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?