Even though two of Maria Davis-Pierre’s children have autism spectrum disorder, it never occurred to her that she might be on the spectrum, too. Now 38 and a licensed mental health therapist, Davis-Pierre had long blamed her symptoms on ADHD, with which she was diagnosed in college. It wasn’t until her psychiatrist mentioned it that the possibility even crossed her mind.
“My ADHD had been getting worse and when I talked to my psychiatrist about my symptoms he asked if I’d ever been tested for autism,” Davis-Pierre says.
Looking back, it all makes sense. But for Davis-Pierre, who had become accustomed to masking her symptoms, it was still a shock. She didn’t realize her anxiety, problems with social interactions, and stimming (behaviors like biting nails and twirling hair), could all be characteristics of the diagnosis. She also has a high IQ, like many high-functioning adults with autism spectrum disorder.
“I never thought, ‘Autism.’ I just thought these traits were part of my personality, ”says Davis-Pierre, who is now a licensed mental health counselor (LMHC) in West Palm Beach, FL.
She was also feeling exhaustion, depression, and fatigue that are common in adults on the autism spectrum. They often spend so much time hiding symptoms and trying to figure out social cues that being around other people who are not on the spectrum is exhausting. It’s called “autistic burnout” and it’s one of the main symptoms that San Diego therapist Joel Schwartz, PsyD, sees in his practice.
Schwartz, who specializes in working with adults who are on the autism spectrum, says many of his clients have spent their lives trying to “camouflage” their symptoms. And over time, suppressing who you are can be exhausting.
“Patients find themselves burning out in middle adulthood or even younger and wondering why they have no energy when everybody else does,” Schwartz says. “Over the years, trying to meet other people’s expectations chips away at who you are – in some cases causing depression, anxiety, and even suicide.”
Schwartz says that many people come to him because they’re tired of feeling social rejection and anxiety. Often a negative event – for example, being reprimanded at work because you missed a social cue – will prompt someone to finally seek help. Others may feel heightened emotions around sensory issues such as loud noises, smells, and bright lights.
But the good news is that more and more people are seeking a diagnosis in adulthood. And as the curtain lifts, they’re finding their own community, often online.
“The positive side of social media is that it’s created places where people can discuss their experiences,” Schwartz says. “And some are able to find resonance in the experiences of other autistic people.”
Schwartz focuses on addressing sensory needs first, which can have an overwhelming impact on the emotions of a person with autism spectrum disorder. Simple things, like noise-canceling headphones and sunglasses, can make a big difference.
Most of all, Schwartz wants his clients to know their own strengths and feel no baggage from being different. “We want to maximize people on their own terms so they end up happy, instead of filled with shame.”
Autism in Under-Represented Groups
Psychologist Lauren Megrew, PhD, of Scottsdale, AZ, says she feels liberated since she got her autism diagnosis 5 years ago. She’s devoted her career to helping others going through the same experience.
In her work, Megrew focuses especially on women, whom she says often go undiagnosed. Like Davis-Pierre, she has a daughter who is also on the autism spectrum. When her daughter was diagnosed, Megrew noticed she had many of the same symptoms. “I had always just thought I was quirky and dramatic,” she says.
Megrew says that women have more trouble getting diagnosed because they tend to be better than men at masking their symptoms. Megrew says that she was able to get her diagnosis because she already had an established relationship with her therapist so they were able to work through the process together.
Diagnosing Autism Spectrum Disorder in Adults
As the word “spectrum” implies, autism spectrum disorder is not one-size-fits-all. It can look very different in different people.
Autism spectrum disorder ranges widely in its symptoms, skills, and their impact on a person’s life. In some people, the symptoms are severe, so it’s very unlikely to go undiagnosed until adulthood. But in those with less noticeable symptoms who handle tasks of daily life themselves, it might go unrecognized.
Health care professionals use the DSM-V, from the American Psychiatric Association, to diagnose autism spectrum disorder. (“DSM” stands for the Diagnostic and Statistical Manual of Mental Disorders. “V” stands for the 5th edition.) The diagnosis is based on a person’s symptoms, signs, and testing.
Many people go through the DSM with their therapist to obtain a diagnosis.
Megrew says in general, women have to fight harder to be diagnosed. She says the problem goes beyond sex to also include race and ethnicity and stems from a lack of understanding abound autism spectrum disorder, like the myth that it mostly impacts white males.
“There’s this perspective on diagnoses that hasn’t evolved past where it started decades ago,” she says.
Davis-Pierre agrees. She says that as a Black woman she was lucky to receive her diagnosis and part of the reason her children were able to receive one as well was because her husband is a physician who was able to navigate the system.
Still, Davis-Pierre says she’s really grown from the experience. It’s helped her understand and accept herself.
Now that she knows the truth, she can reach out and help others going through the same process. She’s even founded a business called Autism in Black to provide counseling to Back parents with children on the spectrum. She also has a podcast by the same name.
As she puts it, “Getting my diagnosis just explained so much of who I am.”