The Sensory Experiences of Children with Autism Spectrum Disorders and Complex Needs: A Qualitative Analysis

Background: A recent review demonstrated that sensory issues are common in ASDs, albeit heterogeneous in their nature (Ben-Sasson et al., 2009). This review substantiated accounts that have been written by people with ASD (e.g. Grandin & Scariano, 1996; Williams, 1998), in which the authors describe overwhelming responses to certain stimuli. In order to gain insight about the nature of sensory experiences of children with ASD, we held a focus group for caregivers of children and young adults with autism and complex needs, as this is a particularly hard-to-reach population.

Objectives: To explore both positive and negative aspects of the sensory experiences of children and young adults with autism and other complex needs, from the point of view of their caregivers.  We were also interested in exploring the impact that these sensory experiences can have on the family as well as the individuals themselves.

Methods: A focus group with nine caregivers of eight children and young people with autism and complex needs was conducted. The diagnoses of the children and young people were: autism only (n=2), autism and Down’s Syndrome (n=3), autism and blindness (n=1), autism and cortical dysplasia (n=1), autism and Angelman’s Syndrome (n=1).  Participants were recruited via a gate-keeper who worked for a local charity that supports people with sensory impairment and their families. The focus group was on the topic of ‘Sensory issues in Autism Spectrum Disorders’ and took 1hr 33min to complete.  Data were transcribed then analysed using a general inductive qualitative approach, which is a similar approach to thematic analysis (Thomas, 2006).  The first author coded the transcript, with the second author coding 20% in order to ascertain inter-rater reliability. A Kappa’s Coefficient of .813 was obtained, demonstrating a high level of agreement.

Results: Two main findings emerged from these data.  Firstly, the caregivers described that experiencing unpleasant sensory stimuli was extremely difficult.  This theme was composed of three sub-themes: emotional consequences, physical consequences and social consequences.  Caregivers reported these three sub-themes for both their child and themselves.  Secondly, caregivers discussed how they attempted to ameliorate the impact of sensory experiences (or their repercussions) themselves.  Strategies employed fell into two sub-themes: using positive sensory experiences and employing a variety of distraction or avoidance techniques.

Conclusions:   Firstly, caregivers reported that their children experienced discomfort when faced with certain types of sensory stimuli, which were broadly categorised as physical (e.g. self-harm), emotional (e.g. fear and anxiety) and social (e.g. avoidance of certain environments) implications.  Caregivers also experienced physical (e.g. being physically hurt), emotional (e.g. distress at their child’s discomfort) and social (e.g. being unable to attend family gatherings) consequences of the negative sensory experiences of their child.  Secondly, caregivers mentioned that positive sensory experiences were effective in reducing anxiety or the effect of negative sensory experiences (e.g. massage or watching light streaming through leaves). Caregivers reported trying to integrate their child into their community as much as possible. They also discussed their fears for their child and how aware they had to be of possible triggers for their child.