CDC: SITTING ON AUTISM DATA?
By Dan Hollenbeck
The CDC has two ongoing projects to study autism prevalence: ADDM Network (1) and the MADDSP (2).
In 2003 the MADDSP program published a study pegging autism prevalence at 1 in 250, based on data recorded in 1996 (3). A short four years later, on Feb 7, 2007 the ADDM Network published two studies indicating autism prevalence at 1 in 150, using data from 2000 and 2002 (4, 5). The second of these studies showed that several states showed a statistically significant growth of autism prevalence between 2000 and 2002 (5). Therefore, the current CDC autism prevalence of 1 in 150 is based on six-year old data.
| Autism Prevalence | Year Published | Year data recorded | Source |
|---|---|---|---|
| 1 in 250 | 2003 | 1996 | MADDSP |
| 1 in 150 | 2007 | 2000 and 2002 | ADDM Network and MADDSP |
In addition to publishing the two studies on Feb 7, 2007 the CDC updated their website in order to document ongoing CDC Autism Activities (6). There is a paragraph in this amendment that details future autism prevalence studies the CDC will publish. It states:
"CDC will soon publish the following:
An update from MADDSP on the prevalence of ASDs over time in metropolitan Atlanta.
Updated reports from the ADDM Network on the prevalence of ASDs in multiple areas of the United States in 2004 and 2006."
This begs the question, why has the CDC not published these reports and data yet?
Allow me to comment on these as-yet unpublished reports separately.
1) An update from MADDSP on the prevalence of ASDs over time in metropolitan Atlanta:
To clarify, the MADDSP program is the CDC. The data used in the program are recorded by the CDC itself. Therefore, we rightfully expect the data to be of excellent quality and consistent methodology. The MADDSP has autism prevalence data recorded in 1996, 2000, 2002, (possibly) 2004, and 2006, which is a ten-year time-frame to determine any changes in autism prevalence; a wealth of information by any measure.
As of April, 2008, MADDSP has publicly released data only from 1996, 2000 and 2002 via the published CDC studies. Using data points taken from these studies, we can track the autism prevalence in Atlanta over 1996, 2000 and 2002, a six-year window; from this, we calculate the percentage change of autism prevalence in Atlanta to be +62%.
| Year | Autism Prevalence for 8 year olds per 1,000 | 95% CI |
|---|---|---|
| 1996 | 4.7 | Not reported |
| 2000 | 6.5 | 5.8 - 7.3 |
| 2002 | 7.6 | 5.8 -8.5 |
| Percent Change | +62% |
Is it possible that the reason the CDC has not published this study is that the CDC’s own data clearly shows autism prevalence increased in Atlanta by 62% from 1996 to 2002?
What about the degree of cognitive impairment by IQ score (IQ ≤ 70)? Three CDC studies provide us with cognitive impairment data from the Atlanta autism population:
| Year recorded | Females with | Males with autism and IQ ≤ 70 | Age range |
|---|---|---|---|
| 1996 | 16% | 52% | Ages 3-10 |
| 2000 | 60% | 39% | Age 8 |
| 2002 | 60% | 50% | Age 8 |
The above data from the three CDC studies clearly show that the cognitive impairment of children with autism is not becoming less severe over time. The data indicate that the level of impairment for girls is getting worse, and is relatively stable for boys. This contradicts the CDC’s claim that less impaired children are receiving a diagnosis of autism recently than in previous years. While the 1996 data cover a wider age-range, the CDC has the complete 1996 data-set, and could separate it by age to indicate particular ages for the three study years.
It is not unreasonable to hypothesize that the CDC has not published this study because their own data show the cognitive impairment of girls with autism is getting worse, and is stable for boys, from 1996 to 2002.
2) Updated reports from the ADDM Network on the prevalence of ASDs in multiple areas of the United States in 2004 and 2006:
It is unclear if either the ADDM Network or the MADDSP program have collected autism prevalence data for 2004. While part of the CDC’s website indicates that data was recorded in 2004, the ADDM Network and MADDSP pages make no mention of any for that year.
The table below summarizes the autism prevalence data the CDC has amassed, and their reference by the CDC projects:
| Year | MADDSP | ADDM-Network |
|---|---|---|
| 1996 | yes | |
| 2000 | yes | 6 sites |
| 2002 | yes | 15 sites |
| 2004 | possibly | possibly |
| 2006 | yes | 15 sites |
| 2010 | to be done | 10 sites |
Putting the issue aside about whether the ADDM Network sites recorded autism prevalence data in 2004, the project most certainly recorded data in 2006. Therefore, the ADDM Network has six years of autism prevalence data to analyze and publish.
The bottom line is that the MADDSP Project (i.e., the CDC) has data recorded over a ten-year time period in Atlanta and the ADDM Network sites have data recorded over a six-year window. As things stand, the Federal Government holds itself captive to the fantasy that there is such a thing as a galloping genetic epidemic called autism-- at the same time that it is seemingly content to sit on information that might give great insight into whether or not the cause of autism has an environmental component.
The answer to that question would be priceless.
I hope the CDC will take note, and utilize their considerable resources to publish their own analysis of this data. Whatever the cost in present embarrassment, it will be a blessing for all future Federal agencies.
Dan Hollenbeck is the author of the "Public Schools Autism Prevalence Reports Series" that is used by autism advocates, researchers and educators across the country. (7) He is the Director of Information Technology for Thoughtful House Center for Children and Director of FightingAutism. (8) He has previously served on the Board of Directors, as well as the Research Committee, for SafeMinds, an influential not-for profit autism organization. (9) As an autism advocate and “tech geek”, he is very interested in applying technology in support of autism research, education, treatment, and advocacy.
References:
1. http://www.cdc.gov/ncbddd/autism/addm.htm
2. http://www.cdc.gov/ncbddd/dd/maddsp.htm
3. http://www.affymetrix.com/corporate/media/press_kits/download/autism_jamaprevalencestudy.pdf
4. http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5601a1.htm
5. http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5601a2.htm
6. http://www.cdc.gov/ncbddd/autism/documents/FACTSHEETAutismGeneral%20February7_2007%20_2_.pdf
7. http://www.fightingautism.org/idea/autism-prevalence-report.php
8. http://www.thoughtfulhouse.org
9. http://www.safeminds.org
I agree about 'sitting on data about natural infection', although.. They might not actually have it - I mean, they are all hung-ho for vaccines, why *bother* to collect data about natural infections? But then, if people who have natural infections are healthier, as seems to be the case from the few studies that have been done.. (are there any others other than the anecdotal HomeFirst study - and is that published anywhere?) The Govt/Pharma would do well to sit on the data - after all, if some percentage of AIDS is not caused by HIV (which I do believe exists), whether that other thing be HHV-6 or other things.. Less money for the protease inhibitors.. (I bet they work as well on HHV-6 as they do on HIV). After all, 'AIDS' *is* just "immune deficiency *syndrome*". And there are plenty of things that can cause immune deficiency, and a syndrome is defined as something with an unknown/poorly-known cause (hence 'chronic fatigue syndrome' which oddly enough is also thought to perhaps be HHV-6)
Revolution. Wasn't it one of the Founding Fathers who said a good democracy needed a revolution every hundred years or so? About food and gas prices, I keep wondering when the book "The Ethanol Recession" will be written - I swear, corn-based ethanol is a waste of money, a waste of energy (more than gas when you add ALL the energy inputs up), a waste of carbon (again, more than gas), a waste of water (almost a gallon for each gallon of ethanol I think), of money (federal subsidies..), and of course CORN WE - and farm animals - COULD EAT!!!
If they could figure out how make ethanol out of cellulouse (i.e. tree bark and underbrush), and changed our stupid drug laws to let us actually make things out of hemp (including ethanol, if the above were figured out)
Posted by: Jim Witte | May 13, 2008 at 01:49 AM
Not only do I think they are sitting on the data regarding Autism, I think they are sitting on a lot of other information such as how natural infection with the various childhood diseases might be beneficial to the immune system.
Posted by: FORCED ANARCHY | May 12, 2008 at 09:02 AM
Does anyone remember the term revolution?? I just don't get why people do not see a problem with expenses - gas, food, education, etc. etc. What a passive society we live in that we will keep letting out government abuse/experiment on our babies with vaccines...it is just sick and yet many justify it!
Posted by: Dawn Crim | May 11, 2008 at 01:04 AM
just a comment, is my math close that if the # was 1 in 250 in 1996, and 1 in 150 in say 2001(average of 2000, 2002)......than projecting that same increase another 5 years (2006) if published the 2006 # would be close to 1 in 90, and taking the projection to 2008, the current number would be 1 in 76. and that is if the actual rate hasnt increased.
Posted by: mike | May 07, 2008 at 03:08 PM
Monica,
Please ask you congressman --when are they going to BAN mercury/thimerosal from the flu shot?? A recent article says they are planning to start next year's flu shot in AUGUST so they can catch about 11 MILLION more children during their back-to-school physical. In addition to the mercury issue, there is also the concern of giving this vaccine in tandem with other vaccines which would be the case for many 5-yr.olds getting their boosters or "catch-up" shots. (Of course, it goes without saying that the safety of this has never been studied.)
Thanks,
Rachel
Posted by: Rachel Ford | May 06, 2008 at 09:10 PM
Thank you Dan! I'm on the edge of my seat waiting to hear the explanation from the CDC if the rate is still increasing.
Are they going to dismiss the rate as no real change, just EVEN BETTER DIAGNOSING BY DOCTORS?
Will they perhaps allege that doctors are now OVERDIAGNOSING?
Are parents seeking out a diagnosis of autism because of all the programs their child can have access to?
(These are the medical myths out there now and I'm sure they'll be around for a long time to come.)
Anne Dachel
Media editor
Posted by: Anne Dachel | May 06, 2008 at 08:46 PM
Thank you Sonja. The labs came back today as for Jade's platelets and clotting, which were all normal. I only wish that were good news...
Atleast I have next week's meeting to remain focused on, and keep my mind on creating positive changes.
Posted by: monica | May 06, 2008 at 08:01 PM
Monica,
Good luck with the congressman...I'm sure you will be very impressive - you have all of us at your back! My prayers are with Jade...please keep us informed.
Sonja
Posted by: Sonja | May 06, 2008 at 04:35 PM
HELP!!!!!!!!!!!!!!!!!!!!!
Finally, my Congressman's office got back to me, and I have a meeting scheduled for next Tuesday.
I need help with talking points!!!!!
I know I do want to ask, why Gerberding claimed she hadn't read the Poling case last month. I want to ask if they intend to change the schedule. I also want to explain the problem with children that are contraindicated for vaccination receiving vaccines anyway. I mean, a live virus rotavirus vaccine at 2 months? I plan on providing him with a great deal of information about the occurance od Primary Immunodeficiency, and how we need to weed these kids out prior to vaccination.
Our DAN ordered mito testing, so we had some of those drawn yesterday, and may have answers before the meeting next week.
I also plan on asking him to see that Florida gets increased federal funding, so that children on Medicaid can receive ABA.
Right now, I am so overwhelmed, I am having a hard time collecting thoughts. Jade has been coming home repeatedly with grab marks on her arms, and no explanation from the school. She has also had nosebleeds, so the pcp ordered platelet count, and clotting time tests. So, either she has a blood disorder, or she is being yanked around at school. The school called me today, and told me they have a lawyer, and deny seeing any of the marks but on 2 occasions.
I really doubt she is going back there, unless of course, it IS her blood. Neither outcome is fun.
*sigh*
It is days like this when I want to run into the streets screaming and crying, but thankfully AoA is here, and I know I am not in this insanity alone. Thank you guys for being in a club nobody wanted to join.
Please, any documents, or talking points you can think of for my Congressman, please email them to Monica@aware4autism.org
Posted by: Monica | May 06, 2008 at 03:23 PM
As far as the CDC releasing Autism data, when will then be now?
http://deadsmall.com/3KD
Posted by: Media Scholar | May 06, 2008 at 12:40 PM
I think as they come up with more lethal strains of vaccines - 5 in 1, and 7 in 1 and so forth, the cognitive decline becomes more evident. I am sure this is going to impact the brain function of NT kids as well, so that the future generations can remark "you know what, my mom's not so hot in the upstairs department, if you get my drift." Well done, America. You are doing a swell job of making sure that you are going to be keeping up with your superpower status!!
We can add this finding to the nice Mother's Day gift of the CDC's latest "schizophrenic mom gives birth to autistic child" study. They are doing a swell PR job, these CDC guys. Nice way to appease an already fairly mad subset of parents. You should give your PR guy a big promotion and a nice bonus to go with it. Good job guys LOL.
Posted by: Mothers Day gift | May 06, 2008 at 09:53 AM
YEAH DAN! I wonder if the CDC hates that the writers who post here are more intelligent than their employees lol. Kudos to you and Laura for all you do.
ronna hochbein
Posted by: ronna hochbein | May 06, 2008 at 06:29 AM