(NewsNation) — After research by the Centers for Disease Control and Prevention was released early this year, there was a flurry of articles decrying autism is now more common among Black children than white.
Yet this framing largely misses the point, says Camille Proctor, founder of The Color of Autism.
“There is an increase in diagnosis, but not prevalence,” she said. “The increase in diagnosis is mainly because of organizations like mine. We finally (have) been able to really reach the families and get them to embrace autistic people.”
While the stark diagnosis disparity has closed, there’s still a lot of work to be done, Proctor said. Black children are likely to be diagnosed later than other children. Black families still have less access to or choice in services. Black autistic children are still more likely to do poorer in school.
NewsNation spoke with Proctor about her work to inform parents on how to get their Black child diagnosed — and advocate for Black children once they have the diagnosis.
This interview has been edited for length and clarity.
NewsNation: Why did you start a program specifically for Black families with autistic children?
Proctor: It took me a long time to get a diagnosis for my son, mainly because he made a lot of eye contact, liked people and liked touch. I was happy to get a diagnosis, but I was clueless as to what to do.
I would go to support groups of all white women. And I talked about the stuff that was important in my community, like, “What’s going to happen when he’s 12 and he gets approached by the police, and he doesn’t understand how to yield or he can’t communicate?”
And they will say, “Nothing, the officer will know he’s autistic.” And I’m like, that’s not how life works for Black people. I decided that there needed to be a place for Black families to go to discuss these types of things.
NewsNation: What are some of the challenges that Black families uniquely face getting their child diagnosed?
Proctor: I noticed that there was an overabundance of oppositional defiance diagnoses being given to Black boys, and a white child with the same behavior was autistic. I started to explain to people that this ODD diagnosis is not a good one; it is a fast track to the criminal justice system.
There’s also this cultural thing where doctors are sometimes intimidated by Black parents, so they just brush it off. Or they just don’t care as much as they should.
(Parents need to have) these hard conversations with your physician, saying “I need this referred out, demanding that it gets referred out.” And this is what we tell parents: If your physician won’t refer it out, then you call your insurance company and you say this is what’s going on with your child. You need them to give you a referral and approve the referral.
NewsNation: Getting a child diagnosed is the beginning, right? How are you helping parents after?
Proctor: We have five-week trainings (facilitated) by Black service providers, like a developmental pediatrician, a speech-language pathologist, a therapist that does trauma-informed Applied behavior analysis.
And we work with parents to get over themselves. A lot of times parents put themselves too much in the equation of what their child needs. It’s important to embrace who your child is. Because if you don’t, they can embrace themselves.
Then we enrolled them in a class with Natasha Nelson, who was actually autistic and a mom of two. And she teaches them how to positively discipline their child on the spectrum. We bring in a nutritionist to teach people how to manage a diet with a child on the spectrum.
We want the parents to be able to advocate properly for their child who will become an adult — and then we want that adult to be able to advocate for themselves effectively.
NewsNation: Coming full circle to your early concerns as a parent of a Black kid with autism, you have a unique program helping educate police. Tell us about that.
Proctor: We paired police officers with autistic youth during COVID for six weeks. They met online, worked on projects together and talked.
The value we got out of it was this: A cop from North Carolina was walking down the street, he saw a Black kid and he was dancing and looking all around the car. And he walked up to the kid and he said, “Do you like that license plate?” And he named all the states and logos on the license plate.
The cop said to me, “Ms. Camille, I never would have done that. Prior to me being introduced to your children, he was a perp. Now I look at behaviors, and I notice things.”