Getting autism right

To a group of autistic adults participating in a Rutgers study, giddiness manifests like "bees"; small moments of joy are like "a nice coffee in the morning" that yields "a sense of elevation"; anger starts with a "body-tensing" boil, then headaches.

Contrary to common perceptions and years of research that autistic people can't describe their emotions or often have muted emotional responses, a Rutgers study published in the American Journal of Occupational Therapy concludes that many autistic adults are in fact acutely aware of their feelings and can label them in vivid, often colorful detail.

"What if everything we know about autism is wrong?" said Aaron Dallman, an assistant professor of occupational therapy at the Rutgers School of Health Professions and the author of the study.

"We spend all this time problematizing autism, rather than doing the work to understand what it's like to be autistic," he said. "The popular idea that autistic people don't have rich, emotional lives is simply not true."

To catalog how young autistic adults describe their emotions and navigate their interactions with others as well as identify potential strategies to bridge the emotional chasm between autistic and nonautistic people, Dallman conducted a series of focus groups designed to understand individual experiences.

Twenty-four autistic adults ages 18 to 35 participated in one of six video conference focus group interviews. Discussions were facilitated by Dallman and included questions related to how emotions are manifested physically, what participants feel during therapy sessions and how participants communicate about their emotions with others.

Transcripts from the sessions were created and anonymized by a graduate research assistant. Data was then coded and analyzed using a qualitative research methodology that explores how individuals make sense of their experiences.

Participants overwhelmingly reported that typical emotion words such as "happy" or "sad" don't adequately characterize their complex emotional experiences. Instead, descriptions of emotions included rich, dynamic language and often combined traditional emotional words with references to physical sensations, particularly in the stomach.

Participants also reported that "affective contact" -- exchanges of feelings between individuals -- with nonautistic people can be difficult and is particularly challenging when nonautistic people misinterpret the emotional expressions of an autistic person.

"I've had people say, like, 'Wow, you look really happy right now,' when I'm just kind of chilling out," one participant said. "I'm not sure what about me looks extremely happy."

Since the first descriptions of autism, difficulties with human interaction have been considered a common feature of autism spectrum disorder. Dallman said confusion arises when therapists or nonautistic people try to supplant neurotypical definitions of emotions -- a smile must mean "happy," a frown "sad" -- when these labels don't apply to autistic people.

Eye contact is a perfect example, Dallman said. For nonautistic people, locking eyes suggests social interest but is often experienced as unpleasant by autistic people. Similarly, autistic people often use stimming techniques -- repetitive actions, such as hand flapping or rocking, to regulate emotions -- that can be viewed negatively by nonautistic individuals.

Dallman said his findings could point the way to new autism therapy strategies. Instead of urging changes to how autistic people communicate, he said, anyone who has an autistic person in their life should work instead to improve mutual understanding between those who have diverse modes of experiencing the world.

"We don't have to change everyone, but let's think about changing the classroom, or caregivers' attitudes, so they understand what messages an autistic individual is communicating and how they express their emotions," Dallman said. "It's time for our communities to embrace the unique perspectives and contributions of autistic community members."