THE CALIFORNIA NUMBERS
Ginger has an interesting post about the latest California numbers, and it seems like the downward trend continues. I say “seems” because the nature of the statistics kept by the California Department of Developmental Services limits their value, as is discussed by Ginger in her post and in the comments. A well-designed epidemiological study might shed more light on whether we’re seeing a real trend (although epidemiology is a poor indicator of causation). Unfortunately, we have yet to see a well-designed study in California or anywhere else.
What makes the California DDS statistics so interesting is that -- unlike most of the epidemiological studies we have seen in the past -- these numbers compare apples to apples on a quarter-to-quarter basis. So while the new report doesn’t provide any answers, it definitely raises the question of what may be causing the apparent trend.
While the rest of us shout out that the California numbers mean nothing (wrong) or that the numbers prove a drop in clinical cases of autism after the decrease in thimerosal’s use (equally wrong), perhaps someone can figure out a way to tell us what we really want to know.
What makes the California DDS statistics so interesting is that -- unlike most of the epidemiological studies we have seen in the past -- these numbers compare apples to apples on a quarter-to-quarter basis. So while the new report doesn’t provide any answers, it definitely raises the question of what may be causing the apparent trend.
While the rest of us shout out that the California numbers mean nothing (wrong) or that the numbers prove a drop in clinical cases of autism after the decrease in thimerosal’s use (equally wrong), perhaps someone can figure out a way to tell us what we really want to know.
posted by Wade Rankin at 1/13/2006 07:07:00 AM
6 Comments:
I think we still need not to lose sight of the kids who have autism and are growing every day older---just because the numbers of children diagnosed decline, we still need to keep pushing and fighting for those who will need services and therapy for their whole lives.
I am just glad Charlie was born in 1997 since our understanding of autism is not the 1960s psychogenic theories and the there are so many treatments. And hope.
One recent change for DDS services is the Family Cost Participation Program adopted in 2005. The regulations were promulgated in August of 2005, so the program is just getting underway. Under this program, families of kids aged 3-17 must submit financial information and will be required to pay for services from DDS at a level depending on income. All DDS services used to be free. This new program might have some effect on the numbers.
Anne brings up an example of why so many statistics such as these have limited value. The data is not being gathered with the intent to provide the information that we seek. It's being tracked by organzations (State of California in this case) to meet their own needs (most likely for planning, budgetary, and political purposes in this case). It doesn't make the data bad, it just limits it's application. We can't tell how many legislative and policy changes influenced the statistics over the time in which they were collected.
I think, now with more reading than before, that seems that several years ago the numbers of ASD people of all ages was seriously misquoted. In this sense, the lack of enough services and perhaps less attention to ASD treatment made that statistics were very badly influenced. In the last 25 years, with more attention, interest and research in ASD the progressive incorporation of ASD children to a lot of services provided by state- and probably other factors and I do not discard a REAL increase- made the numbers reported by educational staff to skyrocket. I think if, as before the numbers were irreal because they were too low now they are inexact because they are too high, "inflated" by other reasons that the real ASD numbers. So how do we know if we have an epidemics or not or a real increase/decrease based on educational numbers?
We know that Educational data have now epidemiological value. But also epidemiology uses data based on diagnosis, and the diagnosis has the several effects I have pointed before and others (kind of criteria, changes in the criteria). Considering the differences between state to state in the diagnosis and all the concomitant factors, including for example home schooled children, how do we know when the decrease/ increase can be assigned to one reason in particular or is the combination of several, some of them not related to the diagnosed children themselves?
The general perception is that the numbers of ASD children has increased in USA and around the world. But it is a perception based on our personal analysis of how common is now the diagnosis and how many people we know with a child diagnosed with a neurodevelopmental problem.
I wonder what is the real situation and how these variables can be quantified? More if the vaccine´s schedule and kind of vaccine -that changed over the years-are included in the analysis.
I will be glad to hear comments about, because I live outside USA.
María Luján
Very good comments by all. Anne, you raised yet another problem with these numbers that I had not considered. As I tried to say in the post, the limitations of these stats keep them from proving much, but the fact that they measure the same thing on a quarterly basis shows a trend. The problem is the trend may be utterly meaningless. The fact that we spend so much time talking about them underlines the fact that we really don't have any really good indicators to discuss.
Yes, Anne, this is where we are with the Reg Ctr. They asked us for detailed financial information, we provided it. Then they insisted on doing a complete financial audit of our personal finances (IRS-style) or they would not be able to offer my ASD child any more services. I guess we'll have to get an attorney, yet again, so we can perhaps once again get services. At this point, however, my child (who was counted before) is not counted now.
Kristina: The numbers in Calif. are _not_ truly declining. The Reg Ctrs are trying every trick in the book to drop clients and not accept any new ones. I know many parents who were told they'd need to submit to an audit, so they just dropped it and now those kids aren't counted. Also, I know many "new" parents here in Calif are getting put in voice mail hell with the Reg Ctr; having their intake appts cancelled over and over; not hearing back ever again from their Reg Ctr case managers, etc.
THESE numbers CANNOT be relied on for tallying actual ASD cases in the State of California.
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