Date Published: October 9, 2019
Ashleigh Warren had questions about autism spectrum disorder, a diagnosis she received in third grade. Why do relatively few girls and women have autism? Why are many people on the spectrum sensitive to sound or touch?
While in high school, she began searching for answers online. She learned about SPARK, the largest study of autism, from a video on Facebook. “I have found it to be challenging sometimes to not have complete answers to everything. With that, I became an advocate and decided to go and find answers for myself. When I saw you all [at SPARK] were doing that too, I thought, ‘hey, let’s team up,'” explains Warren, who is 18.
Warren registered for SPARK, which collects saliva samples for genetic analysis. SPARK also offers participants a chance to join other studies on various autism topics.
An Autism Diagnosis in Elementary School
Warren was 9 years old when she was diagnosed with Asperger syndrome, a milder form of autism. Asperger syndrome, along with other forms of autism, are now all called autism spectrum disorder, or ASD, in the United States.
As she got older, Warren wanted to learn more about the condition, which affects her senses of hearing and touch. She is a 12th grade student at a high school in Tennessee. She wears noise-cancelling headphones at school to help with her sensitivity to loud noises. “I hear everything at the same time, at the same volume,” she explains. Headphones help “turn down the volume.”
She is also sensitive to being tapped or brushed against in a crowd. She sometimes wears long sleeves and jeans to address that.
She has a supportive group of friends. After they got to know each other, she told them about her ASD diagnosis. “They were like, ‘OK,’ almost as though I told them I had painted my nails,” she says. “They don’t discriminate against me or treat me any differently.”
Unfortunately, she did not feel that level of acceptance when she interviewed for a job at a fast food restaurant. She explained to the interviewer that she sometimes may seem rude — although she does not intend to be — because of traits related to Asperger syndrome. “It makes it so I don’t have a filter all the time,” she explained. But her disclosure seemed to end the interview. “They didn’t ask me any further questions after that, and there was no second interview or phone call or anything.”
Preparing for Life After Graduation
Warren is preparing for life after high school graduation in 2020. She plans to get a driver’s license and, in the summer, to participate in a job skills program. She also wants to attend college to become a nurse, so she can work in a hospital intensive care unit for infants. She was inspired to become a nurse by the experience of a relative, who received life-saving care in a neonatal intensive care unit years ago.
Warren also enjoys listening to music, singing, and playing with her dog, Honey, who is part pit bull and part chow chow.
Why So Few Girls Have Autism?
She does not know any girls or women who have her form of autism. She wonders why autism mostly affects boys and men. Among children diagnosed with autism, boys outnumber girls by about 4 to 1. The ratio is even more lopsided on the milder end of the spectrum, according to research.
Are girls less likely to be diagnosed with autism because their symptoms may look different than boys’ symptoms? Warren wonders about that: “I feel like there are a lot of girls that might have autism that might be slipping through the cracks.”
Researchers also have questions about the male-female ratio and sex differences in autism. Some studies have found that girls who have autism, particularly those who do not have intellectual disability, may have less severe symptoms than boys, and may be better able to hide their social challenges at school.1-3
Scientists continue to study this issue. In fact, some researchers are using data from SPARK to examine differences in the early symptoms of autism in boys and girls, and how those differences may affect the age at which children are diagnosed.
Warren hopes others will join her in participating in research to find answers to these and other questions about autism. “It’s a group effort,” she says.
For more information on autism in females on SPARK’s website, please see:
- Girls and Women on the Spectrum: Challenges with Diagnosis and Intervention – webinar with clinical nurse specialist Kathy Koenig, associate research scientist at the Yale Child Study Center
- Are Girls with Autism Hiding in Plain Sight? – article
- Hiller R.M. et al. Autism 20, 75-84 (2016) PubMed
- Hiller R.M. et al. J. Abnorm. Child Psychol. 42, 1381-1393 (2014) PubMed
- Mandy W. et al. J. Autism Dev. Disord. 42, 1304-1313 (2012) PubMed
Photos provided by Ashleigh Warren.