Thank you for inviting me here today. Let me first say that this talk will be posted to www.davespicer.org later today, so don't worry about needing to write anything down. We have a diverse group, so I'll start by speaking first to one part of it, then the other.
To the nonautistic folks here - the neurologically typical ones, that is - I say this:
Thank you for being here. There is a group of people we're concerned about. They're hard to understand. They think the oddest things are important. And they get so upset when things don't go the way they want. What do we do with these people? There are so many of them... and more and more show up all the time. What will their lives be like - and what will our lives be like? Will their dreams come true? Will ours? There's so much we don't know...
And to the autistic folks here - the neurologically interesting ones, that is - I say this:
Thank you for being here. There is a group of people we're concerned about. They're hard to understand. They think the oddest things are important. And they get so upset when things don't go the way they want. What do we do with these people? There are so many of them... and more and more show up all the time. What will their lives be like - and what will our lives be like? Will their dreams come true? Will ours? There's so much we don't know...
I'm not saying these things just to be cute. Describing the situation this way sounds funny on the surface, but beneath that there is an awful lot of frustration, misunderstanding, and concern regarding autism. As the parent of an autistic son, and as an autistic person myself, I am no stranger to these feelings. When things aren't going well, it can seem like, however hard we try, nothing changes. Our best efforts often fall short. We go from dealing with a series of problems to facing a full-scale crisis. There must be something we can do, and at least there are plenty of different opinions about what that should be. But how do we know if we're doing the right thing?
I think a good place to start is by asking, "What do we want?" Here's why I say this: after decades of seeing me struggle and seeing so many hopes unrealized, my parents saw that what they really wanted was for me to be happy. That was all. It came down to quality of life.
Now that phrase means different things to different people, depending on whom you ask. In thinking about what it means to me, I've discovered a lot of assumptions and expectations that I didn't even realize I had. And they were taking me a surprising distance down certain paths, certain ways of looking at things, even if those ways didn't work very well. They were making it quite hard for me to see other points of view, and other possibilities. In my own case, my view of things was helping to keep me stuck in a place where I didn't understand how the world worked, they didn't understand me, and I didn't understand myself. I wasn't lost - I was right where I'd been living all my life - but I was severely disoriented, and it looked like that could never change. I sure wanted quality of life, but I sure didn't have it.
A few minutes ago I mentioned my son Andrew. After several years of his mom and I seeing Andrew struggle, and having struggles of our own trying to find effective help, our path led to the TEACCH Center over in Asheville, where he was diagnosed with autism at age 8. What I learned about autism sounded so familiar that I requested an evaluation for myself, and was diagnosed with autism in early 1994 at age 46. From that point on, my life finally began to make some sense, and many years of asking why things were so hard and went so badly gave way to realizing, "Well, of course that's what happened! How could it have been any different?"
Along with this growing awareness came a choice: what do I do now? Should I mourn the time that was lost? That didn't seem like it would get me anywhere. Should I try even harder to "fit in", to be some person or other that everyone seemed to want me to be? Well, I'd been doing *that* for decades, and no one including me was anywhere near satisfied with the results. So what was I to do?
In late 1995 I went online for the first time... and was soon guided to autistic self-advocates who spoke of living with autism and seeking quality of life *as* autistic people. This was a radical notion to me: "You mean I'm okay the way I am? I haven't been deliberately fouling up my life by refusing to conform? I really *am* different from most other people?" Finally, I had found a view of things that made sense to me.
Coming to this understanding left me with breathtaking opportunities - to be myself in a way that worked, and to find meaning and purpose in my life - and also left me with breathtaking challenges: How do I learn all that stuff? Where are the others like me, so that I will not feel like a stranger surrounded by people who are not like me? Where are those who could teach and guide me? Can I hope to find mentors? Dare I hope to find elders?
If we pause here for a moment and look around, you might observe that we're nowhere near the traditional view of autism as a terrible affliction that robs individuals and families of quality of life; a kind of plague which must be eradicated. That is not to say that living with autism is easy. It is most emphatically *not* easy. It takes everything we have in terms of energy and patience and commitment, and forces us to learn and grow in ways we might not have thought possible. It demands that we seek help and support and understanding, because without these things life can become unbearably difficult and appear hopeless... and every so often we hear about some tragedy where loss of hope led to loss of life. No one here wants that.
But what do we do with the conflict between the view of autism as an enemy of quality of life and the view of autism as an opportunity for learning and growth and perhaps even transformation? How can these be reconciled so we do not spend our precious time and energy arguing with each other about what to do instead of finding ways to work together? Well, my own experience is that I do not always understand as much as I think I understand, and that seems the best place for me to start working on change. Because even with the best of intentions, my misunderstandings can get in the way. I might not be able to actually see things from the other person's point of view, even though I think I do. Or I might not realize the history and importance of some custom or tradition, and overrule it with something I am convinced is more important. It is easy for me to say that I respect something. But it is only when I have honored its reason for being that I realize what true respect is.
One means of reconciling these differing views is something I've talked about in other addresses I've given (and those are also on my website). It is a way of looking at autism that helps me to better acknowledge the struggles and goals of parents and professionals while still honoring the natures of my autistic brothers and sisters, in the larger sense of those words.
Suppose autism is seen as a particular type of neurological arrangement, one which can result in great difficulties in some areas of functioning and perhaps in great abilities in certain other areas. While there is sometimes a tendency to romanticize autism as this mysterious and magical mode of existence, that aspect is far from the whole picture, because along with these varying abilities come a number of behavioral side effects which can range from mild and harmless to severe, damaging, sometimes even dangerous. Now since no one likes serious side effects, maybe autistic and nonautistic people can work together in finding ways to understand and mitigate them, and thereby improve quality of life for a great many people, without worrying about who's trying to "cure" whom or which philosophy of autism is the "right" one. This might also help in addressing the particular difficulties faced by those with mental retardation in addition to autism, since fewer cognitive "workarounds" may be available to that segment of the autistic population. Even the hypertechnical, sometimes oblique language which [raising hand] some of us use at times has a better chance of expressing needs and frustrations, and of being understood, than more-limited language or none at all.
My own path led me back onto a college campus after a 32-year absence. It led me, over a five year period, to take a number of sociology and anthropology courses, which to my initial surprise I both did well at and enjoyed. So it wasn't until I was in my 50s that I finally found what I'm really good at, and saw how I can best serve others. Taking these courses did not make me a sociology guru or give me the authority to set policy or tell others what to do. But what I did come away with was a sense of conviction that we autistic people are a resource - that we have something to bring to the table, whether it is our alternative viewpoints and creative vision or the forcing of learning and growth onto our caregivers. It seems both inaccurate and short-sighted to view us solely as a liability when considering our needs for accommodations and services. Now right along with this, we autistic people also have the responsibility of learning as best we can how to interface with society and get along with other people, even if we don't understand or agree with every last thing they do or say. There's plenty of work for us to do too - it isn't fair to just sit back or jump up and down demanding that everyone else do things our way and cater to us 24/7. There are a lot more of them than there are of us, they keep a lot of things going that we need, and they have their own needs too.
For us to do this work, though, we need to be able to learn from each other. I don't feel it is too strong a statement to say that some of us, at least, are trying to become a people - not "people", "*a* people." We feel a connection with each other, and have begun to experience the satisfaction - sometimes the joy - of helping each other to learn and grow, and we are developing a body of understanding and wisdom. But if we are kept apart from each other, and if all of our differentness is suppressed or extinguished, and all of us are urged, instructed, and trained to be indistinguishable from those around us, what can be learned or taught or passed on among us about the best way to deal with life as we experience it? About what works for us, and gives us something to be proud of? Thus in my view, and in the view of a number of other autistic folks I know, it is very important to preserve our identities as autistic people. I realize this places the discussion in a cultural context, and that, to put it mildly, not everyone agrees with this view. To some it may seem heresey. But it is what I believe. And even with my limited, culturally-biased, outsider's perspective of what happens when a culture is nearly destroyed in the name of ['quote marks' gesture] "helping" its people... I do not want this to happen. The damage, in terms of what is lost or never comes to pass, and especially the long-term consequences to the people... there has been far too much of that already. Many in this place understand that more deeply than I ever will.
I do not know what will happen here today. I do not know what might result in terms of understanding, cooperation, policy, legislation... sometimes I don't even know what it *is* that I don't know. But what *I* know is not that important. It is you folks who are here every day, and who will continue to do your day-by-day best to deal with the many challenges you face in raising your families and your service to society. For this you have my admiration - and my deep gratitude. Thank you all.