April is Autism Acceptance Month. The recognition of autism in the month of April has a long history. All the way back in 1970, the Autism Society of America launched a national campaign to raise awareness. Back then, autism was considered a rare childhood disorder and diagnosis data wasn’t collected on a national level. In 1970, a psychiatrist based in Wisconsin conducted a population-based study of the prevalence of autism – the study showed about 3 out of every 10,000 children met the criteria for autism. The national number today is 1 in 31 children, according to the CDC.
Dr. Susan Averitt is a pediatrician based in Arkansas who works with HealthySteps, the statewide program that helps to screen for autism and other developmental delays. She says that the shift from Autism Awareness Month to Autism Acceptance Month is useful.
"I think people are becoming more accepting of the fact that it is a spectrum and that what autism is, and the way that we see autism, has changed."
Autism as a diagnosis first shows up in the first edition of the Diagnostic and Statistical Manual in the early 1950s. Early diagnoses connected the condition to mental illnesses like schizophrenia. The DSM-5, published in 2013, widened the characteristics and conditions to be diagnosed.
"I think just the very core definition of what autism is has changed so drastically, and our understanding of it obviously has evolved as well. It has gone from the most severe patients being nonverbal and not able to support their activities of daily living without full support, to the level one diagnosis now, where patients require different levels of support — the level one patients requiring some support, whereas it gets more and more significant as the levels increase."
For decades, screening for autism happened with infants and toddlers and was diagnosed at a young age. Averitt says one way she is seeing the shift from awareness to acceptance is in the desire for people to ask for an assessment on themselves.
"I have seen some children and teenagers and young adults who understand themselves better knowing that they're on the spectrum than before they did. They didn't quite have language or a thought process on how to describe their differences in the way that they saw themselves from their peers. I feel like there are a lot of people who get peace of mind from that diagnosis, which I wouldn't have thought, 10 or 15 years ago, would be the case."
She says she has heard from patients that getting the diagnosis can be less about acceptance from other people and more about self-acceptance.
Even though about 3% of children are diagnosed on the autism spectrum, that doesn't mean acceptance is prevalent. Stigma still exists, and Averitt says she still sees parents who aren't willing to have their children assessed for autism.
"The response is also a spectrum, but culturally, there are probably still some cultures where it might be more stigmatizing. And I think sometimes there's an element of denial that there might be anything 'wrong' with my child."
Ultimately, it's the availability of services and resources that a child needs. She says when a young child is already receiving services like speech therapy or occupational therapy, they may be able to get more intensive services to help, too.
"And so in order to get those services, they're more motivated to get the diagnosis. I think when people do come forward to have their child evaluated, they are suspicious enough that they are not in the headspace of rejecting the diagnosis at that point."
It's worth disclosing this far into my reporting that autism is something personal for me. I have a brother two years older than me who was diagnosed with autism at the age of 2. And while he has had therapies and treatments and services for four decades, he will forever have autism. Perhaps that's why I find the language of "autism acceptance" fascinating — because my brother has always had autism and will always have autism. Averitt says it's important to also be willing to accept that there are things to do that can help you get skills and tools, regardless of your age.
"By the acceptance of the diagnosis, then you can accept the treatment, therapies and modalities better, too. Because I see kids who are 8, 9, 10, 11, and I can remember what they were like when they were 3, 4 and 5, and how much progress they've made — and it doesn't make them no longer on the spectrum. But even within that individual person, there's a spectrum of severity. And there's this ability for them to change levels. If they need less support as they get older, it's not something we're trying to cure them from."
Averitt says when it comes to growth and development, a specific patient comes to mind for her.
"Who's about 8 or 9 now, and he's doing so well in school, and the kids love him, and he's made lots of friends — and just how hard he worked going to daycare. He got diagnosed when he was about 3, 3 and a half, and started getting intervention and services. His parents advocated for him. I didn't know what school was going to be like for him, but it's been a much better experience than I think it would have been if he hadn't had that early intervention and social training that he was able to get at an early age."
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