Autism while Black

By JHODIE-ANN WILLIAMS | 11/25/2015, 12:10 p.m.
If you’re Black, you’re not allowed to have a developmental or mental disorder.

If you’re Black, you’re not allowed to have a developmental or mental disorder. It’s an unwritten code passed down through generations. At least, that’s the general perception within our community. If you do, you’re not allowed to talk about it. It’s taboo.

However, we are living in a racially divided system that already places our kids at a disadvantage. We can’t afford to do the same. We can’t afford not to talk about it. We can’t afford not to acknowledge that Black children battle with psychological issues too, because our children will end up paying for it with their lives.

Renowned psychologist and author Dr. Jeff Gardere said that the outlook that people of color have when faced with the challenges of caring for children with special needs is connected to the access they have to help.

“Because we don’t have the resources and support that other cultures have, we are left to dealing with autism on our own, and therefore it’s a little bit more difficult for us to come to that realization and to find the resources that we need,” said Gardere. “But like any culture, we love our children, we love our children who have autism and want to support and help them grow in the healthiest way possible.”

Studies from the Centers for Disease Control and Prevention show that African-American children get diagnosed with autism 18 to 24 months later than white children. Early diagnosis is crucial to countering some of the symptoms that come with autism.

Lorna Downer, a writer, activist and mother to Shiloh, her autistic teenage son, was able to get him diagnosed by 3 and a half years old—earlier than most Black children, but similar to the diagnosis time for whites.

“I pushed and demanded meetings. I think if I hadn’t done it, he would’ve been diagnosed much later,” said Downer. “You either get a late diagnosis or you fight and push to tell people that there’s something happening with my child that needs addressing.”

Shiloh began showing signs at 5 months, and by 9 months, Downer was sure something was off.

Last week, Darius McCollum, 50, was arrested again. This time he stole a Greyhound bus from the New York Port Authority. His first arrest came in 1981, when he was 15 and drove an E train from 34th Street to the World Trade Center. He memorized the subway system by the age of 8. In 34 years he has been arrested more than 30 times for stealing trains, buses, trespassing on transit property and impersonating an MTA worker. He has been sent to state prison—including the notorious Rikers Island—six times. McCollum, who is Black, has a fascination with mass transportation. He has Asperger’s syndrome, a high-functioning form of autism, and being fixated on a particular thing is one of the symptoms. After his latest arrest he said, “I’m stealing a plane next.” Prison has not deterred McCollum from committing these crimes, but perhaps something else could have—early detection of his disorder.

“If he is going to be charged with anything, then the people who have failed him—the clinical team that should’ve put some intervention in place from when he was a young teen—should be charged double,” said Downer.

Downer said that she’s sure that if McCollum’s school files were looked into that there would be warning signs about his condition. Perhaps they would find notes from teachers about class disruption, lack of eye contact, inability to understand social and emotional issues, awkward mannerisms or repetitive speech. These are all symptoms of Asperger’s, according to Autism Speaks, a leading advocacy organization—all of which were probably dismissed as McCollum misbehaving or “being weird.”

“Our children don’t physically look disabled, because they seem, outwardly, that they look like every other child,” said Downer. “People just assume that you’re a bad parent.”

Black parents need to be educated on the symptoms, testing and treatment options so that they can advocate for their children. When Downer, who also visits with families of autistic children to deliver training, visits different homes or support groups she sees the disparity.

“There’s usually one Black person or two. Majority are white,” said Downer.

A study from Autism Speaks indicated that regressive autism—losing early language and social skills—is twice as common in African-American children as whites. Before this new report, race was not noted as a dividing factor. Armed with this new information, Black parents should be diligent and ask why.

For years, the CDC has been scrutinized for withholding studies that link autism in African-Americans to vaccinations given to children before the age of 3. In 1996, it was reported that in 1989, the CDC was administering experimental vaccines to African-American and Latino children in Los Angeles without telling their parents that the drugs were experimental. During this year’s Million Man March, the Rev. Tony Muhammad, the Western Regional Representative for the Nation of Islam, took to the podium to reveal that Robert F. Kennedy Jr. told him some “shocking” and “terrible” news about the CDC in Atlanta. “It had been brought to our attention that the senior lead scientist for the Centers for Disease Control has admitted that the MMR vaccine and many of the vaccine shots have been genetically modified to attack Black and Latino boys,” said Muhammad. Over 70 years ago we had the infamous Tuskegee syphilis experiment, and it lasted 40 years. Nearly 30 years ago it was the CDC’s scandal in Los Angeles, which was kept quiet for nearly 10 years. Now, in 2015, it’s Georgia.

Kennedy has since denied that, that was the content of his conversation with Muhammad, according to reports from the Blaze, a news website founded by conservative radio and television personality Glenn Beck. Whatever the conversation was, the theory of autism being linked to vaccinations is a prevalent one. Downer believes that vaccinations stunted her son’s development.

“I have videos of him interacting with me when he was about 1, and then after his vaccines he seemed to regress again,” said Downer.

Changing how Black children are dealt with in the medical world begins with acknowledgement at home. It’s how we can get one step closer to making informed decisions about the welfare of our children. For more information on diagnosis, treatment, statistics or support groups, please visit thecolorofautism.org and autismspeaks.org.