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Educating Children with Autism (2001)
Board on Behavioral, Cognitive, and Sensory Sciences (BBCSS)
Board on Children, Youth and Families (BOCYF)

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. "3 Family Roles." Educating Children with Autism. Washington, DC: The National Academies Press, 2001.

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Educating Children with Autism

structive atmosphere and being supportive of the professionals who work with one’s child. Public school systems and advocacy groups can offer training in advocacy skills, including conflict resolution, to parents and school staff to ensure both groups are well informed and to ease tensions that may arise in their interactions.

Although the role of parent as advocate is compatible with current legislation and consistent with many people’s views of the roles of parents, there are no high quality studies examining either the most effective ways to train parents to be advocates on behalf of their children with autism or how effective parents are in this role. Such research might be useful in determining how best to prepare parents for advocacy and when additional support from others may be most useful in the advocacy process.

SUPPORT FOR FAMILIES

In addition to research specifically on the support needs of families of children with autism, there is a valuable tradition of research in the early intervention literature that explores the needs of families who have children with a range of developmental and physical disorders. Both of these bodies of research have the potential to make important contributions to serving and empowering children with autism and their families (Dunst, 1999; Seligman and Darling, 1997), including parents, siblings, and members of their extended families.

The perception of the meaning of having a child with autism and of family support can have an impact on how well parents cope. For example, Bristol (1987) found that mothers who feel they are to blame for their child’s disability, or who experience the child’s needs as a catastrophe for the family, tend to make less effective adaptations than those who hold a less critical view. Fong (1991) demonstrated that negative expectations can color one’s perception of relatively neutral events concerning the performance of a child with autism. In a study of mothers of children with autism whose husbands assumed a share of child care, Milgram and Atzil (1988) reported enhanced life satisfaction from that sharing of responsibilities. Similarly, perceived social support and psychological hardiness both tended to buffer mothers of children with autism from the effects of stress (Gill and Harris, 1991).

Family needs change over time (Bristol and Schopler, 1983; DeMyer and Goldberg, 1983). For example, parents of young children typically are focused on understanding their child’s diagnosis, dealing with the emotions that are stirred by encountering a serious problem in their child’s development, finding services, and working intensively on behalf of their child. For parents of an older child, there is the growing realization that their child’s needs will continue over a lifetime—that they must consider

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