Self-Awareness in Living with Asperger Syndrome - (c)1998 Dave Spicer
This presentation was given at the Asperger Syndrome conference held in Västerås, Sweden on March 12-13, 1998.
INTRODUCTION:
This presentation will be something like a buffet offering an assortment of food items - it certainly is not necessary to accept them all. I should also say that I generally use the term “autistic” to describe someone with Asperger Syndrome - I hope this does not cause any difficulty.
Along with being autistic myself, I am also the father of an autistic son, who is now 13 years old. I have thought hard about what to say that would be the most useful to parents. I cannot offer a long list of strategies which have worked for me... for the past three years my son has been in what is called “therapeutic foster care”, because it best meets his needs. He lives with another family, although his mother and I still have legal custody of him, and we each spend time with him every week (we have been divorced for many years). So I will focus on my own experience, hoping that the parents hearing this talk might gain further insight into their autistic children, benefiting them both.
To the other autistic people here I say this:
We each have a right to exist.
We each have the right to an identity.
To protect these rights, we need to be able to interact with the outside world without being consumed by it - to find a balance between helplessly letting everything in and defensively keeping everything out.
My hope is that autistic people, too, will find some useful ideas in this presentation.
I am not quite sure what to say to the professionals in the audience - some of the ideas and descriptions I will give may seem unusual, but I feel they can be useful in considering autism from some different viewpoints. Perhaps they can illuminate aspects of autism which might be difficult to see unless one looks from a different viewpoint than usual.
BACKGROUND:
I was diagnosed with High-Functioning Autistm and Asperger Syndrome three years ago at age 46. The diagnosis was made by TEACCH in the United States. Up to that point, I had spent many years during which very little of my life experience made sense. Patterns of social and work-related difficulties kept repeating for no apparent reason, and with no apparent way to change them. The same behavior which is puzzling in a child can become very distressing in an adult, and the reactions of others to this behavior change as time goes on. On one hand, amusement turns to mere tolerance, then annoyance, then anger. On the other, puzzlement turns to concern, then worry, then fear. My experience is that an autistic person seeing these reactions to himself or herself in others can be expected to internalize the anger and fear, and to begin to feel this way about themselves. This in turn can intensify feelings of isolation and alienation, possibly leading to further retreat from others, or hostility, or both. The desire to escape from such feelings can express itself in a number of ways, some of which can be quite harmful - for example, I tried for many years to medicate these feelings with alcohol. This did not work.
Social stories have helped autistic folks to learn new skills. Having a script to follow can certainly help to lower one’s anxiety, and increase the chances for success. But I need to point out that, in the absence of supportive, affirming scripts, it is possible that an autistic person may develop very different ones on his or her own. The one I came up with went like this:
“There is something wrong with me. I can’t do things right. Everyone is mad at me. No matter how hard I try, something goes wrong. Other people can do the things I can’t. It must be my fault that I’m having so much trouble.”
What self-awareness does for an autistic person is to allow this kind of script to be changed if it has developed, or, ideally, to keep such a destructive self-image from forming in the first place. As a tool for helping the world - or at least the closest parts of it - to make sense, self-awareness can give autistic folks the opportunity to experience less anxiety. If life can be seen as less chaotic, there can be less need for desperate, rigid attempts at control. If one’s own responses to situations can be predicted, then minor problems may not have to automatically escalate into major ones.
What makes it really necessary to develop this self-awareness is that, if a strong tendency toward self-centeredness is hard-wired into us autistic folks, then it will always be there. So living with it is like driving a car with a bent frame, where the steering wheel has to be cocked to one side for the car to go straight. Otherwise, we would keep veering off the road while complaining that we holding the wheel straight ahead.
If we can keep working to gain self-awareness, then as time goes on, it becomes possible to do more than merely survive. It becomes possible to take an active part in charting the course of one’s life. It becomes possible to find fulfillment.
SENSORY ISSUES: the sensitivity of many autistic people to light, sound, touch, and so on is well-known. My own experience is that, especially when I am under stress, sensory inputs are like puzzle pieces lying scattered on the floor. Each separate one is clear, but they are not integrated together.
I think that there are other factors which could be considered sensory issues as well.
For me, heat is very strong sensory input that won't go away and that takes a huge amount of energy to ignore, like an air hammer breaking the pavement just outside one’s house. After a while it wears me down trying to cope with it. The feeling of stress goes well beyond the physical sensations themselves.
Fatigue also seems to be sensory input: as I become aware of all my body’s feelings of tiredness, there is more information to try to process, on top of everything else which is coming in. After some particularly difficult situations I get intensely tired, and if I can sleep even for an hour it is like starting another day.
But fatigue can be a useful tool - let me give an example. Some time ago I stayed with my family for a week. The visit went pretty well, but I was very aware that I acted nonautistic a lot of the time, especially with my older brother, whom I patterned my "default social interface" after.
The trip from there back to my own apartment was about 1000 kilometers, which I deliberately drove all in one day. Doing this was a way to get "me" back. When I've been driving for many hours, a lot of my interface falls away and what's left feels like "me". By the time I was toward the end of the trip, there were sounds of the car and the stereo and the tires, and there were sights of the road and the traffic and the instruments, and there were the feelings of various aches and muscle tensions... and each of these was in a "place" somewhere around me, like being in a galaxy and having stars at different distances and directions from where I was located. But the "me" was empty, just an awareness, a point in space. What was inside my body and outside my body was all the same. When this happened I knew I had "me" back. The adaptive structure had fallen away. It is a special time for me when this happens.
I also have to deal with memories as sensory input - mostly, these are well-preserved scenes of failed interactions with other people. They are crystal-clear even after several decades, and I experience them as strongly as I would experience bright lights or loud sounds.
Thoughts - especially repetitive, obsessive ones - seem like sensory input to me as well. At times I may become overloaded with them and “shut down” as I would from other stimuli.
My doctor has prescribed an anti-stress medication, which I take as needed. It is an unusually small dose, but it is effective for me. This same kind of sensitivity seems to extend to my own adrenaline. It may seem odd to consider adrenaline as sensory input, but this description seems accurate to me. I become overwhelmed by it, and my level of functioning drops rapidly, including speech, ability to understand situations, and judgment about how to respond.
Our skin has an outer layer of dead cells for protection. Without this outer layer, heat and cold - even touch - can easily be painful because our nerves are directly exposed to the outside. Well, maybe most people have an "outer layer" in their minds which helps to protect against experiencing things too directly - by taking some of the literalness away, or by "turning down the volume" of others' emotions and reactions. This seems to take place developmentally at some point as a child grows.
Maybe some of us never develop this outer layer. And so we go around feeling everything... and try to compensate by learning to appear to ignore things, or to "not care", or to keep a tight lid on our feelings, so tight that we barely know we have any. And when they try to surface anyway, the stress and anxiety build up... and trying to communicate when stressed seems like trying to speak when one is underwater - there is this pressure which tries to keep the words from coming out.
METAPHORS: DESCRIBING WHAT BEING AUTISTIC IS LIKE
I sometimes feel as though I was issued a kit instead of a "ready-to-use person", and some of the components in my kit, anyway, leave me scratching my head and muttering about who decided which parts I got, but I do this with at least half a smile on my face... daily life becomes more of an adventure than most nonautistic folks probably experience. The combination of great ability in some areas and great difficulty in others makes it quite a task for me to sort them out: “these will work as-is... these will work with some modification... what on earth do I do with these?” In an effort to describe this adventure, I have thought of a number of metaphors. Hopefully some of them will be useful in understanding what life is like for an autistic person.
At some amusement parks, there is a large cylinder on its side with open ends. It rotates along its length, so that people can walk through it if they are careful. But imagine the rotation starting and stopping without warning, or speeding up greatly under stress. Now imagine these cylinders being invisible, and being placed around everyday life randomly. Life is sometimes like that for me.
If anyone has used a drinking fountain which is either completely off or completely on, that's a decent model for my emotional responses. It's very difficult to get a reasonable amount of water from the fountain - it takes a very delicate touch, and the slightest disturbance can either shut it off or have it stream all the way to the ceiling.
Attempting to perform some tasks can be like eating soup with a fork. Depending on the nature of the soup, the results can vary from quite good to terrible. Other tasks are like eating ice cream with a fork - the autistic person must be ready and must not be interrupted. Think of the anxiety and frustration you would feel if you had to wait, seeing the ice cream melting and knowing you could no longer eat it because all you had was a fork.
Or think of a lake in which the water level has dropped a great deal, revealing things which are ordinarily hidden beneath the surface. In this way, perhaps we autistic folks are aware of things going on in our minds which are not ordinarily in conscious awareness - thoughts, impulses, unfiltered sensory input - as though the divider between conscious and unconscious thought had moved.
Next, imagine having to constantly wear glasses which give you extra-sharp vision. Now, take a tour... admire the scenery, see the details in tiny flowers, the visual texture in stained glass, all those things. But then go into a hospital emergency room. A family-relations court. A war zone. See how tragically unnecessary all the suffering is, and realize that since time immemorial no one has managed to find a way to stop it all. Or go into a school classroom, or hallway, or cafeteria. Now, hear every whisper about you, see every smirk, be painfully aware of the impatience and frustration of the teachers. Be unable to shut all this out. And experience all this as a child.
Or suppose you are colorblind, and cannot distinguish between red and green. You are in a room with other people, all of whom have normal vision. No one - not even you - knows that you are colorblind. Everyone is handed a list of instructions. They are printed in red against a green background. Everyone except you knows exactly what to do. They cannot understand why you just sit there. The paper looks blank to you, and you cannot understand how the others know what to do. Think of how you would feel, especially if the others stared at you, or whispered, or laughed.
To better understand the anxiety we sometimes feel, picture a child sitting on a swing. Imagine that she is not able to hold onto the ropes or chains supporting the swing. This means that she has a very hard time getting the swing going by herself without the risk of falling off. If someone wants to help her to swing, the pushes have to be gentle, and it will take a while to build up speed. For the same reason, slowing her down has to be done gently and gradually. And parents, imagine yourselves in this same situation. How insecure or anxious would you feel? What if someone suddenly pushed or pulled the swing when you didn't expect it? What if others around you were swinging without difficulty, and became annoyed or impatient when you fell off? Imagine hearing these words: "You're just not trying hard enough! What's the matter? I know you could do this if you really wanted to."
Looking for rationality or consistency in autistic behavior may seem at times like looking in a funhouse mirror, but think of how the rest of the world would look to someone who is inside the mirror. In math, this kind of difficulty-in-understanding happens when switching back and forth between rectangular and polar coordinates, where things which are very easy to represent or explain in one system look pretty strange in the other. Imagine telling someone in a city to use a compass and head south-southeast. They'd probably have to go right through buildings and rivers and trees... it'd be impossible. And there aren't any city blocks on the ocean to count and turn at. A procedure which works well in one system is unusable in the other. Accurately describing the mathematical term “pi” is very easy in words, and impossible in numbers. Dogs and cats each wag their tails, but the meaning is very different depending on which animal is doing it. Neither one is doing it the “wrong” way, they are just different.
Trying to identify some of us autistic people is sort of like drilling little holes into pieces of bread to take samples to see what kind of bread it is. Even if the bread is one of the more-interesting kinds such as raisin, spinach, or zucchini, if the holes are drilled in the places where there is regular dough, the tester might conclude that it's regular bread, and be completely unaware of the more-unusual ingredients.
BEING “HIGH-FUNCTIONING”
Because of the specific skills associated with having a fairly-high verbal IQ, I can put words together in a way which can usually be pretty well understood, and would not be identified as "sounding autistic". But this, to me, is as though I were very fluent in a foreign language. My "native language" doesn't seem to have any words... thus, if I had to use only it, I too would be nonverbal. It is only the use of adaptation which permits me to use words as I do. It is not my fault that my makeup happens to include the technical ability to use words in certain ways, in imitation of what I see other people doing. Some autistic folks multiply large numbers; I construct large sentences. It sometimes happens that this skill is useful in expressing certain ideas. Examining the structure and flow of the words I write might lead one to make assumptions about me based on those observations. Such assumptions would likely not be correct. What appears to be seamless integration is actually the skillful use of an "interface layer", a veneer. If people tell me they would have no idea I am autistic, it is because they are seeing the interface layer, not me. It serves to mask, mute, and “adapt away” my differentness for the convenience of those around me. The inclination or desire may be to assume that "I" reside in that layer. I do not. It mostly-surrounds me, and is almost always kept in front of me, but it is not where I am located.
But having a good interface means that the amount and scope of an individual's efforts at conformity would go undetected until they either failed pretty spectacularly or led to the person breaking down under the accumulated stress. Thus, an individual could be trying extremely hard to do what was expected, and have that actually work against him or her unless there had already been identification and the providing of a support system.
Sometimes we more-articulate autistic individuals are told that we have no understanding of other autistic people - that we are somehow different from them. I have been told this once or twice myself on the Internet. At these times, I think of a man named Vladimir Posner, who was a television commentator in the former USSR. He spoke flawless English, and certainly did not "sound" like a spokesman of the USSR. To me, trying to separate us more-articulate autistic people from our brothers and sisters elsewhere on the autistic spectrum is like suggesting that Vladimir Posner had no particular insight on the Soviet Union because he spoke such good English. It seems absurd. The interface is not the same as the individual behind it.
To use another example, it is possible to buy many different kinds of footwear, which are like different adaptive styles for different situations. I do not wonder “which of these sandals and shoes and boots am I today?” - it is clear that I am simply using them as tools.
There is a difference - from my point of view, a very big difference - between a nonautistic person who insists "But I'm just like that too" (meaning "I also exhibit that behavior") and being autistic. Maybe like the difference between someone who occasionally sings opera and a person whose only means of oral communication is to sing opera. Even though the behavior under discussion looks similar in a specific instance, the two are far from the same.
What is especially frustrating to hear is the opinion that some of us, rather than being autistic, merely have a few “autistic-like traits”. Well, suppose a wheelchair athlete came to a stairway and managed to get up it by dragging himself or herself with upper-body strength. Would it be reasonable to say to the person, "You are not disabled; you only have a few disabled-like traits"? I think not.
OTHER ASPECTS OF AWARENESS:
It seems possible - I am choosing to believe that it is possible - to take two different approaches to life simultaneously. That is, to see it as a "show" - a staged performance - and to participate in it anyway, but not just as an "actor". What becomes possible then is really interesting. Not being drawn into the tired old plot lines with all the other actors who stick to their depressing parts, but being able to choose moments - just moments - of genuine contact. A glance, a kind word or two, maybe just holding a door open for someone... smiling at a child... helping things flow more smoothly. And then disengaging and moving on... this can be an interesting way to get through the day. Sometimes on television there will be an advertisement in which the entire scene is black-and-white except for one person who is in color. It is a striking effect... that person is there, but is "different". Well, so are we...
In a car magazine many years ago, I remember reading that some cars with good aerodynamics seem to have no properly defined top speed... that, on long straightaways, they seem able to always pick up just a little more speed. This same principle exists in living with Asperger Syndrome, I think... that at any time, little increments of growth can show up, and we keep putting forth our best effort, and holding onto our gains as best we can, and leaning a little harder into the wind...
I have heard a number of parents express concerns about friendship. To me, an autistic person’s not having friends could mean at least a couple of different things. One might be that a person is outside of the accepted, functional, well-working social system, and so is shunned. But another might be that a person is unwilling to participate in the rituals of jealousy, pettiness, cruelty, status-seeking... and all that is needed for such a person to begin a friendship is to find - and learn to practice - acceptance and tolerance without all the other dysfunctional stuff sometimes referred to as "normal". What I feel is the most important in friendship is mutual acceptance and a willingness to understand each other... along with seeing my son regularly, I am in contact with several other autistic adults I have met through TEACCH. I am not that concerned about what our interactions look like to anyone else - they work well for us, and that is what is important to me.
The concepts of mutual acceptance, and respect, and willingness to understand are of course valuable in an intimate relationship as well. I was married and divorced twice, years before I had any awareness of being autistic. Presently, I am engaged, and my fiancee and I are both working very hard on our relationship. I am autistic, and she has Attention Deficit Disorder, and things get pretty interesting... but our desire to understand, and our love for each other, are making it possible for us to have a successful relationship, one day at a time.
Trying to accommodate everyone’s expectations would be like having a violin, say, and trying to tune it to every other instrument I encountered, even those which were badly out of tune themselves. This would be impossible. All I can do is tune my instrument in a way which sounds good to me, and then seek other instruments which sound good when we play together. A better example for an instrument would be one with drone strings - there is a Swedish folk harp like this, yes? The drone strings will vibrate on their own, and the musician must take this into account. Well, perhaps an autistic person’s nature has characteristics like this, which will appear and must be taken into account. Some very good results can still be obtained, but there must be awareness of just what kind of instrument is being played, and what music would be best played on it.
I don’t do things the way most other people do, but that doesn’t mean any of us is “wrong”. At the risk of sounding mystic, I would suggest that we are each examining different facets of the jewels of learning, growing, and living more awarely. We are each looking for what we need.
The same kind of thing holds for me in other areas as well. If I relax my standards of tightly-adapted behavior, my appearance, gait, and actions would start to look more and more clearly autistic. What generally keeps them from being this is not some fundamental difference from some other part of the spectrum, but rather the degree of conditioning and adaptation which I exercise. And the same is also true for my emotional nature. As a person with a developmental disability, I recognize that my level of emotional maturity is highly variable. All the old habits and patterns of behavior are cataloged and still available to me, and sometimes it's a struggle not to use them, and sometimes I do anyway (and get the appropriate not-so-good results). It took a long time for me to learn how to do things differently than the only way I knew how. I was stuck for many years, was miserable, and shared this misery with those around me.
The process for me is one of learning and practicing, piece by piece, and putting together something that works okay. Much is trial and error, and progress is uneven, and my level of social maturity in everyday situations is still generally well below my actual age. But what I'm finding is that things are getting better as time goes on - that there need be no end to the process of learning. So perhaps it's one of those "good news and bad news" situations. The bad news is that we have to work on it the rest of our lives... and the good news is that we get to work on it the rest of our lives. I don’t feel there is anything magic about being able to do this. Perhaps some of you have seen an Artesian well. That's a place where water comes out of the ground on its own, seemingly "out of nowhere". It might be useful as an illustration of how creative expression can flow out of us without having to originate in us... that we can be conduits for it. And out it comes, in our own style... so that the energy came out of Louis Armstrong as trumpet solos, and out of Kahlil Gibran as spiritual prose, and so on... and we don't need to worry about running out of it. All we need to do is to not trash our well.
Gaining self-awareness, for me, is like refinishing furniture: here's this decrepit-looking old desk, say. After looking closely at it, I see one place where the top layer of the paint is coming loose. This means that the unappealing-looking top layer is not actually part of the piece - that it can be taken off. Doing so reveals another layer, and so on... until the original beauty of the piece is finally revealed.
My experience has been that I have not so much "closed the gap" with nonautistic people but that I have learned, deliberately, what behaviors are appropriate for what situation and so on. Thus, I can appear to have grown closer to nonautistic folks' nature when actually I have advanced along a kind of parallel path. If I feel I am missing out on some parts of life, I can examine them - from a distance, anyway - and see if I would really want them in the first place.
For an autistic person, the attempt to completely "fit in" would be like a Macintosh computer trying to do a perfect emulation of a PC, where the one computer runs special software to make it act like the other. Usually it is terribly inefficient, and tends to leave out the more-difficult functions. It might be possible to do, but at enormous effort. Because some autistic people are able to emulate nonautistic behavior, at least part of the time in some circumstances, doing so does not make us less-autistic inside. Rather, it makes us somewhat more able to partly function in a foreign, often-hostile culture which for some strange (to many of us) reason is referred to as "normal". I think the goal should be that autistic and nonautistic people are able to talk to each other without having to try to be each other.
My difficulties, yes, they exist. I face them. Many others have difficulties which are not being faced - illusions of "communication" empty of meaning, illogical "status" games, manipulation by those-with-agendas such as mass advertisers.
So I do not mind having someone say, "yes, I see how that is difficult for you", if they are also willing to hear the same thing from me, because in my opinion it is equally true. I guess I am "disabled" relative to some societal expectations, but internally? Perhaps - but this is from decades of trauma, not from my inherent nature. The most healing thing for me now is to consider myself as different-by-nature with some secondary consequences which I'm carrying around with me until I learn how to put some of them down. Others of them I will carry throughout my life. That is all right.
If there is some generally-agreed-upon social "dance" which is done, an autistic person may not involve himself or herself with it but instead just walk over to where the dance is leading. Society might value the dance, and its being followed, quite highly, but the desired mutuality might not be forthcoming from the autistic person. If we seem lost in some situations, I would point out that there are different kinds of "lost": one kind is a confused, disoriented person stumbling down the street of a quiet, well-kept neighborhood; and another kind is a quiet, thoughtful visitor who accidentally walks into the wrong part of town. Many social situations feel like “the wrong part of town” to me.
Some television programs are captioned for viewers with hearing difficulties. I can do something similar for myself in everyday life and think of captions for the events I encounter, which will help me understand them. I can put as much humor into my captions as I wish, as long as I do not laugh too much at what I see...
I think there's a lot that can be done along the lines of appealing to an autistic person’s self-interest... that a lot of useful behavior, approaches, and attitudes can be presented as being in one's own interest and are therefore very sensible. I didn't have as much of a problem with rules and guidelines that made sense.
What I needed very much as a child, but did not have, was a place where I could feel whatever I felt without people becoming upset or stressed, trying to talk me out of my feelings, inducing shame for my having feelings, and so on. So the energy from the repressed emotions showed up in a number of different ways, many of them harmful to myself and to others. What I needed to hear, but did not, was something like this: "It is a special gift to be able to feel things so deeply. Your feelings can soar like a kite in the wind. Listen to them and talk to them and enjoy them. But remember to protect your feelings when they might be hurt, just like you would reel in a kite when a storm comes. And if your feelings are hurt, like a kite that is torn by a strong wind, it is okay to ask for help in patching things up again. A kite can fly just as high with patches in it... and so can you."
My opinion is that, in navigating imperfectly through life, "getting by" does not imply some half-hearted, listless existence that somehow cheats others, or ourselves, or society. What it means, to me, is engaging things as they are, not in some white-hats vs. black-hats battle but in our everyday lives.
Many ordinary activities which are easy for most people are hard for me. In a way, this is a serious obstacle, but in another way it's quite useful. Some people try all kinds of activities like bungee jumping or mountain climbing or "extreme sports" just so they can face a challenge, and for the good feeling they get when they succeed. These kinds of endeavors can cost a fortune and take years to learn how to do... but we autistic people have lots of challenges already built into our lives. The opportunities to take on difficult tasks, and to give them our best effort, are all around us. That means that chances to feel good about ourselves are all around us too. No need to go halfway around the world to find something challenging, do it, then feel bored until we can think of someplace else to rush off to. All we need to do is open our eyes in the morning, and see what presents itself.
I see many opportunities for autistic adults and the parents of autistic children to work together. I want to say a few words about the differing expectations that each might bring to such gatherings.
As a parent, I would be seeking to gain understanding of my child, and to find support from other parents in similar situations. I would need to be able to speak frankly about what was going on in my life, and - especially - how I felt about it. In some ways, I would be seeking respite - trusting that, whatever happened in a particular day, there was a place where I knew I could talk freely about it and be understood and accepted. Above all, I would be bringing myself as I was - not perfect, not all-knowing, not mistake-free - hoping to learn, and maybe a little frightened at seeing just how much there was to learn.
As an autistic person, I would be seeking to gain understanding of myself... and wanting to share this understanding with others in a way I had not been able to before. If I had been diagnosed only recently, I would be reevaluating my entire life experience, based on this new information. Doing this would likely refresh memories of a great deal of misunderstanding, hurt, and frustration... and I would want things to be different, starting right now. If I saw anything that reminded me of being misunderstood, I would want to be able to speak freely about it, and about how I felt.
But I see where these could be working at cross purposes. As a parent, it wouldn't be fair of me to forget that autistic adults are autistic children grown up, and would not be likely to automatically be able to see things from a parent's perspective. So if I wanted to be able to tell an autistic adult, "but don't you see now why parents do things this way", hoping to be understood from a viewpoint that perhaps my own child does not have, I may not get the results I expected.
And as an autistic adult, I need to remember that a parent's presence at such a gathering means that they are willing to learn and to understand, but not that this life-long process has magically already taken place. It would not be fair of me to grow impatient at seeing some of the same questions asked repeatedly as new parents arrived, or at the time which the learning process takes, or at someone having an opinion different from mine.
CONCLUSION:
Every time we autistic folks can do something which is right for us, it strengthens us. It returns more control of our lives to ourselves - the responsibility, the accountability, the struggle, the growth, the sense of validation. We are living beings with the right to seek what we need to grow and flourish, without worrying about what that process might look like to anyone else.
It always puzzled me that if a poet or musician or athlete pursued his or her life with great determination and dedication, facing many obstacles, then that person’s life would be called a great success. Yet if we autistic folks do the same thing, our lives might be considered “tragic” by some. I do not understand this.
It may seem like stretching things to suggest that an autistic life can be an Epic Adventure - one of these sagas where the hero or heroine faces challenge after challenge in their quest, as, for example, in "The Lord of the Rings", or the wonderful television show “Babylon 5”. But I think the principle is the same:
The story opens, and I find myself in a situation different from most other peoples', facing challenges they do not see, fighting battles they know nothing of, searching long and hard for allies... and finding them at long last. Around me, I see many, many nonautistic people struggle to find meaning in their lives, seeking distraction or surface entertainment to try to fill a sense of purposelessness. And at the same time, here we autistic folks are, working hard to communicate, to perceive, to understand life... and sharing our successes and setbacks and hopes and dreams with each other.
The willingness to understand is precious, because everything else follows from it - the learning, the understanding, the growth, and the success. There is much to learn. There is much to understand. There is much work to be done. I am grateful there are places like this - and people like you - to do it with.
Thank you all.
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This page last updated: February 18, 2001