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.

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  • NewMexicoRam

    Well then, it seems that just about any disease could be classified a “social justice problem.”

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    Thanks you, Dr. McCarthy, for pointing out research demonstrating that it is better to be rich than poor.

  • westeasterly

    This is an issue well worth considering, but I have to take issue with the notion of “social justice.”  This is essentially defined as “using the force of government to control the actions and wealth of your neighbors.”  It may be a benevolent sounding idea, but the realty couldn’t be further from the concept of benevolence.  If everyone is truly equal as you say, why should anyone have the right to steal from someone else in order to bring about some warped concept of “justice?”  Children of poor families will always have disadvantages to overcome, the solution to which is providing opportunities, charity care, and compassion.  But of course it’s always easier to advocate the government use theft, force, and wealth redistribution, as then you get to both provide your services and still collect your usual fee.  You win, and you never have to face the people you stole from.  That’s what “social justice” is.

    • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

      Google the term “postcode lottery” with terms like “NHS” or
      “healthcare”. The term “postcode” being the British equivalent of our
      Zip code, meaning basically, where they live.

      If you’re in the UK’s allegedly egalitarian NHS, how well you do with
      healthcare, morbidity and mortality still varies where you live. They
      realize that across the pond, and they use the term “postcode lottery”
      to describe the same thing described here.

      The article is vapid at best, saying it’s better to be rich than poor.
      No kidding. At worst, well, how many people did the Soviets and the
      Communist Chinese have to kill to create their “social justice”?

  • http://www.facebook.com/stlevine Steve Levine

    As the father of a 22-year-old son with autism (http://www.kevinmd.com/blog/2011/03/tma-vaccines-autism-andrew-wakefields-wake.html) — and the husband of a tireless lady who has battled first the schools and now the “social services system” on his behalf — this is the key point: “parents who were more able to fight for those services.” Ever since my son’s diagnosis, I have made sure my employers understood that his needs would take me out of the office more than a “typical” father. And I’ve been extremely lucky to have their support. I’ve also been lucky enough to make enough to allow my wife to stay home to fight those detailed battles and — for a while — run my son’s home school program.

    Now as we detail with support services for adults with disabilities — such as employment and SSI — we both wonder how someone without a full-time advocate can possibly navigate the system. Even worse, how could an adult with a disability possibly figure out and jump through all the hoops set up?

    This IS a social justice issue. Like most other disability rights issue, it’s a civil rights issue. Unlike some of the commenters below, I think think the government would find it in the national interest to make the system easier to access and navigate. The assumption always seems to be that people are trying to cheat the system. That’s why they set up all the roadblocks. Doctors have neither the time nor the skills (usually) to help families jump over these roadblocks. The system needs to change, spend less money on “fraud prevention” and more on making sure people with disabilities get the services they need as quickly as possible so as to lessen their long-term cost to society — and increase their long-term contributions to their families, communities, and themselves.

  • http://profiles.google.com/mhirzel Mary L. Hirzel

    “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.”

    I can supply them with an explanation.

    As the NEMJ has recently noted, it is the well-educated, higher income parents who are accessing alternative treatments and stopping vaccination.

    Less privledged families must rely on the advice of pediatricians and pharmaceutical ruled “healthcare” facilities, which have been ignoring and stone-walling about the true causes (there are more than one, but all are toxic exposures) of this epidemic for decades.

    It’s more than a social justice issue.  It’s the end of the legitimacy of an entire profession.

  • http://www.twitter.com/alicearobertson Alice Robertson

    What if it is a DNA problem with a predisposition like maybe sickle cell anemia or other problems?  If it’s just an education problem the internet is taking care of that, and indeed, the poster was right that the better educated often do foresake shots because they feel better able to challenge mislead doctors.