Adults with Autism's Narratives about Their Social Support Network

Background: Research on the narratives of adults with autism highlights the importance of taking into account their subjective experiences for a better understanding of how they manage daily challenges and develop strategies to address them (Hurlbutt & Chalmers, 2002; Milton & Sims, 2016). Support networks (formal and informal) play a key role for the fulfillment of their life choices and the development of their full potential (Tobin, Drager, & Richardson, 2013). Several researches have focused on support networks for parents of children with autism. However, little is known about social support networks as described and perceived by adults living with autism. The network trajectory approach highlights the interactive nature of the social environments in which individuals evolve as well as their agency and capabilities (Carpentier & White 2013). This approach views the individual as already engaged in a social network, despite the fact that modalities in which they enter and maintain social interactions can derogate from what is generally expected in a given social situation.

Objectives: This paper presents the results of an original research based on the network trajectory approach. This exploratory research aimed to explore how adults with autism describe their social support network, describe the resources and the social supports they use to face challenges, and analyze their appreciation of the social support they received and/or hoped for.

Methods: Qualitative interviews were conducted with 12 participants (4 women and 8 men, French Quebecer - Canada, aged from 21 to 64 years old, and diagnosed with Asperger Syndrome or Autism Spectrum Disorder –ASD). A relational analysis of social networks combined with a constant comparative method (Denzin & Lincoln, 2011, Glaser, 1965) was used to analyze the content of the social supports (ex. informative, recreational, approbative) as well as the meaning participants gave to their social relations with their significant ones.

Results: The results show the difficulties and challenges faced by participants, the support they received (or not) from their social support networks, and many situations where they provided support to others. The participants shared some critiques about the support provided by many professionals.

Conclusions: The results of this research and the contribution of the networks trajectory approach will be discussed to better understand the importance of the social support for people with autism by putting forward their capabilities from a self-determination perspective. Proposals will be made to improve the interventions and formal supports offered to them.