Children diagnosed with autism often have distinctive sensory experiences, such as being ultra sensitive to noise, or finding enjoyment in repeated, unusual sensory stimulation. However, much of what we know about these experiences comes from the testimony of parents, researchers and clinicians. Now Anne Kirby and her colleagues have published the first report of autistic children’s sensory experiences, based on these children’s own accounts. As the authors say, “children’s voices are still rarely heard or taken seriously in the academic arena,” so this is an innovative approach.
Twelve autistic children aged 4 to 13 were interviewed in their homes. The children’s autism varied in severity, but they were all capable of conducting verbal interviews. The researchers used a range of techniques to facilitate the interviews, such as playing family video clips of the children to prompt discussion of specific episodes. Kirby and her team said their first important finding was to demonstrate the feasibility of interviewing young children with autism.
Careful analysis of the transcripts from the interviews revealed three key themes. The first of these – “normalising” – showed how the children considered many of their experiences to be just like other people’s, as if rejecting the notion that there was something distinct or odd about their behaviour, and also showing a certain self-consciousness (contrary to existing research that suggests self-consciousness is impaired in autism).
Interviewer: What about things you don’t like to touch or feel on your skin?
Child: Um, sharp stuff.
I: Sharp stuff? (smiles) Yeah, exactly.
C: Um, like most people do
C: Um (pause), hot stuff.
C: Like, burning hot, like pizza that just came out of the oven.
I: Do you have a favourite thing that you like to eat?
C: Uh, pizza.
I: Yeah? When it’s not too hot, right?
C: Right. That’s what most people say.
The children also expressed satisfaction at learning to cope with problematic sensory sensitivity – such as a dislike of brushing hair. “What’s different about having your hair brushed now?” the interviewer asked. “That I look beautiful,” the thirteen-year-old replied. The children appeared motivated to adapt to their sensitivities, so as to participate in normal daily activities. The researchers said this is contrary to past findings that suggest people with autism don’t want to be “neurotypical” (perhaps such feelings can emerge later).
Another theme was the methods the children used to recount their experiences, including using anecdotes, demonstrating (e.g. by imitating the noise of the car engine, or mimicking a disgust reaction), by repeating their own inner speech from particular experiences, and, in the case of two children, by using similes. On that last point, one child likened eating spinach to eating grass, another likened loud voices to a lion’s roar. “The use of simile as a storytelling method seemed to suggest a sort of perspective-taking that is not expected in children with autism” the researchers said.
The final theme concerned the way the children frequently talked about their sensory experiences in terms of their responses to various situations and stimuli. For example, the children spoke of their strategies, such as covering their ears, watching fireworks through a window, and watching sport on TV rather than in the arena. They also told the interviewers about their uncontrollable physical reactions, such as the pain of loud noises or teeth brushing. When he hears loud music, one little boy said: “it feels like my heart is beating, and um, my, uh, my whole body’s shaking. Mmm and uh, and my eyes, uh, they start to blink a lot.” The children’s reactions were often tied to their fear of particular situations or objects, such as inflated balloons. It feels like “the unknown is gonna come,” said another child.
The study has obvious limitations, such as the small sample and lack of a comparison group, so we can’t know for sure that children without autism wouldn’t come up with similar answers. However, the research provides a rare insight into autistic children’s own perspective on their sensory worlds. “Through exploration of how children share about their experiences, we can come to better understand those experiences,” the researchers said, ultimately helping “how we study, assess, and address sensory features that impact daily functioning among children with autism.”
Kirby, A., Dickie, V., & Baranek, G. (2015). Sensory experiences of children with autism spectrum disorder: In their own words Autism, 19 (3), 316-326 DOI: 10.1177/1362361314520756
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