Family Experiences of Obtaining a Diagnosis of Autism Spectrum Disorder
A lot has changed since my son, now age 16, was diagnosed with “Infantile Autism” at age 3. The 30 seconds it took the pediatrician to scribble that fateful diagnosis on his letterhead after two office visits, is etched in my mind forever. Since then the diagnostic criteria (and names) have changed; we now have a provincial diagnostic standard (ADOS and ADIR); larger communities have assessment teams; and a whole myriad of services are available, some evidence based and some… not so much. But despite the improved diagnostic and treatment services, how have families’ experiences of the process changed?
Both as a parent and professional in the community, I hear many stories: some families talk about how responsive their family doctor was helping to make a referral, while others were told to “wait and see” – the death knell of early intervention services. So what factors influence a family’s experience? In a recent study by Sansosti et al (2012); slow response to parental concerns, leading to a delay in diagnosis was identified as the key factor leading to frustration with the process of obtaining a diagnosis. But why do some families experience a slow response while others do not?
Some factors were rather obvious; for example, rural families experienced challenges as professionals were difficult to access. Lack of experience of the physician and the similarity of symptomatology with other disorders were also cited as leading to the reticence of physicians to refer families to other services. Interestingly and alarmingly, a number of studies in the US and Europe acknowledged additional factors that affect poor response:
- level of education of the parents;
- socio-economic status; and/or
- belonging to an ethnic/racial minority.
The importance of early diagnosis and treatment cannot be understated, yet many children receiving an ASD diagnosis are closer to school age rather than 3 or under. Greater awareness, support and advocacy for families that are trying to obtain a diagnosis are critical, especially for rural, disadvantaged or minority families. How can we help families trying to make their way through this process? I invite you to share your story or ideas as your encouragement or thoughts could change family’s life. If you are a family going through the process now, I encourage you to continue to advocate and to seek the support other families and community agencies.
Elizabeth Sparling, BCBA