I am reading I am intelligent by Peyton Goddard and Dianne Goddard with Carol Cujec. I am not finished yet. It is a powerful, beautifully written tale of triumph about Peyton who was denigrated, undermined, diagnosed as “mentally retarded” believed to be incompetent then learned to communicate through a facilitator as a young adult and proved everyone wrong. Peyton’s story is shocking, heartbreaking and revelatory. Her mother writes with a poetic beauty about her own evolution as she worked to help her daughter, refusing the labels being applied and yet allowing that they seep into our thinking unbidden despite our rejections of them. I have been unable to think of little else.
As I read Peyton’s and her mother’s words I finally understood why so many object to the labels of “high,” “low,” “moderate” when describing an Autistic person. This is a concept I thought I understood, I certainly understood it intellectually, but I didn’t feel I completely understood until I was about half way through this terrific book. I have felt uneasy when people have rejected the delineations for autism. A little voice in my head whispered those clichéd words, yes but if their child weren’t so high functioning they wouldn’t be so quick to dismiss these terms. I admit to having felt uncomfortable and even upset when I read accounts of other parent’s struggles with their brilliant, verbose, hyperlexic children. What I would give to have a child who could speak and think circles around me, I thought with envy.
Mostly I’ve remained silent, understanding that my thinking was limiting but unable to work out exactly why. I felt the pull of other parents whose children are non-verbal, some violent in their frustration to be understood and unable to communicate. When those parents used the word “severe” it was a short-hand I thought I understood. Yet, I read a blog of a parent who described her two children as being “severe” and then felt confusion when I read her posts because the children described were academically and verbally much more advanced than my own “moderately” Autistic child. But I said nothing and tried to move on, understanding that I didn’t understand.
Finally I sent such a post to a close autistic friend whom I trust and knew would not judge me harshly. I ranted and admitted how I felt. She was patient with me. She gave me the space to be confused, though it must have been difficult to stay calm in the face of my non-understanding. Particularly as she is one who could be labeled “high” functioning and yet her teeth cause her pain when she is lied to, she suffers migraines and becomes overwhelmed, yet feels she has to pretend that she’s fine. She carries the weight of not wanting to burden those who love her, because she “should” be able to deal with the things that she cannot.
As I read about how Peyton started to communicate by typing and how people began to see how intelligent she was, a little light went off in my brain and I got it. Because (and this is probably obvious to many of you already, but I’m a slow learner you see) Peyton was labeled all sorts of things by people throughout her childhood, but those rating systems did nothing but hurt her. Not one of them actually helped her, they didn’t support her, they were used to further segregate her and they were used by some to abuse her horribly. As I was reading, I thought, right because Emma is considered “moderately” autistic, but she’s not moderately intelligent. Her intelligence is extremely high, so what does moderate really mean. Is that how she “seems” to neurotypicals? But how is that helping her? It doesn’t help her. In fact, by thinking of Emma as moderate or severe or mild she is being limited. If someone who is thought of as “high” functioning then can’t cope in a crowded place with fluorescent lighting and begins shouting and flailing about, the common thought is, well he could control himself, but is choosing not to. Just as a “severely” Autistic person is an inspiration and miracle when they are able to express themselves and communicate their thoughts to those who had slapped a low IQ on their charts. These ratings become the method by which a human being is seen as non-human or less human.
In my enthusiasm I wrote to my friend, Ib last night.
Me: I think I finally understand what you and others have meant about characterizing autism in terms of mild, severe etc I suddenly had a brain flash and I think I understand why.
Ib: Oh thank heavens 😀
Ib reminded me that the scaling system is ineffective as a descriptive device as children grow, progress and become adults where they continue to grow, evolve and progress. I thought of Peyton finally finding a way to communicate in her early twenties.
Ib said, “You wouldn’t grade me now as you would grade teenager me the level doesn’t stay we grow, like anyone else. I remember things that is why I can suggest to you what Emma may mean with levels-thinking, you may never have seen me as a resource because “Ib is not like my Em” but you see that I am.”
Ib is right. She is my friend, first and foremost, but she is also someone I rely on to help me understand. Because there is so much that I don’t. But with help I can.
I would love to hear from anyone who cares to chime in here. If I’ve been disrespectful, please let me know. I think I’m getting it, finally, but I want to hear from all of you. I need to understand this. For my daughter’s sake, I have to understand and she can’t explain it to me… yet.