# A PhotoVoice Study with Canadian Immigrant and Racialized Family Caregivers of Children on the Autism Spectrum

## TL;DR

This study highlights the challenges faced by immigrant and racialized caregivers of children with autism in Canada and emphasizes the need for inclusive and culturally responsive support systems.

## Contribution

The study centers on underrepresented immigrant and racialized caregivers, using a participatory PhotoVoice approach to reveal structural barriers and advocate for equity-oriented autism policies.

## Key findings

- Seven themes emerged, including stigma, transitions, and the emotional burden on caregivers.
- Participants experienced exclusionary schooling and systemic barriers but also expressed resilience and collective strength.
- The PhotoVoice process was validating and empowering, with participants ready to disseminate findings.

## Abstract

Public health relevance: How does this work relate to a public health issue?
Given the lifelong nature of autism and the complexity of needed care, a public health approach is needed that centers on the families living with autism.Yet, perspectives of caregiving families are overlooked, especially those from marginalized communities.

Given the lifelong nature of autism and the complexity of needed care, a public health approach is needed that centers on the families living with autism.

Yet, perspectives of caregiving families are overlooked, especially those from marginalized communities.

Public health significance: Why is this work of significance to public health?
Unmet needs of family caregivers lead to stress, burnout, and mental health strain, which have population-level effects on family health and service consumption.This study fills a key evidence gap by centering on immigrant and racialized caregivers’ voices, a group that remains underrepresented in autism and caregiving research despite facing disproportionate structural disadvantage.

Unmet needs of family caregivers lead to stress, burnout, and mental health strain, which have population-level effects on family health and service consumption.

This study fills a key evidence gap by centering on immigrant and racialized caregivers’ voices, a group that remains underrepresented in autism and caregiving research despite facing disproportionate structural disadvantage.

Public health implications: What are the key implications or messages for practitioners, policy makers, and/or researchers in public health?
By documenting family caregivers’ lived experiences using a participatory PhotoVoice approach, this study highlights how social determinants of health, including racism, language barriers, immigration status, and service fragmentation, directly affect access to autism care and family health.The findings show the need for culturally responsive, coordinated health and education systems that support family caregivers across transitions, reduce administrative burden, and address stigma and exclusion within schools and autism-related services.

By documenting family caregivers’ lived experiences using a participatory PhotoVoice approach, this study highlights how social determinants of health, including racism, language barriers, immigration status, and service fragmentation, directly affect access to autism care and family health.

The findings show the need for culturally responsive, coordinated health and education systems that support family caregivers across transitions, reduce administrative burden, and address stigma and exclusion within schools and autism-related services.

Background: Immigrant and racialized families raising children on the autism spectrum in Canada navigate intersecting inequities shaped by racism, language barriers, immigration status, and fragmented health and education systems. Yet their perspectives remain underrepresented in autism and health policy research. Methods: Guided by the socioecological and critical social science lens, this community-based participatory study employed a PhotoVoice approach in partnership with SMILE Canada–Support Services. Ten immigrant and/or racialized family caregivers from the Greater Toronto area participated in four in-person sessions involving ethical training, guided photo-taking, group-based reflections, and collaborative theme refinement. The data included 38 participant-generated photographs, narratives, and an audio-recorded final group discussion. Results: Seven interrelated themes were identified: (1) family support and child needs; (2) physical and emotional burden on caregivers; (3) school support or its missingness; (4) stigma and discrimination; (5) overall journey with barriers; (6) transitions and uncertainty; and (7) two sides of a coin: isolation and strength, loneliness and hope. Caregivers highlighted extensive invisible labor, exclusionary schooling, financial and systemic barriers, and cumulative stress. Simultaneously, they articulated resilience, mutual support, and a strong sense of collective responsibility. The PhotoVoice process itself was experienced as validating, unifying, and empowering, with participants expressing readiness to disseminate findings through exhibitions, school boards, universities, and policy-engagement initiatives. Conclusions: Caregiving among immigrant and racialized families is both a profound act of love and a site of structural injustice. Centering on caregivers as co-researchers and knowledge holders reveals urgent needs for equity-oriented autism policies and culturally responsive, accessible support systems in Canada.