25 July 2011

This is Not My World and I Really Don't Want It to Become So

[No one should let me do anything intended to be humourously informative.  I am atrociously bad at it.]

My name is Jason Nemrow and this is not my place.

Where I am standing right now is a place where I don't feel like I fit. Frankly, there are only a handful of places that I feel relatively good in and those good feelings happen because there aren't a lot of people around. I feel better in the wilderness. I feel better in open grasslands with nobody in sight. My mother calls it being "asocial", which is to say that some people don't seem to need other people as much as expected. Not that you aren't the most wonderful people in the universe, but I can live quite happily not enjoying the pleasure of your company.

There is another word for this "out-of-place" asocial feeling, sort of. I don't want to offend autistic people, but this is one of the diagnostic criteria for the autism disorder. One of my sons was diagnosed with autism in 1995 and a few others of my children have been described as having behaviors allied with autism, like ADHD and anxiety, so I have a bit of knowledge of these things, if only from the experience of living with such people. I have often been accused, and have accused myself, of having a mild form of autism. So, for over ten years, I and my children have been people who officially don't fit in with society. This autistic-ish "don't fit in" concept is the reason for my post today and for my own interesting exploration which today I share.

Learning the Ropes

I really didn't have good access to the World-Wide-Web until 2004, when a contract I was working on put a permanent connection to the Internet into my home. My knowledge of autism from those "pre-Web" days was from reading books written by people with lots of letters after their names - books I could find in the nearest mass-media bookstore. Most of these highlighted the "disorder"-liness of the autistic "condition" and gave strategies and interventions for "fitting in better" with the larger society. Many also described the work that was being done to prevent autism or find some "cure" for it. It is the idea of "experts working on the problem" that seems to be highlighted in the popular literature and be really important, especially to parents of autistic kids in the first few years after their child's diagnosis. As time passed, I found that the focus and aim of these books were diverging from my experience with autism and how I chose to deal with it, or rather I was diverging from the established books! Once I began typing the world "autism" into search engines on the Web, I discovered a whole new world of autistic adults that had a whole different perspective on their "condition" than the ones presented in mass-media. I also found that, after about ten years of the "official" position, that I was thinking along the same lines as these "webified" autistics. I will take a risk here and reveal why I think this shift of view happened to me and perhaps to many other autistics.

The Attitude Toward Autism in the "Literature"

The books I read early on talked about the closed-off "fantasy world" "shell" that the autistic child seems to live in. Many people see this "shell" as something the autism condition creates, trapping a happy, normal, and typical child inside that screams to get out. In my experience, the "shell" is a defense mechanism created by the autistic child to protect them from a reality that is incomprehensible and curiously hostile to them. The kindly experts and the parents they influence provide a specific goal in this regard: force the child out of their "shell", kicking and screaming if you have to, and make them "fit in" the real world appropriately. The term appropriate is very, very important in the lives of those who work with autistics (it is the most significant word in the official diagnostic descriptions of the autism spectrum disorders) and the search for appropriateness can become the obsession (the second most significant word in the descriptions) of an eager-to-please autistic like me, pressured day-after-day by a very demanding and unrelenting dominant culture. One can never know what is actually happening in each autistic brain, but I can report my own experience with this pressure.

Spreading My Own Flavor of "The Way Things Have to Be"

I have spent my life being very dishonest to myself and everyone around me and I will continue to be dishonest because that is what I must do to be permitted to live in this vaguely-bigoted society that I was born into. I have personally created millions of masks and worked over my lifetime to know which mask was "appropriate" in which circumstance. Sometimes I do a good job looking like a typical person. Other times, my store of masks cannot cope with a situation and I get angry at my inability to appear appropriate. The only time I can let my masks down is when I know I am completely alone, which this society doesn't tolerate very often at all. The point in "keeping up appearances" is to help other people feel comfortable so they will treat me nicely, and I am typically well-rewarded for the times I do a good job. A few times I have tried to be myself just to my wife, but it nearly destroyed our marriage. I hope she is honored (she tells me that she is and I have to trust to her word) that I have a special set of masks that I only use when I am with her. I hope the rest of you understand the personal sacrifice I and other autistics make every second of our lives so that you fine people don't need to be too embarrassed by our presence in your world. As a father, I will demand that my autistic children develop the dishonesty I have just laboriously described because the society around me forces me to do so for my "own good" (or society's smugly demanding convenience). It may sound sickening to some, but it must be done in the name of appropriateness, which seems sadly to be what passes for the highest societal virtue.

Speaking for a Person You Can't Understand

Besides the mention of social problems in reference with diagnosis, not much is said in the mass-media about the feeling of an autistic "not fitting in". Books are typically written by experts and parents who deal with non- or semi-verbal children and reflect the fact that what the autistic person is actually feeling is often unknown. The only things experts and parents can know of these children is their own outside observation, colored by their own outlook on things. Many of these children cannot answer such esoteric questions of "feeling" or their answers are colored by an inability to "appropriately" communicate such a thing. Often, it is just supposed by experts and parents that autistics would prefer to be normal (what constitutes "normal"?) and all efforts are steered in that direction. I had no idea how other autistic people felt about their experiences until I met articulate autistic adults on the Internet. Many of these autistics would reject a proposed "cure" and merely seek a rather socially-cost-free acceptance of how and who they are. These autistics can actually tell their own stories, to the chagrin of their "professional advocates", and I discovered that their reports were hauntingly similar to my own experience. Many of them felt as "out of place" in society as I have felt all my life.

People are Autistic - Deal with It!

I don't mention these things in order to solicit your sympathy. I do it in this case to point our that some people have vastly different lives than what would be considered typical and that most "typical" people go through life stunningly ignorant of this fact, often by nearly violent choice. To them, everyone is (or should be) pretty much like everyone else. Truly different people, like me, sometimes have different pains and sorrows, hopes and dreams, and often vastly different capacities, which I don't expect that normal people (which I often call locals) can really relate to adequately. We don't have something as superficial as hair or skin color separating us - we are fundamentally different and my difference may give me certain advantages.

Pavlovian Canine Obedience School for Autistic Children (PCOSAC)

Strangely, people like me can often relate decently with the way a local is likely to feel in a given situation because such local perspective gets crammed down our throats via formal or informal behavior training, which I call the "Pavlovian Canine Obedience School for Autistic Children". Most "intervention" to deal with autism are thinly-veiled behavior modification programs that demand that autistics spend their lives obsessing over things like walking a straight line exactly 12.5 inches from the right-hand curb of the street. Although such things might help the autistic person keep from splattering their own blood and entrails on a local person's beloved car, it makes for a tragically tiny and uninspired life. Normal "local" people get wide lives full of opportunities while my compatriots are forced to weave bizarre "social straightjackets" for themselves.

Of course, there is no comparable school for the "local" kids. This world and its society are created and sustained by the adults they will naturally become one day. Let me be just a little more clear: I have to live in a world that suits locals, but they seem to have no desire or interest in carving out a bit of existence that would actually suit someone like me.  Because my perspective is not drilled into everyone else, a local hasn't a hope of understanding how to relate passably to someone like me (though some get paid handsomely for saying they can).

The Potential Upside of Autism

It is like I am an adequate bilingual living in a predominantly English-speaking town - I can move decently among two kinds of people but English-only locals cannot. I have the upper hand because I have a rich autistic life (if I am allowed to live it) and I can also move around tolerably well in your local culture (because you forced me to do so through behavior modification), though in a noticeably diminished way. I enjoy a thousand dual-citizen advantages! I can have a deeper understanding of things, born of my rich wanderings in places you cannot or choose not to go, where a local boy can only draw on his limited one-culture "this is the way things are done around here" experience. So, you need not pity me!

Frankly, I often pity the poor local. You cannot ever share in the autistic-like capacities that created the likes of Albert Einstein or Issac Newton or Bill Gates. Locals really lack the tools for building that kind of genius in scientific or technical endeavors. In a twisted way, I have to thank locals for working so hard to force me to understand your world, because I can honestly say that I feel badly for you. You have taken great pains to teach me how incapable you can be!

Making a Better World for Everyone

But this post is not about how I realized that I might be on the autistic spectrum or how sad you might feel about being left off of it. We are all on this planet, whether we want to be or not, and we should give everyone else on the planet a bit more latitude toward making their own lives pleasant. There is nothing more sinister than to see an adult pushing a child to do something they are not suited for, typically for no better reason than the convenience or pride of that adult. Autistics, like any other oppressed minority, are accustomed to being shoved about, being told to behave in ways that make no sense to them, being shouted at in a emotional language that they don't understand, and being "acclimatized" by force toward a world that ignores their peculiar gifts and potential contributions. These things have less to do with our being autistic but much more to do with our hoping to feel a little welcomed. After all, it was people like me that brought you television cameras and receivers, radios, computers, game consoles, and iPhones. You'd think locals would be a little grateful for the creative ability behind their favorite toys.

My Favorite Martian

My explorations on the Internet have revealed that those who are either autistic or associated with autistics have come to a meeting of the minds on one thing at least: people with autism act like aliens. Now, the tender-hearted can flinch at the discrimination in that statement, but many of those on the autistic spectrum, including myself, find this to be a very accurate and poignant description of our experience. We do feel like aliens (or foreigners or strangers) and others (sometimes with unmasked cruelty) concur that we seem that way to them. There must be some truth to it, to have such agreement among such disparate groups. Therefore, armed with this apparent truth and the fact that I can be clinically included with a group that is often considered as such, I present myself to you as an alien, a stranger to your world, a foreigner to your ways, who lives (almost) secretly among you. Some of my interests during this post are to ask you to treat me and those like me as you would any visitor from a distant place: with a little consideration of our strange ways and a little respect for the unique abilities that you seem to lack.

This is Not My World

Of course, being an alien, it goes almost without saying that this is not my world. It is obviously not set up for a person like me. It is set up for local people, and I will tell you why I think so. I feel correct in saying that it was people unlike me that put many of this world's draconian social standards into place. I know it was not people like me, for if I had done the job, I would have ordered things toward making people like me feel more free to chase our obsessions and create new things. To a great degree, this is a world that has been fashioned to better suit needs outside of my own. As I said at the very beginning, this is not my world.

In case you hadn't noticed, there are some pretty satisfied people here on this planet. They seem to have lots of money and toys, act in very powerful ways, and like getting lots of attention. They only sacrifice when they must to keep less rich, less powerful and less popular people from stealing these things and killing them. They certainly won't be sacrificing as much as you or I. Society and culture certainly seem to favor them and their way of thinking and living, to the pain and horror of many. This seems to be their world, or a world that they have worked very effectively to establish a hold over.

The Palace of Thugs

It is like when a band of children find a secluded, vacant building. They establish themselves, bring in food and drink of questionable worth, import raunchy entertainment, and immediately start in on that paragon of human pursuits: establishing the "pecking order". You soon have a handful of kids that domineer and bully over all the rest. They have the best of the stuff and they only share the crumbs if you become their "stooge". Everyone else hangs about trying to look "cool" while accepting abuse just to be around the "really cool" kids-in-charge. Being "in" the building is much better for them than never being allowed near the building, which is the fate of the "dorks", "nerds", "geeks", "goths", and a million other kids. It all seems like the "fun" will never end, but then, The Responsible Adult enters the building and everything gets cleaned out. The bullying kids and their stooges are carted off to reform school where they belong; the "in" kids get a good whipping for hanging out with thugs and are sometimes never trusted again; and everyone else enjoys their much-improved lives without having to deal with megalomaniacs. The building gets razed and a nice apartment house full of nice people takes its place. Even in the movies, this is typically what happens.

Now, think about this world you live in. It is a lot like that building. It is sort of run down and unkept. The nice stuff that was in it has been either broken or defaced now, as anything will become when left in the care of thoughtless children, no matter their age. If you think I will mention the thoughtless treatment of autistics here as some sort of metaphor-within-the-metaphor, I just did. I always think of the beautiful buildings that were constructed in the past that are now abandoned heaps in favor of slapped-up mirror-image monstrosities that will cave in on themselves in twenty years. You don't bother to build nice endurant things in a world of raging children because they will just tear them up.

The Pyramid Scheme

I might as well focus in on these children in the building. Left to themselves, they always turn to destruction, mindless recreation, and a mean kind of universal loathing. Then a human pyramid forms with the most cunning, evil, and brutal kid at the apex, twisting the rest to their will by whatever means seems interesting at the moment. Though your local world prides itself on the sophistication of their pyramids and the inability of anyone to overturn them, it is still exactly the same structure that can be found among any group of five-year-olds. From my vantage point off in some "alien" corner, I can report that the pyramids I have seen seem sturdy and, though the names and faces on the various levels may change, the structure never has, so far. Kids will be kids, it seems.

There will always be the "mid-level managers" in these pyramid systems, "stooges" to the higher folks and getting a real thrill from stomping on the poor souls beneath. These people are the ones that cop the familiar plea that they were "just following orders" while enjoying the perks and rewards that fell from the table of their superiors. Parents, teachers, and experts can easily fall into these relationships with their charges, finally able to dish out some of the abuse that they had to take in a younger day. Of course, this is reprehensible even in local society, except when doing the "angel" service of twisting autistics to society's will.

Most locals spend their time inside the figurative building where society has taken up residence. It is often painful and lacking in happiness to be there, but one always hopes for the chance to be noticed, to have the kid at the top of the pyramid see them and perhaps (well, never) bless them with a place in the upper strata. Of course, such climbing in the pyramid scheme necessitates some other person's social death, one way or another, and it is always entertaining for the mighty to watch a dozen pride-starved maniacs fight for the one open seat on the next level. In the local world, this fight manifests itself when one buys a house they can't really afford, just to "keep up with the Joneses", or when you lose what few morals you have left by lying about a coworker to get a promotion at work. "I worked hard to get where I am." Yes, they certainly did and there are broken bodies and souls strewn around to prove it.

The View from the Alien Seats

I have an interesting perspective as a person who was always outside such buildings. I am an alien, you remember, and aliens have no place in "decent" society. Honestly, as an adult, I am now very glad that I am socially inept and was never invited to participate in the "stupid pet tricks" that locals seem to inflict on each other. Though I have my own alien problems and concerns to deal with, I at least avoid the embarrassment of getting caught wearing a "jock strap" on my head as a dare when the adult suddenly rounds the corner.

It is true that the adult will come. He usually gets called "God". I assure you that he is coming and he isn't coming to ask everyone to just get along and pick up the place. He is coming to tear your playhouse down and get rid of (that is a euphemism for "kill") the riff-raff. Unfortunately for many locals, everyone still in the building when he comes will taste some punishment and he doesn't often listen to "just following orders" excuses.

"Saving the Earth"

Now, I understand that this is not my world, but most locals perceive this as their world to do with as they please, and who am I to argue that point? Environmentalists are the worst for flinging guilt and blame about in the name of "saving the earth", as if they knew anything at all about the subject, much like some parents and experts do all kinds of havoc in the name of "saving" the non-verbal autistic children. As an alien, I feel I am in a better position to relate to the feelings of a non-verbal things like the earth and I say it probably looks forward to the time that the noisy kiddies get carted off to reform school. The earth will feel much better when the derelict buildings are demolished, the pyramid-schemers are swept away, and only nice people and nice apartment houses and such grace its surface.

No matter what anyone else thinks, this is actually God's world. I am likely here because he hasn't evicted me yet. He evidently hasn't evicted you yet, either. You may think that he will never get around to it, just like locals think they will never really have to pay off their credit cards. I assure you that all payments will come due, God the adult will enter the building, and he will clean house, no matter what the kiddies have imagined to themselves.

Some Advice

It would be unkindly of me not to offer a bit of advice after painting such a dark picture of the predicament. I will try to set a better example than many of the locals who get such a kick at mocking people like me that are outside the perverbial building. That isn't very kind, but I won't be following that lead, which is at the crux of my advice: don't follow where society leads.

First, you must leave the building right now if you are in there, and you might as well consider yourself in the building whether you think you are or not. Most people are almost inextricably tied to the culture that raised them and it can be difficult to break free of it, I am told. As I was never really a part of the "local" culture, I wouldn't know. You must break free of society so that you may see it as I do, from a position a few steps away. It may horrify and embarrass you deeply, but you will be a better person from the experience.

Second, you must encourage those around you, especially those you care about, to come out of the building as well.  You must be prepared to be ridiculed and savaged for doing this, as you are asking people to commit social suicide.  I mean, I get strange looks from people who discover that I haven't watched television in years - imagine how people will react if you actually turn about and paddle backward against the established flow of things!  Now, it is routine for me to be a social outcast, but I know others will mask their terror at such a thing by making you look and feel stupid.  You will have to lead out and show them that there is still oxygen outside of the building!

Finally, you must never turn back.  There is the old story of Lot's wife, who turned back after leaving the ancient Sodom and its alluring poison of sodomy.  She wasn't resolved to her new and better course and she longed to return to the familiar and evil.  God turned her into a pillar of salt for her longings.  Now, don't forget that God was also burning the city and all its inhabitants, so getting out of the building that society has built doesn't seem to be enough - you have to stay away and get rid of your taste for those things.  That is your only way of escape from that burning / house-cleaning / demolition that is coming.

A Final Word

Well, as I said at the beginning, this is not my world and I really don't want to become a part of it, no matter how much parents or therapists or "do-gooders" try to do me a favor and drag me into it.  I hope you see that I am working to entice you to reject this world as well.  Whatever perks you have will not compensate you for the pain that awaits those who hunker down in the building and embrace the things of this world and its ways.  You don't have to be an autistic to escape, though that helps and I must thank you locals for taking great pains to convince me to stay away! Do yourself a favor, follow my lead, and make sure this is not your world as well.

Thank you for you attention.