Barriers

I'm not sure how my heart can be at once so full of hope and sheer admiration for my boy and so full of wariness and dread at the same time. While I love that he has the ability to type out sentences that say:

People look at me and they see my autistic self and they don’t believe I can have intelligence. I know I will have to work hard to show them that I can learn like everyone else.

It makes me incredibly sad both that he knows that people don't believe that he is capable of intelligence and that he will have to prove himself. I love that he has the drive to type these things out through great effort but also that he has the determination to do just what he says. How terrible that he should have to have yet another, needless, hurdle placed in front of him because people have such deeply entrenched ideas about what it means to be autistic. People who cannot speak and who are significantly challenged by autism cannot also be highly intelligent. And if they are, they'd better be willing to prove it by pretending that they really aren't all that autistic and don't really need any special supports.

Oliver has made wonderful strides with communication in a very short period of time. He is frequently able to type without any physical support and he is now reading aloud much of what he is typing. But typing independently comes at a cost for Oliver. It exhausts him.

Early on when we were still using pen and paper, Oliver told me several times that he couldn't write without my touch because he couldn't feel where his hands were. He couldn't locate parts of his body in space. Understanding that put some of his other difficulties in perspective: for example, why Oliver had so much trouble learning to put on his pants. No matter how many times I tried to break that task down for him into manageable parts, he always had great difficulty. Now I see how difficult it would be to put on your pants when your foot is dangling somewhere in space but you can't make sense of where! Also, when I first tried to teach Oliver to ride a bike it took seven months before he could even move a pedal!

When we were in Syracuse I learned how to help Oliver work around this part of his disability by providing backward resistance to his arm as he types. By giving Oliver some physical input he could more easily locate it in space and the act of moving toward a target became much more deliberate because he was more in control. Gradually, he needed less and less physical input but it still requires a tremendous amount of focus and concentration. He cannot tell where his finger is so he must visually track the tip of his finger at all times. Most of us will first locate the key we want and then automatically move our finger to it. Quite a neat trick if you can manage.

To see what this is like for Oliver, try typing with one finger while never taking your gaze from its tip. If you don't go cross-eyed and give up at the end of a sentence I congratulate you!

When I describe my role as Oliver's support person, I always begin by explaining his difficulty with body awareness and how that is a significant factor to his ability to communicate. My job is to support him in several ways. I remind Oliver to focus on his finger. I remind him to hold a firm point -- if his point gets droopy it is difficult to see the typing finger. I encourage him to slow down if he is repeatedly missing the mark. If he is getting too tired or anxious I will rest my hand on his back or shoulder for a few minutes so he has one less thing to process. But most importantly, I offer him emotional support and encouragement. I am profoundly grateful that he is willing to do this very hard work and share his thinking with me and he knows it!

Having said all of this, I cannot begin to describe how disappointed it makes me when people believe that it is in any way logical or necessary for Oliver to be able to communicate without a support person doing all of the things I describe. It is as if the kind of support that Oliver needs is not valid because other people have a hard time understanding or accepting that locating one's body in space can be a significant barrier to communication. I'm seen as coddling or not able to "let go" because I refuse to leave Oliver's side while he is typing. (As if I would betray his trust to accommodate any one else's ideas about my son's performance!)  It has been gently explained to me that eventually he has to be able to manage on his own. And I ask: "Why?"

Why must Oliver be able to overcome a significant part of his disability and manage on his own? Most other people are not expected to out grow or overcome their disability. Why shouldn't Oliver expect the generous support of others and the belief that he is already doing the best that he can do at this time. Who is setting the agenda that requires Oliver to end up at some predetermined place where he can magically, or perhaps through sheer will, learn how to control his own body as though he were not disabled?

Somehow Oliver must both prove his intellect and demonstrate that his disability is no barrier to being able to express his intellect.

Quite a neat trick he is being asked to manage.