For us, By Us: Uplifting the Black Autism Community

When Josselyn Okorodudu’s son was diagnosed with autism at the age of five, she remembers experiencing a world of devastation and loneliness. Six years have passed since then, but during that time Josselyn has worked to carve out a space for her son Kai and other members of the Black Autism Community. “Now that my son is eleven and I have more space to consider what is going on in my community, I really felt compelled to reach back a hand to those parents who just learned of their child’s diagnosis. I know those parents feel just as isolated and lost as I did, so I wanted to help build a space for all of us.”

Josselyn and her son Kai

In order to uplift families and create space for Black people diagnosed with autism, Josselyn co-founded Our Tribe alongside Latonya Chichester in August of 2021. They are currently raising funds through ioby as they look to build out their organization and accelerate a movement for equitable change. The project has raised nearly $2,000 so far, but they’re looking to reach their goal of $11,000 before the campaign closes at the end of this year. 

“I am a founder and member of Our Tribe because I am a part of the Black Autism Community,” says Josselyn. “I don’t want everyone else to have to go through what I did to get support so that’s why Our Tribe was uplifted. We need and deserve a community.” 

Josselyn notes that unfortunately, the struggles she faced before, during, and after her son’s diagnosis are not struggles unique to her alone. Black children with autism are misdiagnosed at a rate five times higher than their non-Black peers. Layered with this, Black children receive an autism diagnosis on a two to three year delay. A delayed diagnosis drastically slows down the process of providing children and families with the intervention and help they need. 

“Many children have been held back because of this delay in intervention. With my own child, I began raising signs of concern with the doctors when he was very young. Their concern didn’t rise high enough to actually get him tested.” Josselyn’s son Kai went years without being tested or diagnosed. 

Since 2014, the rate of Black children diagnosed has increased by nearly 40%. Josselyn ultimately sees this as a good sign since it means more children are being tested and treated, but there’s still a lot of work to do. This fall, Our Tribe has partnered with Cincinnati Children’s Hospital Medical Center to conduct research and help identify deficits within the system of diagnosis. “We want to ensure we are targeting ourselves for research. If that research isn’t being done, we are losing.”

While Our Tribe is committed to combating systemic injustices in the healthcare system, they are also busy taking care of their own at home and in their neighborhoods. Josselyn says, “At the core of Our Tribe, yes, we are trying to shift systems– but we are also trying to build community and create a space where we can connect with each other.” She sees stress and isolation as barriers to a parent’s resilience and to managing life before and after a child’s diagnosis. As a result, a lot of Our Tribe’s programming is focused on shoring up a parent’s ability to persist. The group helps accomplish this by providing community support, monetary assistance to offset the costs of raising a child with special needs, and providing a range of therapeutic resources. 

Members of the Our Tribe community gathered together

Josselyn recalls a particular event recently that brought her joy. “One of our board members who has autism, Miss Gwen, has a 21 year old son named Max with autism as well. Over the past year she has shared her fears over Max feeling too isolated and shut out from his peers. We had a bowling event for adults and teens a few months back and Max met a girl! Both of their parents connected and now they’ve been on several dates and text all the time! It brings me joy knowing these spaces can exist for our children.”  

Josselyn believes in the importance of having Black people with autism involved at all levels of civic participation from leadership to strategic implementation. “I think it’s very important for the Black community to be involved.  We have some stake and heart in this game. We know exactly what we need because we’ve been living it. Who would know better than us?”    

Another key aspect of Our Tribe’s identity is their location in Cincinnati. When thinking about her relationship to Cincy Josselyn says, “Like every kid from the midwest, I grew up here and thought I would run away to New York. But as I got older and became involved in activist spaces, I knew if I was going to do this work I wanted to do it here in Cincinnati.” Her project was a part of the Greater Cincinnati Community Recovery Match Program, which allowed many of Our Tribe’s campaign donations to be matched.

Josselyn hopes to use the money raised through ioby to build out Our Tribe’s programming capacity and to further expand the work they’ve done over the past year. This is her first time raising money through a crowdfunding platform, but she believes in the power of putting your heart on the page and making something happen. “I just want to share this experience with my community and let people know that Black people with autism are deserving; they are not living throwaway lives. They are deserving of all the love, opportunity, care, and community support that everyone else gets. That’s what we’re going for at Our Tribe.”