Stigma and ASD
Download
1 / 26

Stigma and ASD An Exploration of Parents’ Experiences - PowerPoint PPT Presentation


  • 111 Views
  • Uploaded on

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

loader
I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
capcha
Download Presentation

PowerPoint Slideshow about ' Stigma and ASD An Exploration of Parents’ Experiences' - jude


An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.


- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript

Stigma and ASD

An Exploration of Parents’ Experiences

Seamas Feehan Cian Walsh Tom O’ Mahony


Presentation overview
Presentation Overview

  • Background

  • Literature

  • Method

  • Our experiences

  • Themes

  • Findings

  • Research outcomes


Background
Background

  • Parents’ reluctance to disclose diagnosis to their children

  • Some parents have a significant grief reaction to diagnosis


Literature
Literature

“An attribute or characteristic that results in an individual being socially discredited”

(Goffman, 1963)


Literature stigma and asd
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 asd1
Literature – Stigma and ASD

  • Coping strategies

    • ‘Passing as normal’ or remaining ‘discreditable’

    • Sharing information/educating about ASD

    • Researching biomedical knowledge

    • Reducing social circle


Method
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


Method1
Method

Introductory Meeting

N=28

  • 6 Themes:

  • Ignorance

  • Personal Power

  • Group Bond/Identity

  • Discrimination

  • Personal Connection

  • Milestones

8) Stereotypes

7) Devastation

Focus Group 1

N=7

Focus Group 2

N=9

Focus Group 3

N=4


Presentation of themes
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
Our experiences of the research

  • As witnesses to the discussion we felt a sense of awe and privilege

  • Huge interest in the topic


Themes
Themes

  • Personal Investment

  • Shared Bond

  • Challenges

  • Stigma

  • Personal Power

  • Grief


Themes stigma
Themes: Stigma

  • Ignorance

  • Stereotype

  • Discrimination

  • Invisibility

  • False Reassurance

  • Paradox re: awareness

  • (ID or mild/severe autism)


Themes stigma1
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
Themes: Personal Power

  • Process of change or a journey involved

  • Coping strategies

    • Regaining a voice

    • Self-care

    • Protectiveness/over-protectiveness

  • Acceptance


Themes personal power1
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
Themes: Grief

  • Overwhelmed

  • Shock

  • Devastation

  • Sense of loss – milestones

  • Inner turmoil

  • Transient quality


Themes grief1
Themes: Grief

  • Examples of loss (milestones)

    • Self-sufficiency

    • Driving

    • Relationships and marriage

    • Sharing experiences e.g. sport


Themes personal investment
Themes: Personal Investment

  • Seeking information following a diagnosis

  • A call to action, step towards gaining personal power


Themes shared bond
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 bond1
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
Themes: Challenges

  • Stories of specific incidents

  • ASD related problems that parents have to overcome


Findings the function of stigma
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



Research outcomes
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 outcomes1
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?


ad