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Special Education Survey

Understanding Special Education Experiences of People with Profound Autism


This survey is for caregivers of people with profound autism.
(Note: Profound autism means a person diagnosed with autism who requires lifetime, 24/7 care.)

People with profound autism require round-the-clock support across home, school and community life. We are trying to understand whether students with profound autism are receiving meaningful access to special education services.


This survey is for informational, research and advocacy purposes only. It is not legal, medical or educational advice. Please do not include your child’s full name, school name or other identifying details in open-ended answers.

Responses may be summarized and shared in de-identified form with policymakers, federal agencies, advocacy partners, researchers or the public. We may use de-identified quotes or themes from responses in reports, presentations or advocacy materials. Participation is voluntary, and you may skip any question. Contact information, if provided, is optional and will only be used for possible follow-up.
Are you the parent, guardian or primary caregiver of a person with profound autism?
What is their age?
What is their current education situation?
Does the current education setting provide the staffing, support and programming needed for the person with profound autism to safely access education and make meaningful progress?
Do you feel the person with profound autism is safe at school?
What safety concerns have occurred or are you worried could occur at school?
Has the person with profound autism been sent home early, asked to stay home, placed on a shortened day, denied transportation or informally excluded?
Has your family homeschooled, withdrawn from public school, used private school, used clinic-based services, relied on Medicaid/private insurance services because special education services weren't appropriately provided?
What is the most important thing you want HHS, Congress, the IACC or other federal leaders to understand about special education for students with profound autism?
In what state or U.S. territory do you live? (Required.)
Current Progress,
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