There are several different pathways to the diagnosis of Aspergers. Some kids receive the diagnosis fairly early in life, while some individuals are not diagnosed until well into adulthood. In some cases, kids are inaccurately diagnosed with another disorder, (e.g., a language disorder, depression, schizoid personality), and are only later correctly diagnosed with Aspergers. Some kids are considered autistic early in life, but progress well enough to ultimately be diagnosed with Aspergers.
The impact of the diagnosis of Aspergers 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 youngster and are given a diagnosis of autism spectrum disorder (and only later learn their youngster has Aspergers) will experience many of the reactions families with autistic kids have. These reactions are described below. Many families, whose kids progress far enough to no longer warrant an autism diagnosis, experience considerable relief and pride in their and their kid’s accomplishments. At the same time, they still struggle with complex feelings related to their youngster's Aspergers diagnosis. If the diagnosis is made in a parent or other relative when a youngster 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 youngster, but with coming to terms with his own disability as well.
Because many kids with Aspergers were originally felt to have an autism diagnosis, the following remarks address the social and emotional issues for the families of kids diagnosed with an autism spectrum disorder (ASD). These remarks generally refer to adult family members, primarily moms & dads and sometimes grandmoms & dads:
It is hard to overestimate the impact the diagnosis of ASD has on a family. For many moms & dads, this pain is so searing that even years later, the memory automatically causes tears. All moms & dads wish for healthy kids and this diagnosis shatters that hope irrevocably; never mind the fantasy of "perfect" kids, it shatters the premise that one has a normal youngster.
There is generally a kind of anxiety surrounding the birth of a baby that the youngster be healthy and many of these kids 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 it, 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 kids respond to and relate to their moms & dads. This is most dramatic in those autistic kids who act as if people do not exist. There is nothing more chilling than the gaze of a youngster who appears not to see. Such difficulties tend to make moms & dads 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?"
Almost more than spouses, brothers and sisters are thrown together for better or for worse. When a sibling has an autism spectrum disorder, it can complicate that relationship because one youngster lacks social skills and another just can’t figure out “why my brother acts that way.”
It has been two years since my oldest son was diagnosed with high functioning autism, and while we have all come a long way since that day, it has become obvious to us that our younger son (there is only a year between the two) has had to go down a much longer road to get to the point where he can understand his brother.
