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Being diagnosed with autism later in life makes it hard to find resources, KU researcher says

A man sitting at a microphone gestures with his hands while speaking.
Claudia Brancart
Dr. Matt Mosconi, director of the Kansas Center for Autism Research and Training, discusses the barriers to receiving care as an autistic adult.

More adults are being diagnosed with autism after being misdiagnosed or simply not evaluated as kids. Even then, it's not always easy to find health providers who can offer proper support. For these two women, though, the diagnosis was actually "freeing."

Through decades of research, the definition of autism has changed. And with an increase in awareness, resources and education around the neurodevelopmental disability has increased.

Now adults, some middle-aged and older, are self-identifying or being diagnosed with autism (sometimes referred to as autism spectrum disorder, or ASD) after being misdiagnosed or simply not evaluated as a child.

Dr. Matt Mosconi, director of the University of Kansas Center for Autism Research and Training, said being diagnosed as an adult is a "major challenge."

"There are limited resources for adults seeking a diagnosis, but also autistic individuals who are transitioning into adulthood, maintaining the supports that they've had, either through the educational system, or even the different doctors that they've been working with," Mosconi told KCUR's Up To Date.

The Centers for Disease Control and Prevention estimates more than 5.4 million adults in the U.S. are autistic.

Mosconi said there are few providers with the expertise, experience and ability to provide the complex support sometimes required for autistic adults.

Lauren Ober, host of the podcast "The Loudest Girl in the World," was diagnosed in her 40s after recognizing her struggle to adapt when the COVID pandemic disrupted life.

"I am a middle aged woman with a job and a house and a car and I take care of a dog, and so I didn't really fit the stereotype," Ober said. "But I think when when a lot of the noise gets stripped away, such as it did in the pandemic, you were able to think about, or at least I was, what might be giving me more challenges than I think I should have at this point in my life."

Dr. Katie Rose Guest Pryal took a different path to being diagnosed, also in her 40s.

"What led me to my autism diagnosis was my children," said Pryal, a bipolar-autistic law professor, author and speaker on neurodivergence.

"We've known for years that autism is highly heritable," Mosconi said. "That is, there are multiple factors that can contribute to an individual having autism, but the most common is that there are multiple genes that are inherited."

Pryal, who has children on the spectrum, said she spent years masking autistic traits until she was also diagnosed.

The diagnosis, well into adulthood, helped Pryal better understand her children and herself. She said it came as a relief, and helped her stop worrying about socially awkward conversation.

"I stopped beating myself for saying these things," Pryal said. "I don't care anymore, and it's so freeing and wonderful."

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When I host Up To Date each morning at 9, my aim is to engage the community in conversations about the Kansas City area’s challenges, hopes and opportunities. I try to ask the questions that listeners want answered about the day’s most pressing issues and provide a place for residents to engage directly with newsmakers. Reach me at steve@kcur.org or on Twitter @stevekraske.
As a producer for Up To Date, my goal is to inform our audience by curating interesting and important conversations with reliable sources and individuals directly affected by a topic or issue. I strive for our program to be a place that hosts impactful conversations, providing our audience with greater knowledge, intrigue, compassion and entertainment. Contact me at elizabeth@kcur.org or on Twitter at @er_bentley_ruiz.
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