Collaboration with Families
As early intervention clinicians strive to provide functional assessments and effective interventions for toddlers with ASD in natural environments, collaboration with the families of such children becomes imperative. As stated previously in this article, the voices of the family members of a child with ASD need to be heard throughout the assessment process in terms of creating both short- and long-term goals for the child. The most effective intervention and program decisions will be those that include the needs and priorities of the family members, as all members of the family will be participating in some way in the development and education of their child with ASD. For many families of children with ASD, family life revolves around autism. Yet in terms of documentation revealing the impact of ASD on families, few empirical research studies have been conducted.
A search of the research literature examining the impact of disabilities on families in general revealed that such publications are limited; even less research has been done specifically on the impact of autism spectrum disorders on families (Norton & Drew, 1994; Schall, 2000). In seminal work, Schopler and Mesibov (1984) edited one of the first exhaustive texts specific to the effects of autism on the family documenting the research literature to date. This text continues to provide professionals who work with children and families impacted by ASD with a foundation of the advocacy and support systems that are required to provide early intervention services. More recently, publications specific to the needs of families and the effects of autism on parents have begun to emerge (Gray, 1998; Randall & Parker, 1999). As professionals continue to include the needs and priorities of the family in assessment and intervention, a deeper understanding of the multidimensional impact of ASD on the family unit is required.
Potential stressors specific to families of children with autism may include: increased number of professional contacts prior to diagnosis, extended length of time before receiving a diagnosis, and later, implementation of intervention services. Other possible areas of familial stress related to ASD include factors related to respite care (Cohen, 1998), depression and/or anxiety about the child’s future, financial constraints and planning, locating needed resources and social support networks (Hecimovic, Powell, & Christensen, 1999), and behavior challenges in public (Marcus, Kunce & Schopler, 1997). Also, while families of typically developing children often have difficult decisions to make regarding childcare, such decisions can be even more challenging for parents of children with ASD. Clinicians working with children and families impacted by ASD must have an awareness of these potential stressors as well as any other needs and concerns of the family unit. Clinicians should be able to assist families in locating support services to more adequately address the varying needs of families in regards to financial assistance, parent education, respite care, and support networks (Hecimovic et al. 1999).
A search on the most recent literature indicates that mothers of children with ASD are most often the primary caregiver for their children with special needs. Therefore, these mothers may be at greater risk for psychological and psychosocial difficulties that can arise from feelings of stress, isolation, and scarcity of resources and supports. In a study by Rodrigue, Morgan and Geffken (1990) mothers of children with ASD were compared to mothers of children with Down Syndrome and mothers of typically developing children. The mothers of the children with ASD reported feeling less parental competence, less marital satisfaction, and less family adaptability than mothers in the comparison groups. Also, higher levels of disrupted planning, caretaker burden, and family burden were documented from the mothers of both the children with ASD and the children with Down syndrome in comparison to the mothers of typically developing children. The mothers of children with ASD reported using coping strategies such as information seeking and self-blame more often than mothers of typically developing children. These mothers also reported a fewer number of people in their social support system, with those individuals who did provide support to the mothers typically providing multiple types of assistance, such as helping with child care and financial hardships, and providing emotional supports.
Mothers and fathers also report differential levels of stress regarding the impact of ASD on the family. Gray (2003) published an article examining gender differences in coping strategies of parents of children with high functioning autism. Mothers in this study reported that they relied heavily on support from other people, including both family members and friends, and that they found this support to be essential. Gray postulated that a diagnosis of ASD may have very different meanings for mothers and fathers. He went on to propose that coping strategies may be determined by each individual’s role in the larger family unit with levels of stress being influenced by the family member’s occupation and specific interactions with the child. The mothers in this study were most likely to be the primary caregivers and therefore experience the brunt of stressors in managing the child’s needs, behaviors, and appointments; fathers, however, reported much less contact and direct stress impact of autism as it related to work and family life. While mothers were more likely to report that their child’s autism had severely affected their emotional health, fathers perceived a greater family impact but a lesser personal impact of their child’s autism.
Gray (2002) published a longitudinal study that documented the social experiences and adaptive strategies of both mothers and fathers of children with ASD. He documented how these parents coped in daily life over a ten-year period. Through years of ethnographic interviews with 35 parents Gray noted parental concerns such as: parent emotional distress and depression, coping with behavior problems in social situations, feelings of isolation, and career problems. Specifically, mothers of children with autism reported that their children’s diagnosis prevented them from returning to work at all or restricted the hours and/or type of employment they were able to maintain. While slightly more than half of the families reported that their situation at the end of the study period was better than it had been a decade before, future planning for their children remained a significant stressor throughout the years of the study.
As the young child with ASD grows and matures, and his or her family’s needs and priorities change, so too will there be changes in the roles of professionals who support the family (Gabriels & Hill, 2002). Therefore, collaboration practices between family members and clinicians that facilitate respect and recognition of the unique child and family circumstances will serve all of those involved in early supports and services for toddlers with ASD. Research examining the coping strategies of families of children with ASD as well as the potential impact of raising a child with this type of disorder on the family unit is critical. Additionally, the need for collaboration skills between families and professionals as well as strategies for ameliorating the devastating effects of autism continues to be an imperative goal of future research.