Rosanne Bersten decided to start keeping genetic records for her guinea pigs when she was 11 years old. Bersten’s breeding program included meticulous note-taking as she introduced new rodents with different characteristics.
Looking back, Bersten says, she showed obvious signs of being on the autism spectrum as a child.
“I still have a copy somewhere of the map I made of my Lego town and the table of all the Lego people, their ages, occupations, partners, children, and the license plates of their matchbox cars,” the now-46-year-old mom recalls.
But it wasn’t until her own daughter was diagnosed at age 6 with high-functioning autism that Bersten realized she, too, needed to be evaluated, she says.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, has redefined “Asperger’s syndrome” as “autism spectrum disorder,” although many “Aspie” moms and others in the autism community still use the old term to identify.
“I was listening to the psychologist describe the reasons for her conclusions,” says Bersten, who was also identified as gifted as a child. “I said, ‘You sound like you are describing me.’”
Why Late And Missed Diagnoses Matter
It’s unclear how many mothers are diagnosed with autism spectrum disorder after ― or perhaps, because ― their own child or children have been diagnosed. Fathers are diagnosed, too. But licensed professional counselor and certified trauma counselor Bill Prasad says women largely account for the uptick in patients presenting with autism in hospital settings and at his private practice in Bellair, Texas.
Growing awareness and understanding about autism and how it can present in women and girls could be contributing to the increase, Prasad says. He cites depression as the overwhelming reason these women have reached out to him.
“The girls with missed diagnoses grow into women who have children, and they start to see themselves in that youngster,” he said. “What they start to see is that aspects of their capacity for social communication [are] impaired, which can lead to feelings of isolation and depression.”
It is when you peel back the layers, Prasad explains, that you see the symptoms of autism spectrum disorder.
“Almost everyone has heard of autism now. But a much smaller number of people understand what it actually means to be autistic,” says Carol Povey, the director of the London-based Center for Autism at the National Autistic Society.
“This diagnosis can be a critical milestone in people’s lives, providing an explanation for feeling ‘different’ after years of not understanding why they found some things difficult or thought differently from their peers,” Povey said. “It’s also a gateway to identifying ways to access essential support.”
“This diagnosis can be a critical milestone in people’s lives, providing an explanation for feeling ‘different’ after years of not understanding why.”
Support is crucial for adult women on the spectrum, as they are more likely to be misdiagnosed with another condition, or to be missed entirely. Research shows that girls can be better at masking “traditional” signs of autism, Povey says, which leads to increased stress and, sometimes, secondary conditions such as eating disorders, anxiety and depression.
Christina Gleason, 38, says her diagnosis was a relief. The resident of Clifton Park, New York, was diagnosed with high-functioning autism three years after her son, and prefers identifying as an “Aspie” over the current DSM-V terminology.
“For me, diagnosis was an explanation for why I never seemed to fit in, no matter how hard I tried,” said Gleason, who has a master’s degree in psychology.
“I’ve been trying my whole life to ‘pass as normal’ before I ever had a clue that I could be autistic. Knowing we are both Aspies has helped me understand that [my son] has specific needs. I have a lifetime of experience to draw from.”
What To Do If You Think You’re On The Spectrum
So what should you do if you find yourself personally relating to your child’s autism symptoms? Start with a psychiatrist or licensed psychologist who specializes in autism diagnosis, says Dr. Jonathan Tarbox, who is program director of the M.S. program in applied behavior analysis at the University of Southern California.
“The vast majority of medical doctors and psychologists do not have the specific training and experience to make them qualified to help, so it is important to seek out someone who is an expert,” Tarbox said, noting that very few resources currently exist for adults with high-functioning autism. Psychologists and family therapists can also be very helpful beyond the diagnosis, he said.
Gleason counts herself lucky to have found a psychiatrist who does talk therapy and prescribes medication to treat her depression, anxiety and insomnia. Going to therapy, she says, is doubly beneficial. She’s not the only one reaping the rewards: Her son also benefits.
“I’m trying to help my son accept his own awesomeness,” Gleason said, “and so I’m trying to embrace my uniqueness and claim my Asperger’s as what makes me who I am.”
This article has been updated to correct Gleason’s age.