In a study of families who had a son with autism under the age of 6 years referred to the TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) program, Bristol and colleagues (1988) found that, while fathers assumed some role in children’s care, mothers carried a much greater burden. This difference was not due solely to employment outside of the home. Bristol et al. (1988) reported that mothers who worked in jobs outside of the home still had greater child care burdens than their employed husbands. These authors also found that expressive support from one’s partner was an important predictor of the quality of parenting in the home.

The time spent working with a child with autism is sometimes stressful and demanding, but it also has the potential to reduce family distress and enhance the quality of life for the entire family including the child with autism (Gallagher, 1991). Techniques such as individualized problem solving, in-home observations and training, and didactic sessions have been employed with families. Mothers who learned skills based on the TEACCH model of education for their child showed a decrease in depressive symptoms over time in comparison with a group of mothers not given this training (Bristol et al., 1993). Koegel et al. (1996) reported that teaching parents how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the parents in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a child with autism can have a measurable positive impact on family stress. As a child’s behavior improves and his or her skills become more adaptive, families have a wider range of leisure options and more time for one another (Koegel et al., 1984). To realize these gains, parents must continue to learn specialized skills enabling them to meet their child’s needs.

Professionals serving children with autism and their families in the United States must also be sensitive to the cultural context of service delivery (see e.g., Harris, 1996; Heller et al., 1994). That cultural sensitivity means providing services in a language in which parents are fluent (e.g., Preito-Bayard and Baker, 1986; Shapiro and Simonsen, 1994; Smith and Ryan, 1987). It also means understanding that a child’s autism means different things in different cultures. For example, for some ethnic, racial, or socioeconomic groups, having a child with a disability may carry implications of shame about one’s failure as a parent and blame for parents and the extended family (e.g., Hanson et al., 1990). Some cultures may encourage an expectation of a magical cure for a developmental disorder (Stahl, 1991). If teachers and other professionals fail to understand what a child’s autism means to a family, it will be difficult to establish the kind of collaborative relationship between school and home that is so essential to the education of young children with autism. While existing research

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement