Autism Spectrum Disorder (ASD) is most often diagnosed in childhood. Currently, autism is 4 times more common in boys than girls. However, research suggests that girls and gender non-conforming youth with autism may be getting overlooked. What happens when these individuals grow up? How might the symptoms, evaluation and treatment of autism look different in adulthood?
The Center for Disease Control (CDC) defines autism as “a developmental disability caused by differences in the brain.” Autism looks different in each person. The National Institute of Mental Health (NIMH) lists many signs and symptoms. Common symptoms include difficulty with eye contact, struggling with transitions or being sensitive to sensory inputs. NIMH also notes that some people on the autism spectrum may excel at math, science or other fields.
According to the Autism Society of Oregon:
- There is a research gap in studies on autism in adulthood.
- It is common to miss an ASD diagnosis until later in life.
- Less than 1% of women are currently diagnosed with autism.
The gender divide in autism research and diagnosis
“We do know that symptoms look different in girls and women,” says Cynthia Green, M.S., C.C.C.-S.L.P. associate professor of pediatrics and clinical director at OHSU Doernbecher’s Child Development and Rehabilitation Center (CDRC). “Recognition of these differences is relatively new, and this area of research continues to evolve.”
Additionally, Green says women and girls may be able to “mask” autistic features or have more subtle social challenges.
Other common experiences of women with ASD include:
- Difficulty with friends as a child or fewer, closer friendships
- Sensitivity to textures and clothing
- Social anxiety or confusion
- Eating disorders
- Higher rates of anxiety or depression
- Difficulty understanding or following social rules
- Intense special interests
- Mood disorders
Evaluating autism in adulthood
An autism evaluation in adulthood can be challenging. Typically, a full evaluation includes a developmental history. Some adults struggle to find information such as school or medical records from early years. The testing process can also be costly, and insurance often does not cover it.
However, Green says that if intense intervention is not necessary, a doctor or psychologist can diagnose autism for adults.
“Doing all the testing doesn’t necessarily make the diagnosis any more ‘official,’” she says. “Accessing care through a treating physician or mental health provider is just as valid.”
Autistic voices and other resources
Most clinics and providers focus on autism in children. Adults with a new ASD diagnosis are often not in need of intensive intervention. Instead, they may find themselves turning to community groups, podcasts, books or other resources for support.
“What I tell adults is: if there’s something about this identity that resonates with you, or there is a community or other supports that have been helpful to you, then you can use those things," says Green. "You can read those books and join those communities. Nobody is going to ask for documentation.”
Explore our resources below to learn more:
Odd Girl Out by Laura James
Thinking in Pictures by Temple Grandin
Spectrum Women: Walking to the Beat of Autism by Barb Cook, edited by Michelle Garnett
Autism in Heels: The Untold Story of a Female Life on the Spectrum by Jennifer Cook O’Toole
Spectrums: Autistic Transgender People in Their Own Words by Maxfield Sparrow (a collection of essays)
Invisible Diversity: A Story of Undiagnosed Autism
A TedX Talk by Carrie Beckwith-Fellow, who was diagnosed with autism at 35 years old (July 2017)
Autistic Pride Month: Intersectionality of Autism and Gender
A panel discussion from the Frist Center for Autism Innovation at Vanderbilt University (April 2021)
Female Life on the Spectrum
A podcast episode featuring author Jennifer Cooke O’Toole on “All Autism Talk” (September 2021)
Autistic Women and Nonbinary Network
A community by and for Autistic women, girls, and nonbinary individuals, with the tagline “Neurodiversity is for everyone.”
Autism Society of Oregon
Though primarily pediatric-focused, there is plenty of helpful information, access to support groups and other regional resources.
Spectrum – Autism Research News
An extensive library of autism research updates and opinion pieces.