SENATORS’ STATEMENTS — World Autism Awareness Day
April 2, 2019
Honourable senators, I’m also privileged to stand and recognize today as World Autism Awareness Day. April 2 is a day that is very important to the autism community and is certainly important to me.
I can’t imagine that 12 years ago at our Standing Senate Committee on Social Affairs, Science and Technology we released the report Pay Now or Pay Later: Autism Families in Crisis. And here we are where access and services for autism are still uneven across this country. Can you imagine, honourable senators, that there are half a million autistic Canadians? Later has arrived. The latest changes to autism services by the Ontario government are just the most recent adversity facing families in this country on the autism front. Program modifications, funding cuts, changes in the education system, government and new budgets all cause anxiety and disruption to families of children with ASD. They pay the price for this.
Governments have put programs together. There has been Ready, Willing and Able by this government right now. We’ve had the Harper government do a number of things, as Senator Housakos said. We’ve had tax credits, disability tax credits and so on. But it’s certainly not enough because families are still suffering.
This is not who we are as a nation. Why are we struggling to define policies and provide services in an equitable way to all Canadians with ASD? Why can’t we guarantee for most people with ASD a future lived to their true potential: because our leaders don’t know how to listen, because our leaders are not curious enough, because our leaders don’t look at what others are doing, because our leaders don’t know what robust consultation looks like, because our leaders are working in silos, because our leaders are uncomfortable in working together in a nonpartisan way.
This is an unacceptable approach by our policy-makers. Large, sweeping changes hurt families and persons with autism. The story in Ontario is not just Ontario’s story; it’s a story across the country of trying to deal with this issue. I congratulate the Ford government for putting enhancements in and announcing today that they will have consultations, but that should have happened a long time ago before announcing anything.
Provinces and territories need clear direction. They need a blueprint and they need a collaborative and leadership approach with any federal government — this federal government. Sit down, think outside the box. I’m tired of standing up here each and every day talking about families who are moving to get best services, families breaking up and mortgaging their homes to get the extra services. There’s a blueprint out by the Canadian Autism Spectrum Disorders Alliance. We’re going to talk about it this evening in a room upstairs. I hope you can all join us to have that conversation, because the time is now. We really need to have this blueprint. Sorry if I lost my voice, but I’m passionate about this, and I’ll get it back, but I will never lose my voice for the families dealing with autism. Thank you very much.
Honourable senators, I rise as well today to recognize World Autism Awareness Day. As we know, autism spectrum disorder is a severe lifelong condition that dramatically impacts the lives of those diagnosed. It also creates emotional and financial stress on their families, caregivers and communities.
Every individual with autism spectrum disorder is unique and presents a variety of complex symptoms. As the name suggests, it is a spectrum disorder, which means that symptoms are present to varying degrees and therefore require individualized assessment to determine the appropriate support services.
Responding to autism needs is not a political or partisan issue.
What I wish to say, as a father of a son with autism, who has sought services when we lived abroad, who has struggled with various governments in this province of Ontario to receive services, is that it is not easy. It puts immense strain on families.
The current initiatives taken by the Government of Ontario highlight the need to consult with those directly impacted, with regional service providers and advocacy organizations to improve governmental programs that are based on individual need.
Affecting 1 out of 66 Canadian youth, ASD is currently the most common neurodevelopmental disorder with which children and youth in Canada are diagnosed. This does not take into account all those affected indirectly by ASD such as family members, community service providers, teachers and schools, to name a few.
The need for a national strategy to improve the lives of persons diagnosed with autism has clearly been established in Canada. Children dealing with ASD deserve to have the same rights and opportunities as any other child and more so as they become adults, as our son has become.
I applaud the advocacy undertaken by Senators Munson, Bernard, Housakos and others.
Senator Munson, you were great on the radio this morning. That’s probably where you first lost your voice.
Honourable senators, it is the duty of parliamentarians to advocate for the rights of all Canadians. The Senate in particular is meant to advocate for minority voices. It is more critical now than ever to affirm our support for the autism community in Canada and around the world. Thank you.
