Thursday, December 31, 2009

Jenny McCarthy and You

"Why yes, I have heard of Jenny McCarthy.  No, I'm afraid she won't help me, but thanks for bringing her name up."
This is a very typical conversation between myself and some well-meaning person who has just learned Alanna has autism.  It is unfortunate that due to our celebrity worshipping culture the only thing anyone knows about autism is Jenny McCarthy's name.

Jenny McCarthy is a Playboy model who has found instant fame basking in the glow of Oprah's pseudo-science.  She advocates what is commonly referred to as the biomedical approach to treating autism.  In my opinion, most of these treatments are money-making schemes designed to feed off the wealth of parents with autistic children who are desperate for a cure.  It's the same kind of stuff that one might use to "cure" one's cancer - with vitamins and "de-toxification" techniques.  It's also bunk.  Anecdotal stories of a child being "cured" of autism by taking vitamins is not a scientifically controlled study.  Show me the proof it works.  That's where it falls down; no one can show me any proof of the wild claims Jenny McCarthy makes.

Some of you may be thinking, "Just because it's not scientifically proven doesn't mean it doesn't work."  Well, true enough.  Many parents think the gluten-free casein-free (GFCF) diet helps their kids (or in some cases, just GF or CF).  Do I think this diet can relieve digestion issues making children less prone to bad behaviour?  Sure I do.  What about the claim that "opiate" like substances escape into the brain via a "leaky gut"?  Well, maybe.  Research is being right where I live into this very hypothesis.  But lots of parents have tried GFCF with no impact.  So it works for some children to help them, but it doesn't cure autism.  And it doesn't work for most children.   Will we try with Alanna?  I think maybe someday soon, but we're not rushing into it.

Bottom line - if you are the parent of a newly diagnosed autistic child, or suspect your child has autism and they have a lot of digestive issues (chronic constipation, diarrhea, odd stools), you probably can't lose trying GFCF.  But please, don't use biomedical treatments as your first-line defense.  Use something that has been researched for which you can measure progress.  Get a good Applied Behavioural Analysis program going first before venturing too far into Jenny's world.

Sorry Jenny, I'm glad your son is cured.  But I have only so many dollars and I have to use what's proven to be the most effective.

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?