Asperger's Syndrome: Emotional and Social Implications

Family Issues

Lesson Seven: Different Pathways to Diagnosis

There are several different pathways to the diagnosis of Asperger’s Syndrome and these are described in detail in Tony Attwood's book, Asperger's Syndrome: A Guide for Parents and Professionals². Some children receive the diagnosis fairly early in life, while some individuals are not diagnosed until well into adulthood. In some cases, children are inaccurately diagnosed with another disorder, (e.g., a language disorder, depression, schizoid personality), and are only later correctly diagnosed with Asperger’s. Some children are considered autistic early in life, but progress well enough to ultimately be diagnosed with Asperger’s Syndrome.

The impact of the diagnosis of Asperger's Syndrome on a family is no doubt partly related to the manner in which the individual was diagnosed. Families who recognize early on that there is something seriously wrong with their child and are given a diagnosis of autism spectrum disorder (and only later learn their child has Asperger’s) will experience many of the reactions families with autistic children have. These reactions are described below. Many families, whose children progress far enough to no longer warrant an autism diagnosis, experience considerable relief and pride in their and their childrens'accomplishments. At the same time, they still struggle with complex feelings related to their child's Asperger's diagnosis. If the diagnosis is made in a parent or other relative when a child in the family receives the diagnosis, a different constellation of feelings is often set into motion. In these families, the adult must grapple not only with the diagnosis of a disability in the child, but with coming to terms with his own disability as well.

Because many children with Asperger's Syndrome were originally felt to have an autism diagnosis, the following remarks address the social and emotional issues for the families of children diagnosed with any diagnosis along the autism spectrum (ASD). These remarks generally refer to adult family members, primarily parents and sometimes grandparents. For information regarding sibling issues, the reader is referred to Siblings of Children with Autism: A Guide for Families by Sandra L. Harris, Ph.D.¹¹

It is hard to overestimate the impact the diagnosis of ASD has on a family. In Michael D. Power's book, Children with Autism : A Parents' Guide²⁰, Lillian and Joe Tommasone note, "For many parents, this pain is so searing that even years later, the memory automatically causes tears." All parents wish for healthy children and this diagnosis shatters that hope irrevocably; never mind the fantasy of "perfect" children, it shatters the premise that one has a normal child.

There is generally a kind of anxiety surrounding the birth of a baby that the child be healthy and many of these children early on seemed to be fine. To learn that one does not have the normal little girl or boy one thought one had is an especially painful blow.

Compounding the impact of the diagnosis of ASD is the fact that ASD, unlike some other handicaps, affects multiple and diverse aspects of functioning. There may be impairments of cognition, motor skills, language, behavior, and certainly social and emotional interaction. ASD affects the way in which children respond to and relate to their parents. This is most dramatic in those autistic children who act as if people do not exist. There is nothing more chilling than the gaze of a child who appears not to see. Such difficulties tend to make parents feel helpless and as if they don’t matter. Most families become preoccupied with ASD and see it as the central feature of their lives. According to one father, "There isn't an hour that goes by that I don't think about it." Another parent said, "Will I ever be happy again?"

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