My Neighbor Autism

When I describe the ways I perceive things, or the reasons why I misunderstand non-autistic cues, when I react to painful stimuli or have trouble understanding something "simple", people will often point to my invisible neighbor autism.

They may give that "ohhh...I see" look that tells me they really didn't see, but rather were imagining, my neighbor autism. They may shake their head, get frustrated, or walk out of the room to leave me to my devices because they don't want to deal with someone who is self-injuring. Then later when talking to a friend over a cup of coffee in the lounge they may say, "Do you know who her neighbor is?"

Sometimes, they say, my neighbor moves in, and then in a hushed, whispered voice, say, "She lives with autism, you know."

The fact is that I have no neighbor called autism. But that is not what disheartens me most. It is the fact that people tell me - and not always overtly - that I ought to be ashamed of that neighbor. There are a few things I would like these people to know:

It is not more politically correct (or dare I say - Appropriate?) to address autistic people as "persons with autism". The rationale for this is that in using "person-first" language, you are not defining the person by the fact that they're autistic. It is supposed to be an acknowledgement that - yes, we really are human just like everybody else.

All this sounds very nice and good and all. But it's not that simple.

That and besides, political correctness means nothing if that's the only way you attempt to respect someone. For instance, it doesn't matter if you say "mentally challenged" or whatever is the latest term in preference to retarded; if you treat the same people as a nuisance or an embarrassment then your two cents of political correctness have been wasted.

The fact is, using an adjective descriptor of a person is not itself an insult, a denial of the person's humanity, or somehow supposed to define the entire person. It can be used that way (as in the man who sees a woman upset and says sneeringly, "typical female"), but that's not how it's usually applied. It is usually applied just as a plain descriptor ("I am female", "I am gay", "I am tall", etc.). The fact that the average person would have a much larger reaction to "I am autistic" than to "I am tall" mainly has to do with the fact that most people are not familiar with autistics and the fact that the only knowledge most people have of autistics tends to be skewed to the highly negative perceptions.

It also alarms me that somehow by separating autism from a person that this is supposed to reaffirm the individual's humanity. Perhaps this is part of the ghost of refrigerator mother theories and mythic interpretations of autistics as changelings. Our differing body language, our misunderstanding of non-autistic social cues, and the idea that we are autistic because of cold, un-nurturing mothers, have all been incorporated into the distortion that depicts us as less human.

But the best way to fight this ignorance is to inform people that because we act different doesn't mean we're uncaring or indifferent to people. Not to claim that our imagined neighbor autism really is something to be ashamed of.

The Penny Looks Sad

I don't know how common this is among autistics, but for many inanimate objects, I feel very emotionally connected to. Not as emotionally connected as with other people, but I seem to be able to express it much more clearly for non-human things and objects.

Today I apologized to a window decoration because I tore it. It was out of curiosity, as to how it would look and feel if I tore it, and it was a conscious decision I made to tear it. It made me feel sad, though.

I feel more sadness for people, when other people are hurt (either by me, other people, or other things, such as natural disasters). However, I don't show it in the ways other people seem to do, or expect me to do.

I'm not sure exactly in what ways my external appearance indicates to others that I am not emotionally connected, but I do know that these assessments are usually wrong (the exceptions being when I defended myself against someone attacking me, or if I do not feel sorry for someone who has done something awful and I feel they deserve it.

However, simply not liking someone is rarely grounds for me to feel that they "deserve what they get". I will still feel sorry for that chatty, materialistic girl who entered my class in sixth grade and made fun of me even though I told the boys, who criticized that she wore too much makeup, to give her a chance, when her next boyfriend treats her badly.

Unfortunately, because we express things differently, we are rarely listened to when we say that yes, indeed, we do care.

After only a few short years from when I was diagnosed at age 10, though, I had heard enough of the misconceptions about autism that by age 15 I was parroting back that I was practically emotionless, like a robot. I insisted that I had no empathy, that I was a strictly logical being, and that I had excellent rote memory.

None of these were true.

So I would caution anyone against taking the assumptions found in the medical literature as a factual representation of how all (or most) autistics are. This goes for any autistic person reading just as much as any non-autistic person.

Autistic Self-Advocacy Myths

The following is from a post I made on the Autism Speaks forums. I addressed it to the parents of autistic kids who have only seen neurodiversity and autistic self-advocates as being against helping their kids, to demonstrate the realities of what it means to be against cure, to show that we're not just some highly successful math geniuses who think autism is just a difference rather than both a difference and a disability. Don't think it was very effective, though, considering nobody has replied besides me (only 36 views, too).

I hate to see the polarization between autistic self-advocates who are against cure and the people of autism speaks and cure autism now. Because the truth is that we are all out to help improve the lot of autistics, and it's a shame to see people so easily become divided.

It happens when an aspie writes cocky that they are superior to NTs. It happens when accepting autism becomes dirty words with implication that we are to ignore people's difficulties that are due to disability and pretend that they don't struggle.

These, of course, are the more extreme of the both sides, and they do not represent the true motivations behind the causes - which, as stated already, are for the bright futures of autistics who are all too often left in the dust.

The truth is, accepting autism doesn't mean letting kids bang their heads and pretend that autism is a wonderful, positive thing that everyone should want. It means looking at the various limitations and disability and helping the person to adapt to the world and, where reasonable to adapt the world to autism. Most people I have read on this board seem to already fit this description of loving their kids as they are and wanting to help them get along, except that they also express the desire for a cure.

Autistic anti-cure self-advocates support helping people to talk, or if that doesn't work, to help them to communicate by typing or signing or such. And of course to also try to help with self-help skills (I myself am 17 and can't brush my own hair that is about shoulder-length by myself. I have, however, learned toileting skills and how to wash myself).

So I identify as autistic (Diagnosed Asperger's age 10). However, I am not so reactionary that, just because I am adamantly against cure for autism that I would deem anybody who supports it to be some "conformist NT" or some such nonsense. I want to write on behalf of autistic self-advocates who, like me, reject these extreme views. (The extreme people tend to be far more proliferate (is this a word? I tend to use words that I have no idea what they mean) and so are more noticeable.

I understand that there are many people whose needs for supports and services far outweigh mine. I speak, have the self-help skills I mention, and such things. In fact, I for a long time, while completely against curing Asperger's/HFA, wholly supported curing LFA autistics. It wasn't until this summer that I reevaluated my views and realized that I had been misguided.

Through the Internet, I got to converse with and read from autistic people who are considdered classically low-functioning Kanner's type autism. People who were, variously, mentally retarded, or nonverbal, or lacked in many "basic" self-help skills. Usually fit more than one of these descriptors. And they are against cure, too.

I am only asking that you reevaluate your views of autistic self-advocates and the goal of a cure. I will not try to use scare or sympathy tactics to try to sway you. Of course autism isn't easy. And even though I am what would be called high-functioning, I don't feel any advantages or special gifts that I attribute to autism. My heightened senses, they lead me to sensory overload. It is a foreign concept to me what it is to derive pleasure from this sensitivity.

So I don't feel I have any "autistic gifts" and most certainly not savant abilities. In any case, it is my whole point that people of all opinions and backgrounds and experiences need to tone it down, consider the perspective of the other side, and to look at things a little less narrowly.

After all, some of the deficits of autism (theory of mind, perspective-taking, self-absorption) are also as commonly universal in NTs, except that the deficits are expressed differently and to different degrees (such as, a NT who would pass the Sally-Anne test but doesn't understand why her sister could possibly prefer strawberry over chocolate, or the autistic who fails miserably the Sally-Anne test but considers the differing views and experiences of a cyber-audience - such as me).

I want to add that the last example gives impression that it is meant to categorize NTs as unviersally having the skill of passing the test while not considering other people's different perspectives or autistics as universally being unable to pass the test but being able to see other people's point of view. I was just trying to show how it is dangerous to oversimplify the categories and in doing this did the same. I have known online and in person many NTs and autistics who are the opposite of the example, which was intended to be a randomly selected (apparent) contradiction of the definition of the skills and deficits that NTs and autistics are presumed to have. To show that it is not so cut-and-dried as professionals sometimes make it seem.