Asperger’s debate continues over diagnostic and definitional issues [1-3]

Asperger’s Syndrome is a neurological disorder on the autism spectrum that has only been recognized in the USA since 1994. It has many features of classical autism, but lacks the intellectual learning disabilities. Individuals with this syndrome have difficulty with social aspects of intelligence, such as understanding what those around them think and feel. As a result, they often behave inappropriately in social situations or act in ways that appear unkind or callous. Many Asperger’s individuals have difficulty planning and coping with change despite average or even exceptional intelligence in academic or intellectual areas. This can manifest as a notable lack of “common sense.” Most importantly, this disability has profound effects on the family members and others in close contact with the Asperger’s person. It is the spouses, parents, siblings, and children, of those with Asperger’s Syndrome that experience the emotional pain, especially when the correct diagnosis has been delayed until relatively late in adulthood. Family members need validation and support. Feelings of rejection and loneliness play a major role in the lives of the family members of individuals with Asperger’s Syndrome. Their feelings are not validated, acknowledged, or recognized by the person with this disability.

A chronic illness in a family is extremely stressful. First, there is emotional stress for family members because the sick person is suffering. Although the sick person’s discomfort may seem paramount, family members may also experience considerable anxiety, fear and even guilt when one of their members is ill. Second, family members are stressed by the time and resources demanded by the sick person’s therapeutic regime. An illness can be expensive, and chronic illness may entail years of costly medical treatment before the patient is cured. Finally, there is the stress that results for family members who have to re-arrange their way of life to accommodate the sick person. Extended medical treatment may mean that some family member has to arrange treatment and provide transport to doctors’ offices, clinics or special therapy centers. Furthermore, if the illness involves a physical disability, the family home may have to be rearranged to accommodate it.

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Increased attention in media and research has contributed to a broader understanding of High Functioning Autism (HFA) and Asperger Syndrome (AS). Although much attention is given to autism spectrum disorders as a whole, it is important to understand characteristics of those individuals functioning at the more cognitively able end of the spectrum. While debate continues over diagnostic and definitional issues 1-3 the distinctive needs of individuals falling in Level 1 “requiring support” within the Diagnostic Statistical Manual-V 4, as most individuals previously diagnosed with HFA/ AS would, is of continued importance. This is especially critical as unique patterns of behavior related to social competency, co-morbid disorders, and other long-term outcomes specific to HFA/AS may have distinct impacts on families and the educational experience.

The majorities of autism studies focuses on the mother-child relationship and excludes any analysis of the father and siblings, or assess the siblings but not the father, or include either the mother or the father from each family but not both. The contributions of the father in a family with a child with autism are important but are difficult to assess. Mothers have useful insights about the effects on the other family members, but each member of the family has a different point of view that the mother may not completely understand. Clinicians and other mental health providers who work with families of a child with autism will benefit from exploration of the father’s contributions to the family system. In addition, the effect a child with autism has on the father when compared to the effect on the mother may provide psychologists with some insight into the family structure.  This research compares the contribution from both parents in the areas of family functioning (cohesion and adaptability) and coping strategies.

The purpose of this paper is to explore the impact of children with HFA/AS on their families, from both concurrent and future perspectives. In so doing, several considerations have been posed. One is that child characteristics may have differential impact on families, particularly the co-morbidity of mental health disorders.