.
.
They ask me questions. Carefully, I
answer, so deliberate, ex-
plaining once again the sense
in why I do things as I do.
They show me aspects of "the world"
like cheating, violence, lies, deceit,
and tell me I must know all this
to function in it. Simply put,
They cannot see the path I follow.
Me, I know it's there - it doesn't
Seem like home somehow, but nowhere
does, and look what their religion
says - to "be not of this world but
in it". That's about just how it
is and how it goes this path that
leads a different way that what they'd
hoped for. Then they cry - I see
the track a tear makes down a face,
and wonder why they aren't at peace.
The weather's not so bad inside here,
really, kind of quiet watching
through the window, seeing, hearing,
sitting, thinking, contemplating
all the noise outside. They say
"that's how the world is". Fine, but their frus-
tration, living in that world,
gives pause to folks like me who feel
their pulling, hear their pleas, receive their
training, all designed so we can
"join them" - do we have to? There?
…that was a poem I wrote in 1996, in the early years of dealing with my autism diagnosis. I chose it as our starting point today because, in words like these, autism speaks. Mine is only one voice - there are many others among my brothers and sisters across the autism spectrum - but here today it’s my turn, and I’ll do the best I can to serve the autism community with what I say. And the text of this talk will join others I’ve given over the years at my web site which is davespicer.org for those interested.
My poem ended with a question, and it is far from the only question that can be asked. For those of you who, like me, have an autistic child here are some others: What will happen? Will things turn out all right? What will our children’s lives be like? What will our lives be like? I’ll bet some of you have asked these in the middle of the night. Well, predicting the future is beyond me. I usually have my hands full with trying to understand the present. But I can address peoples’ concerns in three ways today: by sharing my own experiences of living with autism, by showing you that things can turn out well even when that seems far too much to hope, and to remind you that none of us are alone. We have each other.
I’m 62 years old, which is an age by which most folks have established a life history, a clear path which they’ve been following for many years. Looking six months forward or back from that point in most folks’ lives, you probably wouldn’t see a lot of difference. And some elements of my own path have been consistent for a while: It’s been sixteen years since the Asheville TEACCH Center diagnosed first my son and then me with autism, and it’s been that same amount of time since I’ve worked. My wife and I are coming up on our twelfth anniversary in July. So things ought to have settled down into a routine by now. Well, have they?
The answer to that question is both “Yes” and “No” - and not in the sense of “some of each”. Both are entirely true; firmly “Yes” and firmly “No”. And the reason is one that I suspect even concrete thinkers could accept - and one that I can go beyond accepting to embrace: the routine, for me, is to continue learning and growing. Of course I’ll never know everything or understand everything or do everything - that’d be impossible, but more importantly it misses the point. There is always more - more to learn, more nice stuff to experience, more not-so-nice stuff to deal with and work through. The process, the day-by-day walking a path of learning and growth, is the point. That is the purpose of my life, and where I find its meaning. So yes, my life has “settled down” to that.
On the other hand, I can’t see very far down that path, and unexpected things keep happening. New possibilities seem to spring up out of nowhere - and indeed some of them are things I knew nothing about. Others, though, have been hidden in plain sight all along, needing only my willingness to look more thoughtfully at them to discover their real meaning.
Even with all the uncertainties and unexpected developments, though, I’ve gotten at least some idea of the direction I’m headed. And I like what I see. More than that, I love my life today. My development 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 they keep coming, and not just little stuff, but big things which keep my life expanding and feeling renewed. Instead of “good old days” to look back on, I have the experience now, at 62, of being in the prime of my life - and having that prime move right along with me. I not only didn’t see that coming, I didn’t think anything like that was possible. The traditional model is inadequate to describe what has been happening.
All I wanted, really, was an interesting life… and by the time I heard the saying “Be careful what you ask for” it was already too late. With that in mind, I’ll take a little while now to describe what my life was like pre-diagnosis, and then I’ll speak further about the more recent years. I’ve been through a lot, but please bear in mind that nothing that happened was due to ill intentions on anyone’s part, especially my family’s - we all did the best we could with the personal understanding and cultural norms which existed at that time.
I was born in Connecticut in 1948, so my childhood was in the 1950s and into the ‘60s. School was okay academically but I had all these perplexing social issues. I was pretty quiet and didn’t mix with other kids a lot; when I did 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 that I was smart enough to know what to do, and was therefore an underachiever who just wasn’t trying hard enough. There was plenty of frustration and disappointment to go around.
A lot of times, my outsides didn’t look anything like my insides. I sort of learned how to laugh at the right times, use the “right” gestures, expressions, sometimes even social behavior. But none of that made me any less autistic - instead, I sacrificed my own identity in order to gain the acceptance and approval of others. By the time I was 12 or so, I came across as a quiet, polite, well-behaved child, and if anyone had asked me how I was doing, I would have insisted that I was fine.
I wasn't fine - I was lost. What I desperately needed was acceptance of me as I was, impairments and all, as a starting place to learn how to relate to other people and to understand and work with my own nature. But instead, I found validation and acceptance only in behaving "correctly”. I was expected to be "okay", so that’s how I said things were, regardless of the cost. And I tried to make sense of the world around me by listening to what people told me and turning what they told me into my beliefs about myself.
So "there is nothing wrong with me" became "Don't ask for help, because I'm not supposed to need any. Besides, if anyone looked really closely and still didn't find anything wrong, all of this really would be my fault. It's better just to have a small hope that things could be better than to risk finding out that they can‘t."
And "all I need to do is to try harder" became "The other people around me are succeeding while I am not, and it must be as hard for them as it is for me. So I am never to complain about difficulty or physical discomfort. If anything is at all possible to bear, it should be borne in silence."
Finally, "if I really wanted to change, I could" evolved into "I am deliberately resisting having my life, and the lives of those around me, be any better. I don't know why this is. But everyone feels this way, and they can't be wrong because look who they are and how many of them are saying it." In other words, I was deliberately making the people around me upset and angry, with no understanding as to why.
As a child, I felt that using a range of tone of voice and facial expressions was emotional manipulation and therefore unfair. So I had to compete with others’ faces and voices using emotion-free reason - the facts of the matter should be sufficient to demonstrate what I needed. I sure didn’t understand how typical socialization was supposed to work, because so many things kept going wrong. I couldn’t figure out what was true and what was not, so instead I constructed a model of what I thought the world was, then lived in constant fear that someone would rush in and tell me that it was wrong. And that happened over and over - thinking things were okay, and suddenly being told they were not, due to something I had done hours or days earlier. My understanding of the world would then collapse, and I would fall apart emotionally.
So my situation was this: I did not understand the world, they did not understand me, I did not understand myself, and there seemed no way any of that could ever change. It got to the point where I desperately needed help, but was so conditioned to “be okay” that I refused it. Yet many would call my autism “mild”. I would remind you that relatively “mild” hurricanes can still cause enormous damage. As just one example, consider how a child who takes things very literally and has some awareness of the larger world would react to the international posturing and rhetoric of the Cold War, the underlying threat of nuclear annihilation, the fallout shelters and Civil Defense drills and terrifying speculation in popular magazines and on their cover drawings.
Well, in due course I graduated from high school and went off to college - not the state university which several friends from high school went to and which was about an hour and a half from home, but the one I was firmly expected to attend because of family history with it. 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. Meanwhile, in course after course as an engineering major, I was expected to learn material consisting mostly of advanced math, which as a visual thinker I was unable to grasp. That struggle led me to drink more. 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, was essentially frozen in place. I stopped growing. Drinking became self-medication for everything in my life that wasn’t working, and that addictive pattern was to persist for seventeen years. I left college halfway through the second attempt at my junior year, failing every course. And my life went blindly on.
Through the 1970s and into the early 1980s, very little of my life experience made sense. (I don’t mean polyester leisure suits - I don’t think anyone understood those - I mean my own sense of what was happening in my life.) Patterns of social and work-related difficulties kept repeating for no apparent reason, and with no apparent way to change them, as I kept trying desperately to be who I was supposed to be instead of learning, accepting, and being who I actually was.
Art history has many examples of an artists’ work being painted over because it was considered worthless - a waste of canvas. Looking back now, I can see that I painted over large chunks of the canvas of my own life, covering up aspects which didn’t portray what was expected of me and instead offering imitations which looked acceptable at first glance, however clumsy and poorly-functioning they may have turned out to be. And I’ll return to that theme toward the end of this talk.
Now the same behavior which is puzzling in a child can become very distressing in an adult, and the reactions of others to this behavior change as time goes on. On one hand, amusement turns to mere tolerance, then to annoyance, then anger. On the other hand, puzzlement turns to concern, then worry, then fear. My experience is that an autistic person seeing these reactions to himself or herself in others can be expected to internalize the anger and fear, and to begin to feel this way about themselves. This in turn can intensify feelings of isolation and alienation, thus leading to further retreat from others, or hostility, or both. The desire to escape from such feelings can express itself in a number of ways, some of which can be quite harmful. Some folks might become hypersocial to try to mask their sense of differentness and alienation, but I didn’t have the skill set to even attempt that.
So the fifteen years following college contained one brief, unhappy marriage, 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 my second wife and I were living in North Carolina, isolated and miserable. Things finally did begin to change when I got into alcoholism recovery in mid-1983, and that marriage lasted long enough that our son was born in early 1985. We separated the following year. 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.
Somewhere in there, I began seeing mental health professionals for counseling, and attending various support groups for people whose childhoods resulted in behavior or affect similar to mine. Along the way, I received a tentative diagnosis of ADD and was placed on Ritalin, spent about a year looking for nonexistent childhood sexual abuse in weekly sessions which were not covered by insurance, and participated in spectacularly useless experiential group therapy sessions, including one weekend retreat when I actually found myself banging my head on the floor. Needless to say, none of this was much help.
Fast-forward several years: our son was struggling in school for behavioral reasons. Phone calls to pick him up, suspensions, conferences, and so on. We saw 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 was such that I haven’t worked since. (So I was surprised to learn, reading my bio in the conference program, that I had "enjoyed" this career...)
Okay. Earlier 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 I’ll turn now to talking 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 start. In late 1995 I became involved with an Internet community of autistic folks. I read a couple of the books written by autism-spectrum individuals. The following year, I went to a conference put on by and for autistic people. (They happen every year now.) Then in early 1998 I was invited to present at an Asperger Syndrome conference in Sweden.
In the Fall of 2000, things got interesting in another way. After 32 years, I returned to college - this time at UNC-Asheville, talking one or two courses a semester. It was both scary and wonderful. I was almost always the oldest person in the room. I loved being able to actually understand the subject material, in stark contrast to the pages of equations I couldn’t make lasting sense of before, and I 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. And those in turn let me push my “comfort zone” a little and socialize even 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. And so I wrote about that, and the writing became an undergraduate research project. The extensive notes from that project are on my web site with all the other stuff.
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. And 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 continue learning how to take better care of myself, while at the same time being reminded that I’m worth taking care of. And I can learn and practice how to be of service to others as well.
So. 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. In that regard I feel blessed. But the story doesn’t stop there. I can share what I’ve learned, and present-day life still has plenty of challenges… let me now touch on a few.
If people tell me they would have no idea I am autistic, it is because they are seeing a carefully-constructed interface layer, not me. It is not my fault that my makeup happens to include the technical ability to use words in certain ways, in imitation of what I see other people doing. Some autistic folks can multiply large numbers; I construct large sentences. It sometimes happens that this skill is useful in expressing certain ideas. But that doesn’t mean I’m “just like everyone else”. I mask much of my differentness for the convenience of those around me. That’s a lot of work that most people aren’t aware of at all, and having a good interface means that the amount and scope of an individual's efforts at conformity would go undetected until they either failed pretty spectacularly or led to the person breaking down under the accumulated stress.
So an autistic person could be trying extremely hard to do just what was expected, and have their successes actually work against them. It might look - for a while - like they didn’t need help or accommodations any more. Or even that the classification might not apply any more. But accommodations make success possible. No one would say that, because a person in a wheelchair made it up a ramp once, that ramp could now be taken out. It just doesn’t work that way.
Also it’s awfully easy to assume that the process of verbal communication is all one piece; that the ideas go in one end and all these words come out the other. But the more emotionally stressed I am, the less able I am to communicate. The times when I most need help are the times I am least able to ask for it. This has led folks with good intentions to ask a whole string of questions, one after the other, before I could even finish answering the first one. Of course, I get overwhelmed and shut down.
From time to time, I have had nonautistic people insist "but I'm just like that too," meaning "I also exhibit this or that characteristic behavior". As though it isn’t that significant. But think of the difference between someone who occasionally sings opera and a person whose only means of verbal communication is to sing opera. It’s the same behavior, right? But the larger picture is very, very different. Anyone can parrot another’s words back to them, but echolalia isn’t a choice. And who says that’s the only way that echolalia manifests? Imagine a kind of behavioral echolalia, where others’ behavior is compulsively mirrored. Or emotional echolalia, in which others’ emotions are felt with sometimes-terrifying intensity. Much of the violence in movies affects me this way. My own adrenaline wells up and poisons me. I don’t watch very many movies.
What I needed very much as a child, but did not have, was a place where I could feel whatever I felt without people becoming upset or stressed, trying to talk me out of my feelings, perhaps inducing shame for my having feelings, and so on. So the energy from the repressed emotions showed up in a number of different ways, many of them harmful to myself and to others. What I needed to hear, but did not, was something like this:
"It is a special gift to be able to feel things so deeply. Your feelings can soar like a kite in the wind. Listen to them and talk to them and enjoy them. But remember to protect your feelings when they might be hurt, just like you would reel in a kite when a storm comes. And if your feelings are hurt, like a kite that is torn by a strong wind, it is okay to ask for help in patching things up again. A kite can fly just as high with patches in it... and so can you."
Sometimes we more-articulate autistic individuals are told that we have no understanding of other autistic people - that we are somehow different from them. At these times, I think of a man named Vladimir Posner, who was a television commentator in the former USSR. He spoke flawless English, and certainly did not "sound" like a spokesman of the USSR. To me, trying to separate us more-articulate autistic people from our brothers and sisters elsewhere on the autism spectrum is like suggesting that Vladimir Posner had no particular insight on the Soviet Union because he spoke such good English. It seems absurd. What is societally accepted as my “identity” seems to me more like a costume I can wear - not a disguise, because I can still be identified and still behave authentically - yet it remains something I deliberately “put on” in order to interact socially. It’s both a user interface for the convenience of others and something to wear when going out, just as a hotel guest might dress up to leave his private room and go to the lobby and socialize with others doing the same, then return to his room afterward and put the costume back on its hanger. I cannot be “in costume” all the time - I need rest.
The process for me is one of learning and practicing, piece by piece, and putting together something that works satisfactorily. Much is trial and error, and progress is uneven, and I may never be able to socially “act my age”. But I see it as one of those "good news - bad news" situations. The bad news is that I have to work on it the rest of my life... and the good news is that I get to work on it the rest of my life. This doesn’t seem like magic to me - just good common sense.
Some people try all kinds of activities like bungee jumping or mountain climbing or "extreme sports" just so they can face a challenge, and for the good feeling they get when they succeed. These kinds of endeavors can cost a fortune and take years to learn how to do... but we autistic people have lots of challenges already built right into our lives. Because lots of things that are easy for others are hard for us, the opportunities to take on difficult tasks, give them our best effort, and feel good about ourselves, are all around us. So we have no need to go halfway around the world to find something challenging, do it, then feel bored until we can think of someplace else to rush off to. All we need to do is open our eyes in the morning, and see what presents itself.
Getting here has not been easy. As the parent of an autism-spectrum kid, I had to let go of all the ideas I had about how things would work out. I had to become willing to do whatever it took - to go to any length. In my case, this meant letting go of raising my own child. Some aspects of his school experience were going very badly, and we were ineffective in dealing with it. The atmosphere became very adversarial, and no matter how hard we fought, things kept getting worse. We were exhausted, and demoralized, and effectively powerless. So in 1995 we voluntarily placed Andrew into therapeutic foster care. That was the hardest thing I have ever done in my life. If someone had told me at the time how well that would work out, I wouldn’t have dared believe them. But now I’ve learned that my feelings in the middle of a crisis are not a good predictor of how things will turn out. Crises have a way of forcing reevaluations. The process is not pretty - or gentle. Looking back now, I can see where our paths each had to lead through the hardest stuff to allow us to get to where we are now. Andrew’s path led him into a very structured home setting, getting effective advocacy, having a wonderful experience in Buncombe County’s Progressive Education Program, and taking several college courses since. He has been living with the same extended family for fifteen years, and they all now live in northern Maine. My own path led into long-term disability leave, back into college, and now into many opportunities to write and speak about autism, like I’m doing right now. It takes what it takes.
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, even with good intentions, and so are the nonautistic people around me. 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. On the occasions when I get overwhelmed and exhausted and shut down or crash, I wish the well-meaning people who say to me, “Oh, but you must be very high functioning” could experience what I experience at times like that. My location on the spectrum, even a simplistic one-dimensional one, varies depending upon the circumstances. All I can try to do is the best that I can, whatever that ends up looking like.
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 there is another “next right thing” right in front of me, so I can get back on the path. Perfection is not required. A good-faith effort is. There is a place for “survival of the fittest”, I suppose, but there is also a place for compassion and mercy, and to start things moving in that direction, someone has to go first, even if there is no guarantee that others will reciprocate. Otherwise, if nothing changes, nothing changes.
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 titled “The Prophet” eighty-seven 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. Likewise for my understanding of the capabilities of programs and services, and my expectations of those providing or administering them. 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 I have to - and get to - do just that, so that I stay willing to keep trying, and learning, and living each day as it comes. And you don’t have to be autistic to get to keep growing.
Of course, I recognize the value of “outside help”. As a visual thinker, I have lots of images pop into my mind, some more useful than others. One in particular reinforces my understanding of why I need outside help and always will, and what form that help needs to take for me - it’s the image of a trellis.
Many plants can stand on their own. And many people can be relatively self-sufficient. But some plants - and some people - need ongoing support to grow to their full potential. Something to twine around and depend on for additional strength when, for instance, a storm comes. The support - for the plant a trellis, for me organizations like the Autism Society - won’t do the growing for me. That’s not their purpose. But they make the growth possible and facilitate it without confining it. Now there are times when some judicious pruning is needed, when a plant or a person starts to run wild. One counseling professional I see does this with me every so often, and I’m always startled, but I can see the need for it when I stop and think. He’s not trying to train me, like some plants are trained, into this or that strictly-laid-out shape. And he’s certainly not trying to stunt my growth to turn me into some kind of bonsai. The guidance and support I receive these days feels much more natural than that. No one is trying to force me into some artificial, limited model of what they feel I “should” be - this would, from my perspective, reduce me to a caricature. Now caricatures can be positive, flattering representations of a person’s most appealing qualities… but there’s an old saying that “beauty is in the eye of the beholder“, and vital parts of a person’s essence - of my essence - may not meet some other folks’ criteria for desirability, or even for acceptability. And autism itself has even been caricatured, in ways which some of us on the autism spectrum have felt were less than fair and less than balanced.
I’m certainly aware of the belief that inside every autistic individual there is a “real person” trapped inside. Let‘s presume, for the sake of argument, that this was true for me as well. So what was “the real me” hidden by? Well, my answer would turn that belief on its head: I would contend that what hid “the real me” was not autism but rather my desperate efforts to look, sound, and act “normal”, whatever that is. And some of my autistic brothers and sisters would certainly agree with that assessment. But I see a problem with both views, however satisfied and - dare I say - righteous a person holding either of them might feel in the heat of battle.
You see, the numerous sociology and anthropology courses I took at UNC-Asheville have helped me to see something which my years of substance-abuse recovery have also been guiding me toward: that shared across humanity, there is a fundamental connection which exists underneath all of the observable differences. And if we could pool our resources to further that connection, then I can only try to imagine what all those resources could accomplish if they were being used to further common goals instead of in competition with each other. We have the potential to get along fine, if only we can each wake up a little more and deepen our individual understandings rather than trying to drag others from their partial understanding over to ours.
We on the autism spectrum who can communicate our experiences and ideas need to do so, both for ourselves and for our brothers and sisters on the spectrum who cannot. Our voices matter, and for our own well-being, we need to be listened to. Advocates can help us to be heard, but they cannot replace our own voices. When folks like me have the opportunity to join the dialog and contribute from our perspective of living with autism every day, we are able to enrich the discourse around autism in a way which no other entity seeking to speak for us could. Nothing can substitute for our active participation in this process. Now, I cannot - and I do not - cast myself as a neutral commentator in all of this. I have experienced far too many years of living inauthentically to do that - of pretending to be like most everyone around me - which meant pretending to be both more than I was and less than I was. And it meant that I was unaware of the possibility that neurological diversity could be of value to society just as cultural diversity is. My “neurological orientation”, to borrow a term normally used with brain-scan images, is different from most other folks’. Yet my experience, in my mind and in my heart, is that it is no less valid a way of living life, and that being autistic is part of how I was made. I am very much a stakeholder, and wherever this or that DSM revision might position me, I have a certainty that I belong somewhere just as I am.
As I attempt to follow some of the scientific research into the workings of the brain, I am reminded of a saying which is a favorite of mine: “If our minds were so simple that we could understand them, then we would be so simple that we could not understand them.” For me, that means that I will never understand everything, but that I have to make a good-faith effort to understand what is being learned.
And there certainly is all kinds of research continuing on why we humans are as we are. Most of us are right-handed, yet some of us are not. Most of us are neurologically typical, yet some of us are not. And there are other differences, some small and others considered large, which can put us in some kind of minority. And then there is usually a price to be paid - sometimes a very high price, depending on how society treats individuals who are differently abled or differently oriented in any given manner. Decades ago, they thought autism was caused by “refrigerator mothers”. We know better now, because of the science that’s being done.
The price of differentness often includes forced conformity with the social norms of the time, as when my mother, who was born in 1910, was forced in school to write with her right hand even though she was left-handed. That may seem quaint now, but it was serious business at the time. In my own childhood, I began decades of trying to pass as being neurologically typical because there was no understanding of those of us who were different in the ways that I was and still am. My life finally began to make more sense at age 46 - actually, the rest of my life began then - and so I have a special place in my heart for Baby Boomers who are autistic yet may still be unaware of it. There are bound to be many undiagnosed autistic folks in their 50s and 60s now, and some even older. I think we have earned the right to be accepted as we are, and to use this acceptance and self-understanding both to improve our own lives and to further enrich the lives of those around us. When we finally come to realize who we’ve been inside all along, our lives can be transformed. Can you imagine being able to look in the mirror, see the gray hair, and say, “I finally know who I am”? What good purpose could possibly be served by denying someone that?
And this is where I need to return to that painted-over picture. Trying to please others by masking differentness, thereby sacrificing parts of one’s own identity, can have far-reaching consequences, and quality of life can suffer terribly. That’s a big part of why I hope older undiagnosed autistic folks can finally come to terms with their natures, and therefore with their lives. But there is one other thing I need to touch on before I finish.
There is no law that says that an individual with one major difference from most other people cannot have a second one as well. And if both of these are pushed aside in a desperate effort to fit in with the majority, then the sense of estrangement from one’s real self is compounded. It is possible to have autism diagnosed, start receiving services and gain better understanding, yet still not have all the pieces of the puzzle. This can have a serious impact on an autistic person’s quality of life until the other differences - whatever they might be - can be identified so they can get whatever additional support they need. For instance, consider an autistic person with a differing sexual orientation. It happens - I know this. All of the issues of self-acceptance, societal acceptance, bullying, boundaries, and so forth, which are hard enough for neurologically-typical folks to deal with in this situation, are even harder for people with the added social challenges of being autistic. Without appropriate support and understanding, the only thing left for the autistic person to do is try to maintain some kind of false front while withdrawing farther and farther, perhaps by using self-medication like I did, into a troubled, deeply conflicted solitude. My life might well have been lost to suicide, especially during my first few years of being in that state, which started up at college. Even after entering alcoholism recovery at 35 and getting diagnosed with autism at 46, a big part of my life remained broken until I finally woke up and stopped pretending to be something I’m not. For me, that happened at age 60. I’m talking about it now, in hopes that it might help someone else in a similar situation to receive whatever support and understanding they might need. It is more available now than it was decades ago. This could save lives.
In 1994, the musician named Seal released a song titled “Don’t Cry”. Part of the lyrics said this: “The challenges, we took were hard enough. They get harder now, Even when we think that we've had enough.” And life with autism is sure like that sometimes. I spoke earlier of the shell of our understanding needing to break, and in the foyer of this building, there is also a framed quote from Alfred, Lord Tennyson: “The shell must break before the bird can fly.” But whatever we’re dealing with, we don’t have to do it alone. We have each other. That’s what brought us all here today. I hope I’ve helped you understand a little more of the challenges and rewards of it all from the perspective of an autistic person. Thank you for listening.