No Map To This Country

Bruce, a frequent contributor to my other blog, told me one of his blogger friends had written a book about autism and asked me if I'd like a copy - of course I said yes.  Over the years I've had occasion to work on autism issues here in Ontario and was eager to read this personal account of what it's like to learn a child is autistic and how a family faces their new life post diagnosis. In my first career I worked on programming in children's mental health facilities and later, as a political assistant, became engaged with autism families. The MPP I worked for spoke out strongly about intensive behavioural intervention (IBI) delays and advocated for its inclusion under our public health insurance system so that treatment wouldn't be a lottery for kids who needed it. I wish I could say the funding issues have been resolved but a decade later the struggle continues. Earlier this month  an Ontario MPP was ejected from the legislature when she refused to stop railing at the government over cuts to IBI therapy. Plus ça change...

Jennifer Noonan's book No Map To This Country tells of her family's journey through autism, often referred to as a rising epidemic which now affects as many as 1 in 68 children in the US. The title was inspired by Emily Perl Kingsley's poem:

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

When Noonan's 2-1/2 year old son Paul was diagnosed with autism she made it her mission to  understand and fix it. She leaves no stone unturned, seeking out professionals who have experience with autism and scouring the internet for guidance and information from parents of children with the same diagnosis. Sometimes the place she lands resembles Beirut, not Holland. She  determines that Paul's behaviours abate on a gluten and dairy free diet and she finds ways around his food allergies and meat aversion to provide him with the nutrition he needs. She negotiates the minefields of insurance coverage, medical and education systems and just when it seems her challenges could not be more daunting her younger child, Marie, is found to be on the autism spectrum as well. Now there were two diets and therapy schedules to juggle but Noonan has a will of steel when it comes to her kids. Despite making remarkable progress they go through periods where they regress and their diets or meds or treatments have to be tweaked until a solution is found that will get them back on track. Would the same regime work for every autistic kid? Probably not. But Noonan's dedication and hard work have achieved impressive results.
This book is written with skill and with humour and I found it fascinating. Hopefully in a few years there will be another book updating us on the progress of Paul and Marie.

Read an excerpt from No Map To This Country