Let me get right to the point. I’ve never spent an instant thinking about curing Maddie. I believe diseases need curing, and I don’t think what Maddie has is a disease. It’s just a way to describe the way her brain works. In some ways she is not programmed to easily conform to society as we know it. In other ways, she has some huge advantages. I don’t think of her as disabled. She is just Maddie. She has some challenges most of us don’t have, just as she has some special gifts.
If you have been following my blog, you know that our experience with Maddie was kind of a slow burn. There wasn’t a particular turning point or set of “symptoms” that suddenly appeared. Her diagnosis at age nine was simply a way to describe and better understand what we had observed about Maddie over the years. It was a relief for us all.
But it took about two years for us to have the guts to tell Maddie. I was so afraid that knowing she had Asperger’s would detrimentally affect her self-image. Would she think there was something wrong with her? How would she take that news? Fortunately, she had been seeing a psychologist for over a year (this is the doctor who gave us the diagnosis). They had formed an excellent relationship, and Dr. E offered to help us deliver the news. My husband and I took Maddie to see Dr. E, who showed an age-appropriate short film about Asperger’s and then explained how that applied to Maddie. The movie was so great: It explained how people’s brains worked differently, and when a person’s brain works this particular way, it’s called Asperger’s. There was no stigma attached; it was just a way to describe somebody.
Maddie took the news well. So well, in fact, that she announced on our way home that the next day she would be informing her teachers. I couldn’t believe it. Not only was she not upset, she seemed kind of relieved! Finally, a way to understand herself better and a way to explain herself to others.
There have been some troubling times throughout Maddie’s childhood, many of which I can directly attribute to Asperger’s. There was a time when Maddie had such difficulty understanding and expressing her feelings, when she got upset, she expressed her anger or frustration physically by lashing out. But my (and my husband’s) thinking has always been this: She may have some challenges, but it simply will require some extra work to help her through them. We’ve never thought for a moment that somehow taking the Asperger’s out of her was necessary, possible, or even a good idea.
One of her main challenges it her processing speed, which relates to output. She is quick to understand and learn, but when it comes to, say, writing something down, the process is painfully slow at times. Most of the time when I’m trying to get her attention, I have to say her name at least three times before she responds. Maybe five. Maybe she still doesn’t respond. It’s so frustrating to get to five with no response. Sometimes I give up. But it’s not that she’s purposely ignoring me. It’s more like her brain has received the message but is just taking its time to process what that message is before she can respond. Our world doesn’t accommodate the delay very well. Everything is fast, everything is now, everything is hurry up. Is it wrong to be slow in that way? No, not really. But we are not set up for that. So, you might ask, where does the problem actually lie? Is it in Maddie or our society? Who’s to say?
I’ve met people over the years who spend inordinate amounts of time and money seeking out a wide variety of therapies to cure their children. There are different types of body movements, diets, detoxes, and who knows what. Some of them sound OK. Some sound really strange. I don’t know if they “work” because I don’t even know what that would mean. How do you cure a person of an entire part of their personality? I don’t know.
What has been shown to be effective with autistic children is early intervention, meaning help in a variety of ways as early as two years old. Preschool ages. Kids will work with occupational therapists to learn to regulate themselves and become more self aware, in addition to building core strength, fine motor skills, and a better mind-body connection. There are social groups to help kids learn by rote what they are unable to pick up by observation. Speech therapy to help with language, actual speech, and social skills. Those approaches are great because they merely teach a kid skills and build confidence to function in the world that surrounds them.
I can imagine that parents who seek out a cure have kids with much more severe challenges than Maddie has. In most ways, Maddie is more than able to navigate the world. She’s resourceful and fearless and clever and friendly. She’s articulate and funny, too. Her Asperger’s may very well be why she’s not self-conscious, completely nonjudgmental, immune to peer pressure, and completely removed from the drama so often attributed to teenage girls. What a gift!
Maybe, though, if I had a child who was nonverbal, or self-harming, or who suffered from paralyzing social anxiety, I would think differently. Maybe I would see Maddie and her autism as two separate things. But Maddie is my child, and I have no thoughts of making her a different person. I don’t always understand her, but that’s okay.
I hope to help Maddie have a fun, happy life. I hope to help give her the skills required to do that (as do all parents). I want her to be appreciated for who she is. I hope people learn to have empathy for her when they don’t fully understand her. I hope she is understood. I hope she continues to love herself.
Today she loved both of us enough to get up on time and have a relatively relaxing morning. “I don’t know what motivated me,” she said after I thanked her. I’ll never know. But that’s okay. I take it one day at a time, I love every part of her. I think that’s probably enough.
The Year of Living Hopefully 