The federal budget 2021 pledged $15.4 million over two years to the Public Health Agency of Canada to support the creation of a national autism strategy. Responsible spending of public money goes hand-in-hand with realizing human rights. It follows that there is an opportunity to ensure the equitable inclusion of autistic Canadians. As a result, the money earmarked to support the creation of a national strategy will be spent meaningfully. As a first step, the creation of governance structures to oversee and hold the government accountable for the strategy would do just that.

Canada does not have an independent governance structure to guide federal activities relating to autism and developmental disabilities. This lack of leadership has had serious consequences. Take the example of the ongoing pandemic. Few autistic people, if any, were consulted about the additional challenges they faced throughout COVID, despite their increased risk of contracting the virus. Many autistics have chronic and co-occurring health conditions, live in congregated settings and face significant barriers to health care. All are serious risks for adverse outcomes during the pandemic. Still, to our knowledge, the federal government did not reach out to this community or offer any additional support.

What’s more, the need for autistics to be on a priority list for a vaccination was brought to national media attention only in February 2021 (nearly a year after the pandemic hit Canada), in a news brief by the Canadian Autism Spectrum Disorder Alliance (CASDA), a national advocacy group.

This lack of consultation is worrisome. If the autistic community and the autism community (the caregivers and professionals who are not autistic but work to support autistic people) are not engaged in critical policy decisions during a global pandemic, how can they trust that the implementation of a national autism strategy will be effective? To ensure the trust of those most affected by such a strategy, the autism community needs to oversee the establishment of the strategy’s governance structure. Although a consultation process is underway, the time is now to translate recommendations into meaningful policy actions.

The federal government can increase confidence in the current consultation process by implementing a leadership structure that ensures effective monitoring and accountability during the design and implementation of a national strategy. Importantly, the blueprint (2019), roadmap (2020) and policy compendium (2020) developed by CASDA have been vetted by a wide cross-section of the autistic and autism communities in Canada, and provide valuable guidance for moving forward with a national strategy.

An advisory committee is needed

Implementing an autism advisory committee to help guide the development of a national autism strategy would be beneficial. Canada can develop an implementation plan modelled after Accessibility Standards Canada, an advisory structure for persons with disabilities that was created under the Accessible Canada Act. As outlined by CASDA, an advisory committee for a national autism strategy can serve as an expert body, with a board of directors whose majority identifies as autistic. The board of the advisory structure would be responsible for setting the committee’s strategic direction, managing the activities and affairs in accordance with its mandate, and ultimately creating standards for the strategy. This would allow people with lived experience to be front and centre when it comes to communications and creating regulations, ultimately leading to better results for autistic people living in Canada.

What can we learn from others?

Governance structures to help co-ordinate autism services, supports and research have been established in the United States, England, Australia and Northern Ireland.

For example, the Interagency Autism Coordinating Committee (IACC) a federal autism advisory committee in the United States, is tasked with co-ordinating autism research and services across government agencies and advising on autism issues. Due to COVID however, the IACC has not convened since July 2019. Its absence has left advocates and agencies without a platform to communicate their priorities and needs to the U.S. federal government, highlighting the essential role of a governing structure.

Australia similarly established a Select Committee on Autism to focus on services, support and life outcomes, and to develop productive and meaningful ways to improve the lives of autistic people. It also has a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Established in 2019, it operates independent of the government to better protect and promote the inclusion of people with disabilities.

In 2013, Northern Ireland developed an initial, cross-departmental autism strategy, including several reporting structures for its implementation. The Northern Ireland Civil Service (NICS) autism stakeholder group was also developed to assist with the preparation of autism priorities alongside the strategy. Recognizing the significant role of this group, it was reformed and further expanded in 2019 to help with the development of a fully co-produced autism strategy.

Long-term oversight and leadership essential

A leadership framework for a national autism strategy should include an independent, cross-governmental co-ordinating body for long-term oversight and monitoring. This co-ordinating body could evolve from the work of the advisory committee for a national strategy and ideally draw on the strengths of international models, including the oversight functions of the IACC and the Australian select committee, as well as the independence of the royal commission, and consultation features of the NICS autism stakeholder group. This would create an ideal structure for responsive and flexible autism policy development by providing advice on legislation, federal activities and the issues and challenges faced by autistic individuals and their families living in Canada.

Time is ticking

In the short term, an advisory committee to support the implementation of a national autism strategy would ensure the development of a strategy that best supports autistic people living in Canada. In the long term, this advisory structure can evolve into an independent, cross-governmental co-ordinating body to guide a continued national focus on emerging issues for autistic individuals and their families. The federal budget and pandemic have highlighted the need to engage with the autistic and autism communities living in Canada. There is no better time than right now to start.

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Kaela Scott
Kaela Scott (PhD) is a project co-ordinator at the Canadian Autism Spectrum Disorders Alliance.
Jacalyn Guy
Jacalyn Guy (PhD) is a Kids Brain Health Network-Canadian Autism Spectrum Disorder Alliance policy fellow, and formerly a MITACS-KBHN fellow. She works as a postdoctoral research associate at the Medical Research Council’s Cognition and Brain Sciences Unit, University of Cambridge, U.K.
Jonathan Lai
Jonathan Lai (MSc, PhD) is the executive director at the Canadian Autism Spectrum Disorders Alliance. He holds an adjunct faculty position in health services research at the Institute of Health Policy, Management and Evaluation in the Dalla Lana School of Public Health at the University of Toronto.

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