2026 National Family Caregiver Survey
You know what caring for someone with severe autism takes. Congress needs to see it in numbers. This National Family Caregivers Month, families need more than awareness. They want action, and action starts with data. Your answers show Congress what caregiving costs, and what “appropriate” should mean in appropriate care.
Esther Kuchipudi, Joey Kuchipudi, and Daniela Guido at the U.S. Capitol during NCSA’s #AuthenticAwareness Autism Assembly, July 2026.
Data Drives Policy
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Policy Sets Services
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Take Both Surveys
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Ends Nov 30
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Data Drives Policy ✦ Policy Sets Services ✦ Take Both Surveys ✦ Ends Nov 30 ✦
Thirty-six multiple choice questions, about 5 to 10 minutes. It picks up where the 2025 survey of 1,289 caregivers left off. It measures caregivers’ hours, sleep, work, health, and finances. Many questions mirror ones in federal surveys of adjacent or broader caregiver populations. That gives a direct comparison for families caring for someone with severe autism, and a reason to open conversations with congressional offices.
Part 1 - 2026 National Family Caregiver Survey
Forty-six multiple choice questions, about 10 to 15 minutes. Its questions were driven by community request. It asks what is rarely, if ever, collected for any population. That includes who provides the care, who trains and manages the workers, what a lost person can communicate, and what happens when a family asks for help. It also asks how family caregivers are paid, so wages and stipends can be counted separately.
Part 2 - 2026 National Family Caregiver Survey
A bonus step, about 2 minutes. There is no comprehensive federal picture of the people who care for someone with severe autism, often around the clock and for decades. This campaign asks your members of Congress to direct a federal study of these caregivers’ health, economic security, and support needs. Enter your address, and the page matches you with your own officials. Add your experience.
Bonus Step: Contact Your Legislators
2025 Survey at a Glance
Families brought the 2025 data directly to Congress in July 2026 at NCSA’s #AuthenticAwareness Autism Assembly in Washington, D.C. That first data started new conversations. In 2027, the NCSA National Grassroots Network will use the latest surveys to show Congress, with greater precision, the challenges unique to family caregivers of people with severe autism. Download this one-page infographic, or visit NCSAutism.org/survey-results to see the full survey.
