Grandparents raising grandchildren with developmental disabilities

Grandparents raising grandchildren with developmental disabilities (2002). Heller, T., & Ganguly, R.

This paper examines the demographics of grandparent caregivers of children and adults with developmental disabilities, their reasons for assuming this role, their needs, concerns and challenges. Additionally it reviews supportive interventions for this population and implications for the aging network in designing and coordinating services as part of the National Family Caregiver Support Program. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.

Adolescents and Adults With Autism, Report #1: A Book of Quotes: Shared Experiences of Families of Adolescents and Adults with Autism

Adolescents and Adults With Autism, Report #1: A Book of Quotes: Shared Experiences of Families of Adolescents and Adults with Autism (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.

This report is based on interviews with more than 400 parents caring for a son or daughter with autism. This is the largest federally funded study of these families conducted to date. The thoughts and feelings these parents share express the extraordinary wisdom, energy, struggle, and triumphs associated with this caregiving experience.

Adolescents and Adults with Autism, Report #2: A Profile of Adolescents and Adults With Autism Spectrum Disorders

Adolescents and Adults with Autism, Report #2: A Profile of Adolescents and Adults With Autism Spectrum Disorders (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.

This report presents the objectives, methodology, and initial findings of the first large-scale research study of 405 adolescents and adults with autism and spectrum disorders (ASD) and their families. It contains data on diagnosis, symptoms and behaviors, services and treatments, and participation in social and recreation activities. The authors compare these data to the research findings to date.

Adolescents and Adults with Autism: Reflections From Adult Siblings Who Have a Brother or Sister With Autism Spectrum Disorder, Report #3

Adolescents and Adults with Autism: Reflections From Adult Siblings Who Have a Brother or Sister With Autism Spectrum Disorder, Report #3 (2002). Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.

This report presents siblings’ perspectives on having a brother or sister with autism. It is based on a study of caregiving that included more than 400 families. Quotes from more than 200 adult siblings provide insight into their experiences over the life course. Topics include sibling relationships, community acceptance, positive and negative experiences of having a sibling with a disability, future expectations, and advice to parents and to teenage siblings.

Adolescents and Adults With Autism: Recommended Resources From Families, Report #4

Adolescents and Adults With Autism: Recommended Resources From Families, Report #4 (2002), Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.

This report contains the books, videos, and internet web sites that helped families learn more about their son or daughter’s autism spectrum disorder. Families recommended these resources in a study of more than 400 parents caring for a child with autism spectrum disorder.