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The Diagnostic Odyssey: Parents' Experiences of the Diagnosis of Autism

Thursday, 2 May 2013: 09:00-13:00
Banquet Hall (Kursaal Centre)
J. S. Singh, Georgia Institute of Technology, Atlanta, GA
Background: For parents of children diagnosed with autism spectrum disorder (ASD), the diagnosis process can be a time of incredible uncertainty, stress and concern. Despite the growing number of parents receiving a diagnosis of ASD for their child, there is limited understanding about parents’ experiences of life before, during, and after receiving an ASD diagnosis.

Objectives: The objectives of this research were to identify the diagnosis process through the perspective of parents who have a child diagnosed with ASD. Based on parents’ experiences surrounding their pre-diagnosis concerns, the process of getting a diagnosis, and the post-diagnosis trajectory, this paper details what clinical professionals describe as the diagnostic odyssey. This concept encompasses the processes parents go through to understand the problems their child is experiencing in order to get them the appropriate help they need.

Methods:   This paper is based on in-depth semi-structured interviews with parents who have a child diagnosed with autism (N=28). Each interview lasted from 1-2 hours, was tape recorded, transcribed, and coded for major themes using grounded theory methods.   

Results: The findings reveal the complexity of the diagnostic odyssey and the struggles and various levels of uncertainty parents experience throughout the diagnosis process. In the pre-diagnosis phase, most parents suspected something was wrong, however their pediatrician, as well as other family members, often did not share their levels of concern. Once a child was given a diagnosis of ASD, parent’s described their uncertainties associated with arbitrary labels given to their children such as “not quite autism”, “pervasive developmental disorder autistic like”, or “mild autism.” For most parents, the overwhelming news of an ASD diagnosis was coupled with limited direction on how to proceed in helping their child. Hence, the parents themselves largely drove the post-diagnosis trajectory. Parents emphasized how they had to do their own research, felt there were limited resources they could draw upon, and were responsible for locating, assessing, and coordinating everyone involved in their child’s care.

Conclusions: The parents’ experiences in the diagnostic odyssey demonstrate a need for an increased focus on educating professionals (e.g., pediatricians, educators, and others) to recognize early signs of autism and be able to refer parents to appropriate diagnostic services. Once the diagnosis is made, there is also a critical need for clear guidelines on how parents should proceed forward despite arbitrary labels and uncertainties in different treatment outcomes. Although there are resources available through national organizations, parents also need help navigating their particular local resources, especially with regard to educational services. Given the rise in ASD prevalence in the last decade, these issues warrant attention from the autism research community.

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