CDDS and full syndrome arseholes

14 Jul

Every god-damn quarter, without fail. Every single one. The CDDS data gets released – Rick Rollens releases his usual ‘full syndrome’ crapola and tells us how autism is still skyrocketing and does his best Chicken Little impression and David Kirby chews at the edges of the data to try and find something that will support the idea that thiomersal plays any kind of role in autism.

Its getting really, really old.

Please let me say it to you one more time.

CDDS is not good source data for epidemiology. They say so themselves.

When CDDS refer to ‘full syndrome autism’ they are not, repeat, not referring to classical autism. See this form here? CDDS use it to record autism. It was designed in the 1970’s. The version in use today was last updated in 1986. Don’t believe me? Ask them.

Item 23 is where the term ‘full syndrome’ is used. This term is today utterly without meaning. It is the only place to record autism at all.

If we trun to this document and go to page 71 we can see the section dealing with autism. In terms of _having_ autism, a person either can, can’t or have autistic-like symptoms associated with mental retardation. Its not until page 77 that we get to any kind of recording of degree of severity. *Note that this has no bearing on whether a person _has_ autism* . That is already indicated.

Here is what CDDS passed on to me. I promised not to attribute this quote so I won’t but if anyone wants to double check then an email to CDDS would back me up:

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called “Autism.” But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

You might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers–for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth—are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

I really don’t know how much clearer this information can possibly be. And yet we still have full syndrome arseholes like Rick Rollens sending out emails that contain:

As stated many times before in these Reports, the numbers being reported by DDS only reflect those children that have received a professional diagnosis of full syndrome DSM IV autism, and do not include those with any other autism spectrum disorder such as PDD, NOS, Asperger’s, HFA, Retts, etc

So Rick:

a) Its impossible for a document/process written in 1978 and updated in 1986 to reflect the DSM IV.
b) The numbers quite clearly _do_ contain PDD-NOS, Aspergers Syndrome and Rett Syndrome.

And hey, if CDDS data is good then how would the following be explained?

It’s now 2005. Mercury started to be removed from vaccines roughly in 2001, we don’t know exactly when as the FDA won’t tell us, but kids entering the system now, four year olds for example in California entering the Dept of Developmental Services [CDDS] were born in 2001. So those kids theoretically get less mercury on average than kids born in 2000. So we should see fewer cases entering the system this year than we did last year.

– David Kirby

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

– David Kirby

Late 2006 should be the first time that rates go down,” said Handley. “If they don’t, our. hypothesis will need to be reexamined.

– JB Handley

18 Responses to “CDDS and full syndrome arseholes”

  1. Rich July 14, 2007 at 10:45 #

    This is a really nice, succinct post. I should point out that there a revised CDER will be used, but only in 2008.

  2. Matt July 14, 2007 at 14:09 #

    He did get one thing sorta correct–the DDS doesn’t distinguish the DSM-IV category of HFA….because there is none. Yet, somehow Mr. Rollens includes those children who have “No MR”…what definition of “High Functioning” does Mr. Rollens use?

    Mr. Rollens just led a small (but vocal) subset of California autism parents on an antivaccine crusade. He rallied support to shoot down a proposed law, AB16. He, however, appears to have done nothing on important special education laws that needed support. If he did anything, it was way below the radar.

    It’s a weird symbiosis. He needs the “epidemic” to keep his faction together. This allows them to use anti-vaccine rhetoric to keep the notion of vaccine-induced-autism in the public eye. This time they were able to jump on a bandwagon of religious groups and others who were afraid of Gardasil–the HPV (anti cervical cancer) vaccine. This was a big deal, gathering support from all around the US, not just California.

    I wonder about the future. How many families with someone dying of cervical cancer will want to vote to keep support for the DDS and the “autism tsunami” at a reasonable level?

    As to the mercury/vaccine BS, the goalposts just keep moving. Now it is supposedly that vaccines with mercury didn’t expire until 20XX,. XX is always sometime that allows for “mercury induced autism” to keep growing.

    I don’t know whose pediatrician stocks 5-10 years worth of vaccine in his office. Mine certainly doesn’t. When mercury was removed from vaccines, they were off his shelves in a year. They weren’t replaced by mercury containing vaccines from the supplier either.

    Rollens is a lobbyist for the Regional Centers–the people who distribute the money for the CDDS. Why doesn’t he ever report on data that isn’t publically available? DDS will provide custom database searches (for a fee). Why not look into the data with more detail?

    Rollens is a polarizing agent in California. Many parents see him as their “Caped Crusader” fighting the battles in Sacramento that they don’t know how to attack. Most parents don’t even know who he is. There are a sizable fraction who would like to see Mr. Rollens use his skills and contacts for something more real and more helpful than promoting a fake “epidemic” and a very misguided anti-vaccine campaign.

    Matt

  3. Do'C July 14, 2007 at 15:23 #

    As stated many times before in these Reports, the numbers being reported by DDS only reflect those children that have received a professional diagnosis of full syndrome DSM IV autism, and do not include those with any other autism spectrum disorder such as PDD, NOS, Asperger’s, HFA, Retts, etc.

    It’s difficult to think that someone could write this and believe that they are correct. In the 3-5 year-old autism caseload cohort alone, the caseload is easily double what it should be if the caseload truly reflected actual autistic disorder (299.0), and nothing else.

  4. Suzanne July 14, 2007 at 15:33 #

    Glad to have read this. I’ll be passing it along to another group.
    Autism Epidemic Hysteria must end.

  5. Matt July 14, 2007 at 16:13 #

    “It’s difficult to think that someone could write this and believe that they are correct. In the 3-5 year-old autism caseload cohort alone, the caseload is easily double what it should be if the caseload truly reflected actual autistic disorder (299.0), and nothing else.”

    Don’t you think that Rollens would spin this into, “the epidemic is twice as big as we thought!”

    Matt

  6. Do'C July 14, 2007 at 16:52 #

    Don’t you think that Rollens would spin this into, “the epidemic is twice as big as we thought!”

    Perhaps, but the growth in the 3-5 year-old autism caseload cohort has been linear, despite the removal of thimerosal from most routine childhood immunizations. Remember the original “epidemic” argument is that CDDS data reflected the increased use of Thimerosal. If that were the case, its tremedous reduction should have already caused a significant drop in the actual caseload.

    The bottom line: the CDDS data is useless for demonstrating actual autism prevalence. There is no data supporting an “epidemic” in the first place.

    If Rollens wanted to spin this as a “twice as big epidemic”, it would need to become an “Autism, PDD-NOS, Asperger’s, and Rett epidemic”. I doubt he’d find data to support any such “epidemic”.

  7. another autism mom July 14, 2007 at 16:52 #

    Talking about full syndrome arseholes… I almost puked when I read Schafer’s article in my local FEAT newsletter “explaining” why autism is “not genetic”. I felt like writing to the FEAT Board to complain about it, but instead I’m going to talk to someone in person so I don’t run the risk of having my letter forwarded to the milicia. However, I understand that the guy may have a lot of influence in this Board, so even if other directors don’t agree with his point of view, his crap will always get published anyway.

  8. Joseph July 14, 2007 at 18:13 #

    CDDS is not epidemiology, that’s for sure, but I think it helps to understand to what extent the data can be useful.

    Most children categorized as having autism in CDDS do in fact have a spectrum diagnosis. I think only about 1% are found to be outside the spectrum altogether when evaluated. (Camille can correct me if that’s wrong). That’s pretty good classification.

    Now, not all (or maybe even most) autistics in California are registered with CDDS. A good guess is that this is truer of older autistics.

    What I conclude from these two observations is that CDDS caseloads can be used to obtain a good approximate *lower bound* on ASD prevalence (but not incidence as Kirby, the Geiers and others try to do).

  9. Ms. Clark July 14, 2007 at 20:09 #

    Thanks, Kev. It would be wonderful if Rollens (personal hero to Andy Wakefield) had to face some kind of consequences for his hysteria mongering.

  10. dyslexic_angeleno July 14, 2007 at 20:55 #

    That train-wreck of an advocate needs to be full-syndrome fired from both ARCA and The MIND Institute.

  11. Matt July 15, 2007 at 03:08 #

    “That train-wreck of an advocate needs to be full-syndrome fired from both ARCA and The MIND Institute.”

    Check the website for the University of California. Do a search for “Rollens” under the phonebooks…tell me if he was given a job in the last couple of weeks, because he wasn’t on there when I checked.

    Call the MIND Institute. Ask for “Mr Rick Rollens”. Listen to them say, “ugh, Rick Rollens” and forward you to some admin who will tell you that he doesn’t have an office or a position at MIND.

    Rollens has one job as near as I can tell–being a lobbyist for his one-man lobbying firm. Before that he was a politician. A politician who never had to go through public scrutiny to get elected. Think about that one.

    He is very good at the “not quite lie”.

    When he says, “Right here at the MIND Institute”, he could just as well say, “Right here at Cal State Northridge” (his alma mater)…heck, he could say, “Right here at DisneyLand”. I bet he’s been there as well.

    Now, that is somewhat disingenuous on my part as Rollens did help get the initial funding for MIND. My guess is that when he states the $70 million number (or whatever he claims he has raised), he is including a lot of grant money that he never had any hand in. There are probably some hard working researchers who would like to have credit for their work in obtaining their funding.

    Take a look at his recent “disaster in the making” statement about AB16. It’s filled with misleading statements that are, however, not legally untrue. Classic.

    Matt

  12. Ms. Clark July 15, 2007 at 03:47 #

    There was an long article about the MIND and the “founding fathers” that appeared in a Southwest Airlines magazine (or some airlines magazine), it said that Rollens didn’t donate any money to getting the MIND built, but he used his connections at the legislature as his donation. The other “founding fathers” coughed up actual cash, but it was just to get the idea going, they didn’t really pay for a brick or a two-by-four or a square foot of carpet as far as I can tell. That was paid for by taxpayers, uhm, because Rollens helped convince the legislature that because his kid was ruined by vaccines that there must be an epidemic of kids like that about to destroy the state, blah blah. And voila! A very fancy building built on a foundation of fibs.

  13. Matt July 15, 2007 at 17:58 #

    “You Don’t Need an Epidemic to Do the Right Thing ”

    Actually, claiming a false epidemic does the wrong thing in many ways. For one, it focuses attention on identifcation only on the youngest children. Over 1/3 of the kids identified with autism in the California school system are ID’d after age 8. Were these kids getting appropriate education before then? What opportunities are we (and, more importantly, they) missing?

    Matt

  14. dyslexic_angeleno July 15, 2007 at 19:00 #

    Hi, Matt:

    I know of Rollens only too well, and for too long for that matter. Yeah, I know he’s not “employed” by the MIND Inst. In fact, he’d be horrified at the thought as he thinks he owns the dam* place. I remember when he got the state (our state) funding (our tax dollars) … one spring/summer several years back for “his stake” — thereby making him a “founding father”. He contracts (i think the correct term) with ARCA — where he’s paid via our state tax dollars. He sits on board mtgs at MIND. Yeah, I know many at MIND are way weary of him and have been for some time, but no one there seems to ever confront him on his grievous mis-statements. Both entities — MIND & ARCA — need to shake his hand and show him the proverbial door. And then, never mention his name again … unless it’s to call him out for the disgraceful way he’s mis-advocated for all those on the spectrum. BTW, I heartlily agree with your take; I’m just clarifying my own.

  15. Matt July 15, 2007 at 21:49 #

    Do’C–

    I totally agree. But, if people had time to digest these facts, they would have already caught on to the “full syndrome” facade.

    dyslexic_angeleno,

    Good to hear another Californian! Yeah, a lot of parents think highly of him too. But I agree with you. MIND and ARCA need to shake his hand, show him the door and say, “Write when you get work!”. But, that would be the “right” thing to do, maybe not the “economically best”…

    Matt

  16. Shinga July 16, 2007 at 14:26 #

    Ah, now I understand. David Thrower has issued a Rapid Response to a BMJ item and mentions just these data:

    Finally, we come to the explosion in autism numbers. There aren’t any figures in the UK, of course – the Department of Health’s fixated by suspected measles numbers, but bored by the idea of collecting data on autism (very mysterious genetic condition, = can’t do anything about it, = refer callers to the National Autistic Society), but the California Department of Developmental Services has just reported an increase in full DSM-IV autism from 2,700 in 1987 to 35,000 in Spring 2007. Don’t tell me, it’s all down to better recognition…..

    Is it worth you dropping them a link to your exploration of this issue?

Trackbacks/Pingbacks

  1. You Don’t Need an Epidemic to Do the Right Thing - July 15, 2007

    […] My son has many challenges (he has what, in some circles, goes by the name of “full syndrome autism“) and (as I noted above), worrying about him is something much of my family engages […]

  2. » Why investigating Wakefield matters - Autism Blog, Web Design Blog - August 1, 2007

    […] What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs. […]

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