A lot of my motivation to sit down and put those first few words on a computer screen, words that eventually grew into what is now an Amazon bestseller about my daughter with autism, came from my total frustration with the books that were available on the market. When the words flew out of the doctor’s mouth, the words that changed our entire lives for all time, I raced to the bookstore to find out everything I could. It was appalling.
I found books on theories about autism. I found books about how autism used to be called Refrigerator Mother Syndrome and how the medical community used to believe that I had made her this way by not being affectionate enough. I read that it was caused by vaccines and then no it wasn’t and then well, wait, maybe it was. Equally horrible were the books I read that were so devoid of any joy whatsoever that I couldn’t even keep them in my house, choosing to literally place them in the garbage can instead.
But the worst books were the ones that held out false hope, the ones that tried to convince me that if I only spent enough money, spent enough time, and made autism the sole focus of my entire family’s life, my daughter could be cured. If I did as these authors did and brought in teams of ABA therapists for one-on-one sessions and built additions on to my house to be the therapy rooms, if I quit my job to focus only on Carrie for hours a day, if I sent my other child to live with relatives because she was burdened with being normal, then maybe Carrie could end up healed like these authors’ children.
I live in a town of 35,000 people. We don’t have ABA therapists. We don’t have play therapy groups. We don’t have music therapy, horse therapy, or swim-with-the-dolphins therapy. I don’t actually live in the same town with the bookstore where I bought these useless titles, as my town doesn’t have a bookstore. When my daughter started Early Intervention, she was entitled to one hour A MONTH with a speech therapist, one hour with an occupational therapist, and one hour with a physical therapist. Look at that again. One hour per month each, only 180 minutes in which I tried to glean every scrap of knowledge I could in order to fill in the gaps myself.
The books I could find were written by people who lived in major cities, who were married to university professors or wealthy accountants. I was married to a car salesman, meaning there were weeks at a time in which he didn’t get a paycheck because car salesmen work on commission.
So I wrote my own book. Some people have hated it. Thousands of people have loved it. I think it’s because more people are actually like me, parents who are frightened and floundering and are tired of reading articles and books that give advice on the best kind of therapies out there because there’s not a chance in the world their children will get to take advantage of them. I basically tried to tell people how we did it on our own, without a lot of outside help.
Some of it is common sense, like talk to your child all the time. Some of it has really upset some people, like don’t give in to your child just because he’s autistic. And hopefully, just maybe a tiny bit of it will help parents understand their children just a little bit more.