Challenges autistic individuals face accessing health care

Published: Apr. 19, 2023 at 12:07 AM EDT
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MONTPELIER, Vt. (WCAX) - Autistic individuals see the world through a different lens, which can often make tasks like going to the doctor’s office a challenge.

Stigmas surrounding autism can often lead providers to dismiss certain illnesses. It can also lead to unpleasant health care experiences for autistic individuals, which prompts them to push off important care.

“I think I’ve had a difficult time accessing health care my whole life,” said Amy Noyes, an autistic individual and patient at All Brains Belong, a Montpelier nonprofit that offers healt hcare and community connection for neurodivergent individuals. She says negative experiences with health care providers and other intimidating factors have previously kept her away from doctors’ offices.

“It was hard for me because it’s hard for me to make a telephone call,” Noyes said. “It’s hard for me to answer questions on a wellness exam about making connections. It’s hard for me to know where I’m supposed to go or what I’m supposed to say.”

Noyes said that all changed when she found All Brains Belon. The organization was founded by Dr. Melissa Houser, who says her own experiences as an autistic person really showed the need for a less clinical feeling environment.

“We offer people with all types of brains the same menu of options, so they can pick,” Houser explained. How do they want to make appointments? How do they want to communicate between and during visits? How do we support sensory processing, communication, executive function?”

Houser says people with autism have a life expectancy of 36 to 54 years of age, but autism isn’t their cause of death. The two leading causes are premature cardiovascular disease and suicide. “What we see is a pattern of neuroimmune conditions that have gone unrecognized, often for decades,” Houser said. “People don’t often present in the typical ways healthcare providers might be expecting.”

Other autistic individuals like, Sarah Knutson, say their biggest challenge when it comes to healthcare is lack of autonomy. They say they want treatment options and recommendations, instead of having a single solution repeatedly pushed their way.

“I’m probably less willing to give up a sense of something feeling right to me,” Knutson said. “You’re much better off if you figure out what’s good for a person and align with the things they care about.”

Noyes, Knutson, and Houser all say the biggest change that needs to happen in the system is the provider mindset that autism is a deficit. Until then, autistic folks won’t get the care they need.

“This is an urgent shift that needs to happen in the healthcare system,” Houser said.

All Brains Belong offers community groups for neurodivergent individuals, as well as training for health care providers.

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