There's a scenario that plays out, quietly and repeatedly, in households across the country. A parent of a young autistic child spends hours each week on the phone — scheduling evaluations, chasing referrals, navigating the gap between what the pediatrician recommends and what insurance will cover. Eventually, the math doesn't work anymore. The hours it takes to manage their child's care exceed what can be done alongside a full-time job. Someone stops working.
This isn't anecdote. It's a measurable, quantifiable pattern — and new research makes clear just how large the gap is between families who get help navigating the system and families who don't.
Among caregivers of autistic children ages 3–5 who did not receive needed care coordination, 59% reduced their work hours or stopped working entirely — nearly triple the rate of those who got the help they needed.1 That figure is not a minor variation. It describes a fundamentally different life trajectory for families who are, in most other respects, comparable. Same diagnosis. Same age child. Different outcome — based almost entirely on whether someone helped them coordinate their child's care.
What Care Coordination Actually Means
The term can sound abstract, but the function is concrete: a care coordinator helps families connect across the many professionals and systems involved in an autistic child's life — behavioral health, pediatric care, schools, insurance, and therapies. For a child who may be seeing five or six specialists while also navigating special education services and waitlists for applied behavior analysis, that coordination isn't optional. It's what makes the rest of it possible.
Without it, the coordination work falls to the family. And that work takes time — often more time than a parent can absorb without something else giving way.
The families most likely to bear this burden are already facing the most barriers. Younger children require more intensive coordination — they're often in the thick of early diagnosis, early intervention decisions, and insurance disputes over whether therapies are medically necessary. These early years are where caregiver employment disruption is most severe, and where effective coordination would have the greatest return.
Why This Matters Beyond the Individual Family
Caregiver workforce exit has consequences that compound over time. Lost income, reduced retirement savings, career interruption — all of these affect household financial stability for years, sometimes permanently. Autistic children are already more likely to grow up in lower-income households;1 when a caregiver stops working, that gap widens.
There's also a policy paradox worth naming directly. Public insurance — Medicaid, CHIP — appears to protect families' employment mobility in ways private insurance does not. Families reliant on employer-sponsored coverage are, in a real sense, locked in place: they can't change jobs, can't pursue a better opportunity, because losing their current insurance would mean losing their child's access to care. The system designed to support children with complex needs inadvertently traps the adults caring for them.
Families with both public and private insurance who didn't receive needed care coordination were among the most affected — showing both the highest rates of reduced work hours and the highest rates of avoiding job changes to maintain coverage.1 When a child needs dual coverage to manage complex care, every employment decision becomes a healthcare decision too.
What Could Actually Help
The evidence points toward a few concrete directions.
Invest in care coordination as infrastructure, not an add-on. Care coordination is currently underfunded, inconsistently available, and poorly reimbursed. When it works, it reduces caregiver burden and keeps families in the workforce. A cost-benefit analysis that accounts for caregiver employment outcomes — not just direct medical costs — would likely show a strong return on public investment.
Expand and stabilize public insurance coverage. The evidence is consistent: families with public insurance experience less employment disruption. Medicaid waivers, Buy-In programs, and Medicaid for children with disabilities provide a floor that private insurance, with its job-lock dynamics, cannot. Protecting and expanding these programs is, among other things, a workforce policy.
Bring schools into the care coordination picture. Employment disruption decreases as autistic children get older — partly because schools absorb some of the coordination function. School psychologists, nurses, and special education coordinators are doing care coordination work, often without it being named or resourced as such. Formalizing that role and connecting it more explicitly to healthcare could meaningfully reduce caregiver burden during the school years.
Reach families earliest. The youngest children represent both the highest risk and the highest opportunity. Early diagnosis pathways that include systematic care coordination support — not just a referral list — could prevent the employment disruptions that follow.
The Bigger Frame
What the data ultimately describes is a system that places a heavy administrative burden on families, then measures the consequences as though they were personal failures rather than policy choices. The parents who leave the workforce to manage their child's care aren't doing so freely — they're doing so because the alternative is a child whose needs go unmet.
Care coordination is a claim that we can do better. The gap between families who get that help and families who don't is not a small one. It's the difference between 21% and 59%. Between staying in the workforce and leaving it.
That gap is a policy choice. It can be made differently.
1 Jaffe, A.J., Roux, A.M., Anderson, K.A., Vasudevan, V., Esposito, A., Spielman, S., & Rast, J.E. (2026). Caregiver employment changes and care coordination in families with children with autism. Research in Autism, 135, 202930. https://doi.org/10.1016/j.reia.2026.202930