World Autism Awareness Day
If you hear some special sounds in our gallery today, those are all my friends and your friends, and the sounds you may hear are the sounds of love and affection from an autistic young man. His name is Philippe Manning. It’s important to keep that in mind as we think of the world of autism — what goes on, what parents have to work with, love, and why we have to pay attention to this.
This is World Autism Awareness Day, an opportunity for us to learn about and reflect on the lives of people with autism spectrum disorders. For over a decade, I have done what I can do to share the stories of these folks — these front-line workers, these advocates, these families, these loving people.
For example, there’s a birthday invitation, or a job offer. These are experiences most of us remember fondly and associate with growing up. Many children, adolescents and adults with autism miss out on these opportunities. The reasons are never exclusively their ASD symptoms.
Instead of friends and community, the context of their lives and the lives of their families is often isolation. Instead of optimism and enthusiasm about school and future independence, there is frustration and worry. Parents of autistic children often carry the full weight of the responsibility, and they’re right to feel alone, because at the end of the day, they are. They are also right to worry about what will happen to their children when they can no longer care for them.
I have heard so many heart-wrenching stories, and I have listened to their stories. This is about human rights. These are the origins of many wonderful programs in Canada’s autism community.
Six years ago, right here in Ottawa, my friend Suzanne Jacobson, a grandmother, established an organization called QuickStart. Suzanne has two grandsons with autism. Her first, Alex, was diagnosed with autism at about two and a half years old, but it wasn’t until he was four and a half that he finally began behaviour therapy. Knowing that early intervention is key but having to wait so long for it was harrowing for Suzanne and her family and her husband, Jake.
To spare other families the same agony, she helped create a clinic offering preliminary screening to determine each child’s needs. It offers one-on-one consultation and group support sessions. The Kiwanis Club is involved in raising money for KickStart and QuickStart.
It is difficult to see Suzanne as anything less than directed and confident, but there was a time when she was very much at the mercy of an inadequate support system. It couldn’t have been anything but love and family devotion that fueled her determination to learn about autism and seek out what her grandsons needed most. It had to have been compassion that inspired her to act in the interests of other families like hers.
We all have to begin somewhere. Everyone involved in Canada’s autism community has a story much like mine, getting involved because it feels right, being led by their sense of responsibility to others. Many of them today possess a wealth of knowledge and insight about autism, its symptoms and treatments, and the services and resources offered at the grassroots, provincial and national levels — the extremely complicated and confounding networks that parents and other family members are up against in seeking help for their loved ones.
One of the greatest lessons I take from the stories of the people in my advocacy work is that we just have to try; right? It has been an emotional day, in particular in our Senate caucus this morning as we listened to the stories. We have a destination. We’re on the road, but it is a long road and we have to get there.
As long as we listen to and take stock of the most pressing needs of those who want to help, we will end up in the right place. For those of you who wonder what your role in this could be, I encourage you to treat World Autism Awareness Day as your opportunity to find out. Locally and throughout the country, there are wonderful people and organizations you can reach out to for information and better understanding. The simplest action might well be the beginning of a life-enriching experience.