'Walk a Mile in My Shoes': Researching the Lived Experience of Mothers of Children with Autism

By Gill, Jessica; Liamputtong, Pranee | Journal of Family Studies, December 2009 | Go to article overview

'Walk a Mile in My Shoes': Researching the Lived Experience of Mothers of Children with Autism


Gill, Jessica, Liamputtong, Pranee, Journal of Family Studies


ABSTRACT

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. …

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • A full archive of books and articles related to this one
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

'Walk a Mile in My Shoes': Researching the Lived Experience of Mothers of Children with Autism
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Help
Full screen

matching results for page

    Questia reader help

    How to highlight and cite specific passages

    1. Click or tap the first word you want to select.
    2. Click or tap the last word you want to select, and you’ll see everything in between get selected.
    3. You’ll then get a menu of options like creating a highlight or a citation from that passage of text.

    OK, got it!

    Cited passage

    Style
    Citations are available only to our active members.
    Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

    1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

    Cited passage

    Thanks for trying Questia!

    Please continue trying out our research tools, but please note, full functionality is available only to our active members.

    Your work will be lost once you leave this Web page.

    For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

    Already a member? Log in now.