Malibu and Compton: Compare and Contrast
So, ... Malibu, .... that's like where Barbie lives, right?And who, like, lives in Compton? Seems like Barbie never lived there. According to the data on wikipedia right now, about 56% are Latino or Hispanic and about 40% are African American (there can be some overlap as a person can be both). In contrast, Malibu has like 91% White people. Well, OK, so they're technically Tan people.
Race aside, the difference in socio-economic status between the folks who live in Malibu and the folks who live in Compton is pretty big, though there are good reasons to live in Compton and good reasons to start a business there apparently, and surely there are people who are very happy there and would prefer not to live in Malibu.
One difference between Compton and Malibu is that they are in different DDS (Department of Developmental Services) regions. They are served by different Regional Centers. Malibu is served by the Westside RC and Compton is served by the South Central LA RC. Los Angeles city is in the Lanterman RC.
What are the Regional Centers? Autism Diva always thought they were like school districts or something, directly answerable to the State government, but in actuality they are independent non-profit agencies that get their funding from the DDS. The Regional Centers contract with vendors to supply services like, Lovaas brand Applied Behavioral Analysis therapy, for instance, or horseback riding therapy, or for certain things like incontinence supplies that their clients might need.
The Regional Centers for some reason are more or less generously funded, or more or less able to deliver services, depending on where they are situated. It is known here in California, that if you live in, say, Malibu, that your kid is much more likely to get, well, sort of platinum plated services, like a few years of very expensive 40-hour-a week-ABA in your home for your kid, than if you live in, say, Red Bluff or Fresno. And while you might have a good shot at sending your kid to summer camp paid for by the regional center if you live in South Pasadena, the odds are about nil for that if you live in nearby Palmdale, or far off Eureka.
Why this is is not clear to Autism Diva. Do some regional centers get huge budgets and other get small budgets? Are some RC's just not good with budgeting their money? It would appear that that has been a problem with the RC that serves the Sacramento area, they had some kind of fiscal fiasco a few years ago and the director was booted out and replaced. Is it that the parents in some areas just demand--stomp their feet and threaten to hold their breath until they get favorite therapies paid for by their regional center? This seems likely. Get enough cranky ladies-who-lunch together and they can make quite a racket stomping in their Ferragamo boots. Actually, ladies like this get on the phone to their lawyer and sic the lawyer on whoever gets in their way. Of course, the truly wealthy don't bother, they just send the child to a private school in Switzerland or something.
At any rate, as the system stands there is this horrendous difference between regional centers as to what they provide for autistic kids. Maybe what they provide for, say, 40 year old Down syndrome clients is more uniform throughout the state.
But who knew that there would be a HUGE difference between the prevalence of autism between the geographical regions that belong each of the Regional Centers? Well, some of the folks at the MIND Institute have known this for a while, and of course the folks at the DDS who count the data on the clients, they have have known for a while. Rick Rollens must have known for a while. It's just been sort of a little secret apparently. Autism Diva has known for more than a year or so that "Southern California" is where the bulk of the growth of "autism" in the State has been coming from, but she didn't realize until recently that the Regional Centers themselves may have been influencing this discrepancy in autism distribution.
It's not all of "Southern California" that is having the autism explosion, it's really happening in certain cities around Los Angeles.
Now look at the numbers on the map. What you see are a rough estimate of the number of autistic kids born in the catchment areas of the various Regional Centers from 1995 to 2000, who were later enrolled in the DDS. So a kid at age 7 might be in Sacramento, but if he was born in the San Gabriel Pomona area that kid would be counted in the San Gabriel Pomona RC on this map. But, probably most autistic kids are still living in the same Regional Center area that they were born in, unless... maybe ... their moms and dads learned that by moving to another DDS region they could get more services.... but that sort of movement is controlled for on this map because it shows where the kids were born.The numbers represent about how many autistic kids of the 1995 to 2000 birth cohort--who are in the DDS system--there are per 10,000. The data are not very old, the numbers shown on this map have been made public previously, but apparently haven't shown up in any peer reviewed journals yet, and came out of the CHARGE study which is led by the UC Davis MIND Institute's, Irva Hertz-Picciotto. Throughout almost the entirety of California (which is a mighty large State) these sort of quasi-prevalence numbers for each Regional Center are close to 30 per 10,000. The average prevalence for the various RCs, to emphasize it, is very close to the prevalence in the Compton area, or the South Central LA Regional Center. So if they look at the map, Comptonites shouldn't feel too left out, because actually they are getting a higher percentage of their kids enrolled in the DDS than are the residents of a big swath surrounding Sacramento. Where Autism Diva lives, the prevalence this study found is 23 per 10,000. In the North Bay Regional Center which has a border a few miles from Autism Diva's home town... there are 30 per 10,000. Golden Gate Regional Center (San Francisco and neighboring cities) actually has one of the lower counts, at about 25 per 10,000, and the Silicon Valley area only has 32 per 10,000, or about the same as the Compton area, South Central LA.
So what do the folks from the CHARGE study say about the differences in seeming prevalence of autism between regions?
Comparisons between RCs must take into account numerous factors that will likely differ across regions (and may influence the incidence rates or prevalence proportions) including, but not limited to: sociodemographic characteristics of the population served, their access to and utilization of practitioners, the diagnostic practices within the catchment areas, staffing levels at the Regional Centers and their operationalization of DDS regulations, school district services for developmental disabilies, and environmental factors
So... sociedemographic characteristics... how likely is mom to be a lawyer, or to be dating or married to one, or have the wherewithal to hire one? How likely is mom to have heard of a "Regional Center"? Can mom shop around to get a diagnosis of "autism" for her PDD,nos kid? Will mom be more likely to threaten to sue the Regional Center if they say her kid is really PDD,nos and not autistic and so try to exclude him from services? Hmmm.
How likely are the parents in one area or another to seek out medical diagnoses for a kid who is (at least in their eyes) a little slow or a little odd? That's not always about money, it's a cultural thing, too.
Oh, and look, professionals in each region, and Regional Centers themselves can have a different ways that they operationalize the descriptions of autism in the DSM-IV. Isn't that interesting? Some doctors are more willing to give certain diagnoses than others. Maybe the developmentally different kids in Paradise are getting more Mental Retardation dx's while the same kids would be diagnosed autistic in Beverly Hills, Hillbillies notwithstanding.
The directors and staff of each Regional Center can operationalize the DDS's instructions differently, too? Interesting. Also, school districts will tend to take up more or less of the demands for services that they provide, some of which may be adequate so that parents don't go chasing after RC services, too.
So... why are there less than half, close to a third as many autistic kids in the South Central LA Region? It may be that some of their autistic kids are getting served under the MR label. It may be that the parents are actively rejecting efforts to get their autistic kids enrolled. It may be that that RC is not doing enough outreach, or maybe too much of their outreach has been in English, and not enough in other languages, particularly Spanish. It might be that the services offered by the South Central LA RC are so unimpressive that it doesn't seem like it's worth the parents' time to sign up for, much less fight for, what is offered there.
On the other hand, the South Central LA RC has autistic kids enrolled at about the same rate, or higher, than most of the rest of California.... so the problem is not that Compton's getting particularly left out prevalence wise, it's that something is very wrong, or very wrong by comparison, with what's happening in Malibu and South Pasadena. Kids are getting services in some areas whereas they would not be enrolled in the DDS at all in other areas. There are probably kids who are quite high functioning whose parents would essentially be laughed out of other Regional Centers, are getting comparatively cushy services like horseback riding therapy or 40 hours a week of ABA, even though the kids aren't "low functioning". Likely, there is some diagnostic shifting going on whereas some areas may have parents who refuse to have their child labeled "mentally retarded" but would go for the "autistic" label, for various reasons, one of them possibly being that the services are better for the kids with the "autistic" label.
The really scandalous thing is the idea that all of California is supposed to have such a high rate of "full syndrome" or "classic" autistic kids, of the same kind who were called "autistic" in 1990 enrolled in the regional centers, and counted by the DDS, which provides, if you buy the bunk dished out by some of the antivax/mercury hysterics, the "gold standard" of autism epidemiology. Well, if you buy that the DDS is only enrolling "full syndrome" "classic" autistics (though this is not true), then something really bizarre is going on in California because the real scary "epidemic" is only happening in certain areas in and around Los Angeles. And for some reason, there's this correlation between the number of autistics found in a DDS region with the number of stars their services would get from a Michelin guide, which stars are further significantly correlated with the likely average income and uppity-entitledness factor of the parents of the autistic kids in the Regional Centers.The Regional Centers are independent non-profit agencies with an openly political agenda. They have a "trade association" and the trade association has been paying out big money in recent years to their lobbyist to lobby for the passage of certain bills in the California legislature. Their lobbyist's name is Rick Rollens. It is in the interest of the Regional Centers to have Mr. Rollens yell, "epidemic of expensive autistic train wrecks" at every opportunity, and they don't particularly care if Mr. Rollens says what caused that epidemic, so long as it keeps the money rolling in.
Lets just think about this for a while, shall we?
[Edit: Also, Joseph has studied and documented the differences between the regional centers on his blog, Autism Natural Variation, here and here, for example. Some of this information about disparity and autism in California has been discussed in the last 2 years on various blogs.]
Autism Diva is still trying to take a break from blogging... but the Dr. Andy Wakefield ethical misconduct trial thing is going on in London, much to the distress of his fans here in California, and in Missouri, and there in the UK. The Guardian newspaper covers it here MMR scare doctor 'paid children for blood samples'
and here. The Telegraph has an article here MMR panic doctor 'was dishonest in research'.
The Mirror, Doc Paid Kids for Blood: He joked, "two fainted, one threw up" hearing told. Irish Examiner, MMR row doctor paid children for blood at son’s party. Canadian Press, Flawed research on autism-vaccine link lingers.
BBC: MMR scare doctor 'paid children' video link on that page, too.
[Edit: Ben Goldacre's Bad Science column: The MMR story that wasn't. He interviewed Carol Stott and Fiona Scott, Scott says the Observer never spoke with her at all though they refer to her as if they had. Stott thinks the MMR can cause autism. Maybe Stott needs a good work-up from a competent clinician, because her thinking is irrational to say the least.
Dr. Michael Fitzpatrick's The dark art of the MMR panic: As Andrew Wakefield appears at the GMC, spiked traces the efforts of a shabby scaremongering caravanserai to continue peddling a panic. In Fitzpatrick's article you can read a timeline of factually unrigorous but breathlessly clamourous fanfic descriptions of the oh so glamorous and ruggerous Andy. ]
Autism Diva
golden state
posted by Autism Diva at 11:16 PM
23 Comments:
Wow. I never would have guessed that the RCs had a lobbyist and that he would be someone like Rollens.
As to some of the discrepancy in numbers, I wonder if some of it is in part anyway, simply due to the one or two psychologists who are employed by each RC. I work with a lot of young RC clients, and so far, I have never seen one diagnosed by the RC with PDD-NOS. Once in a while they diagnose Autism, generally appropriately in my opinion. But if it's not a full case with all criteria met on the DSM-IV, they're not diagnosing anything. And there's a lot of parents who are not going to question that--either because that's what they want to believe, or because they just aren't sophisticated enough in the world of diagnoses and lawyers and so forth to fight it.
I have written some posts about differences between the regional centers.
For example, Windham et al. did a study where they found increased risk due to environmental pollutants. I argued, using RC data, that such a correlation can be explained otherwise. She didn't believe at first that her methodology allowed for such a confound.
Something interesting is that the prevalence of MR does not seem to vary widely between regional centers. But if you compare autism between the Centray Valley RC and the Westside RC, the difference is a factor of 5 (or 500%!! as Brad Handley would say).
I'm convinced that increasing recognition of autism in the population with MR (misclassification as MR, if you will) plays a key role in the differences. I wrote an an analysis where I test the hypothesis by determining what the numbers would be like if RCs had the same level of recognition of autism in the population with MR.
This post raises a couple of excellent points. First, there are significant disparities in health care delivery across races, cultures, ethnicities (see "Mental Health: Culture, Race, and Ethnicity. A Supplement to 'Mental Health: A Report of the Surgeon General'" (2002, HHS, Rockville, MD.). Second, accurate prevalence rates cannot be ascertained by records of enrollment in service or health care delivery.
I admire the your research. I'm an SLP in Texas, and I haven't seen a breakdown of statewide diagnoses, but I am familiar with some rough statistics in the school district where I work (which is fairly small -1 high school, high minority pop., mostly low SES) and silmilar sized ones nearby. There are some remarkable discrepancies and interesting correlations. I'm at home on summer vacation so I don't have exact numbers at my fingertips, but one silmilarly sized distrcit nearby, which is considered elite ( many, many wealthy families, low minority enrollment, lots of national merit scholars and football championships) has ASD diagnosis rate of about 3 times what we have. Last fall when my district was floating around 40-45 (my memory is fuzzy), this other district was at 128 students getting Autism services. As it happens, that district is also home to a private, nonprofit, autism clinic with some internationally known experts, one of whom seems to be in England at the moment.
Your description of services provided and the political clout of the regional centers really peaked my interest. Each state has it's own peculiarities regarding the politics of diagnosis, and in Texas, some of these are:
-districts will not accept an outside (read: medical) diagnosis but must do their own evals
-under "educational" diagnosis all Autism Spectrum Disorders fall under the category/special education code of "Autism"
-under "medical" diagnosis the term "Autism" only denotes the most severe end of the spectrum.
I could go on for awhile about how this quirk of terminology leads to confusion at meetings with general education personnel and families who are not hip to the BS, and how this confusion can be manipulated by disingenuous participants who want things to a certain way. In terms of epidemiology, though, what it means is that by looking at the basic numbers that are maintained by the state, we don't know what we have. That special ed category "Autism" tells you about functional skills. You could dig into some districts data to get information on how many kids get certain types of sevices, but you have to dig and districts are really variable both in what they actually do and the terminology they use to decribe that. Then there are the questions about correlations between diagnosis and SES/minority status ( read: Black kids get MR dx, white kids get ASD), as well as parent's educational level, the frequency of agreement between medical & educational dx, and of course what is the impact on local epidemiological figures if an autism expert moves into your neighborhood?
Correction: I meant to say: Special ed code of "Autism" tells you nothing about the student's functional level.
"Malibu has like 91% White people. Well, OK, so they're technically Tan people."
Damn you're funny. I love that line.
Rick Rollens role ('scuse the alliteration) in this is a bit disturbing. It seems to me (as someone who is not familiar with this system at all) that he is in effect being paid to promote the idea of an epidemic in order to sell services to people who quite possibly don't need them at the expense of people who actually do.
Is that a fair summation or have I got the wrong end of the stick?
(I deleted above for spelling error)
Kev,
To Autism Diva, it seems like the biggest scam might be that there were these regional centers that are all independent businesses (nonprofits still make good chunks of money for their directors and some of their staff) and they want to keep money coming in. The money is coming from the legislature. So they can't get a bigger client base or provide more services (all of which would increase the amount of cash flowing through them) without more and more money from the legislature. So they've created this trade agency to represent them as a group, the trade agency is called ARCA. ARCA started paying a lobbying firm called KAHL/POWNALL ADVOCATES in 1997 (pre-epidemic?) Rollens worked for KAHL/POWNALL ADVOCATES.
In 2001 Rollens is on his own as his own lobbying firm, and he's hired by ARCA. Since then ARCA has been paying Rollens ever increasing amounts of money to lobby for them.
SO, in 1997 the regional centers are only serving a percentage of the autistic clients they should be serving, and they are serving some autistic clients as "mentally retarded". The DSM-IV changes start to kick in and more and more people with less severe kids are told their kid is autistic, and the parents aren't horrifically offended by this (as they would have been in 1960, for instance, when it mean bad parenting). A bunch of autistics show up kind of suddenly in the regional centers in 1998ish and Bernie Rimland screams "epidemic"!!!!
Lenny Schafer has the Lenny Letter around then, and he starts to repeat it. It's an epidemic, it's an epidemic! See, Rimland was already suspicious of mainstream medicine and Lenny was a long time antivaxer so they hit it off well.
So, Rollens yells, "epidemic" and... it hits the news... and more people look around to see if there are autistic kids in their neighborhood... they find some and enroll them in the RCs... and that proves that the epidemic is continuing... so Rollens yells, 'EPIDEMIC' we need an Institute! And he goes and yells to his old friends in the legislature (because he was secretary to the legislature for 25 years...) and they all get scared and give UCD the money to build the MIND Institute...
all of this makes the news and more kids are taken to the RCs... which only proves that there's an "epidemic" so Rollens yells, "EPIDEMIC".... lather, rinse, repeat,... as they say.
AND with each quarter he can go lobby the legislature telling them that this or that bill should be passed because of the non-stop epidemic! And with each increase of funding to the RC's they have more money to give to ARCA which has more money to pay Rollens...
lather, rinse, repeat
And the ABA therapists love him because now they have lots of customers to charge heinous amounts of money to cure kids IF ONLY THEY INTERVENTIONS ARE INTENSIVE ENOUGH AND EARLY ENOUGH
So we have a big push to find more autistic kids earlier, which tends to misidentify large numbers of kids who all get services to keep them from becoming autistic (when a bunch of them never were going to be autistic)... but this reinforces the idea of the EPIDEMIC! and ... lather, rinse, repeat.
And no one cares if Rollens is saying that it's vaccines that are causing the epidemic, because they just want the kids enrolled in the RCs....
there's more, but that seems to be the theme around Rollens' involvement. Yelling "epidemic" seems to be putting money in his pocket as well as promoting his view about vaccines.
Sorry, but looking at that map, all I can see is Elvis' profile.
So we have a big push to find more autistic kids earlier, which tends to misidentify large numbers of kids who all get services to keep them from becoming autistic (when a bunch of them never were going to be autistic)
Most parents emphatically say that without therapy, their kids would have been much worse off. I call it the "Boy Who Loved Windows" effect.
What scares me more is the growing number of mothers on support boards who say they are treating their child as if they were autistic "just in case."
They are ignoring professionals and shelling out dollars to private therapists without any sort of diagnosis. Babies are getting ABA services and parents are drilling them all day long on feeding dolls, etc.
I am all for parent interaction, but no one knows what the long-term effects of this might be, especially in terms of how the parent views the child (damaged) and how the child views himself (damaged).
In your post you said;
"And while you might have a good shot at sending your kid to summer camp paid for by the regional center if you live in South Pasadena, the odds are about nil for that if you live in nearby Palmdale, or far off Eureka."
I believe for the most part the local school district that the child is attending ends up footing the bill. Regional centers do nothing but shake the tree for the most part.
Great subject though.
Regional Center is quite a tiger by the tail topic in and of itself. I have asked my wife (special education teacher 25+ years) over the years, "Who is regional center?, who staffs regional centers, who does the evaluations at the regional centers, what are thier qualifications?
My wife has often been in conflict with RC on IEP's (Antelope Valley area). Why are Regional centers viewed as some sort of end all in developmental diagnosis.
Heck thier are at least 5 special education credentials required within the teaching field identified by the state LD, Mild moderate, moderate severe, to name a few off the top of my head.
When parents are in doubt about an IEP my wife often says "I hope that I am wrong, but if you don't believe me I recommend that you send the child to UCLA for a comprehensive evaluation."
Speechgrrl is right on target as well with the pecularities affecting diagnosis within school districts in different areas, its a real mixed bag of how things are done even with district geographicall next to each other. Of course one should never rule out the idiot admninistrator factor.
Keep up the good work, Your post on Southern Cal Regional Centers raises some very serious issues about integrity of diagnosis issues.
Another point about Regional Centers (at least here in the Antelope Valley), my wife has had roughly a 10% positive experience with RC advocates. In other words, one was helpful for the parents (he spoke Spanish) while the other 9 experiences were generally like meeting someone who was just hired and didn't know much of anything about SpEd. My wife had to supply one with a compendium of terms so that she knew what my wife was talking about.
Basically RC puts the pressure on the schools to diagnose or label seems to be the correct term used (schools do not diagnose). Which ever way you slice it, it ultimately is used as a diagnosis.
Bottom line, most of the RC employees who act as advocates to the parents are not really experts or trained technicians as far as I can tell. It seems they basically take the data provided by the schools within each school district and no one knows what is done with it.
It is a very good point that autism is not further defined by most school district paperwork. It would be a major step to merely say Mild, Moderate, severe. After that it is then a matter of diagnostic integrity of the evaluator (in this case the SpEd teacher) Many times it is simply a box identified as "Autistic like".
I would go so far as to say for the most part that many newer or inexperienced staff at K-12 schools (psych's, teachers, nurses)are reluctant to specifically identify the disability.
Most children within my wife’s district are labeled merely "speech and language" at the kindergarten level. This is usually because the level of expertise in the pre-school and kindergarten special day class level is minimal and they merely check the box and send the child on to 1st thru 3rd grade special day class. Couple this with the fact that many times most schools do not have a lot of experienced SpEd teacher populations. Many do not know how to identify the difference between Asperger's syndrome, autism and last but not least of all the evermore prevailant "Drug baby" symptoms.
Continue more blogging on childhood disabilities diagnosis and the inconsistant diagnostic "system"!!
33 in Compton and in the 80's in Malibu?
Frankly over the years of working in LA city and in Chicago she has had very few black kids that were autistic. ER, MR, drug babies, learning disabled, but autistic? Very few. After over 28 years in Sp Ed she can count less than 5 African American kids that were truly autistic - in her assesement.
Of all the caucasion kids, there was usually some sort of family history of some sort or another that was notable.
This is not to be considered the definitive account of a researcher's statistical study group by any means, but the long term experience of a trained Special Education professional.
Time to start cranking up the old swear on a bible family medical history questionaire?
Thank you for your comments, Uncle Dave.
There's never been shown a difference in autism between ethnic groups if one controls for access to medical care.
Autism Diva picked out Compton, but the region that has 33 per 10,000 is all of South Central LA RC. Presumably, this is about 45% Hispanic 45% African American and 10% Something else. Or maybe it's higher towards Hispanic/Latino, or higher towards Af. Am., but it's not a largely Black area, from what Autism Diva has read, not now... but we are talking about kids born in 1995 to 2000.
What is most interesting is that the percentage of identified autistic clients (most of whom are children) in RCs varies schockingly from North to South in California. The percentage of CP clients (kids and adults) is stable North to South. All the autistic clients together make up about 24% or something like that of DDS clients, but in some RC's it's much lower and in some it's much higher, depending on how close they are to the center of Los Angeles.
The rates of autism by where the kids were born are in no way correlated to any obvious pollutant exposure, as you can see that there's probably more toxic stuff laying around in Compton, than there is in Beverley Hills,... probably.
And in the Bay Area, the different areas that get either the least OR the most mercury air pollution have the LEAST autism. The areas that get the middle amount of mercury pollution have the most autism, but the prevalence for autism is still something around 28 per 10,000 even then.... because the Bay Area doesn't have the numbers like LA does (except for South Central, which has a more typical California prevalence rate.)
In other words there's no correlation between mercury exposure from air pollution and autism prevelance as measured by the DDS clients, where the kids were born.
Interesting.
"There's never been shown a difference in autism between ethnic groups if one controls for access to medical care."
I'm not sure what is meant by controlling for access to medical care and incidence of autism? Autism is typically identified by school districts that are required to test and provide the data.
Second;
Her experience has been that prior to 1995 she saw little autism at all in this area (Lancaster).
Then onezy twosy they begin to start appearing in this specific area (expected with an increase in population ??). Basically Lancaster has seen quite a population explosion, many moving from low socio-economic areas of LA to Lancaster and Palmdale (more section 8 recipients). Of those cases, her classroom has seen quite a rise in black and hispanic percentage as well. More black and hispanic in classes than white. Of this very tiny sampling group which may not be significant, she has seen mostly white autistic cases with very little to no black and hispanic autistic incidence.
Another population variable to consider;
Perhaps many of the numbers being lower in LA reflects movement of the population. Large numbers of families in LA are moving out here to Lancaster and Palmdale and that could be accounting for lower numbers there now and higher numbers appearing here, or even in outlying areas (baring the ubber wealthy zones).
West Lancaster was predominately a white population. Since 1995 or so the makeup of the west side has changed to Black and Hispanic populations. Thats quite a change in just a few years with many coming from your 33 LA area.
This may all be just a lot of dart throwing I will admit but one thing I will attest to; LA population is now populating the Antelope Valley area (Palmdale/Lancaster). Lower autism numbers in LA could just be a shift in movement from there to here.
Don't know why there are higher autistic numbers down here than up there though. Thats interesting
Hi Ed,
School diagnoses are spotty. Lots of schools up here seem to want to dx black kids with autism as having "conduct disorder" or attachment disorder, basically as having a bad mother.
Autism Diva knows of two black moms here who were told by Davis and Vallejo school districts that they were basically to blame for their kid's weird behavior, one got the attachment disorder for her kid through the school district. The girl had some kind of genetic or congenital disorder, you could see it on her face, but the school district convinced the mom that it was her fault, basically. The girl certain would have fit into autism easily.
Both of the moms were NICE women, and VERY GOOD moms.
At any rate, no one has ever found a correlation between race/ethnicity and autism ... if there is one, no one has found it.
This one included data on ethnicity, but only found a correlation with moms' age.
--------------------
Maternal and paternal age and risk of autism spectrum disorders.
Croen LA, Najjar DV, Fireman B, Grether JK.
Division of Research, Kaiser Permanente Medical Care Program, Oakland, CA 94612, USA. Lisa.A.Croen@kp.org
OBJECTIVE: To explore the association between maternal and paternal age and risk of autism spectrum disorders (ASDs) in offspring. DESIGN: Historical birth cohort study. SETTING: Kaiser Permanente (KP) in Northern California. PARTICIPANTS: All singleton children born at KP from January 1, 1995, to December 31, 1999, were included in the study. We identified 593 children who had ASD diagnoses (International Classification of Diseases, Ninth Revision, Clinical Modification, code 299.0 or 299.8) recorded 2 or more times in KP outpatient databases before May 2005. These children were compared with all 132,251 remaining singleton KP births. Main Exposures Maternal and paternal age at birth of offspring. MAIN OUTCOME MEASURES: Relative risks (RRs) estimated from proportional hazards regression models. Risk of ASDs evaluated in relation to maternal and paternal age, adjusted for each other and for the sex, birth date, and birth order of the child, maternal and paternal educational level, and maternal and paternal race/ethnicity. RESULTS: Risk of ASDs increased significantly with each 10-year increase in maternal age (adjusted RR, 1.31; 95% confidence interval [CI], 1.07-1.62) and paternal age (RR, 1.28; 95% CI, 1.09-1.51). Adjusted RRs for both maternal and paternal age were elevated for children with autistic disorder (maternal age: RR, 1.18; 95% CI, 0.87-1.60; paternal age: RR, 1.34; 95% CI, 1.06-1.69) and children with Asperger disorder or pervasive developmental disorder not otherwise specified (maternal age: RR, 1.45; 95% CI, 1.09-1.93; paternal age: RR, 1.24; 95% CI, 0.99-1.55). Associations with parental age were somewhat stronger for girls than for boys, although sex differences were not statistically significant. CONCLUSION: Advanced maternal and paternal ages are independently associated with ASD risk.
--------
MWR Surveill Summ. 2007 Feb 9;56(1):1-11.Click here to read Links
Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, six sites, United States, 2000.
-------
The CDC's phone survey found fewer autistic kids among the Hispanic households but felt that there was evidence of differential access or likelihood to get the proper dx or something. They didn't seem to think that white kids really were more likely to be autistic.
NOTE!
Autism Diva said;
"Davis and Vallejo school districts that they were basically to blame for their kid's weird behavior, one got the attachment disorder for her kid through the school district. The girl had some kind of genetic or congenital disorder, you could see it on her face, but the school district convinced the mom that it was her fault, basically. The girl certain would have fit into autism easily."
Lets assume you are correct in this case. It merely makes what I am saying (maybe not very well) all that more poinant.
When looking at statistics like you posted and talking about individual cases it leads to even more confusion (my fault on that as well). This blog or most any other does not allow enough room or time to adequately address the singular issue of school district assesement and statistics (of which virtually all your data is derived from, if it came from RC's)
Your individual case either assumes a racial bias, poorly trained staff, or both. I try not to adress individual cases because it can turn into a week long discussion raising even more issues. I try confine my observations to what I know to be accurate assesements over a 25 year period of professional observation. Not inaccurate ones.
The is not enough room here as well to address the FACTUAL data gathered in this local observation over the years. However I would say this based on what I have observed;
1. Typically she sees more whites and asians with Autism in a population primarily composed of more Blacks and Hispanic. (please do not assume racial bias in this observation it may be merely a regional quirk, maybe not)
2. Often there is some sort of family history of disorder in true autistic cases.
3. Sometimes the father is of advanced age in the true autistic cases.
Accurate Student assesement is affected by many groups within and outside the IEP (Individual Education Plan) teams. Parents, nurses, teachers, psych's, Speech therapists, Regional center, and last but cetainly not least the often times politcally detached and unconcerned heavy hand of school administrations.
Student assesement by individual schools and districts and correlating ACCURATE rates likely cannot be derived from much of the data presented.
This is an extremely difficult topic to adequately address due to many factors;
1. Most IEP forms to not allow for detailed assesement (that is sometimes left to the strongest personality in the IEP team).
2. What individual Regional centers do with the assesments or IEP's supplied almost entirely by the schools is a guess at best.
3. What services a child recieves is a complex issue of administrative additude and philosophy, parents seeking legal representation from the start, a teachers willingness to take on administrative pressure, etc etc.
4. Many schools in CA. are inadequately funded to adress the growing numbers of special education populations. Nevermind autism, they are required to address all disorders. Whether some of the other disorders get lumped in with autism (PDD, etc.) is anybodies guess as well.
These observations are based on individual field work (not global statistical data gathering). The observations I present are intended as a unofficial yet unbiased PRACTICAL evaluation of the Special Education system and the student populations experienced in a very specific LA and northern LA county area.
"Lots of schools up here seem to want to dx black kids with autism as having "conduct disorder" or attachment disorder, basically as having a bad mother."
Thats quite a statement. Your gonna have to come up with more than two black moms in your field study for that to stick. Your implying racial bias is affecting numbers in your area which implies that my observations are merely poor assesements as well? I certainly hope that that is not your implication here.
This is turning into a forum, which may be a good thing.
Maternal age for me: 37 for ASD son, 40 for NT son. Now, there may be an explainable racial difference here. Latinos, especially, and blacks are more likely to have children at a younger age than whites. This could reduce the age effect on ASD numbers. Also, ASD is almost certainly at least partially genetic. Why could it not occur more commonly in whites, especially certain ethnicities of whites?
That could start a huge argument there, but I do agree that the privatization and location of these RCs could definitely affect how the children are diagnosed and treated.
Because of my age, and thanks to health insurance, I was able to get good pre-natal care and had amniocentesis with both pregnancies. This would almost certainly have ruled out future diagnoses of several conditions, if they had appeared with my children.
I have two children, both in GATE, both doing well, but an older son who is not as social or socially adept, tends to fixate, stresses easily, gets absorbed, overreacts, needs a schedule, needs space and quiet, has varying degrees of poor motor coordination, has difficulty working or moving outside his comfort zone, and has extreme difficulty letting go of the known (including getting rid of old clothes). If I were not white, and had not stumbled across articles on ASD, it's very probable that my older son could have been improperly diagnosed with a behavioral condition. He was still not given the proper assistance from Special Education, but I live in a poorer section of town, with a high first-generation Latino population. I've since removed him from SD.
There are so many things we don't know; and we probably know more than 99.99% of the general population, including those persons who are supposed to have the special skills to deal with these conditions. Coming to this blog and the comments helps me keep up with current studies and developing knowledge on ASD, and it reminds me that there are many other people, often facing much greater difficulties, who are working and caring for their children, and helping them to develop skills to deal with this world.
Thank you for this site.
persephone said;
"Now, there may be an explainable racial difference here. Latinos, especially, and blacks are more likely to have children at a younger age than whites. This could reduce the age effect on ASD numbers. Also, ASD is almost certainly at least partially genetic. Why could it not occur more commonly in whites, especially certain ethnicities of whites?"
There ya go...
Uncle Dave, Autism Diva doesn't know how she ended up writing "Ed" in the last response instead of Uncle Dave... anyway,
Racism is alive and well in Davis, and probably in most of California. School districts pull all kinds of tricks to get parents not to demand too much (or any) help from them.
Autism Diva only knows two black moms who have autistic kids, but then Davis is a very white town and there aren't too many black moms here period.
Autism Diva doesn't have data on how many black or any other minority kids there are in programs as "conduct disordered" or "attachment disoredered". Autism Diva has no idea of how such things are done where your wife works.
It's possible she's just in an unusual spot, and it's possible there is some real discrepancy between ethnicities and autism, it's just that no one has documented it up until now. From what is known about genes, there's no reason to think it's a mainly white disorder. Hispanic women do seem to start having kids younger, but they also keep having children longer, so there probably would be as many Hispanic older moms as white older moms, but the white older moms would probably have fewer kids. Autism Diva doesn't know how that works out with the average African American woman, or Asian woman or Native American woman...
Autism Diva has read that Hispanic families tend to deny that there is a problem since labeling a child as having autism or learning disabled would make the child unmarriageable for sure later on. There's a tendency in some communities to just not worry about differences in kids, they just deal with the differences that many Anglo parents would freak about and demand a medical explanation for, and seek a treatment for.
Some ethnic people just have no faith in the medical system or the gov't system so they don't seek out help from that system... and then a few ethnic people came here illegally and so can't run to the gov't for help for everything.
DDS data and school district data is perfectly lousy for epidemiology it's not accurate by a long shot. This is not news, but it's Rick Rollens and gang who keep insisting that the DDS data is the "gold standard" of autism epidemiology in the states. It's a total lie, but there you go they keep putting it out there into newspapers, etc.
The DDS is getting money every time Rick Rollens opens his mouth, essentially, so they aren't in a big hurry to shut him up about an "epidemic" of autism that gets them money.
"Autism Diva has read that Hispanic families tend to deny that there is a problem since labeling a child as having autism or learning disabled would make the child unmarriageable for sure later on. There's a tendency in some communities to just not worry about differences in kids, they just deal with the differences that many Anglo parents would freak about and demand a medical explanation for, and seek a treatment for."
That is a very valid statement for many hispanic families. This is something that I have noticed second hand (spouse's real world experiences).
I am in full agreement, the data really sucks. There are to many alterior issues surrounding the interpretation and ultimately the integrity of the data to start with.
There is not enough experienced SpEd teachers available to administer to the system in California (note constant reference to Math, science and SpEd shortages). Most new SpEd teachers last only a year or two before they drop out due to excessive paperwork, oversized classes, and stress issues. Many regular education teachers "try it out" for the slight increase in pay only to find out its not what they thought. Uncle Dave's wife is a rare breed at over 25 years (it wasn't as bad then as it is now).
These facts can obviously can lead to less than stellar IEP evaluations of children. However it still doesn't appear to be all that important to people, based on actions speaking loader than words. People seem more dazzled by poisoning theories and elixurs than real research.
This is to important of an issue to rely on underfunded public schools as the primary data source. The Universities need to step up and get in the gaddam ballgame. I have seen little in the area of university field studies conducted in association with local schools. That would be a start at better understanding the problem.
Autism prevalence by race/ethnicity?
As AD notes, Croen's team says no. In addition to the paper published, they had a poster at IMFAR saying it too.
Also,
Yeargin-Allsopp M, Rice C, Karapurkar T, Doernberg N, Boyle C, Murphy C (2003). Prevalence of Autism in a US Metropolitan Area . JAMA 289, pp 49-55
"that the prevalence of autism did not vary by race, even within race and sex subgroups"
In a CDC report--
Schieve LA, Rice C, Boyle C. 2006. Parental report of diagnosed autism in children aged 4–17 years—United States, 2003–2004. MMWR
Morb Mortal Wkly Rep 55:481–486.
It is noted that
"Prevalence estimates in the two studies were similar across age, sex, and racial/ethnic populations."
Note in addition, no AGE differences. Again, AGE is not a factor in the 14-17 age group. Why, oh, why does the DDS have such a disparity by age (like a factor of 2 between the peak and age 17)? Why isn't Mr. Rollens asking for a search for these older kids before they leave school and we miss our chances to really reach out and start helping them?
Darnit--that would make it more difficult to attack vaccines, wouldn't it?
Matt
"Again, AGE is not a factor in the 14-17 age group"
should read
...4-17 age group...
Matt
Links to this post:
Create a Link
<< Home