Autism is a social justice problem

A child with autism is more likely to do well if his mother is white and educated.

This is the message of a study just released in the journal Pediatrics, and it’s something we need to pay attention to—now.

Researchers from Columbia University wanted to find out what happens to children with autism over time. So they looked at the records of more than 6,000 children with autism who were enrolled in California’s Department of Developmental Services (DDS). To get into DDS they had to be referred, and their diagnosis had to be confirmed by someone with expertise in autism.

What they found was that when it came to social and communication skills, for the most part the kids fell into groups ranging from low-functioning to high-functioning. The kids did make progress; the most rapid gains were before age six, and the high-functioning kids tended to make more progress than the low-functioning ones. Even as they made progress, they tended to stay in the group they started in—with one notable exception. That exception was a group the researchers called the “Bloomers.” These kids were low-functioning when they were diagnosed, but made rapid gains and ended up as high-functioning.

The researchers also looked at the birth records of the children, which gave them facts about the mother’s age, race, place of birth, education level and whether she was on Medi-Cal, the California version of Medicaid (the public insurance for low-income people). This is where it gets really interesting. They found that:

Kids in the low-functioning groups were more likely to have mothers who were non-white and/or foreign-born, less-educated and on Medi-Cal.
Kids in the high-functioning groups were more likely to have mothers who were white, more educated and not on Medi-Cal.
Bloomers were more likely to have mothers who were white and educated.

This is a real social justice problem.

The researchers didn’t have information on what kinds of services or treatments the kids got, so they couldn’t give an explanation for what they found. But they guessed, as all of us might, that children with more educated and affluent mothers not only had better home and neighborhood environments, but access to more and better services—and parents who were more able to fight for those services.

That makes total sense to me as the pediatrician of many autistic children, and is a social justice problem in and of itself. But there is even more that worried me reading this article. Why, for example, were fewer poor and minority kids in the high-functioning group? Do they slip through the cracks entirely because they are muddling through, and never get diagnosed or get services? And why are there fewer white and affluent kids in the low-functioning group? Is there something about being poor or minority that makes autism worse from the beginning?

As we do further research on autism, we are going to need to look more closely and gather more complete information on all the different variables in each child’s life and treatments to really understand the full picture. What exactly is going on at home with each child? How exactly does a living environment impact a child with autism? Are there biological factors associated with race, income and education? This is too big and important an issue to leave any stone unturned.

Recently, the Centers for Disease Control (CDC) came out with the news that 1 in 88 children has autism, up 23 percent since 2009. It’s five times more common in boys—the rate for them is 1 in 54. And here’s what makes the Pediatrics article even more worrisome: The biggest increases were among Hispanic and black children—their rates of autism went up 110 percent and 91 percent, respectively. This is not only a social justice problem, it’s a public health problem.

There is hope for many children with autism—this study shows that clearly. But it is fundamentally unfair when hope—or lack of it—is an accident of birth.

We say that we are a country founded on the idea that all men are created equal. Autism just may test us on this. If all men are created equal, if all children are equally deserving of a good future, it’s time to get to work. It’s time to put real money and real energy into understanding autism’s inequalities—and ending them.

Claire McCarthy is a primary care physician and the medical director of Children’s Hospital Boston’s Martha Eliot Health Center. She blogs at Thrive, the Children’s Hospital Boston blog, and Vector, the Children’s Hospital Boston science and clinical innovation blog.