The Reality of Executive Function Difficulties for Autistic Adolescents: Personal and Parental Perspectives

Poster Presentation
Saturday, May 4, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
L. Kenny1, A. Remington2 and E. Pellicano3, (1)Centre for Research in Autism and Education (CRAE), London, United Kingdom of Great Britain and Northern Ireland, (2)UCL Centre for Research in Autism and Education, London, United Kingdom, (3)Macquarie University, Sydney, Australia
Background: The executive function (EF) abilities of autistic people have been extensively researched. Nevertheless, our ability to know whether these difficulties are relevant to the lives of young autistic people remains limited by the methodologies hitherto applied in EF research. Specifically, the voices of young autistic people are completely absent from the literature pertaining to EF in autism.

Objectives: The current study sought to directly examine the views and experiences of autistic adolescents and their parents towards their executive skills. It also sought to understand the perceived consequences of any EF difficulties and whether autistic young people conceive of their EF difficulties as related to being autistic or not.

Methods: Eleven autistic adolescents (11 male, 1 female), aged 12 - 19 years, and eight of their parents (all mothers) participated in separate, semi-structured interviews. Participants were asked several open-ended questions about their perceptions of their own/their children’s EF abilities, with a focus on their higher order abilities, such as the ability to manage their time, to multitask, to retain information and to adapt flexibly to changes in task demands. Transcripts were analysed using Thematic Analysis from an inductive (bottom-up) perspective where themes were created within a ‘contextualist’ framework of critical realism.

Results: A central theme identified in the data was that EF is dependent on contextual and motivational factors and so is not fixed. While parents tended to laud their children’s increased desire for independence, they were also acutely aware that with increasing age, the societal expectations placed on their children continue to change and parents often worried that increasing societal expectations outpaced their child’s developments in EF. Young autistic people were often very accepting of their cognitive differences, simply reflecting on them as intrinsic aspects of who they are. Finally, the young people interviewed acknowledged that they drew heavily on the support of family and friends, who often provided an external locus of EF, and they highlighted that there was often a mismatch between the supports and accommodations they were offered and the types of executive difficulties they experienced.

Conclusions: The insights from this study could help redress the research and practice gap that currently exists about EF in autism. Specifically, in future, EF and autism researchers should; (i) develop assessments that tap the specific difficulties described by autistic people (e.g., getting started on a task or decoding multi-step instructions), (ii) measure performance on an assessment and measure the contextual factors like motivation and anxiety that are likely implicated in performance and (iii) be sensitive toward those who do not want support or interventions that might change their cognitions, and in turn, change their identity. On a broader scale, the current study demonstrated the value of supplementing positivist research into the cognitive processes of autistic people with phenomenological methods, not only to better understand the lived experience of those we study, but also to facilitate the development of an evidence base that more accurately captures these experiences and, as a result, better serves autistic people’s needs.