I have put off writing this post, but it is time. Holly at Fearless Females, one of the blogs I read on a daily basis, wrote about this subject, and it encouraged me to write a post about when (and how) I told Nigel about his autism. On that day, Nigel had experienced something that I’ve referred to as a “lucid moment” or a “moment of clarity” (which Holly also recently wrote about). It was a rare moment when he might ask me a question, or I’d ask him a question and he’d answer me, not in the rote tone of autism, but in his own sweet voice, with complete comprehension and perfect enunciation. The words he used were his own, not echolalic, not a phrase he had memorized from a video that would fit within the context of the situation. And during these fleeting moments of clarity, I could see in his eyes that it was really him, not the autism, the usual vacant quality, that was communicating. At least, that’s what it felt like to me.
On the day in question, I had received a call at work (up until I began homeschooling him a year ago, not a day went by that I didn’t fear receiving the dreaded calls that my son’s behavior was too disruptive, and I needed to leave work to come and pick him up). I’m not sure what he did that day. It was a blur of many days, many issues. Once a boy who had somehow antagonized him came up to him, and Nigel grabbed him by the shoulders and swung him around and threw him on the ground. Another time he threw a pinecone in a friendly girl’s face, because someone else had riled him up. He had chased kids with sticks in his hand. He had knocked desks over and screamed in class. He had refused to do class work, complaining, “I’m too hard,” back when he was still learning pronouns.
So I picked him up from school, and his full-time education assistant explained to me what had happened that day. Nigel, age eight, stood with us for a moment, then walked off a little ways until we had finished talking. He hates being talked about, always has, and he’s never been oblivious to it. And he knew that other kids’ parents didn’t talk to any teachers about what kind of day they had, every day. But that day, he was able to verbalize it.
I will never, ever forget the feeling in my body as we walked to the car, side by side, and he looked up at me and said, so lucidly, “What’s wrong with me, Mom?” Those words gripped me, set off a knot in my stomach, chilled me, stunned me (since most of his speech at that point was still echolalic or with incorrect syntax). I knew the day would come, because Nigel had always been social, and he was developing verbal skills. I knew one day he would wonder, and he would ask. I was not prepared for it that day, in the middle of second grade. So soon, so harsh. I stopped for a second and put my arm around him. “We’ll talk about it when we get home, honey,” was what I said.
I berated myself later, wondering, Why, when he asked me what was wrong with him, didn’t I say, ‘There’s nothing wrong with you, honey’ ? To this day, I wish I had said that instead. But his words had caught me off guard, and I wasn’t prepared.
How do you explain autism to your eight-year-old autistic son? I don’t even remember how I began. I’m sure I tried to keep it as simple as possible. I think I started off by saying, “Some people have a disability in their eyes and they can’t see. And some people have a disability in their legs and can’t walk. A disability is something that makes it hard for people to do things. There is a brain disability called autism. Autism makes it hard to learn to talk, and it makes your ears sensitive so they hurt when you hear air dryers in public bathrooms or leaf blowers outside or the vacuum cleaner.” I wasn’t sure if he comprehended what I said, or if he was even listening. He didn’t appear to be. I continued by telling him that his teachers and family will help him with understanding autism, and there are some good things about his autism too, like learning to read early and knowing how to read maps. I told him it’s okay to have autism. He seemed fidgety at this point, and so I told him he could go watch a video. I hugged him, and after he left, I cried.
But not for long. I’ve always acknowledged my emotions concerning having an autistic child, but I’ve also come to realize that vigilance and advocacy are two things that I need to focus on, and they take up a lot of time and energy. So I let myself cry when I need to, but my mind soon jumps to begin composing an email to the Special Education Consultant (advocacy) about whatever issue caused me to cry, and then a split second later I’m dashing out of the room (vigilance) to find out why Nigel’s yelling or what just crashed.
So that day that I told my young son, with a huge lump in my throat, about autism, I did cry for a minute. Then I got up, went to my computer, and wrote “Nigel’s Autism Book.” I wrote it in the first person, starting with, “My name is Nigel. I like to run, read, laugh and play like other kids. But there is something different about me. I have autism.” The rest of the book talked about how autism affects him. Things like, “Sometimes I don’t know what to say and I say something from a video. I like to watch videos. But other people do not know words from my videos. First I will tell them what video I am talking about when I say something from a video.” I ended with “Other people have autism too – other kids and adults. Someday I can meet them.”
Unfortunately I didn’t finish the book until after he had gone to bed, so we didn’t have the opportunity to read it. The next day was traumatic for him. He was beside himself, physically and verbally acting out with anxiety and mentioning autism to all the teachers (I guess he was listening when I had talked to him). And, of course, I got a call at work that I had to come and pick him up. We came home and I read him the book I had written for him, and we read it with Aidan, who was six at the time. Nigel spent the rest of the day carrying his book around and later stated that he wanted to bring it to school the next day. He had such a relieved look on his face that I reprimanded myself for not preparing the book before telling him that he had autism. Of course! He needed something visual in order to gain some understanding of this bomb I had dropped in his lap. Now he had an explanation. Something he could show to other people because he couldn’t explain it in his own words. He took it to school and showed his teachers and the kids in his class. And some of those kids still care, still look out for him, six years later.
I consider “Nigel’s Autism Book” to be the most important thing I’ve ever written. If I publish nothing as long as I live, I have helped my son with my writing, and that is worth so much. Nigel still keeps the book on his bookshelf, and every now and then I see him reading it, as if to remind himself how far he’s come.