'Walk a Mile in My Shoes': Researching the Lived Experience of Mothers of Children with Autism
Gill, Jessica, Liamputtong, Pranee, Journal of Family Studies
In this paper, we describe the methodology, methods and underlying philosophy for our research project-in-progress, which explores the experiences of mothers who have a child with autism. We begin by presenting background relevant to the study, noting that there is little previous research examining (a) how these mothers perceive themselves as mothers and (b) their lived motherhood experiences. Our study aims to give voice to these women by providing them with the opportunity to do so by means of methods specifically tailored to their circumstances. We argue that to achieve our aim, a qualitative research approach, which includes a combination of in-depth interviews and a solicited diary method, is ideally suited for the purposes. It is our contention that it is important for researchers to provide accurate information to the community about mothers who have children with autism, thereby fostering a greater understanding and empathy in society for those involved with or affected by the disability. To this end, it is our intention to present this Practice Paper to stimulate discussion about our approach, which has at its roots phenomenology and feminist theory, and to provide a model for future research.
Keywords: motherhood; children with autism; lived experience; qualitative research
Background and purpose
Autism is best described as a group of disorders with a similar pattern of behaviour in three key areas--social interaction, communication and imaginative thought (Autism Victoria 2009). With regard to social interaction, the person may appear aloof and indifferent to other people. A difficulty with communication is both verbal and nonverbal, resulting in problems with interpreting gestures, facial expressions and tone of voice, as well as simply words themselves. Flexibility of thought and a range of imaginative activities are limited, which is often evident through a lack of development in play (Eisenmajer 2006).
Recently, the way people think about autism has changed. The currently favoured term is 'Autism Spectrum Disorder', with the word 'spectrum' used because no two people with an Autism Spectrum Disorder are exactly alike. At one end of the spectrum, there is the low-functioning group that is described as aloof. The middle-functioning group are passive individuals, and the high-functioning group, often also labelled as Asperger's syndrome, comprises active individuals who are a little odd (Eisenmajer 2006). Both high- and low-functioning forms are conditions that are extremely demanding and frustrating for the individuals themselves and their family members.
Due to the complexity of the disability, the process of obtaining accurate diagnosis and treatment is often long and therefore frustrating for the parents. The lack of known causes for this disability also brings up issues of self-blame for parents, where it has been found that mothers are more likely to blame themselves than fathers (Grey 1993, 2002; Kingston 2007). Autistic children appear to be physically normal, yet suffer from a disability that is extremely pervasive. The normal physical appearance of the autistic child and the relative lack of public knowledge about the disorder mean that the parents of the autistic child may experience hostile public reaction to their child's inappropriate behaviour.
Past literature has looked at the coping abilities of both mothers and fathers of autistic children. Studies conducted by Grey in both 1993 and 2002 looked at the perceptions of stigma of parents with autistic children. Both studies found that there was a strong tendency for mothers to feel more stigmatised by the community than fathers. The studies also acknowledged that autism is more likely to be stigmatised within the community than other disabilities, such as Down syndrome, due to the 'normal' physical appearance of the child. The studies also reviewed the gender roles of both mothers and fathers. …