1 in 88, 1 in 70, what does it all mean?

On March 29, just two days before the beginning of Autism Awareness Month, the Centers for Disease Control and Prevention (CDC) released new figures for the prevalence of autism. While no one expected a decrease, the new rate of 1 in 88 nationally (up from 1 in 110 in two years) and 1 in 70 in North Carolina (up from 1 in 97 in two years) are significant and have gathered a lot of media attention. How legislators, policymakers, and the public will respond to and make decisions with this new information is important.

Some have questioned the validity of the new data, but the numbers are real. The CDC used researchers at the Autism and Developmental Disabilities Monitoring (ADDM) Network in 14 sites across the country to conduct the surveillance studies. The ADDM has been reviewing data for nearly a decade and their methods for determining prevalence are detailed on the CDC’s Data and Statistics page. Here’s a great graphic from the CDC’s website that shows how prevalence has increased between 2000 – 2008.

Eleven counties in North Carolina were monitored by the North Carolina ADDM team in the most recent surveillance study. Their research showed that the prevalence numbers for NC were 1 in 70, well above the average prevalence of 1 in 88 across all sites. Is there clear evidence of increased prevalence in our state? Yes, and members of the autism community have been saying this for years. All one needs to look at is the NC Statistical Profile, an annual survey conducted and compiled by the NC Department of Public Instruction.

The Statistical Profile is “A collection of statistical information about North Carolina’s elementary and secondary schools. The profile provides data on public school pupils, personnel, and finances.” ASNC has monitored a section of this annual document titled “Pupils in Membership Being Served by Exceptional Children Programs” for many years. In 2000, the total of students categorized as “AU” was 2,613. In 2008 the total was 8,233, and increase of 5,620 or 215%. In addition, the number of students with ASD increased on average by 14-17% while the total statewide student population averaged a 2-3% gain during the same period. (For reporting year 2009-2010 the total number was 10,664 – Source link)

Schools are just one area that ASNC has seen evidence of increased prevalence. Another is through a jump in the number of local chapters and parent support groups throughout NC. In 2000 there were approximately 20 local Autism Society of North Carolina chapters or parent support groups that met regularly. These groups offered an opportunity for parents to connect and support each other locally. Now there are nearly 50 chapters across North Carolina. As more children are diagnosed, families are reaching out to each other and ASNC for support and resources.

This brings us back to a very important quote from the CDC report… “ASDs continue to be an important public health concern in the United States, underscoring the need for continued resources to identify potential risk factors and to provide essential supports for persons with ASDs and their families.” The CDC and DPI data definitively show that there are more individuals on the autism spectrum in North Carolina than ever before (the estimated overall number of individuals with ASDs in North Carolina is at least 60,000). Having the necessary resources for appropriate early intervention, education, vocational training, transition planning, and community supports are essential to the success of individuals on the autism spectrum.

So what does it all mean? With greater prevalence there is an opportunity for increased awareness and acceptance. There also must be greater action to provide and protect support services for individuals on the autism spectrum and their families. How will that happen? The Autism Society of North Carolina (ASNC) will continue to make the case to the Legislature, education leaders, and other state decision makers to continue to maintain and expand support for individuals with autism. ASNC will also continue to educate the public and work to increase understanding of autism so that individuals on the autism spectrum are able to fully participate in their communities. In order to accomplish these goals, ASNC needs your involvement and support in our efforts to ensure that our collective voice is heard.

The numbers don’t lie. They just illustrate what those of us in the autism community already knew: that directly or indirectly, autism affects all of us.

Helpful links:

• Prevalence of Autism Spectrum Disorders (Full Study) – http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

• Centers for Disease Control and Prevention Autism Spectrum Disorders Data and Statistics Page – http://www.cdc.gov/ncbddd/autism/data.html

• North Carolina Department of Public Instruction Data and Reports section – Statistical Profile page – http://www.ncpublicschools.org/fbs/resources/data/

• Statistical Profile Online – Table 9 Pupils in Membership Being Served by Exceptional Children Programs – http://apps.schools.nc.gov/pls/apex/f?p=1:14:127803667733902::NO:::

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