2025 Family Caregiver Survey Results
A nationwide survey of parents and caregivers of individuals with severe autism. Designed by the Planning Committee of the NCSA Voices for the Voiceless national legislative initiative.
(n=1,289)
Autism caregivers are aging.
More than 65% of respondents fall between the ages of 45 and 64—the largest concentration in the 55–64 bracket. This is consistent with epidemiological data showing a rapid rise in autism prevalence beginning in the late 1980s and early 1990s.[1] Policies around respite care, adult services, and long-term supports must account for a caregiver population that is aging alongside its loved ones.
(n=1,289)
More than one in ten caregivers support multiple loved ones with severe autism.
135 respondents (over 10%) care for two or more individuals with severe autism: 110 caring for two, 13 for three, 2 for four, and 12 for five or more. Policies and funding streams often assume one caregiver to one individual. These families need resources that reflect their multiplied demands and heightened risk of burnout.
(n=1,236)
Nearly three-quarters are still living in the family home.
74% of individuals with severe autism live at home—either by family preference or because no other option exists. 15.8% of families report caring at home specifically because other placements or staffing are unavailable. These families are effectively serving as the service system.
(n=1,236)
Only one in five families has reliable in-home support.
Just 21% report consistent, reliable in-home staffing. 27% have actively tried and cannot access staffing at all. Families fill the gap themselves, risking caregiver burnout, health crises, and the collapse of the only care infrastructure their loved one has.
(n=1,096)
Only 1 in 6 families believes the current arrangement is sustainable long-term.
Half (50%) say the current situation cannot continue long-term. Another one-third are unsure. Fewer than 17% say yes. This is not uncertainty—it is a systemic crisis unfolding in slow motion, one caregiver at a time.
(n=1,041)
Nearly two-thirds have faced a behavioral or psychiatric crisis requiring outside intervention.
63% of families report their child has experienced a behavioral or psychiatric crisis requiring emergency or specialized intervention. This underscores the urgent need for robust crisis services, trained first responders, and community-based supports specifically designed to prevent repeated crises.
(n=1,041)
When crisis hits, only 14% say the response was fully appropriate.
Among families who experienced a crisis, only about 14% say the response was fully appropriate to their child's disability needs. 24.9% found it only somewhat helpful. 19.4% found it not helpful at all. Too few crisis responders have the specialized training this population requires—and families are paying the price.
(n=1,008)
Nearly 8 in 10 families have been told their child is “too severe” or “not a good fit.”
This is not a gap in services. It is explicit rejection. 79% of families have been turned away—told directly that their child’s needs exceed what providers will accept. Families are not struggling to navigate a complicated system. They are being shown the door.
(n=1,008)
Over half have been discharged from a provider because of behavioral challenges.
54% of families have lost services not because their child improved, but because the provider could not or would not accommodate their needs. This reflects a systemic failure to train and support providers working with the highest-needs individuals—and a policy environment that tolerates that failure.
Families urgently need staff with advanced training across multiple high-risk areas. The demand is not for generalist disability workers—it is for specialists capable of managing behaviorally complex, physically challenging, and medically intricate situations. 15% of families report they cannot find appropriately trained staff at all.
(n=1,008)
(n=988)
Only 12% of families have a concrete plan for when they can no longer provide care.
Nearly half are still figuring it out. Nearly a third have no plan at all. One in eight does not know how to begin. Three-quarters of families—76%—are navigating an uncertain future with no clear path forward.
Families rated their concerns about their child's future on a 5-point scale (1 = not concerned, 5 = extremely concerned). The three highest-rated concerns each had a weighted average above 4.6 out of 5. Percentages below reflect the share of respondents who selected “5 — Extremely concerned” for each item.
Families Need Systemic Change—Now
It’s time to invest in safe housing, trained staff, and long-term planning supports so families are not left to shoulder these challenges alone.
[1] Maenner MJ, et al. “Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.” MMWR Surveill Summ. 2023;72(2):1–14.