Thank you for inviting me here. I’m going to cover quite a lot of ground this morning, so let me first advise you that this talk is already posted online. It is at www.davespicer.org along with other talks and conference presentations I have given over the past ten years. So don’t feel compelled to take lots of notes - it’s up to you.
It is possible that many of you have never knowingly met an autistic adult. That qualifying word is important, because something has to happen to autistic kids when they grow up. In the past few years there has been more awareness, and more media coverage, of those of us who are both adults and autistic. There are quite a number of us around. How have our lives turned out?
That’s a good question to ask. And for those of us with autistic family members, that one question brings others with it: What will happen? Will things turn out all right? What will our family members’ lives be like? What will our lives be like? Between them all, questions like these carry a great deal of emotional weight. Especially if - no, especially when - we find ourselves asking them in the middle of the night.
Predicting the future is beyond me. I usually have my hands full with trying to understand the present. But I have gotten a better view of the past - of my past - and I mention that for two reasons. The first is that I’m basically at peace with it. Everyone did the best they could with the understanding they had at the time. It took a while for me to come to that view, but I did get there. And the second thing about my past is that I can see what’s been happening over the years, and from that get at least some idea of which direction I’m headed.
It turns out that 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 the remarkable thing is that they keep coming. I’m 60, and I’m still learning - and not little things which fill in a gap here and there, but big things which keep my life growing and expanding and feeling renewed. There isn’t a period of “good old days” to look wistfully back on. Rather, I’ve had the sense, for quite a while now, of being in the prime of my life - and having that prime move right along with me. The standard model is inadequate to describe what has been happening. I not only didn’t see that coming, I didn’t think anything like that was possible. If you’ll bear with me for a couple of minutes, I’ll sketch a picture of what things were like before my autism diagnosis, and then explain why that’s relevant here. Some of what I describe might look familiar to some of you.
I was born in Connecticut in 1948, and I’m the youngest of three kids. During the years from childhood through high school, I did okay academically but had all these perplexing social issues. Most of the time I was pretty quiet and didn’t mix with very many other kids; when I did the results were all over the place. Sometimes I could figure out what to do and say, and sometimes I’d wind up doing something really inappropriate and feeling embarrassed or humiliated. It was like I had a social learning disability. Because I scored quite high on various aptitude tests, everybody assumed that I was smart enough to know what to do. That meant that I was an underachiever who just wasn’t trying hard enough. There was plenty of frustration and disappointment and worry to go around.
At college things got much worse. 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. My level of emotional maturity, already affected by developmental issues, was essentially frozen in place. I stopped growing. This effect is pretty widely known among those of us with substance-abuse experience. 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 my junior year, failing every course.
The next fifteen years contained one brief, unhappy marriage connected with my college experience, 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. I didn’t understand the world, the world didn’t understand me, I sure didn’t understand myself, and it looked like none of that could ever change. Well, things did start 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. Somewhere in there, I began seeing mental health professionals for counseling. 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.
Now, fast-forward several years: our son was struggling in school, entirely for behavioral reasons. Suspensions, conferences, phone calls to come pick him up, and so on. We had been to 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 over the years was such that I have not worked since.
Okay. Those four paragraphs are enough to say about that here. Other material at my website goes into more detail for those who feel it might be useful to look at. My point in mentioning it at all is that a little while ago 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 to move things from where they were onto the path where they are now. And the rest of my talk will be about that process, what it has taught me, and what it continues to teach me.
The first observation we should make is that age 46 is not the optimal time to have a developmental condition identified. It was with me all along. But once it was diagnosed, and I began receiving support from folks who were familiar with what I had been struggling with for so long, and I began - finally - to understand myself, then some doors started to open. There were professionals who understood. What I had been experiencing basically all my life was real. And on top of that, there were other people like me. I was not the only one. Their style of thinking was familiar, and comfortable, to me. There were places I could go to meet with others like me - there were even presentations I could attend which were put on by people like me - and I finally felt like I belonged somewhere.
That was the beginning. In late 1995 I got online and discovered an Internet community of autistic folks which extended across several countries. I started getting into email discussions with bunches of people, some on the autism spectrum and some not, and started reading some of the books written by autism-spectrum individuals. The following year brought the first of a series of annual conferences of, by, and for autistic folks. That’s where I attended those presentations I just spoke of. Then in early 1998 I was invited to present at an Asperger Syndrome conference in Sweden. Later that year, I married a remarkable woman who is both knowledgeable and understanding concerning autism, and our shared dedication to the process of working on our marriage, and our love for each other, has us approaching our 10th anniversary this year.
By the Fall of 2000, things got interesting in yet another way. After a 32-year hiatus, 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, including the professor. I loved the subject material and did well academically.
And here, another huge piece fell into place. Nearly all of the courses I was taking - and earning A’s in - were sociology. It is not intuitive that an autistic person would like, and do well in, sociology. That’s putting it mildly. But let’s think about it for a minute: these courses taught how humans interact and function in societies. They also taught why they interact as they do. Finally - a sensible explanation of why people do things! I could’ve used that decades ago. Without an intuitive sense of what to do socially, all I could do was imitate, often blindly and clumsily. But here I could learn not just what people do, but why they do it; what purpose it serves. That in turn helped me to become more patient and tolerant with others, and more willing to be in social situations so I could watch and see what was happening. I could develop and utilize algorithms for socializing, in place of the intuition I lack. These in turn let me push my “comfort zone” a little and socialize more.
One particular course brought me up against an interesting situation: the established theory in that part of the field - an area of study called “symbolic interactionism” - didn’t seem to have any room in it for us autistic folks. It looked to me like we failed to meet the theoretical criteria for being human. I found myself scribbling lots of notes in the margins of my textbooks. Now, years of substance-abuse recovery had given me the equanimity to mostly find that amusing rather than insulting. (In other words, I could question the theories rather than questioning the parentage of the people who came up with them.) Just as I said at the beginning when I was talking about continuing to grow throughout our lifetimes, I found once again that the standard model was inadequate to describe what was taking place. And so I wrote about that - since my highest SAT score was in English - and that was more grist for the mill in helping me realize what interesting times these are 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 have a wonderful opportunity to be partners in this process. I feel that we also have a responsibility to do this for other autistic folks who cannot, because in living with autism, they are our brothers and sisters. I am grateful that we autistic folks also have the help of advocates, as long as others’ speaking on our behalf does not supplant our own opportunity and responsibility to speak for ourselves. Our voices matter, and for our own well-being, we need to be listened to.
After several semesters of taking courses at UNC-Asheville I stopped, feeling that I had accomplished what I set out to do. My first, nightmarish college experience was now overlaid with a successful one. The symbolic interactionism course led into an undergraduate research project, and my extensive notes from that project are on my website with all the other stuff. Since then, I have been speaking at Autism Society local unit meetings and other gatherings, and serving the autism community.
Right along with this - and making everything else possible - I have continued, over the years, in the daily process of substance abuse recovery. The structure, support, guidance, and wisdom offered there have allowed me to connect in ways that nurture me intellectually, socially, emotionally, and spiritually. And on top of all that, I am learning to take better care of myself.
All right. What we have so far is what sociologists would call an “overcoming narrative” - things were very bad, and now they’re very good. 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. But it would be a disservice to you if I stopped here, because a couple of real big pieces of the picture would be missing.
One is that, as the parent of an autism-spectrum kid, I had to let go of all the assumptions and expectations I had about how things would work out. I had to become willing to do whatever it took, to “go to any length” as it’s sometimes put. In my case, this meant letting go of raising my own child. In 1995 his mom and I voluntarily placed him into therapeutic foster care, and he has been living with the same family for thirteen years now. That was the hardest thing I had ever done in my life. If someone could have told me at the time how well that would work out, I would not have dared believe them. But in the years since, I’ve had the chance to learn indelibly that my feelings in the middle of a crisis are not a good predictor of how things will turn out. And this is true for my own life as well as the life of my child. Crises have a way of forcing reevaluations. The process is not pretty - or gentle. But looking back, I can see where my path had to lead through the hardest stuff to allow me to get to where I am now.
Another piece involves my self-awareness, and my ability to manage my own life. 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, and so are the nonautistic people around me. Even with the best of intentions, people sometimes make mistakes. 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 if I look in front of me, I see another “next right thing” that I can do, so that I can get right back on the path. Perfection is not required. A good-faith effort is.
Another example: knowing that I’m likely to overreact in some situations is good information to have, but then I also need to be open to getting help with that. Learning to check with people to see if maybe I’ve misunderstood or misinterpreted something. Sometimes I’ll hear a person mention the possibility of doing something and think they’ve made an ironclad commitment to do it, only to be bitterly disappointed when it doesn’t happen. Or I will miss the importance of doing something which seems small and incidental to me but means a great deal to the person expecting me to do it. Asking about these things may seem clunky compared with just intuitively knowing them, but it’s the best workaround I’ve got. And without workarounds, I wouldn’t stand a chance.
I feel that principle extends to living with autism in general. Society seems geared toward those whose neurological functioning is somewhere in the mainstream. There are lots of ambiguities, sometimes even blatant contradictions. There seems to be this long list of dos and donts which comes with an equally long list of exceptions. They’re not printed in Greek, but they seem so hard to understand, memorize, and execute that they might as well be. Sometimes I feel like I’m in this intricate dance where someone is calling out each next step, but I’m deaf. Or following one colored path through a maze when I’m colorblind and all the paths look the same. I might be tempted to just throw up my hands and yell, “I’m autistic! What do you expect?” and stop. Well, what are the choices at times like that? Confrontation, withdrawal... or how about problem-solving? I might feel like sulking, but problem-solving is much more productive, I feel better quicker, and the same things stop happening over and over. I heard a minister once joke that these days he was as confused as ever, but on a higher level, and about more important things. I got both the humor and the truth behind it. Things like this help me to relax, and to not take myself quite so seriously. I’ve had to learn how to do both of those. It didn’t come easily.
One more example using vision as a metaphor: 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, it’s my responsibility - and opportunity - to shift my perspective, to use a different approach, so I can see what’s going on and figure out what I need to do. Maybe a lack of one particular skill can be compensated for with a different skill. Maybe using examples from some special interest I have can help me understand other things. Sometimes, I have to learn to accept my limitations, and be okay with needing help from others with certain areas of my life. And if someone tries to make fun of me for being dependent on others, I can smile and ask them if they grow all their own food and make all their own clothes. I mean, in the fullest sense of the words, they can’t even feed themselves, and they’re trying to make fun of me?
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 start ticcing, as a residual side effect of medications I’ve taken over the years. 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... even though acting out once in a while isn’t written up as “regressing” when they do it.
But tomorrow is another day, and I’m real grateful the days come just one at a time. If I can learn to have reasonable expectations of you, and to 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 if you can do the same for me, then you won’t get mad at me as often either. And then we can reach out toward each other, and find ways to understand each other - and ourselves - better. It may not seem intuitive to everyone that autistic folks can participate in this process, that along with being able to learn we can also teach. Not from a position that claims 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’ve had some remarkable experiences, but that’s because the process itself is remarkable. There’s plenty of room for all of us - 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. My understanding of the capabilities of programs and services, and my expectations of those providing or administering them, needed to be broken so that I could accept the larger reality. 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 it is my responsibility - and opportunity - to do just that, so that I stay willing to keep trying, to keep learning, and to live each day as it comes. I would recommend that path to anyone. You don’t have to be autistic to get to keep growing.
Some days are very hard to get through. Others are wonderful. But either way, I don’t have to walk through them alone. We need each other. And what do you know: we’ve got each other. Thank you.