Dr Huff asked me to write short piece for Sixty Second Parent about parents’ responses to hearing that their child has autism. This is an interesting and helpful assignment for a clinician like me, an exercise in empathy and understanding that may help me in my clinical care as I discuss the diagnosis of autism with parents.
Of course, parents are better able to articulate their feelings and thoughts. All I can do is to try to walk in their shoes and understand their responses, so that they can guide me in my efforts to provide what they need. There are many excellent and powerful firsthand accounts from parents, such as Parenting Across the Spectrum by Morrell and Palmer and The Siege by Park.
My colleague Dr Steve Love says: “If you’ve met one child with autism…you’ve met one child with autism,” implying the obvious truth that children with autism spectrum disorder are not all the same. Similarly, their parents are also very different: in their knowledge about autism, in their acceptance of the diagnosis, in their trust of the medical establishment, in their feelings of empowerment, in their social supports and in their cultural beliefs. Any attempt to summarize parents’ responses into a few typical patterns is bound to miss the mark.
Having said that, I have had the unique privilege over the past 25 years of being with countless parents while a new diagnosis of autism is made, and I will try to make a few observations, based on these encounters. First, as awareness of the autism spectrum has increased, parents of a child with delays in social communication or repetitive behaviors are thinking about autism as they try to understand their child. It is often the parents who raise concerns about possible autism, long before teachers, therapists or doctors. Hence, by the time the diagnosis of autism is made in clinics such as the Huff Center, parents may not be surprised. The diagnosis may confirm and validate parents’ own observations. I often hear parents express a kind of relief that reflects the certainty of having an answer at last to the perplexing and frightening uncertainties, a sense that “at least we know what we are dealing with.” Some parents may be ready at that point to move on beyond diagnosis to questions of treatment, saying “OK, so now what do we need to do?”
Upon hearing the autism diagnosis for the first time, some parents cling to their beliefs that their child’s behavior is explained by something other than autism. Generally, a careful and thorough evaluation, including consideration of other possible diagnoses, is sufficient to overcome a parent’s initial resistance or denial. Not uncommonly, two parents may be out-of-synch with regard to their acceptance of a child’s autism diagnosis. In such circumstances, it is important to explore both parents’ perspectives, and help them to come to a shared understanding. Such encounters in the clinic may take time, and it is often helpful to schedule a separate visit to talk in more depth with both parents.
In my experience, there was much more fear and stigma associated with an autism diagnosis 10-20 years ago than today. Growing understanding of the genetics of autism has helped to put some of these fears to rest, and parents are much less likely to feel guilty or ashamed to have a child with autism. Increased availability of treatments specifically for children with autism have lessened the sense of abandonment and isolation that parents previously experienced. The growing awareness of mild autism spectrum disorder (including Asperger syndrome) has helped to validate the positive qualities and attributes of people with autism spectrum disorders (ASD). Although these conditions can be disabling, there is growing appreciation of the rich experiences and quality of life among those with ASD, and the many ways in which people with ASD contribute to society as a whole.
As clinicians, the message is clear. We need to continually strive to provide relationship-centered care, with an emphasis on empathy, respect, and support. With the demands of a busy clinic, we sometimes respond to time pressures by trying to deliver too much information and cover too much ground. We must not rush through these critically important encounters, and we need to take the time to understand parents’ responses. Also, we need to steer parents towards other parents who can provide support. In our clinics, the Family Support Network has been extremely helpful in this regard.