The Centers for Disease Control this week released the latest autism prevalence numbers, which suggest that approximately 1 in 59 children are autistic.
This represents an increase from CDC’s previous estimate, released in 2014, of 1 in 68. And it’s a truly remarkable increase over the 2007 estimate, which reported that 1 in 150 children — the periodic study focuses on eight-year-olds — were autistic.
As the release date for the new CDC numbers approached, conspiracy theorist Alex Jones blasted policymakers for “denying and refusing to tackle our nation’s staggering autism epidemic.” But such views were not hard to find echoed on social media, even from figures within the autism world:
There is no autism epidemic, however. The numbers are likely changing due to improved diagnosis and services, more inclusive diagnostic criteria and reduced stigma rather than a change in the actual number of autistic people.
They should absolutely not be used to give credence to discredited theories that, for instance, vaccines cause autism.
These findings are consistent with what previous research has told us – that autism likely exists in between 1 percent and 3 percent of the general population. These studies have shown a consistent range of autism prevalence across different populations, researchers and countries. Conducted both in the United States and in other developed countries, this research has found that there exists a large undiagnosed autistic population, particularly among older adults (who grew up before the modern understanding of autism), and among underserved
“I am glad the CDC’s autism prevalence rates are becoming more realistic,” said Shannon Rosa, editor of the Thinking Person’s Guide to Autism, a popular publication among both autistic adults and family members, “I hope wider understanding of what this data adjustment means will leader to more autism acceptance, as well as better autism services.”
Unfortunately, not everyone was so measured in their response. Talk About Curing Autism, an organization affiliated with the anti-vaccine movement, announced after the CDC report that “a prevalence rate of 1 in 59 cannot be ignored. Families are counting on us to act and support as we can no longer ignore this epidemic.”
The idea that autism represents a recent and unprecedented phenomenon is an article of faith among those parents who continue to believe that autism is caused by vaccines, despite a wealth of scientific evidence debunking the idea. Just as science has debunked the vaccine causation hypothesis, it also casts strong doubt that any autism “epidemic” exists.
Grasping that the numbers represent better identification of a population that has always existed should lead to important policy shifts. Rather than searching for the cause of a non-existent surge in the condition, we can focus on the needs of autistic people as a population long misidentified, or not identified at all.
Many autistic adults have gone through life without knowing why they are different, a deeply stressful experience. After decades of social isolation, underemployment or unemployment, and even homelessness, receiving a diagnosis that explains how your brain works can be truly liberating..
And if the rate of autism has long been stable, policymakers and funders should rethink the public response to autism. If rates are increasing, it follows that there are fewer autistic adults, relative to autistic children; if rates are not increasing, then adults are underdiagnosed. It’s the latter that’s likely to be true. Yet only about 2 percent of autism research funding goes towards the needs of adults.
A brief glance at Talk About Curing Autism’s sponsor list shows a dizzying array of companies hoping to sell pseudo-scientific “treatments” geared at “recovery” from autism. Those hawking such treatments depend on frightening parents into believing that their child has fallen victim to a terrifying new condition.
Autistic people have long criticized the heavy emphasis on trying to make us look and act like non-autistic people. The search for a “cure” or “recovery” has been profoundly harmful, often justifying abusive interventions. Even today, many autistic children are taught from a young age that hand-flapping, lack of eye contact or rocking —perfectly natural and normal mannerisms for autistic children — are inherently wrong.
A much sounder view is reflected in a statement on the new CDC numbers by the Autistic Self Advocacy Network (full disclosure: I co-founded that organization and ran it for 10 years, and currently serve on its board of directors) “Autism is not a bad thing, and autistic people—of all ages, races, and genders—have always been here… our data is beginning to catch up to that fact.”
Recognizing that autism prevalence has largely remained stable, even as our understanding of it has changed, means we can trade the urgency of a false public health crisis for the urgency of meeting the unmet needs of autistic people of all ages.
Analyzed properly, the CDC’s report includes some good news. For one thing, autism prevalence rates are rising in part because racial disparities in access to accurate diagnosis are closing.
In earlier CDC reports, white children were from 20 percent and 30 percent more likely than black children to receive an autism diagnosis, and about 50 percent more likely than Hispanic children to receive a diagnosis. Now, those gaps stand at 7 percent and 22 percent. More work remains to be done – but CDC’s data suggests that much of the increase is due to closing these diagnostic disparities. (There’s no reason to think there’s racial or ethnic differences in autism rates).
Research also suggests that non-white children are diagnosed at later ages than white children (There’s a telling inconsistency in racial disparities in diagnoses. Children of color are often over-diagnosed with learning disabilities and emotional disturbance — and then removed from general education.
Similarly, we know that there are significant diagnostic disparities by gender. These gaps were also narrowed in the new CDC report, though not by as much as race. CDC’s most recent prior report (in 2014) identified 4.5 autistic boys for every 1 autistic girl; that ratio narrowed to 4:1 in the new report. While some experts continue to believe that there are significantly fewer autistic girls than boys, a growing amount of evidence is showing that we continue to severely under-diagnosis autistic women and girls.
Prevalence estimates also varied tremendously on the basis of geography — with New Jersey having the highest estimates and Arkansas the lowest. This too should not surprise us — the difference in New Jersey and Arkansas’ infrastructure for diagnosis and service-provision is significant.
CDC’s new prevalence numbers should not be used for scaremongering. Rather, they provide valuable information on the need to better address diagnostic and service disparities among autistic children — by race and ethnicity, by gender, and by region. And by age: The CDC currently only studies autism prevalence in eight-year-olds, but has yet to act on calls to study prevalence in adults too.
When the Autism CARES Act comes up for re-authorization in Congress next year, that will provide an excellent opportunity to recalibrate resources to meet these priorities.
Meanwhile, the money spent by outside groups spreading alarmist concerns about an “autism epidemic” would be better spent on improving services for and protecting the rights of autistic people.
We’ve have always been here: The time has come to pay attention to what we have to say.
Ari Ne’eman is chief executive officer of MySupport.com, an online platform helping people with disabilities and seniors connect to workers. Before that, he co-founded the Autistic Self Advocacy Network and ran the organization from 2006 to 2016. From 2010 to 2015, he served as one of President Obama’s appointees to the National Council on Disability. He is currently writing a book on the history of disability in America.
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