Migrating care: Reimagining autism support through caregiver justice

By Bolu Olaniru | OMC 2026

Two mothers help a young boy piece together a puzzle in a Toronto living room. Image courtesy of Rooted in Care.

Rooted in Care was born from my own journey as a mother and a caregiver of an autistic child. Caring for an autistic child was not only about attending appointments, therapies, or school meetings: it involved constant advocacy, the endless paperwork, the uncertainties, and wanting to do everything for my child.

Although I had a supportive family, there were still times when I wished I had a community of people who truly understood what I was experiencing, people with whom I could share the fear, exhaustion, guilt, hope, and uncertainty surrounding applications. To me, it was terrifying to imagine caregivers out there on their own without any support. This erected the foundation of Rooted in Care: they deserved belonging, a community where they could share their experiences, care for their own mental wellbeing, and recognize that they were not alone in their journey.

Through my work as a researcher, educator, and founder of Rooted in Care, I have had the privilege to work alongside immigrant and refugee families navigating Canadian autism support systems. Their stories tell much more than my own: how migrated families navigate unfamiliar healthcare, education and the labour market, and how they rebuild social networks and imagine a future for their children.

Care beyond institutions: How migrant caregivers create their own communities of support

When formal systems fall short, caregivers rarely wait for someone else to solve the problem. They create solutions themselves.

Caregivers exchange information about funding applications after workshops. Because, for them, official information is difficult to understand, they would often introduce newly arrived families to trusted therapists, explain school accommodation processes, recommend culturally responsive professionals, and share resources that took them months to discover on their own.

Informal WhatsApp groups become lifelines where caregivers ask questions, recommend services, and reassure one another long before professional support becomes available. These networks are essential: they reduce feelings of isolation and build confidence. They are digital spaces where caregivers feel understood by people who have lived similar experiences.

Caregivers become experts not because they plan to, but because they have no choice. They learn to navigate funding systems, advocate within schools, coordinate appointments, interpret policies, and connect services that rarely communicate with one another. (See: Autism Alliance of Canada and the Canadian Institute for Health Information.)

Yet despite their expertise, they are rarely invited in policy discourses. Their lived experience represents an invaluable form of knowledge, but, too often, they remain excluded from policymaking processes.

The invisible work of caregiving

Many families with caregiving responsibilities describe spending countless hours coordinating appointments, completing funding applications, advocating within schools, researching services, translating documents for extended family members, and supporting their children's emotional wellbeing. (See research from Statistics Canada and the Canadian Centre for Caregiving Excellence)

One caregiver once described feeling less like a parent and more like a project manager. Another described it as a full-time responsibility having to figure out which services were appropriate and how to access them. These stories reveal that caring for autistic children also involves supporting the people who care for them.

Caregivers still need more access to culturally responsive resources, opportunities to connect with other families, and spaces where they feel seen and supported. It is undeniable that their well-being is inextricably related to their children’s. 

Belonging as care

Healing often begins with belonging.

At Rooted in Care, I have watched caregivers arrive feeling isolated, overwhelmed, and uncertain. Over time, they leave the community knowing they are not alone. Sometimes, the most meaningful moment during a gathering is hearing another parent quietly say, "I understand. I've been there too".

That simple exchange creates something that formal services alone cannot provide.

Community.

Too often, cultural stigma, public misunderstanding, and shame encourage caregivers to suffer in silence alone. Many feel pressured to put on a façade of a strong and resilient parent, as they quietly carry emotional burdens. Caregiving should not be an isolated experience but one that could be shared.

Reimagining autism support

If we want autism support systems to become more equitable, we must begin by listening. Rather than viewing migrant caregivers primarily through the lens of need or vulnerability, we should recognize the strengths, leadership, and expertise they already bring to their families and communities.

Meaningful support extends beyond clinical services to social ties, cultural understanding, peer support, mental wellbeing, and opportunities for belonging. Reimagining autism support also means creating services that are culturally responsive, linguistically accessible, and developed in collaboration with families. It means recognising caregivers not simply as recipients of services but as collaborators whose lived experiences strengthen research, policy, and practice.

In order to create more equitable futures for autistic children, we must also care for the wellbeing of those who care for them. When caregivers thrive, families are stronger, and autistic children are better able to thrive.

Dr. Bolu Olaniru 

Bolu is a Canadian educator, researcher, and founder of Rooted in Care, a social enterprise dedicated to supporting caregivers of autistic individuals through culturally responsive mental health and wellness initiatives. Her work focuses on caregiver wellbeing, disability inclusion, community engagement, and equity for immigrant, refugee, and diverse families navigating autism support systems.

Website:www.rootedincare.ca; Email: rootedincareca@gmail.com | bolu_adewale@hotmail.com ; LinkedIn ; Instagram/Facebook: @rootedincare_ca