..or maybe I should say I’m starting to realize how little I understood….
I’ve been reading The Only Boy in the World this week, and it has really made me think about my past actions and feel some serious regret.
Michael Blastland’s memoir of his autistic son, Joe, has truly struck me. I have several friends with children who have an autistic spectrum disorder, much like Joe, and as I read Michael’s words about all of the unhelpful (and hurtful) things that his friends and fellow parents said to him, I feel ashamed. I have said many of the same things. I was only trying to be helpful. This paragraph hit me hard
“Bless him!” say those who’ve mostly not experienced his stamina. “Chidlren. They do pester, don’t they?” Friends remark that all children like routine, all children like what they know, all are obsessive at times. Such commonplaces offer reassurance: “Don’t panic, mine do it too. Joe isn’t unusual and anyway, how bad can it be? One shouldn’t fret about a little repetitive behavior in children.”
I’m grateful for the intended consolation but, truly, they have no idea. For there’s the obsession of normal children and there’s Joe… He knows his priorities. Think drug-crazed, fanatical, murderous desperation, think lawless smack habit; think this without exaggeration; think it seriously. There’s a phrase used of Olympic champions and artists devoted to their craft: single-minded. Imagine this with absurd literality: a mind with one objective only, a single thought driving out all others, the thought of an obsessive lover, a glutton on a fast, a drowning man.
I have often said that my kids are obsessive too, my kids get a little OCD, my kids love routine too… I was trying to help, but I now realize that I was not helping.
As Mr. Blastland goes on to talk about Joe’s life and the way his brain (and other autistic brains) function, it is really fascinating. He talks about how adults and children relate to autistic kids, and the phenomenon that seems to follow where humans shy away from crazy, loud people (think of a drunk in a public place), and yet kids and adults are often threatened if someone is quiet and won’t move out of the way, or doesn’t understand personal space. Those quiet social differences are somehow much more upsetting to strangers.
He also talks about the lack of imaginative play in autistic children. He tells stories from now grown men and women with Aspergers, and how they explain that they didn’t realize that other people reasoned and felt the same way as they did. Somehow their mind didn’t make that connection, and even as adults they must focus and concentrate to remember this fact.
I really recommend this book to anyone, even if you don’t know any autistic children or adults. If nothing else, it will give you an appreciation for all of the things that your mind does without you even realizing it. You make millions of decisions based on how other people think, feel, and will perceive you. You trust what you’ve been told about dangers and possibilities. You are able to use fictional stories and imaginative mind play to think through different scenarios. The brain really is amazing, and this book has made me appreciate it even more.
To all of my friends with autistic children, I am very sorry. I only meant to help, but I now realize that I said all of the wrong things. Please forgive me.
All we and our children want are a few open minds.
I have a nephew with autism who is 6.5 and non-verbal. I wanted to share two things. First I commend you for having read a book on the topic when your children don’t even have autism (at least that is what I gleaned from your post). The fact that you were curious and wanted to learn more and spent time and energy reading a book on it means a lot. Secondly, I myself read two books on the topic as I was frustrated that my brother was giving me snips and not really articuating things well for me. I was worried for my nephew. Well first it is not my brother’s job to completely educate me, but anyway, the books were enlightening to me. I cried and I was frustrated when I read them. I wish I could fix my nephew. Anyway the one book was by Temple Grandin called “Thinking in Pictures” and I was just amazed by what I read. You should read that one.
Oh and there is a fantastic documentary about autism scripted by an autistic woman who is non-verbal (basically) but communicates by typing into a machine. She tells of what it was like for her at a very young age and before she was 13 which was when that device was introduced into her life, and she was taught to read and write with it, and she was able to communicate. I can’t remember the title right now, I did review that documentary on my blog (you can do a search if you want on my blog). I had borrowed that from my public library.
Nice to read your blog and thanks for commenting on my blog.