Medical care of autistic adults is marked with bias, advocates say. (Photo by Alex Proimos/Creative Commons)
Doctors often show bias toward autistic adults, showing skepticism about their autistic identity, using ableist language or failing to recognize autistic people may react differently to sensory stimuli like pain, activists say. This leads to distinct challenges for autistic adults – and the need for patients to advocate for themselves and activists to drive systemic changes.
Tatum Spears, 31, remembers a psychiatrist who refused to acknowledge the possibility that she was autistic.
“He proceeded to call me a narcissist. And I was like ‘OK, this man is not interested in hearing me at all,’” Spears said.
Autistic adults may also, as autistic life coach Heather Cook points out, experience or show pain differently from non-autistic adults. This may make it difficult for doctors to accurately perceive an autistic person’s pain or state of mind.
“My outward signs of what my inward feelings are are often mismatched,” said Cook, 41. “I might actually be in a great deal of pain, but look still very calm and collected … doctors will often not believe me.”
Tatum Spears said one psychiatrist refused to acknowledge the possibility that she was autistic. Doctors and other medical providers need to “above all else, believe us,” Spears said. (Photo courtesy of Tatum Spears)
Zoe Gross, 32, director of advocacy at the Autistic Self Advocacy Network in Washington, D.C., said doctors sometimes assume all people feel pain in the same way.
“I feel like doctors often run on autopilot and it normally works for them because many people have (a) similar understanding,” Gross said. “If you take 10 people with heartburn, maybe all of them will have similar symptoms, but then if you throw in an 11th autistic person who has heartburn, it’s going to be totally different for them.”
The lack of knowledge or respect can lead to lesser quality of care. A study published in Molecular Autism in May 2022 said autistic adults reported poorer quality health care than non-autistic adults. Another 2022 study, published in Spectrum, surveyed autistic and non-autistic people primarily living in the United Kingdom or Ireland. Only 1 out of 3 autistic respondents said they had “a good relationship with their general practitioner,” the study says.
Medical care in the U.S. is rife with misunderstandings, advocates said.
Autistic people may be troubled by sensory stimuli, such as the glare of fluorescent lights or odors from cleaning products and medications.
“It’s a fight to just stay focused,” Cook said. “Now I’ve started asking, ‘Can we turn the lights down or off?’ And most of the time, they will actually do that. But I never knew until recently that I could try that.”
Different facets of an autistic person’s identity also may affect their ability to advocate successfully. Women may be disbelieved or thought to be exaggerating their pain – Cook recalled only being tested for ovarian cysts after she “collapsed in the doctor’s parking garage.” Only then did she find out that she had cysts. One of them had burst.
Autistic life coach Heather Cook says autistic adults may show pain differently from non-autistic adults, making it difficult for doctors to accurately perceive an autistic person’s state of mind. (Photo courtesy of Heather Cook)
For queer and gender-diverse autistic people, their gender or sexuality may have a larger impact than their autism on their medical treatment.
“It would literally be unsafe to disclose that I’m a lesbian,” said Anita Cameron, 57, a longtime disability activist and director of minority outreach at Not Dead Yet, a disability rights group.
“You literally get treated different…. It’s a little safer to be autistic than to be a lesbian, to be queer these days,” said Cameron, who lives in Rochester, New York. “Autistic people are six times more likely to be trans and non-binary.”
Cameron, who is Black, added that Black autistic people may be perceived as threats, due to others misinterpreting their behavior as dangerous. She notes the deaths of Black people with developmental disorders in encounters with police, making her careful of how she presents herself to health workers, even while living with chronic pain.
“If I go up in that emergency room crying and screaming … at the very least, I’ll get mocked,” Cameron said. “At the very worst, I will be escorted out of the emergency room or even arrested.”
Activists and experts said one problem is that much of the research and public attention on autism centers on children, rather than adults.
The Centers for Disease Control and Prevention estimated the population of autistic adults at 5.4 million in a 2020 study – 2.2% of the adult U.S. population.
“More people are starting to be aware that autism doesn’t magically go away when you turn 18,” Gross said.
“But there’s still this idea that autistic adults are childlike in some way,” Gross said.
Anita Cameron is a longtime disability activist and director of minority outreach at Not Dead Yet, a disability rights group. (Photo courtesy of Anita Cameron)
Doctors may fail to treat autistic adults as equals, using ableist language or infantilizing them, advocates said. This can go as far as denying them treatment or procedures commonly offered to others. For example, medical providers may not ask questions about autistic patients’ sexual health and relationships.
The treatment gap means autistic people have to advocate for their health needs – being insistent about their need for accommodations, scripting and practicing what they’ll say in medical offices and, when necessary, making formal complaints.
“Nothing will ever change if you just allow things to happen to you and (do) not speak out on it,” said Cameron, who, in March 1990, helped organize and participate in the Capitol Crawl, an act of civil disobedience that helped to spur the passage of the Americans with Disabilities Act four months later.
During the Crawl, according to ShareAmerica.gov, more than 60 disabled people left behind mobility aids and crawled up 83 steps to the Capitol building. Cameron describes participating in the event as having been “crawling in history.”
Decades later, systems still need to change, advocates said. Medical professionals need to listen to recommendations from disability advocates, step out of “autopilot” to explore the needs of autistic patients and be willing to make accommodations. It starts at the core of the doctor-patient relationship.
“Believe us, believe us,” Spears said. “Above all else, believe us.”
