O California!: What's going on with the autism rate in the Golden State?

Published May 07, 2009 @ 12:33AM PT

Greetings from California from http://www.legendsofamerica.com/postcards-pictures-of/can5-californiagreetings2.jpg
In my native state of California, the number of individuals on the autism spectrum receiving services from state regional centers has increased twelvefold in the past decade, according to a study released by the state's Department of Developmental Services and reported in yesterday's San Jose Mercury News. That is, the number of individuals with an autism spectrum diagnosis who have received services from the state of California has increased twelve times in the past decade. As the San Jose Mercury News notes:

The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates.

The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger's syndrome and Rett's Disorder.

But fasten your seatbelt. Because you know, many will overlook the fact that the "twelvefold increase" is about the number of individuals who have gotten an autism spectrum diagnosis and gotten services via the state. There are most likely more individuals on the autism spectrum in the state of California (I can think of quite a few, personally) who have not received such a diagnosis and who are not seeking services from the state.

Indeed, it can be said that there have always been individuals in California who are on the autism spectrum; not all of these individuals have received services from the state's regional centers and not all of them might wish, at the present moment, to be counted as "autistic." Further, it needs to be noted that the services that presently exist, and that people might wish to seek out for their family members, did not exist in the past. There are a lot more people seeking autism services now because those services exist.

(Just as, there were a lot of people in California prospecting for gold around 1849 because someone had found some.......but the gold was always, has always, been there.)

Nevertheless......expect to see blog posts with titles like "12-fold increase in autism in California in the past 10 years!!!!!!!!!!!!!!!!!!!!!!!!!!!!".

Consider some previous posts from when I was writing Autism Vox: How better diagnosis has contributed to people feeling that there is an 'epidemic' of autism.

And, the two hypotheses of the autism epidemic and diagnostic substitution.

And, diagnosing autism has itself evolved over time: Is autism now being over-diagnosed? misdiagnosed? or just better diagnosed??

And, is autism under-diagnosed in girls? (also consider posts by Elesia here on this topic).

Plus: Consider the analyses of the California data by Autism Diva at Left Brain/Right Brain and by Do' C at Autism Street, on the California's Invisible Autism Epidemic, as well as some posts about the prevalence of autism on Neurodiversity.

Just some things to keep in mind in case you see any of those "there's an epidemic of autism in California!!!!!!!!!!!!!!!!!!-type headlines.

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Comments (21)

I don't know.... ask Jenny Mcarthy maybe? She seems to have worked it out with her son.

Posted by Lorna Christensen on 05/07/2009 @ 07:03AM PT
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For another point of view read about the recent UC Davis study in which after a thorough review of data the study authors concluded that better diagnosis could only account for a minority of the increase in autism rates in California.

For a description of this study go the the National Institutes of Health NIEHS web site at http://www.niehs.nih.gov/news/newsletter/2009/february/autism-rates.cfm

To quote:

"A new analysis of data on autism performed by NIEHS grantees at the University of California Davis (UCD) undermines arguments that California’s dramatic 7- to 8-fold increase in autism cases may be largely due to changing diagnostic practices of physicians. The researchers, who are affiliated with the UCD Department of Public Health Sciences and the UCD Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute, found that including milder cases, performing earlier diagnosis and demographic factors can explain only a small part of the rise in the number of children with the disorder."

"For Hertz-Picciotto, the increase underscores the need for greater emphasis on investigating further the role of environmental causes of the disorder. 'Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than environmental ones,' she said. 'We need to even out the funding.'”

Dr. Irva Hertz-Picciotto, Ph.D., is an epidemiologist and Professor, Dept. of Public Health Sciences, School of Medicine, University of California, Davis Public Health Sciences. She received her BA in mathematics, MA in biostatistics, and PhD/MPH in epidemiology from the University of California, Berkeley. In 2002 she launched the CHARGE Study (Childhood Autism Risk from Genetics and the Environment), which is the largest epidemiologic study of confirmed cases of autism to date; more recently, Dr. Hertz-Picciotto initiated the MARBLES Study (Markers of Autism Risk in Babies – Learning Early Signs), a prospective investigation that follows women who have already delivered one child with autism beginning early or even before a subsequent pregnancy, to search for early markers that predict autism in the younger sibling.

Posted by Twyla Ramos on 05/07/2009 @ 08:51AM PT
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I'm keeping low......out here in California.

Posted by mcewen mcewen on 05/07/2009 @ 09:34AM PT
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Now you told everyrone! They'll be coming here for services. Actually I think that is happening already! Hence the boom.

Posted by Dana Commandatore on 05/07/2009 @ 10:45AM PT
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Already happened in my town in NJ where, as is known, the prevalence rate is the highest in the US per the 2007 CDC report---1 in 94.

Posted by Kristina Chew on 05/07/2009 @ 01:20PM PT
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According to the UC Davis press release at http://www.ucdmc.ucdavis.edu/newsroom/newsdetail.html?key=1861&svr=http://www.ucdmc.ucdavis.edu&table=published

"The methodology eliminated migration as a potential cause of the increase in the number of autism cases. It also revealed that no more than 56 percent of the estimated 600-to-700 percent increase, that is, less than one-tenth of the increased number of reported autism cases, could be attributed to the inclusion of milder cases of autism. Only 24 percent of the increase could be attributed to earlier age at diagnosis.
“'These are fairly small percentages compared to the size of the increase that we’ve seen in the state,' Hertz-Picciotto said.

"Hertz-Picciotto said that the study is a clarion call to researchers and policy makers who have focused attention and money on understanding the genetic components of autism. She said that the rise in cases of autism in California cannot be attributed to the state’s increasingly diverse population because the disorder affects ethnic groups at fairly similar rates."

Posted by Twyla Ramos on 05/07/2009 @ 04:06PM PT
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1200% increase in cases of classic autism, ie. autistic disorder. That category includes those with intellectual deficits and speech delays, the typically more seriously affected by autism spectrum disorder deficits. Most of these would have been the ones who were seeking services historically. With a 1200% increase you have to deny harder than that.

http://autisminnb.blogspot.com/2009/05/autism-rising-in-california-1200.html

Posted by Harold L Doherty on 05/07/2009 @ 04:44PM PT
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@Harold. I looked up the 1200% and it was shocking to see that number since I live in California. Thanks for this information. My son(not in the regional system) wasn't included in the study and he has a severe, rare form of autism.

"Thursday, May 07, 2009 Autism Rising in California: 1200% Increase In Autistic Disorder Cases 1987-2007 San Jose's Mercury News.com reports that a new California state study released this week shows a 12 fold or 1200% increase in classic autism, or Autistic Disorder, cases over a 20 year period. The state's general population grew by only 27% during that same period.

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 by the state Department of Developmental Services.

In addition, 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 L I on 05/07/2009 @ 06:27PM PT
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The feeling that there's an "epidemic of autism" is of interest to me in that it suggests how hard it is to understand things outside one's historical moment. We're very wound up in understanding autism from our current place in time, but we seem to struggle to see how a previous generation "saw" things very differently.

The Hertz-Picciotto study was covered here:

http://autism.change.org/blog/view/new_study_on_californias_rise_in_autism

Posted by Kristina Chew on 05/07/2009 @ 06:35PM PT
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The feeling that there's an "epidemic of autism" is of interest to me in that it suggests how hard it is to understand things outside one's historical moment. We're very wound up in understanding autism from our current place in time, but we seem to struggle to see how a previous generation "saw" things very differently.

The Hertz-Picciotto study was covered here:

http://autism.change.org/blog/view/new_study_on_californias_rise_in_autism

Posted by Kristina Chew on 05/07/2009 @ 06:35PM PT
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There's more than a "feeling" that there's an epidemic of autism.

Posted by Twyla Ramos on 05/07/2009 @ 08:27PM PT
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Yes, it is a belief, in every sense of the word.

Posted by Kristina Chew on 05/07/2009 @ 08:31PM PT
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To quote neurologist Dr. Jon Poling:

"For the million plus American families touched by autism, like mine, there is real urgency to find scientific answers to help loved ones and prevent future victims. Unfortunately, some doctors still fail to even accept the increasing autism rate as real, rather than their own better diagnosis.
"The collateral damage of 'better diagnosis,' the idea that we are simply better at detecting autism, is the abandonment of families coping with autism by the medical establishment, government and private insurance companies.

"Beyond the high emotional toll autism takes on a family, many have been financially ruined. Public school systems are drowning in the red ink of educating increasing numbers of special-needs students.

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. In the 2009 issue of Epidemiology, two authors analyzed 1990 through 2006 California Department of Developmental Services and U.S. Census data documenting an astronomical 700 to 800 percent rise in the disorder.

"These scientists concluded that only a smaller percentage of this staggering rise can be explained by means other than a true increase.

"Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities.

"We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda."

- From the article "Blinders Won’t Reduce Autism" at http://www.ajc.com/opinion/content/opinion/stories/2009/03/13/polinged_0313.html

Posted by Twyla Ramos on 05/07/2009 @ 08:44PM PT
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Here's another article on this twelvefold increase in two decades:
http://www.contracostatimes.com/california/ci_12310147?nclick_check=1

Posted by Twyla Ramos on 05/09/2009 @ 05:42PM PT
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Here's a quote from that Contra Costa Times article:

In a finding with important ramifications for the future, the study notes that within the next five years, more than 4,000 teenagers who have autism will reach adulthood. They will be added to the 6,000 adults already in the regional center system.

By 2018, the study estimates, the number of adults with autism will exceed 19,000. It is crucial, Rollens said, that the state develop the infrastructure to serve these families, despite the tight financial times.

Posted by Twyla Ramos on 05/09/2009 @ 05:45PM PT
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Thanks for the links; it's a good thing to be living at a time when we recognize autism and are able to provide (or to try to provide) the services and supports that are needed, rather than simply "writing off" those with disabilities.

Posted by Kristina Chew on 05/09/2009 @ 06:10PM PT
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Thanks Kristina for your thoughts on services and supports needed rather than 'writing off'. I like the way you said it.

Posted by L I on 05/12/2009 @ 12:28AM PT
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Silicon Valley residents are breeding with each other and spreading throughout the state. Duh.
(i'm about 1/3 joking)

Posted by Katie miller on 05/13/2009 @ 07:31AM PT
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@Katie. I like your comment. It's appropriate because there are software people in our family. One is working in Silicon Valley.

Posted by L I on 05/13/2009 @ 12:57PM PT
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Ahem, many of my relatives are in that line of business. (But _none_ of Jim's.)

Posted by Kristina Chew on 05/13/2009 @ 08:52PM PT
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Ahem, many of my relatives are in that line of business. (But _none_ of Jim's.)

Posted by Kristina Chew on 05/13/2009 @ 08:52PM PT
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.