Research explores experience of Pacific caregivers raising ASD children

University of Auckland doctoral candidate Marvin Schuster is the middle child of his parent's three sons. Both of his brothers have Autism Spectrum Disorder (ASD).

His research explores the experiences of stigma and acceptance among Pasifika caregivers with autistic children. Marvin (Tauese, Malie, and Alamagoto/Sāmoa) grew up in Papatoetoe, South Auckland and says the decision to focus specifically on ASD stemmed from his lived-experience.

The former Papatoetoe High School student began his undergraduate studies in 2020 at the University and is now in the second year of the Doctor of Clinical Psychology programme.

"This research is very personal to me, given my own family's experiences, especially having two brothers with ASD - and a lot of other relevant diagnosis that go with that.”

Marvin says when discussions come up around what is considered normal, his upbringing informs what that looks like.

“That is about as close to feeling normal as you can get,” he says referring to family life and what that has entailed not only for his brothers, but his parents as well.

“For my parents having two out of three sons, both at home - who will both be living at home for presumably the rest of their lives is a lot.

“ASD understandably is a topic that means a lot to me, and I recognise the impact it has had on my parents in particular.”

He recalls his mother’s experience of reaching out to a health service provider, once it was becoming clear that his younger teenage brother was showing signs of also having ASD.

"She rang up one of the services, the person on the other end of the phone said ‘oh you’ve got another one’ and she hung up after that and never went back. That was very challenging for her.”

He says more recently, looking back at his childhood, he now has a greater appreciation for his parents, raising three sons, and two with ASD.

“The older I get, the more I understand how difficult that experience would’ve been, and my mother is someone who has had a lot of support from the whānau, and especially my father, in a lot of cases that’s just not the norm." 

He says his household have made many sacrifices, in order to support one another, with his education a priority, and also ensuring his brothers are always well cared for.

He realises that broaching the subject of stigma with research participants will require some sensitivity, and creating an environment that allows caregivers to safely share their experiences, will be important.

“Naturally it will be a difficult point of discussion for most people, so we are committed to providing a safe space. 

“I’m also aware that people bring lots of experiences and we are mindful that the negatives are not necessarily representative of the total Pasifika experience.” 

There are great hopes for the research, Marvin says obtaining more accurate information about the experiences of Pacific-ASD caregiving is an opportunity for the community to safely share their voices. 

Improving connectivity between Pacific communities and academic research could expand the knowledge base of Pacific research, and open wider dialogue about ASD for the Pacific community through a Pacific lens. 

Marvin is inviting Pacific caregivers to have confidential talanoa (discussions) about their experiences of caring for children with ASD, as part of his research.

“I want to provide a safe space for Pasifika caregivers to share their stories and, in doing so, contribute to a better understanding and support system for our community. It's about acknowledging both the challenges and the strengths, within our experiences."

Talanoa will take place in the home of research participants and Marvin is happy to have discussions beforehand to ensure interested parties are well informed about the research.

Take part in the research

A koha will be offered to Pacific caregivers interested in participating in the research, contact Marvin Schuster here to learn more about taking part in the project.