The Autism Society, the nation’s leading advocacy organization for individuals with autism and their families, affirms that the role of family is unique and often central in the support and care provided across the lifespan for people with autism. Family members play key roles in identifying and securing opportunities to participate in meaningful ways within their community throughout the lifespan. The Autism Society believes that as our country continues to depend on the active engagement of family caregivers for the support of individuals with autism, it is essential to meet the needs of those caregivers by creating a comprehensive family support program. Because many family caregivers do not receive training and other assistance to provide or care for their loved ones, they may have difficulty locating and coordinating services for their family member across their lifetime.
The Autism Society supports a flexible, comprehensive, and coordinated family caregiving support framework:
• “Family” should be defined broadly, to include parents, siblings, grandparents, extended families and children who have disabilities. The term should include all family members, guardians/caregivers, individuals with disabilities, friends, neighbors, community entities, professionals, and providers as part of a broad support network.
• Families need a place to call, someone to talk with, help problem-solve, and provide short-term assistance during crises.
• Families should have opportunities to access services and supports such as respite, crisis prevention and intervention, systems navigation, home modifications, and health/wellness management, starting early and continuing throughout the lifespan.
• Services should be geared toward a lifelong continuum of care and include future planning before parents/caregivers are no longer able to care for others.
• The support network must build on families’ strengths and be sensitive to culture, religion, and socio-economic factors.
Adopted by the Autism Society Board of Directors, 7/12/2017