Thank you for inviting me to the Leadership Retreat. The very first things I want to say are a couple of housekeeping notes: it will help us all stay focused if you could make sure your cel phones are set to vibrate instead of ringing. Also, the transcript of this talk will be posted at my website, which is www.davespicer.org, so don’t worry about having to take lots of notes unless that suits your listening style. There are a number of other presentations at the website; look around if you get a chance. My talk tonight is based on two shorter ones I gave earlier this year, and it will take us on quite a journey. Feel whatever you need to feel as we go along, but please hold any questions until the end.
In speaking to you, I am bringing my own experience as an autistic person, and also my experience as a parent of an autistic child whose education was in the Buncombe County school system. Andrew was the first student to graduate from Buncombe County’s Progressive Education Program with a regular high school diploma. I am very proud of him for that.
It is possible that some of you have never knowingly met an autistic adult. That qualifying word is important, because something has to happen to autistic kids when they grow up. In the past few years there has been more awareness, and more media coverage, of those of us who are both adults and autistic. There are quite a number of us around. How have our lives turned out?
That’s a good question to ask. And for those of us with autistic family members, that one question brings others with it: What will happen? Will things turn out all right? What will our family members’ lives be like? What will our lives be like? Between them all, questions like these carry a great deal of emotional weight. Especially if - no, especially when - we find ourselves asking them in the middle of the night.
Predicting the future is beyond me. I usually have my hands full with trying to understand the present. But I have gotten a better view of the past - of my past - and I mention that for two reasons. The first is that I’m basically at peace with it. Everyone did the best they could with the understanding they had at the time. It took a while for me to come to that view, but I did get there. And the second thing about my past is that I can see what’s been happening over the years, and from that get at least some idea of which direction I’m headed.
It turns out that I’ve been growing inside. That growing has not followed the standard model of rapidly maturing through adolescence and into early adulthood, followed by an “adult” life. Some things have come much more slowly to me... but the remarkable thing is that they keep coming. I’m 60, and I’m still learning - and not little things which fill in a gap here and there, but big things which keep my life growing and expanding and feeling renewed. There isn’t a period of “good old days” to look wistfully back on. Rather, I’ve had the sense, for quite a while now, of being in the prime of my life - and having that prime move right along with me. The standard model is inadequate to describe what has been happening. I not only didn’t see that coming, I didn’t think anything like that was possible. I’ll take some time now to paint a picture of what things were like before my autism diagnosis, and then talk for a while about my present-day life.
I was born in Connecticut in 1948, and I’m the youngest of three kids. During the years from childhood through high school, I did okay academically but had all these perplexing social issues. Most of the time I was pretty quiet and didn’t mix with very many other kids; when I did the results were all over the place. Sometimes I could figure out what to do and say, and sometimes I’d wind up doing something really inappropriate and feeling embarrassed or humiliated. It was like I had a social learning disability. Because I scored quite high on various aptitude tests, everybody assumed that I was smart enough to know what to do. That meant that I was an underachiever who just wasn’t trying hard enough. There was plenty of frustration and disappointment and worry to go around.
I was living proof that there can be a very great difference between an autistic person's external behavior and his/her internal experiences. I was able to learn how to laugh at the right times, adopt the "right" tone of voice, gestures, posture, vocabulary, use of expressions, and (in many cases) social behavior. But rewarding an autistic person for acting nonautistic seems pretty likely to result in an autistic person who acts nonautistic. This is not the same thing as the person no longer being autistic. Rather, it can be a person sacrificing his or her own identity in order to gain the acceptance and approval of others. So by the time I was, say, 12, I came across as a quiet, polite, well-behaved child, and if anyone had asked me how I was doing, I would have insisted that I was fine.
I wasn't fine. The thing I needed most was not copious feedback on how to "act normally", but rather acceptance of me as I was, impairments and all, as a starting place to learn how to relate to other people and to understrand and work with my own nature. Without that, I developed a basically shame-based identity which found validation and acceptance only in behaving "correctly", regardless of the stress or difficulty I ran into while doing this. Since it was so clear that I was expected to be "okay", that’s how I said things were, regardless of how I actually felt inside.
You see, over time I had internalized others' beliefs about me and the things they kept telling me - that "there was nothing wrong with me", that I only needed to try harder, that if I really wanted to do things differently I could. In order to deal with each of these premises, I had to develop an interpretation of them, to translate them into something I could (at least partly) understand, and then turn into my beliefs about myself.
So "there is nothing wrong with me" became this: "Don't ask for help, because I'm not supposed to need any. Besides, if anyone looked really closely and still didn't find anything wrong, all of this really would be my fault. It's better just to have a small hope than to risk actually finding out."
And "all I need to do is to try harder" became "The other people around me are succeeding while I am not, and it must be as hard for them as it is for me. So I am never to complain about difficulty or physical discomfort. If anything is at all possible to bear, it should be borne in silence."
Finally, "if I really wanted to change, I could" evolved into "I am deliberately resisting having my life, and the lives of those around me, be any better. I don't know why this is. But everyone feels this way, and they can't be wrong because look who they are and how many of them are saying it." In other words, I was deliberately making the people around me upset and angry.
My understanding of what was happening around me had to be faulty, because so many things kept going wrong. I lived with a great deal of uncertainty about what was true and what was not. Unable to rely on my perceptions, I instead constructed a model of what I thought the world was, then lived in constant fear that someone would rush in and tell me that it was wrong. And that happened repeatedly - the experience of thinking things were going along all right, and suddenly being informed that they were not, due to something I had done hours or days earlier. In that moment, my understanding of the world would collapse. What I was left with was pretty bleak: I did not understand the world, they did not understand me, I did not understand myself, and there seemed no way any of that could ever change. It got to the point where I desperately needed help, but was so conditioned to “be okay” that I refused it. Yet many would call my autism “mild”. I would remind you that, on the scale of hurricane intensity, Ike was relatively “mild” too. Please be careful when thinking about that word in regard to autism.
Let me describe some more of what my thinking was like. As a child, I felt that managing my tone of voice and facial expression constituted emotional manipulation and was therefore unfair. The facts of the matter should be sufficient to demonstrate what I needed. When they didn’t, and I (typically) began to cry, I would hear people telling me they didn’t realize that whatever-it-was was that important to me. Weren’t they listening? I had to compete with others’ faces and voices using emotion-free reason. What’s worse, many people seem to feel that “sincerity” is something that can be turned on and off, depending on what they’re trying to achieve in communicating. So how do we autistic folks know what is true and what isn’t? And how many times are we made fun of, deliberately misled for sport, or taken advantage of? Or our wants and needs discounted: art history has many examples of an artists’ work being painted over because it was considered worthless - a waste of canvas. If I try to speak my truth, someone else could easily try to do the same thing to me: “Oh, you can’t mean X, you must mean Y.” Or, “No, you don’t want that, you want this instead.” And boy, can our neutral facial expression and tone of voice and so forth have things read into them! I can’t tell you how many times I’ve had people ask me if I was angry (or just assume that I was) because I had a flat expression on my face. They used that as a “blank canvas” to project all their stuff onto me. And it may be that entire autistic lives have been “painted over” in that manner.
In due course I graduated from high school and went off to college, where things got much worse. Hundreds of miles from home, and academically and socially on my own, I did what most other kids in that isolated small town did for recreation: I started drinking. It didn’t help. My social judgment, which was impaired anyway, became more impaired. Fumbling attempts at dating left me more isolated rather than less. My level of emotional maturity, already affected by developmental issues, was essentially frozen in place. I stopped growing. This effect is pretty widely known among those of us with substance-abuse experience. Drinking became self-medication for all the other stuff in my life that wasn’t working either, and that addictive pattern was to persist for seventeen years. I left college halfway through the second attempt at my junior year, failing every course. And my life went blindly on.
I 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 to annoyance, then anger. On the other hand, 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, thus 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. Some folks might become hypersocial to try to mask their sense of differentness and alienation, but I didn’t have the skill set to even attempt that.
So the fifteen years following college contained one brief, unhappy marriage connected with my college experience, several years of a struggling second one, and uneven work performance as a computer programmer, where the social stuff was harder than the technical stuff. By the early 1980s we were living in North Carolina, isolated and miserable. I didn’t understand the world, the world didn’t understand me, I sure didn’t understand myself, and it looked like none of that could ever change. Well, things did start to change when I got into alcoholism recovery in mid-1983, and my second marriage lasted long enough that our son was born in early 1985. We separated the following year. Somewhere in there, I began seeing mental health professionals for counseling. For a while, I would come home from work, turn on the TV in my little apartment, and sit in tears watching Mr. Rogers, letting his sense of kindness and caring, and of calmly being in charge, wash over me. I desperately needed that in my life, but didn’t know how to get it.
Now, fast-forward several more years: our son was struggling in school, entirely for behavioral reasons. Suspensions, conferences, phone calls to come pick him up, and so on. We had been to specialist after specialist trying to find out why things were so hard. Finally, someone suggested an evaluation for autism, and our son was diagnosed by TEACCH in mid-1993. My work performance had continued to deteriorate and I went on disability leave at the end of that year and was diagnosed with autism myself in the Spring of 1994. The cumulative effect of everything that had happened over the years was such that I have not worked since.
Okay. That’s enough to say about that here. Other material at my website goes into more detail for those who feel it might be useful to look at. My point in mentioning it at all is that back at the beginning I was telling you how cool my life is now, but I just finished describing years of stuff that sounds pretty dismal. So something must have happened to move things from where they were onto the path where they are now. And the rest of my talk will be about that process, what it has taught me, and what it continues to teach me.
The first observation we should make is that age 46 is not the optimal time to have a developmental condition identified. It was with me all along. But once it was diagnosed, and I began receiving support from folks who were familiar with what I had been struggling with for so long, and I began - finally - to understand myself, then some doors started to open. There were professionals who understood. What I had been experiencing basically all my life was real. And on top of that, there were other people like me. I was not the only one. Their style of thinking was familiar, and comfortable, to me. There were places I could go to meet with others like me - there were even presentations I could attend which were put on by people like me - and I finally felt like I belonged somewhere.
That was the beginning. In late 1995 I got online and discovered an Internet community of autistic folks which extended across several countries. I started getting into email discussions with bunches of people, some on the autism spectrum and some not, and started reading some of the books written by autism-spectrum individuals. The following year brought the first of a series of annual conferences of, by, and for autistic folks. That’s where I attended those presentations I just spoke of. Then in early 1998 I was invited to present at an Asperger Syndrome conference in Sweden. Later that year, I married a remarkable woman who is both knowledgeable and understanding concerning autism, and our shared dedication to the process of working on our marriage, and our love for each other, had us celebrating our 10th anniversary earlier this year. Our marriage has a number of adaptations and accommodations in it, and what’s important to us is how it works for us, not what it might look like to anyone else.
By the Fall of 2000, things got interesting in yet another way. After a 32-year hiatus, I returned to college - this time at UNC-Asheville, talking one or two courses a semester. It was both scary and wonderful. I was usually the oldest person in the room, including the professor. I loved the subject material and did well academically.
And here, another huge piece fell into place. Nearly all of the courses I was taking - and earning A’s in - were sociology. It is not intuitive that an autistic person would like, and do well in, sociology. That’s putting it mildly. But let’s think about it for a minute: these courses taught how humans interact and function in societies. They also taught why they interact as they do. Finally - a sensible explanation of why people do things! I could’ve used that decades ago. Without an intuitive sense of what to do socially, all I could do was imitate, often blindly and clumsily. But here I could learn not just what people do, but why they do it; what purpose it serves.
That in turn helped me to become more patient and tolerant with others, and more willing to be in social situations so I could watch and see what was happening. I could develop and utilize algorithms for socializing, in place of the intuition I lack. These in turn let me push my “comfort zone” a little and socialize more.
One particular course brought me up against an interesting situation: the established theory in that part of the field - an area of study called “symbolic interactionism” - didn’t seem to have any room in it for us autistic folks. It looked to me like we failed to meet the theoretical criteria for being human. I found myself scribbling lots of notes in the margins of my textbooks. Now, years of substance-abuse recovery had given me the equanimity to mostly find that amusing rather than insulting. (In other words, I could question the theories rather than questioning the parentage of the people who came up with them.) Just as I said at the beginning when I was talking about continuing to grow throughout our lifetimes, I found once again that the standard model was inadequate to describe what was taking place. And so I wrote about that - since my highest SAT score was in English - and that was more grist for the mill in helping me realize what interesting times these are to be autistic. There’s all kinds of research being done in different areas, and the awareness and understanding of autism are advancing on many fronts.
We on the autism spectrum who can communicate our experiences and ideas have a wonderful opportunity to be partners in this process. I feel that we also have a responsibility to do this for other autistic folks who cannot, because in living with autism, they are our brothers and sisters. I am grateful that we autistic folks also have the help of advocates, as long as others’ speaking on our behalf does not supplant our own opportunity and responsibility to speak for ourselves. Our voices matter, and for our own well-being, we need to be listened to.
After several semesters of taking courses at UNC-Asheville I stopped, feeling that I had accomplished what I set out to do. My first, nightmarish college experience was now overlaid with a successful one. The symbolic interactionism course led into an undergraduate research project, and my extensive notes from that project are on my website with all the other stuff. Since then, I have been speaking at Autism Society local unit meetings and other gatherings, and serving the autism community.
Right along with this - and making everything else possible - I have continued, over the years, in the daily process of substance abuse recovery. The structure, support, guidance, and wisdom offered there have allowed me to connect in ways that nurture me intellectually, socially, emotionally, and spiritually. And on top of all that, I am learning to take better care of myself.
All right. What we have so far is what sociologists would call an “overcoming narrative” - things were very bad, and now they’re very good. Even without early diagnosis and early intervention - or any services at all, since my childhood was in the 1950s and 1960s - and even after years of substance abuse on top of that, things can still work out well. In that regard I feel blessed. But the story doesn’t stop there - having found a way to contribute to society, that opportunity brings with it the responsibility to do so. That means continuing to talk about the experience of being autistic, in hopes that it helps others’ understanding and thus helps my brothers and sisters on the autism spectrum. So I find that I am duty bound to stand here and continue to talk about myself. (It’s a tough job, but somebody has to do it...)
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 probably 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.
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 their successes actually work against them. It might look - for a while - like they didn’t need help or accommodations any more. Or even that the classification might not apply any more. But accommodations make success possible, and withdrawing them prematurely could easily work against the best long-term outcome.
It’s awfully easy to assume that the process of verbal communication is all one piece; that the ideas go in one end and the words come out the other. But the more emotionally stressed I am, the less able I am to communicate, regardless of how fluent my ordinary speech might appear. The times when I need the most help are the times I am least able to ask for it. This has led folks to ask a whole string of questions, one after the other, before I could even finish answering the first one. I get overwhelmed and shut down. It’s counterproductive, regardless of how good the intentions are of the people doing all that asking.
From time to time, I have had nonautistic people insist "but I'm just like that too," meaning "I also exhibit this or that characteristic behavior" . As though it isn’t that significant. But think of the difference between someone who occasionally sings opera and a person whose only means of verbal communication is to sing opera. It’s the same behavior, right? But the larger picture is very, very different. You have probably heard of echolalia, in which an autistic person repeats a lot of the words spoken to him or her. But who says that’s the only way that echolalia manifests? Imagine behavioral echolalia, where others’ behavior is compulsively mirrored. Or emotional echolalia, in which others’ emotions are felt with sometimes-terrifying intensity. Much of the violence in movies affects me this way. My own adrenaline wells up and poisons me. I don’t watch very many movies.
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 autism 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, but somehow the assumption is made that "I" reside in that interface. I do not. It mostly-surrounds me, and is almost always kept in front of me, but it is not where I am located. What is societally accepted as my “identity” seems more like a costume I can wear - not a disguise, because I can still behave authentically - but still something I deliberately “put on” in order to interact socially.
That’s not to say that social interaction is easy for me. A lot of what I see doesn’t make much sense - it looks like people are flying with some kind of social radar, and part of the game is to produce fog and chase each other around! Of course we autistic folks will get lost, or fly straight into a mountain, or crash into other people, regardless of our IQ or vocabulary size.
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."
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, and I am now 60. 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.
Yes, 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. At 60, I still feel pretty young - so young that I need an afternoon nap most days.
Getting here has not been easy. As the parent of an autism-spectrum kid, I had to let go of all the assumptions and expectations I had about how things would work out. I had to become willing to do whatever it took, to “go to any length” as it’s sometimes put. In my case, this meant letting go of raising my own child. Some aspects of his school experience - particularly in the afterschool program - were going very badly, and Andrew’s mom and I were unable to effectively deal with the situation and advocate for what he needed. The atmosphere became very adversarial, and no matter how hard we fought, things kept getting worse. We were exhausted, and demoralized, and effectively powerless. So in 1995 we voluntarily placed Andrew into therapeutic foster care, and he has been living with the same family for thirteen years now. That was the hardest thing I have ever done in my life. If someone could have told me at the time how well that would work out, I would not have dared believe them. But in the years since, I’ve had the chance to learn indelibly that my feelings in the middle of a crisis are not a good predictor of how things will turn out. And this is true for my own life as well as the life of my child. Crises have a way of forcing reevaluations. The process is not pretty - or gentle. But looking back, I can see where our paths each had to lead through the hardest stuff to allow us to get to where we are now. Andrew’s path led him into a very structured home setting, getting effective advocacy, having a wonderful experience in the PEP, and taking several college courses since. My own path led into long-term disability leave - I have not worked since late 1993 when my autism evaluation began - and back into college in 2000 to learn about sociology - and into many opportunities to write and speak about autism, as I’m doing with you today. It takes what it takes.
Another part of the solution involves my self-awareness, and my ability to manage my own life. Learning that I am autistic, reading up on autism, meeting others like me, and getting professional support were all vital. But I have to realize that I’m still going to make mistakes, and so are the nonautistic people around me. Even with the best of intentions, people sometimes make mistakes. The goal is, to not make the same ones over and over. Holding others - or myself - to a standard of perfection, then falling apart when the reality comes up short of that, doesn’t help. For centuries, sailors used the North Star to guide their course. They knew they wouldn’t get to the North Star; that wasn’t the point. What they needed was to travel in the right direction. My goal is to keep doing the next right thing. When I don’t, I may not be real happy about it. Maybe other people aren’t real happy either. But if I look in front of me, I see another “next right thing” that I can do, so that I can get right back on the path. Perfection is not required. A good-faith effort is.
And another part: knowing that I’m likely to overreact in some situations is good information to have, but then I also need to be open to getting help with that. Learning to check with people to see if maybe I’ve misunderstood or misinterpreted something. Sometimes I’ll hear a person mention the possibility of doing something and think they’ve made an ironclad commitment to do it, only to be bitterly disappointed when it doesn’t happen. Or I will miss the importance of doing something which seems small and incidental to me but means a great deal to the person expecting me to do it. Asking about these things may seem clunky compared with just intuitively knowing them, but it’s the best workaround I’ve got. And without workarounds, I wouldn’t stand a chance.
I feel that principle extends to living with autism in general. Society seems geared toward those whose neurological functioning is somewhere in the mainstream. There are lots of ambiguities, sometimes even blatant contradictions. There seems to be this long list of dos and donts which comes with an equally long list of exceptions. They’re not printed in Greek, but they seem so hard to understand, memorize, and execute that they might as well be. Sometimes I feel like I’m in this intricate dance where someone is calling out each next step, but I’m deaf. Or following one colored path through a maze when I’m colorblind and all the paths look the same. I might be tempted to just throw up my hands and yell, “I’m autistic! What do you expect?” and stop. Well, what are the choices at times like that? Confrontation, withdrawal... or how about problem-solving? I might feel like sulking, but problem-solving is much more productive, I feel better quicker, and the same things stop happening over and over. I heard a minister once joke that these days he was as confused as ever, but on a higher level, and about more important things. I got both the humor and the truth behind it. Things like this help me to relax, and to not take myself quite so seriously. I’ve had to learn how to do both of those. It didn’t come easily.
One more example using vision as a metaphor: I know there’s stuff I have trouble even being aware of, let alone dealing with. But how can I possibly see where my own blind spots are? That’s why they’re called “blind spots”. Time for some outside help again. Then once I know I’ve got these blind spots, it’s my responsibility - and opportunity - to shift my perspective, to use a different approach, so I can see what’s going on and figure out what I need to do. Maybe a lack of one particular skill can be compensated for with a different skill. Maybe using examples from some special interest I have can help me understand other things. Sometimes, I have to learn to accept my limitations, and be okay with needing help from others with certain areas of my life. And if someone tries to make fun of me for being dependent on others, I can smile and ask them if they grow all their own food and make all their own clothes. I mean, in the fullest sense of the words, they can’t even feed themselves, and they’re trying to make fun of me?
But even with support and information and workarounds and accommodations, and even with a sense of humor, there are still times when it all gets to me. I might get overwhelmed and crash, becoming verbally unresponsive and very tactile-defensive, or very reactive to lights or sounds. I might start ticcing, as a residual side effect of medications I’ve taken over the years. I might even become distressed in the middle of lots of other people enjoying themselves, and need to get away. This doesn’t mean I’ve almost got it and all I need to do is try a little harder - it means I’m exhausted from trying as hard as I can. Sometimes I might even act out the way other people do... even though acting out once in a while isn’t written up as “regressing” when they do it.
So doing the next right thing - as hard as that may be at times - has paid off wonderfully. One of the things which has come back for me is my sense of humor. I smile and laugh a lot more in recent years than I had for a long time, and I delight in some of the things that I run across. For instance, this email arrived in my inbox a while back:
“Dear Winner
We Apologies, for the delay of your payment and all the Inconveniences and Inflict that we might have indulge you through.
However, we were having some minor problems with our payment system, which is Inexplicable, and have held us stranded and Indolent, not having the Aspiration to devote our 100% Assiduity in accrediting foreign payments.”
These good people were eager to send me nine hundred fifty thousand, two hundred and fifteen dollars. (The kindness of strangers can be heartwarming.) They sent me that offer... but what I received was a good laugh and a reminder to pay attention. See? There are lessons in everything, and it can be fun to find them. Everyday life becomes this combination of on-the-job training and treasure hunt. Some of it is very serious - every time I drive, my own actions or the actions of others could put my life at risk - but I can practice responding appropriately to whatever comes along, and learn to ignore a lot of stuff which I used to get quite upset with. Usually when folks behave badly in my vicinity it isn't really about me - they were already going to do whatever-it-was and I just happened to "wander onto the firing range". But I have also found myself helping to “set up” situations where there is conflict, and once I’ve become aware of this it’s my responsibility to do something about that pattern of behavior. A lot of stuff that “just seemed to happen to me a lot” was the result of maneuvering on my part to set the stage for it.
Autistic or not, I need to be as accountable as I can for what takes place in my life, and to do the best I can to understand and cooperate with others. And there are times when I need to cooperate even though I do not understand. It becomes a matter of trust - and, for many people, a matter of faith. Not everything in life is fair, and some systems have become so adversarial that they might as well open meetings with the bell from a boxing match. Finding a way to maintain dignity, much less composure, can be very challenging. But I can - and must - trust that there are better ways to do things, even if I cannot yet see what they are. There is a place for “survival of the fittest”, certainly. But there is also a place for compassion and mercy, and to start things moving in that direction, someone has to go first, even if there is no guarantee that others will reciprocate. Otherwise, if nothing changes, nothing changes.
But tomorrow is another day, and I’m real grateful the days come just one at a time. If I can learn to have reasonable expectations of you, and to trust that you mean well, and remember that sometimes you’ll be tired or cranky or distracted, then I won’t get mad at you nearly as often. And if you can do the same for me, then you won’t get mad at me as often either. And then we can reach out toward each other, and find ways to understand each other - and ourselves - better. It may not seem intuitive to everyone that autistic folks can participate in this process, that along with being able to learn we can also teach. Not from a position that claims that “we’re the only ones who truly understand”, and certainly not from some saintly pedestal, but as peers in a larger society which includes some folks who live, and who experience life, differently. We can raise each others’ quality of life, if we can just learn how. I’ve had some remarkable experiences, but that’s because the process itself is remarkable. There’s plenty of room for all of us - I’m just one more person walking the path and trying to learn the lessons.
Some of the lessons are painful. A Lebanese man named Kahlil Gibran wrote a book eighty-five years ago. One of the things it said was this: “Your pain is the breaking of the shell that encloses your understanding.” I think this is especially true regarding autism. As a parent, my understanding of what our lives would be like needed to be repeatedly broken, painful though that was, so that it could grow larger. My understanding of the capabilities of programs and services, and my expectations of those providing or administering them, needed to be broken so that I could accept the larger reality. As an autistic person, I had to learn that, no matter how hard I tried to do something or understand something, there would be times when I would get it wrong. And so would others. Accepting that can be hard. Forgiving others can be harder. Forgiving myself can be the hardest. But it is my responsibility - and opportunity - to do just that, so that I stay willing to keep trying, to keep learning, and to live each day as it comes. I would recommend that path to anyone. You don’t have to be autistic to get to keep growing.
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. I’m not talking about “running wild” - that would help no one - but about finding ways that we can reach accommodations with society. I think we need each other. We can’t help but bring a different perspective to the table. We can learn from each other.
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 my favorite science-fiction television series “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 drown out 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 and with whoever else cares to listen.
And so I see another “good news-bad news” situation: The bad news is that I’m not smart enough to see how everything is going to turn out, and the good news is that I don’t have to be. Autism may never be completely understood, but I can still learn - as the parent of an autistic son, and as an autistic person myself - how to deal with life on life’s terms and come to an accommodation with the world around me. There is a saying which I take some comfort in: “If our minds were so simple that we could understand them, then we would be so simple that we could not understand them.” There was a time when I could have gotten very bitter, and felt very hopeless, if I had heard that. Today, I can smile and say, “Boy, howdy!” and realize there is so much that I will never understand, and feel a sense of awe rather than despair. The Big Picture is beyond me. But that’s all right. I have a place in this world, and work to do, and good people to do it with. That’s what brought me here this evening. Well, that and dinner. So thank you all.