The CDC’s reported autism prevalence rate is now 1 in 36, an increase from the 2021 reported rate of 1 in 44. These new numbers are a good thing; they mean we are getting better at identifying autistic kids who are already here, but who were getting overlooked. These new numbers represent autistic children who were not able to access the services and accommodations that the government is legally obligated to provide, and were not getting acceptance or understanding from the people in their lives. (Note that the CDC has yet to do a prevalence study of autism in adults.)
You may see some claims that these new numbers mean we have an autism epidemic. This is not true. The 1 in 36 numbers are about the CDC’s Autism and Developmental Disabilities Monitoring Network getting better at finding and diagnosing existing autism, not that there is actually a higher rate of autism than in previous reports.
When you see claims about an “autism epidemic,” it is helpful to look at who is making those claims. Usually such claims come from news or media outlets that are trying to sell stories, or from parent-led organizations that focus more on eliminating autism than on supporting autistic people. These are not good sources for understanding autism information, and you should let people who have questions about the new 1 in 36 rate know about better resources, like The Autistic Self Advocacy Network (ASAN). Shortly after the CDC’s announcement, ASAN released a statement on the new prevalence numbers, advising “that [autism] diagnosis rates will continue to rise as we work to address diagnostic disparities and improve access to diagnosis and support.”
We feel it is more helpful to turn an “epidemic” phrasing sideways, as Dena Gassner and John Elder Robison do in framing the new numbers as representing an “epidemic of need“:
“Wealth, race, or cognitive/educational privilege should not be the deciding factor predicting who survives and prospers in living an autistic life. The rising autism numbers presented by our CDC should be a wake-up call — there are a lot of us, and what’s truly increasing is the cost of ignoring our needs.”
It is also important to note that Gassner’s and Robison’s framing echoes that of the CDC report itself, which states:
“These data indicate that ASD is common across all groups of children and underscore the considerable need for equitable and accessible screening, services, and supports for all children.”
This is not the first time we at TPGA have addressed rising CDC autism prevalence rates with a call to “keep calm and think critically about what these readjusted numbers actually mean.” When autism prevalence rose to 1 in 68 in 2014, and then 1 in 59 in 2018, we were one of many voices emphasizing that “’autistic people—of all ages, races, and genders–have always been here’; we just need to get better at finding them.”
While we welcome increased detection and recognition of autistic children, it is only the first step towards addressing what those autistic people need to thrive. Specifically:
- Federal funding for educating disabled children has never been fully delivered, further disadvantaging autistic students in school districts that cannot rely on supplementary resources like community or local government funding.
- What limited education funding exists tends to be allocated to students who disabilities are more obvious—that is, the autistic children with intellectual and communication disabilities, or more pronounced traits, who were not overlooked in previous CDC reports.
- ABA therapy and related normalization-based therapies continue to dominate the supports space for autistic children, which contorts those children into miserable marionettes, rather than teaching them and their families and support teams what they need to thrive as autistic humans.
- Very few resources exist to humanely and compassionately support autistic children at all, let alone those who aren’t boys (AMAB or assigned male at birth), or who come from marginalized racial or socioeconomic communities, or from outside English-speaking cultures.
- And, as autistic children grow into autistic adults, we need a similar study for older cohorts, to identify and support autism in those who who meet the current diagnositic criteria and were never diagnosed, but who also desperately need supports.
For a more detailed examination of the new report, we recommend reading ASAN’s statement. And we must emphasize that until we get better at meeting autistic needs in addition to identifying who the autistic children are, struggles for autistic people of all ages will continue.