As the definition of autism has widened, there's been a growing push to create a new diagnosis, called profound autism, for those who need constant and lifelong care.
The reason? To ensure that they get the support and services they need.
Judith Ursitti, president of the Profound Autism Alliance, said people in this category now lack appropriate treatments, support and enough providers trained to handle their level of care. And the vast majority of clinical research doesn't include them.
''If you don't have research, you won't have treatments. You won't have achievable services and supports,'' said Ursitti, whose adult son has profound autism. ''There are people across the spectrum who have high support needs that are intermittent. The difference with our population is they're constant.''
Autism rates have been rising for decades, and two of the main reasons for the increase have, in a strange twist, taken some of the focus off of helping people with round-the-clock needs. The diagnosis of autism spectrum disorder is now very broad, including many people with low support needs. Also, better awareness of the condition has helped many more children get diagnosed than in the past — and most of those cases are relatively mild.
At the same time, the Trump Administration is promoting unproven and debunked claims about what causes autism, which experts say muddles efforts to understand the condition and fuels misinformation that threatens public health, even as officials funnel more money into research.
Overall in the U.S., an estimated 1 in 31 children has autism spectrum disorder.
Researchers estimate around a quarter have ''profound autism,'' a term introduced in 2021 by a group of experts, the Lancet Commission. It describes people who need constant care for life, have a certain level of intellectual disability and are nonverbal or minimally verbal.