Every August, parents across the country are bracing for the bittersweet. They’re loading cars with dorm room essentials, rehearsing goodbyes, and preparing for the particular ache of a house that’s suddenly too quiet. Eighteen years of firsts—first steps, first day of school, the first white-knuckled time in the passenger seat while teaching a teenager to drive—all leading to the moment every parent dreads and works toward: the day their child won’t need them in quite the same way.
For families raising children with profound autism, that day often never comes.
Those parents mark the same birthdays and celebrate the milestones that mark the passage of time, but adulthood for their children can look very different, with no college drop-off or first apartment. Instead, there is a harder question that becomes more pressing with each year that passes: Who will care for my child when I no longer can? Will she receive the support she needs to live with dignity?
Those questions become most urgent precisely when the system stops helping. The transition to adulthood is when school-based services end, when many children age out of pediatric practices where they have received care for years, and when adults with profound autism are handed off to a disability system that is currently defined by waiting lists, housing scarcity, and uncertainty. A caregiver who has spent two decades fighting for services for her minor child all but starts over once that child reaches adulthood.
This is the part of the discussion of adult autism that is too often unaddressed. The public conversation about rising rates of autism has been muddied by a legitimate but incomplete point: that some kids and adults now being diagnosed meet criteria due to better screening and broadened definitions.
But that doesn’t explain the rise in profound autism. A child who is nonverbal, who requires 24-hour support, who cannot live independently—that child does not go undiagnosed because clinicians weren’t looking carefully enough. At the same time rates of mild autism have risen, so has the prevalence of profound autism. It is not a question of diagnostic drift. Profound autism has seen a real increase, and it demands a real response.
The draft IACC Strategic Plan for 2026-2028, currently open for comment, takes many important steps in the right direction. The plan addresses housing supply, supported living, and what it names as caregiver succession—the question of what happens to an adult with profound autism when aging parents can no longer provide care. It acknowledges the current limitations of services and supports, which the plan describes as representing about 6% of the NIH autism research portfolio. Respite care—the support caregivers commonly name as their most urgent need—remains particularly underfunded, despite it being the difference between being able to continue home-based care versus institutionalization.
The plan also highlights the reality that, while behavioral interventions are important, children with profound autism are more likely than their peers who have had typical development to have physical health needs, and those conditions are systematically undertreated. Seizures, gastrointestinal disease and feeding disorders, and sleep disorders that destabilize the entire household. These are not incidental—they are central to what can make caregiving unsustainable, and left untreated can worsen behavioral symptoms that too often are managed with psychiatric medications rather than by addressing the underlying condition. The response needs to be a careful review of systems and medical workup, not simply an increased dose of an antipsychotic.
The plan comment period closes on August 20, 2026. If you are a clinician, researcher, parent, or anyone who has watched the system fail families, your voice belongs in the record. Comments can be submitted to IACCPublicInquiries@mail.nih.gov.
The parents loading minivans this month are experiencing something difficult, but it is something they and their children have worked toward and chosen. For the families who won’t ever have that choice—who are researching group homes and service waitlists and wondering who will care for their children after they are gone, the least we can do is build a system that doesn’t treat them as an afterthought.
