Parents must grieve for the loss of the youngster they imagined they had. Moms & dads have their own particular way of dealing with the situation based on a number of factors, e.g., their personality style, life experiences and support systems, among others. Clearly there are a range of stages and coping techniques, such as denial, depression, anger and rationalization. Most families recognize, at least at some level, that there is something seriously wrong with their youngster. To at last be given a name for it, can be a relief.
Certainly, having a clearer understanding of what is wrong affords the opportunity to obtain appropriate services, as well as to begin to think about the youngster in a different, and hopefully more helpful way.
The grief surrounding the diagnosis of Autism Spectrum Disorder (ASD) is compounded by tremendous confusion and uncertainty. Many moms & dads have little understanding of what the diagnosis of ASD entails. Many have the inaccurate perception that all kids with ASD are non-verbal, mentally retarded, extremely remote and possibly self-abusive. Moms & dads must become informed about the varied presentations of ASD. This spectrum is a long one with extremely impaired individuals at one end, but highly capable ones on the other.
While the continuum is long, the potential of any particular youngster is unclear. The course of the disorder is extremely hard to predict at an early age. Some very impaired looking toddlers go on to become high functioning adults, including adults with Aspergers. As one parent said, “The problem is we don’t know if he is going to become a rocket scientist or work in a sheltered workshop.”
After learning of the diagnosis on the autism spectrum, the family is forced not only to come to terms with what may be a devastating handicap, but is thrust almost immediately into making many critically important decisions. To champion the youngster’s cause at the same time one must begin to grieve is truly an untenable position. It is as if one must – overnight – and while grieving – become an expert in ASD and its treatment, despite tremendously conflicting opinions. There is considerable support to the notion that the availability of early, intensive intervention offers the best hope for improvement. While this hope leads to a sense of optimism, the message that services must be implemented immediately and intensively can also feel overwhelming.
In addition to decisions about what kind of schooling their youngster should have, moms & dads must also make decisions about such treatments and services as speech therapy and occupational therapy. What about sensory integration? Auditory retraining? Facilitated communication? Medication? Behavior modification? Many times the approaches seem confusing and even contradictory, with proponents claiming success and even cures. How is a parent, especially one in the midst of grieving, and of desperately hoping for help, supposed to make informed, intelligent choices?
The grief work in the families of kids with ASD is an ongoing process. In most families, there are periods of greater and lesser intensity to the grieving. This intensity may partly relate to developmental issues in the youngster. For example, birthdays or other rites of passage (e.g. Bar Mitzvahs, graduations) may underscore how different the youngster is from his typical peers. Grief intensity may also relate to more personal, individual factors. These factors include such things as one’s own temperament, history, supports and losses.
In addition to the waxing and waning in the intensity of grief, there is typically an alternation of hope and despair. Each new treatment or program for the youngster is often accompanied by an increase in optimism in the moms & dads. If the new treatment or program is deemed unsuccessful, despair may follow, only to be replaced by hope once again, when a new plan is implemented.
Feelings of jealousy and anger are common in many families. These feelings may be directed towards other families who do not have to contend with such stresses or towards other families with disabled kids whose kids are higher functioning or have improved to a greater extent. Many families also experience feelings of anger and frustration towards professionals for a variety of reasons. These reasons include not diagnosing properly, insensitivity, offering false hope or providing inadequate or ineffective treatments or services.
One variant of grief that sometimes occurs in the families of higher functioning kids, particularly those with Aspergers, is the sense that the youngster “should” be doing better than he is because he is so bright. There may be feelings of frustration that “normalcy” is so close, yet still out of reach. For some of these kids and their families, graduation from high school is a particularly stressful time. For the parents, there may be the sadness that their youngster is not yet able to be independent the way their typically developing peers are. Finding work is often challenging for those with Aspergers, and support services are usually quite limited for this population.
Guilt is another common reaction to the diagnosis of ASD in a youngster. Fortunately, the medical and professional community no longer hold to the notion that autism is a result of parental failing (e.g., the concept of “refrigerator mothers” postulated by Bruno Bettleheim in his book The Empty Fortress: Infantile Autism and the Birth of the Self). Today, there is widespread acceptance of the fact that ASD is a genetically based disorder. The possible contribution of additional factors, such as environmental toxins, is currently being studied.
This change in perspective, from parental failing to genetic loading, has not eradicated parental guilt, although in most cases it has lessened it. Many moms & dads wonder what they unwittingly did to contribute to their youngster's ASD. Were they exposed to too much mercury from injections or dental fillings? Was the termite control treatment of their house the culprit?
There have recently been articles in the press on the high incidence of ASD in Silicon Valley. Time Magazine entitled the phenomenon the "Geek Syndrome" in the article "The Secrets of Autism" in May, 2002. This term has led some to speculate that the blame has shifted from “refrigerator mothers” to “geek fathers”. Said differently, believing genetics is the cause does not necessarily eradicate the guilt moms & dads feel. Unfortunately, in some cases, it seems to confirm their fears about having caused or contributed to their youngster’s disability.