The rising number of people in the United States diagnosed with autism spectrum disorder has increased the need for medical and social services to treat the complex condition. But the challenge is steeper, according to a new study of Medicaid beneficiaries from Colorado School of Public Health and Columbia University. It reveals that many children and adults with autism also need help for a variety of complicating neurological conditions.
The National Institutes of Health-funded study, published in the May issue of the Journal of Autism and Developmental Disorders, and co-led by Carolyn DiGuiseppi, PhD, MD, MPH, professor in the Department of Epidemiology at ColoradoSPH, examined some 993,000 individuals one year of age and older with autism who were enrolled in Medicaid programs in 2020.
Among its conclusions: these beneficiaries were far more likely to have “mental, neurodevelopmental, and neurological conditions,” or MNNs, such as attention-deficit/ hyperactivity disorder (ADHD), anxiety disorders, and intellectual disabilities, than those without autism.
A broader circle of need
As a result, DiGuiseppi and her co-authors write, “individuals who qualify for Medicaid based on their autism diagnosis are likely to need substantial services beyond those needed for autism, supporting resource allocation in Medicaid programs that accounts for this need.”
The findings also suggest that screening for ADHD and mental health disorders could benefit people with autism, including the large number of middle-age and older adults whose challenges have been underrecognized, DiGuiseppi said. For example, a dual diagnosis of ADHD and autism was not permitted until 2013, she noted.
“There has been very little exploration of older adults with autism,” DiGuiseppi said. But they deserve increased attention, she noted, not only because co-occurring conditions so commonly accompany an autism diagnosis, but also because they become more prevalent as people age.
“That can have a really significant impact on resources for Medicaid,” DiGuiseppi said. “[Adults] are going to have substantial service needs beyond what they need for their autism diagnosis.”
Addressing shifting needs of older adults and other groups
DiGuiseppi noted that the “exploding” number of autism diagnoses has “clearly concentrated” research among children and adolescents. But that increase also means that the number of adults with autism will continue to grow, along with questions about how their autism and other conditions might change as they age.
“One of the big issues we have with autism is we don’t have as much research across the lifespan,” DiGuiseppi said. “It’s something we really have to look at. How does it change over time or accelerate? What impacts do the conditions they encounter in childhood and adolescence have on their long-term health and wellbeing?”
DiGuiseppi and her colleagues noted other implications of the study, including the need for:
- Improved understanding of the characteristics, diagnosis, and management of autism in women and girls, among whom “the prevalence of every mental health disorder” was higher than in males.
- Systematic changes to bolster access to mental healthcare and treatment and reduce disparities among members of racial and ethnic groups.
- Screening for ADHD in adults with autism and for mental health disorders in both youths and adults from disadvantaged populations. Doing so “may improve health outcomes in this population.”
Looming challenges for Medicaid?
The study raises other important questions for the healthcare and social service systems, DiGuiseppi said. For example, people with autism currently can receive treatment for their condition through Medicaid waivers, even if they do not otherwise qualify for Medicaid benefits. But the rising number of autism diagnoses – many of them complicated by MNNs – also comes at a time of tightening restrictions on Medicaid eligibility, which include work requirements.
“If Medicaid continues to be reduced or is less available, does that mean it is going to be more difficult to obtain these waivers and more difficult to obtain care?” DiGuiseppi said. “It’s important that the system be allowed to continue because it is essential, given the co-occurring conditions that need treatment.”
Ultimately, the team’s Medicaid research focuses on autism as a condition that by itself places demands on people’s physical, mental, social, and educational needs. The frequent presence of MNNs increases those challenges, for individuals, the public health system, and the social safety net, DiGuiseppi concluded.
“Individuals who qualify for Medicaid based on the autism diagnosis are likely to need substantial services above and beyond those that they need [for that] diagnosis,” she said. “And that, given the rising prevalence of autism in the United States, has important implications for Medicaid.”
