic approaches may also be less sensitive to some female presentations.

One reason may be social behavior. Autistic girls can sometimes appear more socially engaged or socially reciprocal than autistic boys, even when significant underlying difficulties remain. Dean et al. (2017), for example, found that autistic girls used compensatory social behaviors that could make their difficulties less visible to observers. The authors concluded that relying on obvious social isolation as a marker of autism may contribute to girls being overlooked.

In other words, a girl may look socially connected while internal experience is characterized by confusion, loneliness, or exhaustion.

The same phenomenon can continue into adulthood. Research on autistic women has documented consciously or unconsciously masking, compensating for, or adapting autistic characteristics to manage social expectations. A systematic review found substantial evidence for masking or camouflaging among autistic females and noted its potentially negative consequences (Tubío-Fungueiriño et al., 2021). Other research has associated camouflaging with depression, anxiety, stress, and suicidal thoughts (Beck et al., 2020).

There is a heartbreaking consequence to being misunderstood for too long. Kõlves and colleagues (2021), studying a nationwide Danish population, found that autistic individuals had substantially higher rates of suicide attempts than those without autism. Among autistic individuals, women had 4.41 times the rate of suicide attempts of autistic men after adjustment. More than 90% of autistic individuals in the study who attempted or died by suicide had another psychiatric condition.

This does not mean that autism itself causes suicidality or automatically leads to suicidal ideation. There is much we can do for our happiness, and no human experience is ever set in stone. But it does remind us of the possible human cost of overlooking profound difficulties simply because they do not resemble the stereotype.

The Interpersonal Theory of Suicide offers another perspective. Van Orden and colleagues (2010) propose that suicidal desire is particularly associated with the combination of thwarted belongingness and perceived burdensomeness, together with hopelessness about these conditions. For some autistic girls and women, years of struggling to belong while feeling fundamentally different may be psychologically significant.

I sometimes think of this as the difference between seeing a brightly colored male cardinal and overlooking the less conspicuous female. Nobody would suggest that the female cardinal is less of a cardinal. She simply requires a different kind of attention to be seen.

The same should be true of autism.

The Spectrum Launch Institute of Agoura Hills intends to contribute to changing this heartbreaking injustice. We need to become better at recognizing autism in girls and women—not by creating a different definition of autism, but by becoming more sophisticated in how we recognize its many manifestations.

When we learn to see what has previously been overlooked, we can provide the understanding, support, and opportunities for development that all people deserve.

Perhaps this is more than a matter of better diagnosis. It is part of a larger human project, which is the social imperative of learning to really see one another, with an open heart and a curious mind.

References

Beck, J., Lundwall, R., Gabrielsen, T.P., Cox, J., South, M., (2020) Looking good, but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809-821. https://doi.org/10.1177/1362361320912147

Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. https://doi.org/10.1177/1362361316671845

Kõlves, K., Fitzgerald, C., Nordentoft, M., Wood, S. J., & Erlangsen, A. (2021). Assessment of suicidal behaviors among individuals with autism spectrum disorder in Denmark. JAMA Network Open, 4(1), e2033565. https://doi.org/10.1001/jamanetworkopen.2020.33565

Lai, M.-C., Amestoy, A., Bishop, S., et al. (2023). Improving autism identification and support for individuals assigned female at birth: Clinical suggestions and research priorities. The Lancet Child & Adolescent Health, 7(12), 897–908. https://doi.org/10.1016/S2352-4642(23)00221-3

Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013

Tubío-Fungueiriño, M., Cruz, S., Sampaio, A., Carracedo, A., & Fernández-Prieto, M. (2021). Social camouflaging in females with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 51(7), 2190–2199. https://doi.org/10.1007/s10803-020-04695-x

Van Orden, K. A., Witte, T. K., Cukrowicz, K. C., Braithwaite, S. R., Selby, E. A., & Joiner, T. E., Jr. (2010). The interpersonal theory of suicide. Psychological Review, 117(2), 575–600. https://doi.org/10.1037/a0018697