Ending the stigma of autism in communities of color

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When Camille Proctor’s son was diagnosed with Autism Spectrum Disorder (ASD) in 2008, finding culturally competent resources was far from easy. As a Black mother in metro Detroit, navigating a new world of therapies and services often left her feeling isolated.

“I would go to support groups, but no one looked like me,” Proctor says. “No one understood some of the complex things that happen in communities of color in regards to interactions with the police and just how we access services, as well as the disparity of information.”

In response, Proctor decided to take matters into her own hands and founded the Color of Autism Foundation in 2009.

The nonprofit aims to end the stigma surrounding ASD in communities of color by providing accessible resources tailored to specific cultural needs, such as addressing language barriers, unique caregiving practices, and systemic challenges faced by these communities. With a belief that “information is power,” the foundation offers free quarterly virtual training sessions that help families understand therapies like speech and language, Applied Behavior Analysis, and crisis intervention.

“We go through all of those things with them so that they can better understand what the purpose of those therapies are,” Proctor says. “If you put your child in speech therapy on Monday, and Saturday they’re not spitting 16 bars, that's not going to happen because it takes time, so we bring people in to explain all those things to them.”

The national foundation also creates safe spaces for parents across the country to share advice and connect. For example, one mother struggling with her son’s sensory aversion to haircuts found a solution through another parent’s suggestion: using an electric toothbrush to desensitize him to the sound of clippers.

“We want them to be able to take their cameras off, and have conversations, and they do that,” Proctor says. “We don't tell them they have to, but after they're there, they come back the next week and the camera is on, and we get to see them, and they get to talk, and they feel like they're connected to someone, and they're not being judged.”

As someone who is “allegedly, a middle-class person,” Proctor draws on her own experiences to illuminate the challenges families face.

“Even I had trouble accessing services,” she says. “In Detroit, to my knowledge, right now, there's only one clinic in Detroit proper. The rest are in the suburbs. Detroit is supposed to be the Motor City… but underserved people typically have problems with transportation and can't get to places.”

She adds, “How do you go through wait lists and how do you have these conversations with therapists about how you want your child to learn? It's very multifaceted.”

When a therapist doesn’t look like the person or family they’re delivering services to, sometimes discussions are awkward or ineffective, Proctor says. Plus, she adds that many “evidence-based practices” are largely based on studies of white children, so Black children are underrepresented, and their unique needs aren’t always considered.

“I think that we're all different,” Proctor says. “And I think that our differences should be celebrated.”

Despite these challenges, the Color of Autism Foundation has made significant impact, partnering with childcare providers and local organizations to create more inclusive environments for neurodivergent children. Through newsletters and social media, the nonprofit sends out resources and recruits new people to their programs to make sure that everyone has the information needed to make their community thrive.

Proctor’s ultimate vision is to create an inclusive community and have the world celebrate differences, rather than the opposite.