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Related Experiment Video

Updated: Aug 26, 2025

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

Published on: July 31, 2017

Parent-Researcher Perspectives on Role Intersectionality Related to Autism Research.

Laura J Hall¹, Natalie A Hoxie¹, Gretchen S Grundon¹

¹Department of Special Education, San Diego State University, San Diego, CA, United States.

Frontiers in Rehabilitation Sciences

|October 3, 2022

Summary

Parent-researchers in autism studies offer unique insights but face challenges balancing professional and parental roles. Their expertise is valuable, yet systemic support and bias mitigation are crucial for effective inclusion in research teams.

Keywords:

autism autoethnography co-researcher parent participation parent-professional parent-researcher

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Last Updated: Aug 26, 2025

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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

Area of Science:

Autism Spectrum Disorder Research
Parent-Professional Intersections
Qualitative Research Methodologies

Background:

Parents of children with autism, especially those with professional expertise, significantly influence current practices.
Limited understanding exists regarding the experiences, benefits, and obstacles of parent-researchers in autism research.

Purpose of the Study:

To explore the experiences of parent-researchers within autism research teams.
To identify the benefits and challenges associated with their intersectional identities.
To provide recommendations for effectively including and supporting parent-researchers.

Main Methods:

Utilized collaborative autoethnographies involving three parent-researchers.
Employed a qualitative approach, with parent-researchers co-authoring all study phases.
Focused on shared perspectives and thematic analysis of their experiences.

Main Results:

Identified key themes: prioritizing children, professional sacrifices, professional training as an asset, potential bias in professional settings, and challenges in maintaining dual roles.
Highlighted the unique assets parent-professionals bring to research.
Documented obstacles faced by individuals with intersectional parent-professional identities.

Conclusions:

Parent-researchers contribute valuable, unique perspectives to autism research.
Addressing potential biases and providing adequate support are essential for successful integration.
Recommendations are provided for autism researchers on employing and supporting parent-researchers.