This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.

When Tyrone Green's son was first diagnosed with autism spectrum disorder (ASD), he says he "absolutely" wishes he'd had access to a support group like the one he now facilitates for Black fathers of children with autism.

"When I first found out, I had a rollercoaster of emotion," Green says. "My friends had neurotypical kids, and it was one of those things where I just felt like I had a lot to say and I had to get off of my chest things that I had a hard time even saying to my wife. And so I wish I would have found this group in the earlier stages, because I would have probably been in a better mental headspace."

The group Green leads is a program of the Detroit-based Color of Autism Foundation, which seeks to end the stigma of ASD in communities of color by helping parents of children with ASD build skills to lessen their isolation. Most recently, the foundation introduced the Spectrum Family Support Partner Program, which trains parents of color to serve as advocates and mentors to other parents of color who have children with ASD. The program is supported by a two-year $77,480 grant from the Michigan Health Endowment Fund, awarded in 2023. It aims to address a lack of services for children with ASD in Wayne County, particularly in majority-Black Detroit. Camille Proctor is the executive director of the Color of Autism Foundation and parent to a son, Ari Proctor, who has ASD. She says there's "not an awful lot" of services for families with ASD in Michigan in general, so an organization like hers is necessary.
Steve KossCamille Proctor (right) with her son Ari Proctor.
"We have to create a community, not just for some, but for all," Proctor says. "... We have to make sure that we're educating and helping everyone, because that's the goal: to have better outcomes for a whole autistic community." 

Challenges for people of color with ASD

Families of color face many unique challenges in navigating an ASD diagnosis. One of the greatest hurdles is simply getting a diagnosis in the first place. Proctor says stigma or misunderstanding surrounding ASD in communities of color may prevent parents from recognizing signs of ASD in their children.

"When you look at marginalized communities, they tend to think that things like neurodevelopmental disorders are disorders that affect the white population," she says. "Because, let's face it, the marketing on these disorders hasn't been very good for minorities because they've always used white children."

Parents of color who do recognize signs of ASD in their children often have trouble getting it diagnosed. Research shows that ASD is diagnosed much later in Black, Latinx, and Asian children than in white children. Instead of getting a diagnosis, Green says Black children with ASD often "get labeled as a problem child or a kid that doesn't listen."

"It seems that the white counterparts get diagnosed right away," he says. "They're not labeled in that sense of a bad child or a problem child early, so there's discrepancies there just from the jump of getting that initial diagnosis."

Green struggled to get a diagnosis for his son in Adrian, where they live. Due to a lack of services in their immediate area, Green had to go out of his way to find a provider who could diagnose his son. Tanisha Burton, a parent advocate with the Color of Autism Foundation, has a similar story. She was unable to get her daughter diagnosed with ASD while she was living in Detroit, but succeeded when she moved to Wixom, where more services were available.

Delayed ASD diagnosis can have negative effects because children may miss out on the positive effects of earlier supportive interventions. And even after families of color clear the hurdle of getting an ASD diagnosis, they may also struggle with lack of awareness of, or access to, important supportive services for their children. Those services include crucial resources like an individualized education plan (IEP) or a 504 plan, which outline educational needs and goals for students with disabilities.

"[Parents] don't know where to go as in trainings, as in support, as in what services their kids can have," Burton says. "You can give them a diagnosis, but people don't really tell them, 'Okay, your kid can have these types of services.'"
Steve KossTanisha Burton.
With long waits for many of the services families may require, Proctor says it's important to help parents build skills to be more effective in supporting their children at home.

"I think if more parents were equipped with how to be responsive, I think there would be better outcomes for these children, because right now everything has a wait list," she says.

"Building efficacy" among parents of children with ASD

That's where the Spectrum Family Support Partner Program aims to make a positive difference for families of color. Proctor says the program has about five consistent parent advocates who have worked with over 200 families. She adds that the program is focused on "building efficacy" in parents, teaching them to become "disciplined data collectors" who are responsive to their children's needs.

"For example, if you have a child that cries every day at 12:00, what's happening at 12:00?" Proctor says. "You know, let's take note of this and what's the surroundings and what's the environment. And let's create a plan to minimize that behavior, or redirect that behavior."

She says the Spectrum Family Support Partner Program accomplishes this through "mini-trainings" that are highly adaptable to parents' needs and time constraints. Training may take place in one-on-one meetings over a quick coffee, or in small group sessions. 

In her work as a parent advocate, Burton says she focuses on teaching parents that in-home medical services, educational services, and specialized equipment are available for their children, and that health insurance will pay for much of it.

"That's not being taught," she says. "... And actually, when the parents come to that workshop, they find out all these resources that their kids can have, and supportive services they can have in their home, and also at school."

Burton says she also tries to assure parents that "their kids will be able to function." She says her overall goal is to "educate you for you and your baby to be successful in life."

"Life just don't stop right then and there because of the diagnosis," she says.

Green has seen transformative effects among the fathers he's worked with. He says people often come to his support group with the desire to vent, but they move from catharsis to vulnerability and eventually a sense of "brotherhood and camaraderie."

"We've had fathers go, like, 'Man, I really tried your suggestion and it really worked,'" Green says. "There's a lot of positives and joy that come out of it because we're bouncing ideas off of each other."

Continued ASD support for families of color

Although the Color of Autism Foundation's current grant period for the Spectrum Family Support Partner Program is nearing its end, Proctor says the foundation is "gonna keep at it."
Steve KossCamille Proctor.
"Just like everyone else right now in the current climate, we wish we had more money and more time, because there's a lot more that can be done for these families," she says. "But we've been successful in just creating more programming that is in alignment with promoting and creating empowered advocates within the community."

Green is rooting for the foundation's continued success in supporting other families of color through the "rollercoaster of emotion" he experienced when he realized his son had ASD. He says the Color of Autism Foundation is doing "phenomenal work."

"I think it needs more recognition, and I hope that there are people out there that can follow the blueprint and collaborate and also do good work as well, because we definitely need it in our community," he says.