The Practice, Research and Treatment Centre on Autism (PRTA) adopts a comprehensive multi-disciplinary approach to its delivery of services to people affected by Autism Spectrum Disorders (ASD), with input from a Clinical Psychologist, Speech Therapist, Occupational Therapist, Physiotherapist, and Social Worker in providing assessment and effective intervention. Through designing intervention programmes that tailor to an individual’s cognitive profile and needs, our centre aims
to assist every individual with ASD to reach their potential and develop to the fullest extent possible.
We once came across a woman who brought her 5-year-old boy to PRTA for an ASD assessment. During the intake session, she told us about the frustrating experiences she had before coming to our centre. She noticed that her child was “quite different from his peers” as early as his third birthday: he appeared to be an extremely quiet kid who never talked and he had a special interest in aligning numbers in rows which could occupy him for hours. She sought advice from a pediatrician, who was the first to suggest an autism diagnosis for her son.
“My boy just isn’t talking yet.” She was not convinced about the diagnosis. She sought a second opinion from a clinical psychologist who confirmed the ASD diagnosis.
“My boy was just having a bad day on the day of the assessment. He slept poorly the night before.” Dubious of the results, she shopped around to different professionals, yet all came to the diagnosis of ASD. Our centre was the sixth stop for this mother.
This scenario is not uncommon in Hong Kong. A survey regarding autistic persons conducted in Shengzhen in 2006 revealed that 29 out of 149 families (19.4%) involved in the study had arranged at least 6 different assessments of their kids. Many parents go through the normal stages of denial, anger, bargaining, and depression, before reaching acceptance of their child’s ASD diagnosis. This is particularly true of those who have had high hopes for their kids or those
who have the kid as their first born. Shock, denial, anger, and depression are the common psychological stages that parents experience when they were bombarded by the diagnosis of ASD. “Professional shopping” may just be one manifestation of one or more of these stages.
To us, the woman’s story signaled the need to work through acceptance issues for many families. We recognized that the results of our assessment would just become another “misdiagnosis” in her future long list of “professional-shopping” experiences if she were not able to work through and accept it.
In our work with this mother, our social worker helped her understand that ASD is in fact not a “terminal illness” as believed by many. With support, the woman finally revealed her deepest fear and feelings of helplessness. Our social worker also came to understand how the family’s dynamics and other relevant stressors (e.g. uncertainty in how to disclose the diagnosis) may have impeded her acceptance of the diagnosis. The efforts of our staff and the participation of other families from our practice who shared their own successful experiences reinforced the woman’s belief that there is hope for improvement with systematic and effective intervention. She finally ceased shopping for professionals and made up her mind to arrange for
intervention for her son at our center.
The intensity and duration of the difficult psychological stages parents experience before reaching acceptance may vary across different families. While it is normal to feel overwhelmed, one must always keep in mind that denial may thwart timely intervention for our children.
Most parents of autistic children need time to adapt to a new way of life. Active listening and showing positive regard are helpful ways to get parents through the hardest times. In particular, spousal support may be one of the best and most powerful tools that can fill parents with hope in embarking on their journey.
We understand the parenting hardships that come with raising a child with autism. Let’s celebrate these parents’ unrequited devotion to their children and salute to them around the globe.
The Multidisciplinary Team
The Practice, Research & Training Centre on Autism (PRTA)
The Neighbourhood Advice-Action Council
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.