Thank you for having me here today. I’m going to risk raising some eyebrows by starting out asking for a show of hands: how many of you like Chinese food? I’m quite serious. You’ll understand why I’m asking this in a moment.
The reason I did that is because Chinese food typically includes fortune cookies, and while many of the sayings in them are pretty lame, some can be quite thought-provoking. And I ran across one saying a while ago - it wasn’t actually in a fortune cookie, but it sure could’ve been. It went like this:
“Starving man wait long time for roast duck to fly into mouth.”
That sentence is the best summary of the need for advocacy that I have ever heard, and everything else I’ll say here today falls under it, in one way or another. By the way, this talk will be posted at my website, which is www.davespicer.org, for those interested. There are also a number of other presentations there which I’ve given over the past twelve years.
Most people would agree that “quality of life” is a pretty basic human need. However it’s defined in a particular setting, when that need goes unmet, the consequences can be severe, whether we’re talking about individuals or entire societies. My life has to mean something, or I will indeed be “starving” - and in fact I spent many years doing just that, having little understanding of how the world worked and almost no understanding of myself at all. Today I view self-understanding as both a basic right and a basic responsibility, so that I can find and fulfill my part in society, in the larger world.
For some of us, gaining that self-understanding is very hard work. The process may not even start until we’re already supposedly adults who are expected to know what to do, be able to handle every situation, and be brimming with self-confidence, at least on the outside. My own experience was quite the opposite of that, and I’ll take a few minutes to describe what things were like and what they’re like now, to show you the difference that understanding and support can make. I am taking this approach to speaking about advocacy because the most meaningful thing I can offer you all is what I have learned about how to live as an autistic person. There are many good folks who can give valuable guidance on the specifics of how to get, and make use of, the attention and resources of individuals and entities on someone’s behalf. My own contribution today will be to point out the shared responsibilities of everyone involved in the process, including the person or group that the advocacy is for. This is an important facet of it, and my hope is that by illuminating that facet I can be of some service to everyone here. In the initial correspondence inviting me to speak today, it was stated that “We are anticipating a diverse audience of consumers, families, physicians, nurses, pharmacists, allied, public, and mental health professionals. We hope that each participant will take from your presentation information that is relevant to their practice.” I don’t think I actually swallowed hard when I read that, but I’m sure I thought to myself, “How on Earth will I be able to do that?” Well, I think - and hope - that I found a way. Let’s start with a little of my history.
I was born in Connecticut in 1948, and attended the regular school system from kindergarten through high school without any special services to speak of. Everyone - my teachers, my parents, other kids, and myself - knew that there was something going on with me, but no one knew what. Although fairly successful academically, I had all these perplexing social issues. I was pretty quiet and didn’t mix with other kids a lot; when I did try to 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 I was smart enough to know what to do, so when things went wrong that just meant I was an underachiever who wasn’t trying hard enough. There was plenty of frustration and disappointment to go around.
It got to the point where I just felt lost, with no idea who I was or what I was supposed to be doing. The hardest questions anyone could have asked me were, “What do you need?” and “What do you want?” I could find no words to answer with, and if pressed all I could do was cry, well up into the ages where boys weren’t supposed to do that. It didn’t matter that I had a large and precise vocabulary and could sound quite adultlike a lot of the time. In fact, that worked against me, because people assumed that if I sounded like an adult I must be able to think like one. They made assumptions and set their expectations accordingly, and I learned to think of myself - and to define myself - in terms of the disappointment and frustration of those around me.
So I couldn’t advocate for myself, because I didn’t know who I was or what I needed. Others could not advocate for me, because they had no more understanding of me than I had of myself. All that existed at the time (the mid-1950s to the mid-1960s) was the standard model, the standard path, so that was what I was expected to follow.
When it came time for me to go to college, I found myself in a small town in upstate New York, hundreds of miles from home. Three of the major life activities were going to classes, socializing with the others in the dorm and dating. Classes were tolerable at first, but I was basically clueless in the other two areas so I turned to the fourth major life activity up there and 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 which were decades from being identified, was essentially frozen in place. I stopped growing.
Meanwhile the classes were getting harder and harder, consisting more and more of abstractions expressed on blackboards in mathematical symbols. As I learned much later, I am primarily a visual thinker, so that meant the material became unaccountably harder and harder to grasp, regardless of the effort I made. My grades, initially Bs and Cs, became Cs and Ds, then more and more Fs as discouragement set in. Drinking became self-medication for all the stuff in my life that wasn’t working, but it wasn’t working either, because within a matter of weeks - not years or months, weeks - it had gotten out of control as well. By this time I desperately needed help, but had been so conditioned to “be okay” that I refused it. Let me point out here that many would call my autism “mild”. I would remind you all that so-called “mild” hurricanes can still cause enormous damage.
After leaving college without graduating, I somehow was hired as a telephone company engineer, then transferred into computer programming. Years of uneven job performance, primarily due to social issues, led me to eventually relocate to North Carolina in 1981 to try a fresh start. By that time I had been in one brief, unhappy marriage and several years of a struggling second one. We soon found that the “geographical cure” hadn’t worked, and were more isolated and miserable than ever. At my wife’s urging I finally sought help for alcoholism in mid-1983 and began the long process of learning to care for myself. Things improved enough that we had a son in early 1985. But several years later, we found ourselves struggling again, this time with his social issues at school. Nothing seemed to help. Finally, someone suggested we have him evaluated for autism, and he was diagnosed by TEACCH in mid-1993. Based on what I saw and learned during that process, I requested an evaluation for myself, and my autism diagnosis followed in early 1994, at age 46. The cumulative effect of everything that had happened over the years was such that I haven’t worked since.
It’s fair to wonder why I’ve told you all this, describing a childhood from fifty years ago and leading up to a diagnosis sixteen years ago. Yes, it might be an unfortunate tale, but what is the relevance to today?
Let me suggest two reasons it’s relevant. First, I trust that I do not look, sound or act particularly miserable standing before you here. That’s because something’s been happening which has changed the course, the trajectory of my life - the most accurate way I can put it is that my life has been transformed, and that was with a starting point at age 35 and a second major awakening at 46. So if anyone is feeling that it is “too late” for their autistic child, or adolescent, or young adult, or older adult... that may not be the case. Much more in my life has changed than I ever thought or believed could change, and without the support and advocacy of organizations such as TEACCH and the Autism Society of North Carolina that could never have happened. So do not give up hope... and if things do seem hopeless, it’s okay to reclaim some.
The second reason I’ve subjected you all to this condensed version of my life story is that I can’t possibly be the only developmentally-disabled person who tried to self-medicate with alcohol (and a couple of other things). My sense is that the substance-abuse risk among autistic folks, particularly those of us whose condition is misleadingly considered “mild” or those not yet identified, may be much higher than most people realize. This represents both a major peril and a major opportunity, because I have found that the support and guidance available in substance-abuse recovery gives me much more than a means to stay away from that first drink a day at a time. It gives me a structure to build my life around - think of a trellis for plants to climb up. The way I have found meaning and purpose in my life has been through connecting with something much, much larger than me, and recovery has given me the tools to do this and continues to teach me how to use them. I have learned how to assume responsibility for my life - not how to totally control and manage every aspect of it, because that’s impossible - but how to learn who I am, discover what my real needs are, work toward getting them met, and even start to realize a dream or two.
I cannot possibly do this on my own. But I don’t have to. I can learn to ask for help - and to accept the help that is already right in front of me, beginning with the very bedrock of advocacy: I am not alone. However convinced I was that no one could ever understand or accept me, or that I could never understand or accept myself, the reality, the truth, was and is that I can. It is an unending source of gratitude for me to sit in a room full of people, listen to someone dare to talk about something which they are desperately struggling with, and look around the room to see others’ heads nodding. They understand - they’ve been there. And they are willing to share what they have learned about how to get through whatever-it-is. I would suggest to you that this is a form of advocacy - learning from each other, and passing on what is known in some circles as our experience, strength and hope. Thus if an autistic person develops substance-abuse issues, it certainly is a serious matter but is not the end of any chance for things to get better. The only way my autism could ever have been diagnosed was after I got into recovery... and that is also the only way my son would ever have come to be. It took what it took, that’s all.
You see, to me the goal of advocacy is not finding ways around difficulties, but finding and following a path which leads right through the middle of the hardest stuff, because only in that way can learning and growth truly occur, whether for individuals, institutions, or whole societies. This approach offers freedom from the notion that improved conditions for one group must necessarily come at the expense of everyone else, because the way we think about and act toward each other cannot be measured just in economic terms. The Wikipedia entry for advocacy says that it “aims to influence public-policy and resource allocation decisions...” Now it’s easy to assume that “resource allocation” means if one group gets more, another group gets less, but it doesn’t have to be that way.
Let me offer one example: as I mentioned earlier, I’m a visual thinker, like some other autistic folks - as many of you are aware, Temple Grandin wrote a book titled, “Thinking in Pictures”. Actually, I tend to think in visual metaphors. Not all of the imagery I get is useful, but a lot of it is, even though not all of the useful stuff is comfortable - or pretty. But I have to know the truth as best I can understand it, and if my mind works well with imagery then that’s a vehicle I can use for receiving and expressing ideas, including complex ones.
Or at least I could do this, if ideas were presented to me visually and I had a means of expressing them visually. So that suggests that, if I was hearing a lecture for instance, concurrent visual presentation of the concepts could aid in my understanding the material. Not Powerpoint slides of the same words I was hearing with bullet points added, and not gratuitous clip-art pictures, but carefully-crafted visuals which effectively conveyed conceptual information by means other than speech.
One does not have to have special needs to benefit from this reinforcement: it’s widely known that body language is an important component of communication - just ask anyone who has had an email misunderstood and ended up in an argument. We have built-in tools such as tone of voice, posture, facial expression, and the like to help convey emotional meaning - some of us have to work pretty hard to learn what all these mean and how they work, but at least they’re available if we can. Well, what if we had similar tools available to help convey conceptual meaning? Couldn’t everyone benefit from that?
There are already working examples of this notion, such as American Sign Language as used by the Deaf community, which is said to have additional features lacking in English. And some of us autistic folks pepper our speech with references to cartoons or TV shows because of the meaning such references have for us, whether or not that meaning is shared by baffled parents, teachers or fellow students. It’s not gibberish, it’s an effort to convey meaning. And now I’ll ask for another show of hands: has anyone here seen the episode of “Star Trek: Next Generation” in which a people spoke entirely in metaphors? If not, it’s titled “Darmok”, and may be found on disk 1 of season 5. Netflix has it. That’s your homework assignment.
Still, though, it’s fair to ask: “That’s all well and good, but where are these visuals supposed to come from? Do you expect every instructor to go back and caption all their lectures? Who is going to pay for this?” Well, an exploration of this concept might make a fine doctoral thesis for a team of communications majors, development of the tools to do it effectively might make a good open-source software project, and building a library of suitable visuals might be done collaboratively and shared for the public good under, say, a Creative Commons license. So the answer is, it comes from the community.
And look at the door this opens for the Wikipedia definition of advocacy: “public policy” no longer refers only to the mission statements of governmental agencies or NGOs. It means the policy - the guiding principles - of the very lives of those who make up “the public” - in other words, everyone. I can therefore influence my own “public policy” by choosing what principles I want to live my life by. Viewed in this light, advocacy becomes transformed from a specific tool used in specific situations to a way of life. And the practice of “resource allocation” leaps off the spreadsheets and Powerpoint slides to become a never-ending stream of choices - of opportunities - to decide how we will each spend our time and our energy.
Not all of these involve great, noble causes: I live by myself in a small apartment, and if the dishes are to be washed I have to allot some resources and go wash them. But what is behind even that small action is the notion that I am worth taking care of, and every self-care activity I engage in affirms that, and becomes an expression of self-advocacy: I have a life, and can use it to take care of myself, and to interact with others, and get to know them - and let them get to know me. I can be part of a larger society, even if I do not fully understand what everyone does or why they do it, and even if I don’t agree with everything I see or hear about.
By contributing my efforts and skills, even if they’re “splinter skills” which might not be that useful on their own, I can help build something much larger and more useful than I could ever do by myself. Once in a while, I can even be the first one to suggest something new or try something different: those of us who think outside the box - who sometimes may not even see the box - can serve a vital function in society by keeping everything from becoming hidebound. Or we might find ourselves simply advocating for the truth, like the little child in the fable who kept insisting that the emperor had no clothes. (These days, she or he might even say, “Dude, you have no clothes!”) And when one person finds the courage to do this - to go first - then others become encouraged to do likewise, and we can find ourselves accomplishing together what we could never do alone.
I want to relate some more of my son’s story: his autism diagnosis was not the end of the difficult times. His mom and I, who by that time were divorced and shared custody of him, found that neither of us could provide the structure and the advocacy that he needed. We were trying as hard as we could, but the situation, particularly with the school system’s afterschool program, had become very adversarial. We felt powerless and were discouraged, demoralized and desperate. Finally someone gently suggested the possibility of therapeutic foster care, in which a child is voluntarily placed in another home to receive specific services - in this case, structure and effective advocacy. We agreed, and in 1995 he went to live with the family which he still lives with, fifteen years later. Letting go of raising my own child was the hardest thing I have ever done... talk about a path leading right through the middle of the hardest stuff. If anyone had told me at the time that things would work out as well as they have, I would not have dared to believe them. (I offer that to those presently in the midst of a crisis who feel that a good outcome is simply impossible.)
And look what showed up along the way, during his high-school placement in Buncombe County’s Progressive Education Program: Andrew became a peer tutor for another special-needs student, helping her with organizational matters. Living with his own needs gave him the understanding of others’ needs, and he had the compassion to reach out and help - a compassion which I am sure is shared in this room today. My own ability to practice these and other, similar principles has brought me a long way from where I was many years ago, when I lived in such isolation. That starting point isn’t surprising, given that autism’s very name is derived from self-centeredness, but I have since learned how to reach out and connect with others. Besides, if doing such things requires deliberate effort, then I have to - and I get to - pay more attention to my own life and be present for it, instead of kind of sailing along on cruise control. There may be less breadth to some aspects of my life, but there is substantial depth. So the possibilities for enriching my life by connecting with others are there, even if it takes a lot of effort at first - and the rewards are a kind of abundance which my life could never have otherwise had. I’m sure everyone here can appreciate the value of this.
Outside this room, however, there are a few - with loud voices, and often found sitting behind microphones - who might ridicule this kind of thing as “singing Kumbaya”. Well, my understanding is that song was first found on the South Carolina coastal islands in the 1920s, among those who spoke the Gullah dialect. It turns out that the lyrics mean “Come by my God” - come by for those who are laughing, or crying, or praying, or singing. Now this is just my opinion, but if you ask me, we could do a whole lot worse than joining hands and asking God to come by. That activity seems entirely compatible with the notion of advocacy, of being of service to others, and of joining together for the greater good.
Let me emphasize that I’m speaking in spiritual and not religious terms here, and I’m certainly not promoting particular beliefs. If anyone did that in a setting like this, I’d be pretty upset. But as someone who spent many years isolated and miserable, trying desperately to manage my own life and failing over and over, I can certainly report that having something greater than myself to turn to for help works a whole lot better, whatever my concept or understanding of it might be.
Now I’ll give another example of how we autistic folks might participate in the advocacy process: beginning in the fall of 2000, I returned to college after a 32-year hiatus and began taking one or two courses a semester. This went on for four years or so. To my amazement, I found that I both enjoyed and did well in sociology courses - the last thing one would expect an autistic person to succeed in. But when I thought about it a little, there was no mystery at all.
For my entire life, I had struggled to understand what was going around me. With the equivalent of a social learning disability, I lacked the intuitive sense of how to interact well with others, how to deal with the unpredictability and inconsistency of daily life, even how to understand myself as a social being. But here were course after course which taught how and why people interact with each other, how societies function, how individuals even come to have a sense of self - so all this stuff which I didn’t know, I could learn. And my life made more sense as a result of taking those courses, and my quality of life has surely improved. So perhaps teaching the basics of sociology to autistic folks might be an aid to self-advocacy. To use a current expression, I’m just sayin’.
One caution, though: there are times when an autistic person’s successes can seemingly work against them, if they are misinterpreted as being “proof” that services or accommodations are no longer needed. No one would suggest that, because a person in a wheelchair made it to a classroom by going up a ramp, their presence demonstrates that the ramp isn’t needed any more. It just doesn’t work that way - the underpinnings of a success can’t be jerked out, defunded and put into storage, leaving the success hanging there in midair. This serves as a reminder that advocacy is a process rather than an event, and with the other aspects I’ve spoken of today we’re reminded that it extends across networks of people and institutions, rather than being isolated instances of helping one person have one need met.
This larger view sure sounds like it would require a lot of staffing, doesn’t it? Well, fortunately it’s got each of us, to whatever extent we’re able to pitch in and help. The needs are certainly there, and even folks who take pride in “standing on their own two feet and not needing anything from anybody” are probably more dependent on others than they realize - or if they aren’t today, they could well be tomorrow. It is not possible to provide all things for all people - but it sure seems possible for all people, together, to have what we need. There haven’t been “cutbacks” in line items such as compassion and understanding, patience and tolerance. With these, dealing with life, even with special needs, may never be easy but it is certainly possible - and can be deeply rewarding.
So that roast duck doesn’t have to fly into my mouth for me to be fed, as long as I can find the nourishment I need somehow. And I don’t have to do that alone. None of us does. We have each other.
Thank you all.