Gender Disparities in Autism Diagnosis

Watered down: a term used to describe when concepts undergo over simplification. Autism Spectrum Disorder (ASD) has been watered down. By basic association we think of ASD as flapping arms, spinning in circles, and boys memorizing train schedules. Recent findings however, show that the “puzzle piece” we have been searching for, is not the same shape in every scenario. A general assumption in academia states that the gender disparity in diagnosing autism is due to genetic differences. Now, new findings attribute the disparity towards diagnosing boys to a biased autism screening process. 

The diagnosing process for ASD follows a standard procedure. According to The Centers for Disease Control and Prevention (CDC), three methods of detection are used for early intervention including “developmental monitoring”, “developmental screening”, and “comprehensible developmental evaluations” (“Screening and Diagnosis of Autism Spectrum Disorder” 7, 8, 16). Developmental monitoring and screening both occur routinely at pediatric checkups, and determine “whether your child meets typical developmental milestones in playing, learning, speaking, behaving, and moving” (7). If developmental screening indicates there could be a possible delay, a developmental evaluation can be conducted by a professional such as a “developmental pediatrician” or “occupational therapist” (16). This professional can then determine whether a diagnosis for ASD is appropriate based on criterion of atypical “delays or differences in social interaction as well as verbal and non-verbal communication” (“The Diagnostic Process” 5). This system based process seems applicable enough, but somehow ensues in a large gender disparity in diagnosis. 

A case study conducted by the CDC in the United States tracked the proportion of ASD diagnosis across demographics as children aged eight were screened in 2016. The findings were clear, “ASD was 4.3 times as prevalent among boys as among girls” (Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years, 4). Numerous case studies have resulted in similar findings, dating back to the origins of diagnosing ASD. An article that aims to summarize and review the scientific communities’ current understanding of autism diagnosis relating to gender was written by Dr. Daniel Geschwind, of the Department of Neurology at the University of California-Los Angeles. Dr. Geschwind claims that the diagnosis of autism has been biased from the earliest studies identifying the condition, writing that males were the subjects of “8 of the 11 cases described by Kanner” and “all 4 cases described by Asperger” (5). If the famed studies by Kanner and Asperger focused mostly on male aspects of ASD from the start, how can scientists say that the current diagnosis process for ASD that was based off of such studies is not gender biased? Dr. Geschwind then introduces the idea that much of the underrepresentation of ASD in females occurs in the cases of “high functionality”, whereas in cases of “severe intellectual disability” the proportion of diagnosed males to females becomes more even (5).  Dr. Meng-Chuan Lai, scholar in the Child and Youth Mental Health Collaborative at CAMH, suspects that this underrepresentation in “high functioning” cases of ASD may be an indicator of a “lost generation” of adults who should have been diagnosed with autism as children, even when setting gender aside (1). This concept of “a lost generation” when referring to high functioning individuals with ASD is highly relevant when considering the gender disparity regarding ASD diagnosis. Since the “lost generation” refers to high functioning individuals who may have slipped by routine screening, we can begin to draw connections as to why specifically females with ASD remain undetected by routine screening. 

Unfortunately, there is not one succinct answer as to why autistic females are not properly diagnosed. There are various factors, including but not limited to: the girls themselves being high functioning, masking, incorrect interpretation of autistic behaviors, misdiagnosis, and unsuccessful parental screening. An article published by Scientific American  summarizes various case studies conducted in the past decade related to ASD in females. Szalavitz, the author, utilizes a study conducted by Dr. Francesca Happ of King’s college London. The study compared autistic traits in a large sample of boys and girls. Szalavitz, paraphrasing Happ, states the study found that if boys and girls had a similar level of such traits, the girls needed to have either more behavioral problems or significant intellectual disability, or both, to be diagnosed. This finding suggests that clinicians are missing many girls who are on the less disabling end of the autism spectrum. (7) 

High functioning girls are overlooked by standard medical practice, and there are few theories as to why. One of these theories is masking,: which refers to how autistic individuals try to minimize their autistic traits to fit in with their surroundings. Francine Russo, author specializing in psychology and behavior, wrote a deep-dive piece on masking in females. She claims that masking might “account for why girls diagnosed young tend to show severe traits, and highly intelligent girls are often diagnosed late” ( 7). If physicians in the ASD screening process are looking for the “louder” traits commonly exhibited in autistic males, they will not detect the muted traits that females express while masking. One of these “autistic traits” is difficulty socializing. Russo summarizes another study led by researcher Connie Kasari. The study observed young autistic individuals and how they socialized with peers. Russo quoting Kasari states, “The girls with autism were rejected repeatedly from the groups, but would persist or try to join another one” (14). This study concluded that while males with autism resolved to play alone, females were more motivated to continue trying to fit in. This continued motivation could be overlooked by physicians when screening for autism because the autistic girls appear to be socializing normally, even though they face continuous rejection. Another common austictic trait is having a “special interest” that one hyperactively focuses on. An article by Beth Arky of the Child Mind Institute explores how special interests could be misinterpreted in girls. Arky quotes Dr. Epstein, a clinical neuropsychologist, “So when the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls” (8). The special interests that physicians are trained to look for when screening for autism are gender biased. Physicians scrutinize obsessive male interests, while writing off any hyperactive female interests as just liking commonly girly things. Arky then quotes Dr. Nash, another researcher and adolescent psychiatrist, “I see a lot of girls who are diagnosed with ADHD when they’re young who actually meet the criteria for autism” (12). Nash explains that when girls exhibit “hyperactivity without social impairment” they are often misdiagnosed (12).  This implicit gender bias is not only limited to physicians, parents are heavily involved in the diagnosis process as well. When conducting an Autism Diagnostic Observation Schedule (ADOS screening), parents rank their own children on completion of basic everyday tasks. In her piece, Russo summarizes a study that concluded that parents are internally biased when it comes to ranking autistic traits in their daughters. It was found “that even when the girls have ADOS scores similar to those of boys, they tend to be more severely impaired” (16). This implies that parents rank their daughters as higher functioning, even when they have severe impairments, thus making it more difficult for them to receive an ASD diagnosis from a physician. 

When autism remains undiagnosed, individuals may feel that they do not understand a part of themselves. Autistic adults who reported masking often responded to a  2017 survey, “The adults interviewed described feeling utterly drained — mentally, physically and emotionally” (Russo, 26). Austistic females who do not know they are autistic may not even know that they are masking autistic traits, and therefore not understand why they are experiencing negative symptoms. Furthermore, autistic females may feel depressed, alone, or that no one understands them. If we scrutinize the system by which we diagnose autism, more females might receive a correct diagnosis at a younger age. With this correct diagnosis they would be able to understand themselves to a greater degree, receive the support they need, and gain a greater sense of community. 

Works Cited

Arky, Beth. “Why Many Autistic Girls are Overlooked.” Child Mind Institute, 2021, 

childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/.

Dean, Michelle. “The peer relationships of girls with ASD at school: comparison to boys and girls

with and without ASD.” The Association for Child and Adolescent Mental Health, 16 July 2014, acamh.onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.12242.

Geschwind, Daniel. “Sex differences in autism spectrum disorder.” US National Library of

Medicine, 15 September 2014, www.ncbi.nlm.nih.gov/pmc/articles/PMC4164392/.

“Screening and Diagnosis of Autism Spectrum Disorder.” Center for Disease Control

and Prevention, 13 March 2020, www.cdc.gov/ncbddd/autism/screening.html.

“The Diagnostic Process.” Operation Autism, 2021, operationautism.org/autism-101/

the-diagnostic-process/.

“Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and

Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016.” Center for Disease Control and Protection, 27 March 2020, www.cdc.gov/mmwr/volumes/69/ss/ss6904a1.htm?s_cid=ss6904a1_w.

Lai, Meng-Chuan. “Identifying the lost generation of adults with autism spectrum conditions.”

 National Library of Medicine, 2 November 2015, pubmed.ncbi.nlm.nih.gov/26544750/.

Russo, Francine. “The costs of camouflaging autism.” Spectrum, 21 February 2018,

www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/.

Szalavitz, Maia. “Autism–It’s Different in Girls.” Scientific American, 1 March 2016,

www.scientificamerican.com/article/autism-it-s-different-in-girls/.