Boy, this has been an emotional few weeks after Dr. Thompson said all of those things via Dr. Wakefield’s released video. I have spoken with everyone I can think of regarding this from both sides of this issue. I also got a response from the director of CDC’s disability area which I will post it here.
And, this is just my take after reading all of the information I got and my advice to my fellow Somali autism parents. First, as I have said in my previous posts, Dr. Allsopp is a lot of things but a race traitor is not one of them. Dr. Allsopp is a trend setter and an amazing autism researcher. As an African American doctor in CDC – she probably worked harder than anyone to get where she is and as a Black autism mom – I respect, admire and trust her judgment. Fellow IACC member and friend Matt Carey from Left Brain Right Brain autism blog also wrote about Dr. Allsopp and all of the barriers she had to break to get to where she is today. I can’t even imagine during that time in the south – the land of George Wallace for a Black woman to do what she did. She is truly an amazing person.
I don’t know everyone at CDC, but those that I know such as Dr. Boyle and Dr. Wiggins are equally amazing and I trust their research with no hesitation and no reservation as an autism mom.
So, what does this mean now? after I got the response, I called NIMH and CDC and looked back the University of Minnesota Somali autism study and the number’s ain’t adding up. Let’s start with the facts, but please remember – I am no researcher nor like to play one. In fact, I get a headache and would rather take a nap & would rather concentrate on autism services policy. CDC told me they counted all of the children that had birth certificates because those without one, they did not know if they were born in another state or in another country. Birth certificates gave them more information on the mother and the child which makes sense. They also said anyone can re-analyze that data to see if they get the same results.
Now, this was 10 years ago so let’s assume if CDC counted all of those kids – there would have been more Black boys diagnosed with autism. Wouldn’t we see more autism diagnoses in Black children now? For example, the UMN study said autism in Minneapolis for Somalis was 1 in32, for Whites 1 in 36, for Blacks non Somali 1 in 62 and for Hispanics 1 in 80. In other words while Somali American kids had the highest rate, the Black kids whose parents were not Somali had much lower rate. Yes, I know Mpls is more White than Atlanta and epidemiology is not an exact science, but the rate was not even close like the White kids, instead it was African American kids had a chance of two times less likely to get autism than Somali kids and White kids. Plus, if you look at the current ADDM system in all of the states that have it – the rate of White children with autism is usually higher than the rate of Black and Hispanic children.
Yes, some might say well that is because most Black kids are not diagnosed properly or given the wrong diagnoses or mis-diagnosed. So, personally I rather work and advocate on how to assure Black kids get the right diagnoses at the right time, get access to early behavior intervention and equal access to other treatments and therapies. I think our energy is better spent on that than picking and insulting one of our few CDC minority researchers.
Plus, my advice to those that have been saying CDC is racist would be how diverse is your agency, your blog contributors, your autism organization such as Generation Rescue, Age of Autism, Dr. Wakefield’s media channel – how many people work there, in a position of leadership reflect the African American community in this country. How many of them actually advocate for our minority kids to get early therapy such as ABA intervention and equal opportunity.
I think doing this very emotional Tuskegee video is both cruel and cheap attempt to take our eyes and mind of what is important and that is making sure our Black autistic children get access to equal intensive ABA therapy on time and fairly. Personally, I rather advocate and concentrate on that disparity.
Finally, my other thought here is why did Dr. Thompson wait for 10 years to speak up and why not just re-do the study with others and see if the results are the same. I mean research should always be repeated and replicated to assure its validity. Instead he started a fire and is now hiding without explaining his words. If he could not explain and defend his words, then he should’ve kept his mouth shut and not scare parents.
Below is the letter I got from CDC;
September 2, 2014
Dear Ms. Abdull:
Thank you for reaching out to us to question the validity of this report. CDC’s study about age at first Measles-Mumps-Rubella (MMR) vaccination and autism, published in Pediatrics in 2004, included boys and girls from different ethnic groups, including black children. The manuscript presented the results on two sets of children:
1) All children who were initially recruited for the study, and
2) the subset of children who had a Georgia birth certificate.
Access to the information on the birth certificates allowed researchers to assess more complete information on race as well as other important characteristics, including possible risk factors for autism such as the child’s birth weight, and mother’s age and education. This information was not available for the children without birth certificates; hence CDC study did not present data by race on Black, White, or Other race children from the whole study sample. It presented the results on Black and White/Other race children from the group with birth certificates.
The study looked at different age groups: children vaccinated by 18 months, 24 months, and 36 months. The findings revealed that vaccination between 24 and 36 months was slightly more common among children with autism, and that association was strongest among children 3-5 years of age. The authors reported this finding was most likely a result of immunization requirements for preschool special education program attendance in children with autism.
The data CDC collected for this study continue to be available for analysis by others. CDC welcomes analysis by others that can be submitted for peer-review and publication. For more information on how to access this public-use dataset please go to the CDC website.
Additional studies and a more recent rigorous review by the Institute of Medicine have found that MMR vaccine does not increase the risk of autism.
Vaccines protect the health of children in the United States so well that most parents today have never seen first-hand the devastating consequences of diseases now stopped by vaccines.
However, this year a record number of U.S. children has suffered from measles. We do not want to lose any opportunity to protect all of our children when we have the means to do so.
Sincerely,
__________________________________________________________________________________________
I would like re-iterate my support for CDC and my disappoinment for Minn dept of health who insteaad of telling scared and frustrated parents how to help their children, they keep saying stupid things like Autism existed in Somalia. As CDC states Measles is a real problem, it happened in Mpls by parents scared of autism and the best MDH can do is preach bunch of useless words. C’mon MDH do your charge of assessment and assurance. I ask Minnesota Department of Health (MDH) to find a way to help minority parents to learn the signs of autism so they can act early and get early intensive intervention which is the best road to their best outcome. To me as minority autism mother and advocate, that is the best way to defeat autism racial disparity. It is not comparing Tuskegee experiment to autism. That is not a fair comparison.
As usual, above words do not represent any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate
