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Adult Diagnosis of Autism Spectrum Disorder

Even though two of Maria Davis-Pierre’s children have autism spectrum disorders, it never occurred to her that she might also be on the spectrum. Now 38 and a licensed mental health therapist, Davis-Pierre has long blamed her symptoms on ADHD, which she was diagnosed with in college. It wasn’t until his psychiatrist mentioned it that the possibility even crossed his mind.

“My ADHD was getting worse and when I told my psychiatrist about my symptoms, he asked me if I had ever been tested for autism,” Davis-Pierre says.

In hindsight, it all makes sense. But for Davis-Pierre, who had taken to masking his symptoms, it was still a shock. She didn’t realize that her anxiety, social interaction problems, and stimming (behaviors like nail biting and hair twirling) could all be diagnostic features. She also has a high IQ, like many high-functioning adults with autism spectrum disorders.

“I never thought, ‘Autism.’ I just thought those traits were part of my personality,” says Davis-Pierre, who is now a licensed mental health counselor (LMHC) in West Palm Beach, Florida.

She also felt exhaustion, depression and fatigue, which is common in autistic adults. They often spend so much time hiding their symptoms and trying to figure out social cues that being around other people who aren’t 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.

autistic burnout

Schwartz, who specializes in working with adults with autism, says many of her clients have spent their lives trying to “cover up” their symptoms. And over time, deleting who you are can be exhausting.

“Patients find themselves exhausted in middle adulthood or even younger and wondering why they don’t have energy when everyone else does,” Schwartz says. “Over the years, trying to meet other people’s expectations erodes who you are, in some cases causing depression, anxiety and even suicide.”

Schwartz says a lot of people come to see him because they’re tired of feeling social rejection and anxiety. Often a negative event – for example, being reprimanded at work for missing a social cue – will prompt someone to ask for help. Others may experience 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 rises, they find their own community, often online.

“The positive side of social media is that it creates places where people can discuss their experiences,” says Schwartz. “And some are able to find resonance in the experiences of other autistic people.”

Schwartz focuses on sensory needs first, which can have a huge impact on the emotions of someone with autism spectrum disorder. Simple things like noise canceling headphones and sunglasses can make a big difference.

Above all, Schwartz wants his clients to know their own strengths and feel no baggage of being different. “We want to maximize people on their own terms so they end up happy, instead of filled with shame.”

Autism in Underrepresented Groups

Psychologist Lauren Megrew, PhD, of Scottsdale, AZ, says she feels liberated since being diagnosed with autism 5 years ago. She has dedicated her career to helping others have the same experience.

In her work, Megrew particularly focuses on women, who 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 that she had many of the same symptoms. “I always thought I was eccentric and dramatic,” she says.

Megrew says women have a harder time getting diagnosed because they tend to mask their symptoms better than men. Megrew says she was able to get her diagnosis because she already had an established relationship with her therapist, so they were able to work together through the process.

Diagnosing Autism Spectrum Disorders in Adults

As the word “spectrum” implies, autism spectrum disorder is not unique. It can look very different to different people.

Autism spectrum disorders vary greatly in terms of symptoms, skills, and their impact on a person’s life. In some people, the symptoms are severe, so it is very unlikely that they will not be diagnosed until adulthood. But in those with less noticeable symptoms and managing daily life tasks on their own, it may go unnoticed.

Health professionals use the DSM-V, from the American Psychiatric Association, to diagnose autism spectrum disorders. (“DSM” stands for Diagnostic and Statistical Manual of Mental Disorders. “V” stands for 5th Edition.) Diagnosis is based on a person’s symptoms, signs, and tests.

Many people go through the DSM with their therapist to get a diagnosis.

Megrew says that in general, women have to fight harder to be diagnosed. She says the problem goes beyond gender to also include race and ethnicity and stems from a lack of understanding of many autism spectrum disorders, such as the myth that it primarily affects white men.

“There’s this perspective on diagnostics that hasn’t evolved beyond 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 her children were able to receive one as well because her husband is a doctor who can navigate the system.

Still, Davis-Pierre says she really grew from the experience. It helped her understand and accept herself.

Now that she knows the truth, she can reach out and help others through the same process. She even founded a company called Autism in Black to provide advice to Back parents with children on the spectrum. She also has a podcast of the same name.

As she says, “Getting my diagnosis explained so much to me about who I am.”

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