Thank you for inviting me to your conference. As a preface, I want you to know that this address will be posted later today at www.davespicer.org so there's no need to take a lot of notes. And rather than trying to answer questions at the end, we'll be collecting them in written form and responding a little later on the website (at the bottom of this page). This talk probably won't last the full thirty minutes, so you'll have a little time afterward to think about what you've heard and jot down any questions. Instead of transcribing like mad, then, and worrying about what issues might not get addressed, I would encourage you to relax and consider some possibilities... and notice how you feel about them. If I can leave you with a sense of hope, and a greater sense of connectedness to one another, that seems fully as important as any particular words I say. (To help this happen, though, please make sure your cel phones are muted.)
I understand that speakers customarily begin with at least an attempt at humor, so let me offer you my favorite joke: it's short, clean (a precious commodity these days), and useful in encouraging - no, demanding - a different way of looking at things. So:
The purpose of that joke is to get listeners to think, "*Wait* a minute!" To disrupt the flow of their understanding. I grew up in the 1960s and still carry a little bit of subversiveness in me - from time to time I let it out to play.
Now, I'll start the address proper by describing my vantage point: I am 59 years old, and was diagnosed with autism when I was 46. My son Andrew is 22, and his autism diagnosis at age 8 led to mine. I am familiar with the struggles of parenting a special-needs child, and I know the lengths we sometimes must go for the welfare of our children. The challenge of meeting Andrew's needs led to his placement into therapeutic foster care at age 10, and he has lived with his "extended family" ever since. He is doing wonderfully - better than I would have dared hope when things were the hardest. The path his life has taken was exactly what he needed to prosper.
My own life has included decades of not understanding and not being understood, and of doggedly persisting at what didn't work because it was all I knew. This began changing in the early 1980s and picked up speed in the mid-1990s, and two of the conference presentations at davespicer.org narrate that journey. In the Fall of 2000 I began taking one or two courses a semester at UNC-Asheville, and did this for five years. To my great surprise, I found an interest and aptitude for sociology, which is about the last thing one would expect an autistic person to take to. But through that experience, I learned quite a lot about how individuals construct their identities and sense of reality, and how people interact and socialize. This helped me to better understand society and to better understand myself. It led me to pursue a research project on autism and its challenges to sociological theory. This project is still underway, and I am still learning in my everyday life. And so the path *my* life has taken was exactly what I needed to prosper.
I'm not here today to lecture you all on what I think you should and shouldn't do in your professions. It would be presumptuous - perhaps even arrogant - of me to do so. More importantly, though, it would short-circuit the process of experiential learning which invites each of you to use her or his own abilities and challenges to find the best path to walk with each student. So instead of presenting a list of recommendations and an implementation plan, I'd like to share some of my thoughts regarding education and see what use they might be.
The first thing that comes to mind is the very terminology we use in describing the goals and process of education. Just as adaptations in methods and settings are sometimes needed, we may need to adapt the terms and concepts we use in talking about what we're focusing on today. Let me list a few of these, and then we can explore how to use them as tools to help us along. The first is the nature of understanding and being understood, next is the pervasiveness of assumptions & expectations, next is socialization, and the last is quality-of-life.
In bringing these up as needing reexamination, I'm not trying to shake the ground under you - or, literally, to remove your understanding. Rather than giving you less to stand on, I seek to encourage freedom of movement... at various times in my life, what I was doing simply was not working, and my understanding *had* to change to get me unstuck. Here, just as in the physical world, changing my point of view will reveal more about what I'm looking at, which will then help me to better engage it.
1. Understanding is something that is often taken for granted. We convey ideas and information in the manner we're accustomed to, anticipating that they will "get across" to the recipient, who will then respond with signals of acknowlegement or requests for clarification. Through this process, they will come to literally "know what we are talking about". But this presumes fluency in some common language - expressive on our part, receptive on theirs. Yet language is more than the words we both use: one episode of "Star Trek: Next Generation" (Well, I *am* on the autism spectrum!) involved contact with a people who expressed themselves entirely by metaphor. The folks on the Enterprise were baffled until they remembered that the meaning of words can change greatly depending on how they are used. These people were using a language whose conceptual vocabulary consisted of references to stories which they, but not the Enterprise crew, were familiar with. Of course the crew couldn't understand! But once they became aware of what was happening, they could do something about it.
2. This leads us into the pervasiveness - and the hazards - of assumptions and expectations. Once we start deliberately looking for these, we find them everywhere. We could think of them as the connective tissue of social interaction; they hold things together. Our sense of reality is sustained by them. Notice I said, "*our* sense or reality", not Reality with a capital R. It's awfully easy to say, "Well, *everybody* knows these things. That's just how things are." As if our understanding is the only one there is... or at least the only *right* one there is. And so we might say one or more of these three things: "I've asked you a thousand times to look at me while I'm speaking to you!" Or, "I can't explain this any more simply - just try harder and you'll understand it." Or, "Just relax and play with the others - don't be so uptight. Just try it - you'll like it!"
The first of these examples concerns attention: eye contact indicates attention and lack of it means lack of attention. Everybody knows that. But we autistic folks may not have that "rule" hard-wired into us. It can be harder for me to listen to a person and understand them if I have to maintain eye contact, because nonverbal cues can be very hard for me to decipher. And I do mean "decipher" , not "interpret": there are enough subtleties in nonverbal communication that without an intuitive sense of how to interpret them, they might as well be in some kind of code. On top of this, the exaggeration of "a thousand times" is upsetting: why are they saying something that isn't literally true? Why are they bending reality with exaggerations? They're toying with me!
The second example concerns learning style: try hard enough, and you can understand the explanation. But those of us who are visual thinkers have a much easier time grasping concepts when we can *see* them instead of just hearing them. Depending on one's cognitive makeup, urging someone to "try harder" at verbal understanding could be like directing a color-blind person to "try harder" to differentiate colors which look the same to them, when what they need is some alternative means of understanding what the different colors signify.
The third concerns socialization: we know what informal interaction "should" look and sound like: casual, spontaneous play, or sitting around making "small talk". These are things everyone enjoys. Everyone should get to do them. Everyone should know how to do them. Everyone should be made to learn them. See the slippery slope? For some of us, structure and predictability are very important, and unstructured spontaneity can be frightening. Trying to understand what is happening - and continually monitoring the fluidity of typical socializing so we can keep updating our understanding - well, that can be grueling and exhausting, something to be endured rather than enjoyed. It is much easier and understandable if things are more formal. And so we may behave formally in situations where that seems very out-of-place, because the alternative, which other people would find more relaxing, is much likelier to be anxiety-provoking for us. I find comfort knowing there is structure, as long as that structure is workable.
3. Now, let's take a broader look at socialization: consider that for various reasons the "standard model" of socialization may not be attainable for everyone. So we face a choice: do we spend a lot of our time and energy lamenting what is absent, or do we open ourselves to other possibilities? Socializing involves interfacing. But who says the standard interface is the only one we can use, or the only one that's any good? A recent CNN piece featured a so-called "low-functioning" autistic woman named Amanda Baggs, who despite being nonverbal and having many autistic behavioral hallmarks is highly articulate and maintains an online presence in the virtual environment called "Second Life".
At this point, we may find ourselves needing to back up: instead of starting with, "How can people interact?" the starting point might better be, "What *is* a person?" In one of my sociology courses, I got the distinct impression from my textbooks that autistic people might not exactly possess the attributes that were put forth as characterizing a "human". (This, by the way, was what got my research project started.) I'm not suggesting that we run around deconstructing everything, because that can get so philosophical that we wind up sitting there contemplating our navels, and all mine tells me is that I need more exercise. But my point is that in stating our goals we may use terminology so highly-constructed that most of the decisions are already made, and thus we unwittingly prune away unorthodox approaches which might prove very useful. And I think "unorthodox" is exactly the right word here: something which challenges the orthodoxy - the canon of belief about How Things Should Be Done - can provoke skepticism, backlash, political repercussions... and a lot of self-doubt: how can we be sure we're doing the right thing?
It's worth reminding ourselves that socialization is increasingly taking place online, which could well expand the options avaiable for "inclusion" and peer contact. In the "Second Life" virtual community, Amanda Baggs is doing just that. And if some us need instruction in "remedial socialization" in real life, then so be it. I mentioned earlier that I found an interest in sociology, and that the courses I took helped me understand how society works. This suggests some possibilities: could there be school sociologists as well as school psychologists, allowing the binocular vision of those two fields to provide insight and guidance which neither could by itself? Could sociology instruction be made available for special-circumstance students who otherwise might have difficulty understanding the "how" and "why" of social interaction even if they're aware of the "what"? To me, social learning disabilities seem as real as any other kind, and could well be just as amenable to accommodation. My own social adaptations involve constructing an interface for each situation. Some are temporary for one-time interactions, while others are more durable for settings I encounter frequently. The one with my wife Kim is the most-used, and the most important to my daily well-being. If I was somehow airlifted into mainstream society, I wouldn't know what to do. But with a bridge, I am free to explore, knowing that I have a return path to my solitude when I need it.
4. Going beyond societal issues, some of the questions get pretty interesting outside the *neurological* orthodoxy, too: who are we? Are we "regular people" trapped inside the prisons of our various conditions? Shouldn't we be liberated or cured or something? Who could possibly *want* to be separate from the mainstream? What kind of quality-of-life could anyone have out there?
Well, in a nod to some of my autistic brothers and sisters who speak mainly in tv-show dialog, let me refer you to a certain movie scene from nearly forty years ago. Has anyone here seen "Charly", or read "Flowers For Algernon", the story it was based on? It concerned a childlike man with serious mental retardation whose cognitive functioning was vastly enhanced through an experimental procedure. As a result, he saw the larger world around him for the first time. He was soon presented to the scientific community at a conference. In a scene which I can only describe as electrifying, he was asked what he saw. Calling his answer acerbic does not do it justice: it was an indictment, a bleak litany of the ways the richness of life had been trivialized and corrupted. There sure wasn't much quality-of-life in what he described. His childlike innocence had been abruptly taken from him, and he was very angry.
Now let me complement that example with another: has anyone seen the movie "The Peaceful Warrior"? It came out in limited release last year, and is opening nationwide at the end of March. In very general terms, it involves a self-absorbed young athlete who comes to see the world around him more clearly, with a profound impact on his quality-of-life. Many have found the movie inspirational, and I sure wouldn't quarrel with that description.
These examples show two different experiences of learning: one person's vision is enlarged into the mainstream, and the other's is enlarged beyond it. So why can't one's vision - one's life experience - be enhanced without being in the mainstream at all? Why does a life have to look like most others' lives to be considered fulfilling or rewarding? After many years of concern about how my life would turn out, my parents finally reached the conclusion that the most important thing to them was that I be happy. For a long time that was not the case for me. Yet my life now is meaningful and productive in ways I could not have dreamed of. A cursory external description of my circumstances - longterm disability after a very uneven twenty-five year work experience, didn't graduate from college, two unsuccessful marriages, unable to successfully raise my special-needs son, and other issues - would lead to precisely the wrong conclusions about what my quality-of-life must be like. The standard model is not the only choice, and being unable to follow a conventional path does not mean that success is impossible, although it might take a lot more effort to achieve.
Let me say here that I know the mainstream isn't an uncaring monolith. When some autistic folks use another Star Trek reference and speak of resisting assimilation by the Borg, there is at least *some* humor intended. There are certainly many positive aspects of mainstream life and mainstream society, and I do treasure the affirmation of hope known as the Desiderata, but the mainstream isn't the only place quality-of-life can be found. During the years I've been involved with the online autism community, this issue has generated a lot of passionate - sometimes heated - discussion. A good number of parents of autistic children have as their goal the emergence or reappearance of the more-typical child they are convinced is behind or inside the "barrier of autism", as they see it. On the other hand, a good number of autistic adults online are not only at peace with their neurological makeup but treasure it for the insights and perspectives it provides them. They feel that it forms a core part of their very identity, and that disguising it with the learned (or trained) appearance of typicality would leave them out of touch with their true selves. Each of these groups sees the other as threatening something they value very highly. Of course there is conflict between views this polarized.
In my closing address at the 2005 conference of the Autism Society of North Carolina (which is also on my website), I suggested a way to bridge this gap. I don't know how useful it might be in other circumstances, but I feel it's worth mentioning here as an example. What I suggested in my address was that autism itself be defined in terms of neurological configuration and functioning, and that serious behavioral aspects - some of which can be very distressing - be considered major side effects of autism. With this perspective, autistic adults need not feel their sense of identity is being disregarded, and parents need not feel their struggles or their children's struggles are being discounted. Since no one wants yucky side effects, both groups can work together on addressing them instead of being in conflict.
More recently, I have suggested that social adaptation could be understood by autistic folks as a costume rather than a disguise: you can dress up for some occasion when it's called for, but you're still yourself, and people can tell who you are, and you can take the costume back off afterward. It doesn't have to be a permanent disguise where you must constantly pretend to be somebody you're not.
I haven't gotten any feedback yet on whether these ideas have been tried or how they've turned out. But they seem worth a try, and I mention them here as examples of unconventional approaches which might bear fruit where others had not.
In closing, I'd like to describe an experience I had one semester at UNCA: one of my anthropology courses required some field work. My choice was to volunteer in a classroom at Buncombe County's Progressive Education Program, where my son was also enrolled in another section. Now I have had some experience with special-needs and special-circumstance people: I am autistic, and would be a special-needs kid if I were a child today. My son is also autistic. A longtime friend and former coworker of mine is congenitally blind. Another friend lived with a degenerative neuromuscular condition for years until it prematurely ended his life. Other friends and acquaintances include people with mental retardation and with mental illness. Some of these folks are content and doing well with their circumstances, while others wish desperately for the troubling condition to be removed. I also have a good many friends who, like me, are in substance abuse recovery. So I know what it's like to deal with challenges. But none of this prepared me for what I experienced in that classroom.
There were six kids in the class, ranging from ages from 6 to 9. None were verbal, none could write, none appeared to use signing. At least two had to be fed through stomach tubes. One of the kids was ambulatory; I don't recall clearly but one or two others might also have been. Yet there was group participation, there was communication with adaptive devices, and I went with the class to a school assembly and on a field trip to a children's theater.
It took me a long time to realize that what was being taught was connectedness, and the most-reinforced experience for these children was the experience of being loved. So for those kids, this is how the world works: people come and meet them where they are, and then everyone jointly *creates* a suitable reality. Extending this concept leads to inclusion in its greater sense: that of bringing everyone to a higher level of understanding, not getting some kids to where the other kids already are. Everyone learns, everyone grows - kids and adults alike - and everyone's life is enriched. I didn't understand everything I saw in that class, and I didn't understand everything I felt. But the strongest lasting impression I came away with is a sense of sacredness. Who could ask for more than that in their lives?
The opportunities and responsibilities for creating and nurturing such experiences are everywhere around us, once we learn to look for them. My sense is that this is a large part of what you folks do. I am deeply grateful for the chance you have given me to join with you for this time. Thank you all.