The families of youth and adults on the autism spectrum provide vital supports across the lifespan. This report explores what family members report about autistic adults: the settings they live in, their access to services, opportunities to participate in their communities, and the choices they have about their services and supports. We also look at the characteristics of family members themselves, how they participate in decision-making and choices about services and providers, and the types of supports they may need themselves to identify and coordinate quality care and to best meet the needs of the autistic adult.

Health and health care are critical issues for many children and adults on the autism spectrum. They may experience more frequent use of services and medications. They may need more types of routine and specialty healthcare. And their overall health and mental health care tends to be more complex than people with other types of disabilities and special health care needs. This report provides indicators of health and health care for autistic persons across the lifespan. Topics covered include overall health, health services, medication, insurance, and accessing services. We need to understand health and healthcare needs across the life course to support recommendations on how to improve health and health care at critical points across a person’s life. The purpose of this report is to catalogue indicators to aid in decision making to this end.

Families of children with ASD face significant financial challenges due to their child’s complex service needs and frequent out-of-pocket expenditures for community services and health care. This report describes financial hardship among families of children with ASD (ages 3-17 years) and their participation in safety net programs.