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Stigma and ASD An Exploration of Parents’ Experiences

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

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Stigma and ASD An Exploration of Parents’ Experiences

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  1. Stigma and ASD An Exploration of Parents’ Experiences Seamas Feehan Cian Walsh Tom O’ Mahony

  2. Presentation Overview • Background • Literature • Method • Our experiences • Themes • Findings • Research outcomes

  3. Background • Parents’ reluctance to disclose diagnosis to their children • Some parents have a significant grief reaction to diagnosis

  4. Literature “An attribute or characteristic that results in an individual being socially discredited” (Goffman, 1963)

  5. 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

  6. Literature – Stigma and ASD • Coping strategies • ‘Passing as normal’ or remaining ‘discreditable’ • Sharing information/educating about ASD • Researching biomedical knowledge • Reducing social circle

  7. 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

  8. 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

  9. 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?

  10. Our experiences of the research • As witnesses to the discussion we felt a sense of awe and privilege • Huge interest in the topic

  11. Themes • Personal Investment • Shared Bond • Challenges • Stigma • Personal Power • Grief

  12. Themes: Stigma • Ignorance • Stereotype • Discrimination • Invisibility • False Reassurance • Paradox re: awareness • (ID or mild/severe autism)

  13. 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

  14. Themes: Personal Power • Process of change or a journey involved • Coping strategies • Regaining a voice • Self-care • Protectiveness/over-protectiveness • Acceptance

  15. 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

  16. Themes: Grief • Overwhelmed • Shock • Devastation • Sense of loss – milestones • Inner turmoil • Transient quality

  17. Themes: Grief • Examples of loss (milestones) • Self-sufficiency • Driving • Relationships and marriage • Sharing experiences e.g. sport

  18. Themes: Personal Investment • Seeking information following a diagnosis • A call to action, step towards gaining personal power

  19. Themes: Shared Bond • People very open in the focus groups and introductory meeting • Spoke of a benefit from meeting and identifying with other parents

  20. 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

  21. Themes: Challenges • Stories of specific incidents • ASD related problems that parents have to overcome

  22. 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

  23. Findings: the function of stigma

  24. 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

  25. 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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