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Local autism community: Stop alarmist rhetoric

Brandon Paykamian • May 6, 2018 at 3:42 AM

Some mental health experts and disability advocates believe a reported spike in autism statistics has more to do with improved diagnostics rather than an actual rise in autism.

The Centers for Disease Control and Prevention released a report last Thursday focusing on 8-year-old children, which said 1 in 59 children were identified as having autism in 2014, compared to 1 in 68 in 2010 and 2012.

Courtney Johnson, an organizer with the East Tennessee State University Neurodiversity Club who also has autism, said she believes CDC researchers are correct when asserting that much of the increase in numbers is partly due to the narrowing of racial disparities in autism diagnosis.

Johnson and others believe the true numbers could probably still be higher than the current figures, citing those who go undiagnosed.

“I feel like the numbers are just finally starting to catch up with what's been the reality for a very, very long time,” she said. “Honestly, it just means that we're getting better at noticing and diagnosing autism, especially in marginalized communities that are often overlooked in autism research and popular culture.”

Johnson said she has been disappointed with the response of some who see the numbers and immediately draw “alarmist” and often ableist conclusions. After the numbers were released, she and others from the ETSU Neurodiversity Club and Autistic Self Advocacy Network have been vocal against the response many neurotypical people have had to the CDC numbers.

“Since the CDC released the new data, I've seen a rise in people shouting about how autism is an ‘epidemic’ and that autism is ‘ruining our lives,’” Johnson said. “Many of my friends who are on the spectrum are very stressed out, because there's been a sharp increase of people telling us how much of a burden they are, especially for my friends who are nonspeaking or unable to ‘pass’ as neurotypical.

“People talk about how autism is this horrid disease to cure, and that we are just broken and empty shells of a person that was once there,” she added. “It's honestly exhausting when you hear these things on a nearly-daily basis.”

Groups such as Johnson’s and the Autistic Self Advocacy Network generally oppose the rhetoric of groups that primarily advocate for a “cure,” and many in the community have witnessed a spike in theories about what causes autism, reigniting a debate about vaccination among some in the public once again.

“Autism is not a bad thing, and autistic people — of all ages, races and genders — have always been here. The CDC’s research shows that our data is beginning to catch up to that fact. We encourage researchers, advocates and the general public to join us in using this new data to ensure that all autistic people are accepted, included and supported in our communities,” the ASAN said in a recent statement about the CDC numbers. 

Local advocates for people on the spectrum have joined Johnson in combatting alarmism after the release of the CDC statistics.

“While the rate of autism is increasing among 8-year-olds, the actual cause of such an incidence has not been defined or is known. While there are often reasons suggested for this cause, the fact is that there is no defined cause for autism,” Melissa Cole, a behavior analyst and member of the Autism Society of East Tennessee, said. “Accordingly, it is not correct to link any suggested cause for this increase.”

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