Developmental Disabilities

Historically, there have been a number of myths and stereotypes about the impact of a child with a developmental disability upon the marital relationship and the family. Many factors may mediate the impact upon individuals, the marriage, and the family. A major factor can be the underlying etiology of the developmental disability and whether there was anything done or not done—such as maternal consumption of alcohol—that resulted in the disability. If the course of the developmental disability is known and related to known factors in either parents' genetic inheritance or related to action taken (or not taken) by either parent, the diagnosis of a developmental disability presents a situation where the marital relationship may be threatened by both blame and guilt. How and whether the relationship survives such a threat may be influenced by a number of factors, including the parents' individual beliefs, the beliefs and roles played by extended family members, cultural beliefs, extended family, the community and societal supports available to the family, and the family's material well-being.

An individual parent's reaction to a diagnosis is going to have cognitive, emotional, and— possibly—spiritual components, and these components may not be consistent with each other or over time. When discussion of parents' reaction to a diagnosis of mental retardation first began to be reported, it was characterized as grief and chronic sorrow (Solnit and Stark 1961; Olshansky 1962). These characterizations persisted despite cautions that they were obtained from nonrepresentative populations and were viewed through a perspective that saw such disabilities as the most devastating of circumstances for a family (Wolfensberger 1967). Terms such as denial, chronic sorrow, and overprotection, used descriptively, became explanations for parental behavior that was invariably viewed in a negative light (Hartley and Robinson 1987). Ray Barsch characterized this no-win situation:

If the parent is militantly aggressive in seeking to obtain therapeutic services for his child, he may be accused of not realistically accepting his child's limitations. If he does not concern himself with efforts to improve or obtain services, he may be accused of apathetic rejection of his child. If he questions too much, he has a "reaction formation" and may be over-solicitous. If At the Kennedy-Kriger Institute for Handicapped Children in Baltimore, Maryland, an instructor educates disabled students. The legislative right to education and other services for people with developmental disabilities is unique to the United States. RICHARD T. NOWITZ/CORBIS he questions too little, he is branded as disinterested and insensitive. (1968, p. 8)

Although the emphasis on family-centered care includes an acceptance of the variety of parental and family reactions to a diagnosis as legitimate, families still report feeling that they are being judged in their reactions to and methods of coping with a diagnosis of developmental disability or mental retardation.

One of the factors that may mediate a family's reaction to a child with a disability is society's acceptance of disability. Part of the community that historically has not been accepting of developmental disabilities is the medical community. The standard advice given to families when a child's disability was identified at birth or in the first several months of life was that the child should be "institutionalized" and that the family should "get on with their lives." Whether or not the family followed this advice, a critical issue in adjustment was whether there was agreement between the parents—and in many cases support of the decision on the part of the grandparents—regarding whatever decision was made. With the passage of the Developmental Disabilities Act in 1970, the development of increased community supports, and decisions to close institutions, the frequency of institutional placements of young children with developmental disabilities decreased dramatically.