Achieving Equity in Autism Support

“Equity in health implies that ideally, everyone should have a fair opportunity to attain their full health potential and that no one should be disadvantaged from achieving this potential.” (World Health Organization)

Recently, SAAAC’s Director of Operations, Dr. Shivajan Sivapalan, spoke at the Canadian Autism Leadership Summit on issues of equity and access in addressing needs of vulnerable and marginalized communities.

Dr. Sivapalan has spent much of his professional life looking to increase equity and access in the autism community. His most recent projects have worked to increase access to diagnosis and intervention support for newcomer communities and the creation of a mental health program for caregivers.

Below were some of his thoughts on the journey to achieve equity and access in Canada for individuals on the autism spectrum, and their families.

What are the main challenges you see (if talking about current services) or envision (if talking about a future National Autism Strategy) to achieving equity in your communities?

Only recently has there been acknowledgement of the challenges that the South Asian community and more generally newcomer and immigrant families face in achieving equity in the autism community.

One of the reasons is the lack of outreach, leading to assumptions made about a community’s service needs and the barriers they face. In addition, communities themselves are not aware of this inequity due to the lack of outreach. To them, longer wait times for access is the norm.

When it comes to autism related services, research has clearly shown that the immigrant/newcomers receive a later diagnosis. Factors such as poverty and cultural perceptions of complex needs are just a few that play a role in this. However, there are initiatives that are being designed to address some of these, one of them being SAAAC’s Mobile Developmental Outreach clinic.

On a more macro level, there is a lack of representation amongst those advocating for services. Although the National Autism Strategy is a good foundation to build off of, a more targeted approach is needed with the needs of newcomer and immigrant families kept in mind.

What are the main barriers to achieving equity for your communities?

There are not a lot of resources available to these communities. And, those that exist are not culturally sensitive, contain difficult language or are primarily in English. This is also reflected in the absence of culturally responsive education and programming for people within these communities. Many families can sometimes feel isolated and will not seek help when needed.

This was one of the major drivers in our creation of our SAAAC CARES program, which was a response to the lack of a culturally responsive caregiver support program.

Socioeconomic variables also play a role. Currently in Toronto, there are limited services in underserved areas. Families typically have to travel a distance for assessments and interventions. This can add to the financial burden that some of these families already face and is a common complaint for our families at SAAAC.

Another barrier is not having the voices of those affected heard. We do not see consultations and collaborations with the “end user” of these services.

How could these barriers and challenges be overcome in a future National Autism Strategy?

I think it starts with outreach. We need to work hand in hand with these communities to better understand what they need and what their biggest challenges are. Following that, there are a few steps that can be taken to address them such as the following:

  • making space for representation on panels, key discussion groups and strategic planning committees to ensure that their voices are heard
  • ensuring that these committees are involved in the process of reviewing relevant strategic planning initiatives.
  • working with community organizations and cultural liaisons to help with improving cultural competency and ensure that strategies that are being developed and implemented are culturally responsive
  • dedicating resources to create materials in different languages and are culturally competent so that the communities are aware of potential changes that may be occurring
  • decentralizing of some services
  • promoting community-based research for black, indigenous and people of colour.

Also, being from the healthcare sector, it would be great to see physicians, residents and healthcare professionals have the opportunity to work in culturally diverse and underserved communities during their training.

How can the broader autism community be effective and respectful allies in supporting equity for your communities?

I think it starts with the broader autism community as a whole educating themselves and improving their own cultural knowledge and awareness. This is essential if we all want to improve our own cultural competency. This will also help with understanding our own inherent biases. Another strategy is to for community leaders to work directly with service agencies to ensure that their practices are reflective of the communities they serve. This can help ensure that service providers have a welcoming and inviting environment. This direct collaboration between the community leaders and service providers will also ensure that staff and volunteers at these agencies are representative of the clients they service. This is something that we prioritize at SAAAC and find it very useful in overcoming certain barriers.

There also needs to be a focus on developing strategies that foster collaborations between communities so that there is better understanding cross-culturally. There are some shared experiences between communities and having collaborations may help with developing long-term strategies and solutions rather than stop-gap solutions.

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