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3 Family Roles Parents of young children with autism play multiple roles in their childrenâs life. Often they are the first people to recognize a developmen- tal problem, and they must pursue their concern until they receive a satisfactory diagnosis and find or develop appropriate services for their child. Once they find a suitable treatment program, parents typically are active partners in their childâs education to ensure that skills learned in the educational program transfer to the home setting and to teach their child the many behaviors that are best mastered in the home and commu- nity. As members of the individualized education plan (IEP) team, par- ents may also be active advocates for the child, ensuring that the educa- tional process goes forward appropriately. These many demands on parents occur in the context of family life, including the needs of other children, the parents as individuals and as a couple, and family needs as a whole. In addition, the parents of young children may confront sadness, anger, disappointment, or other complex emotions that can accompany the initial discovery that oneâs child has a significant developmental problem and the ongoing need to make sacri- fices to serve the needs of their child. Most families cope effectively with these demands, but some may encounter very substantial stress as they raise their child with autism. In the 1950s and 1960s the psychodynamic explanation of autism held sway in the United States (Bettelheim, 1974). That perspective, now clearly counter to a large body of research on the biological roots of au- tism, had important implications for treatment. Fortunately, today we 32
FAMILY ROLES 33 hold a far different view of the role of parents in the treatment of autism. We recognize that parents are partners in an educational process that requires close collaboration between home and school (e.g., Lovaas et al., 1973; Schopler and Reichler, 1971). In order to provide an appropriate education for their child, parents of children with autism need specialized knowledge and skills and scien- tifically based information about autism and its treatment. Prime among these are the mastery of specific teaching strategies that enable them to help their child acquire new behaviors and an understanding of the na- ture of autism and how it influences their childâs learning patterns and behavior. Parents also need to be familiar with special education law and regulations, needed and available services, and how to negotiate on be- half of their child. In addition, some parents need help coping with the emotional stress that can follow from having a child with a significant developmental disorder. SPECIAL DEMANDS ON PARENTS The identification of parents as serving a key role in effective treat- ment of their child has great benefit for the child. However, it is a role that is not without costs, and the implications for family life are consider- able. Many parents of children with autism face multiple, demanding roles. These include serving as teacher and advocate as well as loving parent and family member. Gallagher (1992) points out the complex demands this places on parents and the need to support family decision- making and control, while providing sufficient professional expertise to enable their choices. Research suggests that while many families cope well with these de- mands, the education of a child with autism can be a source of consider- able stress for some families (see, e.g. Bristol et al., 1988; Harris, 1994). In general, mothers report more stress than do fathers, often describing is- sues related to time demands and personal sacrifice (e.g., Konstantareas et al., 1992). Among specific concerns expressed by mothers are worry about their childâs welfare in the years ahead, the childâs ability to func- tion independently, and the communityâs acceptance of their child (Koegel et al., 1992). Mothers of children with autism also report more stress in their lives than do mothers of children with other disabilities (e.g., Rodrigue et al., 1990). Fathers of children with autism or Down syndrome report more dis- ruption of planning family events and a greater demand on family fi- nances than do fathers whose children are developing typically. These three groups of men do not differ, however, on measures of perceived competence as a parent, marital satisfaction, or social support (Rodrigue et al., 1992).
34 EDUCATING CHILDREN WITH AUTISM 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 childrenâs 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 oneâs partner was an important predictor of the quality of parenting in the home. The time spent working with a child with autism is sometimes stress- ful 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 prob- lem 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 childâs 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 childâs 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 sensitiv- ity 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 childâs autism means different things in different cultures. For example, for some ethnic, racial, or socioeconomic groups, having a child with a disability may carry im- plications of shame about oneâs 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 childâs 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
FAMILY ROLES 35 suggests that it is important to be sensitive to the familyâs cultural context to provide effective services, there is a need for more research to under- stand how socioeconomic status, race, and ethnicity impact services. TEACHING PARENTS NEEDED SKILLS Because of the nature of autism, young children with this disorder need a consistent and supportive environment to make optimal educa- tional progress. For example, children with autistic spectrum disorders often have problems transferring a skill learned in one setting to another place or time. This process of generalization of learning needs to be anticipated and supported, and so parents of children with autism need to be more closely involved in the educational process than do parents of children with many other childhood disorders. For example, early re- search on the benefits of applied behavior analysis by Lovaas and his colleagues (1973) showed that children with autism who returned to a home prepared to support their learning maintained their treatment gains better than children who went to institutional settings that failed to carry over the treatment methods. Parents can learn techniques for teaching adaptive skills and manag- ing the behavior of their child with autism. Such intervention maximizes the childâs learning, improves the quality of family life, and may enable parents to sustain their efforts with their child over time. Based on that early observation of the importance of the home environment (Lovaas et al., 1973), several behavior analysts developed techniques for teaching parents the fundamentals of applied behavior analysis and making them integral members of the educational team. That research documented that parents could master the basics of applied behavior analysis, and many became highly skilled teachers (e.g., Baker, 1989; Harris, 1983; Koegel et al., 1984) who expressed satisfaction with the benefits of train- ing (e.g., Harris, 1983; Kolko, 1984). The proponents of applied behavior analysis have carried the role of parental involvement farther than other approaches, and in some cases it is parents who provide much of the oversight and management of home-based applied behavioral analysis programs, with an outside consultant offering periodic input (e.g., Lovaas, 1987). Although the bulk of the research on teaching parents to work with their child in the home has been done using applied behavior analysis, Ozonoff and Cathcart (1998) reported a study in which parents of young children with autism were taught to use TEACCH instructional methods in the home. In contrast with a no-treatment control group, the children whose parents used TEACCH methods in the home showed greater im- provement in a variety of skills over a 4-month interval. The children in
36 EDUCATING CHILDREN WITH AUTISM both groups were simultaneously receiving day treatment from a variety of settings. It is important for schools to recognize that parents need both initial training and on-going support for trouble shooting if they are to sustain their effort at home teaching (Harris, 1986). Simply providing a basic training course in teaching principles is often insufficient to ensure the long-term ability of many parents to solve new problems as they arise. Our review of the practices of the most frequently cited programs serving children with autism indicates that all of them offer training to parents in the teaching methods used in the programs (see Chapters 11 and 12). Their expectations for parental involvement range from the assumption of a major role on a daily basis to a less central but still essential role of ensuring that a child can transfer material from school to the home and community. Most studies of parents as teachers were carried out when parents had an auxiliary role in supporting school based programs. There has been a dearth of studies of the role of parents in intensive home-based programs. Today, though it is not uncommon for parents to have the central function in a home-based program, little is known about the most effective ways to help them master the skills they need for this role or about the stress this role may bring to family life. THE ADVOCACY ROLE In addition to supporting their childâs learning at home and in the community, parents are also cast in the role of advocate for their child with autism. Like parents of children with other disorders, these parents need to serve as effective members of the IEP or Individual Family Service Plan (IFSP) team, helping to ensure that appropriate educational pro- grams are in place for their children (Seligman and Darling, 1997). Being an effective advocate means that parents understand the legal rights of their child according to federal and state law and regulations. For most families the advocacy role focuses mainly on the needs of their own child. There will also be some parents for whom that role may encompass work at the local, state, or national level to advocate on behalf of policies to meet the needs of all children and adults with autism. Although some parents may resort to legal processes to obtain the educational resources needed by their children, for most families the ad- vocacy process is a much less adversarial one. Being a good advocate means being an effective collaborator with the professionals who serve a child. That entails learning the vocabulary of education, understanding the characteristics of autism and how those are related to a childâs educa- tional needs, and appreciating how treatment techniques work. It also means learning how to disagree and resolve differences within a con-
FAMILY ROLES 37 structive atmosphere and being supportive of the professionals who work with oneâs 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 peopleâs views of the roles of par- ents, 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 pro- cess. 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 chil- dren 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 mem- bers 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 ex- ample, Bristol (1987) found that mothers who feel they are to blame for their childâs disability, or who experience the childâs needs as a catastro- phe for the family, tend to make less effective adaptations than those who hold a less critical view. Fong (1991) demonstrated that negative expecta- tions can color oneâs 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 re- sponsibilities. Similarly, perceived social support and psychological har- diness 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 childâs diagnosis, dealing with the emotions that are stirred by encountering a serious problem in their childâs development, finding services, and working intensively on behalf of their child. For parents of an older child, there is the growing realization that their childâs needs will continue over a lifetimeâ that they must consider
38 EDUCATING CHILDREN WITH AUTISM their childâs educational program in relation to a chronic disability and that they will need to continue to cope in the face of unrelenting demands. Family needs also vary according to the severity of the childâs autistic disorder. Younger children and those who are less impaired have a better prognosis than those who are older or have very severe autism. It is useful for school personnel to be sensitive to these different problems and to work closely with parents to provide family support and help them find the resources that fit the developmental needs of the child and the family as whole. Many families benefit from the availability of both formal and infor- mal social support to handle the complex demands in their lives. A family-centered approach emphasizes addressing the needs and desires of individual families, rather than providing predefined services. This philosophy is often practiced in other fields within early childhood spe- cial education and has been applied implicitly to the field of autism. Po- tential sources of support include classroom teachers; IEP team members, including representatives of the local education authority (LEA); pediatri- cians; and other professionals who evaluate and treat children with au- tism. Although the schools can provide a number of formal supports to families of children with autism, there are also other valuable resources for parents to access. These informal supports are found through net- working with other parents, membership in support groups, and from families and neighbors. Bristol (1987) found a positive relationship be- tween adequacy of social support, the use of active coping behaviors, and family adaptation for parents of children enrolled in the TEACCH pro- gram. Lack of financial resources and of access to information can be significant barriers to families seeking needed support. In serving families, it is important not to overlook siblings, whose lives can be disrupted in serious ways, but who also benefit from their brothers or sisters with autism as well (Konidaris, 1997). These children experience more feelings of sadness and worry than do other children, although for the most part these differences do not reflect significant psychopathology (e.g., Rodrigue et al., 1993). Brothers and sisters need support as they come to understand autism and its impact on a sibling who has the disorder, and these needs change over time (Glasberg, 2000). Often siblings will be enrolled at the same school: a sensitive teacher can help a child respond to questions about a siblingâs autism and be alert to the impact on the childâs peer relationships of having a brother or sister who is markedly different from most other children in the school. The LEA can offer sibling support groups to provide factual information, teach play skills, and provide peer group support for brothers or sisters (Celiberti and Harris, 1993; Lobato, 1990; McHale and Harris, 1992). Research on the genetics of autism suggests that siblings are at a greater risk for having autism or a related milder disorder than are other
FAMILY ROLES 39 children (e.g., Bailey et al., 1998; Szatmari et al., 1998). For this reason, discussion of recurrence risks should be part of the overall delivery of services, and it is important that younger siblings of children with an autistic spectrum disorder be followed carefully after birth to determine whether they show any indication of a disorder on the autism spectrum. Careful tracking would enable very early intervention with this group of youngsters. FROM RESEARCH TO PRACTICE In general, the research literature examining methods of training par- ents to be teachers has been of somewhat higher quality and more system- atic than the work looking at the effects of raising a child with autism on the quality of family life. One of the common flaws in a number of studies of family stress has been the failure to include two comparison groups, one of typically developing children of the same developmental level and the other of children with a different disability. Both of these groups are important because raising any child affects parents, and most serious chronic disabilities of childhood are likely to influence the quality of fam- ily life. There is also a striking lack of research examining how socioeco- nomic status, ethnicity, and race influence vulnerability to stress, which forms of support and training that are most helpful when and for whom, and the most effective modalities for service delivery (Wolery and Garfinkle, 2000). Although researchers tend to look where the light is brightest (i.e., the easiest places to find research participants), if we are to fully appreciate the impact of autism on families and become expert at teaching parents how to work with and advocate on behalf of their child, we need to understand different kinds of families. Research has also not paid sufficient attention to interactions between child factorsâsuch as degree of cognitive and language impairment, severity of autistic involve- ment, and specific diagnosis on the spectrum of autismâand family char- acteristics that may influence both the ease with which parents can teach their child and the stress level in the household.