Stigma and ASD
An Exploration of Parents’ Experiences
Seamas Feehan Cian Walsh Tom O’ Mahony
Presentation Overview
Background Literature Method Our experiences Themes Findings Research outcomes
Background
Parents’ reluctance to disclose diagnosis to their children
Some parents have a significant grief reaction to diagnosis
Literature
“An attribute or characteristic that results in an individual being socially discredited”
(Goffman, 1963)
Literature – Stigma and ASD
Courtesy Stigma (Goffman, 1963) Stigmatized by affiliation Embarrassment over public incidents Sense of loss regarding ‘normal’ family life Worry about being perceived as failures
Absence of a physical “mark” (hidden nature) Emotion regulation Rigid or Inflexible thinking Obsessional interests
Literature – Stigma and ASD
Coping strategies ‘Passing as normal’ or remaining ‘discreditable’ Sharing information/educating about ASD Researching biomedical knowledge Reducing social circle
Method
Exploratory research Parents of clients that attend ASD Services in
Marian House Information evening followed by three discussion
groups Discussions recorded and analysed Themes developed and evolved over the course
of project
Introductory
MeetingN=28
6 Themes:1)Ignorance2)Personal Power3)Group Bond/Identity4)Discrimination5)Personal Connection6)Milestones
Focus Group 1
N=7
8) Stereotypes
Method
Focus Group 2
N=9
Focus Group 3
N=4
7) Devastation
Presentation of themes
Visual representation
Short synopsis of what we would like to explore
e.g. do parents believe there is a
cultural image of autism, which
has led to the emergence of certain
stereotypes?
Our experiences of the research
As witnesses to the discussion we felt a sense of awe and privilege
Huge interest in the topic
Themes
Stigma
Personal Power
Grief
Personal Investment
Shared Bond
Challenges
Themes: Stigma
Ignorance Stereotype Discrimination Invisibility False Reassurance Paradox re:
awareness (ID or mild/severe
autism)
Themes: Stigma
“...they say that they’re mildly autistic, but they could be moderate or severe and they’d be in our children’s class and I said but my child is autistic and he’s in the school anyway and he’s fine...”
Mother of child with ASD
Story of the incident at the golf club
Themes: Personal Power
Process of change or a journey involved
Coping strategies Regaining a voice Self-care Protectiveness/over-
protectiveness
Acceptance
Themes: Personal Power
“...there’s days...it doesn’t feel as if there’s enough of you to go around but for the most part it forces you to be pretty comfortable in your own sphere...it’s like all the components of a car, they need to be pretty well working...if you neglect one”
Father of child with ASD
Themes: Grief
Overwhelmed Shock Devastation Sense of loss –
milestones Inner turmoil Transient quality
Themes: Grief
Examples of loss (milestones) Self-sufficiency Driving Relationships and marriage Sharing experiences e.g. sport
Themes: Personal Investment
Seeking information following a diagnosis
A call to action, step towards gaining personal power
Themes: Shared Bond
People very open in the focus groups and introductory meeting
Spoke of a benefit from meeting and identifying with other parents
Themes: Shared Bond
“There’s always a reciprocal feeling and an empathy with the people around you ...for me it’s just talking about it really...just swapping stories and just bouncing ideas off other people”
Father of child with ASD
Themes: Challenges
Stories of specific incidents
ASD related problems that parents have to overcome
Findings: the function of stigma
Personal investment in a child means that when a diagnosis occurs, parents experience grief
It also can be a catalyst for change, a call to action Through educating themselves parents gain
personal power A shared bond is developed with others in a
similar situation The concept of stigma is changed. Parents have a
role in reducing stigma in themselves as well as educating others
Findings: the function of stigma
Research outcomes
Chance for parents to meet each other, reflect on stigma, share experience
Examine the way we conceptualise stigma: may have a purpose
Evaluate the role of the ASD services in supporting parents
Contribute to limited body of research on Stigma and ASD
Research outcomes
Presented findings at 40th Annual PSI Conference Follow up research – staff perspective In-service presentations Prepare a paper for publication in a Psychology
Journal Any suggestions?
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