Mind Institute: California's Autism Increase Not Due To Better Counting, Diagnosis

Researchers from Sacramento's U.C. Davis MIND Institute have mined extensive Census, Department of Developmental Services data, and concluded that our state's autism increase has only partially resulted from changes in diagnosis, migration, etc. In their opinion, autism researchers need to give environmental toxins and microbes the scrutiny currently they currently afford to genetic research:

...[Researcher] Hertz-Picciotto said that many researchers, state officials and advocacy organizations have viewed the rise in autism's incidence in California with skepticism.

The incidence of autism by age six in California has increased from fewer than nine in 10,000 for children born in 1990 to more than 44 in 10,000 for children born in 2000. Some have argued that this change could have been due to migration into California of families with autistic children, inclusion of children with milder forms of autism in the counting and earlier ages of diagnosis as consequences of improved surveillance or greater awareness.

Hertz-Picciotto and her co-author, Lora Delwiche of the UC Davis Department of Public Health Sciences, initiated the study to address these beliefs, analyzing data collected by the state of California Department of Developmental Services (DDS) from 1990 to 2006, as well as the United States Census Bureau and state of California Department of Public Health Office of Vital Records, which compiles and maintains birth statistics.

Hertz-Picciotto and Delwiche correlated the number of cases of autism reported between 1990 and 2006 with birth records and excluded children not born in California. They used Census Bureau data to calculate the rate of incidence in the population over time and examined the age at diagnosis of all children ages two to 10 years old.

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...
Contrast this excerpt with the letter below, written by a veteran special education professional from a midwestern state, who opines that the autism rate has not in fact increased -- but rather that spectrum diagnoses have been given to children who would previously have been labeled mentally retarded/disabled, quirky, eccentric, or mentally ill:
I am a lurker and Special Education Teacher. I read your blog and several others' who have kids with autism. I've learned so much from doing this. To me it's a chance to be an invited mouse in the corner for educational purposes. I also teach kids on the severe side at the high school level in a large town/small city in the midwest. Some have autism, some do not.

In my opinion -- and I do not have any data to back this up, just twenty-eight years teaching and living in our district -- the incidence of autism has not gone up. I think more kids are diagnosed. I know adults in our community who have many autistic-like behaviors but never had the official medical diagnosis, and were labeled mentally disabled at school.

I also think some higher functioning kids dropped out of school at a very young age because the social issues were just too much. They usually live with their families forever and were considered the really different, quirky kids when they were at school. They were not supported socially at school. I think this still happens, but not quite so often. I also wonder if some were diagnosed mentally ill and were served in the state mental health system.

I live in a state where kids are not labeled by a specific disability at school. It has been this way for about twelve years. This system has its advantages and disadvantages, my point is that there is really no incentive (that isn't the word I want to use but is the best I can come up with right now) for parents to seek an autism diagnosis. I have kids at school now that have autistic-like behaviors that do not have an official diagnosis. The idea is that any disabled child will recieve support/services based on their needs to be sucessful at school. Our state and in particular our school system has excellent early childhood services available for every disabled child.

Also, I don't think families in the midwest pursue private services for education and therapies paid for out-of-pocket or by insurance like they do on the west or east coasts. Families are more likely to rely on public schools and extended families for most if not all their services. Our state social service system can also provide some respite and limited in-home services for a child with a "significant developmental disorder". That is a generic diagnosis for any disability that affects development. Really it's all a word game.

I do not think that there are any private schools that serve kids with autism in our state. In fact there are very few private schools for anybody. Often districts will bus kids to special public schools in other districts or larger public districts and very rarely pay for children to attend an out-of-state residential school. Is this a cultural thing? I think so but I've never really thought about it. Anyway if you don't have to justify costs to an insurance company why pursue a diagnosis?

Now, there are reasons to have an official diagnosis when kids transition into adult services in our state. Independent living services in particular are better or maybe just different for individuals with an autism diagnosis. Adult work and advanced education options might also be better for higher functioning adults who are diagnosed with autism.
Regardless, I can only be grateful for articles that raise awareness of the size and needs of the autistic population, and influence the legislators-that-be to provide more funding for Leelo and his peers.

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1 comment:

  1. My pal Joseph wrote this analytical post on the MIND study, Hertz-Picciotto 2009. Your readers may find it interesting.


Respectful disagreement encouraged.