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Claire McCarthy, M.D.

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Study Reveals The Social Justice Problem Of Autism

Posted: 04/ 2/2012 6:16 am

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 6000 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 a 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?

Just last week the Centers for Disease Control came out with the news that one in 88 children has autism, up 23 percent since 2009. It's five times more common in boys--the rate for them is one 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. Not only is this 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.

 

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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 ...
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 ...
 
 
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05:08 PM on 04/06/2012
autism is overblown. Sure they have the ones like in that show Touch but most people labeled autistic are just what we called in the "pre-everything is a disorder and needs medication"..as shy and awkward..people aren't cookie cutters and this society forcing a certain behavior on people.
03:17 AM on 04/04/2012
I agree with you fully and passionately. In fact, I suspect that the CDC's 1 in 88 figure is significantly lower than it should be for exactly this reason.

However, speaking as an adult autistic activist -- what next? How do we start to rectify the problem???
08:36 AM on 04/03/2012
none of this is surprising at all. but here's a thought in addition to the obvious (that socioeconomic class affects whether and when you get treatment): one branch of autism research suggests there is a correlation to the amount of vitamin d the mother gets while pregnant. if that proves to be a factor, it could mean that, class issues aside, the situation is likely to be worse for people with darker skin the farther north they are.
06:50 AM on 04/03/2012
Some of this may be attributed to the shy toddler being diagnosed incorrectly; I know of one instance personally. Some of the testing methods need to be expanded to distinguish between the child that can't verbalize something and the one who doesn't want to engage in a strange room of people he/she doesn't know.
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Jarhead Vet
Eliot Spitzer for President!!!
12:42 AM on 04/03/2012
"Just last week the Centers for Disease Control came out with the news that one in 88 children has autism, up 23 percent since 2009."

And This:

"Rate of Peanut Allergies in Children More Than Tripled Between 1997 and 2008, Study Finds"

I'm no scientist, but if someone really rich doesn't hire someone really smart, really soon to figure out why stuff like this is happening...

I think we're in for a world of hurt.

Someone way smarter than me needs to start connecting more dots.
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minto
you know what they say about opinions...
12:37 AM on 04/03/2012
I know that my son that he had an advantage because I am educated. My son wasn't even looking in our direction when we called his name at 12 months old, let alone talking. I took him to the doctor and was told that he is a boy and will "develop slower" and that I shouldn't worry so much. As a teacher, I knew that was wrong so I fought to get my son tested and enrolled in the infant learning program. Then I learned how horrible our local infant learning program was so I read books and talked to everyone I could to find out what to do with him. I then worked with him everyday so that now he just turned 8 and he is academically with his peers on most subjects and has a bright future.

However, I know that if I didn't have the education and self-confidence to fight that doctor, then my son wouldn't have gotten diagnosed until much later, and even if he had been diagnosed, he wouldn't have gotten any help until the age of 3 because of the lack of local services.

One thing that would help all kids is if doctors are more informed of what early signs of autism are. Doctors are the professionals that see kids before the age of 3 but they often think mothers worry too much and they are focused on physical well being instead of developmental well being.
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12:03 AM on 04/03/2012
Most women do not know the 'Mother's Prayer' or know of the new children like them, Indigo's, Crystal's or Rainbow's. Perhaps they would prefer to go 'finger popping with Jody? It is frustrating that women do not know the complete book's on health like the one below. It is more frustrating that women don't know the 'Mother's Prayer or the meaning of basic teaching stories:
11:58 PM on 04/02/2012
This is an important discussion that should be part of the health care debate. My son received outstanding early intervention to deal with autism. It made a critical difference.

Those who are following the "every man for himself" approach to health care being heralded by the Republicans should understand that money spent on early intervention and on education for ALL produces a productive society.

We must reach out and help one another. We are all in this together.

Universal heath care should be a right, not a privilege.
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SithRose
Mommy, I need Cthulhu. He keeps bad dreams away.
01:19 PM on 04/03/2012
They also need to understand that if our children do not get the help they need NOW, they WILL cost more in the long run, as they will be less able to function on their own. Net loss for short-term gain is a direct result of the "every man for himself" approach.
11:05 PM on 04/02/2012
In the meantime, pay no attention to age as a factor in causing autism:

http://www.reuters.com/article/2010/02/08/us-autism-age-idUSTRE6174UC20100208
03:01 PM on 04/03/2012
We were 29 and 30 when our daughter was born. I was a few years older with my son - we have a girl with autism, a boy who is normal. Statistics don't always tell the story.
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Syl 13
We're all mad here
11:00 PM on 04/02/2012
The REAL social justice issue that must be addressed is the cause of autism. No, I'm not an anti-vaccine nut, or a conspiracy theorist. I'm merely someone who has seen autism treated, and seen the links between autism and adult disorders such as lupus and chronic fatigue syndrome.

How do we get from one in 200 to one in 88 in less than twenty five years? We can't rule out misdiagnoses and panic, but that can't account for all or even the majority of that growth. We are looking at an epidemic, and instead of trying to address the source, we're offered...awareness. Support. And, of course, requests for money, which will go not to research, but...more awareness and requests for money.

Please, look up NIDS (Neuro-Immune Dysfunction Syndrome), "Immune Autism", and the literature linking autism-spectrum disorders to immune responses (http://www.sciencedaily.com/releases/2004/11/041117004123.htm; http://www.sciencedaily.com/releases/1998/10/981031181106.htm).

Treating the symptoms without treating the cause does nothing! But there is an industry built around autism, one which refuses to acknowledge even the possibility that it's anything other than a life a sentence!
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slc1950
My micro-bio is empty and will remain that way.
11:26 PM on 04/02/2012
Wow - I always thought there was some connection between the immune system and autism. Specifically, the immune systems of the parents and how it impacts the child. There is no test for how fragile a newborn's immune system is or might be as the baby gets older.

I bookmarked the articles. Thanks.
11:31 PM on 04/02/2012
exactly. Don't talk about the cause of autism, just spread some white guilt.
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cdncommentator
10:56 PM on 04/02/2012
One in 54 boys is autistic??

Either it's being over-diagnosed or we're facing a huge health crisis that could spell the end of humanity!
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SithRose
Mommy, I need Cthulhu. He keeps bad dreams away.
01:20 PM on 04/03/2012
The revision of humanity, perhaps. The end? I don't think so. Adapt, react, and overcome.

So far we're not doing so well on any of those. We can do better.
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cdncommentator
07:56 PM on 04/03/2012
I just don't believe 1 in 54 boys has autism.
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boberrigan
Only the mediocre are always at their best.
10:42 PM on 04/02/2012
At least today they have a greater understanding of autism and the spectrum disorders. We had my daughter evaluated in 1984 and she was misdiagnosed. We didn't find out until '04 that she had Asperger's. I still grieve for the missed opportunities, but even now our state offers nothing for adults with autism. If you are lucky enough to live in a state or community that has progressive mental health providers and a school system that promotes awareness and early intervention you are very fortunate.
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Zahriya
10:17 PM on 04/02/2012
This is awful. You can argue this for people whose children arent autistic. Of course people with higher socioeconomic standing are going to have more success with their children. Yes, you can be in the lower end of social class and still have smart successful children. However the more resources available to you, the more likely your child can be successful. In the case of autism, higher economic status will cause mothers to naturally expend any resources necessary to allow their child to live a normal life.

We dont even have money for the public school systems to give non-autistic children of low-socioeconomic status a chance at life most of the time. Why would you possibly expect money to go into this? It's the sad reality of this country right now.
11:33 PM on 04/02/2012
I agree...there is definitely a parallel with non-autistic children. Yes, the best and brightest will be successful, but when it comes to the average or "below"? The rich have a huge advantage...they teach their children how to work the system and how to be their own "advocates." So the C minus white rich student with learning disabilities has an advantage over the non-disabled B student whose low-income parents aren't native speakers of English. It's unfair and sad. These results aren't surpising to me at all.
10:25 PM on 04/12/2012
It's not just money though. In Massachusetts, where we have a great special ed system and have universal health care where all families can get intensive services for a child with autism very easily, we still have this issue. Our poorer families aren't recognizing and referring children as early, often can't commit to services because of transient living situations and personal limitations, and don't follow through as much with implementing strategies and teaching in the home. What needs to happen is eradication of poverty so that poorer families have as stable of lives as richer families and can really focus on playing with and enjoying with their kids, and so that people with less education and resources aren't warehoused in housing projects where they never interact with children and families who have more education so that the families are learning and sharing from one another. When your life is chaotic and you live in the projects where people complain about how their toddlers won't stop asking questions and touching things, it can actually seem like a great thing that your child sits and lines things up all day and doesn't bother anyone, doesn't have any interests that involve asking for things that cost money, etc. The problem is isolation and lack of social supports who aren't in the same chaotic boat.
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sherri yandle
10:10 PM on 04/02/2012
The color of a parent's skin and their educational level should never, ever be a factor in the child's ability to receive services. Our country has some serious flaws.
10:17 PM on 04/12/2012
Agreed, and parents shouldn't have to fight for services or know how to "talk the talk" in order to get services.

HOWEVER, in order to get assessed and diagnosed, a parent has to realize that something is going on with a child and has to bring this up with the pediatrician or self-refer to a 0-3 program. I find that in my work, parents with less education don't recognize developmental/communication concerns. Even when we point them out, families with less education don't get what we're talking about in terms of things like using eye contact, using gestures, bringing things to show, etc. My families with less education will say at their child's initial evaluation that the child does not talk, but is otherwise totally fine. They usually don't know whether their child (who is 2 or 3) can sort objects, have an exchange with a peer, help with household tasks, and other things that would distinguish a typical child with delayed speech from a child with a serious developmental disorder, because they haven't tried these things.

There's also the issue that people in poverty and people of color have historically been labeled as slow, deficient, etc. when this is not actually true, so a lot of people are understandably resistant to having their child evaluated.

Also, even when a child has been diagnosed and is receiving services, parents with less education are less likely to understand and follow through with strategies in the home.
09:40 PM on 04/02/2012
Like I said -Mankind is Pure Evil- mental health professionals are not interested in finding a cure, pure evil....