The “Bell Let’s Talk Day” brought again to the attention of Canadians the crisis and stories of mental health. Almost all of us are affected one way or the other. In each of our circles of relationships, families, neighbourhoods, workplaces, communities, we are touched by the crushing reality of mental illness and the need for services and care.

To Canadians in the autism community, this reality packs a double punch: a diagnosis of ASD (Autism Spectrum Disorder) very frequently is accompanied by a mental health diagnosis thus presenting a complex set of barriers for services and care. In Canada, there are no federal and provincial set standards and best practices for clinicians to follow.

We know that one in 66 Canadians has some form of autism, that ASD is the most common neurodevelopmental disorder diagnosed among children today. Autism is now the fastest growing and most commonly diagnosed neurological disorder in Canada. Autism occurs in all racial, ethnic and socio-economic groups. Autism is a lifelong spectrum disorder. We know that early intervention is critical to a child’s chances of reversing some of the effects of autism. To add to the complexity, co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD. Mental health problems in youth with autism are four to five times greater than in the larger population: 70% will meet criteria for at least one psychiatric disorder and many will meet criteria for multiple conditions.

Addressing such issues as a society requires innovative policy development and multi-sectoral collaboration and partnerships among federal, provincial/territorial players.

When a group of Canadians experience an 80% unemployment rate such as adults with autism, that group deserves to get attention and action. When a group of autistic Canadians experiencing a 50% rate of mental health challenges, that group deserves to get attention and action. When Indigenous communities identify that their participation in ASD related services is blocked by systemic racism and social isolation, autistic Canadians deserve our attention and action.

As a Canadian senator, my journey along the autism policy road began a little over a decade ago with the Senate inquiry, Pay Now Pay Later: Autism Families in Crisis. Stakeholders in the large autism community came together and created the Canadian ASD Alliance (CASDA) to make change happen and to inspire the development of a National ASD Strategy. Since then, government policy has evolved. The federal government has launched a number of initiatives: the Public Health Agency of Canada has established a National ASD Surveillance System and is working with provinces and territories to collect and track prevalent data, compare patterns and began to report on their findings starting in 2018.

Through the Canadian Institutes of Health Research, the federal government invests $8 million annually in areas of ASD research. The Opportunities Fund for Persons with Disabilities has led to the creation of the employment program “Ready, Willing and Able”. These are the building blocks of a National Autism Strategy.

Public awareness of autism has increased exponentially. People are understanding more about autism, neurodiversity and its manifestations. Science and research are demystifying the phenomenon of brain plasticity, also known as neuroplasticity, and its potential to reverse some of the effects of autism.

Researchers and therapists are developing evidence-based approaches and solutions. We are beginning to see the transformational power of combined research and practice so that autistic Canadians can lead integrated and productive lives in a more tolerant society. Great things are happening in isolated places. Great things need to happen everywhere in Canada.

Yet, more must be done. The federal government, the provinces and territories, and their policy thinkers must be on the same page. If you have a lower income, if you live away from urban centres, if you live in the North, or if you live in Indigenous communities, you cannot dream of a promising future. Services and assistance to autistic individuals and their families during early childhood, school age, in later adolescence, as young adults, and as seniors are not there. You are alone. Throughout your life.

Every spring, CASDA hosts a Canadian Autism Leadership Summit and brings together ASD leaders from across Canada to share information and research findings and to advance a national strategy. At the next summit this coming April 2 and 3, mental health will be front and centre. One of the discussion panels will focus on understanding and embracing the complexities of an autism diagnosis: behavioural, biological, social, and mental health dimensions to find pragmatic and solution approaches to intervention and care.

All this work requires extraordinary collaboration and policy innovation.

Note to readers: The Honourable Jim Munson retired from the Senate of Canada in July 2021. Learn more about his work in Parliament.

This article appeared in the February 4, 2019, edition of The Hill Times.