The Rest of the Family

When a child is diagnosed with an autism spectrum disorder, the entire family makes many accommodations to allow the child to participate as fully as possible in family, school, and community activities. These accommodations can take a toll on all members of the family, sometimes leading them down paths they never expected to travel. Although the needs of the child with an ASD initially may seem paramount to parents, exclusive focus on a single family member creates difficulties across the rest of the family system. Therefore, for the well-being of every family member, it is crucial that parents consider their own needs, the needs of their other children, and the needs of extended family members to be as important as those of the child with an ASD. In this chapter, we examine family issues that often arise when a child has an ASD. We first look at the marital relationship and how it can be placed at risk. Next, we describe the experiences of children who have a sibling with autism. We then consider the feelings of grandparents and other extended family members who are often somewhat removed from the daily life of the family but who may have extensive influence on family adjustment. We also touch on friendships and their importance to parents. Finally, we suggest approaches to dealing with the sometimes intrusive reactions of strangers and acquaintances.

MARITAL RELATIONSHIP

In many families, the roles of mother and father tend to eclipse the roles of wife and husband, at least during the period of time when children are young and need a lot of care. This is even more true in families of children with ASDs, who demand constant attention and assistance. Yet, our experience in talking with families, as well as research into the functioning of families who have children with disabilities, strongly indicates that the kind of intimate support that spouses receive from each other is extremely important to everyone in the family (Kaminsky & Dewey, 2001; Rivers & Stoneman, 2003). Most professionals who work with children with ASDs have not been trained to provide marital counseling and need to recognize their limitations in discussing family relationships with parents. If parents suggest that their family is experiencing a great deal of stress, it can be helpful to offer a referral to a family counselor. In all situations, professionals who are knowledgeable about the issues couples face when raising a child with an ASD can support parents in their relationship with each other and with their child.

Family Roles

When a child has a disability, it is common for mothers to assume a large portion of the child’s care. Frequently, mothers in this situation choose not to be employed outside the home or limit their hours of employment (Booth & Kelly, 1999; Gray, 2002). As a result, fathers assume a greater responsibility for the financial well-being of the family. These decisions about how to divide the family workload are often made on practical grounds, in response to immediate demands, and without a lot of thought about their long-term ramifications. Many couples find themselves in a traditional family pattern (husband employed and wife at home), however, that they had not anticipated and that does not fit their image of their relationship with each other. Furthermore, as the two partners’ roles become more separate, each may come to feel unsupported by the other. Mothers who are responsible for the majority of the care and intervention for a child with an ASD can become exhausted with the never-ending demands and be dissatisfied when their husband is not available to provide respite.

Disagreements Over Services

There are many sources of potential conflict between spouses when a child has an ASD. Conflicting information about types of educational and intervention services and especially alternative treatments may be interpreted differently by mothers and fathers. Often, mothers are the family members who participate most actively in parent support groups and, therefore, hear the stories about validated interventions and "miraculous cures." In some families, fathers may be skeptical about the value of certain intervention approaches. In others, fathers may find it reduces family conflict if they simply withdraw and let their wife be in charge of their child’s intervention. Either situation presents many opportunities for miscommunication and a lack of connection between parents. Professionals can promote open consideration of all intervention options by providing families with reliable written information about available services and alternative approaches, as well as by making active efforts to discuss the child’s intervention program with both parents.

Ways of Coping

Raising a child with an ASD is difficult and requires many adjustments and personal sacrifices on the part of all family members. Often, there are crisis periods that must be weathered, and every parent feels overwhelmed at times. Each family member has his or her own way of coping with stress and challenges. Some people are problem focused in their approach to difficulty, using problems as motivators for action. Others are emotion focused, with a need to express their feelings openly and to be heard. Some people believe their family problems, including those surrounding the care of a child with an ASD, are private and should be kept that way, whereas others are quick to seek support from family, friends, neighbors, their faith community, and professionals.

When Parents Separate

In some families, the stress of raising a child with an ASD combines with other factors to lead to separation or divorce. There has been little study of single-parent families of children with ASDs, but it is reasonable to assume that the difficulties only multiply. In divorced families, it is more common for mothers to have custody of and responsibility for children (Clarke, 1995); it is also more common for single mothers to have fewer financial and social resources than their former husbands. Mothers who are raising children with ASDs on their own especially need support from extended family, friends, community members, and professionals.

SIBLING RELATIONSHIPS

Sibling relationships are the longest-lasting family bonds many individuals will have in their lives. Yet, it is also true that there is great variability in how brothers and sisters get along with each other, both during childhood and as adults. Many factors contribute to the nature of sibling relationships, and an ASD is only one of those factors. Thus, parents who have a child with an ASD cannot assume that any pattern of sibling relationships is standard.

Helping Siblings Understand Autism Spectrum Disorders

Autism spectrum disorders are difficult to understand. Many parents have problems grasping the disorder’s complex nature, and most people who have not had direct experience with ASDs have inaccurate views of their symptoms and outcome. It is therefore important that parents do their best to help children understand how an ASD is expressed in their sibling’s behavior.

Respecting the Individuality of Each Child

When a family includes a child with an ASD, siblings who are typically developing may believe that their needs are not as important or urgent as those of their siblings with ASDs. Furthermore, siblings of children with ASDs sometimes do not view themselves as having an identity outside of their sibling role. Instead, it is crucial for parents to ensure that all of their children’s psychological needs are met.

Promoting Positive Relationships

Most parents hope their children will get along and develop strong relationships with one another. Parents of children with ASDs have the same hopes. The research literature on siblings of children with disabilities, and with ASDs in particular, tends to portray these siblings as having adjustment difficulties and psychological problems (Hastings, 2003).

Determining Sibling Responsibilities

Although siblings of children with ASDs can participate actively in the life of their brother or sister, they should not be expected to take on major responsibilities for physical care or intervention. This can disrupt the natural balance of sibling relationships, leading to resentment and adjustment problems.

Offering Support for Siblings

In many U.S. communities, organizations supporting individuals with disabilities organize Sibshops, which provide excellent supports for siblings of children with special needs. Sibshops are based on the idea that brothers and sisters of children with disabilities benefit from knowing other children in the same situation.

RELATIONSHIPS WITH GRANDPARENTS AND OTHER EXTENDED FAMILY MEMBERS

A diagnosis of an ASD can change the family dynamic and even lead to intergenerational conflict. ASD is a relatively new term for a set of disorders that has always been evident but has not been widely recognized. Thus, it may be completely unfamiliar and very confusing to grandparents. If a child is generally functioning well or has relatively mild symptoms, grandparents and other family members may be critical of the family’s decision to seek a diagnosis.

FRIENDSHIPS

For most people, close friends are key contributors to self-esteem and safe outlets for expressions of negative feelings, such as fear and depression. True friends can be trusted not to share confidences with spouses, co-workers, or professionals working with a child.

STRANGERS AND ACQUAINTANCES

Parents of children with ASDs often find themselves in situations where they feel called upon to defend their child and their parenting in public. It is of course helpful for parents who have a child with an ASD to rehearse with the child what will happen during outings in public.

SUMMARY

Professionals who work with children with ASDs tend to see the family through a narrow lens that is focused on that child and his or her challenges. Given how much is known about the importance of the entire family system—marriage, siblings, extended family—to everyone’s well-being, it is time for professionals to expand their view to include all the relationships that affect the child.