Health providers must advance and adapt to care for individuals on the autism spectrum, experts said in a U.S. News webinar.
Supporting individuals on the autism spectrum takes a village, and hospitals across the U.S. are playing a big role in coordinating that, according to a panel of experts who participated in a recent webinar hosted by U.S. News & World Report.
About 1 in 36 children in the United States are diagnosed with autism spectrum disorder, according to the most recent data from the Centers for Disease Control and Prevention, an increase from 1 in 44 two years ago.
“Likely, this does not mean that there’s more people with autism. This likely means that we’re better at diagnosing,” said Dr. Lauren Donnelly, clinical director of the Autism Spectrum Disorder Research and Clinical Program and a clinical associate professor at Hassenfeld Children’s Hospital at NYU Langone.
Donnelly attributed some of that to advances in diagnosis among underserved communities and girls, in particular, as they are less likely to be diagnosed with autism compared to boys.
As the population of children diagnosed with autism grows, the need for more robust care and support services becomes that much more pressing. Unfortunately, many health care systems across the country face a “massive workforce shortage of individuals and professionals who understand and can meet the needs” of autistic patients and their families, said Dr. Kristin Sohl, a professor of clinical child health at the University of Missouri and founder and executive director of ECHO Autism Communities, a virtual network connecting caregivers and professionals with behavioral and autism experts. That challenge can be exacerbated because autism can be so different for every individual, and because it is often characterized by other medical conditions like gastrointestinal disorders, psychiatric comorbidities, depression, anxiety and more.
In face of a dearth of specialists, all hospitals and health systems should have the capacity to offer informed and quality treatment, as “every child with autism should be seen as a child first and therefore not as an anomaly,” Sohl said. In an effort to help, ECHO Autism has employed telementoring and a range of digital educational resources to reach and teach non-specialized providers.
Providing more education for clinicians and others to better serve those on the spectrum is indeed a high priority, said Dr. Holly Harris, a developmental and behavioral pediatrician at the Meyer Center for Developmental Pediatrics and Autism at Texas Children’s Hospital.
The rise of telehealth during the pandemic went a long way to filling some of these gaps in care and reaching “a much broader range of people – and more people,” Donnelly added. However, panelists agreed that the medical community has still only scratched the surface of the use of more digital modalities in autism care, and questions of access and equity must also be considered.
Health care providers and community support programs must also adapt and evolve as individuals age, speakers noted, given that autism is most often a lifelong condition. “There’s, frankly, just a very distinct kind of drop” in available services and providers for those aging out of childhood, Harris said. To help, she highlighted the importance of having conversations with families early on.
“There are many transitions along the childhood and and youth trajectory,” she said, “and then, yes, there is this big transition at 18. Starting that discussion very early is extremely helpful and important.”
Still, for Dr. Andy Shih, the chief science officer of the nonprofit research and advocacy organization Autism Speaks, such efforts still have a ways to go.
“It feels like when we talk about lifespan solutions right now, I think truthfully, we’re only talking about half a lifespan.” By way of example, he asked: “What does an autistic adult with dementia look like?” highlighting the lack of consideration and specialized support that those on the spectrum come up against as they age.
Also vital among all of these approaches: listening to autistic people about their experiences, panelists said. Providers and organizations might go a step further in their care approaches by enlisting individuals who are themselves on the autism spectrum, who are too often overlooked as a source of support. Indeed, by treating them as an “equal collaborator” in problem-solving, we might see solutions with a “better chance of being sustained in the community setting,” Shih said.
Sohl agreed, adding: “There’s actually a lot of innovation to be had around engaging both caregivers and autistic adults in this space.”
Source: US News
