Thank you, Madam Chair. I welcome the opportunity to speak today before your subcommittee.
I am the grandmother of two young boys, Alex and Nathan, ages six and three. Both have been diagnosed with autism spectrum order, ASD. They are brothers.
My husband and I were privileged to be able to pay for private therapy for Alex while he waited the 10 months for the publicly funded assessment and diagnosis. As I learned the importance of early identification and intervention, I wanted to do something that could help all children, not just those children whose families could pay.
That led to the founding of QuickStart-Early Intervention for Autism in 2008. QuickStart is a non-profit Canadian charity.
QuickStart's goal is to find the most effective way to get immediate help to the children who are showing signs of autism. To this end, QuickStart has helped to establish the first Canadian pre-diagnosis clinic.
QuickStart also advocates for children with autism and their families. That is why I have asked to appear in front of your subcommittee today; first, to underline the health and economic burdens to the family; second, to emphasize the importance of early identification and intervention; and third, to highlight the encouraging results of an intensive early therapy for toddlers.
First is health and the economic burden. Our own personal family experience is that it is an enormous stress, on not only the family but the extended family. We have watched our daughter and son-in-law fight every step of the way for their children. We have seen the schedules they keep, with the numerous appointments, therapies, etc. It never ends. They are exhausted. My daughter has had to stop work, so there is the loss of her income.
On top of that, we have to come up with the funding for private therapy, which is easily $50,000-plus. We're talking after-tax dollars, and it's often the extended family who helps with this. Personally, I have cashed in all of my RRSPs to pay for my grandsons' therapies, and my husband and I are cashing in our other retirement investments so that our grandsons will have the best opportunity to develop.
I also hear from other parents. They call me. They're desperate. They are re-mortgaging. They are selling their homes. They're moving to other provinces to get better care.
One grandmother called me to tell me she continues to work, so she can pay for her grandson's therapy.
I'm here to tell you that we're the lucky ones. What if you don't have a home or investments to sell, or an extended family willing to help? Your child waits while you can do nothing, and valuable time is lost.
Second is the importance of early identification and early intervention, knowing what to do. I have a perfect example with my two grandsons.
Alexander was not identified right away. His GP wanted to take a wait and see approach, which is very common. We didn't know where else to take him to get help. Once he was flagged at 20 months of age, Alex waited a further 10 months for the assessment and diagnosis. Alex did not come to the top of the intensive behavioural intervention therapy, the publicly funded therapy here in Ontario, until he was 54 months of age. That's 34 months, almost three years from when he was first identified.
Nathan, his brother, is a different story. He took part and is still in a siblings research study with Dr. Lonnie Zweigenbaum in Toronto. At 15 months there were concerns raised. At 18 months he was showing some red flags for autism. He was diagnosed at 21 months.
Here I feel there is something that is very critical as well. Alex had regressed significantly by the time he started private therapy. Nathan started to receive private treatment as soon as he began to regress because we knew what to do with Nathan.
Alexander currently attends grade 1 with the help of a full-time aid. While Alex has many strengths, we are not sure at this time if he will be able to live independently.
Nathan, after 21 months of intensive therapy, has improved so much—and that's private intensive therapy—that he no longer qualifies for the IBI therapy. We are optimistic that he will live a full and independent life.
The third thing I'd like to talk about is an intensive therapy for toddlers. I would like to briefly highlight the encouraging results of an innovative new early intervention therapy for toddlers that's based on behaviour analysis, called the Early Start Denver model. This intensive early intervention approach by specialists and with the child's parents is suited to children under two and a half years of age. It has shown significant improvements in outcomes and cost effectiveness. Nathan's rapid progress has confirmed these results.
I believe his progress is due to a combination of these key factors: early identification and intervention, weekly speech therapy, and his intensive therapy with the Early Start Denver model. We're very fortunate to have someone trained in that here in Ottawa--the only person in Canada.
Madam Chair, I thank you for this opportunity to appear today. I thank your colleagues for bringing their attention and hope to this matter.