The Government of Canada must include autistic groups front and centre as it develops a truly inclusive autism strategy.
Autistics for Autistics is a Canadian autistic led-and-run self-advocacy group. We’ve consulted governments provincially about autism policy, engage in community education and outreach projects, and host meetups and events for autistics, families & friends through our chapters in Ontario and New Brunswick. We are an international affiliate of the Autistic Self Advocacy Organization (ASAN), a provincial member of the Autistic Advocacy Coalition of Canada, and part of the broader disability rights movement internationally. Nothing about us without us!
What are autistic groups asking for?
We’re glad you asked. Here are 5 areas that self-advocacy groups like A4A focus on.
1. Communication Access
30% of autistic people are non-verbal or semi-verbal. This means that like some other disabled people, we need access to augmentative and alternative communication platforms (called AAC).
The average time it takes for an autistic child to receive essential communication access is 2.5 years. That is 2.5 years too long! Government funding programs must begin to adequately fund the services and technologies that allow non-verbal autistic children to communicate–and their caregivers to properly communicate with them.
Please note: AAC is not a part of ABA and it needs to be funded independently of ABA.
2. Inclusive Education
Segregation is the number one problem facing our community; it has a devastating impact on our health and potential. Segregation begins when children as young as 2 or 3 are sent to IBI centres instead of being integrated into their communities. They are then streamed into special education at school and graduate into segregated lives, in housing, employment and social life.
This pattern of segregation has to end. We need to reform our preschool community options and apply accessible design in Canada’s public schools. There are many successful models of inclusion (some right here in Canada) that policymakers can learn from. We are happy to share them.
3. Employment and Support
Poverty and unemployment are a major crisis for autistic people in Canada. Our government should include autistic adults as a category in its next Census and study our rates of employment and income, because these have never been studied. (Too often, governments have relied on weak data by autism service providers.)
Flexibility is key for our employment. Right now our governments can review their disability funding programs to ensure that autistic Canadians can work part-time, or move between unemployment and employment, without being penalized.
4. Desegregated Housing
Our federal government continues to mainly support segregated housing for autistic and intellectually disabled adults, rather than funding independent supported living. This is completely unacceptable.
Funding for segregated housing should be re-routed towards projects that promote autonomy and community integration (e.g., through groups like LiveWorkPlay). The government is welcome to contact us to discuss best practices and resources on independent supported living!
5. Access to Health Care
Like everyone else, autistic people need health care. Unfortunately, communication barriers and sensory differences limit our access to health care. This can affect our ability to seek care and the quality of the care that we receive, especially in the ER.
We advocate for a national education program for health care professionals to train them on AAC and communicating with autistic patients, as well as simple steps to make hospitals, clinics and the dentist more accessible for autistic people.
What needs to change in federal autism policy?
As end-users of services, autistic people are the major stakeholders in all autism policy. We must be consulted nationally. Our government also must consult with inclusion experts and other disability organizations within and outside of Canada to understand new models that value inclusion.
The Government of Canada needs to question the wisdom of its current system where agents for “autism service” providers have determined the course of federal policy. These agents do not consult with autistic people and their services are based on a segregation model that is not in our community’s best interests (Please see our full report).
We are asking the Government to listen to autistic people about our experiences, perspectives and ideas; to study best practices for access, inclusion and human rights; and to craft policy that is informed by the real experts, globally, who are making inclusion and access happen.
We have experience in advising on policy provincially, with white papers that apply provincially and federally. We have studied best practices and are ready to share our resources as key stakeholders. It is our hope that the newly-formed Government will include autistic groups front and centre as it develops truly inclusive autism policy.