Susan Senator

The sun just came out, first time in days. It has been a typical cold New England spring. Everything greens up and grows in spite of the raw wet weather, or maybe because of it. But I tend to shrivel up a bit. If I were a flower I would be a deep pink Oriental poppy, that needs full, hot open field sun of late June, and is just a little bit dangerous if used the wrong way (heroin is made from it), and is a bit exotic. Parts of it are ugly and strange, like its spiny, spiky leaves. I would never be a bulb that flourishes in the cold and must stand there shivering in the wan March/April sunshine, nothing but hardened grass or mud around your feet.

An important thought came to me during this very indoorsy, introspective period I’m going through. I was interviewed yesterday by a very bright and empathic young man from the Seattle-Post Intelligencer. We talked a bit about the organization Autism Speaks. I realized, in expressing my thoughts on Nat and autism, that actually there were some commonalities between that large organization and me. We start from the same point, I believe, which is that we love our children and desire to help them. I think it is admirable that Autism Speaks seeks to improve the lives of people with autism and their families. I, too, do everything I can to improve my sons’ skills and their strong points, so that they may lead full adult lives. Nat needs more help than Max and Ben so far, in that he has problems communicating the way most people around him do. Even if he does have his own language, to refer respectfully to Amanda Baggs et al., he still needs to learn our language, the speech of the NT (Neurotypical) world. The NT world holds the power for now and a lot of his success will depend on his ability to connect to and access the NT world. You go to a foreign country, you do better if you speak the language and follow the customs. Sure, you can hope that others will know your language and tolerate what you do, but you can’t depend on that.

Autism Speaks, however, diverges from my interests when they talk about the end goal being to eradicate autism. I do not see that as the end goal. I believe instead that the goal should be bolstering the skills and abilities and supports of people with autism, while at the same time, seeking to shift the view of the rest of the world to a more tolerant, accommodating one. The goal can’t be to wipe out autism because that assumes that autism is an evil thing, a scourge. Many people with autism who express themselves do not feel that they can easily separate their autism from who they are. So how does it feel for them to hear autism described as such? That is what gives me the most pause. What is personality? What is personality with disability? Where is the line? Shouldn’t we all be concerned about how hatred of autism feels to those with autism?

I wish that the people in that organization would consider this. Because I think they mean to do great things, and have the muscle to do so, but they cannot forget an important part of their equation: the autistic people themselves, and how do they feel about autism.

Nor am I saying that I love autism, however. I love Nat. Autism is a part of who Nat is, and I have to figure out how much of that I accept and what parts I try to help him change. Any parent tries to do this with any child, whatever their issues, diagnosed or not. I see how Nat’s wiring hinders him from doing things he would like to do, express himself in a way that we can understand him. (And our wiring hinders us from understanding him better!) But as I have said above, the mainstream world requires certain skills for independence and a full life, and I want that for Nat, so I want to do what I can to give him those skills. NOT, however, at the expense of his self-esteem.

Nat has shown a remarkable ability to adapt to the NT way of life. And I think that this makes him more comfortable, and proud of himself, to have things go smoothly. So I guess he is the more flexible one of the five of us because he has had to learn our ways and we have hardly scratched the surface of his.

Just today he did his entire morning program, completely unprompted. Out of necessity, because his bus was here and we were oblivious to it! We were all eating. Finally he said, “YES! You need your pills!!!” So I jumped up and congratulated him for telling me just like that!!!! And then he said, “Get ready, your bus is here. Bye Daddy!” He did it ALL!!! (Except then he went out the door without his coat. But that could be because my Natty, my tall yellow sonflower, is perpetually hoping for warm sunny weather, too.)