Long Island Behavior Analysis Conference

Helping Parents and Family Members Cope with ASDs Stress, Support, and Coping in Families of Children with Autism

When a child is diagnosed with an Autism Spectrum Disorder, there are effects on each family member. The challenges are significant, and families cope very differently with the challenges. While many families report experiencing significant stress, many also report being strengthened by the experience. Understanding the unique stressors associated with having a child with autism is important to serving the needs of these families effectively. In addition, identifying variables associated with successful coping is crucial to maximizing the adaptation of families.

The nature of autism itself presents serious coping challenges. It is well-known that it is more difficult to cope with stressors that are long-term, intense, and ambiguous. Clearly, the chronicity and intensity of autism are significant. Furthermore, the variability in symptoms and course create a highly ambiguous situation, especially in the toddler and preschool years. Additionally, it is harder to manage in circumstances that are significantly different from the experiences of those you know. The stressors and worries of parents with children with autism are quite discrepant from those that their friends and family members experience, and that can create a feeling of isolation.

Specific Effects

The effects on the family of having a child with autism can be wide-ranging. Mothers report the greatest levels of distress (e.g., Bristol, 1984). In particular, they experience more sadness, depression, and worry about the future compared to fathers, and they seem acutely aware of the extent to which their family’s experiences are discrepant from the experiences of other families they know (e.g., Marsh, 1993). This can lead to feelings of isolation (e.g., Seligman & Darling, 1997). The pain experienced by fathers is not as well-studied as that of mothers. However, while it may not be as clearly communicated as that of mothers, it is also significant. It often centers on worries about the future and about the child’s acceptance in the community (Moes, Koegel, Schreibman, & Loos, 1992; Rodrique, Morgan, & Geffken, 1992). The impact on marriages is variable, with some families reporting tremendous strain and some reporting strengthening.

Social Support

It is interesting to speculate about what variables might protect families from the negative effects of stress. Social support seems to be crucial. In particular, the extent to which people perceive social support as available seems to be critically important (e.g., Weiss, 2002; Wolf, Noh, Fisman, & Speechly, 1989). In other words, people who feel that they have individuals in their lives that they can speak to about their feelings and experiences cope much better than those who do not report the availability of such support. This makes sense, in that the absence of such support when needed would increase isolation and feelings of aloneness. Another form of social support that has been identified as important includes formal support services such as parent training and respite services. Such support services help individuals to develop instrumental coping strategies by imparting specific skills (e.g., parent training) or by alleviating the daily burdens of the situation (e.g., respite). It has also been shown to be helpful to know others in a similar situation (e.g., Farran & Sparling, 1988; Honig & Winger, 1997). This reduces isolation and provides a unique form of support from others that are facing similar issues on a daily basis. Individual CharacteristicsThat Facilitate Coping

In addition to such instrumental coping strategies, people are helped in adapting to stress by palliative coping strategies, or strategies that provide comfort, control, or meaning. It may be that certain individual characteristics insulate people from the negative effects of stress by providing and fostering such comfort and meaning. Having a strong belief in one’s own ability to control events is linked to better coping, as it reduces feelings of helplessness and leads to effective problem-solving. Holding philosophically comforting life views is also associated with positive adaptation. For example, many families develop broad perspectives on the positive benefits of the experience and ascribe important meaning to the experience on an individual or familial level. Furthermore, having a high level of involvement in helping one’s own child and/or other individuals with autism seems to help families adapt. Families who involve themselves deeply in their own child’s program join as full members of the educational team, and can steer the course of their child’s treatment, ensuring that important goals are addressed. Families who involve themselves in broader involvement in the autism community can feel a sense of purpose in advancing the cause of meeting the needs of all people and families affected by autism. Finally, having an optimistic attitude toward life’s challenges may help protect individuals from succumbing to the negative effects of stress (e.g., Albanese, San Miguel, & Koegel, 1996; Gill & Harris, 1991; Weiss, 2002). Having a child with an ASD is intrinsically stressful. While families must cope with a difficult reality that they may have never considered, they must also find the resources to address the child’s significant needs. Families sense and are told that time is of the essence, and that they must act immediately to obtain effective services once the diagnosis is received. Such services are often hard to find or are simply unavailable, multiplying the stress. We have heard from parents that finding professionals and appropriate school programs leads to reduction in stress. For many families, securing treatment after challenging and frustrating experiences is associated with a great feeling of relief.

As we mentioned above, the nature of the stressor is a chronic, long-term circumstance – more of a marathon than a sprint. Therefore, parents need to conserve some energy for the long haul. Finally, as also noted above, the ambiguity is high, because of the diversity within the diagnosis. Outcomes include having lifelong dependence on others and becoming indistinguishable from peers, and everything in-between these two possibilities. In the toddler and preschool years, in particular, it is often not possible for clinicians to predict a particular child’s path. Tolerating this level of ambiguity is a serious challenge for most parents, and can delay the process of acceptance until the impact of the disability is clear for this particular child. Growing up With Autism:

The Sibling Experience

Effects of autism also extend beyond the parents to the brothers and sisters of the person with autism. Children with autism engage in behaviors that may be upsetting or perplexing to brothers and sisters. Kaminsky and Dewey (2001) found that siblings of children with autism experienced less sibling intimacy, positive social interaction, and nurturance than did siblings of children with Down syndrome or of typically developing children. However, they also described a greater admiration for their brother or sister and fewer feelings of competition.It can be helpful for parents to provide developmentally appropriate information to the siblings about the nature of autism to help reduce fear and misconception and to aid understanding (Glasberg & Harris, 2003; Glasberg, 2000). It can also be helpful to teach siblings how to engage their brother or sister in simple toy play (e.g., Celiberti & Harris, 1993). This can reduce the disappointment siblings feel if they are unsuccessful in getting their sibling to attend to them or engage with them.

Older adolescents and adults sometimes report that their experiences as a sibling of a child with autism taught them a patience and tolerance they might not otherwise have learned. Martins (2007) also reported that siblings of children with autism are drawn to the helping professions and often report a sense of mission about helping others on a large scale. As parents age, typically developing siblings may have to increase their involvement with their sibling with autism and may have to cope with the death of their parents without the kind of sibling support they might wish was possible.

Summary

Families may be helped by participation in support groups, by meeting and networking with other families of children with autism, by becoming involved in advocacy efforts, and by contributing to causes and programs that improve the lives of people with autism. Coping may also be enhanced by finding activities that bring them joy and by developing good stress reduction skills. Siblings may be helped by being provided with accurate information, by teaching them skills to interact effectively with their brother or sister with autism, and by knowing other children in a similar circumstance. There can be plenty of joy in a family that includes a child with autism, and many families report that such joy outweighs the challenges. A family that copes effectively may feel closer to one another because they have worked together to manage difficult circumstances. And families that cope well may experience the special pride and pleasure that come from meeting life’s challenges with determination, grace, and optimism.

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