Purpose <p>Quality of life (QoL) is a subjective construct, influenced by an individual’s values, priorities and goals, yet little research considers the views of Autistic people regarding what is important for living a ‘good life’. This study addresses the question: “What do Autistic adolescents describe is important for them to live a ‘good life’?”.</p> Methods <p>42 Autistic adolescents aged 10–17 years (52.4% girls, 45.2% boys, 2.4% non-binary gender) shared their views about what is important for their QoL through written or spoken responses in either a survey or interview. Autistic adolescents were recruited via social media advertisements directed towards parents.</p> Results <p>We identified five themes reflecting the priorities of Autistic adolescents: being understood and accepted, connecting deeply with others, engaging in strengths and passions to experience achievement and develop self-worth, having agency to manage their own needs, and being consulted and listened to. These themes highlight specific aspects within the broad concept of QoL that are most important for Autistic adolescents.</p> Conclusion <p>This study adds to the conceptualisation of QoL for Autistic children and adolescents by eliciting directly the views of Autistic adolescents. The findings can inform the development of individual supports and increase understanding of Autistic perspectives in research and the community, which better enable Autistic adolescents to live a ‘good life’. Further research should extend this work to include younger Autistic children and those with higher support needs.</p>

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“Support Me to Take the Steps I Need, to Live the Life I Want, in Ways That Work for Me”: Perspectives of Autistic Adolescents on What is Important for Their Quality of Life

  • Kathryn Ambrose,
  • Kate Simpson,
  • Elizabeth Pellicano,
  • Melanie Heyworth,
  • Jacquiline den Houting,
  • Janneke Roth,
  • Dawn Adams

摘要

Purpose

Quality of life (QoL) is a subjective construct, influenced by an individual’s values, priorities and goals, yet little research considers the views of Autistic people regarding what is important for living a ‘good life’. This study addresses the question: “What do Autistic adolescents describe is important for them to live a ‘good life’?”.

Methods

42 Autistic adolescents aged 10–17 years (52.4% girls, 45.2% boys, 2.4% non-binary gender) shared their views about what is important for their QoL through written or spoken responses in either a survey or interview. Autistic adolescents were recruited via social media advertisements directed towards parents.

Results

We identified five themes reflecting the priorities of Autistic adolescents: being understood and accepted, connecting deeply with others, engaging in strengths and passions to experience achievement and develop self-worth, having agency to manage their own needs, and being consulted and listened to. These themes highlight specific aspects within the broad concept of QoL that are most important for Autistic adolescents.

Conclusion

This study adds to the conceptualisation of QoL for Autistic children and adolescents by eliciting directly the views of Autistic adolescents. The findings can inform the development of individual supports and increase understanding of Autistic perspectives in research and the community, which better enable Autistic adolescents to live a ‘good life’. Further research should extend this work to include younger Autistic children and those with higher support needs.