Thank you for having me here today. The next twenty-five minutes will take us on quite a journey. Don’t worry about taking notes - this talk is already posted at www.davespicer.org along with others I’ve given. Please hold your questions till the end, although I’ll start out by asking some questions for those of you who, like me, have an autistic child: What will happen? Will things turn out all right? What will our children’s lives be like? What will our lives be like? I’ll bet some of you have asked these in the middle of the night. Well, predicting the future is beyond me. I usually have my hands full with trying to understand the present. But I can address peoples’ concerns in three ways today: by sharing my own experiences of living with autism, by showing you that things can turn out well even when that seems far too much to hope, and to remind you that none of us are alone. We have each other.
To me, the most important things about my past are that I’m basically at peace with it - everyone did the best they could with the understanding they had at the time - and I can see what’s been happening over the years, getting at least some idea of the direction I’m headed. And I like what I see. More than that, I love my life today. 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 they keep coming, and not just little stuff, but big things which keep my life expanding and feeling renewed. Instead of “good old days” to look back on, I have the experience now, at age 61, of being in the prime of my life - and having that prime move right along with me. I not only didn’t see that coming, I didn’t think anything like that was possible. The standard model is inadequate to describe what has been happening.
I was born in Connecticut in 1948, so my childhood was in the 1950s and into the ‘60s. School was okay academically but I had all these perplexing social issues. I was pretty quiet and didn’t mix with other kids a lot; when I did the results were all over the place. Sometimes I could figure out what to do and say, other times I’d wind up feeling embarrassed or humiliated. It was like I had a social learning disability. Because I scored pretty high on aptitude tests, everybody assumed that I was smart enough to know what to do, and was therefore an underachiever who just wasn’t trying hard enough. Plenty of frustration and disappointment to go around.
A lot of times, my outsides didn’t look anything like my insides. I sort of learned how to laugh at the right times, use the “right” gestures, expressions, sometimes even social behavior. But none of that made me any less autistic - instead, I sacrificed my own identity in order to gain the acceptance and approval of others. By the time I was 12 or so, 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 - I was lost. What I desperately needed was acceptance of me as I was, impairments and all, as a starting place to learn how to relate to other people and to understand and work with my own nature. But instead, I found validation and acceptance only in behaving "correctly”. I was expected to be "okay", so that’s how I said things were, regardless of the cost. And I tried to make sense of the world around me by listening to what people told me and turning it into “ground rules”.
So "there is nothing wrong with me" became "Don't ask for help, because I'm not supposed to need any."
“All I need to do is to try harder" became "It must be as hard for everybody else as it is for me, so I should never complain about anything and just bear it in silence."
“If I really wanted to change, I could" turned into "I don’t want my life, or the lives of those around me, to be any better." So I was deliberately making the people around me upset and angry, with no understanding as to why.
As a child, I felt that using a range of tone of voice and facial expressions was emotional manipulation and therefore unfair. So I had to compete with others’ faces and voices using emotion-free reason - the facts of the matter should be sufficient to demonstrate what I needed. I sure didn’t understand how typical socialization was supposed to work, because so many things kept going wrong. I couldn’t figure out what was true and what was not, so instead I 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 over and over - thinking things were okay, and suddenly being told they were not, due to something I had done hours or days earlier. My understanding of the world would then collapse, and I would fall apart emotionally.
So my situation was this: 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 relatively “mild” hurricanes can still cause enormous damage.
Well, in due course I graduated from high school and went off to college. 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. 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, as I spent decades of my life trying desperately to be who I was supposed to be instead of who I was.
Now 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. The same things kept happening over and over, and I saw no way those patterns could ever change either. So the fifteen years following college contained one brief, unhappy marriage, 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. Things finally did begin 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. 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.
Fast-forward several years: our son was struggling in school for behavioral reasons. Phone calls to pick him up, suspensions, conferences, and so on. We saw 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 was such that I haven’t worked since.
Okay. 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, right? Well, the rest of my talk will be about that process, what it has taught me, and what it continues to teach me.
Age 46 is not the optimal time to have a developmental condition identified that was with me all along. But now, there were professionals who understood. What I had been struggling with basically all my life was real. On top of that, there were other people like me. I was not the only one. I finally felt like I belonged somewhere. That was the start. In late 1995 I became involved with an Internet community of autistic folks. I read a couple of the books written by autism-spectrum folks. The following year, I went to a conference put on by and for autistic people. (They happen every year now.) Then in early 1998 I was invited to present at an Asperger Syndrome conference in Sweden.
By the Fall of 2000, things got interesting in another way. After 32 years, 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. I loved the subject material. Amazingly, nearly all of the courses I was taking - and earning A’s in - were sociology. You wouldn’t figure an autistic person would like, and do well in, sociology. But these courses taught how humans interact and function in societies. They also taught why they interact as they do, so I could learn what people do and why they do it, instead of just blindly and clumsily imitating. Social situations became settings to study and learn from. The textbooks in one course implied that autistic folks might not meet the theoretical criteria for being human. I took on that notion, turning it into an undergraduate research project.
Folks, these are interesting times 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 need to do so, both for ourselves and for our brothers and sisters on the spectrum who cannot. Our voices matter, and for our own well-being, we need to be listened to. Advocates can help us to be heard, but they cannot replace our own voices.
After several semesters at UNC-Asheville I stopped. I had accomplished what I set out to do. Since then, I have serving the autism community in various ways like speaking here today.
Right along with this - and making everything else possible - I have continued in the daily process of substance abuse recovery, which helps me mentally, physically, emotionally, and spiritually. I am learning to take better care of myself.
So. 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. Present-day life brings its own challenges, for instance, with communication.
Some autistic folks can multiply large numbers; I construct large sentences. It sometimes happens that this skill is useful in expressing certain ideas. But that doesn’t mean I’m “just like everyone else”. If people tell me they would have no idea I am autistic, it is because they are seeing a carefully-constructed interface layer, not me. I mask much of my differentness for the convenience of those around me. That’s a lot of work that most people aren’t aware of at all. So a person 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. No one would say that, because a person in a wheelchair made it up a ramp, that ramp could now be taken out. It just doesn’t work that way. It’s awfully easy to assume that the process of verbal communication is all one piece; that the ideas go in one end and all these words come out the other. But the more emotionally stressed I am, the less able I am to communicate. The times when I need the most help are the times I am least able to ask for it. This has led folks with good intentions 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.
Nonautistic people sometimes point to an autistic behavior and say, "but I do that too.” 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. Anyone can parrot another’s words back to them, but echolalia isn’t a choice. And 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.
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."
Sometimes we more-articulate autistic individuals are told that we have no understanding of other autistic people - that we are somehow different from them. 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. 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. It’s a user interface for the convenience of others.
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 I may never be able to socially “act my age”. But I see it as one of those "good news - bad news" situations. The bad news is that I have to work on it the rest of my life... and the good news is that I get to work on it the rest of my life. This doesn’t seem like magic to me - just good common sense.
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. Because lots of things that are easy for others are hard for us, the opportunities to take on difficult tasks, give them our best effort, and feel good about ourselves, are all around us. All we need to do is open our eyes in the morning, and see what presents itself.
Getting here has not been easy. As the parent of an autism-spectrum kid, I had to let go of all the ideas I had about how things would work out. I had to become willing to do whatever it took - to go to any length. In my case, this meant letting go of raising my own child. Some aspects of his school experience were going very badly, and we were ineffective in dealing with it. 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. He has been living with the same family for thirteen years, and they now live in northern Maine. That was the hardest thing I have ever done in my life. If someone had told me at the time how well that would work out, I wouldn’t have dared believe them. But now I’ve learned that my feelings in the middle of a crisis are not a good predictor of how things will turn out. Crises have a way of forcing reevaluations. The process is not pretty - or gentle. 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 Buncombe County’s Progressive Education Program, and taking several college courses since. My own path led into long-term disability leave, back into college, and now into many opportunities to write and speak about autism, like I’m doing right now. It takes what it takes.
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, even with good intentions, and so are the nonautistic people around me. 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 there is another “next right thing” right in front of me, so I can get back on the path. Perfection is not required. A good-faith effort is.
I’m likely to overreact in some situations, and need to check with people to see if maybe I’ve misunderstood something. Checking my assumptions and expectations is vital. Otherwise, without social intuition, I wouldn’t stand a chance.
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, I have to - and get to - shift my perspective or use a different approach, so I can see what’s going on and figure out what I need to do. I also have to learn to accept my limitations, and be okay with needing help from others with certain areas of my life. Social understanding is certainly one of those areas. I might get real frustrated when things go wrong and feel like sulking, but problem-solving is much more productive, I feel better quicker, and the same things stop happening over and over.
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 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... although it isn’t written up as “regressing” when they do it.
But I’ve found 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. 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 they were already going to do whatever it was and I just happened to "wander onto the firing range". But I have also seen that 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. I need to own that - to own my whole life, really. Autistic or not, I need to be as accountable as I can for my share in what takes place, 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, and to cut others some slack. To start things moving in that direction, someone has to go first, even if there is no guarantee that others will follow. 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 have reasonable expectations of you, and 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 maybe you can do the same for me. And then we can reach out toward each other, and find ways to understand each other - and ourselves - better. We autistic folks can be part of this, and along with being able to learn we can also teach. Not by proclaiming 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’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. Likewise for my understanding of the capabilities of programs and services, and my expectations of those providing or administering them. 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 I have to - and get to - do just that, so that I stay willing to keep trying, and learning, and living each day as it comes. And you don’t have to be autistic to get to keep growing.
It may seem like stretching things to suggest that an autistic life can be an Epic Adventure. But in all this hard work, in facing challenges most people cannot see and may know nothing about, I find a sense of purpose. 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 adventure with whoever cares to listen.
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 hopeless if I had heard that. Today, I can smile 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 today. So thank you all.