Archived | Autism Speaks & CDC: Autism Epidemiology Network | Circa 2007 #NotAnAutisticAlly

Autism Speaks in partnership with CDC on Autism Prevalence


Autism Speaks and the CDC are establishing an international information sharing network to study the epidemiology of autism

We invite researchers who are actively engaged in epidemiologic projects to collaborate with both Autism Speaks/CDC and each other to help address issues that will lead to advancing our understanding of the epidemiology of autism. Further, we are establishing workgroups that focus on the epidemiology of autism based on different types of ascertainment approaches. 

The three workgroups are: 

Registry systems
Records or service-based approach
Developing/low service countries

We encourage you to read each of these approaches to see which best fits your current or proposed research method and population under study and to become active with us by joining one or more of these workgroups. If you decide you would like to participate in our ongoing collaboration you can join the Autism Epidemiology list-serv for periodic updates.

Learn more about the Network 

Autism Speaks and the CDC meet monthly by telephone to discuss progress of the initiative and upcoming possibilities and activities. The minutes from these monthly conferences can be found here:

Download minutes from the epidemiology subcommittee monthly teleconference calls, September 2006 through December 2006

Download minutes from the epidemiology subcommittee monthly teleconference calls, January 2007 through June 2007


To connect to our secure, web-based Epidemiology Research Forum, 
click here.


If you have difficulty registering or connecting to the forum, please contact Michael Rosanoff. 


SUMMARY OF MAY 2ndMEETING

The International Autism Epidemiology of Autism Network is proceeding with the recommendations from the May 2ndmeeting in Seattle Washington.

To learn more about the background of this initiative as well as the specific approaches and projects planned, please see a presentation prepared by Dr. Marshalyn Yeargin-Allsopp, M.D. (download pdf of ppt. presentation here).

Screenshot of Title Screen: Epidemiology and Autism Speaks: Global Opportunities

Our Mission

Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring an initiative to explore possible scientific opportunities in an international collaborative effort in autism epidemiology.

The long range objectives of this project are to

(1) Develop a network for exchange and collaboration of epidemiology activities across countries;

(2) Examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research; and

(3) Identify the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings.


About This Program

Over the past decade, the prevalence of children identified with autism and autism spectrum disorders (ASDs) has increased in developing countries. In the United States , the prevalence of autism spectrum disorders is now estimated at 1 in 150 children, with some states showing a prevalence as high as 1 in 94.  

However, many unanswered questions exist about what is the prevalence of autism in different communities, especially in developing countries, trends in prevalence over time, and what is causing the increase in prevalence.

Determining and monitoring the prevalence over time is challenging, but important given the concerns about increased prevalence. In addition to examining prevalence and trends over time, epidemiologic research is needed to help develop standardized case definitions, help define the features of people with an ASD on a population level, address questions regarding risk factors and causes, and evaluate identification and intervention patterns for people with ASD.

Some questions that can be answered using epidemiologic methods, for example include, are some subgroups of the population more affected than others? How do specific genes and the environment interact in terms of causation? Are there public health programs that have unintended consequences, e.g., vaccines? vitamins?.

Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring an initiative to explore possible scientific opportunities in an international collaborative effort in autism epidemiology.

The long range objectives of this project are to (1) Develop a network for exchange and collaboration of epidemiology activities across countries; (2) Examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research; and (3) Identify the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings.

There were two meetings in 2005 and 2006 that gathered researchers in autism epidemiology from all over the world to assess interest in forming an international epidemiologic network.

On the basis of the interest expressed at these two meetings, we invite researchers who are actively engaged in epidemiologic projects to collaborate with both Autism Speaks/CDC and each other to help address issues that will lead to advancing our understanding of the epidemiology of autism.

Further, we are establishing workgroups that focus on the epidemiology of autism based on different types of ascertainment approaches.

The three proposed workgroups are: 

Registry systems

Records or service-based approach

Developing/low service countries

We encourage you to read each of these approaches to see which best fits your current or proposed research method and population under study and to become active with us by joining one or more of these workgroups. If you decide you would like to participate in our ongoing collaboration you can join the Autism Epidemiology list-serv for periodic updates.



Conference Call

Autism Speaks/CDC Epidemiology Subcommittee

September 2006

  1. Minutes from August 2006 were approved.
  2. Updates from the working groups

a. Developing countries working group

There was a discussion on the significant issues in conducting research in these countries and this discussion mainly focused on the broader definition of other developmental disorders. Contacts will be made with experienced service providers and researchers to seek their guidance. Initial contact will be made with a group working in India with the objective of holding meetings in India to discuss case definitions, service delivery and engaging support for autism research from local establishments and the government.

B. Registry based working group

The focus of this sub-group if to promote the application of registry-based research in countries where such registries are available. This can be achieved through enhancing autism research community’s knowledge and access to these registries, by providing an inventory of registries available in different countries and providing researchers with an assessment of the completeness and validity of these registries. Registries could also be linked with other databases (such as biobanks) to expand their applicability.

C. Services and records based working group

The focus of this sub-group is to improve the the understanding of the characteristics and prevalence of ASD using a population-based, multiple source methodology. The goal would be to develop a general model for determining cases of ASD that can be used world-wide, where feasible. A possible model could include:

— The collection and review of information from children’s evaluation records from medical, educational and social service agency records.

— Examination of these records for symptoms consistent with predetermined criteria for autism.

— A description of the characteristics of children and their families to permit comparison across sites.

— The ability to perform clinical evaluations of children in order to validate the records based approach to prevalence surveillance.

4. Development of a dedicated website for the Epidemiology Sub-committee


Conference Call

Autism Speaks/CDC Epidemiology Subcommittee

  1. Minutes from the December 2006 were approved with minor modifications.

It was agreed to create condensed minutes from past conference calls to be posted on the web site of the International Epidemiology Network so that new members can give an understanding of the history of the subcommittee.

2. Updates from the working groups

A. Developing countries working group

Uganda: US researchers made a request for support for a visit to Uganda to explore the possibilities for conducting research in this country. Autism Speaks will consider this request.

China: A copy of a mini-proposal from a Chinese research group has been distributed to several sub-committee members for comment. The researchers have been advised to submit the proposal via one of Autism Speaks’ regular funding mechanisms.

The point was raised that the subcommittee’s agenda of supporting research in developing countries does not fit well into the regular Autism Speaks funding mechanisms, therefore the subcommittee may want to create new mechanisms for these kinds of studies. It was agreed this topic should be discussed in more details at the pre-IMFAR network meeting.

b. Registry based working group

No new activities to report.

c. Services and records-based working group

The group was alerted to the forthcoming (Feb 2007) publication of the papers from CDC and the ADDM network describing new prevalence data on the autism spectrum disorders derived from a multi-site study.

d. Website and listserv

The approval for the use of the CDC logo on this site is nearing finalization and notice about the website will be sent to the listserv. (EPINET@autismspeaks.org)


Are YOU interested in collaborating with
Autism Speaks and the CDC?

Thank you for reading each of our proposed workgroup approaches to see which best fits your current or proposed research method and population under study. Now we would like you to become active with us by joining one or more of these workgroups. If you decide you would like to participate in our ongoing collaboration you can join the Autism Epidemiology list-serv by simply providing the following:




Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.


[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]


Fact: Vaccines Do Not Cause Autism.


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