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Statement on CDC Autism Monitoring Efforts

On April 22nd, 2015, the Autistic Self Advocacy Network issued the following statement regarding the CDC’s recent announcement as to the expansion of the Autism and Developmental Disabilities Monitoring Network (ADDM).

The Autistic Self Advocacy Network is concerned that the recently announced expansion of data collection and surveillance by the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM) will not include autistic adults. We believe that a focus exclusively on children does not accurately or adequately reflect the full breadth of needs and concerns of autistic people. If autistic adults are not included in prevalence data, needs such as transition, housing, and employment related services will not receive sufficient attention or funding. We encourage the ADDM to develop a fuller understanding of the needs of the autistic population by surveying the autistic population across the lifespan. This will determine areas of greatest unmet need as well as provide more nuanced and accurate data on prevalence across age ranges.

We would also like to encourage the CDC to continue monitoring data for further information about diagnostic disparities impacting communities of color and women on the autism spectrum. Existing ADDM data has already revealed that Black and Hispanic children are less likely to receive a diagnosis than white children despite the same prevalence across racial groups. As ADDM data may be used to allocate resources for services and programs supporting autistic people, it is critical to gather better demographic data about autistic people of color.

Furthermore, we are aware of significant diagnostic disparities that prevent in many girls and women on the autism spectrum from being identified and becoming eligible for necessary supports and services. ASAN encourages the ADDM to incorporate additional data collection items that will measure prevalence of autism among girls and women in order to provide a basis for re-focusing resources on improving diagnostic tools and meeting the needs of this underserved population.

 

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