Objectives <p>A different communication style, sudden changes in routine, sensory sensitivities, or emotional overload can sometimes lead to behavioural reactions in autistic children. This can trigger emotional dysregulation, resulting in rapid mood changes, meltdowns, self-injury, and/or reactive behaviours that are sometimes labelled as ‘aggressive behaviours’, for example, biting. These types of behaviours can result in stigma for both the child and their parents. We aimed to explore how parents interpret their experiences raising an autistic child who exhibits aggressive behaviours, using a phenomenological epistemological approach.</p> Methods <p>Eight parents of male children who had received a diagnosis of autism completed a semi-structured interview. The transcripts were analysed using interpretative phenomenological analysis.</p> Results <p>One superordinate theme, ‘Changed expectations’, overarched the five subordinate themes: <i>It’s not the life that was anticipated; Isolation; What does the future hold?; Stigma;</i> and <i>Finding the positive.</i> Parents felt grief for the life they expected compared to the one they were experiencing. Initially, they blamed themselves for their child’s challenging behaviours before accepting that society’s expectations were not always right for their family. Parents also reported feelings of empathy, patience, and joy within themselves and their child.</p> Conclusions <p>Participants in the study shared that their lived experiences differed from their expectations, often shaped by stigma from themselves, their families, and broader society. They reported social isolation but also some positive personal psychological growth. Future research should explore the lived experience of autistic children who exhibit aggressive behaviours, the stigmas associated with these behaviours, and how these children can be supported. This exploration should be guided by appropriate methodologies developed through co-production with autistic individuals.</p>

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“People Thought I Was a Dreadful Mother”: Stigma Experienced by Parents with an Autistic Child Who Exhibits Aggressive Behaviour

  • Linda Swaab,
  • Linda E. Campbell,
  • Meredith Tavener,
  • Jane Goodwin

摘要

Objectives

A different communication style, sudden changes in routine, sensory sensitivities, or emotional overload can sometimes lead to behavioural reactions in autistic children. This can trigger emotional dysregulation, resulting in rapid mood changes, meltdowns, self-injury, and/or reactive behaviours that are sometimes labelled as ‘aggressive behaviours’, for example, biting. These types of behaviours can result in stigma for both the child and their parents. We aimed to explore how parents interpret their experiences raising an autistic child who exhibits aggressive behaviours, using a phenomenological epistemological approach.

Methods

Eight parents of male children who had received a diagnosis of autism completed a semi-structured interview. The transcripts were analysed using interpretative phenomenological analysis.

Results

One superordinate theme, ‘Changed expectations’, overarched the five subordinate themes: It’s not the life that was anticipated; Isolation; What does the future hold?; Stigma; and Finding the positive. Parents felt grief for the life they expected compared to the one they were experiencing. Initially, they blamed themselves for their child’s challenging behaviours before accepting that society’s expectations were not always right for their family. Parents also reported feelings of empathy, patience, and joy within themselves and their child.

Conclusions

Participants in the study shared that their lived experiences differed from their expectations, often shaped by stigma from themselves, their families, and broader society. They reported social isolation but also some positive personal psychological growth. Future research should explore the lived experience of autistic children who exhibit aggressive behaviours, the stigmas associated with these behaviours, and how these children can be supported. This exploration should be guided by appropriate methodologies developed through co-production with autistic individuals.