Kid's Work Therapy Blog

On the Importance of Listening to Children with Autism Spectrum Disorder

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The majority of research articles about children with autism spectrum disorder (ASD) focus on the scientific and medical underpinnings of ASD, the perspectives of the caregivers, or the observations of the therapists and clinicians. Using questionnaires, interviews, and observations, these articles provide stakeholders and providers with valuable information that should inform various treatment programs. However, rarely is the perspective of the children included in a systemic fashion. In a recent issue of Autism: The International Journal of Research and Practice, researchers at the University of North Carolina studied the first-person perspectives of children who have been diagnosed with ASD. According to Anne K. Kirby, Virginia A. Dickie, and Grace T. Baranek, one of the reasons that the first-person perspectives of children with ASD have not been taken seriously is because of a bias against the lived experiences of being “both children and people with disabilities.” Kirby and her colleagues argue that there are benefits to understanding the viewpoint of kids with ASD and a careful and considered approach to this form of research is needed.

Using a qualitative approach, Dr. Kirby and her team interviewed 12 children (ages 4 to 13) diagnosed with ASD. They admit that their study cannot be generalized to all people diagnosed with ASD given the small number of children included, but they do note that their approach validates the notion that first-person perspectives should be examined for their unique “unidentified insights” that other approaches do not capture adequately. It is also worth pointing out that the research team had access to additional information beyond the interviews alone.

One of the key insights revealed by the study was that it is indeed possible to gain additional information from the children directly. The older perspectives that dismiss these first-person accounts should be modified in light of these results. Additionally, the researchers discovered three themes that emerged from their data: “normalizing, storytelling, and describing their responses to their sensory experiences.”

Many of the responses received indicated a strong desire on the part of the children feeling or wanting to feel “normal.” In this sense, children with ASD have a great deal in common with other populations. The researchers were surprised to find that children with ASD often thought of themselves as “normal,” a finding that contrasts with studies of adults who have been diagnosed with ASD. If children struggled to answer questions in an abstract fashion, they often relied on stories to articulate their thoughts about their sensory experiences. Some used anecdotes while some chose to demonstrate their points. The authors report the answer of one child who was struggling with the excessive noise of a blender. To further explain things, the child recalled an event at a theater camp where the noise from a vacuum was similarly loud. Rather than offering an abstract answer about noise sensitivity, narrative was a primary means of expression. Finally, the researchers observed that children often describe their reactions to sensory experiences as the method of evaluating the experience rather than the experience itself. In other words, the children did not dislike noise because noise is perceived as being inherently bad, but rather, they disliked it because it elicits a particular reaction. The children in this study were acutely aware of needing to adapt to their surroundings. Some simply accepted that rather than trying to stop the generation of unpleasant noises, they simply needed to leave the room or cover their ears.

Although not a perfect study, it appears to make the case that a first-person perspective from children is useful. If you wish to discuss further how your child is similar to the children mentioned in this study and how we may incorporate some of these insights into day-to-day practices, please feel to contact Dr. Stephanie Foster.

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