March 24, 2023
Source: Autistic Self Advocacy Network (ASAN) Blog
Today [March 23, 2023], the Centers for Disease Control [CDC] released the Autism and Developmental Disabilities Monitoring (ADDM) Network report. This report estimates how many autistic 8-year-olds there are in certain areas of the country. The report shows that better recognition of autism and continued efforts to reduce racial and gender disparities have caused rates of diagnosis to continue to rise. However, there is still more work to do to address the remaining disparities in diagnosis, and more work to do to ensure autistic people in all communities receive the support we need.
The report released today uses data gathered in 2020. This research reviewed records of 8-year-old children in 11 communities across the United States. The report released today shows that the rate of autism diagnosis has increased to 1 in 36 children or 2.8 percent of the children surveyed. This is an increase from earlier reports, which estimated that 1 in 44 children were diagnosed with autism.
ASAN is not surprised to see the diagnosis rate increase. We believe this increase reflects better recognition and diagnosis of autism across the U.S. We know that many disparities in diagnosis have become smaller. We know that children were evaluated earlier in some places and later in others, and believe that the differences in rates seen between different ADDM sites reflect that these disparities still exist. We expect that diagnosis rates will continue to rise as we work to address diagnostic disparities and improve access to diagnosis and support.
Looking at 4-year-olds with a diagnosis, the ADDM study also found an increase in the identification of autism by age 2. Improvements in early identification make it even more critical that parents receive accurate, non-stigmatizing information about autism upon diagnosis. It is vital for families to receive information about what types of services are available to autistic kids. Too often, families are pushed towards [Applied Behavioral Analysis or] ABA and other behaviorist approaches to early autism intervention, even though many autistics have found these approaches unhelpful and harmful. As early identification increases, health insurance companies must cover services besides ABA for autism. Our toolkits on health insurance coverage contain more information on how to make that happen.
At the same time, while early identification had continued to improve, these gains primarily occurred before the COVID-19 pandemic. The ADDM study also found that the impact of COVID-19 on screening and identification was substantial and reversed these early trends. Because of the pandemic, people had less access to screenings, services, and supports, which has meant that children have received fewer diagnoses since the start of the pandemic. These children still exist and are still autistic, but it will be even harder to get the support that can help them most. It is essential that we make sure that people are connected to services and supports that they did not have access to during the pandemic.
The report also reflects improvements in identifying and addressing racial disparities in diagnosis. For the first year since the start of the ADDM study, people of color were identified with greater frequency than white people. This likely reflects long-term efforts to reach communities of color and improve access to early identification and services. However, some diagnostic disparities remain and continue to be an issue for autistic people of marginalized races, ethnicities, and genders. As in prior years, the report showed that Black children were more likely also to be diagnosed with an intellectual disability compared to white or Hispanic children, reflecting a longstanding history of racism in how Black children with disabilities are labeled. In addition, children assigned female at birth were less likely to be diagnosed than children assigned male at birth. Researchers, clinicians, and policymakers must continue to work to end these disparities and remove bias from the diagnostic process.
ASAN has previously noted the importance of providing additional data on older autistic populations. Earlier this year, for the first time, the ADDM study has included information about teenagers up to the age of 16 for five of their locations, including information on their diagnoses, support needs, and transition planning for adulthood. ASAN welcomes these efforts to follow and understand the experiences of autistic individuals across the lifespan and through adulthood; this information is crucial to demonstrating that we are still here throughout adulthood, and understanding our support needs as we age. It is also important for understanding the experiences of those who are diagnosed later in life; 11.6% — more than 1 out of 9 — of people identified in this older study group were diagnosed after age 8.
The ADDM report indicates that our diagnosis practices are starting to reflect the diversity of the autistic community. While the challenges posed by COVID remind us that we will continue to need to work to improve access, it is good news that many autistic people who have been overlooked in the past can increasingly get the recognition and support they need.
About Autistic Self Advocacy Network (ASAN)
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!