Parents of color raising a child with autism are constantly fighting an uphill battle: whether dealing with misdiagnosis, or not feeling they have anywhere to turn, it can be an emotional journey on an often uncharted path.
When her son Ari was diagnosed with autism at age two, Camille Proctor felt like she had nowhere to turn. “Nothing could prepare me for what would lie ahead,” says Proctor. Taken aback by the cost of therapy and care for her son—along with trying to identify the best resources—Camille quickly felt the pressure to act. “There’s a lack of awareness initiatives from national organizations to engage communities of color. They weren’t walking or shining lights in underserved neighborhoods,” adds Proctor.
Rather than accept defeat, Camille felt empowered to become a voice for the black autism community. In March 2009, she founded The Color of Autism Foundation that specifically helps educate African American families to assist children with autism. “I wanted to create a thread that would connect families to services and information they need to care for their loved ones with autism,” mentions Proctor.
As Camille’s foundation points out, “autism affects children of every race, ethnic group and socioeconomic status.” And yet, many autistic children of color don’t often receive immediate care that results in the need for significant intervention down the road that can become quite costly. “Early Intervention is vital to development of a child with ASD [autism spectrum disorder],” notes Proctor.” The CDC states that white children are 30 percent more likely to receive an ASD diagnosis than black children, and almost 50 percent more than Latino children. As Camille says, the disparity is pretty clear, which is why a foundation like The Color of Autism is so necessary. “It’s so important for families to know the warning signs early on so they can seek out treatment. And it’s just as crucial to get support from a place that understands the very complex issues that families of color face,” reiterates Proctor.
In speaking about autism in the black community, there’s one vital reason why we need more resources that often gets overlooked: so that our children don’t end up in the system. “Many undiagnosed and misdiagnosed persons with autism end up in the criminal justice system each year,” Proctor points out. “Children with autism don’t always understand social cues, that could lead to possible harm. As African American parents, we have to teach our children what it means to yield—especially in today’s climate, where the African American child can easily become a target.”
Since the launch of her non-profit, The Color of Autism, Camille aspires to not only serve families with an autistic child, but also, to educate the black community as a whole. “It’s important to rally behind this cause. There are families that need support and understanding,” adds Proctor. “We need to lessen the isolation that many parents experience that, in turn, will foster and create a community of acceptance. Autism is not a death sentence!”