MEDINA, Ohio — The U.S. Department of Health and Human Services announced Wednesday new plans to research the causes of autism using data from Medicare and Medicaid.
“We’re pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr. said in a statement.
While the debate over the cause of autism has heated up, there's another issue that's slowing down families from connecting with resources: Long waiting lists for an appointment with a specialist, just to obtain an autism diagnosis.
When Conall Smyth of Wooster was about a year old, his family started investigating to see if Conall was developing autism.
"He was a very happy baby, very interactive and very clever," mother Dierbhile Smyth said. "Literally overnight, [he] regressed and when back in on himself and emotionally wouldn’t engage. He had two or three words, they went completely. All eye contact was gone. All hugs were gone, all of that emotional connection disappeared over a week."
From there, she said she was guided toward seeing if a specialist would diagnose Conall with autism.
"It was between 12-18 months we were on the list waiting," Dierbhile said. "It was a long process, and you need the diagnosis to move forward with a lot of things and a lot of therapies."
Conall ended up receiving the diagnosis when he was three years old, which his mother said was a huge relief for the family.
"You keep hearing early intervention is so important, and you’re watching the months tick by, and you feel, 'am I losing time here?'" Dierbhile said. "I think that timeline for identification and diagnosis is something that really needs to be looked at."
Study after study agrees and points to early intervention, even before the age of 2, as having “major long-term positive effects on symptoms and later skills.”
"Early intervention is huge," Cierra McPeak, clinical director at Bluesprig in Medina, explained. "It really changes the trajectory of independent life outcomes not only clients but their families. You want to work on these core foundational skills as the child is growing and developing and building up these skill sets rather than 4 years down the road when it's more instilled."
McPeak, who oversees Conall's applied behavioral analysis, or ABA therapy, explains that wait time has not gotten better.
"You wouldn’t have an autism diagnosis from a pediatrician, you would need to move forward to a specialist, and that can take some time to get into a specialist," she said. "In Northeast Ohio, minimum a year. There’s a lot of need, and there’s only certain specialties that can diagnose."
News 5 spoke with Kathi Machle, board president for the Autism Society of Ohio, who confirmed that they're seeing similar long wait times across the state.
Health and Human Services Director Robert F Kennedy Jr. has said he hopes to find a cause of autism by September.
"Autism is increasing in prevalence at an alarming rate," he said during a news conference last month.
"Autism deserves to be treated as a real public health phenomenon and an urgent public health crisis," Walter Zahorodny, with the New Jersey Autism Study, said at that same event.
While much of the debate across the country focuses on the potential causes and the rising number of those diagnosed, those here believe there needs to be more focus on how quickly families can get that diagnosis, what happens next, and the resources that come after.
Since Conall started coming to BlueSprig nearly two years ago, Dierbhile sees the difference time can have.
"Within six months of here, we’ve just had such hope for his future," she smiled.
Dierbhile added that she hopes to see Conall in school, ideally this fall.
"If you are getting those little emotional connections, they’re huge wins."
Clay LePard is a special projects reporter at News 5 Cleveland. Follow him on Twitter @ClayLePard, on Facebook Clay LePard News 5, or email him at Clay.LePard@WEWS.com.
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