Kirby’s study is important for many reasons. Going directly to the source, instead of relying on third party accounts, is what many of us feel is lacking in research.
By Debra Muzikar
The Art of Autism blogs don’t ordinarily focus on autism research. However, a research study about sensory issues of children on the autism spectrum featured in the Journal Autism caught my eye. This research is unique in that children between the ages of 4 and 13 were interviewed. “First-person perspectives of children with autism spectrum disorder are rarely included in research, yet their voices may help more clearly illuminate their needs,” researcher Anne Kirby writes in her paper “Sensory experiences of children with autism spectrum disorder: in their own words”.
What a novel idea – to include voices of autistic people in research!
Research usually is represented by parents, professionals and researchers. Kirby in the journal article states such research may not be taken seriously because research from first-hand accounts of children and people with disabilities is by definition subjective and therefore deemed “unreliable.” Kirby states “the voices of children with disabilities remain notably absent from empirical work.” This may be because researchers are more concerned with fellow researchers’ opinions of their research than their research itself. Kirby quotes the frustration from child-psychologist Waksler (1986): “to take children’s ideas, beliefs, activities and experiences seriously as real and as embodying knowledge is to risk being taken for a fool.”
Researchers who have developed theories about autism, without consideration of autistic people or their parent’s input, has lead to disastrous results in the past. Consider an entire generation of children who were taken away from their parents and put into therapies that isolated them because of Bruno Bettelheim’s “Refrigerator Mother” theory. Certainly Bruno didn’t take into account the child’s perception of the world (or the significance of the mother-child bond in a child’s development). Bruno Bettelheim, in fact, denied a bond existed between the child and the mother as the basis of his theory of the causation of autism.
The topic of autistic people being part of research has been a hot topic in recent past. John Elder Robison writes “‘Autism Observed’ is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.” “Autism Observed” is also what researchers do. The concept of clinical work, which is based on the ideal of looking objectively from the outside, is antithetical to trying to understand the view of looking from the inside out.
Kirby writes “Parent, caregiver, and clinician perspectives are invaluable to describing and understanding these experiences, but these third-person views should not replace — nor should they be confused with – the child’s perspective.”
Because autistic children lack communication and social skills (by definition), the researchers in the Kirby study needed to use some creativity in interviewing the children. The themes of normalizing, storytelling, and describing responses were the ways in which the children communicated.
Kirby writes “Normalizing A group of responses signified that the children either felt or wanted to feel “normal.” In this theme, the children described their experiences in terms of simple likes and dislikes, as changing over time, and as just like other people’s experiences.”
Most children between the ages of 7 and 14 don’t care to be viewed as different. They want to “blend in” with their peers. That autistic children know they aren’t fitting in is noteworthy. The myth that is debunked is autistic children don’t care what others think.
The children were able to grow past some of their sensory sensitivities or at least moderate their responses. For example, one girl expressed pride in the ability to be able to brush her hair without crying. Overcoming challenges was a source of pride for some of the children in Kirby’s research study.
“Many children in the study struggled with directly answering questions about their experiences and so they used creative strategies to share descriptions. Sharing methods included
anecdote, demonstration, internal dialogue, and simile,” Kirby writes.
Here’s an example of storytelling from the research.
I: Well let’s talk about the blender. You said that was a bad sound. Tell me a little bit about that.
C: Well, it’s really, it’s just really loud, and the noise just, um, is horrible.
I: Oh, how does it make your ears feel?
C: Bad, and so I just have to cover them. [Demonstrates] One time, when I was at a theater
camp, where the director reads a story and, and I’d be dressed up in costumes of the characters in the story and get to play them, and I played as many things. I played, I been, and one time, one director, she was a very old woman, was playing a vacuum. I just covered my ears.
Kirby writes “acting out the experience seemed to come more easily to the children than explaining their perspective with words. It also proved to be a very effective storytelling method.”
Kirby points out the ability to use similes in communication is contrary to the current viewpoint that autistic people can’t think in abstract ways.
Kirby states that the children’s “reasoning for why something was a problem was often due to the reaction it caused, rather than the stimuli itself.”
The most common reaction to an aversive experience was covering their ears to block out a loud noise. Some children even associated pain with the loud noise. Hair brushing, teeth brushing, and stepping in sand also were associated with pain and resulted in crying.
The children were aware they could make adaptations to their environment to block out the pain. For example, one child who couldn’t stand the sound of fireworks, said she could view them from inside through a window. Kirby points out “sensory responses are not isolated incidences, but may impact other aspects of children’s lives.”
Kirby writes “Through exploration of how children share about their experiences, we can come to better understand those experiences. These first-person perspectives can contribute to improving how we study, assess, and address sensory features that impact daily functioning among children with ASD.”
Kirby’s study is important for many reasons. Going directly to the source, instead of relying on third party accounts, is what many of us feel is lacking in research. Her observation that fear and anxiety of sensory input can cause children to limit their participation in daily activities is important. Myths about autism are refuted by interviews with the children.
This research has practical implications. Listening to children is important. Strategies can be developed to lessen painful stimuli in autistic childrens’ environments. Understanding the reasons why children behave the way they do in varying situations will help parents and therapists meet the needs of this growing population.
Anne Kirby tells me she is writing her next research paper about adolescents and transition. She interviewed many autistic adolescents for that research. Bravo to a researcher who understands the importance of interviewing the people she is researching.
Kirby, A., Dickie, V., & Baranek, G. (2015). Sensory experiences of children with autism spectrum disorder: In their own words Autism, 19 (3), 316-326 publication here.