Susan Senator

Here are questions I have, without many answers. Or, if I have the answers, I don’t feel ready to say them yet. When I was in grad school, I learned that just by asking a question, you reveal something about yourself. A question can be a statement.

I do not mean these questions to be statements, or objective in any way. They are just things I wonder about and have come across in all the interviews I have just finished doing for my book.

Do you think that the autism spectrum is too large? Do you feel that there are too many people being said to have autism? How do you feel about the terms “high functioning” and “low functioning?” If we hate the terms, do we also secretly hope that our kids are “HF?” Do many people refer to their kids as “LF?” Why would they?

Answers: Autism Spectrum: Some feel the spectrum is too large. Some people do not understand the many manifestations of autism. Some people would like to see different names, like maybe there is a gut disorder that has some autistic-like symptoms but when certain dietary changes are made, the gut issues go away along with the symptoms, but then these folks feel their child was “cured.”

Using LF: They would not rather use it. But if a parent is told their kid is “high functioning,” most likely they’ll use that designation, because there is a positive connotation. So if your child is LF, you are forced to come up with a different way of viewing him. That is a good thing, because LF is neurelitist. If you don’t know what these terms are, see me after class.

Have you ever thought about how all the terms used to describe autism spectrum set up a caste system ranging from lowest-functioning, “in their own world,” “severe,” to “high functioning,” “practically normal,” and stuff like that? How can a parent or a kid possibly feel good knowing that they are at the “bottom?” [not rhetorically asked]

Answer: They must come up with a new paradigm that describes themselves, and not listen to the pejorative labels.

How do you feel about the many people who are newly pregnant, who say to you: “I hope there is nothing wrong with my baby?” or “I hope he doesn’t have Down Syndrome.” I said it myself. But what that does is to set us up for an agonizing sense of failure and misery if we do get a child like that.

Answer: I felt shitty when people said to me that they essentially hoped their child was not like mine. Like I was supposed to understand and remain somewhere down here, alone with my misery. But we’re talking about my darling Nat, who has brought so much to this world. Nat Nat Nat!!!

Do you think it’s possible that there are more autistic people, i.e., the Spectrum actually IS bigger, because of evolution? Is there an evolutionary purpose, perhaps, to autism? [This topic, and the answer below, is something I came across in William Stillman’s writings.]

Answer: There may be an evolutionary change in our psyches brought about by autism. Think about how others are forced to understand difference, and take care of people in ways they never thought they would. Society will have to become more and more sensitized to difference, just as we have become more cognizant of civil rights. As more readily-communicative autistics move into mainstream society, there will be more and more access to different kinds of minds and ways of being, and — tough shit for the neurotypical, we will just have to figure out how to get along.

Is there some way that we as a society can overcome some of the negative language and attitudes? Is it possible, or is it actually the truth, that disability is undesirable? If disability is not undesirable, than should it be called something else? But isn’t that kind of PC, rather than getting at the true issue, which is seeing disability as a negative?

Answer: I don’t believe that changing the name of disability is the answer; I think that it may start with that (just like getting people to consider the harm of the word “retard”). But I do think that people, especially doctors and all others who are the first to diagnose, should be trained in how to tell the parents the truth without negative baggage.

Where do we draw our lines? Of course we don’t want our children to have issues that will give them pain or cause them to suffer. Issues that require surgery, let’s say, or shorten lifespan. Or is it more “desirable” to have a brain-typical child who doesn’t live beyond 10, than a long-lived child who struggles lifelong with developmental disability?

Answer: I don’t know.

But then we get into the nebulous areas. Is it okay to have a child whose academic capacities are “average?” Do any parents accept that, or do the blame the school system, or the I.Q. tests?

Answer: I blame the I.Q. tests for being too stupid to measure Nat’s true intelligence. I blame stupid society for seeing him as a drain, a burden, a huge cost, a mistake, a monster, brain-damaged. Who are they to judge him? Who doesn’t have something wrong with them, on the inside, on the outside? Be honest.

Let he who is without sin cast the first stone.