Beginning the Journey

What, another blog on autism?  Yes, I'm afraid so.  There's so much information to share and learn and few places to do it, even on-line.  So let's get started at the beginning.

My daughter, Alanna, was diagnosed with Autistic Disorder in September of 2009.  Like many parents in Ontario, we had to push pretty hard to get this diagnosis.  We are lucky to have a paediatrician who was familar enough with the M-CHAT to be able to screen Alanna.  But the waiting list to see a developmental paediatrician was nine months.  Nine months.  Just to get a diagnosis.  We knew early intervention was key.  We knew we wouldn't wait nine months to even get out of the gate.  So we bite the bullet and paid big bucks for a private psychological assessment.

Why do this?  Well, in Ontario, you need the diagnosis to get access to services.  For any American friends visiting, you may be surprised to hear that although we have "universal health care" in Canada, the insurance "companies" (being the ten provinces) play the same game to reduce costs - de-listing services.  Autism treatment is not covered by medicare.  So you need to instead go through a different ministry than Health.  Of course, every province is different (more on this in a later post) in how they treat autism.

In Ontario, the treatment you may receive is called Intensive Behavioural Intervention (IBI), which is a fancy way of saying Applied Behavioural Analysis (ABA) delivered in an intensive (20 hours or more a week) way.  So we needed this diagnosis be eligible for this service.  Currently, we are waiting to hear if Alanna is eligible for the service.  You may be wondering why she may not be eligible.  The answer is simple:  she has to be "autistic enough", and the psychologists at our regional autism centre (Thames Valley) need two months to decide.  I should mention that after we spent a buttload of money on our own psychologist, they happily spent a buttload of taxpayer money re-running the same tests to confirm her diagnosis, as it apparently possible we might make this up.

We hope to hear in January, 2010.  But that's just the beginning.  That's just the part where you get to hear if you are eligible.  Then you have to wait.  It could be a long time.  It could be three years of waiting for service.  Alanna could be school age before she gets "early" intervention.

Like many other parents, we aren't waiting.  We're paying for the ABA therapy ourselves.  It costs $30,000 a year.  It ain't cheap.  It's not without sacrifices on our part.  But it's her best shot for a normal life.  I'm her daddy.  I can't live with myself knowing I didn't do everything I can for my little girl.  What kind of daddy would I be if I didn't?