Research Aims

We are interested in learning how professionals in health, education, and social services can more effectively support parents and caregivers of autistic children.

The goal of our research is to identify specific behaviors, communication strategies, and practices that families find helpful or challenging in their interactions with professionals.

Findings will directly inform the development of professional training designed to promote more responsive, family-centered autism services.

How to participate

Parents and primary caregivers of autistic children (of any age) are invited to complete a one-time, anonymous online survey.  The questionnaire takes approximately 25 minutes and can be completed on a computer, tablet, or smartphone.   Please click the questionnaire link or QR code below!

→ Questionnaire in English

→ Questionnaire en français

→ Fragebogen auf Deutsch

→ Questionario in italiano

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Why is this research important?

While autism research has largely focused on child progress and outcomes, comparatively less attention has been given to how parents experience and navigate the services their children receive.

Parent satisfaction and parent wellbeing may not only be key outcomes in their own right, but also function as a mediator or moderator of intervention success, influencing how well families engage with services and how children respond to them. A small but growing body of autism research suggests that when professionals work collaboratively with families, outcomes improve not only for children but also for caregivers. Broader pediatric and education studies link family-centered professional behavior - characterized by respect, responsiveness, and collaboration - to greater parent satisfaction, trust, mental health, and intervention effectiveness. However, to improve professional training, we need a clearer understanding of the specific actions and approaches that families find most helpful—or most challenging.

This study seeks to address that gap by gathering detailed feedback from parents about their experiences with professionals. The findings will inform the development of training programs designed to strengthen professional practice and improve family-provider engagement in autism services. 

_{(Makino et al., 2021; Estes et al., 2013; Stahmer et al., 2015; Rogers et al., 2012; Mirenda, 2014; Kuhlthau et al., 2011; Pinho et al., 2023)}

Who are the researchers involved in this study?

Hilary Wood de Wilde, Prof. Edouard Gentaz (Faculté de Psychologie et des Sciences de l'Éducation) and Prof. Marie Schaer (Faculté de Médecine).

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Acknowledgements

A big thank you to all the parents who have helped us develop this questionnaire and to all the families, parent associations and professionals who are helping us to distribute it.  And of course, thank you to all the parents and caregivers that take time to fill the questionnaire out.

We thank our colleagues at Le Centre hospitalier universitaire vaudois (CHUV); Le département de l'instruction publique, de la formation et de la jeunesse (DIP, Genève); Psychiatrische Universitätsklinik Zürich; Universitätsklinik für Kinder- und Jugendpsychiatrie und Psychotherapie UPD Bern; Ospedale Regionale di Bellinzona for their involvement in our study; Centre Hospitalier Saint Jean de Dieu, Lyon.