My Life With Asperger's

Autism Speaks, advocacy, and me

John Elder Robison — Tue, 09 Mar 2010 17:09:59 +0000

Readers of my blog know that I've been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I'm a fairly action oriented guy, and I don't like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I'd have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.

Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.

In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we - the affected individuals - should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.

I'll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it's modeled on the system developed the NIH. I feel it's a fair way to allocate limited resources and I'll surely make the most of my opportunity.

I believe it's a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone's expectations. I'm aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I'm off and running!

One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I'm involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today's autistic population.

There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they've totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That's going to be a real challenge because the views of different people on the spectrum are so widely divergent.

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization's focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.

At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it's more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.

Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from "living like anyone else." To do that, he needs help remediating some of the disabling aspects of his own autism. However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.

I believe each of us should be free to choose therapies or treatments - nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today's world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.

At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there's a lot more to be done.

There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I'll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal. Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.

As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.

How science is using magnetic energy to rewire our brains

John Elder Robison — Thu, 11 Feb 2010 02:34:17 +0000

For the past little while, I've been involved with a group of scientists and doctors who are using focused high powered magnetic fields to alter the way we think. The technique is called TMS, for Transcranial Magnetic Stimulation. And lest you think I'm hooked up with a bunch of mad scientists to make the next Frankenstein, let me reassure you that these guys are legit . . . they are from Harvard Medical School and Boston's Beth Israel Deaconess Medical Center

After two years of practice, I can almost read the magnetic stripe on your credit card by holding it up to my head.

Just kidding . . .

Or maybe not . . .

Anyway, last night I attended an event where the lead doctor and scientist, Alvaro Pascual Leone, told a rapt audience about some of the lab's new discoveries. After the presentations, they showed a video of me:

www.youtube.com/johnelderrobison

I knew they were going to show it, but I'd never seen the thing projected on a big screen and I almost felt embarrassed being up there like that. But I believe in all I said, and I believe most of all in the promise of the work Alvaro and his team is doing.

Looking at that video, I was really struck by how far I've come in the past two years. If you watched that video of me, which was made just last month, watch this one now, from two summers past. Look at the differences in me. In this earlier video, I am robotic and mechanical. My voice is different. I am stiff and rigid. It's almost a different person.

http://www.youtube.com/watch?v=BIZsYGxXHis

Compare the animation in my face, my hands, the range and prosody of my voice . . .

TMS has played a big role in the transformation you see between those two films. If we could do what's been done for me for anyone else who asked for help on the spectrum . . . it would be a parent or clinician's dream come true. And I believe we will. But not quite today. We are so close, yet also so far . . .

People write me and ask, "How can I sign my child up for this?" I am always sorry to say that clinical trials are still some years in the future, even though you can join our scientific studies now. If you'd like to talk about joining a study you can write Lindsay Oberman, Phd at loberman@bidmc.harvard.edu And you can find Lindsay here too . . .she's a fellow PT blogger.

Do join us; but keep in mind that we are engaged in scientific discovery. It's too early to promise or even expect any specific result. We're still experimenting - stimulating different area of the brain to see which ones are involved in what I call emotional intelligence. There's no way to find that out, other than by doing experiments with autistic people like me. Or you - if you join me.

If you choose to sign on, the experiments may change you, or they may not. The scientists can't make any promises. Not yet. We certainly can't set false expectations, yet what I have seen gives me great hope. I know what's in there now. Whatever happens, we are advancing science and we are on the fast track to solving this particular set of problems.

As I say in the video, some of my TMS experiences have been totally life changing. Turning on the ability to see into other people overnight is, as I describe in the video, was one of the most powerful emotional experiences of my life and the effects of that are still reverberating today.

But other TMS experiences did nothing. A few may have even made me a bit worse. That's what science is all about. You try different things, pick the winners, and sharpen your focus for the next round of research.

I talk in the video about how one stimulation turned on the ability to see into others. We all agree that's a wonderful, incredible result. But it was also unexpected. The scientists were prepared to measure a subtle temporary change in me. Instead, we got a major permanent shift.

While that's great, it also gives us pause for thought. How will me measure such changes in others? And is that stimulation produces a permanent change, we have to be very careful, because other stimulations could produce permanent changes we don't want.

That's why we have to move slowly, despite everyone wish for speed!!!! The last thing we want to do is damage someone in the quest for insight.

So I've talked of the caution and worry and where we are . . . what about the promise?

TMS has shown me a world of emotional response that I never knew existed. I have always had deep feelings, both for myself and for others. But I lacked the immediate connection to others. When the TMS has turned on "seeing," I look at another person's smile and I immediately smile back. I look at people and I just feel what they are feeling. To someone like me, it's almost magical.

It makes it very clear what I've missed all these years, and I want to make up for all that lost time. But it's also turned my life upside down, as the balance of wants and needs changed for me overnight, and I see all the people in my life in a different light.

I wish this work were as easy as it seems when we hit it right. We stimulate an area, and get a powerful result like I describe. But then we stimulate it again, and nothing much happens. Why? We don't know. We stimulate an area in me with great effect, and it does nothing for someone else in the study. We get a result on someone else, and it does something opposite for me. How? Right now, it's an extremely complex puzzle, probably the most complex puzzle I've ever known in my life.

I believe Alvaro and the scientists will unravel it, and I will be proud to make whatever contribution I can. Alvaro and his team at Harvard Medical School and Beth Israel Deaconess Medical Center are truly the best in the world.

We are going to find the answer to this puzzle. I feel very confident that we will learn how to "turn on" emotional intelligence in other people like me. In doing so, we can take away a huge component of disability from high functioning autism.

And it does not stop there. What if the mechanism that holds down emotional insight also holds down speech? What else may be affected? The possibilities for that are staggering for the more seriously impaired population.

I'm proud to be part of it, that's for sure. And I welcome any of you, if you want to join me on this journey.

The Power of Faith

John Elder Robison — Fri, 15 Jan 2010 19:51:37 +0000

Last night I attended a very moving talk by Immaculée Ilibagiza, author of Left To Tell, a memoir of the 1994 Rwandan genocide. Her talk gave me a lot to think about - faith, sprituality, and belief in a protective God in our darkest hours. Is it real, or an imagined comfort?

When I arrived I found a sellout crowd filling the auditorium at Cathedral High School in Springfield, MA. And the event itself was unique - Immaculee's talk was the most real and convincing justification for forgiveness and the foundations of Catholic faith that I've ever heard.

That's not to say I embrace Catholicism - I'm not a member of any formal church - but her presentation was very powerful and well reasoned. Immaculee's event opened with a short documentary film that set the stage with what happened in Rwanda in 1994.

The nightmare began with the assassination of the president that spring. Within hours, the ruling Hutus began killing the country's Tutsi citizens and Tutsi sympathizers. Over a three month period between 500,000 and 1,000,000 people were killed. Some estimates say 20% of the tiny country's population was murdered in this killing spree. The victims included Immaculee's parents, brothers, and extended family.   She talked of her experience in that unimaginable time.

Immaculee was hidden and protected by a local pastor, who hid her for 91 days in a 3 by 4 foot bathroom with six other women. When they emerged from hiding, the women had lost half their body weight but they were still alive, a miracle she attributed to divine protection.

She explained how faith came to her in the bathroom. At first, her confinement was merely uncomfortable, and hard to believe. Then it got more uncomfortable. Finally, it became unbearable. That's when a Hutu mob arrived to begin a house to house search for Tutsi to kill. They were armed with grenades, machetes, and spears.

At that point, she says, she began to pray. But she was uncertain - was anyone listening? She asked God to show himself if he was there. Meanwhile, the mob spent several hours searching the pastor's grounds. They looked through the front of the house, under the shrubs, in the outbuildings, and even on the roof. For some reason - she attributes this to God - they turned away from the locked door at the rear of the house.

She said she heard two voices in her mind as the mob searched the house. One said, "You have no chance. Open the door and get it over with." The other voice said, "Be calm, and I will protect you." Immaculee said she was very tempted to open the door, and she was terrified, but she stayed quiet. That first search seems to have solidified her faith in a protective God in a way that her earlier religious education had not.

That strong faith sustained her for three months in the bathroom, until the violence ended and she walked out into daylight to see a village that was barely recognizable - littered with decaying bodies being eaten by wild dogs.

She began to teach herself English from the bible, saying the words in her mind since she could not say them aloud for fear of discovery. She relied heavily on the Book of Job and the Lord's Prayer, but there was a problem. The Prayer speaks of forgiveness, but she was not ready to forgive the killers at first. She spoke at length how she arrived at a point of forgiveness and found herself able to accept the totality of the prayer.

Forgiveness brought her a feeling of release and freedom, she said. I can understand that. I know from my own life how forgiveness can set you free. There is indeed a deep good feeling that comes from forgiving and letting go.

But is forgiveness unlimited in scope and applicability? I don't think it is. I can honor and admire Immaculée's letting go and forgiving. History is full of priests and ordinary people who have forgiven their tormentors and prayed for them to see the light and change their evil ways right to their awful ends. Such people are seen as giving their lives for a noble principle or belief and they are held out as role models for the rest of us.

But ultimately, evil is put down at the point of a sword, not through the good words of the preacher. Preachers can have a powerful impact, but sometimes the evil runs too deep, and overmatching force offers the only solution. The horrors of Rwanda, like all other such situations throughout history, were resolved and enforced with military might.

To me, that defines the limit of forgiveness. At some point, a person who is purposeful and evil becomes an unacceptable threat. The threat may be to me individually or to society at large. To forgive and pray for such a person in the hope that they may change while knowing they have a long and continuing history of evil becomes a harmful act as long as that person is allowed to remain on the loose.

Some would say, who are you to judge? My answer is that I don't presume to judge unless the choice is forced upon me. If a person approached me with a knife in an alley, I would rather respond with force and face the consequences - moral and legal - of firm self defense rather than pray and take my chances with an unknown but certainly malign force.

I can forgive the drug addict who breaks into my house when I am gone. But if he comes in the window at night when I am home, I'm probably going to shoot him before the question of forgiveness can be raised.

When someone demonstrates a proclivity for killing children, society's primary goal should be to remove him permanently from our presence. Whether he should be put to death or caged forever is a subject for another discussion but I submit that forgiveness is an abstract that has no place in that conversation. However, forgiveness has a place to help victims heal. I believe those of us who are not yet victims have a duty to act preventatively for our own good and that of our fellows.

I suppose you might say I believe in acting firmly, and forgiving when the aggressor is on the ground. Removal of threat comes first to me; forgiveness comes later. I know that's not the priest's view, but I am not a priest.

Immaculee's message was very powerful and I could see that it resonated with many in the audience. Clearly, if she could survive that reality, the challenges many of us face here in America are trivial in comparison however awful they may feel to us at the moment.

I thought about her words alone, and in the context of my own life. Her explanation of finding absolute faith in a protective and caring God, and following a path to forgiveness and freedom, makes perfect sense once you accept the idea that there is a God to protect you.

That's where she and I differ.

While she has a wonderful story of salvation, and she lived to tell it, I am sure there were countless people just like her praying for the same salvation, yet they were mercilessly put to death at that same time.

Why would a God - if indeed there is such a being - save her, and allow the others to die?

I can accept the theological arguments that there is both terrible cruelty and great kindness in the world. But I have a hard time believing in a protective God as applied to any of us individuals because I can see no evidence of a pattern of salvation. It seems just random. Or maybe it's planning . . . after all, I have long believed fortune favors those who prepare for it.

I have never been able to get past that stumbling block; that need to blindly believe - in my own life. I think back to times I was in grave danger, and what I did. There were times I prayed to live another day, and some would argue that it worked because I am still here. However, I always felt I am here because I kept going; I felt like salvation came from my own effort or perhaps luck more than divine protection. When I push myself beyond the limits and I come out the other side, it seems natural to believe my survival was a result of my own effort and my damaged but recovering body is a testament to that.

I can see how it would feel different to watch an external threat approach, come close, and then recede. Seeing the soldiers carefully search the house, and then turn away from her locked door is a good example. If I had been there, and the only action I took at that time was to pray, I might well believe (as she did) that God intervened. But nothing like that has ever happened to me.

I have heard that people experience such feelings in the face of certain diseases like cancer, at times when they are in retreat. I suppose that's something we all face at the end, and maybe I will come to believe then.

Until then how could I be expected to believe in a higher power? I don't know. I know many people do believe, but I don't know where their faith comes from. Should I believe? I don't even know the answer to that.

I certainly got a very good sense of why Immacule believes, and what that belief has done for her. But where do I go from there to apply her words to my life? Steps 2, 3, and 4 in her journey all depend upon acceptance in step 1, and I don't see how to achieve that for myself, or even if I should try.

Until then, I believe I continue to live a reasonably moral life. I do my best not to hurt others, and I practice kindness whenever I can. I even receive regular feedback from others that suggests I am succeeding at this. I reach out and help people, through my writing, my workshops, and in daily life. I do the best I can. I believe it's possible do good even though I am uncertain about the questions of higher powers and divine protection or salvation.

Do I question God because I'm autistic and I can't sense what's obvious to others? Or do I question Him because I'm logical and the required leaps of faith defy logic? Am I right, or am I ignorant? How can I know?

Is Technology Making Us Dumber?

John Elder Robison — Mon, 30 Nov 2009 21:36:10 +0000

I can still remember how impressed I was with my father's academic friends. Whatever I said to them, they always had an answer. I'd point to a ship in my book, and they'd tell me about the Bremen, the Lusitania, and the United States . . . all the great passenger liners. I'd talk about elephants and they answered with stories of Africa, Asia, Hannibal's warriors and the Indian Maharajahs. I was so impressed with their vast knowledge.

I read books all day long, and it seemed like I didn't know a fraction of what those grownups knew. Of course, they were thirty and I was seven, but I wasn't old enough to take subtle points like that into account.

My grandparents didn't know nearly as much. I'd ask my grandmother about helicopters, and she'd just say, Honey child, I don't know a thing about helicopters! When I asked why she didn't know, my grandfather had the answer. Those college people know a little about everything, but nothing about anything. I doubt any of them could plow a field!

I never did get the chance to see if my parents' friends could plow fields. But as I got older, I realized folks who could talk intelligently about many topics were pretty rare, and the ones who knew more than the most superficial tidbits were rarer still. I was just lucky to have a bunch of them in my life early on. So it was a neat thing, finding new people like that as I got older.

By the time I was eighteen, I knew a few good places to look for people who knew something about everything. The Umass Science Fiction Society, for example, was full of geeks with an overabundance of esoteric knowledge. As time passed, I found more and more pockets of arcane understanding throughout the Pioneer Valley, where I lived.

The knowledgeable people I found were always rare and special. Consequently, I grew up believing knowledge was something to be treasured. Not anymore. Any fool with a Blackberry or Iphone can look up life's answers at the drop of a hat, provided there's cell phone service. So where does that leave the knowledgeable geeks of yesterday? I guess what was special has become ordinary, at least on first glance.

What happened? Did the pocket Internet make everyone smarter? Or does it just facilitate snappy comebacks, with a sixty-second web browser delay? I used to think the Internet was a tide that lifted all boats, knowledge wise, but now I wonder if the opposite is true. I think the Internet and information technology in general makes us dumber, in some key ways.

When I was a kid, you had to actually memorize and know the capitals of foreign countries if you wanted to talk geography. And you never knew when that might happen. Even today, I know Ulan Bator is the capital of Mongolia, and Quito is the capital of Ecuador. I can point them out on a map.

So what, today's young people say. The iphone will tell you more about Ulan Bator in sixty seconds than I could possibly remember. That's true, but by relying on the computer, we stop training out minds, and we stop filling our memory banks. By doing so, I believe we diminish our ability to solve life's problems unaided, and we become more and more dependent on machines. When the machines give us answers, we seem superficially smarter, but we really are dumber, because we're not building the networks in our brains to solve a whole host of problems.

Want another example of this? Think navigation. I went my whole life looking at maps and finding my way. I have a long, long history of reaching my destinations, whether on foot, by boat, or by car. I looked at a map, related it to the world around me, and found my way. All too often, navigation today is handed off to a machine. Many motorists can't make sense of a basic road map, or estimate the distance between two points on a printed page. They are lost if their machine loses touch with the satellites.

Most of the time, technology works as it should. People get to their destinations faster thanks to computers. But people who rely on machines have given up something vital yet intangible. They've lost the ability to think it through a navigation problem themselves. They have become slaves to machines out of intellectual laziness, and the laziness makes them less smart. The brain wiring that solves navigation problems allows us to solve other problems too. Computers don't have that flexibility, and neither do we when we abdicate our thinking to machines.

I think this point is lost on many young people today. After all, if they have not developed certain processing abilities in their minds, how can they know what they are missing? I know, because I see what I lose when I rely on technology and it fails. I think of my frustration when my car gets lost, and I recall all those times when I solved my own problems and found my own way, uneventfully albeit a bit slower.

For many people, web browsing has replaced book reading. Recent studies suggest that their attention spans are reduced as a result. When we rely on a computer to look up facts, instead of our own memory, the price may not be obvious. But I believe it's there, and it real.

It's a point to ponder for sure. Easy answers aren't always free.

What is smart?

John Elder Robison — Fri, 06 Nov 2009 01:07:53 +0000

"He's such a bright little boy!" My mother and her friends said things like that all the time, as they pointed to me when they thought I wasn't paying attention.

Now that I'm grown, I can let them in on a secret: There was never a time when I didn't pay attention to grownups as a kid. I watched them really close, all the time. I may not have understood everything I heard, but I surely took it all in.

But what did it mean? I got a new bike, and my mother said, "What a pretty red bicycle!" Everyone who saw it said the same thing. It was a nice, red bike. The attributes didn't change. It was always a bike, and always red. No one ever called it blue or green, because colors were absolute. Something was either red or green; it didn't change at your whim or mine.

Unfortunately, phrases like, "Bright little boy," didn't work that way. I went to school as a "bright boy" only to have bigger kids say, "You're a retard!" Grownups got in their kicks with lines like, "How can you act so stupid?"

I may not have known much in elementary school, but I knew bright, retarded, and stupid did not go together.

Something was wrong. I began watching those grownups who said I was so smart a little closer. I noticed something pretty quick: When grownups talked about kids, they were always calling them clever and smart, and the other moms always agreed. No one ever said, "John Elder is really smart, but Freddie is dumb as a rock!"

The grownups said, "John Elder is smart," and then Freddie crawled into the cage, and they also said, "Freddie is so clever and smart!" To moms, we were all cute and smart and clever. Yet I'd go to school, and lots of kids said Freddie was dumb. None of them said he was smart.

So who was right? You heard moms call kids smart, and they never called kids dumb. Yet I knew you couldn't have smart kids without having less-smart ones too. If we were all smart, we'd be the same, and there would be no such thing as smart or not.

So I learned to discount what the moms said. I did the same for most of the kids who called me a retard, because I realized they called everyone they didn't like a retard. Also, after close observation I began to doubt the mental prowess of the name callers. If they were subnormal, how could they possibly diagnose me?

After a lot of watching and thinking, I finally figured out what was happening. People said I was smart because they thought I sounded smart. Sound was the giveaway. My choice of words announced my intelligence, or so they thought.

It took a long time for me to figure that out because it didn't work that way for me; I had to deduce what was going on from observation. You see, I could never really tell who was smarter even when I knew someone pretty well. Sure, I knew who had better language skills. Me. But so what?

I have always spoken really precisely and clearly, and that gives listeners the impression that I am really smart. But that didn't make me smarter. Butch Fornier talked rough, but he was an artist with carburetors in auto shop. I could talk circles around Butch, but when it came to practical skill, he had me whupped. So I knew how deceptive fancy words could be.

Pretty is something you see. Stinky is something you smell. Smart is something you hear. That's how it works for most people. What a disappointment! I always thought "smart" was an absolute, and maybe it is on an IQ test. But in the popular perception, smart is just as much in the eye of the beholder as beauty and body odor.

People who listened to me had no way to know if I was really smart or not. They didn't say, "Quick now! Multiply 4,722 by 381. What's the answer?" They never said, "So you think you're smart . . . who's the King of Mongolia?" Those kinds of questions might have given people some real insight into my intelligence. But they never asked. They just listened to me talk, and jumped to a conclusion.

They were making a big mistake, as it turned out.

I did have really good speaking skills. That part of my brain is "smart." But there's more to being smart than the ability to talk a good game. There's also math smarts, history smarts, and smarts for everything else they teach in school. And finally, one big smarts is social smarts. That's the ability to figure out other people, and what they really mean when they say and do things. Unfortunately, I am pretty dumb in that area.

When I was twelve, I had the language skill of a college professor and the social skill of a toddler. That was a formula for disaster, and it totally explains all those people who cried out, "How can you be so smart and do such dumb things?"

Today I see how exceptional language skill can combine with poor social skill to create a terrible invisible handicap. A person whose social skills and language are poor is cut some slack, because he sounds like he needs some help. A person like me is torn to pieces because I sound so good that I'm held to an exceptionally high standard; one I often fail to meet. Quite a few of my fellow Aspergians share this predicament.

And the worst part is . . . I often don't even know when I've made a gaffe, because that social blindness is central to the whole thing.

That's something to ponder the next time a "smart kid" does something "really dumb" in your presence.

One more way to be rude

John Elder Robison — Wed, 21 Oct 2009 19:00:25 +0000

Thanks to modern technology, I now have one more way to seem rude while actually paying incredibly close attention. I made this discovery when my friend Jan invited me to the annual meeting of the Connecticut River Watershed Council. Come on, she said, It will be interesting. I'm feeling more social these days so I decided to go . . .

The first part was kind of neat, because free food was involved. We started on a big outdoor patio that contained several tables covered with edible treats. I didn't know any of the people except Jan, but I did recognize chocolate strawberries when I saw them, so I went at it. A few minutes later I was sated and it was time to go inside to listen to the speakers. Five years ago I'd never have gone near such a thing, but now I resolved to give it a try. I went in and sat down with Jan, her friend, and a table full of strangers.

I nodded politely and sat fairly still as I waited for the program to begin. I can do that, as long as I don't have to wait too long. Within a few minutes, the crowd settled down and things got going. I wasn't sure what I was going to hear; I just hoped it would be interesting. I was not disappointed.

The first speaker worked for an outfit called Covanta. I didn't know who or what Covanta was, but I paid attention as she began to speak. She said her firm was in the business of converting trash to energy. How do they do that, I wondered? In the past I'd have sat there and listened and pondered, but now I can be pro-active. I whipped out the iphone and went on the hunt.

The speaker's voice faded to the background as I began reading, though I looked up from time to time to make sure she and I were still in the same places.

My first search took me to Covanta's website, where I learned who they were and what they do. Moments later I was reading about the Bristol trash-to-electricity facility. Being a geek, I was captivated by the descriptions of the burner and boiler installations. That sent me on yet another Google search. . .

As I searched at 100MPH the speaker plodded along at a walking pace. I continued to glance up, but very little was happening. The speaker droned on, and the audience sat quietly. I was quiet too, but inside my mind was churning. Luckily the mental clatter was contained by the flesh around my head and ears.

I sifted through her spoken words for phrases to Google on the iphone. Within moments a description of the latest high efficiency burners was waiting for me on the screen. I read it and had a new appreciation for Covanta, a company that I'd never even heard of a few minutes before.

I looked back up in plenty of time for the speaker's concluding remarks. When the time came for applause I joined in as enthusiastically as anyone else, fortified by my enhanced understanding.

That's when I realized how my tablemates perceived my behavior. That's awfully rude, to just ignore the speaker and work on your computer. But is that really what happened? I think not. The speaker was there as a representative of Covanta, and her job was to inform the public about her company and make them feel good about it. I'll bet she succeeded better with me than most anyone else in the room, thanks to my little iphone.

I'll give you some examples . . .
I learned what Covanta does, and where they are based.
I now know what a waterfall furnace is.
I know Covanta's Hartford plant runs steam turbines at 880psi
I am even familiar with the inspection standards for boilers that run at those pressures.

Do you know any of those things? And how many other people in the room got that out of her talk? I would argue that our speaker achieved her goals better with me than with anyone else there (unless there was another geek with an iphone.)

I have always gotten restless in situations like that because my mind moves faster than a speaker's voice. Knowing that, I don't usually go to presentations. But the iphone changed everything for me. Instead of sitting there with questions in my mind, I was free to search and explore while generally guided by the speaker's words. It was great.

If the purpose of a lecture is to impart knowledge, iphone enhanced listening is a great success. Unfortunately, the other people in the room don't see it that way. They see me looking at a pocket computer and imagine all sorts of things. Some believe I'm looking at Russian Dream Girls. Others think I'm playing Donkey Kong. No one guessed the truth.

A few people in the crowd might have seen me and thought . . . he's acting a bit autistic. And maybe I was. But if that's true, it's catchy. More and more people are bringing iphones and similar devices to events, and they are fast becoming one more way in which technology is making all of us act a little more autistic at times in exchange for enhanced productivity.

Every time we answer questions with a pocket browser we miss the chance to raise our hands and engage another human. Every time we write an email we lose out on a face to face conversation. At the same time, the benefits of "electronic augmentation" are undeniable. But where does it lead?

The "cure" for autism, and the fight over it.

John Elder Robison — Mon, 12 Oct 2009 13:58:02 +0000

Our society is confronting many serious, chronic medical issues, including AIDS, diabetes, obesity, cancer, Alzheimer's, MS, heart disease, and autism. What do all those conditions have in common? Every one is something you live with for a long period of time; in some cases all your life. Furthermore, every one has one or more strong advocacy organizations who speak for people affected by the condition.

What makes autism unique?

I'll tell you. Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups. Why is that, and what does it mean? The recent Autism Speaks video debacle and the continuing controversy over neurodiversity and a "cure" makes me think this is something worth talking about.

The problem starts with autism itself, and how people see it. Unlike cancer and most other medical issues in the news, autism is a stable neurological difference. It's not a progressive disease. At the same time, autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The "High Functioning" autistic group says, "We don't need to be cured. We just need tolerance and understanding."

The Highly Impaired group says, "Enough with the understanding! We need some cures, fast!"

Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their very real disabilities.

Unfortunately, each person who's touched by autism thinks his autism experience is representative of everyone else's. And why wouldn't he? That's how it is with most other medical conditions. Within reason, my broken leg is like yours. So's my flu, or even my bypass operation, should I ever have one. Some of us have complications and we do better or worse, but there is indeed a common shared experience.

Autism, by virtue of its diversity, is totally different. Unless he makes a point to study nonverbal autistic life, a high functioning Aspergian will have no concept of life at the other end of the spectrum. And of course the opposite is true too. This misunderstanding is compounded by autism itself, as one characteristic of our condition is an inability to put oneself in another person's shoes. So conflict is bound to arise.

And then there's the conflict with the parents. They say, "My kid has this terrible condition," and high functioning adults see that as an indictment of themselves. After all, they live with the so-called "terrible condition" every day.

What can we do to resolve this strife? I have a fairly simple solution.

First, stop talking about a "cure for autism," and, "getting rid of autism."

Second, talk about finding fixes for specific components of autistic disability, like speech impairment.

We should all be able to agree that the ability to talk is a good human trait. So is the ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that therapies that allow autistic people who couldn't do those things in the past to do them in the future are good.

It seems to me that one change in focus could go a long way to resolve the controversy.

The other thing we all need is some tolerance for differing views. For example, I may see some benefits and some disabilities to my own high functioning autism. There are other people who see zero benefit and much handicap to autism in themselves. Both of us deserve the right to hold our differing opinions and live our lives in peace. There is no reason that can't happen, though you'd never know it to read many of today's blogs and articles on the topic.

I certainly recognize the solution is more than my simple two steps. There are still some major ethical questions remaining. For example, who should decide if a treatment or therapy should be given to a person who can't advocate for himself? Those are the issues our advocacy groups should tackle together, rather than fighting with each other.

There are also some emotion-charged controversies like the vaccine question that can only be solved by the advance of science. Of course, both sides will say, "The question is solved, my way!" but the lack of consensus suggests it's far from resolution. That said, it does not have to tear the community apart the way it does today.

When you count the autistic population, plus out families, teachers, and caregivers, there are many millions of people affected by autism in the United States alone. Most of us are just individuals, with little ability to advocate for ourselves regionally or nationally or in some cases, even locally. We NEED strong advocacy organizations to play this role; organizations we can embrace and get behind.

Can today's autism advocacy groups embrace this concept? Time will tell.

Until they do, I am sorry to say, none of them speak for me. I know I am not alone in that somewhat cynical view. And that's a sorry state of affairs for advocacy groups who are supposed to look out for the interests of people on the spectrum.

Is the Bible obsolete?

John Elder Robison — Sun, 27 Sep 2009 20:16:28 +0000

In medieval times, people managed by decree and threat. The King made a proclamation, and said, "Fear this, and tremblingly obey!" You ignored the King and his nobles at your peril, as most anything could be a capital offense. Stealing a loaf of bread, or murdering your neighbor - either could send you to the gallows. In a world like that, the bible's threats and dogma seemed right in line with the way of the world.

Today, things are different. Managers manage by motivation. Instead of saying, "Do this or we will have you executed," they think of ways to make people want to do things. Bosses talk endlessly about self-motivation and actualization. The goal today is to make people want to work for The Man. Parents have even jumped on the bandwagon. Today's kids must want to cooperate. Threats and spankings are out the window.

It seems to work. People stay at work sixty hours a week at times, with no threat of transportation or execution. Some would say we have lifted behavior or at least motivation to a higher plane. Others would say its just brainwashing but that's a subject for another post.

The fact remains, threat and dogma are passé when it comes to management in most of the Enlightened Western World. But through it all, the Bible has remained the same. Do as I say, or feel the wrath of a vengeful God.

I didn't give that dichotomy much thought until speaking with Boston University psychology professor Catherine Caldwell-Harris. At a talk last winter, she said, "Why do you think Aspergians tend to reject the Bible and religion more often?"

"More often than what," I asked? She directed me to Asperger sites Wrong Planet and Aspies For Freedom, where the prevailing sentiment when spirituality is discussed is indeed the rejection of Western religion. I got that impression from a quick perusal of the forums, but she knows it for sure, based on statistical analysis.

She's done some follow on studies where people are interviewed in more depth; in fact she has one here that you can check out and participate in:
http://www.surveymonkey.com/s.aspx?sm=7eHrc2JY6Wj8_2b7A_2faRzrag_...

The studies so far suggest that high functioning people on the spectrum - those who participate in studies like hers and online in forums - are significantly more likely to reject religion than nypicals. I meet quite a few people myself, and my observation tends to confirm Catherine's. But what does that mean? I've thought about that question quite a bit.

I'm not a follower of any traditional American church. Yet I consider myself a spiritual person. Furthermore, I think I have a good and solid moral sense, and a reasonable grasp of right and wrong and how to behave. I know from experience that many adult Americans would describe themselves the same way, be they Aspergian or nypical.

Do I reject traditional American religion? Upon reflection, I guess I do. I reject the "Do what we say or you'll suffer damnation!" I don't need a priest's threats to stop me from looting the neighbor's house and ravaging his females. The idea that I'd go to a church to hear those kind of threats just isn't very appealing, no matter how subtle they may be. When you add a priest with his hand in your pocket and all the diddling scandals certain churches have, the picture is even worse.

The reason I do not go looting and pillaging is that I believe it's morally wrong to do so. Since I already believe that, threats will do nothing more than annoy me. And that's not all. The bible is full of passages that say, in essence, "Believe this or else!" Why? I'm okay about believing many things, but I want a more solid foundation than, "Because I say so." I had a problem with my father saying that forty years ago, and I have problems when preachers say it today.

The more I thought about it, the more I realized rejection of organized religion is very different from rejection of spirituality or the concept of a God. I began to wonder . . . do Aspergians like me tend to reject religions like Catholicism because we are exceedingly logical people, and the Church's threats and dogma are anything but?

We reject lots of things in life because they aren't logical. Why not the bible? Why indeed. Maybe we Aspergians are just on the cutting edge here, because of our predisposition toward logicality.

I wonder if the time has come to update the language of the bible to reflect modern times and customs. Perhaps if we toned down the threats, more people would embrace it. Maybe if we added a little more logic, it would find wider acceptance. We've done that with every management tome, and most parenting tomes. What is the bible if not the pre-eminent "how to behave" manual for society. When all the lesser works have been revised should we not revise this one too?

Or maybe I'm just nuts, and it's perfectly good the way it is to 99% of the world. What do you think?

I will say this. I've visited a number of churches, in small towns and inner cities. This is what I have seen: The rougher and meaner the environment, the more the successful and popular preachers focus on practical life matters. Threat and dogma are virtually ignored in favor of logical sensible living advice. Are they onto something, those inner city Baptists?

Which is easier – being a genius or being retarded?

John Elder Robison — Mon, 03 Aug 2009 14:24:13 +0000

What is it like to look at the world, knowing one is isolated by disability, wondering how it would feel to have a job, a girlfriend, or a family? What is it like to be less disabled, to have those things, lose them, and be crushed by depression and despair? Is one role better than the other?

Some of my recent stories here and on my regular blog ( jerobison.blogspot.com ) have touched upon the question of autism, disability, and the relative impairment or position of people at different points on the spectrum.

When reading the comments to my earlier posts I get the feeling that certain people with greater autistic impairment than me feel that their "less impaired" brethren - me included - somehow have an easier life. I don't agree with that.

Several commenter's compared levels of disability in the world of friendships. One person said, "I have never even had a girlfriend," and the tone of his remark was such that I was made to think, Imagine how much that hurts.

I didn't say anything at the time but I thought about his words and my own life. The memory of my time at Amherst Junior High is still as clear as yesterday in my mind.

I remember exactly how it felt to look at couples holding hands in the hallways, while wishing I had a girlfriend. I'd see them walking past, smiling and talking, and I'd feel so terribly alone. I'd look down at my own empty hands and ask, what's wrong with me? The pain of those memories is still sharp, thirty-some years later.

It was a big step up from the loneliness of grade school, which until then was the worst pain I'd known. At age six, being called a retard had hurt a lot. But at age thirteen, being totally ignored by couples and by girls in particular hurt even more.

It's hard to be alone when you're surrounded by couples. My solution was to retreat into books, machinery, and places where couples did not intrude. There were no couples in the electronics lab, or the auto shop. Most of the places I hung out, there were not even any people at all.

That was my method of coping for many years. I did not know how to begin a romantic relationship, so I hid. When I did pop into view, I gave my autistic mannerisms free reign to drive away any potential suitors. It worked. Romance did not have much place in my high school experience, with the exception of Cheryl, who led me on just to toy with me. That experience also remains with me today.

That's the place some people on the spectrum remain at as adults, compounded by years of experience of the same romantic failure. Some distract themselves by immersion in other interests, while others dwell on why something never worked out.

I remember that place well, because it was my own life until age eighteen or so.

Then I fell in love, for the first of several times. When it was good, I was so happy. Proud, too, to have such a pretty, vivacious girl be interested in me! Words cannot express how good it felt to leave my lonely and solitary existence behind. Unfortunately, it didn't always last.

"I just can't do this anymore. I can't keep seeing you." Her words came out of the blue to shatter my world. I knew there were issues, to be sure, but like all Aspergians I am very tied to routine. I'm very slow to change, sometimes seeming to discuss things endlessly before making a change. So her sudden decision to dump me came as a total shock. One day I was happy and dreaming of a future. The next day, it all lay shattered in the dust. The pain was far, far worse than anything I'd ever known. I read those trite words, better to have loved and lost, than to have never loved at all, and I wondered what planet that writer lived on.

When I learned about Asperger's one of the things that struck me false was the talk about empathy and emotion, and how people like me supposedly lack those feelings. Anyone who could see into my mind in that moment of darkness and torment could not fail to realize how totally wrong those statements were.

Yet I didn't show it. I was dying inside, but to the rest of the world, I was the same person as always. Inside, my heart was pounding and my mind was racing in ever tightening circles on a descent into darkness. But I gave no sign of the torment within. Can't you talk about it, people would ask me today? I don't quite know how to answer. Even now, in middle age, the sting of childhood rejection still lingers. I could go through that experience now, at 51, and I might well react just the same as I did at 21.

As I get older I seem more polished and sociable, but given enough stress, the old autistic behaviors rise to the fore. People say I have a childlike innocence, which is nice at times. But at other times, I can revert to a wounded and hurt little boy, and that's not good at all. I close down and suffer in silence.

There is little to help that kind of pain. Today, life experience tells me that things will usually get better. But does that message always get through?

When I read about how lucky I am to have met a girlfriend, found a wife, had a kid . . . I realize those things came at a price. They weren't free. It's true that the greatest joys I have felt have been with the people closest to me, but at the same time they have caused me the sharpest and deepest pain I have ever known.

So what would I say to those who feel their disability has prevented them from experiencing such things? There's no free lunch. In the end, we all want what we don't have. But does getting it make us happier? There's no evidence that it does.

I'll offer one stark piece of evidence. There is virtually no incidence of suicide among retarded or seriously impaired people. At the other end of the spectrum, history is filled with examples of geniuses and highly creative people who took their own lives in moments of despair.

Greater functionality may bring bigger "ups." But it also brings bigger downs. There is always a price, and sometimes it can be very high.

Depression and pain affect people at all levels of society, with and without disability. The idea that some people with autism are less disabled and therefore suffer less is simply wrong. We all suffer to the same extent that we experience joy. Some of us may feel those things in more muted ways, but even if we do, it's our life and it's all we know.

My pain is my pain, just as yours belongs to you. The fact that you think mine should be less because I am higher functioning does not make it any less real to me.

It's one more reason that we should show tolerance and compassion.

Why can't we all get along?

John Elder Robison — Tue, 21 Jul 2009 18:34:43 +0000

Just this morning I was reading a post on Autism's Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.

His motto is, We don't want no stinkin neurodiversity! We need a cure.

In my writing, I have said, I don't need a cure; I just want compassion and understanding.

Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently.

Too much of anything isn't good for you. Maybe a touch of autism makes some of us creative, and gives us advantages that outweigh the components of disability. However, the fact that I am high functioning and only mildly impaired does not mean that all autistic people are like me.

I do not have speech impairment. In fact, I have unusually good speech. I don't have digestive issues, or growth limitations, or other autism-related health problems. Yet autism has still shaped my life, in many fundamental ways, and that continues today.

I have participated in several experimental studies that measured brain parameters that correlate with autism, and I match people with far greater impairment in many key ways. So I may be less impaired but our brains still share certain essential differences.

That tells me that folks like me and Jonathan may have a lot in common neurologically, but our thinking may be miles apart based on the different ways autism has shaped our lives. When Jonathan describes the way autism affects him, he sees many disabilities and few if any offsetting gifts. I see some real components of disability in myself, but also some great gifts.

Seen from my perspective, Jonathan's desire to cure his disability is perfectly reasonable. At the same time, I hope he can agree that my desire to live as I am and seek acceptance is reasonable too.

I look at mothers whose kids are on the spectrum and see the same thing. Kim Stagliano wants more than almost anything else for her kids to talk. She might call that a cure. Kyra Anderson is more like me, in that she wants to help her child fit in and find acceptance.

Samwick writes in to my blog, taking me to task for portraying Asperger's as less of a disability that it is, in his eyes. Yet I don't want to understate the potential for growth we all have. And my stories do reflect my own life on the spectrum.

All of us in the autism community should keep in mind the tremendous range of impact autism can have. When one person talks of a cure, and someone else talks neurodversity, we should recognize that those individuals may be coming from very different places.

One man's cure seems like another's poison.

Autism is a condition that can leave one person totally disabled while making another an eccentric genius. The problem is, the totally disabled can't speak for themselves, and high functioning people like me can make autism appear less serious than it is, for those more impaired individuals.

When the less informed public looks at me, and thinks, "There goes a successful guy with autism," it may create the impression that anyone on the spectrum can be equally functional. That is simply not true. Everyone can grow and improve, but some people always go farther than others.

If a person has serious speech difficulty as a consequence of autism he's going to have a much harder time making it in American society. If he does not progress as far as someone else, that does not mean he's lazy or stupid.

It's very hard to maintain a balance between recognizing latent potential in people, giving them hope, while still being cognizant of the fundamental limitations autism may impose.

I just wish people could discuss these issues without the bitterness and hostility that breaks out.