Children of color with autism face disparities of care and isolation
JUDY WOODRUFF: Now, the story of an African-American family that knows autism firsthand and the particular challenges facing communities of color.
Autism rates among African-Americans are the same as rates among whites, but African-American children are often diagnosed with autism at an older age, missing potential years of treatment.
Special correspondent John Donvan and producer Caren Zucker have our report.
JOHN DONVAN: Here's how handsome this man named Jason Harlan is, this 29-year-old, who lives just outside Chicago. And it's his mother's thought — her name is Debra Vines — that with looks like these:
DEBRA VINES, Founder, The Answer, Inc.: Jason's going to be the first autism model on the cover of "GQ" magazine.
JOHN DONVAN: That's the dream?
DEBRA VINES: It is.
JOHN DONVAN: Now, the obstacles to that ever happening may seem huge, because Jason does indeed have autism of a kind that means he has quite limited language, so that only a very few people like his dad, James, have the insight it takes for real two-way communication with him.
Jason also has a limited repertoire of skills, like tidying up, which he excels at and loves. But, in most ways, for meeting his own basic needs, he has to count on constant help from others.
And then there is this other factor complicating Jason's journey through life. He is black. And when you are black and autistic, you face a set of disparities that significantly raise the challenges. They begin with the fact that, when it comes to autism, diagnosis skews white.
Neuropsychologist Laura Anthony puts it bluntly:
LAURA ANTHONY, Neuropsychologist: If you're anything other than a 7-year-old white boy, even if you're a 7-year-old white girl, you're less likely to be identified with autism.
JOHN DONVAN: It's in the CDC's own statistics, where the reported autism rate among black 8-year-olds, 13.2 kids per every thousand, lags the percent of white 8-year-olds by nearly 20 percent. Among Latino children, the gap is even larger, at 50 percent.
Anthony is a clinician and researcher who works with a lot of kids who have autism, like 9-year-old Jaja (ph). She says the undercounting of children of color denies them appropriate care. It happens in part because autism diagnosis is a judgment call on a child's behaviors, and inadvertently:
LAURA ANTHONY: We have a bias, even though we don't want to, that that's what autism looks like.
JOHN DONVAN: Jason, in fact, escaped that particular bias. He was diagnosed with autism at 18 months, which is actually early.
Rather, it is another sort of discrepancy that has challenged him, which his mom illustrated by taking us all out on a stroll to where the Des Plaines River, north of Chicago, flows between two communities, Maywood, where she lives to the north, and which is mostly black, and to the south, the mostly white community of River Forest.
DEBRA VINES: Once you're in River Forest, the services for the special needs is like the Holy Grail. The services just open up for special rec, for education, for advocacy, for ABA.
JOHN DONVAN: So, compared to that way, where you live?
DEBRA VINES: There's no special rec this way.
Oh. It's a dirty job, but somebody's got to do it.
JOHN DONVAN: Now, Debra is not a complainer. She's an agitator. There's a difference. The first afternoon we spent with her, she was setting the table for a gala dinner and auction in support of her own startup, whose name is:
DEBRA VINES: The Answer, Inc.
JOHN DONVAN: The Answer?
DEBRA VINES: The Answer, because so many families are always asking questions, so we want to be able to provide the answers.
JOHN DONVAN: Because she knew, firsthand, since Jason was little back in the 1980s, just how far behind her community was in being able to help people like her boy.
That's when she had to travel half-an-hour by train to get to a support group, only to find that:
DEBRA VINES: I was the only African-American there. And this was, I would say, middle- to upper-class families, so they would drive a Mercedes. They would, you know, had on nice jewelry. They had their children with specialized services, just an array of things. And I just felt really isolated.
JOHN DONVAN: Did you get a cold shoulder?
DEBRA VINES: Absolutely not. They were very welcoming. I guess a lot of it might have been me, the fact that I had to go outside my community, and then find out that you're doing it all wrong, Debra. You're doing it all wrong. And it's because of where you live.
JOHN DONVAN: Meanwhile, she also learned that her own African-American community wasn't entirely accepting of Jason's differences.
DEBRA VINES: One particular church that we were going to, the pastor came and told me that a couple of people had come to him and said that they were uncomfortable with Jason standing up during the sermon, and being disruptive, he was being disruptive, and things like that.
JOHN DONVAN: And James told me that isolation comes also from shame, which he admitted to feeling, when he started to feel embarrassed that his kid wasn't like his friends' kids.
JAMES HARLAN, Father of Jason: These milestones, they're talking this, that, and the other. And I said, well, Jason learned how to tie his shoes. And then you get these looks. He's 7 years old and he just now learned to tie his shoes?
JOHN DONVAN: What did you feel?
JAMES HARLAN: I literally got a warm feeling came all over me from being embarrassed. And what that made me do is kind of withdraw myself, you know, being honest, let me draw back. I wouldn't say anything about by son. Eventually, I quit going to the sports bar.
JOHN DONVAN: The isolation hit other families in the community with autistic kids. And there were many. These are their faces. But they were cut off from each other, instead of organizing to demand more support for their loved ones, as families in white communities had been doing for decades.
But this local state senator, Kimberly Lightford, says shame and stigma are only part of it.
KIMBERLY LIGHTFORD, Illinois State Senator: I think the connection is just being underprivileged, underutilized, communities of color not receiving proper resources, lack of job opportunities that provide insurance.
So, you have families, they just do enough to get by, but all of those essentials, I can't go to the doctor because I'm on public assistance, or I can't go to get this additional help, just because I feel like I can't do it.
JOHN DONVAN: But here's what's changed around Maywood. Remember that gala that Debra was setting up? Well, now it's the night itself, where she showed up, dolled up like it was the 1920s. So did everybody else. Harlem Nights was the theme.
DEBRA VINES: Actually, Jason is the reason why The Answer, Incorporated was started, because of Jason, because if I didn't have a child with autism, I would definitely support the cause, but I don't think I would be doing what I'm doing.
JOHN DONVAN: And these many families, once cut off from each other, here, they were a big family together, out in public, proud of who they are, touched by autism, unburdened by shame, and grateful that Debra started The Answer.
MAN: It's helped to educate the community, police departments, other kids.
WOMAN: I feel like I'm not in it by myself with The Answer.
WOMAN: Thank God somebody, you know, especially a person of color.
JOHN DONVAN: There's also a program called Just For Men, which James runs. Having long since stopped being embarrassed by Jason, today, he feels grateful to have this man as his son.
JAMES HARLAN: And I tell the men at the meeting, I have learned how to love since I have had Jason.
JOHN DONVAN: More than ever before?
JAMES HARLAN: Yes. Oh, yes.
JOHN DONVAN: How so? Why?
JAMES HARLAN: Because he loves unconditional. There's no conditions tied to his love.
JOHN DONVAN: The Answer has served 4,000 families in its nine years, but, still, it's a work in progress.
One challenge met, however, concerns church. This is Jordan Temple Baptist, whose pastor Stephen Richardson, says autistic kids, autistic adults are all welcome.
REV. STEPHEN RICHARDSON, Jordan Temple Baptist: The fact of the matter is, it's not our church. It's God's church.
JOHN DONVAN: Which means it's for Jason and his family too. And now Sunday's are Jason's favorite day of the week, when, walking into Jordan Temple's foyer, he's greeted like this, where his face is all you need to see to know how he loves, and where, inside, he gets to act like this, up and swaying, when everyone else is praying in their seats, the very behavior that made him unwelcomed before.
But, here, it just doesn't matter, proving that acceptance doesn't take a miracle, not, perhaps, like getting his face on the cover of GQ, but who knows?
For the NewsHour, I'm John Donvan in Maywood, Illinois.