Autism Awareness: Is proximity a factor in diagnosing autism?

Posted by Lylah M. Alphonse  April 12, 2010 02:05 PM

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Maybe you've seen the posters hanging in T and commuter rail stations -- photos and stories of children with autism, and a question: "What does autism look like?" 

April is Autism Awareness month and, to answer the May Institute's question, a person with autism can look like anyone.

There's an event to mark Autism Spectrum Awareness Day tomorrow (April 13) at the State House in Boston, from 9 to 11:30 a.m. in the Great Hall. Hosted by Advocates for Autism Massachusetts and the Doug Flutie Jr. Foundation for Autism, the program aims to offer information about addressing the need for services for adults with autism and insurance issues faced by families of people on the spectrum, among other topics.

Late last year, the Department of Health and Human Services reported that autism was more widespread that previously believed, with about 1 in 100 children on the autism spectrum. The oft-cited link between the MMR vaccine and autism has been officially dismissed, and studies seem to show that now, more than ever, no one knows what really causes or triggers the disorders.

A new study by researchers from the Institute for Social and Economic Research and Policy at Columbia University published in The American Journal of Sociology shows that children who live near a child who has been diagnosed with autism are more likely to receive an autism diagnosis themselves. How could proximity play a part?

"From shared toxicants, through the diffusion of a virus, as a by-product of neighborhood selection, or through the diffusion of information about autism through social networks," the researchers wrote, adding that "meeting children with autism and having discussions with parents of children with autism could lead parents (of children not diagnosed with autism) to observe behavioral symptoms consistent with autism, to learn how to effectively identify and reach a physician, and to learn how to access and subsequently navigate services and service agencies."

The study took place in California, where autism cases handled by the state's department of developmental services increased 636 percent from 1987 to 2003, according to Science Daily. The Columbia University team studied data from more than 300,000 children born in California between 1997 and 2003, and found that children who live within 250 meters of a child with autism have a 42 percent higher chance of being diagnosed with an autism spectrum disorder with the next 12 months. Children who live 250 to 500 meters away have a 22 percent higher chance of being diagnosed, and the greater the distance the less the likelihood of a diagnosis. The "social effect" was more prevalent in cases of mild (or "high functioning") autism diagnoses.

One of our children is on the spectrum (he has Asperger's Syndrome), and I absolutely agree that exposure to a child with autism builds awareness -- perhaps even overawareness -- of the signs of spectrum disorders in other children. It's easy to see how increased awareness could lead to an increase in diagnoses; a generation ago, a child with autism would simply have been labeled "difficult" or "quirky," but now we have a better idea of what to look for (and how to help). Also: The autism spectrum itself has grown to include several things, including the all-encompassing PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) that would have been dismissed just a decade or so ago. 

Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com. You can read her other posts about autism here.

This blog is not written or edited by Boston.com or the Boston Globe.
The author is solely responsible for the content.

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15 comments so far...
  1. I think that should be 42 percent more likely to be diagnosed, for children within 250 meters, not a 42 percent chance?

    Regardless, a timely and interesting piece. I have a sibling with (rather severe) adult-diagnosed Asperger's, and it has certainly made my siblings and I look more carefully at signs in our own children.

    Posted by jsa April 12, 10 03:41 PM
  1. As a biostatistician, it should be "42 percent increased chance of being diagnosed as compared to children not living within 250 meters of a child with autism."

    Posted by akm April 13, 10 09:16 AM
  1. akm is correct. I suggest an immediate correction since many readers will not check the comments. But kudos for noting that MMR vaccine is not related to autism

    Posted by maus April 13, 10 10:36 AM
  1. Just a question - if these proximity numbers were reported in regards to a certain type of cancer, wouldn't we all be alarmed and looking at "cancer clusters"? Why is it different with ASD? I agree with the premise that parents who know a kid with ASD are more likely to notice the same symptoms in their own kids (that is certainly what helped me know that my 4 year old needed to be evaluated) but I would think there has to be more to it.

    Posted by PDD-NOS mom April 13, 10 11:31 AM
  1. Yes, akm, thank you -- it should be "42 percent increased chance." I've made the correction. Now... back to the discussion: Do you think that an increase in awareness of autistic symptoms could play a role in the increase in diagnoses in the US?

    Posted by Lylah M. Alphonse Author Profile Page April 13, 10 01:09 PM
  1. Its the vaccines.

    Posted by John April 13, 10 05:33 PM
  1. "...a generation ago, a child with autism would simply have been labeled "difficult" or "quirky" ..."

    Really? My son lost all language at about 18-19 months old; he would not respond to his name despite having normal hearing; he would run off and never look back, and he would stand and flap his hands and scream until I figured out what it was that he wanted. He didn't point, he didn't lead me by the hand, he just flapped and screamed. And today at age 14, he still does not have functional language and requires constant supervision, but he's a whiz at Googling movie trailers that he likes and watches them in multiple languages,which he may or he may not understand.

    Even a generation ago, my child would NOT have simply been labeled "difficult" or "quirky." I believe there is a true increase in the number of individuals who have autism spectrum disorders, not just better awareness. It's imperative that we find out why the numbers are increasing!

    Posted by Janet April 14, 10 12:26 AM
  1. has anyone thought about the effects of wireless internet and cell phones on autism?

    Posted by smartypants April 14, 10 02:08 AM
  1. what would be interesting is to do an epidemiological map that would overlay environmental features and industrial features ontop of a map showing social proximity discussed in this article. It would help to see if just knowing about a local child with autism leads to more awareness and increased diagnosis or whether there are other environmental factors involved.

    Posted by carol April 14, 10 10:55 AM
  1. Janet, you're right, a child with classic, severe autism would not have been labeled as "quirky". That was stated poorly in the article. But high-functioning autistic children and children with Aperger's very easily would have been called "quirky" and not received a diagnosis of autism like they would today.

    There is not good evidence that classic autism is increasing. We have expanded the diagnosis to include a spectrum of disorders. Studies that use today's criteria applied to medical records from 40+ years ago show an incidence of ASD that resembles what we are reporting today.

    Posted by Orange577 April 14, 10 12:43 PM
  1. Check out www.transcendresearch.org to find out more information abotu research studies investigating autism spectrum disorders!

    Posted by researchiscool April 14, 10 01:23 PM
  1. Dear Orange577, a story from May 2009 says:
    From 1987 to 2007, the number of people with autism receiving services at state-funded regional centers increased by nearly 1,200%, jumping from 2,701 to 34,656, according to a study the California Department of Developmental Services released this week, the San Jose Mercury News reports.
    The study focused on people with classic autism and generally excluded people with other autistic spectrum disorders, such as Asperger's syndrome and Rett's disorder.

    Posted by Janet April 14, 10 01:52 PM
  1. Here is a very different take on this study, and this is the take that I got from reading the study.

    Social Factors in Autism Diagnosis
    http://www.sciencebasedmedicine.org/?p=4726#more-4726

    Posted by Marjorie Kaplan April 14, 10 03:26 PM
  1. Janet,
    Thanks for mentioning the news story. Do you have links to the actual data? I have been unable to find it.

    The criteria for diagnosis of autism changed significantly from 1987 to 2007. The DSM revisions have greatly increased the inclusivity of the diagnosis. I would love to be able to review that data to see if that is accounted for.

    The studies that have used consistent criteria have not found an increase in autism over this time period.

    Posted by Orange577 April 14, 10 05:48 PM
  1. This article is a bit misleading in how it summarizes the Columbia study. The study is very clear in that the mechanism at play is specifically informational diffusion, i.e. parents learning about the disease. The explanations via toxins etc are specifically rejected by this study, as is the possibility of a vaccine link.

    Posted by PhD student April 18, 10 10:34 PM
 
15 comments so far...
  1. I think that should be 42 percent more likely to be diagnosed, for children within 250 meters, not a 42 percent chance?

    Regardless, a timely and interesting piece. I have a sibling with (rather severe) adult-diagnosed Asperger's, and it has certainly made my siblings and I look more carefully at signs in our own children.

    Posted by jsa April 12, 10 03:41 PM
  1. As a biostatistician, it should be "42 percent increased chance of being diagnosed as compared to children not living within 250 meters of a child with autism."

    Posted by akm April 13, 10 09:16 AM
  1. akm is correct. I suggest an immediate correction since many readers will not check the comments. But kudos for noting that MMR vaccine is not related to autism

    Posted by maus April 13, 10 10:36 AM
  1. Just a question - if these proximity numbers were reported in regards to a certain type of cancer, wouldn't we all be alarmed and looking at "cancer clusters"? Why is it different with ASD? I agree with the premise that parents who know a kid with ASD are more likely to notice the same symptoms in their own kids (that is certainly what helped me know that my 4 year old needed to be evaluated) but I would think there has to be more to it.

    Posted by PDD-NOS mom April 13, 10 11:31 AM
  1. Yes, akm, thank you -- it should be "42 percent increased chance." I've made the correction. Now... back to the discussion: Do you think that an increase in awareness of autistic symptoms could play a role in the increase in diagnoses in the US?

    Posted by Lylah M. Alphonse Author Profile Page April 13, 10 01:09 PM
  1. Its the vaccines.

    Posted by John April 13, 10 05:33 PM
  1. "...a generation ago, a child with autism would simply have been labeled "difficult" or "quirky" ..."

    Really? My son lost all language at about 18-19 months old; he would not respond to his name despite having normal hearing; he would run off and never look back, and he would stand and flap his hands and scream until I figured out what it was that he wanted. He didn't point, he didn't lead me by the hand, he just flapped and screamed. And today at age 14, he still does not have functional language and requires constant supervision, but he's a whiz at Googling movie trailers that he likes and watches them in multiple languages,which he may or he may not understand.

    Even a generation ago, my child would NOT have simply been labeled "difficult" or "quirky." I believe there is a true increase in the number of individuals who have autism spectrum disorders, not just better awareness. It's imperative that we find out why the numbers are increasing!

    Posted by Janet April 14, 10 12:26 AM
  1. has anyone thought about the effects of wireless internet and cell phones on autism?

    Posted by smartypants April 14, 10 02:08 AM
  1. what would be interesting is to do an epidemiological map that would overlay environmental features and industrial features ontop of a map showing social proximity discussed in this article. It would help to see if just knowing about a local child with autism leads to more awareness and increased diagnosis or whether there are other environmental factors involved.

    Posted by carol April 14, 10 10:55 AM
  1. Janet, you're right, a child with classic, severe autism would not have been labeled as "quirky". That was stated poorly in the article. But high-functioning autistic children and children with Aperger's very easily would have been called "quirky" and not received a diagnosis of autism like they would today.

    There is not good evidence that classic autism is increasing. We have expanded the diagnosis to include a spectrum of disorders. Studies that use today's criteria applied to medical records from 40+ years ago show an incidence of ASD that resembles what we are reporting today.

    Posted by Orange577 April 14, 10 12:43 PM
  1. Check out www.transcendresearch.org to find out more information abotu research studies investigating autism spectrum disorders!

    Posted by researchiscool April 14, 10 01:23 PM
  1. Dear Orange577, a story from May 2009 says:
    From 1987 to 2007, the number of people with autism receiving services at state-funded regional centers increased by nearly 1,200%, jumping from 2,701 to 34,656, according to a study the California Department of Developmental Services released this week, the San Jose Mercury News reports.
    The study focused on people with classic autism and generally excluded people with other autistic spectrum disorders, such as Asperger's syndrome and Rett's disorder.

    Posted by Janet April 14, 10 01:52 PM
  1. Here is a very different take on this study, and this is the take that I got from reading the study.

    Social Factors in Autism Diagnosis
    http://www.sciencebasedmedicine.org/?p=4726#more-4726

    Posted by Marjorie Kaplan April 14, 10 03:26 PM
  1. Janet,
    Thanks for mentioning the news story. Do you have links to the actual data? I have been unable to find it.

    The criteria for diagnosis of autism changed significantly from 1987 to 2007. The DSM revisions have greatly increased the inclusivity of the diagnosis. I would love to be able to review that data to see if that is accounted for.

    The studies that have used consistent criteria have not found an increase in autism over this time period.

    Posted by Orange577 April 14, 10 05:48 PM
  1. This article is a bit misleading in how it summarizes the Columbia study. The study is very clear in that the mechanism at play is specifically informational diffusion, i.e. parents learning about the disease. The explanations via toxins etc are specifically rejected by this study, as is the possibility of a vaccine link.

    Posted by PhD student April 18, 10 10:34 PM
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