How are people feeling? Happy - satisfied with how things are going - unsettled - stressed out - isolated - desperate. I have felt all of these, and if I see others nod their heads when I talk about it, that reminds me that I am not alone. And seeing others nod their heads reminds you that you are not alone either, and *that* is both the starting point and the ending point of why I’m here tonight. I hope that we can explore both thoughts and feelings, because I’ve found that without engaging both of those parts of me I can’t get very far. It doesn’t help me to try to figure out if my right leg or left leg is “more important” - I need them both.
Let me give you some further background about me so you’ll know where I’m coming from. (background)
There was an early indication that I had control issues: for a while as a young child I was afraid to go to sleep... (and story of guy who slept with his legs sticking up so the sky wouldn’t fall).
And I still like to do some things my own way. I live up in the mountains, and the roads get pretty curvy, even the interstates. I might like to take the shortest, smoothest path in I40 through the Pigeon River Gorge into Tennessee, but that could have consequences. To everybody else, including the Highway Patrol, I would be weaving all over the road. I could tell them, “No, you’ve got it wrong. I’m taking the best path, and the road is weaving under me!” Somehow I think that wouldn’t go over very well.
And making a career out of insisting on my own way is a sure path to misery: there is an old expression about being “driven to distraction”. While preparing for this talk, I finally realized what that phrase meant - that someone feels so stressed they try to find something - anything - to distract them, to take their mind off whatever it is. That can be different things for different people, and I’m not here to talk about all that stuff except to say that, for me, it didn’t work. Nothing changed, so whenever the distraction wore off things were exactly the same as they were. Well, sometimes they had gotten worse. But I was good and stuck: I didn’t understand the world out there, they didn’t understand me, I didn’t understand myself, and it looked like none of that could ever change. No matter how hard I tried, the only way I knew to do things just didn’t work. Even though I had some of the material stuff, I had nothing resembling peace of mind.
Part of the problem was that life just wouldn’t hold still long enough for me to figure it all out. The rules kept changing, and sometimes the goalposts would move. The hardest part was when my own thinking refused to play by the rules, and instead of problem-solving I would get swamped with worry or anger or resentment or something. Even if I had been given complete control over the situation - which I sure didn’t have - I wasn’t sure what the right thing to do *was* most of the time. So my emotions were all amped up, and sometimes they would drag the rest of me along on some wild ride which might have brought me some relief for a little while but then left me right back where I was.
All right. That’s probably more than enough to establish that things weren’t going real well, and it had been that way for a good long time. But they did start getting better, and that’s the experience - and the hope - that I can offer you this evening. I don’t know where each of you is in the process. What’s important is that we can learn from each other, that we can pool our wisdom and our strength.
One of the important things I’ve learned over the years is to pay attention to the results I get in my day-to-day life. If I do that, I discover all this feedback about the consequences of my decisions and actions, and there are lots of little chances for me to learn from whatever happens. Before, I was just trying to hang on, to endure whatever was going badly and hope things got better soon. So: I need to pay attention to the results I get, which means paying attention to my decisions and actions, which means paying attention to my own thinking - to what I tell myself. Maybe nobody else’s mind works this way, but mine likes to keep this running commentary going, describing what’s going on and lamenting stuff that’s gone wrong in the past and worrying about what might happen in the future and on and on. This came so easily to me, and was such a deeply-ingrained habit, that I didn’t even realize I was doing it. It was “just how things were”, that’s all.
But my mental model of "how the world works and what life is like" is not some cast-in-stone monolith, it is *actively maintained* by an unending stream of choices I make in my everyday life. It turns out that I was pretty good at talking myself out of some things and talking myself into others, not all of them good for me. Some of the assumptions I was making, and some of the expectations that I had, were carrying me right past places where I could’ve decided to do things differently. I would zoom right past the fork in the road and then say to myself, “Not this again! Why does it always turn out like this?”
So I had this kind of semi-automatic pilot that would take over and not notice things. Here’s a recent example: the other day I stopped at the Rescue Ministry Thrift Store in Asheville. As I pulled in, I noticed this scooter parked right at the edge of a handicapped space, blocking the wheelchair ramp... (continued ad lib)
That incident was a reminder that it’s easier for me to critique others’ behavior than it is to examine my own. But even as an autistic person - let me change that, *especially* as an autistic person - it’s important for me to monitor my behavior to see what kinds of results I’m getting and if there’s anything that needs work. Social interfacing may not come naturally, but it can be learned, and there are a lot more of you guys than there are of us, so I have to learn the neurotypical language and customs to be able to get along. That doesn’t mean I have to *become* neurotypical - that ain’t gonna happen - but I can’t expect everyone and everything to cater to my wants and wishes. That just isn’t fair.
All this talk about awareness and work and paying close attention may sound like drudgery. My experience is that it is not. One of the things which has come back for me is my sense of humor - I smile and laugh a lot more than I had for a long time, and I delight in some of the things that I run across. For instance, this email arrived in my inbox recently:
“Dear Winner
We Apologies, for the delay of your payment and all the Inconveniences and Inflict that we might have indulge you through.
However, we were having some minor problems with our payment system, which is Inexplicable, and have held us stranded and Indolent, not having the Aspiration to devote our 100% Assiduity in accrediting foreign payments.”
These good people were eager to send me nine hundred fifty thousand, two hundred and fifteen dollars. (The kindness of strangers can be heartwarming.) They sent me that offer... but what I received was a good laugh and a reminder to pay attention. See? There are lessons in everything, and it can be fun to find them. Everyday life becomes this combination of on-the-job training and treasure hunt. Some of it is very serious - every time I drive, my own actions or the actions of others could put my life at risk - but I can practice responding appropriately to whatever comes along, and learn to ignore a lot of stuff which I used to get quite upset with. Usually when folks behave badly in my vicinity it isn't really about me - they were already going to do whatever-it-was and I just happened to "wander onto the firing range". But I have also found myself helping to “set up” situations where there is conflict, and once I’ve become aware of this it’s my responsibility to do something about that pattern of behavior. A lot of stuff that “just seemed to happen to me a lot” was the result of maneuvering on my part to set the stage for it. Autistic or not, I need to be as accountable as I can for what takes place in my life, and to do the best I can to understand and cooperate with others. And there are times when I need to cooperate even though I do not understand. It becomes a matter of trust - and, for many people, a matter of faith. Not everything in life is fair, and some systems have become so adversarial that they might as well open meetings with the bell from a boxing match. Finding a way to maintain dignity, much less composure, can be very challenging. But I can - and must - trust that there are better ways to do things, even if I cannot yet see what they are. There is a place for “survival of the fittest”, certainly. 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.
By becoming willing to change, I’ve had the opportunity to find interests I never knew I had, and discover strategies for living well which I never knew existed. Here are a couple of examples: (college, and taking sociology at UNCA, and 3.97 instead of failing everything) and, from learning to think and see things from a sociological perspective, the “costume-vs-disguise” strategy for social interaction. When I interact one-on-one with others, I often find my patterns of speech and mannerisms morphing partway into theirs. For a while, I was a little concerned about this: “What’s the matter - don’t I have a personality of my own?” - but now I see it differently: I’m facilitating their communication. After all, who wouldn’t want to talk to someone pretty much like themself?
That kind of “problem-solving” can be fun to do, but some of the challenges people face in dealing with autism are not fun - in fact, they are nearly unbearable. Nice, happy examples of “doing things differently” won’t mean much unless the same principles can get us through the hardest stuff as well. So I need to spend a few minutes talking about things many folks would rather not hear about.
There is a facility in Massachusetts called the Judge Rotenberg Center (or JRC for short). Its purpose is to manage people with extremely self-injurious behavior (known as SIB), and one of the methods used involves electric shock. Recently a social-activism magazine called Mother Jones published an expose’ of the Center - a long article of the type that you might see on “60 Minutes” or “20/20”. Like the Center itself, the article was hugely controversial, and the comments section of the magazine’s website reflected this. Discussion was very heated, and both sides were firmly dug in. I described what I saw to an autism professional, and tried to make some sense of it all - this is what I wrote:
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...people in the comments section seemed to be talking past each other. It appeared that the supporters and detractors of the JRC were each starting from a subset of the larger situation and fiercely defending it, while ignoring less-tenable aspects of their positions and certainly not looking for any common ground.
The supporters were largely parents of residents, but included some staffers up to the level of the director Dr. Israel himself. Parents described how difficult and violent the at-home behavior of their (generally grown) children was, with some daring detractors to take them into their own homes and see what it was like. They also sought to downplay the electric-shock experience and to discredit the Mother Jones article. It seemed to them that the ends justified the means.
Detractors likened the shocking to torture, and pointed out the several deaths among residents. Their approach seemed to be to shame participants into stopping the use of electric shocks, as if pouring still more emotion into the cauldrons of those folks' lives would resolve anything.
Maybe it's not possible to be involved in this controversy without being drawn into one or the other of those camps. (I did see one parent who was appalled at what was done to their child at JRC and withdrew him, but that person was very much in the minority.) But each view seems to be leaving some aspects out: supporters feel that anything is preferable to the way things had been, and lash out at those seeking to curtail or close the JRC. I didn't read every word of every comment, but I don't recall seeing any calls for research into other means of behavior management. They felt that the extremity of the SIB called for "fighting fire with fire", and the JRC was their bastion of hope. There are other options beside "Stop slandering those courageous professionals!" and "*You* take 'em home!" but in the heat of battle they didn't seem to show up in the comments.
The detractors were vehement in their labeling the treatment as "torture", but that begs the question of what they would call the residents' treatment of *themselves*. Talk of human rights and violation of Constitutional amendments has its place, but the point becomes moot if the folks with the extreme SIBs extinguish their own lives, through actual death or brain-dead comas, in the meantime. Not in the "complicity" sense but in the "involved in the daily struggle" sense, I have to wonder how much blood the detractors have ever gotten on their hands. This is stuff that most people want never to hear about, let alone have to deal with.
The devices themselves sound like somewhat-lower-power Tasers, but rather than temporary immobilizers they are used as long-term behavior restraints. I have a hard time seeing this as other than "treating the symptoms" which depends on clearly-dysfunctional minds to somehow correctly learn from the painful consequences of behavior and make appropriate alterations. But what if the individual's mind isn't capable of doing this? If the pain of the SIB itself does not deter the behavior, how is adding more pain going to help?
As a layperson there is a lot I don't understand about the dynamics of all this. Andrew's SIBs were nowhere near in this league, and I've only put a hole in a wall with my head once several years ago, which hardly counts (trailer walls are relatively flimsy). Yet keeping silent by definition cannot help, and adding to the polarized din wouldn't help either. All I can see at this point is to make one suggestion: consider the SIBs as evidence of seizure activity and treat the seizures more directly. Research is underway into the use of direct brain stimulation for management of some conditions - it's still electrical current, but vastly more targeted and without the use of pain to "carry the message".
With the atmosphere so emotionally charged, it could be difficult to even try looking into this - other institutions may want nothing to do with JRC out of concern it would taint their reputations; any such proposal by JRC itself would be seized on as Orwellian by at least some of the detractors; JRC may be so emotionally invested in defending what it has been doing that it would dismiss any alternatives out-of-hand.
But JRC does not house every individual with severe SIBs. For all I know everything I have written here is superfluous because such research is already well underway. That would certainly be my preference, because it would mean we were that much closer to relieving the suffering of *everyone* involved with severe SIBs...
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One of the most important lessons I’ve learned is that I cannot always tell what the “right” thing is to have happen, and I cannot always predict how well things are going to turn out. (Andrew’s placement, and how all but one door closed)
The bad news is that I’m not smart enough to see how everything is going to turn out, and the good news is that I don’t have to be. Autism may never be completely understood, but I can still learn - as the parent of an autistic son, and as an autistic person myself - how to deal with life on life’s terms and come to an accommodation with the world around me. There is a saying which I take some comfort in: “If our minds were so simple that we could understand them, then we would be so simple that we could not understand them.” There was a time when I could have gotten very bitter, and felt very hopeless, if I had heard that. Today, I can smile and say, “Boy, howdy!” and realize there is so much that I will never understand, and feel a sense of awe rather than despair. The Big Picture is beyond me. But that’s all right. I have a place in this world, and work to do, and good people to do it with. That’s what brought me here tonight. Well, that and the cool t-shirts. So thank you all.