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 we may be overlooking girls and gender non-conforming youth with autism. 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.”

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