News and Knowledge

It’s not news to anyone that autism affects more males than females. Except that may not be the latest news. Recent research suggests that the ratio may be three to one, rather than four or five to one. A recent study published in the Journal of Autism and Developmental Disorders and an article published on the Spectrum News website in March highlight the experience of women and girls with autism.

Understanding the Female Experience

In the study, which was done in the United Kingdom, researchers gathered a group of 18 women and girls with autism and four mothers of girls with autism to discuss what it was like to be a female with autism. Their findings centered around five broad themes:

• Fitting in with the norm: Participants reported difficulty in feeling like they fit in. Many of them also mentioned that living an “ordinary life” is exhausting, given that they must adapt their thinking styles to a neurotypical world.
• Potential obstacles for autistic women and girls: Participants cited not getting a timely diagnosis and the lack of support once a diagnosis was given as primary obstacles. One participant put the feeling of finally getting a diagnosis this way: “Yay, I’m not so crazy after all, I’m not this weird crazy person, I do fit in somewhere.” Several women mentioned that not having support made their lives harder than they feel they should have been.
• Positive aspects of having autism: Many of the women commented positively on being able to see the world from a unique perspective. Other benefits they mentioned included having long attention spans, a good memory, a deeper sense of empathy, and greater creativity. Several of the participants also noted a strong sense of justice, feeling a need to stick up for those who cannot stick up for themselves.
• Negative aspects of autism: Of the 18 women with autism who participated in the study, 16 had co-morbid conditions such as anxiety, obsessive-compulsive disorder, and depression. Eleven of the 18 reported sensory sensitivities ranging from dislike of loud noises to cross-modal effects like synesthesia. Participants also noted that they had felt different from others from an early age. Many of them commented that they preferred being on the sidelines at a social function or sitting with adults when they were young because they didn’t understand how to socially interact with their peers. Some also mentioned feeling vulnerable because of their autism, particularly when it came to sexual relationships.
• The perspective of others: In speaking to the mothers who participated, researchers gained information about the impact autism has on the wider family. The mothers talked about feelings of isolation, family breakdown, and narrowed social lives. All of the participants were passionate about the need for a greater understanding of autism, particularly autism in girls and women.

Balancing the Ratio in Research

The Spectrum news article, “Righting the Gender Imbalance in Autism Studies,” highlighted the importance of including women and girls with autism in research studies. William Mandy, a clinical psychologist at University College London, noted that research studies typically include three to six males for every female. Improving the sex and gender balance in autism studies could transform our understanding of the condition.

Researcher Lauren Kenworthy points out that not having a balance in research can lead to missed opportunities to provide effective treatment to women and girls. Clinicians often miss girls with autism who are likely to exhibit different traits than boys with autism do. Many girls go unidentified or are misdiagnosed with conditions like bipolar disorder and anxiety, the article points out.

When researchers replicated the results of a study with only one girl included that used eye tracking to show that children ages 6 to 10 with autism would rather look at objects than faces, they found that including an equal number of boys and girls gave different results. Namely, girls with autism look at faces more quickly and for longer than boys do.

Girls also often camouflage their traits in order to conform to societal expectation. The article described the experience of Morénike Giwa Onaiwu, co-executive director of the Autistic Women and Nonbinary Network and chair of the organization’s Autism & Race Committee. She said that she worked hard to fit in, hiding signs of autism like sensitivity to smells and textures, not making eye contact, and making humming noises to soothe herself. She managed, but the pressure resulted in depression and anxiety. She was diagnosed as an adult at the age of 31 after her children received diagnoses of autism.

There are signs that research is changing to accommodate not only females on the spectrum but other groups who don’t fit the traditional criteria, like nonbinary people and boys whose traits don’t match traditional criteria. 

Sharon daVanport, executive director of Autistic Women and Nonbinary Network, has been participating in a research study for more than a year. “I went into this totally expecting that I’d be part of meetings where I’d have to be sending emails after the meeting saying, ‘Hey, you spoke over me completely and shot everything I said down,’” she says. But that hasn’t happened. “I hope that this research collaboration will champion a shift in centering autistic people and looking at the whole spectrum of gender.”