Thank you for inviting me back. As I did last year, I will put the text of what I say tonight on my website, which is www.davespicer.org . The site also has a bunch of other presentations I’ve given over the past ten years.
Okay, so I’m back. What can I talk about? There are a host of issues concerning autism like policy deliberations, lobbying, funding and so forth, but these things are pretty much beyond me. There are other issues I can more confidently speak to, so I’ll touch on a few of them shortly. First, a little bit about my background:
I live in West Asheville with my wife Dove. I am 60, and have a son Andrew who is 23. He was diagnosed with autism in 1993; as a result of that, I asked TEACCH to evaluate me and my own autism diagnosis came in 1994, when I was 46. It has been quite a ride, both in the years before my diagnosis and the years after. My website covers a lot of that ground for those interested.
I’m primarily a visual thinker, so lots of images come to me. These help me develop and communicate ideas, and help me understand myself. For example: has anyone here ever driven a vehicle which had been in a major wreck and had a bent frame? The sheet metal is easier to fix, so that it looks okay, but the steering gets real interesting. It loves to turn one way, fights you the other way, and you don’t dare let go of the wheel while you’re moving. Well, understanding some things comes very easily to me, other things - mostly social - are terribly hard, and the condition itself is named for self-centeredness. Maybe other folks can cruise around on automatic pilot, but I sure can’t. And it’s vital that I know that about myself, for my own well-being and for the sanity of those around me.
But I don’t experience autism as a terrible, unrelenting struggle either. The other day I heard a quote from an advertising guru named Bill Bernbach: “As soon as you become a slave to the rules, you’re doing what everybody else does. When you do what everybody else does, you don’t stand out.” And I thought to myself, “No problemo.” There is fun along with the hard work.
In the Fall of 2000, I returned to college, many years after a dreadful first experience. To my astonishment, I found that I had both a liking and an aptitude for sociology. It gave me a chance to learn how socialization works, and why people interact the way they do. This was news to me as an autistic person. I also learned that it is normal to expect, and want, typical behavior in social interactions. “Quality of life” is, itself, socially determined. Each society decides what it is, and there can be great distress when something unusual happens. It seems like this would especially apply to parents and their children.
Earlier this week I was at UNC-Asheville listening to a severely-disabled author read from her works. Her underlying theme was quality of life; this from someone who has lived much longer than she was “supposed to”, under circumstances which seem crushing on the face of them. (Her response, by the way, was to become a practicing attorney specializing in civil-rights issues.) What do I do when presented with someone who “should not be that way”? Do I deny, or at least ignore, those aspects of their reality which don’t match my understanding? If someone is doing something it must be possible to do it. And if my reality says it’s impossible, then my reality needs to change.
The only way my reality can change is if I let go of a faulty understanding of something and learn a better one. I cannot learn without being open to learning... and I cannot be open to learning if I do not respect those who could teach me. Anyone, anywhere could be a teacher for me. So respect for others is vital.
When I spoke to you last time about respect, I made an oblique reference to something that happened several years ago. Tonight I’m going to go into more detail, because it was an indelible lesson to me about actions speaking louder than words.
I had been invited to speak at a support group meeting for young people. The name of the group and what city or state it was in aren’t important here; besides, it didn’t concern autism. A basic tenet of the organization is that it is spiritual rather than religious in nature; this is reinforced several times in the readings that open every meeting. There are numerous basic principles which are spoken of freely and which make up the foundation of how individuals are helped.
At this particular meeting, a person of considerable authority had also been invited to attend. People in that position have been revered, going back many centuries. People in those kinds of positions help to hold societies together.
After the readings, the person of authority was asked to say a few words. He closed with these: “Now I know that this a spiritual, not a religious program. And I respect that. But I hope that each of you...” and he went on to proselytize for his particular religious faith.
Do you see? He spoke of respecting the foundation of the organization, yet in the next breath he overrode one of its most important principles - one that lets all kinds of people join together with the common purpose of finding and living better lives, regardless of their individual beliefs. Nothing prevents anyone in that program from believing what he believed. It’s not an “either/or” situation. By respecting the underlying principles and speaking in their common language, many different people can learn and grow together regardless of their own ideologies, and use the principles to develop and strengthen their own faith, whatever it might be. The alternative - bringing religious doctrine into meetings - could lead to some folks who have different beliefs but desperately need help saying to themselves, “Oh, I see what this is all about,” and leaving. Or staying but ceasing to listen. Or spending the entire meeting talking with their buddy next to them.
The sincerity of that person’s intentions was beyond reproach. I wouldn’t pretend to question that. But my deep concern is that the best of intentions can sometimes seriously interfere with the process of helping others. And that is where my experience at that meeting relates to autism advocacy.
I don’t know if there is anything which will arouse more passion than the well-being of children. It seems to me that we’re designed that way, for humanity’s survival. But there are times when people of differing understandings and opinions, who are equally impassioned about them, will find themselves in conflict about what to do to help our children. And it can be hard to keep any kind of emotional equilibrium at times like that. One of my own struggles is to keep from judging others’ words and actions in a way that drowns out feelings of respect toward them. If I do this with autism advocacy, I’m bound to put myself in conflict with people instead of working with them toward common goals. Going beyond that, if I am convinced that my particular viewpoint on some issue or my favorite treatment approach is more valuable or more urgent than others’, then pushing that to the front of the line by any means necessary can easily become more important to me than anything else. And the damage that does to our common welfare, by setting ourselves against each other, is something I’d rather not be part of. We need each other.
One area which I know I need to learn more about concerns quality of life. Several years ago, as part of a UNC-Asheville sociology course I was taking, I volunteered for several weeks in a classroom for severely disabled children in Buncombe County. That gave me a lot to think about regarding quality of life. Just this past Monday, I listened to the author I mentioned earlier. She gave me more to think about regarding quality of life. The question I keep coming back to is, “What matters in life? What really matters?” And as I learn more, my understanding evolves, and my view gets a little clearer, a little larger. But I cannot learn in isolation. None of us can. We need each other.
Those of us on the autism spectrum, by our very existence, have a way of forcing that question: What really matters? That may not seem like much of a gift sometimes, especially when it shows up as noncompliance or endless questioning. But forcing us to reexamine our assumptions and expectations - and I am including myself here as a person on the spectrum; it’s our responsibility too, as much as we are able - this reexamination can help us find ways of living each day which are more rewarding than we had dared hope for. Our understanding of “quality of life” can change - and grow. Society includes all of us.
In living with autism, there are always more people to meet, more lives to learn about, more experiences of joy and sorrow and determination to hear of... and to live. It seems safe to say that we are all here tonight sharing concerns about quality of life for autism-spectrum folks. In that common ground, and keeping respect for whatever differences we may have about treatment modalities, educational paths, the culture of autism, or anything else, we can learn from each other and support each other and walk the path together. May it be so. Thank you for having me.