1 in 88 Autism/ASD among Children of Military Families
Everyone evidently preferred believing the CDC.
Even smart journalists and TV news commentators were lured into believing that the ASD prevalence rates of 1 in 150 were “new” and current as of February 2007 when indeed they originated from a 2002 CDC study that examined rates among 8-year-old children, children who were born in 1994.
Since 1999, all our autism prevalence research has been based on published official statistics from the U.S. Department of Education Annual Reports to Congress.
In the 2007 paper, we compared the number of 6-year-old children with Autism/ASD attending U.S. schools in 2000-2001, the same group the CDC investigated, with those attending school in 2006-2007. We found that the number of registered affected children had significantly increased in every state except for Alaska, Oklahoma and the District of Columbia. New Mexico recorded the greatest increase at 350%.
The average increase was 124% nationwide, and we concluded that when the CDC was telling the world that the “new” prevalence rate of Autism/ASD was 1 in 150 in the United States, the “real and current” prevalence rate was actually 1 in 67.
In the last few months, a small group of military parents also disagreed with the CDC figures and decided to investigate the prevalence of ASD among military dependents.
A mother requested the official information through the Freedom of Information Act (FOIA) and the Chief, Freedom of Information Service Center, released it all to her on June 23, 2008.
The report came on the stationary of
THE OFFICE OF THE ASSISTANT SECRETARY OF DEFENSE
16401 EAST CENTRETECH PARKWAY
AURORA, COLORADO 80011-9066
The assigned Control Number for the request by the Privacy office was 2008-45 (FOIA).
For obvious reasons, we will not release the names of the parent who requested the information and the individuals who reviewed it and explained it to us. We can say that they are all most knowledgeable with the subject and remarkably impressive in their research. We are certainly most grateful to each and every one of them.
In the following electronically-reproduced box, the Chief of FOI Service Center listed all the reported diseases by name and code. It should be noted that the Military omit the decimal point so that for example autism is listed as 29900 instead of the usual ICD-9 Medical Diagnosis Code: 299.00. The information is from the past two years.
The report provided by the Privacy Office at The Department of Defense contained the complete requested information. Unlike FOIA releases by the CDC, there were no blank pages or huge areas blackened with magic markers.
The following is an exact electronic copy of the provided DOD FOIA data.
The left box lists the diagnoses, by code and the number of diagnosed children and young adult dependents in the different categories. ADFM stands for Active Duty Family Member. The three important totals are those in column 2, 4 and 6 [ADFM, Retired Dependent and Grand total].
The right box lists the children and young adults by diagnosis actually enrolled in the TRICARE Extended Care Health Option (also known as the ECHO program).
According to the TRICARE Operations Manual Chapter 20 Section 10, “among the more than 1.2 million children of active duty military personnel, approximately 8500 carry one of the autism spectrum disorder diagnoses” giving a ratio of 1 in 141. According to the Congressional Budget Office, 700 of the affected children are receiving some level of ABA therapy under the TRICARE ECHO program.
The recently-released FOIA data provides, as a parent put it so well, “a sobering picture”: There are at least 13,243 children and young adults diagnosed with an ASD among active duty military children. According to a 2005 study, there were 1,177,190 military dependent children (all ages) in that population giving a ratio of 1:89 (1:88 if not rounded) of medically-diagnosed children.
The document also states that there are 8,784 children of retired veterans making the grand total of diagnosed children 22,356. Because the FOIA data search only went back 24 months and did not include patients with private insurance other than TRICARE (i.e. via an employed spouse), there may actually be more ASD children than actually reported.
Just as unfortunate is the fact that more than 90% of the active-duty military children are currently getting absolutely no behavioral intervention services through TRICARE to help them and their families.
As the FOIA data indicate only 1374 out of the 13234 diagnosed active duty family members or 10.4% are enrolled in the ECHO Program.
This is shameful!
Whether the problem is significant shortage of TRICARE authorized providers in military communities, long waiting lists, restrictive policies or lack of awareness that services are needed and mandated is unknown. What is certain is that the United States Department of Defense has a major problem that needs immediate attention.
Imagine the ramifications on society if 90% of children with autism and ASD received no treatment.
The children of our men and women in uniform have truly been “left behind”!
We would like to bring this serious situation to the attention of our lawmakers on Capitol Hill and ask them to tell the Country what they will personally do about this grave problem. The Armed Services Committee has the ability to legislate the changes needed to better serve this patient population, and Congress is facing a golden moment to do just that. The National Defense Authorization Act (which governs the medical benefit for military dependents) will soon come to vote on the Senate floor. Families need a Senate leader to assist.
We call on all Autism advocacy organizations to act. Regardless of our convictions and the names of our associations, we are first parents and grandparents and we must join hands and help the forgotten children with autism whose parents are serving in our armed forces. These dear children need treatment just as much as our children. Our military men and women who serve this great nation with honor and integrity and deploy repeatedly to combat deserve better. Much more needs to be done.
Talking to Dr. Sanjay Gupta of CNN on March 29, 2008, CDC Director Gerberding said: “We can say absolutely for sure that we don’t really understand the causes of autism…”
With all due respect, it may be time for Dr Gerberding to try to understand the causes of autism because the number of affected children is certainly not decreasing. It is a fact that the Centers for Disease Control and Prevention can never “control and prevent” a disease without knowing its causes.
Meanwhile, the Director can at least disclose that the 1 in 150 rate was antiquated in February 2007, when the CDC claimed it was new because if she does not, she will have a great difficulty explaining why ASD prevalence among children of active military personnel was 1 in 88.
While our scientific community disputes the causal factors of autism and puts spin on the actual numbers and incidence rates, there is no disputing the fact that early and intensive intervention work. This is absent of any controversy and it is grand time we focus on treating this precious patient population.
As a country, we have failed miserably in this regard and a lot more needs to be done… NOW.
Our Nation’s heroes deserve nothing less.
- Edward Yazbak MD, FAAP
Raymond W. Gallup