Experiences of Parents of Specialist Peer Mentored Autistic University Students

ABSTRCT

Background: Parents continue to support to autistic university students, and consequently, experience considerable stress.

Aim: To explore the experiences of parents of specialist peer mentored university students and to examine these using the ICF as a theoretical framework.

Method: Thirteen semi-structured interviews were completed and analyzed using thematic analysis. Directive content analysis linked the data to the ICF core set for autism spectrum disorders (ASD).

Results: Five interrelated themes emerged: The mentoring relationship is a facilitator, Developing skills for university, Mentoring changes lives, Mentoring is not a substitute for other supports, and University is an emotional rollercoaster. Specialist peer mentoring was linked to Activity and Participation (44%) and Environmental factors (32%) of the ICF core set for ASD.

Conclusion: These results add to the specialist peer mentoring evidence-base, and indicate perceived benefits for autistic university students and their parents. An unintended consequence was that parents broadened their participation in activities.

KEYWORDS:

• Autism spectrum disorder
• parents
• parent–child relationship
• mentoring
• supports
• university

Acknowledgments

This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC) [project number 3.032RS], established and supported under the Australian Government’s Cooperative Research Centres Program. The authors would also like to acknowledge the contribution of an Australian Government Research Training Program Scholarship in supporting this research. This work would be impossible without students with ASD and peer mentors, and we are grateful for their involvement. We would like to acknowledge Dr Jasmine McDonald and Dr Theresa Kidd for their support in this study. The authors would like to thank Dr Susan Taylor for her assistance with this project. Finally, we would like to thank the Autism CRC’s reference group for all of their support and invaluable advice in this research.

Conflicts of interest

Sven Bölte discloses no financial or conflict of interest related to this article. Sven Bölte discloses that he has in the last 5 years acted as an author, consultant or lecturer for Shire, Medice, Roche, Eli Lilly, Prima Psychiatry, GLGroup, System Analytic, Ability Partner, Kompetento, Expo Medica, and Prophase. He receives royalties for textbooks and diagnostic tools from Huber/Hogrefe, Kohlhammer and UTB.

All authors declare that they have no potential or competing conflicts of interest.

Additional information

Funding

This work was supported by the Cooperative Research Centre for Living with Autism [project number 3.032RS].