It is not uncommon for people to send me various newspaper articles or You Tube videos with subjects that pertain to autism. Usually, they are meant to be inspirational or share information about a new treatment option. While these bits of information are nice to receive and show great thoughtfulness on the part of the sender, they rarely give me any information that I find to be new or helpful. So, it was with a sweet smile that I read the email that a close friend sent to me. Her mother had seen a segment on Jon Stewart’s Daily Show and she had asked my friend to send along the information to me. Here is the segment that was on The Daily Show.
After watching that clip, I immediately got on Amazon to order the book. I decided to get the audio version so I could listen to it on my walks with Hope. As Mr. Mitchell so eloquently describes in the forward, we autism parents read a lot of books about autism. The problem is that they are all written by non-autistic people. They are third person observations and what we autism parents REALLY want to hear is a first person experience. The closest thing I have found, until now, is the writings from Dr. Temple Grandin. I know that her work has been very meaningful for many people, but her autism is very different from Gray’s autism. Her words might offer a glimpse into the autism experience, but they never really felt like they aligned with the experience in my home.
Naoki, on the other hand, sounds very much like my son. I could weep at the excitement that comes from getting a glimpse into that boy’s mind. I have tried to remember that the account of a 13-year-old boy who lives in Japan will obviously be different from my 7-year-old in Texas, but it is hard to keep myself from closing my eyes and imagining these writings as Gray’s own thoughts.
The book is written largely in question and answer format. Here are 2 of the questions that had a big impact on me:
Do you prefer to be on your own?
I can’t believe that anyone born as a human being really wants to be left all on their own. What we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold shoulder.
Why do you get lost so often?
I’ve already mentioned how I dash off as soon as I spot anything interesting. There’s a different reason for why we get lost so often, however; and I think it’s this: We don’t really know where we ought to be. You could tell us that we ought to follow someone else, or hold their hand. But the fact is that, with or without your suggestion, we are still going to lose our way. Simply put, people with autism never ever, feel at ease wherever we are. Because of this, we wander off, or run away in search of some location where we do feel at ease. While we’re on this search, it doesn’t occur to us to consider how or where we’re going to end up. We get swallowed up by the illusion that, unless we can find a place to belong, we are going to be all alone in the world. Then, eventually, we get lost and have to be escorted back to the place where we were at or the person we were with before. But our uneasy unsettled feeling doesn’t go away. I don’t think we’ll ever be able to reach our Shangri-la, however. I know it exists only in the depths of the forest or at the bottom of the deep blue sea.
While there are parts of the book that are just heartbreaking, these 2 answered questions give me great comfort in the way we have adapted our lives and our family to include Gray and his disability. I know I have said it a million times, but this book just proves that what I suspected was true. Gray was difficult in public because he felt the same way as Naoki describes. With Hope, I believe that Gray finally feels at ease. He no longer feels that urge to run off in search of the place where he belongs. He know he belongs with Hope. Because of Hope, Gray is not left alone. Because of her, Gray can be with us whenever we go ANYWHERE and it is not a disaster. It is a joy. It is joyful because he is with us. And, the gratitude shows on his little face when he looks expectantly out of the car window wherever we go.
If you’re still not sure about whether the book is worth reading or not, watch Part 2 of the interview on The Daily Show.