Look Me In The Eye

I can never forget I'm different, no matter how I try . . .

noreply@blogger.com (John Robison) — Tue, 04 Mar 2025 13:57:00 +0000

This morning I was at the gym as part of my twice-weekly effort to halt my inevitable decline. As I lay on the floor, twisting myself in knots, two people were talking about their respective travels. One was just back from Virginia and Arizona after touring two schools with her son. The other had been to Louisiana and Pennsylvania for the same thing, and they compared their journeys and the t-shirts and other swag they returned home with.

One asked the other how her kid felt going across the country for college. The other talked about how she felt with all the traveling back and forth. On my back, on the floor, I considered that I had no experience whatever like theirs.

I’ve been to all those states and more, visiting their universities to talk about neurodiversity and autism. But I never had the student experience. I never left home for a dorm, never experienced class as a student, and when I got older and had a kid, he never did those things either.

It’s not that we are uneducated; it’s just that neither of us needed a college to get there. The idea of spending four, six, or eight years studying something I want to do is somewhat unfathomable. I have never been described as incompetent or unskilled at anything I’ve done, even as I taught myself what I needed to know on the fly.

I realized that is one more example of how my different brain sets me apart from others, that I never had those college experiences either as a student or as a parent. Perhaps it was my social disability – which was significant early in my life – that kept me out of school. There was also the small matter of flunking out of high school – which I now attribute to the school’s focus on “doing things the way they teach” and requiring me to “show my work.” Correct answers alone were never enough.

Whatever it was – probably a combination of things – I abandoned the school track for training myself on the fly. Time has proven that to have been a winning strategy for me. But it also isolates me, at times like this morning. I had nothing to add to that conversation; all I could do is listen and ponder how different that was from my life.

No matter how successful I am; no matter how many people like me or love me, I am reminded at moments like those that I am always different, and it makes me feel a bit sad.

I didn’t choose to be how I am; it’s the only life I know.

The Future of Trades

noreply@blogger.com (John Robison) — Sun, 12 Nov 2023 16:35:00 +0000

Prior to the rise of the Internet, people found things through advertising, or referrals from trusted individuals. The more important the thing, the more likely someone was to seek a trusted referral. A prospective homebuyer might follow advice from a friend or acquaintance who recently bought a home. That might lead to the selection of a realtor, who in turn would suggest a home inspector. When they identified needed work, contractors recommended by the realtor or inspector would perform it.

Recommendations for a dentist, a restaurant, or a car mechanic all came through similar channels. In most instances, no compensation was offered or expected for the referral. People felt comfortable following the advice of others they’d come to trust.

During the 20^th century the rise of cities and increased mobility led to a breakdown of personal connections. Someone in a small town might know people to advise them on most anything they could want or need in town. The same person, transplanted to Manhattan or Chicago, would not have such a network. Where would they turn?

The Internet evolved to provide an answer. Today, anything we want is offered online. But how do you know who to trust? The internet has existed long enough to replace “community trust” with “good online reviews” for a whole generation. That shift has created great opportunity for a small group of web-based entrepreneurs and their private equity backers, at the expense of much of the general population.

The replacement of trusted personal recommendations with online reviews has led to the proliferation of junk at every level of commerce. Cars are a good example. In any community, sellers exist to provide cars at all levels. New car dealers provide the best cars to affluent people, and they also sell used cars to slightly less affluent folks. Other used car dealers provided progressively more worn cars, at progressively lower prices, to less prosperous people with lower expectations.

While the customers of a Cadillac dealership and a discount car lot might be totally different, both dealers were aware of their place in a community, on whose goodwill their livelihood depended. Today, most car dealers offer their cars online and a significant number of sales are made to people out of their local areas. Dealers don’t feel as accountable to distant online buyers, many of whom they never meet. Warranty laws make buyers responsible for returning a defective car to the dealer for repair, and when the dealer is far away, that may be impractical so in effect cars are sold without as is, and with no ties to the community.

Knowing this, dealers are able to sell cars they would not have been comfortable selling to a local customer, and the overall quality of goods they sell is diminished by the internet. In person car buyers always ran the engines and looked at flaws. Online buyers participate in a fantasy market where every car is nearly perfect on the website, no matter how it might appear in real life.

The same is true for a million other products – it is impossible to tell the gems from the junk online and many items are less than what people hope for. This problem extends to the purchasing of services which are a growth area for internet marketers.

When home inspectors depended on the goodwill of realtors to refer clients to them, they tended to be responsive to the folks who sent them work. They had to do a good job, in order to keep getting referrals. In a small community, the feedback loop between the home buyer, the realtor, and the inspector was a tight one, and it fostered a strong level of trust. It also created a trustworthy world for many people. A homebuyer coming into the market could have a reasonable assurance that a realtor they engaged would look out for them, and give them good recommendations, because they lived in the community they served, and bad news can travel fast.

By that means, in the pre-Internet world, a person who was new to an area could still seek and find good referrals for things they needed to establish a good life. Today, that model has largely been supplanted by a faceless Internet. One overlooked result of that change is the effect on the upward mobility of aspirant small business people who provide the services.

In the community based model, business was driven by referrals, and the referrers and referrers were part of a mutually supportive network. Each member needs the others, and while there is some competition, there is also a recognition that their success is mutual. In the local model, an individual home inspector or handyman works hard, does a good job, and gets more and more referrals. At some point they respond by hiring an assistant, then another. At that point they have made the move from individual tradesperson to contractors.

Some of those new contractors may keep their same positions in the network, or they may seek larger jobs that require more resources, which they now control. The larger jobs tend to have fewer competitors and higher profits, which facilitates their scaling up even farther. Contractors can move from successful to wealthy.

That model still exists in many places in America, but it is facing competition from Internet-based alternatives who are increasingly the choice of young adults who grew up in an online world, with little to no reliance on trusted local connections.

Some internet service providers are also local. Community businesses market themselves online, often with website as simple as “lawn care in Anytown, USA.” Those people don’t always see the Internet as competition. But in today’s “pay to play” internet, well capitalized online competitors are at the top of search rankings, skimming the cream of all manner of local service opportunities.

The best known online service model is typified by companies like Uber, from whom contract workers receives a stream of jobs from the website, encouraged by promises of “more work, more pay.” But there is no upward mobility; the jobs are dead ends and the majority of the profit in the transactions goes to Uber’s managers and financiers.

There is no place for a local delivery service when Door Dash comes to town. The well-capitalized online firm lures drivers from the local service with the promise of better pay, and when the local service disappears, they charge the local businesses higher and higher delivery rates while cutting back on what they give their drivers. The result is a transfer of wealth at every level. Local delivery businesses fail. The drivers are paid the same or less. The restaurants and others whose goods are delivered are squeezed more, and the public bears the burden.

In trades like home inspection or plumbing, national operators evolved, many operating through local franchisees. In that model, the national company has the scale to manage an effective online presence, making them formidable competitors, especially for an individual aspiring to enter the trade. While a franchisee may do well under this system, there is little opportunity for the workers to become owners. In a traditional workplace, most workers have a expectation of higher wages with seniority, but that does not apply in most online models, where the value of a work assignment is fixed by the website, and everyone doing the job is paid the same.

In a traditional trade business the higher paid workers are put on more challenging jobs. With the Internet model, where there is no local evaluation and pricing, all the jobs are equal. Control is shifted to the machine, along with most profits of the endeavor.

The people who establish these online ventures call themselves disruptors and allege they are providing better service at lower prices. While few would disagree with their disruptive nature, their low price promise seems to dissipate, and few if any of the workers in these enterprises makes a substantial living.

The big winners are the creators of the online businesses and the private equity that finances them. The losers are the workers, who are pushed into more marginal situations with virtually no upward mobility.

Aspiring tradespeople can still participate in local referral networks, whatever line of work the choose. But most of those networks are seeing competition from online businesses that have no connection to the area, or a tenuous connection through a franchisee. The result is diminished opportunity for people who see the trades as a path to security and prosperity, and creation of vast wealth for the small number of people who create online replacements for local trade networks.

While the idea of “tech billionaires” is a well-worn trope, the idea that they are created at the expense of working people in the trades is relatively unrecognized. Local business has been the source of most wealth creation in America, and that system is now threatened by highly capitalized internet-based startups in the same way that Walmart and other big-box retailers decimated America’s town storefronts.

Every year, millions of people come of age, aspiring to success and security, with skills positioning them for work in trades or services. What should they do? That is the subject of my next essay.

Getting Older With Autism - presentation to Interagency Autism Coordinating Committee Oct 26, 2022

noreply@blogger.com (John Robison) — Wed, 26 Oct 2022 20:41:00 +0000

I have been involved with autism advocacy for 25 years. Throughout that time, particularly during my 15 years of government service, I mostly advocated for autistic people younger than I. But at age 65, I am here to ask: What about the older autistic population? We have unanswered questions, and we also need support. I’d like to share some of the things I’ve experienced.

All autistic people have some degree of blindness to the unspoken messages of others. It’s part of the diagnostic criteria. What about blindness to ourselves? That is less studied but equally real. I don’t have a good sense of when I am hurt. I don’t know I’m too cold till I see the frostbite. I don’t know when to stop or when to back down. I don’t know how to read my own body.

When I was 50, that didn’t seem to matter much. If I miss medications now, I may die. If I overstress myself now, I may suffer injuries I can’t recover from. Every year the stakes for “failing to read my body” grow higher. Isolation is a recognized problem for autistic people and it’s worse in old age. How many people like me die alone because they are out of touch with their bodies and their needs, and no one is there looking out for them? No one knows.

Growing older, I feel I have gotten more autistic in some ways. The same is true for many autistic friends. We are more inclined to be alone; we are more isolated. Tics and mannerisms long lost, have resurfaced. I seem less mindful of the need to look at other people; my social skills have slipped.

That is contrary to my observations from a decade ago, and the findings of some studies, which say people with good cognitive ability tend to see their disabilities diminish with age. Ten years ago, I observed how much more successful I was in social situations than, say, at age 20. I saw how much benefit I’d gained from learning what my autistic strengths are, and how to use them to the best advantage – something that comes with life experience.

Those things are still true today, but they are less meaningful. I’m not as inclined to be social. I am more at home alone. My autistic technical abilities brought me success in many domains – engineering, music, photography, and writing . . . but I doubt I could replicate those successes with my current cognitive abilities. I’m not as flexible. Not as patient. Not as full of new ideas.

All those same feelings might well be expressed by any aging person. We hear of senior moments, slowing down. Are autistic people different in that regard? I don’t think anyone knows.

An old friend with autism had part of the answer. He said, “when I hit 55, it’s like my ADHD fueled energy just ran out.” That is very much how it feels for me. Ten years ago I served on this committee. I served on INSAR’s board. I held two teaching appointments and did 25 speaking engagements every year. All while running my automobile complex here in Massachusetts.

Looking back, it was surely ADHD-fueled energy that kept me going, and it isn’t there now. In terms of accomplishment, or my ability to accomplish things, that is a great loss. I cannot do what I used to take for granted. If I look at the diverse range of things I did in 2017 – five years ago – and the range of things I can do today, it is much more limited. That is not by choice. I cannot do it all anymore. My ability to juggle disparate cognitive-intensive tasks and get them all done was considerably better than average. That is no longer true.

Ten years ago, I was confident and full of energy. Now I am anxious, worried, and tired. There is no question that my anxiety has increased these past few years. Is that autism and aging? Or a side effect of covid? I don’t know, but before covid, I knew older autistics who became more anxious. At INSAR conferences, I saw older autistic friends become paralyzed by anxiety. That is a serious and overlooked problem in autistic people with otherwise good cognitive function, and I feel it worsens with age.

I have just enumerated some ways in which it feels like I’ve diminished with age. Luckily, I am surrounded by people who care about me and look out for me. Without that, in isolation, I can well imagine that I would come to the rational decision that suicide is my best option, as there would be nothing but pain to look forward to. As someone who has lived with depression and anxiety all my life, and who has been in that place more than once, I urge you to take that seriously. If I – seemingly well connected to society, articulate, and capable – can get to that place, how many of my fellow autistics who do not have my advantages, choose that way out?

The problem to solve is a societal one, not an individual issue. In earlier IACC meetings, we discussed the emerging realization that intellectually disabled and non-speaking autistic people might have as much or more suicidal ideation as non-intellectually disabled autistics. Suicide is a lifelong risk for us, no matter where we fall on the spectrum.

A recent Labor Dept study found 7% of Americans were self-employed. A Dartmouth study of desire found 70% wanted to be. I’ve been self-employed most of my life because I had no choice. Being autistic, I did not have the social skills to navigate work life in large organizations. That’s a side of life the stats don’t capture. There is a way we can see it, though. The prevalence of autism and neurodevelopmental disorders among the homeless and incarcerated is well above the prevalence in the general population. Brugha and later studies show older autistics, as a group, end up worse off than the general population. Given the contributions we make to the world, that’s wrong.

At 55, I felt like I could keep working forever. At 65, I feel I have no choice but to work forever. Those are very different perspectives. I – and most older autistics – have absolutely no government, academic, or corporate retirement plan. In saying that, I am not counting social security and disability. I am talking about retirement funding that provides a decent standard of living in retirement.

The only retirement I have is what I make, by investing and building assets. It’s easy for any older person to say “that’s just the same as me,” but it’s not. Those of you with government, tenured academic, or corporate jobs get your retirement security by being part of a social system where you are employed. As long as you remain in the social system for the duration, it takes care of you. I know of no statistics on this, but I suspect the number of autistic adults who successfully run that social skills gauntlet is small.

Reflecting on that, I realized the issue is not the money. Now, don’t get me wrong – money for retirement security is very important. But I think the social network afforded us by employment is actually even more important. That is something I could not see when I was young but I see it very clearly now. Work is the place where so many people make friends, find life partners, discover new interests, and join a social web that nurtures and protects them in times of stress. In that respect, the workplace is far more than just a job.

Years ago, when I tried to fit into a large company without success, I sneered at the people standing around the photocopier, gossiping. Why weren’t they working? They were just wasting time. Now, I realize that gossip I thought was a waste of time actually nurtured those people and represented valuable social support for many. Reflecting on my attitudes at the time, it’s fair to ask: Did they exclude me? Or did I exclude myself?

To help autistic people fit into workplaces and become more socially connected, I would start with this suggestion, which I suspect every autistic person listening will agree with: Fix the ugliness in our schools. That’s a tall order, but that ugliness not only leaves millions like me with psychic injuries – and the resultant disabilities - that last a lifetime; it is the breeding ground for today’s bumper crop of school shooters and others who pose a far greater threat to society than people like me. Our mistreatment in school throws up barriers to success at work.

That stigma of childhood rejection follows us into adulthood, where it joins with our autistic social disabilities to cause endless missteps in our efforts for social engagement. Many autistics respond by withdrawing. Others turn to drink. Some succeed in connecting, either with one person (and that may be enough) or with many. Many of us succeed at some level, but we live with more sadness, anxiety, and isolation than anyone would want.

There is a whole generation of 40+ autistic people who grew up with no diagnosis. Many of us are just going along, aware that we are different from others, and often feeling we are “less.” With no understanding of our neurological differences, how could we see things differently?

Having talked with many such undiagnosed people, I believe the last thing they want is for someone to say, “Hey! You act autistic! You must have undiagnosed autism.” When presented with a potential paradigm shift like that, they reject it because of autism’s stigma. That was certainly my first reaction. But in my case, the therapist handed me Tony Attwood’s original book (Asperger’s Syndrome – a guide for parents and professionals), and he said, “No, really, it’s not what you think. Read about it”. He had highlighted passages that did indeed match me.

But the autism stigma was still a hard thing to overcome. At first, I saw a disease with no cure. I thought it was why I’d failed, and I’ll never get better. That’s not how discovery has to be for us. This is where neurodiversity comes in.

If we are presented with the neurodiversity paradigm instead of a medical diagnosis there’s a chance for a better outcome to those conversations. Hearing that we have a different kind of brain is fundamentally different from hearing we are “disordered.” We are stronger in some ways and weaker in others. We start by talking about balance, not a list of deficits. We start with diversity, not disorder.

The place I really see this happen is in workplaces with many neurodivergent people. I can give you one example. Some of you may know I am the neurodiversity advisor at the Lawrence Livermore National Lab. The lab is one of the world’s premier scientific institutions. Engineers and scientists at the Lab work on some of the most difficult scientific and technical challenges known to mankind. Success often requires extraordinary cognitive gifts. Often, those gifts are accompanied by diminished abilities in other domains. So many brilliant scientists and engineers have terrible trouble with human relationships. As an autistic person, I see neurodiversity at the root of that. Not autism.

If I were to say, “you act autistic” to an accomplished scientist, he would very likely reject the notion, because autism is a medical term for disability. Any conversation about autism starts with deficits. Deficits imply failure, and most people working at a place like Livermore would not be characterized as failures, no matter how they see themselves inside.

If, on the other hand, I explain how the neurotype that makes them so successful in the technical arena might hamper them in social settings . . . we have the basis of a conversation that leads to understanding. At the Lab, enlightenment has been as transformational for some of them as it was for me, years before.

So who might initiate these conversations? I think neurodiversity at work programs are going to move in that direction. One thing Livermore is doing in their neurodiversity work is directing the focus onto neurodivergent people who are already employed there. That’s where companies will get real benefits. Make a few thousand existing workers happier and more productive, and you win big; more so than anything you’ll get from a dozen token “ND at Work interns.”

Companies that believe in neurodiversity should see that the neurodivergent population they need to reach is not out on the street waiting to be recruited. It’s on the job right now.

Outside the workplace, once you are dealing with people who have aged out of the public school’s special ed supports, I suggest medical and counseling professionals begin to replace their autism language with neurodiversity language. Less stigma. More connection. We will need a lot of training to get medical and counseling professionals into this new space.

Here’s a final thought on neurodiversity in this space. You know me as an autistic person. But my multitasking was always in the ADHD arena. My errors in reading are dyslexia, just like my son. My tremors are hints of epilepsy and possibly Tourette’s. Saying I have a number of “comorbid conditions” verges on insulting, and it has no meaning to me. Saying I am neurodivergent . . . that feels like the right thing to say. That’s me. Others feel different. We should respect all our personal choices in that regard.

Before I ask for questions or comments, I’d like to offer these thoughts:

I served two terms on this committee, and I am proud of most of what I said and did. There is one thing I regret. I regret the times I criticized or mocked people who attacked me or said things I thought were ridiculous. To those of you hurt by my words, I apologize.

Serving on the IACC comes with a duty to advocate for ALL autistic people, no matter who they are or how they feel about autism, themselves, or this committee. Our job, in representing the autism community before the Federal government, is to do our best for all autistics, without favoritism. Today, you are here to guide tomorrow's scientific research as you are guided by today’s knowledge. Every person who comes before the committee went to some trouble to do so, and they deserve attention and respect. In the last years of my service on the IACC, I came to believe those words apply most of all to the people who oppose us or hold views we think are wrong or even dangerous. We are their representatives too.

It's up to you on today’s IACC to carry this advocacy forward, and I urge you to do so with kindness, respect, and wisdom.

John Elder Robison

October 26, 2022

Scenes from the Big E 2021 Fair

noreply@blogger.com (John Robison) — Sat, 25 Jun 2022 21:59:00 +0000

If you like photographing people and action, it's hard to think of a better venue than the Big E - the Eastern States Exposition Fair, which happens in West Springfield, MA over 17 days, encompassing the last two weekends of September and the first weekend of October.

I have photographed the Fair for 25 years, and in that time I've see the transition from black and white to color, from film to digital, and then from one generation of digital system to another. 2021 marked the first year I shot the fair with mirrorless digital cameras, with most of these images shot with a Nikon Z7II. Others were shot with the legacy system, the still-capable D5.

Join me on the grounds again this September 16 weekend.

Who do you recognize?

What's your favorite?

Thoughts on Writing

noreply@blogger.com (John Robison) — Mon, 21 Mar 2022 19:44:00 +0000

It has been 45 years since I first got the idea of writing things people would notice. The first things I wrote were descriptions of electronic circuits I had designed – how they worked and what they would do. I did not have the literary skills of an author, but I had technical competence and a decent command of language. Most of all, I had a gift for explaining things in ways others could understand.

I did not realize it at the time, but those first missives were instrumental to success in my career in electronics. No one paid me for my writing, but it was my written words that brought me the work that sustained me. Even when my work spoke for itself I still had to write notes and proposals to get more.

In the mid 1980s I had moved into “executive” jobs where I was a manager, not a technical person, and it seemed like much of what I did was write and attend meetings, where things I had written about were discussed. In hindsight, I see the ability to write clearly was very important. Writing kept me employed, even though my job title was engineering manager, not writer.

When I quit electronics to fix cars, I set aside the Parker pen and the IBM Selectric typewriter. Now, I would be another kind of tradesman, picking up Snap-On wrenches instead. But the need to write was still there. I had to promote my fledgling business fixing cars. I had to establish my expertise. To do that, I began writing articles and submitting them to enthusiast magazines. I knew I could never buy a full page ad in a Land Rover magazine, but I was able to publish a full page article at no cost at all. The same was true for Rolls-Royce, Jaguar, Mercedes and other car magazines. I sent stories to all of them and most were accepted.

My business prospered and I saw links between my writings and people who brought work to the shop. “I read your article about . . . “ was the start of countless interactions.

Later on, when I looked on Internet writing forums, I saw how critical people were of that practice. Magazines who published the work of people like me without compensation were said to be taking advantage of us. I stopped giving people my articles for free. I began publishing them on my own websites, and licensing words and photos to groups who were willing to pay.

At some point in that journey I learned I am autistic and decided to write about that, in order to help young people like me see they could grow up to have good lives. That was the first “altruistic” writing I did. Seventeen years ago, my father died, and I wrote a story about that. My brother put it on his website, from which it was picked up by NPR and hundreds of thousands of people saw it. I was shocked. At the same time, my younger brother had written a book about our childhood that had become a bestseller, and I found some of his readers suggesting I write my story.

I did that, and when Look Me in the Eye came out, it and the writing that followed put me in front of millions. That book was the right story at the right time, and the success of the first book led me to write a second, a third, and a fourth. I wrote a dozen chapters for academic books and hundreds of articles. So many people read them that I became known not as an engineer, or a fixer of cars, but as an author. Despite that, I have always felt like a tradesman who uses words in furtherance of the trade.

While I was writing on autism and neurodiversity I continued working on cars. Or rather, I continued running a business that worked on cars. While the car company still does a lot of service, I found a more creative outlet in the restoration side of the business which has grown from nothing to most of what I do in the past decade. Writing is absolutely essential to that.

In the automotive sphere there are many large companies. An individual like me can never compete with them for ad space. The only way to build a reputation as a restorer was how I started in the 1980s – by writing stories about fixing cars and offering them to magazines. Sure, I read how magazines took advantage of “poor writers” like me, when they printed my stories. And I understand, the market may seem limited. If you were a publisher, how much would you pay for a 2,500 word article on rebuilding convertible tops on Bentley Azures? With fewer than 1,000 such cars in North America that is a pretty niche market, compared to writing about growing up with autism – something that affects one in thirty American families.

Let me share a secret. The “free” articles I have written about those arcane topics have brought a ton of work into our shop. They established our company as top experts and were instrumental to the success we enjoy today. Don’t think for a second I was taken advantage of by letting those magazines print my stories.

If I look at the return, per word, for the specialized car articles versus my bestselling books, the return per word on car articles is much greater than anything else I have written. Now, plenty of people would argue that the social value of my writing on autism and neurodiversity has brought far more to the world. I agree, and I’m proud of that, but it does not change the fact there would never have been a Look Me in the Eye if I had not first built a business that gave me the freedom to take the time to write on autism.

If you are someone who dreams of making money from writing, there is an important lesson here. It is incredibly hard to write a book, get an agent to read it, and get a publisher to buy and publish it. Once it comes out the odds of having a bestseller are tiny. Real financial success is so rare.

Writing those “free” stories – as I have done for 45 years – and using them to advance in business, build a reputation, or gain work for yourself or your company – that is surprisingly easy to do. If you do it right, you don’t need a bestseller to make a living from your words.

It’s just like when I got into engineering rock and roll music. Millions of kids dream of being a hit singer, and the competition is intense. Who dreams of being the sound engineer? I was able to walk in and go right to work keeping the shows running. So what if I didn’t sing.

Many people believe you get a job in academia by going to college, getting a doctorate, and then applying for work. In my case, my academic appointments at William & Mary and then at Landmark College were a direct result of the power of my written words. No doctorate was involved. That may seem unusual today but 100 years ago it was common. Words have a power that transcends more ephemeral things like a college degree. A degree cannot convey your powers of reason the way your words can.

People ask what my next book will be. I expect I have more to say, but at this time I don’t have a topic. I do have ideas. Whatever I end up doing, know this: Any book I write will be made possible by the money and security I have derived from writing seemingly pedestrian things all my life. If you want to be a writer, that is the path to success. Don’t try to write a bestseller. Be a tradesman with your words, and write what is useful and build a life around it.

Sometimes success in writing isn’t what you think it is. Writing is what got me where I am, but not in most direct manner.

John Elder Robison

Reflections on 2020

noreply@blogger.com (John Robison) — Sun, 13 Dec 2020 22:36:00 +0000

December 13 - It’s hard to believe 2020 is coming to an end. In Decembers past I sometimes assembled photos of places I’d visited. Prior to the pandemic, I spent a dozen years on the road, sometimes traveling 120,000 air miles in a year. This January started like many others. We spoke at some events in Florida, and Cubby came along to visit the alligators at Wakulla and my aunt and uncle from Cairo, GA:

This year, it all came to a stop.

It was early March when I took my last trip. Covid was in the news every day, and borders were closing. But there was no sense of trouble when I flew to Florida for the Amelia Island car show. I had a job to do – @RobisonService had a Ferrari and a Corvette entered in the Bonham’s auction, and I went to represent them.

In the few days before the show, everything changed. Amelia is a big show and a lot of people fly in to attend it. Our borders closed, and Europe was already locked down. Hotel rooms were suddenly empty. At the show field, some people eyed each other warily, wondering who might carry a deadly infection. Others were happy to see their friends. Here I am with Ferrari expert Marcel Massini:

The front rows of seats at the auction are generally reserved for the big bidders, and many of the seats lay empty. You could sense the uncertainty in the air as the auction started. Bids for most cars were far below projections. Many people walked out with the sense that markets were in free fall. The stock market certainly gave that impression.

In a matter of days, airports all over America fell silent. The crowds vanished and planes sat idle or flew empty. We were consumed by worry and fear for the future. Two weeks later, the governor of Massachusetts ordered a statewide shutdown and our company’s parking lot emptied out, almost as quickly as the airports. Almost as an aside, the phones stopped ringing and our stock portfolios were down almost 40%.

Anyone who was around in 2008-9 has seen this play out before. Over 33 years in business we’ve seen a few downturns. One thing I’d learned is that most of us don’t live or die by the markets or the auctions. It does not matter what your assets are worth as long as they continue making you a living. I wasn’t planning to sell my stock or my company; what mattered was getting through a down time.

As a seller's agent it felt like the spring auctions were awful, but there are always two sides. Other clients have been buyers, and they have been sending a stream of jobs our way.

I write about the unusual cars we restore and take to shows because those are what interest me, but we do other things at my workplace. Robison Service is part of the Springfield Automotive Complex, which is home to a state inspection facility, a general car repair shop, a detailing shop, an undercar and alignment shop, and an ambulance garage for Springfield and surrounding towns.

With all those activities we were one of the businesses designated essential, and we never closed. We did furlough some workers, and I worked from home for a time, but we were lucky. By summer businesses were re-opening and work returned to the complex.

It has still been a hard year. Quite a few of our clients got sick, and a few died. Several workers in our complex became ill, but all recovered. My neighbor at work was diagnosed on a Wednesday, and died the following Monday. With 5,000 new cases being called every day in Massachusetts, we are in the thick of it.

Every day I am grateful for our staff, who have stuck together and kept the place going. I am grateful for our clients, some of whom saw we were slow, and sent more work to keep going. I am grateful for our bankers and our suppliers who ensured a flow of funds and materials to keep operations running as smoothly as possible. The work photos are from better days, when we didn't have masks, social distancing, and more . . .

It has been a year of many challenges, but we are still standing as we near the end.

One thing this pandemic has shown me is that a part of me will always be here at the car complex. I’ve had the great honor of traveling the world to speak about autism and neurodiversity, and I have been able to play a role in establishing policies to help our community. I’ve even followed in my parent’s footsteps teaching neurodiversity in college.

But in what seems like the blink of an eye, beginning in March, all those activities shut down or transformed. A dozen speaking engagements just evaporated. Autism conferences like INSAR were all cancelled. College went online, and I found myself struggling with Zoom to engage with students. I am forever grateful to the Arnow and Olitsky foundations for keeping neurodiversity programs going in this challenging time.

My college teaching appointments are something I am proud of, but they don’t pay enough to live on. It is the car complex that has sustained me – and everyone else who works there – through this most challenging of years.

I’m doing some online neurodiversity work, and I hope to travel again in 2021, but this pandemic has shown me the great value of being right here in Springfield with the cars and the people that have been part of my life, since long before I knew anything of autism.

2020 has certainly made me rethink my priorities. I’m sure many of you feel the same

As we go into the holidays I wish all of you well and hope for a better years for us in 2021.

Meanwhile, here are some photos that show 2020 through my eyes.

Best wishes

John Elder Robison

Sights from Wakulla:

An engine

This Continental SC will be in the spring issue of the Flying Lady - look for it there

Rocket engine

With Stephen Olitsky and Ernie Els . . . in the last weeks of pre-pandemic freedom

A Rolls Royce Phantom at work

Welding a frame for a 60s Maserati V8 - we have three here for overhaul now

The woods at home

There are probably not 100 Alfa Romeo Montreals in the USA

We were proud to send this NAS Land Rover Defender 110 home to upstate New York this summer

A rare Peugeot 404 convertible at @RobisonService

Night moves - a Bentley on the transport trailer

Possible Autistic Vulnerability to COVID-19

noreply@blogger.com (John Robison) — Wed, 08 Apr 2020 15:39:00 +0000

This is a complex subject, but I'll do my best to explain . . . .

Over the past 20 years we have made some progress understanding the biological underpinnings of autism, and by extension, ADHD and other related neurodevelopmental conditions. We have long known of links between autism and dysregulation of the immune system. One marker of that is abnormal cytokine levels found in some autistic people.[i]

We don’t know if the immune dysregulation leads to development of different brain wiring, or if our different brain wiring leads to immune dysregulation. It’s also possible there is some factor common to both, making immune dysregulation and autism (in some people) both by-products of some lower level difference. One reason I advocate for basic research is to answer questions like that. While autism itself if not physically life threatening, immune dysregulation is. When the two are intertwined as they are in many autistics, it presents a medical threat we need to address.

As further evidence of immune dysregulation in autistics, we know many of us have co-occurring medical problems that are also tied to immune dysfunction. Those conditions range from allergies and sensitivities to asthma to diabetes. GI problems – one of the most widely discussed co-occurring problems for autistics – also have an immune dysfunction connection. While we don’t know how those conditions are intertwined, the fact that they are – for many people – is undeniably real.

One thing we’ve learned is that autism is a very heterogeneous condition. In other words, at a biological level, there is no one “key to autism.” Rather, there are thousands of things that interact in complex ways to produce the behaviors we call autism. Therefore, while immune dysregulation may be a big issue for some autistic people it may have zero impact for others. We do not know why, or who’s in one group and not the other.

In recent years scientists have worked to understand the connections. One area of focus has been abnormal cytokine response. Cytokines are small proteins used by the immune system. In a 2018 article from Frontiers in Neuroscience, several scientists from the UC Davis MIND Institute describe the connections.[ii] Our bodies contain a number of cytokines; one of particular interest in autism is called IL-6, or Interleukin 6. IL-6 is encoded by the IL6 gene and expressed (created by) white blood cells (leukocytes). It is a driver of fever and inflammation, among other things.

Most lay people had never heard of cytokine responses when that article was published. Anyone who reads about the ways COVID-19 can turn deadly can’t miss the term now. Doctors ascribe deadly lung and organ damage to “cytokine storms” that occur when a patient’s immune system goes wild in response to infection and the body attacks itself.[iii] Some doctors hold out hope for immunosuppressant drugs to combat this[iv]. In the thick of a pandemic, no one knows who might be vulnerable to these cytokine storms, but it stands to reason that one group could be folks whose mechanisms for cytokine regulation are not working properly.

Early in the pandemic doctors observed poorer outcomes in hospitalized people with cognitive disabilities. Most doctors attribute this to the many known reasons[v] that cognitively disabled people have sub-optimal outcomes, but one factor that has not been discussed is the possibility that cytokine dysregulation may an unseen problem, given the percentage of this population that have autism.

In the progression of COVID-19 there seems to be a window during which disease is mild, and then it comes roaring on with respiratory failure (possibly attributed to the body’s immune response). Some doctors have tested for elevated levels of IL-6 prior to onset of respiratory failure, and when it was high, treated with suppressant drugs with very good results.

Are autistic people a group that should be particularly focused on this issue? No one knows, because there has not yet been time to study the issue. Given the uncertainty, and the high risk of death after COVID-19 respiratory failure, autistic people in that position would be wise to ask the question of their doctors. IL-6 levels can be tested in most hospital settings and suppressant drugs are widely available.

There is more and more emerging evidence that sharply elevated IL-6 levels foretell respiratory failure in COVID, but so far no one has speculated who might be prone to this, or why.

There is other evidence that autistic people may be more vulnerable in a general sense. The Adverse Child Experiences study[vi] (ACEs) has followed participants for 25 years and established connections between childhood trauma and adult health problems. Other studies on the impact of trauma show intersections with vulnerability to conditions like obesity or diabetes. Many studies have established that autistic people experience more childhood trauma and live with higher levels of stress. We know trauma can lead high ongoing levels of stress hormones, which can compromise immune function.

Any autistic person who is hospitalized with COVID-19 would be wise to inform doctors that they have autism, and autism may be tied to immune dysfunction, and they may be vulnerable to abnormal cytokine responses as revealed by a test of IL-6 levels. The relationship between other neurodivergent diagnoses (ADHD, for example) and immune dysfunction is less clear but remains a possibility. You should also advise doctors that autistic people may not sense things in their own bodies and may be less aware of deterioration; closer monitoring is advisable.

In this article, I am not proposing treatments. There is no home remedy for this, and nothing you can do today to protect yourself beyond the social distancing steps we are all taking. Instead, I am offering very specific advice about tests and monitoring you can request for a hospitalized autistic person suffering from COVID-19. You should discuss the test results and possible actions with the doctors. I offer this advice because performing such tests may be far from the minds of most admitting physicians yet for some of us it may be a lifesaver.

I wish there were time to test these hypotheses better, but for some of us, the wolf is at the door right now. For others, he will spring tomorrow, or the next day. If we – as a group – are vulnerable to cytokine storms in this situation, the advance knowledge can be critical. The downside – the possibility of wasted tests – seems small.

There is always a risk when suppressing the immune system in a sick person. But the efficacy of that is currently being explored by many doctors treating COVID today; it is not a new suggestion I am advancing. I have written elsewhere about the psychological threat the COVID-19 pandemic presents for autistic people. This possible medical threat is one more thing to consider.

My best wishes to everyone in this difficult time

John Elder Robison

[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360854/

The Immune System, Cytokines, and Biomarkers in Autism Spectrum Disorder, Springer Neuroscience

Anne Masi, Nicholas Glozier, Russell Dale, and Adam J. Guastella

[ii] https://www.frontiersin.org/articles/10.3389/fncel.2018.00405/full, Frontiers in Neuroscience

Immune Dysfunction and Autoimmunity as Pathological Mechanisms in Autism Spectrum Disorders

Heather K. Hughes, Emily Mills Ko, Destanie Rose, and Paul Ashwood

[iii] https://www.npr.org/sections/health-shots/2020/04/07/828091467/why-some-covid-19-patients-crash-the-bodys-immune-system-might-be-to-blame

Why Some COVID-19 Patients Crash: The Body's Immune System Might Be To Blame, NPR Health Shot Apr 6, 2020

[iv] https://www.medrxiv.org/content/10.1101/2020.04.01.20047381v1, MedRxIV

Level of IL-6 predicts respiratory failure in hospitalized symptomatic COVID-19 patients

Tobias Herold III, Vindi Jurinovic, Chiara Arnreich, Johannes C Hellmuth, Michael Bergwelt-Baildon, Matthias Klein, Tobias Weinberger

[v] https://medicalxpress.com/news/2020-03-people-intellectual-disability-vulnerable-adverse.html

People with an intellectual disability vulnerable to adverse outcomes of COVID-19

Ciara O'shea, Trinity College Dublin

[vi] https://en.wikipedia.org/wiki/Adverse_Childhood_Experiences_Study

Wikipedia article describing ACEs study, partnership of Kaiser and NIH

Thoughts on #Coronavirus risk

noreply@blogger.com (John Robison) — Sun, 22 Mar 2020 16:37:00 +0000

This #coronavirus outbreak is causing a tremendous amount of fear and anxiety, especially among people with autism and other disabilities. Many of us have expressed fear that we may be seen as expendable and we are likely to be more at risk due to other medical complications.

As an autistic person the best thing I can offer by way of calming is some logic and reason, based on good facts.

Our country's failure to expand testing has created the perception that there may be thousands or millions of undiagnosed, non symptomatic cases lurking. The evidence isn't bearing that out. Massachusetts is ramping up testing fast, from 50 tests a day two weeks ago to 1,000 tests a day now. Currently the tests are only done on people that doctors suspect may be infected. But 90% of the tests are coming back negative.

Consider what that says: Most of the people who think the have coronavirus, or are suspected of having the virus by doctors, don't. No matter where you are, you are likely to suspect virus is lurking unseen within you or the next person you will see. The current odds to not bear that out. At this time, the fear is worse than the reality.

We say air travel carried the virus around the globe. But look at who got sick - passengers in adjacent seats. Not flight attendants. Not whole planeloads of people. That strongly suggests that the virus is mostly transmissible over short distances - 2-3 feet. There is no surge of cases among airline stall, all of whom walk the aisles. So that argues that social distancing works.

News stories focus on the total number of cases, without considering that most people recover, and the number of ACTIVE cases is much lower and growing slower that the scarier total number some reporters like to present. While reporters tend to focus on the rate new infections are reported, that number may grow faster as we ramp up testing efforts. A more significant number is the daily death rate. When that slows and begins to decline we will be topping the curve even if that's not apparent in the new infection statistics.

In Boston we had a big bunch of cases that emerged from the Biogen conference where large groups were packed for hours in conference rooms with a few infected people. We have learned from that. For many of us, we are not that close to people now and we are not next to them for hours.

Even in families when one member gets sick it is not a foregone conclusion everyone else gets it. That rate is actually under 40%. That gives hope also that this virus is not so incredibly contagious that we are all destined to get it in a matter of weeks, as some alarmists predict. If our social distancing slows the spread, hospitals will not be overwhelmed, and care will be there for the population who really need it.

Finally, with all the focus on deaths, the fact is, more than 96% of the people diagnosed with coronavirus recover fine. Since we know there are some folks who get mild cases and never get tested, the survival rate is probably higher. Therefore, if you do get it, odds are still on your side.

Sure, you may have risk factors like age, diabetes, heart issues . . . but you can also take steps to reduce risk, like the social distancing and staying home and out of physical contact. Given the number of people who don't take protective measures your own actions may well more than offset risks from age and other conditions. As always, we have options to influence what happens. Our individual outcomes are not preordained. Risk factors do not equal "being doomed."

There are always two sides to these things. Those are some facts to consider and discuss.

Best wishes in a trying time

John Elder Robison

The Limits of Neurodiversity

noreply@blogger.com (John Robison) — Mon, 02 Mar 2020 02:46:00 +0000

Neurological diversity is a biological fact. Neurological function varies between individuals just like other human traits. The difference is that neurological diversity has gone unrecognized until now, while physical diversity has always been plain to see.

Human diversity emerges as a result of genetics and environment. There is a large heritable component to some neurotypes, just as body shape tends to run in families. But it’s not all genetics. Environmental factors also influence human development. Diversity is also driven by evolution as many traits confer situational advantages, but it’s always a balance as “too much” or “too little” shades from difference into disability.

The continuum of neurological function includes people with many different cognitive traits. Memory, emotional sensitivity, ability to focus on a task, mathematical ability . . . all those things vary, as does general intelligence. Emotional intelligence has long been recognized and we are now seeing it is on a continuum with logical intelligence at the other end. In other words, some people are governed by emotions while others, in the manner of Star Trek’s Spock, are logical.

During the twentieth century psychiatrists gave diagnostic labels to cognitive traits that had been observed for a long time, but not pathologized with a diagnostic label. Happy or sad were long-recognized states of mind; psychiatrists recognized extremes of these behaviors with terms like manic or depressed, and they created formal labels like “major depressive disorder.”

Attention deficit hyperactivity disorder (ADHD) became the medical term for something parents called “bouncing off the walls.” Being withdrawn into oneself, having a limited range of interests, and having an impaired ability to connect with and engage others became autism, or autism spectrum disorder. The extreme logical thinker may exhibit traits of autism while the extremely emotional person can manifest traits of schizophrenia.

For several decades following their introduction, terms like ADHD or autism were only used to describe people with severe, profound impairments. Those labels were bestowed on children whose behavior was far different from that exemplified by most kids. Since differences existed on a continuum it was up to the trained professional to determine when simple difference became pathology.

Whatever one calls it, the range of neurological function, encompassing both typical and abnormal behavior, observed across a number of domains, describes human neurological diversity. That is neurodiversity, but neurodiversity is also more. . .

Neurodiversity has also become an identity; when individuals who had received psychiatric diagnoses wanted to identify themselves in non-medical terms. They felt they were “more than a diagnosis,” and believed medical labels pathologized them or carried stigma. Soon the word neurodiversity was adopted by others who lacked a formal diagnosis but still felt “different.” For them, the term was not assertion of a medical condition, or an attempt to claim disability supports, but rather a way to center themselves in the world.

In the neurodiversity worldview people whose neurology is “average” are called neurotypical. People whose neurology differs from average; i.e., having traits of autism, dyslexia, or ADHD, are neurodivergent. Neurodiversity is the term for the continuum, and the population may be called neurodiverse. While that seems straightforward, it implies “one way or the other” that does not exist in real life. Psychologists agree there is no such thing as “typical” – we are all individuals.

Therefore, thought leaders now question the use of the terms neurodivergent and neurotypical. They argue that neurotypicality is an invalid concept since there are no people who have been tested and found to be “midrange” in all cognitive dimensions. Instead, each of us has a mix of strengths and weaknesses, and since we are not generally tested, our abilities are only guessed at. Therefore, neurotypical is merely a rough approximation even as the population is undeniably neurodiverse. No one word defines us; individuals are best described by their specific traits or even by support needs.

Neurodiversity is therefore a biological fact and also a term of identity. When someone identifies as having autistic traits in the context of neurodiversity, they are not generally seeking medical supports or disability accommodation though they may also seek those things through formal diagnosis. Rather, they seek a sense of community by identifying with what they believe is a like-minded group.

Self-diagnosis of autism or ADHD is controversial but anyone is free to embrace the neurodiversity paradigm and say they are “different” because they are not assuming a formal medical label.

In terms of identity, most who identify with the neurodiversity paradigm see themselves as different, not disordered. They may also feel disabled, or disabled and exceptional. They generally perceive their neurological diversity as part of healthy human diversity. However, not all people feel this way about neurodiversity. Some feel so disabled, or suffer to such an extent, that they reject the neurodiversity paradigm for themselves. They describe themselves as sick, damaged, or injured.

That difference in views may be expressed thusly: At its extremes, difference becomes disability. While the point of transition varies from one person to another, there is always a point where healthy difference becomes pathology or disorder.

Studies have shown that most people judge themselves to be less disabled, even as observers think they are more disabled. In most cases disability is in the eye of the beholder. An exception would be in the world of work, where a person might not think of themselves as disabled, but they might not be able to complete certain work tasks on time or at all.

Neurodiversity as a biological fact applies to everyone. Neurodiversity as a term of identity applies to many people, but a significant number who feel disabled reject the neurodiversity paradigm. That is one limit of neurodiversity.

Schools and workplaces are fast developing neurodiversity programs, with a view to accommodating a wider range of people in schools and in jobs. That is a laudable goal, and an array of supports will no doubt allow people who have been excluded from work or school in recent years, to participate. Neurodiversity programs with intensive supports and a social welfare model – like Project Search – will help a number of people who are too disabled for other programs.

Beyond that there remains a portion of the population whose cognitive differences limit engagement in school and preclude transition to work. They may not be able to communicate effectively, or they may have significant cognitive impairments. They may have medical complications like epilepsy that compromise quality of life. Critics of neurodiversity express the fear that broad adoption of the neurodiversity paradigm renders such people invisible.

In this writer’s view, that need not happen. Programs to support less disabled people should never come at the expense of programs for the more disabled. Disability support is not a zero-sum game. Neurodiversity – whether as neurological fact or social identity – should not be perceived as denial of profound cognitive disability in its many forms. Neurodiversity is a way for people to identify themselves, but some people are so disabled they cannot do that, and they cannot rightly be called anything but seriously disabled.

Is #Neurodiversity right for you? That's for you to decide, but I will offer this: If you feel you are different, or see in yourself traits of defined neurological differences like autism or ADHD, the Neurodiversity paradigm is a healthy way to see yourself and the world. If indeed your neurology is different, then that is a fact. It's not a sickness you can cure. It it the way you are. Accepting that and making your best life going forward with an informed understanding of your strengths and weaknesses compared to others is a healthy way to proceed.

John Elder Robison

March 2020

Images of the 2019 Big E Fair

noreply@blogger.com (John Robison) — Sun, 23 Feb 2020 22:40:00 +0000

Every September I look forward to photographing the Big E - New England's state fair and carnival. The Fair draws about one and a half million people over its seventeen-day run, and I race to capture as much of the action as I can.

The Big E has run since 1917 at this location in West Springfield, Massachusetts. It was started as an agricultural fair, and still has a large agriculture component, but the biggest part is now family entertainment. There are horse jumping contests, dog shows, livestock exhibits, rides on the midway, mimes and street performers, a circus, cars on display and a large craft area. Plus music and live entertainment. It is a quintessential state fair.

The images below are just a sampling of things I saw over the run of the fair. Some of the images below have appeared on the Fair's social media, a few in newspaper and television media, while others are previously unpublished. You will see bigger-than life prints from some of these shots lining the walls when you come to the 2020 Fair. Look for my images at the entry gates and on the walls in our arenas.

Most of these photos were taken under natural light using Nikon D5 cameras with 80-400 and 28-70 lenses. High end SLR cameras still have an advantage focusing on the fast changing scenes on stage, particularly with the stage lights. Mirrorless camera are getting better but their metering and focus still falls short in these situations. A few photos were taken with a Leica M or a Fuji Xpro2.

I am one of the official chroniclers of the Fair, which allows me access to places the public can't be. That makes it possible to get the close-ups you see below; the performers know I am there and sometimes it's like a dance between us, getting these shots. With the exception of a few group photos, nothing here was posed; it was all shot live, unrehearsed, often in a performance I'd never seen before. Many of our big bands play one show only and there is no chance for me to rehearse what I will shoot.

After 25 years doing this, I am incredibly lucky that my pictures speak for me, and many performers welcome me to their stages in anticipation of a good result. These photos are all copyright (c) 2019 John Elder Robison, with all rights reserved.

If you see yourself in any of the crowd shots feel free to drop me a line and I'll get you a print. Otherwise these pictures are not for sale; they are what we call editorial images. That means they tell a story; they are not used for advertising or to endorse something. One day I hope to assemble the best of them into a photo book.

Here are some shots of the AJR Brothers

The fans were quite enthusiastic

The audience was packed tight from here to the stage. For the closeup shots above I was behind the crowd barrier, in a 4-foot wide walkway below the front edge of the stage

Meanwhile up on the front stage . . . .

You can watch the people all day long . . . a never ending parade

I have really noticed the diversity of our crowds these past years. One thing you still don't see too often is a nun, especially at a rock and roll show.

As darkness fell, Skillet prepared to take the main stage. Look at the building crowd out there . . .

And off they went . . .

Here's my old friend Gene Cassidy, president of the Big E, with two of the stars of the Coliseum horse shows. Gene is the only guy on the grounds who always wears a suit.

I'd name the two women if I could but one is a horse show leader and the other our long time organist

The Big E Circus has shows at 1, 4 and 7 every day. Over the 17-day run of the fair the circus performers entertain over 50,000 fans, many of whom come every year. The Big E circus is actually one of the largest tent shows in America for the time it runs and the Fair is able to get top talent.

The circus shots are always challenging because the tent is so tightly sealed that it's pitch-dark outside the spotlights, even in mid afternoon. The light does not always reach the top of the tents shots like the one above are difficult both because of timing and also because of lighting.

Outside, elsewhere on the grounds, I ran across Soltar, with wisdom of the ages; log rollers, and even a husband and wife butter sculptor team

Solar told this fine lady she would win the lottery but sadly that did not come to pass, and their next exchange was not so sweet . . .

The log rollers kept at it for 17 days and by the end, they were still falling off. You'd think they'd learn how to do it or quit.

Mothers and daughters, monster trucks, and water gun fun

Fine foods and Irish whiskey. The combination can produce some truly memorable behaviors, but fights and arrests are amazingly rare, given the crowds on the grounds. For the most crowded spot in New England, it is a remarkably safe place.

This year the Big E hired an artist to paint murals on the sides of the Coliseum. They also sold a sponsorship for one of the stages that left a horrible corporate logo behind the bands.It was a real challenge to photograph around, and I ended up getting some band shots posed in front of the murals instead, like these wonderful Mariachis:

We had Rhode Island's famous Beaver Brown band, whose sax player really knows how to step out and play

Ambrosia reprised their hits of the 80s. How Much I feel, Holding On to Yesterday and more

And the circus played on

Lettuce brought West Springfield some solid funk. Cool to see an instrumental act draw a good-sized crowd

Scott Stapp of Creed played some high energy rock and roll

Across the fairgrounds the 4H had a horse show:

Marilyn McCoo and Billy Davis Jr. packed the front concert tent singing hits from the 5th Dimension and new material

Here's the whole group backstage before the last show. These folks have been singing soul music for fifty years. Hard to believe. Five time Grammy award winners, and they still hit all the notes right there on the Big E stage

That night, Naughty By Nature from East Orange, New Jersey took one stage while California's own Sugar Ray played the other. Both groups performed to packed houses

Some people showed up hours early to grab the good seats

Three hours later everyone was on their feet

Back in the 60s The Who sang The place is really jumping . . . In the blackout they dance right into the aisle . . . as the doors fly open even the promoter smiles

Here are our promoters that night:

The next day was the Big E Collector Car Experience, which drew as big a crowd as the concerts.We had some famous names on stage but the real stars were the cars . . .

Elsewhere on the grounds we had more cars, hot rods, Sesame Street, and kids. Lots of kids

Readers of Look Me in the Eye may recall my time with Fat, a blues band from Ashfield, Massachusetts. Here were are at their show that night. What a cool thing, to be together again for a show 40 years later

As the fair went on we had Seraphina Violins, DJ Elyx, a finished butter sculpture, and sheep.

This fair was chartered to showcase New England agriculture. We can't forget the sheep. Or the llamas, cows, horses, goats, bunnies, chickens, minks, weasels, polar bears and all the other creatures on the grounds. Well, maybe not polar bears. But we do have bears.

They say this sculpture was carved from 3,200 pounds of butter deemed too old for sale as food. But then they melted it for popcorn for the afterparty, and the crews ate it and felt fine. Go figure . . .

There are signs all over the grounds. I shudder to contemplate the alternative to "real" ice.

Cures for lost people abound on the Big E fairgrounds

The Royal Canadian Mounted Police drew a crowd to the Coliseum while Collective Soul filled the arena out back

lil TJAY arrived three hours late, but he still drew one of the biggest crowds of the fair. They just kept packing in . . .

Every day, and every night . . . rain or shine . . . there is action on the North American Midway

We had Carly Rae Jepsen and Mason Ramsey, a 13-year old YouTube star

We got a new ringmaster for the circus for the last days of the fair.

Artimus Pyle, the original Wild Man of Lynyrd Skynyrd played all the old music, and brought the lovely Seraphina Violins on stage for the second show . . .

Ned Niemic and his crew led the famous Hallamore Draft Horses every day. When it comes to horsemanship, with 50-plus years holding the reins, Ned is as good as they get.

Foreigner closed out this years fair, and for an encore, they brought out the Chicopee High School Choir

Thanks for stopping by. Look for me on the grounds at the 2020 Big E, September 18-October 4

I'm also JohnElderRobison on Instagram, @johnrobison on Twitter and JohnElderRobison on Facebook.

John Elder Robison

Neurodiversity, Disability, and Exceptionality

noreply@blogger.com (John Robison) — Thu, 05 Sep 2019 01:28:00 +0000

This six minute video of my convocation talk at Landmark College really encapsulates my thinking on neurodiversity.

We can have disability diagnoses, but we do not have to live as disabled people, thereby internalizing the idea we are "less" than others. We can choose to live as neurodivergent people - using a term that springs from our own community - and recognize each of us has a mix of disability and exceptionality.

Watch the video and tell me what you think:

John Elder Robison

A Letter to High School Students

noreply@blogger.com (John Robison) — Mon, 25 Feb 2019 18:39:00 +0000

Over the past week I received a dozen letters from students who read Look Me in the Eye as part of English class in Southbury CT. At first I thought to answer them one by one, but now they're coming by the dozen and I thought I'd answer them all here.

You asked about my childhood pranks. Why did I do them, and how could I do such awful things? Two passages in the book seemed to stand out for a number of you. One was when my parents were taking us to a therapist, and my little brother was too young to accompany us. I was about 14, and he was 6. I suggested we chain Varmint (that was what I named him) up in the basement, and several of you asked: was that sarcasm, or did I really do it?

Yes, I really called him Varmint. Many of you have brothers and sisters. I suspect, if you admit the truth, each of you has wished to chain your sibling in the basement on more than one occasion. Did you actually do it, or was it only an idea? Remember, in the book I just suggest it.

The second thing you noted was the hanging of the mannequin. You asked how and why I’d do such a thing. It started with the abandoned clothing store dummy. I could not leave such a treasure to be carried off with the trash, and I had to think of something to do with it.

Several of you observed that you could be arrested and punished if you did such a thing today. I agree, you could. But times were different when I was growing up. Keep in mind that I wrote the book about growing up in a small town in Western Massachusetts, and I still live there today.

The book does not say this, but later in life, I got to know the owner of that store. She remembered me carrying off the mannequin, and proudly put a signed copy of the story on her wall. Many of the people who appear in my stories remain friends today.

One of you remarked on the time I sent my biology teacher a truckload of gravel. Years later, I met the owner of the quarry, and he still remembers the irate call from my teacher. So the takeaway from that is, however awful those things may seem when you read them on paper, in town they were just kid pranks, and we remember them fondly.

Compare that with today, where everything around school is tightly regulated. No one talks things over anymore. You have fights at school and the police are called. Everyone turns to the authorities to solve problems because the ability to work things out has been lost. Sure, my pranks were irritating. But how does that compare to today, when an angry student comes to school with a knife or gun and kills someone? Today all this student frustration is bottled up and hidden and when it explodes, it’s deadly. My own angry outbursts were essentially harmless. No one actually got hurt, no matter how awful it sounded. I didn’t feel the need or desire to shoot or stab people.

One of you asked about Little Bear, and why she does not have a bigger part in the book. When I wrote Look Me in the Eye, we had been divorced a number of years, and I guess that’s the reason. If you wonder what happened, she reappears in Raising Cubby – the story of raising our son – and in Switched On – the story of my experiments with brain stimulation.

A few of you asked about drugs and drinking – how did I avoid that, on the road with rock and roll bands? Some of you mentioned peer pressure. As an autistic person, I was pretty oblivious to a lot of what went on around me, so I was probably not as sensitive to peer pressure as some of you. Also, I did drink and do drugs that were set in front of me. I’d sample what was being passed around. But I would not keep at it, night after night, getting hammered like others I saw. My violent drunk father put me off of that I guess. I didn’t buy drugs or drink when I was not on the road.

I guess I had enough trouble understanding the social dynamics around me without adding the complication of being a drunk or high fool also. As I got older, my interest just dissipated. When I stopped going on the road, I pretty much stopped all that too. Beyond that I really don’t know why I ended up drug and drink free, when so many others (including my own family) wrestle with addiction. My parents, brother, cousins, and grandfathers all had substance abuse troubles, so I must have the genes. Watching them – especially when I was a kid – may have scared me off.

Several of you commented on Asperger’s, autism, and how those are part of my adult sense of identity. You rightly observed that I grew up without any knowledge of autism, but I certainly knew I was different. Other kids had friends, other kids were invited to join teams and groups, other kids were popular and I wasn’t. What could a kid in that position conclude, except that they were defective; not as good as the others?

That was what I heard, in all the pronouncements that I’d never amount to anything. But it had kind of an opposite effect. People must have said, “you’d be successful if you’d just act right,” a thousand times. I heard, “You’d do really well if you put your mind to it.” Everyone ascribed my troubles to behaviors they assumed I could change, so in that telling, becoming successful was within my grasp.

And that is indeed what happened. I taught myself electronics and became a successful engineer, and then I taught myself about cars and became successful with them, and then I took up writing and that was a success too. It’s not that my life was all success – I had many failures on the way – but I was persistent both because I wanted to show my critics, and because I assumed it was “succeed or starve.” No one else was taking care of me.

What if I’d known I was autistic from age 5? What if people had whispered how I’d be in special ed, how I probably wouldn’t be able to live on my own, how I’d probably never get a good job or marry? That is what many kids hear today about autism. There is a benefit to having a non-judgmental explanation for how we are different, but an autism diagnosis comes with a very low set of life expectations, at least on the part of many teachers and parents. If I had been told my future was turning 18 and filing for social security disability, would I have been driven to do any of the things I did?

When I was a teenager I began gravitating toward places freaks and geeks hung out. Those included the science fiction society, the technology center, and the engineering lab at the local university. I am still friends with some of the kids I met there. What’s amazing is how many of us turned out to be on the autism spectrum or have kids who are autistic.

That shows how I was able to find others like me, even before I know about autism. Now it’s way easier to find similar autistic people. We’re forming communities online and in real life. We even have a word and movement: neurodiversity.

Some of you will make autism or other neurological difference part of your identity. When that happens, you are embracing neurodiversity – neurological diversity. Autism, ADHD, and other neurological differences are labels a doctor or psychologist gave you. Medical terms. Neurodiversity is the concept that those things are more than medical problems. Some degree of neurological diversity is a healthy thing and contributes to human diversity. Neurodiversity is our word – those of us who are neurodivergent. We wear that badge with pride, which is a great alternative to the shame surrounding the medical labels we had before.

As high school students you might wonder what comes next. For students who want to go to college, but need some help getting ready, Landmark College is the first neurodiversity college in the country. All the students at Landmark are neurodivergent, and proud of it. From there it’s a short step to regular colleges that embrace neurodiversity. I’m the Neurodiversity Scholar at William & Mary, one of the top public universities in America. I’ve advised neurodiversity programs at Drexel, Carnegie Mellon, UMass, and other schools, all of whom are proud of their neurodiversity initiatives.

When you look for work you’re going to see a different landscape. Companies from SAP to Microsoft to Home Depot to CVS are embracing neurodivergent people, under the moniker of Autism at Work. Autistic people with greater challenges are supported by programs like Project Search. That’s wonderful to see.

There has never been a better time to be different.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He co-founded the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Neurodiversity and Relationships

noreply@blogger.com (John Robison) — Mon, 19 Nov 2018 00:44:00 +0000

Humans seek relationships for all sorts of reasons: protection and mutual aid, employment, friendship, romance . . . It should not surprise anyone to read that people like to be with others who are like them. There are a million ways to define “like themselves,” and it may not even be a conscious choice, but there is no doubt that many communities of like-minded people exist, just as many like-minded people become friends or romantic partners.

Evolutionary psychologists have a term for that: Assortative Mating.

Said that way, you might think people primarily pair off with others like them for romance, but in fact people connect with “folks like them” for most all relationships in life. In the case of neurodivergent people, a recent Swedish study supports the assortative mating theory:

In that study, researchers found an autistic person was 11 times more like to marry another autistic person than average. They were also more likely to marry a person with ADHD schizophrenia or bipolar diagnosis. In that study, neurodiversity marries neurodiversity.

https://www.spectrumnews.org/news/people-with-autism-prefer-partners-on-the-spectrum/

Anecdotally, it appears many who are diagnosed on the autism spectrum in adulthood discover many of their old friends are autistic too. I’ve written about that in my books. It’s not unusual for an adult to have 5-10 adult friends who turn out to be on the spectrum. How does that happen, given ignorance of neurodiversity at the time of becoming friends? If it was just chance, a person’s circle of acquaintances would have to be 50 times the number of autistic friends they have, and that’s rarely the case. That’s an illustration of “assortative mating” matching up non romantic friends.

How does it work?

· Does assortative mating work at a subconscious level?

· How do we select friends?

· How do we select people for other relationships, if we select at all?

Being different has a huge impact on one’s relationship skills/success, as in these accounts of women discovering their neurodiversity:

https://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism

People often try to hide their differences in hope of fitting in. In the neurodiversity community that’s called masking. Here’s an account of its effect:

https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/

Questions for the class:

What are some psychological consequences of an inability to form or sustain relationships?

How do those consequences match the psychological challenges common among neurodivergent people (from earlier class discussions)?

In previous neurodiversity classes we talked about neurodivergent people’s often-diminished ability to read body language, understand subtle cues in language, or respond in expected ways in social settings. While those challenges are real, they are not exclusive to neurodivergent people. Who else has similar challenges?

1. People from foreign countries who don’t speak the local language?

2. People from cultures whose behavioral norms are unacceptable in a different culture?

3. Blind people, and individuals with some other perceptual disabilities?

4. Other groups?

Is the diminished ability to read others, etc., a “neurodivergent reading neurotypical” issue, or is it a “neurodivergent reading anyone else” issue? In other words, is this a universal disability, or a mismatch between neurotypes?

There is no doubt neurodivergent people have more challenges with relationships than neurotypical people, as a group. But are the challenges unique, or a microcosm of what every human faces at some level?

What do we do about difficulty forming relationships? Mutual support – often from online communities – is helpful. Therapies like PEERS are emerging. Are they just for the neurodivergent, or for anyone? Read and consider . .

https://www.semel.ucla.edu/peers

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Images of the Big E 2018 - Concert and Performance Photography

noreply@blogger.com (John Robison) — Wed, 03 Oct 2018 02:05:00 +0000

For 20 years I have had the pleasure of photographing the entertainment at New England’s largest fair, the Eastern States Exposition in West Springfield, MA. With over 1,500,000 people passing through the gates over its 17-day run The Big E is one of the largest fairs in North America and by far the biggest draw in New England.

The Beach Boys play for a packed house on closing night, Sept 30, 2018

Over the years I’ve developed what I suppose is a distinct style of photography, and the managers, promoters, musicians and other performers have welcomed it, and invited me onto their stages, into the back rooms, and wherever else I cared to venture in search of the winning image.

In this blog I’ve shown many of the performers who graced the stages at this year’s (2018) fair. If you performed at the fair and don’t see yourself or your group, I apologize as there were some I inevitably missed due to time conflicts and just sheer numbers.

The pictures you will see were taken with Nikon D5 and D4S system cameras. The closeup photos were shot through a Nikon 80-400 lens with image stabilization. Wider photos were done with a Nikon 24-70 2.8, also stabilized. All are hand-held, and no flash or other supplemental light was used. None of these shots are posed. All the performers were photographed while performing their acts. There are no rehearsals for this kind of picture taking. You put in your earplugs, pick up the camera, and go do it.

Most images were shot at night under stage lighting, using ISO sensitivities of 1000-12000. It is amazing how good the images are for a speed that would have been almost unattainable 10 years ago. Shutter speeds range from 1/80 to 1/250 of a second, with most shots being 1/100 or so. That allows enough motion blur to make the performers look alive, but not so much as to make the whole shot blurry.

The challenge with taking pictures like this is to see the image, compose and focus in the brief milliseconds that the possible picture exists. Since the performers are in constant motion you have to decide to shoot or not very fast, and you need a camera that can keep up. With the exception of the flying trapeze act (which happens too fast to see) all these pictures were taken in single shot mode. Each one represents a deliberate choice; not a lucky accident of timing.

While you can crop a photo in editing, you can't reposition the spotlights behind a performer's head. You can't remove an unsightly contrasty background, and you are going to be stuck with fragments of people and junk like cups and bottles on stage. You have to constantly compose around all those things. That's why I end up moving as much as the performers; it's that dance for me to get the lens lined up and they move constantly on stage and the lights move and change too.

Another thing you need for good performance images is proximity. I'm lucky to be offered special access because people like the resultant images. In the world of autism advocacy my books speak for me, to positive effect. In the music and circus worlds, I'm proud to see my imagery has done the same. In most cases I shot these performers at distances under fifteen feet. Many were shot at six feet and some even closer. To get that close I had to creep onto or beside the stages, and into areas where audiences never go. Interestingly, it’s the photos from those places that audiences look at and say, “Yeah, that is just how I remember it.” It seems the closer I get, and the more surreal the composition or exposure, the more real it feels to many people.

You can photograph an audience from within the audience, which is how the audience sees it. Many concertgoers have seen this in real life:

Or you can photograph the performer with the audience in the background, as in this shot of Noah Cyrus. Invariably it's the "from the stage" perspective the viewers connect with, even as it's not what they saw. Somehow image like the one below convey a more powerful message.

Close up with Noah Cyrus, The Big E, West Springfield, MA (c) John Robison

This is another example of proximity and what it means. For the photo below I stood three feet from funk drummer Jellybean Johnson, and shot this from a perspective few people see firsthand. Yet people say looks real to them, and what they remember. That shows how our imagination often means more to memory than what we actually saw, when it comes to emotional things like music. Many in the audience are lucky to see the drummer at all, though everyone hears him (or her.)

Jellybean Johnson, drumming with Morris Day (c) John Robison

I thank everyone in these shots for welcoming me onto their stages and into their performances, and the promoters and managers for bringing me onto the grounds. In every case they know I’m there and I sometimes feel we are in a dance – performer and I – looking at each other, looking away, both of us moving, waiting for that perfect moment. Sometimes people ask me how the music was, and the answer is . . . I don’t know. When I concentrate to take the photos I don’t really hear the music. I feel it, but I can’t recall it to you later. Others ask what kind of music is my favorite, and the truth is, I love turning all of it into imagery. I don’t really care what they play; it’s magic when it works.

Anyway, here are the images . . .

Alyssa and Ruby of Sisterhood

Connecticut's own Tom Dobson

Raelynn, famous for That's Why God Made Girls

Noah Cyrus, sister of Miley and daughter of Billy Ray and Tish.

Country star Chase Bryant

Cathy Richardson, singing what was originally Grace Slick's part in Jefferson Starship

Mike Love of The Beach Boys, still filling the house after fifty-plus years. Truly an endless summer . . .

The King Charles Troupe - basketball on unicycles in the middle of the circus

There views of the Mardi Gras Parade

Sixteen-year-old Jacob Sartorius, who's had a string of hits since 2016's Sweatshirt

The King Charles Troupe was the first all-black Barnum and Bailey act, back in 1954. Many of today's members are descendants of the founders, and tell that story with pride.

Trent Harmon

Robby Krieger of The Doors brings us as close as anyone get get to 1967 without time travel

Eliot Sloan of Blessid Union of Souls, singing his 1995 hit I Believe

Sometimes people ask how they can get a gig like this, writing stories and taking pictures. The surest path is to write stories people want to read, and take pictures that evoke strong reactions, and cast them out into the world. There are millions of photos taken on cell phones every day, and 99.9% are throwaways, for all practical purposes. The photos we remember take more than a casual snap.

It's very hard to make any kind of living as a photographer. It's much easier to be a storyteller, with words and pictures. If you succeed, your income is likely to be in the form of royalty, based on how many times something is read or downloaded. Or, if you are so lucky, how many books people buy.

I've been very fortunate that my books, articles, and photos have all been embraced by the public, to enough of an extent to keep going. With any luck, you can have the same success.

Flutes are not too common on rock and roll stages.

Marcus James Henderson and Chris Hicks of The Marshall Tucker Band

Matthew Ramsey of Old Dominion

Melody DeVevo of Casting Crowns. This Christian group drew a huge crowd at the Fair.

Morris Day of M.D. and the Time

Tony Orlando, famous for Tie a Yellow Ribbon, Knock Three Times, Candida and more. He was accompanied by Toni Wine on keyboards. Toni was the songwriter for many of Tony's biggest hits.

Circus star Bello Nock

The Voice, performed live on the Big E stage. This stage show featured stars of the television series.

Tito Jackson

Ice T

Terry Adams of NRBQ. When I started my musical career as member of Fat's road crew it was the mid-70s and NRBQ were the kings of the club scene in New England, along with James Montgomery, James Cotton, and a few other bands. It was great to see they are still on the road today.

This year the Fair hosted The Drifters, who I first saw when working Studio Instrument Rentals in NY in the 70s. The band members were all new, but the music and the dance moves were all the same.

After The Drifters, The Platters took the stage.

The Beatles Tribute

And the Official Blues Brothers Band, the continuation of John Belushi and Dan Akroyd's movie creation.

As they said, War has been low-riding funk since 1966

Jenny Tolman, up from Nashville for a single show

Hanson dancing on stage

And finally, Reel Big Fish

The photos above were all taken with long-lens SLR cameras, which are now the tools of choice for professional sports and performance photography. In earlier days photographers used manual focus cameras with shorter lenses. That was exemplified by the Leica which dominated news and documentary photography into the 1960s. I always shoot some images with rangefinder cameras for that "retro" look. Here are a few shots from a Leica M10 with 50 1.4 lens. No automation in this camera; every picture is focused in advance with preset aperture and exposure. Leica photography is much more deliberate, and tends to show a wider field of view. See the difference below:

Without tracking autofocus the Leica could not capture sharp closeups with any degree of reliability. Back in the day, Leica photographers would preset their cameras for a certain subject position, and shoot when the subjects moved into place. That limits what you can do, unless you are really fast on the manual focus. It would be possible to photograph stage performances with a Leica-style rangefinder (the Fuji X-Pro is another example) but the images would have a very different "wider angle" character as you see. Some would prefer that, but the closeup shots returned by the SLRs and long lenses seem to be most viewer's choice.

In the final analysis, the best camera is the one you have in your hand when that moment comes along. The better a tool you have, the better you can capture it. But beyond that, a great deal depends on you. Cameras will not compose images. They will not choose what to focus on, or what depth of field will look best. On a concert stage the lighting will overwhelm the metering, and overdrive the sensors. Exposures must be set by experience. To do those things well there is no substitute for long practice.

I can't say how many pictures I took while developing this style, but my techniques continue to evolve 20-some years later.

Your thoughts and comments are welcome.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Petroglyphs, Graffiti, and the inscrutability of public art

noreply@blogger.com (John Robison) — Mon, 20 Aug 2018 01:19:00 +0000

Donner Pass, a few miles west of Truckee, California, contains an area of well-preserved Indian petroglyphs. Petroglyphs are carved art created by cutting into the surface of rock. Archaeologists have found petroglyphs in many remote areas of the Sierra, often in places like the flat granite at Donner summit. This pass has been a trade route for a long time; the petroglyphs are thought to be two to three thousand years old.

Petroglyph at Donner Pass (c) John Robison 2018

The marker at the Donner petroglyphs is titled, “Sacred Symbols from Ancient Times,” but I’m not sure what evidence we have that the carvings were sacred beyond modern interpretation. We know very little about the context of these artworks. Were they trailside art that early people walked past as they followed a track over the mountain? Or were they carved in a special place, off the main trail?

Back in the day, the petroglyphs may have been painted or enhanced to be more visible.

A few hundred yards uphill you can see the tunnels that carried the first transcontinental railroad over the Sierra. The tunnels were cut in the 1860s, and augmented by wooden snow sheds to shelter the tracks from snow. The wooden sheds were vulnerable to fire and avalanche, and they were replaced by concrete structures in the 1950s.

Donner Pass - petroglyphs on flat granite in foreground, tunnels and snow sheds above and behind

Walking into the train tunnels the first thing you see is the art adorning the walls. The tunnels are protected from rain and snow, and they provide miles and miles of concrete and stone canvas for today’s artists. Are those sacred art?

In many places, in the tunnels, quality artworks lie next to or even underneath rougher drawings, symbols, and written messages. What are the messages in the modern art? As with the petroglyphs, no one knows.

When we call outdoor art graffiti we often use the term as if it’s not art at all. Graffiti is to many a form of vandalism. Some who paint it may think that way, but others see it as a serious form of art, and they see themselves as serious artists. In some cases graffiti artists explain the thinking behind their creations but more often they are anonymous, and the view is left to draw his or her own conclusions.

It’s reasonable to think that much wall art is serious, and sacred might be a proper term for some of it. Other wall paintings are malicious; slashing or covering earlier works out of jealously, anger, or emotions we cannot fathom. Some is whimsical or notational, like“Kilroy was here, 2015,” and its like.

In cities some street art contains gang symbols and messages. Art that appears inscrutable to the general public (myself included) may have a clear meaning to a smaller group of initiated. Something similar may have been the case when the petroglyphs were carved, too.

Gangs over-write each other's symbols, but that is far from the only reason people write over existing art. Some simply want space for their creation. Others are jealous. Some of the notion of cleaning up "non-approved" art with something else. If we cannot understand the dynamics of graffiti now, how can we possibly understand the dynamics of 2,000BC?

Most of the modern day tunnel art will be gone 2,000 years from now, but some will probably survive. When the petroglyphs are contrasted with the graffiti of today – lining a modern railroad trade route – we may wonder if they were the outdoor art of that era, lining the trade paths of that day. Perhaps what we see is just a fraction of what was once there, and the reason the symbols seem jumbled and indecipherable is that the art was created by many people with many goals and intentions, and there was no coherent meaning.

We tend to interpret arrays of art (petroglyphs) or arrays of ruins (towns) as if there was a common purpose or an overall guiding theme. As today’s graffiti makes clear, that is not always the case today and there’s no reason to think the street art of times past was any different.

If an archaeologist of the future were to try and understand our civilization from the symbols in the Donner Pass tunnels, what would they conclude? The train tracks have been removed from the tunnels, so their overall purpose might not be apparent to a later observer. Would a future archaeologist assume a purposeful relationship between the tunnel and the paintings?

Recently some scientists have looked at the style of cave paintings in Europe and suggested the artists may have been autistic. We could ask the same about today’s graffiti artists. How many of them may be autistic? The scientists found parallels between some cave art and the drawings style of known autistic artists today. The same parallels may be found in contemporary graffiti, just as other graffiti is of different style.

It’s interesting to think that autistic people may have been creating art for tens of thousands of years. And non-autistic people have been doing it just as long. Looking at the jumble of styles on Donner Pass today it’s clear the two groups co-exist now, and the evidence of European caves suggest the same situation prevailed in the distant past.

If today’s graffiti art is anonymous, yesterdays is even more so. In some cases, modern art comes with readable messages, but all too often its meaning is in the mind of the viewer, and we can never know if our interpretation bears any similarity to what was in the creator’s mind.

Some things can never be understood.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Crossing the Sierra on the Way to the Pacific

noreply@blogger.com (John Robison) — Thu, 16 Aug 2018 18:35:00 +0000

Headed west through Truckee, California, the road starts climbing as you approach Donner Pass. For thousands of years Indians used this route to journey from the inland plains to the Pacific coast. Today we see their legacy in petroglyphs on the flat hard granite just below the summit. These carvings are thought to be two to three thousand years old, but no one really knows.

Some symbols are suggestive, but their precise meaning isn’t known either. The marks are cut on a gently sloping stone plain. I've got a separate essay on them here, if you are curious.

Petroglyphs are visible beyond this marker at Donner Summit

In 1844 the Stephens-Townsend-Murphy party followed the old Indian trail past present-day Donner Lake and over the pass, becoming the first settlers to use the route. In the fall of 1846 the ill-fated Donner party tried to do the same, but early snows blocked them at Donner Lake. Half the group starved and the survivors resorted to cannibalism, giving the lake and pass the name it’s known by today.

Donner Lake seen from the pass. The Central Pacific (now UP) rail line clings to the slope on the right

Over the next 20 years thousands of settlers used Donner Pass to reach the promised lands of California. The granite was rough and unforgiving, forcing settlers to dismantle their wagons and haul them over rocks, with many losing their belongings and even limbs or lives in the process.

When talk of a transcontinental rail link materialized, the route was surveyed through Donner Pass. Trains need a constant gentle slope, without up and down, so the route they chose was a bit south of the footpath and wagon road. The two paths do remain in sight of each other across the pass. The trail goes up and down over terrain to follow the most direct route. The rail line is cut at a constant angle into the sides of the mountains, clinging to them like a pasted-on stripe.

In the spring of 1868 the Central Pacific Railroad completed the laying of track over the pass. It took a crew of mostly Chinese laborers five years to cross the mountains, with numerous tunnels and cuts. The longest is tunnel #6, at 1,659 feet.

These tunnels were dug entirely by hand, with some assistance from draft animals and explosives. Thousands of laborers died in the building of the line, with most unknown today. The rough hacked appearance of the tunnels make a sharp contrast to the finished highway tunnels we pass through today.

Even at the height of summer tunnel 6 is dark and cold. Light barely penetrates the quarter-mile to the center; the photos above were made with the help of some scattered sunlight, my own miner's headlamp, and a Leica M10 camera at ISO 50,000 - almost seeing in the dark.

The shorter tunnels are not as cold, but there is still an eerie feeling inside them. It's easy to imagine the ghosts of the Chinese laborers, and the many railroaders who lost their lives on this pass.

The builders of the railroad also built a wagon road to bring up workers and supplies from Truckee. In 1914 that construction road was rebuilt as the Lincoln Highway, the nation’s first transcontinental auto road. Vestiges of the Lincoln Highway are visible through the pass today, including this overpass that carried the road under the rail grade before the summit tunnel. Compared to overpasses today this one looks tiny, but the biggest thing that went under it back then was a Ford Model T.

In the photo above a mother and child stand in front of a Lincoln Highway underpass. This road has vanished today but portions still carry modern data cables as evidenced by the yellow warning post.

Railroad engineers had assumed they could keep the rail line open through winter storms by running plows back and forth. They did not foresee the amount of snow that would fall. Donner pass usually sees thirty feet of snow, and sometimes twice that. Snow lingers on the mountainside well into summer. Not only did the snow bury the lines, avalanches swept the threads of track into the valleys below, sometimes taking trains and passengers with them.

The answer was snow sheds, miles of structures that protected the tracks from snow and hopefully allowed avalanches to pass over harmlessly. By the early 20^thcentury the original wood snow sheds had been replaced with concrete, anchored to the mountainside with heavy steel rods and girders.

In many places the railroad appears to cling to sheer cliffs, and inside the snowsheds that is evident with rock wall on one side and concrete on the other.

The image above shows a snow shed from outside. The image below is the same shed, inside. Light streams in through the slits in the walls, which are enough to give weak illumination without filling the shed with snow.

Outside the concrete is a few feet of flat ground and then a drop of one thousand feet or more into the valley. The rail line climbs to 7,100 feet at the top of the pass. The edge is visible in the photo below:

Another interesting feature is the Chinese wall, so named for the laborers who built it, with stone alone. This structure carries the rail line across a dip in the contours. There is no mortar in the main embankment, which carried increasingly heavy train traffic for 100+ years. There is post-construction mortar in the upper retaining wall; both are impressive examples of stonework. They are built from granite cut for the tunnel bores.

This retaining wall held back winter avalanches and supported massive freight trains for 130 years, just as the original Chinese stone masons built it.

This is the hiking trail down from the Chinese wall. This is probably not much different from the path the Indians and original emigrants trod:

Here is another filled embankment. You can see a snow shed entrance at the upper right. The slope is all fill, carrying the railroad over the low spot. Huge amounts of fill were required in areas like this to prevent being washed out in floods or avalanches.

In this next two images you can see a smaller rock wall. This is a built up section of the construction service road, which later became the Lincoln Highway for early motorcars.

This view looks up at the Chinese walls. The trees give a sense of scale

In 1993 the Union Pacific abandoned the six mile section at the top of Donner Pass in favor of a newer three mile tunnel through adjacent Mt. Judah that carries the rails under the worst of the summit conditions. The photo below looks west, shortly after the rails emerge from the Mt. Judah tunnel:

Since then the abandoned tunnels have become a destination for hikers. They are also a destination for urban artists, few of whom braved the threats of trains and railroad police before the tracks were taken up. The tunnels today have an eerie feel, even looking in from outside.

The tunnels are filled with graffiti:

In the photo below I am walking through a snow shed, which transitions to a tunnel a short distance ahead. The light at the end is the sun illuminating the exit, and not an oncoming locomotive.

More graffiti:

This image shows how massive the tunnel construction has to be, to survive the onslaught of winter snow and slides:

A shaft of sunlight streams in through an opening in the wall. The people in the image give a sense of scale. Look at the size of the concrete columns that reinforce the roof. That is necessary in areas that may be hit with avalanches. Why the height, you ask? In olden days the tunnels needed to be tall to hold and diffuse the steam locomotive smoke. Today they need height to accommodate double stack containers, such as these cars headed west through Truckee:

If you want to see this for yourself take the Donner Pass Road west from Truckee. There are exits for the road on I-80. Climb to the overlook bridge parking area and walk across the road and downhill a few hundred yards to the trail up to the petroglyphs. From there the trail goes up to the Chinese walls between two of the tunnels. Tunnel six will be on your right, to the west.

The images in this essay were taken with a Leica M10 camera and a Leica 28 2.8 lens. All images were shot hand held at shutter speeds ranging from 1/500 to 1/2 second. The rangefinder system has an advantage focusing in the dark, compared to more automated cameras where focus would tend to hunt or be wrong. The M10 finally gives Leica a body whose sensor really performs to the level set by cameras like the Nikon D5 SLR. Leica lenses have always been superlative, and their manual nature forces the photographer to think more before each shot.

I certainly could have taken these shots with a D5, but doing so would have required a tripod and it would have been a much bigger production to get it up there. Smaller point and shoot camera could not have delivered the results of the M10 in the tunnels, though they would have been competitive outside. Photographers always have to trade quality against size and portability.

When photographing landscapes like these I like the slow reflective nature of the Leica camera, combined with the top-shelf image quality.

(c) 2018 John Elder Robison

Thoughts from INSAR2018 Autism Science in Rotterdam

noreply@blogger.com (John Robison) — Thu, 10 May 2018 13:03:00 +0000

Every day of #INSAR2018 brings a new round of scientists presenting their research. They are sorted into rough categories with psychologists, social scientists, and anthropologists being among today’s presenters.

As an American I was pleased to see that the majority of research was not from America, or indeed from any one country. Great Britain is smaller than the USA but there were as many presenters from there today. There were also scientists from countries in Africa, Asia, and South America. The Australian contingent was there, as were the Russians.

When looking at posters from developing nations I noted they were all focused on parents. A poster might be titled “Life with Autism in . . .” and then the description says “Interviews with parents in . . . .”

As an autistic adult from a country where we have a #neurodiversity culture I found those posters (there were many of them with that format) troubling. I asked the researchers if they recognized that they were not studying life with autism, but rather parental interpretation of life with autism. Accurately studying life with autism means studying actual autistic people, not people who watch us.

Responses varied. The most common response was that the kids in the studies could not all be interviewed because they had limited language, were too young, etc. Some researchers said they would like to study actual autistics but did not know any older kids or adults. Some said autism was just getting recognized in their country, and they did not have any population of diagnosed adults to draw from.

It made me wonder if we could jump start the process of awareness and understanding but I don’t know if there is a way to do that

Neurodivergent People and the Law

noreply@blogger.com (John Robison) — Mon, 16 Apr 2018 17:35:00 +0000

Today we will look at how neurodivergent people come in contact with the legal systems in America. In this country individuals may engage with the civil or criminal courts, or both.

Neurodivergent people are more likely to be disabled – either visibly or invisibly – as compared to the general population. People with disabilities often seek legal assistance or protection. That is usually a civil matter. Examples may include:

Getting a child evaluated for developmental disabilities, so that they can get services and supports in school.
Once a student is evaluated and a plan in in place some school parents and school districts are unable to agree on the services needed or provided. In such cases parents may turn to attorneys for help.
Adults who cannot access things or places may turn to government agencies and attorneys to interpret or enforce laws like the ADA.
Adults may seek legal assistance with workplace accommodations or with workplace issues.
Parents may seek guardianship for disabled children. Disabled people may challenge others’ guardianship over them.

Neurodivergent people are likely to act different from the average person particularly in stressful circumstances. This may be because they perceive situations differently, or because they respond differently, or because they don’t pick up messages that others receive, and therefore don’t respond at all.

ND people are more likely to have trouble with police and first responders, by not answering questions, not answering as expected, or responding differently to being touched.
ND people are more likely to be isolated, and may be more vulnerable to adopting fringe ideologies that can lead to societal conflicts.
ND people are more likely to be poor and socially isolated. This translates to a lack of community support and greater vulnerability to interactions with law enforcement.
Being neurodivergent magnifies an individual’s chances of mistreatment, particularly for members of marginalized groups.

Society has a duty to protect its members. However not everyone wants or needs the protection. Sometimes protecting us from one thing subjects us to harm from another. That makes for a difficult ethical landscape.

Some of the problems encountered by ND people can be resolved with the help of attorneys. Other problems are addressed by local courts. When a court decision seems unjust it may be reviewed by the Supreme Court, and our interpretation of the law may change. Elected officials may change or establish laws and regulations.

When laws and regulations change and evolve they affect all of us.

Autism and Mercy in Capital Crimes

noreply@blogger.com (John Robison) — Fri, 13 Apr 2018 13:45:00 +0000

In the past decade autism has been diagnosed or suggested in a number of high profile spree killers. Most of the conversation to date has centered on three facts:

· People with autism are more likely to be victims than perpetrators of aggressive violence.
· In many cases spree killers kill themselves, or are killed by police, and no official mental health diagnoses emerge. Suggestions of autism or anything else are therefore speculation which is rightly criticized as inflammatory;
· Even when a credible diagnosis exists there is considerable dispute about any role autism may have played in shaping the defendant toward the crime.

All three of the issues raised above are real. No matter what the answers are one is led to this fundamental question: Should society treat autistic defendants differently than other kinds of defendants? Why or why not?

In June of 2002 the US Supreme Court ruled that executing people with intellectual disabilities violated the Eighth Amendment prohibition against cruel and unusual punishment. That decision, known as Atkins, had far-reaching implications.

The Court made several arguments, one being that people with intellectual disability may understand a specific act (such as shooting someone) but lack the intellectual capacity to understand the moral wrong of their action. Executing them for the act would therefore be wrong. Society has generally agreed with the Court. But what are the boundaries of the decision? What exactly defines an intellectually disabled person?

Death penalty opponents saw that decision as “chipping away” at legal execution, by carving out a protected group of people. Some thought that opened the door to the identification of other protected groups.

To my surprise, advocates for intellectually disabled people were not unanimous in praise of Atkins. Some opposed it; arguing that the court's opinion that ID people should be protected because they could not tell right from wrong would provide a basis for discrimination against them in more prosaic circumstances. Might the court's decision support denying an intellectually disabled person a job over imagined inability to tell right from wrong with respect to stealing money?

It’s hard to know if Supreme Court decisions trickle down to that extent but it’s clear that people think they do, or fear they will. Intellectually disabled people are certainly subject to many forms of marginalization. Observers make a leap from looking at a crime and theorizing why it was committed, to identifying people who have some imagined similarity to the defendant, and considering how those people may act in a less extreme context.

You might call this armchair psychology at its worst; thinking “a killer didn’t know right from wrong and he’s intellectually disabled,” to imagining the convenience store you manage, and how an intellectually disabled employee might harm you. Crazy as that sounds many of us have seen it in action.

At the same time, it’s true that some people don’t know right from wrong, and there is a strong moral argument that they should be protected from execution for doing a thing whose implications they cannot understand.

Note that the court only addressed the question of execution. They did not have issue with the idea that society deserves protection from criminals, whether intellectually disabled or not. The justices did not in any way equate intellectually disabled with not guilty.

The justices extended their thinking three years later. In March of 2005, in Roper vs. Simmons, the Court held that the Eighth and Fourteenth Amendments forbade the execution of offenders who were under the age of 18 when their crimes were committed.

Justice Kennedy, writing for the majority, said: When a juvenile offender commits a heinous crime, the State can exact forfeiture of some of the most basic liberties, but the State cannot extinguish his life and his potential to attain a mature understanding of his own humanity.

That application of a controversial idea from Atkins was not questioned in this context because the intellectual limitation was grounded in youth as opposed to so-called permanent disability. A subsequent decision extended the protection of youth to age 21.

Prior to Atkins and Roper the court recognized other situations where individuals could not recognize right from wrong. Over the years those arguments led to the idea of psychiatric hospitalization instead of prison in cases of insanity, and mercy for those who committed crimes in the heat of passion.

We now face the next step in the application of this path of thinking. If a person who cannot understand the moral implications of their acts must be protected, and an undeveloped mind falls under this protection, then a person whose mind is undeveloped through the combination of youth and developmental delay should be protected by extension of the arguments in Atkins and Roper.

Autism is a developmental delay. That means the cognitive abilities of a young autistic adult may still be those of a child, even some years into legal adulthood, which should qualify them as part of the protected group. Furthermore, there is considerable overlap between the autistic and intellectually disabled populations so the original application of Atkins may be arguable there too.

Autism is one condition that causes delayed moral maturation in some non intellectually disabled people. There are other possible causes, which raises the point that one’s ability to know right from wrong in the mature way expected by the Court does not magically appear on one’s 21^stbirthday. Some come to that ability sooner, more later, and a few never get there.

One challenge the public faces when applying and understanding this reasoning in high profile cases is the nature of the crimes. What if the young person who supposedly did not know right from wrong killed a number of kids in school?

The truth is, all capital murder cases are horrific in their details. We talk dispassionately about how intellectual disability should protect Atkins from execution for what he did, without giving much thought to what that was. In fact he willingly abducted, robbed and murdered an innocent person he and his friend found at a nearby convenience store. Roper participated in a break in and robbery, after which they tied up and blindfolded their victim, drove her to a state park and threw her off a bridge.

In these decisions the justices recognize the merciful nature of an advancing society, and the recognition that it’s morally wrong to execute people who cannot understand the implications of their actions, for a variety of reasons. The argument for extending the protections set out in Atkins a bit further is not without merit. However the absence of definite boundaries makes its definition far from clear.

There is another moral issue at play, which is that the justification for protecting a killer with a cognitive disability may contribute to marginalization of many innocent people with the same cognitive disability. They might feel the greater moral imperative lies with protecting themselves, even if that bodes ill for the killer.

Some people (a large part of the US population) are morally opposed to all executions, and so see this as superfluous. Others (also a significant group) support the death penalty but make exceptions for a small number of people. A smaller minority of Americans support the death penalty for all, in the case of most serious crimes, and therefore disagree with Atkins and successive decisions.

These are difficult questions, with unexpected complexity.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Autism - Ability, Disability, and the ICF Core Set

noreply@blogger.com (John Robison) — Sun, 08 Apr 2018 01:50:00 +0000

How do you define autism? Five years ago I became an autistic member of the steering committee for the World Health Organization’s Autism ICF Core Set project. This January the Core Set was released. You can read it here:

http://journals.sagepub.com/doi/full/10.1177/1362361318755522

You can read about the process in our group’s earlier papers, which are listed in the above article.

The Core Set identifies the ways autism affects us, and gives a better focus for understanding and study. One thing I am proud of Is that this represents the first time the WHO has recognized both disability and exceptionality in a condition. Before autism, the WHO’s descriptions only described degrees of diminished function. Now, with the autism set, we recognize that exceptional abilities in certain areas of function can be just as characteristic of autism as disabilities in others.

For the first time a WHO definition encompasses what we call social and medical models of autism by integrating how we engage the wider world into the characteristic description of how autism shapes us.

It’s also noteworthy that this is one of the first (if not the first) Core Set to be developed with the input of actual affected individuals.

From the introduction to the Core Set peper:

The use of ICF may foster an approach of managing ASD that emphasizes individual abilities, disabilities, and the context that has an impact on the individual’s functioning. This approach is potentially meaningful for several reasons (Bölte, 2009; Escorpizo et al., 2013). First, not only is functioning often perceived as less stigmatizing than psychopathology or diagnosis, but problems in functioning are also often the reason for initial referral to services and focus for interventions rather than psychopathology itself. Given this, aspects of functioning are likely to be more tangible and meaningful than psychopathology/diagnosis to individuals with ASD, their families, and society as a whole. Aspects of functioning are also well suited to describe an individual’s real-life challenges and to guide individual intervention planning (Castro and Pinto, 2013). A functional lens may enable better calculation of health-related service costs (Hopfe et al., 2017; Schraner et al., 2008). Finally, individual descriptions of functional abilities and disabilities may also enhance communication between individuals on the autism spectrum, their environment, and experts. The ICF highlights the influence of the environment, stressing its positive and negative role in influencing outcome. Recognizing that environmental factors influence an individual’s outcome provides an opportunity to change those factors toward outcome improvement. It is also important to note that the ICF offers a framework to assess strengths, rather than just disability.

The Core Set effort was organized and led by Sven Bolte, Elles De Schipper and their colleagues at Karolinska Institute in Stockholm and elsewhere. I’m proud to have had the chance to assist in the effort and look forward to continuing in work like this, and being joined by other autistic researchers and concerned individuals.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Twelve Years of Writing on Autism

noreply@blogger.com (John Robison) — Tue, 27 Mar 2018 14:53:00 +0000

It seems like yesterday that I started blogging about autism. Actually, it was spring of 2007, shortly after getting a contract for my first book. The first essays were about Look Me in the Eye and the publishing process. At the time I didn’t regard myself as having any special insight into autism. I just knew about my own life and that was what I wrote about.

One of Steve Heller's fabulous robotic creations

But readers saw far more in the words than I, and invitations to speak to schools and autism groups began arriving almost immediately. I was something of an anomaly. In 2007 an openly autistic adult of my age (49) was pretty unusual. It’s easy to forget that when we see how visible autistics are today.

The message that resonated most was that we can grow up disabled by autism and become successful adults, also thanks to autism.

Some people wanted to hear about my life and extrapolate from my story to their own family. Others wanted to talk about problems and treatments; some familiar to me, and others not. The book appeared that September to considerable fanfare, which proved to be timely. Advocacy organizations of the day were portraying autism as a scourge, and autistic people as zombies, or worse. What I published was – unwittingly – an antidote to all that.

Many people believed autism was an emergent epidemic thanks to lead and mercury poisoning, allegedly delivered through vaccines. With that as background my story of childhood disability followed by adult success was timely. Look Me in the Eye provided a needed counterpoint to the prevailing autism narratives of the day.

I never doubted that my life had followed an unusual trajectory and might not be easily emulated. At the same time I knew the relentless negativity accompanying other depictions of autism wasn’t universal either. I instinctively resisted the suggestion that I was a product of evil pharma conspiracy, if such a thing even existed.

With the passage of time I met many autistic people – adults and children – and was exposed to all sorts of challenges and abilities that I had never associated with autism. I had not started out as an autism expert, but within a few years I’d met more autistic people than most clinicians meet in a lifetime and I was well on the way to acquiring expertise in that topic.

Through that time most of my readers were parents. They had children of all ages with most being 5-15. Some said my writing felt like a breath of fresh air with all the horror stories that surrounded us. Today many of my readers are autistic and they naturally have a different take on things. In some cases autistic readers shared my views of autism and diversity while other autistics had sharply differing opinions.

Now I can see why I felt so different. As an adult who had moved out into the world ignorant of my autism, I was well established in a career before receiving my diagnosis. I was successful before I learned I am autistic, which put me in a different position than kids today. When they learn about their autism after being evaluated in response to some behavioral or academic problem the diagnosis became an explanation for failure, with no good side. At least at first.

The autism diagnosis explained previous troubles for me too, but from the beginning I could see how my differences also facilitated success. And most important, I had a wife, a kid, a job, and a home of my own.

Eleven years passed. The moms who embraced my stories in the beginning saw their kids group up. The fears they had in 2007 have hopefully been replaced by acceptance and joy at who their kids became. Messages like mine were no longer quite as urgent, at least for those moms.

Meanwhile kids are diagnosed with autism every day. New parents find Look Me in the Eye, and it’s just as relevant now as in 2007, but there are now far more books to choose from and it's now one narrative among many.

The young people I spoke to in 2007 have mostly grown up and they are living their lives. Some are active in autism advocacy. Others are concerned with getting through college or making a living. I've faced the same things myself. My writing has opened up many wonderful opportunities. It's taken me all over the world to speak, and introduced me to many educators, therapists, and scientists who are committed to a better life tomorrow for the autistics of today.

I've learned a lot about the medical and social challenges many of us face and I'm proud to serve on government committees to make plans to address our many needs. I'm also proud to be part of the first initiatives to teach neurodiversity as culture in American colleges. Now I'm eager to see more results!

Meanwhile I continue to write a mix of books and articles. Some of my first readers are still friends and readers today. Some have books of their own now, and others work in various forms of advocacy. In some cases our lives have become more intertwined as we develop courses together, work on government policy, or volunteer in autism organizations.

New readers connect with me all the time, via online messaging, postal mail, and in person at events. With books like mine it seems like most people pick them up “when needed,” which is different from reading a series of thrillers, where the next book is eagerly awaited by legions of fans. For those authors many of tomorrows readers are there today just as they were last year.

A writer of thrillers is always “current” in the sense that his characters live in his mind. For me, the issues I write about are constantly changing and evolving. Neurodiversity has taken off in the past decade, and openly autistic people are everywhere. Schools are focusing on teaching autistic people, and universities are establishing autism programs. Workplaces are changing too, and it’s a full-time job keeping up with all of it.

The most important thing I have learned since Look Me in the Eye is about responsibility to my community, which is #ActuallyAutistic people. In my opinion, anyone whose writing is read by a large number of people has duty of care and I try to follow that by not ridiculing or bullying, and by presenting the best ideas I am able.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

W&M Neurodiversity - class on brain stimulation

noreply@blogger.com (John Robison) — Mon, 26 Mar 2018 14:41:00 +0000

Neurodiversity Class – Monday March 26

Brain Stimulation

In our class on brain stimulation I’d like to present some emerging therapies that offer the promise of changing brains in elemental ways. Changing brains means changing personality, intelligence. Such an action has the potential for altering one’s very hopes and dreams, and that carries significant ethical implications for anyone who advocates for the therapy, whether as a parent, guardian, or professional. It also has implications for any adult who considers partaking, or any child or person under guardianship who faces having it “done to them.”

Bertrand the Brain Dog, waiting outside the hospital.
Dogs like Bertrand made an unheralded but substantial
contribution to neurological research over the past 150 years.

The development of these therapies heralds a new era for humanity. Cognitive attributes that were thought to be immutable turn out to be flexible. Ideas like "That's evolution, nothing you can do," or, “God made him that way” will be supplanted by the possibility of human-driven change.

As new cognitive therapies and treatments emerge they will present great opportunity to help people. Some of those people will have profound and long unmet needs. Others will have wants. Some may not want treatment at all, yet have it thrust upon them. With tools as powerful as these ethical questions will surely arise.

Let’s discuss those issues with the help of several scenarios.

Scenario #1:

The brain is an electrical organ. Billions of neurons are connected with almost uncountable numbers of microscopic threads – axons and dendrites – carrying signals from one neuron to another. The network builds itself and then fine tunes itself throughout our lifespan.

In addition to the natural process of development we can energize and change the network. Chemicals can travel through the bloodstream into the brain where they change the properties of that network. That’s how recreational drugs and psychiatric medication work.

Electrical stimulation can enter the brain through electrodes applied to the scalp or through wires implanted in the brain. This is called (transcranial) direct brain stimulation, or TDCS

Circuits in the forebrain may be energized and stimulation with infrared laser energy, where photos of laser light penetrate the skull and are absorbed by molecules in the neurons, stimulation them to action. That is Transcranial Laser Stimulation.

The circuitry in the outer layers of the brain may also be energized or suppressed through the process of electromagnetic induction. That is Transcranial Magnetic Stimulation, or TMS

The therapies above are all real. Psychiatric meds and recreational drugs are widely used. TMS and TDCS are being studied for some therapies and deployed for others. Laser therapy is still in the research stage but shows promise.

Now consider this scenario:

A therapy is used to relieve anxiety and depression and it works well for 30% of patients. 10% report slight benefit. 5% feel worse. 0.02% commit suicide and can no longer be evaluated. The causal connection between the therapy and suicide is disputed because some percentage of the population is destined to commit suicide anyway.

13 of every 100,000 people in the general population kill themselves every year.

20 of every 100,000 people in the treatment kill themselves every year.

30,000 of every 100,000 report a benefit

You are a regulator. What do you do? Is the risk real, and should a therapy with that risk be allowed?
You are a therapist. Do you take the chance and recommend therapy, or take the safe route and talk instead?
You are a patient. Do you do it?

Scenario #2:

A ten-year-old autistic child has a strong logical mind, but very little sense of the emotions in the children around him. He has no friends and is very lonely. At the same time, he seems to be quite the prodigy on the computer.

He says he’s going to be a computer scientist when he grows up. He says the thing he wants most of all is to have friends who will play with him at his birthday party.

You have been told about a brain therapy that will rebalance his brain, allowing him to see emotion in other kids. The therapy has worked for other kids, and he is likely to gain the ability to make friends, but he may lose interest in logic and computers. Nothing like this existed when you were a child; the very idea was the subject of fantasy movies. But it’s real now and some applications are even covered by health insurance.

You are his parent. Do you give him the therapy? What do you tell him?
You're ten years old. What do you want most in life? Are friends more important than intellectual superpower? Is intellectual superpower important to you? Think back a few years . . .

Scenario #3:

Thanks to the convergence of brain stimulation and brain imaging we know that your brain and mine react the same when we see a red ball. We know that red, green, or blue trigger specific patterns in our brains, and when we use eye tracking to know where we are gazing and brain imaging to see the reaction, a computer can now tell what color we are looking at.

Shapes and objects form distinct and recognizable patterns too. Supercomputers can accurately resolve thousands of common objects including cars, airplanes, dogs, cats, guns and pencils. The computers can associate emotion too, separating any house from home, and any female from mom.

Science has delivered us the ultimate lie detector. The mind probe of science fiction is real.

You have a suspected terrorist in your custody. He is placed in the scanner and shown images associated with a recent bombing. You have identified the house where the bomb was made. The suspect’s brain lights up as home. You show a picture of the carnage of the bomb. The suspect’s brain reflects a pattern of pride.

You are a government leader. What do you do with the suspect? Is a trial needed; would it serve a purpose?
You are a scientist in the program. Should your newfound power be kept secret?
You call yourself a freedom fighter. The enemy calls you a terrorist. How do you combat this machine?

This technology is [very likely] in development now (it’s classified.) The practical difficulty of getting uncooperative subjects into the scanner and getting them to view materials may delay deployment somewhat.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Lobbyists and Autism Advocacy

noreply@blogger.com (John Robison) — Sat, 17 Mar 2018 21:22:00 +0000

We often read about lobbyists in the news, and in last week’s neurodiversity class we talked about what lobbying actually means. The popular perception is that of polished lobbyists wining and dining senators in upscale restaurants. The reality is often rather more prosaic.

Before new rules or programs are enacted there is generally a period when government agencies seek public comment. While anyone can send comments to government agencies or elected officials, in-person comments are often more influential. A lobbyist who travels to Washington and states a position can engage in dialogue with government. Such a person is much more likely to advance whatever position they bring with them than a write-in commenter.

If the situation under discussion is one that affects autistic people – like housing for the cognitively disabled – there is widespread agreement that a lobbyist who represents an autism society has a duty to do their best to represent all autistic people.

But what if another lobbyist comes to comment, and he represents a home builder’s association. Now imagine that the solution he is there to advocate for is in opposition to the solution preferred by the autism community. Where does that lobbyist’s duty lie?

The majority of students in our neurodiversity class felt that the home builder’s lobbyist had a duty to his employer and should advocate for their position no matter what the autism community thought.

A large number of people agree with this position, justifying it with arguments like, “there are winners and losers in every negotiation.” Some dissenters believe corporations should have consciences, and they should not do things that make them money to the detriment of large groups of people.

Now imagine that the homebuilder’s lobbyist was accompanied by a team of assistants who called and set up meetings with many of the government officials central to the decision. When the homebuilder lobbyist spoke he had a very impressive multimedia presentation and worked the room afterwards during the break. Meanwhile the public was represented by a few families who came to speak, and two individuals from autism societies, neither of whom had any of the resources of the home builder’s association.

Who do you think had the greater influence?

This example is based on real scenarios from my own time in government advocacy, and it speaks to the question of who our government represents. When lawmakers or rule makers hear from commenters before making a decision, the commenters tend to be lobbyists who speak for groups as opposed to individuals speaking for themselves. When individuals do speak for themselves it’s been my observation that the words of lobbyists on behalf of groups still have more impact.

That should not be surprising; no one should wonder that an experienced professional lobbyist would be more successful at making his arguments heard than a neophyte visitor to Washington.

However, this raises a fundamental question about the role of government: Are we a government of and for the people, or is government for the often-corporate lobbying interests? Lobbyists can work for advocacy groups on behalf of affected populations, or they can work for advocacy groups on behalf of corporations. They can also work directly for corporations.

Many times, lobbyists work for groups whose names are misleading. For example, research might reveal that “Citizens for Fairer Energy Policy” is actually a trade group for coal miners. It’s often hard to discern where the loyalties of lobbyists lie and it’s even more difficult for government officials to discern the policies that will provide the broadest public good in the face of such polished and well-funded corporate lobbying. Average citizens are generally unable to do anything like that, which leaves lawmakers listening only to the rich and the corporate to make decisions that affect everyone.

As the example of the autism society representative and the home builder’s lobbyist shows, the loyalties of many if not most lobbyists are not with the broad public. Many of the government decisions shaped by lobbyists are not Republican-Democrat in nature at all. Rather, they are “benefit the public” versus “benefit certain corporate interests.”

Even when lobbyists represent a group, the group might not be the one implied by their name nor might it be what you expect. For example, when judged by their name it sounds like Autism Speaks should be the voice of autistic people. Yet they have - from the beginning - been primarily a voice of parents and grandparents as opposed to actual autistic people. Autistic people come in all ages and abilities. Given that, and the fact most of us are adults the idea that parents of autistic children should dominate the conversations seems ridiculous but in their case that is what happened. The sad truth is that many lobbying groups are not what their names imply and it's very hard for an individual to know who truly represents their interests in Washington.

Cynics imagine government is corrupted by huge cash contributions to re-elect public officials, or lucrative post-government employment offers once compliant public officials leave office. While those things surely happen the much more insidious concern should be the massive resources corporate interests pour into lobbying and how that renders the opinions of individuals – the people government is supposed to represent – largely invisible.

The situation today is dire, but it’s not hopeless. Groups like the Autistic Self Advocacy Network demonstrate that a group of passionate people can – with very little cash expenditure but a lot of thought and commitment – move public policy in directions that are beneficial to most people. They also demonstrate that population groups who once had no voice (in this case, actually autistic people) can find voice in advocacy.

It’s tempting to say, “let’s just ban corporate lobbying.” But it’s not that simple. Public health authorities will continue to ask questions like, “what can the pharmaceutical companies do with this?” in response to proposed policies, and it’s necessary for their interest to answer for an informed decision. The goal should not be the silencing of corporate voices; rather it should be the putting them in proper perspective relative to the true public interests, which are those of the American citizens.

How might we accomplish this?

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

Neurodiversity and Government Advocacy

noreply@blogger.com (John Robison) — Tue, 13 Mar 2018 16:07:00 +0000

Thoughts for William & Mary neurodiversity class, March 14, 2018 . . .

What is government advocacy?

The most common form of government advocacy advances the goals of groups, which may be membership organizations, corporations, foreign governments, or other groups before our government (either state or federal.) Advocates may be professional lobbyists, lawyers, or concerned members of affected groups.

Advocates use their knowledge of issues, relationships, and experience in government to advance their agendas. In many cases they compete with – or are opposed by – other advocates with different agendas.

Often members of a group have divergent or mutually exclusive goals. Other times totally different groups focus on a single issue with identical approaches and objectives.

Most times, the group doing the advocacy defines itself and the advocacy. Other times, the central government defines the group, and seeks representatives.

There is another form of advocacy within our legal system. In that, individuals or groups advance their agendas through or on behalf of individual defendants or plaintiffs.

Are there other forms of government advocacy, and if so, what are they?

What can government do for the community of Neurodivergent people?

Government can do many things at the request of advocates. Among other things, it can . . .

Conduct research to find solutions to problems,
Study and develop medical treatments,
Institute protections from discrimination or marginalization,
Encourage employment of disadvantaged groups,
Provide protections, legal, physical, environmental, and other,
Directly employ members of a group in government service,
Provide housing, sustenance, and support to needy groups

Through legal advocacy, government can be encouraged to do a better job of sheltering us from harm, making our lives more comfortable, keeping us safe, granting us relief, or extending compassion or mercy in criminal sentencing.

How does neurodiversity fit in?

With respect to neurodiversity, there is no recognized group as regards government advocacy. That’s because neurodiversity is only a concept. It’s not a defined medical condition needing treatment. It’s not a defined population needing benefits or services. It’s not a recognized group needing legislative protection.

Rather, the concept of neurodiversity is that there is a subgroup of humanity who have inborn neurological differences that make them cognitively different from “typical” humans. These neurodivergent individuals learn differently, process information differently, and think and solve problems via different pathways. Compared to typical people they exhibit a mix of disability and exceptionality.

The most widely recognized neurological difference is ADHD. The next most common are OCD, Dyslexia, and Autism. Most (but not all) people outgrow or learn to manage the first three conditions by adulthood, so there is not a large call for adult research or support. Many autistic people have some level of lifelong disability severe enough to require support. Autism is the most visibly disabling of the neurological differences.

No government agency I know of recognizes neurodiversity as a movement or group with which they would engage in dialogue, or support. Rather, the government recognizes and supports the constituent groups who make up the neurodivergent community. This includes autistic people and their families, the ADHD community, folks with dyslexia, and the cognitive disability community more generally.

We may think of neurological diversity as conferring a mix of disability and exceptionality but in general the government only provides support and services to people with disabilities.

Who advocates for neurodivergent people?

Advocacy groups like the Autistic Self Advocacy Network, the Autism Society, the Simons Foundation, and Autism Speaks advocate for autistic people, but from different perspectives.

Groups like The Arc and Easter Seals advocate for neurodivergent people in the context of advocating for all people with cognitive disabilities or all people with disabilities.

Affected and concerned individuals advocate for specific medical conditions before our public health agencies (NIH, CDC, DOD.)

Attorneys, medical professionals and (only very recently) qualified affected individuals advocate for neurodivergent individuals in the legal system.

Why do people advocate in the neurodiversity realm?

Each advocacy group has its own agenda. Sometimes their advocacy is broad and deep with respect to our community. Other times it is very narrow.

The original neurodiversity advocates were the parents who advocated for educational, living, and employment supports for their neurodivergent children.

When we talk about advocacy for, say, autistic people . . . should parents be recognized as part of the community?
In this example, should teachers, doctors, and others who help and support autistics be part of the community?

The population of children diagnosed with neurodivergent conditions has exploded since the 1990s. The first generation of those children have reached adulthood and some have emerged as advocates. Some neurodivergent members of prior generations are also advocates.

How might the pre and post 90s’ generations of neurodivergent people differ in views and advocacy?
How and why might the opinions or goals of parents and children diverge?
When parents and children have divergent opinions, whose should be primary?

Educators have been overwhelmed by the surge in students needing special education services and accommodations. They advocate for better support tools and financial support. They may also advocate for injunctive relief from burdens imposed by government regulations they feel unable to meet.

Medical professionals advocate for research to identify the needs of neurodivergent people. This is an emerging trend.

More traditionally, medical professionals assumed they knew or could personally determine what was needed to help neurodivergent people, and they advocated for research or other support to do so.

Medical corporations advocate for support and protection to encourage or enable the development of medications and treatment devices.

What are some examples of government supporting the development of medications?
What are some examples of government protecting corporations who develop medications or treatments?
Should government take a role supporting or protecting corporations? Why or why not?

Individual government agencies have ideas that impact the neurodivergent population. They often state positions and then engage the public to defend or revise those positions. What would be some examples?

Should the armed forces ban people with autism and ADHD?
Should the rules that govern six college students renting rooms in a house differ from the rules for six cognitively disabled people living in a similar house?

When advocates approach the government to advance their views, how should government balance the goals of affected individuals who advocate for themselves or their groups, versus representatives of corporations?

If, as some have suggested, corporations are people in a legal sense, how do we balance their vastly greater lobbying resources against the concerns of individuals?
The Citizens United case is often cited in the context of corporate influence over elections. Are elections a unique situation or is there actually a broader issue of corporate versus individual influence over government policy making?
A corporation and an individual are clearly different, right? Merck pharmaceuticals is different from John Smith who takes Merck-made drugs. He and Merck may advocate for different things, or the same thing. If we distinguish between corporate and individual advocacy, on which side should we place advocacy from groups like autism societies, or educator’s associations?

When a person decides to engage in government advocacy on behalf of a group, like the population of neurodivergent people . . .

Should there be a qualification process for a potential advocate? Is there a process?
When an advocate speaks for a community, what is the moral imperative to advocate for the best of all, as opposed to what's best for the advocate?
Assuming an advocate is a qualified member of a community (a diagnosed autistic person on an autism committee, or a recognized member of a tribe on an Indian affairs committee) does the advocate have a duty to gain a special understanding of issues, or is general life experience enough?

How does neurodiversity advocacy differ from advocacy for other issues in the news today, such as gun control, women's reproductive rights, or gay marriage? Does it differ?

How would a William & Mary grad get into advocacy, either as a career, a personal passion, or both?

Careers in government,
Working for political consulting, public relations, or law firms that engage in lobbying,
Working for think tanks that generate research to inform lobbying (such firms share the building housing the W&M Washington DC campus),
Volunteering as an individual representative of a community to government,
Working as a group representative for community before government,
Expressing ideas which shape public policy through mass media

How else might you engage in government advocacy?

Interested in getting involved yourself?

Thoughts on advocacy from Britains National Autistic Society
Here are policy advocacy toolkits from the Autistic Self Advocacy Network
This blog talks about research at the Dept. of Defense and how you could get involved
The IACC (the federal autism committee) welcomes the public to its meetings by webcast or in person, and makes all records available online

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.

ADHD and what it tells us about society

noreply@blogger.com (John Robison) — Tue, 27 Feb 2018 02:55:00 +0000

Roughly 11% of kids age 4-17 have been diagnosed with ADHD according to 2012 statistics from CDC. More than 1.1% has been diagnosed with autism. Both conditions are much more commonly diagnosed in boys, which means one in 5 school-age boys has an ADHD diagnosis, and one in 20 has an autism diagnosis. Expressed that way, it's a lot of kids!

There is substantial overlap between autism and ADHD. Almost half the autistic population also qualifies for an ADHD diagnosis and they share genetic and neurobiological commonalities. Some people think of ADHD as a subset of autism. It's common for a child to first get an ADHD diagnosis, and later be re-diagnosed or additionally diagnosed autistic.

So-called social disability plays a large part in both ADHD and autism diagnoses. To paraphrase the current DSM5 these are some of the traits of social disability that a person with ADHD will exhibit:

· Has difficulty sustaining attention in tasks or play activities (e.g., has difficulty remaining focused during lectures, conversations, or lengthy reading).
· Does not seem to listen when spoken to directly (e.g., mind seems elsewhere, even in the absence of any obvious distraction).
· Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace
· Is often easily distracted by extraneous stimuli (for older adolescents and adults, may include unrelated thoughts).
· Fidgets with or taps hands or feet or squirms in seat.
· Often leaves seat in situations when remaining seated is expected
· Often talks excessively.
· Often blurts out an answer before a question has been completed (e.g., completes people’s sentences; cannot wait for turn in conversation).
· Often has difficulty waiting his or her turn (e.g., while waiting in line).
· Often interrupts or intrudes on others

If you are anything like me, it’s hard not to see yourself in the list above. I presented these traits to my students at William & Mary and everyone in class agreed they’d done each of those things at one time or another. The diagnostic behaviors are so common that I find it hard to pathologize them at all.

One of my psychologist colleagues pointed out that diagnosis is a matter of degree, and a trained psychologist is supposed to be able to discern the difference between “ordinary excessive talk,” and “pathological excessive talk.” I have no doubt that is exactly what the framers of DSM intend; indeed, they make that point in the supporting text. However, I have my doubts it works that way in real life.

Psychologists seldom wade into schools, looking for students to diagnose. Instead they respond to the entreaties of parents and teachers. “This kid is bouncing off the walls,” and “that one will never shut his mouth.” Some of those kids surely do have ADHD, but others may have nothing more than a case of impatient parents or sick-and-tired teachers. How many of today's kids would still get ADHD diagnoses, without the "supporting complaints" of adults?

I've described autism as a way of being; a mix of disability and exceptionality. Others may take issue, but I see ADHD the same. For those of us who grow up this way, it's how we are; not a broken state that needs repair even if medications do help some of us function better.

Another way to look at this would be to ask how many people would ask for help for ADHD on their own, as opposed to "getting helped" by adults who watch them. In my family we go both ways as regards embracing or declining ADHD meds, and I am sure lots of others feel the same.

Most cases of ADHD are diagnosed around age 7. Half those kids end up on Adderall, Ritalin, or some other potent drugs. Most times the kids have no say about receiving medication. In some cases, they benefit from the prescriptions, but in other cases the adults are the beneficiaries. The kids are tranquilized and robbed of spark and creativity. That feeling of drug induced flatness is a major reason adults refuse psychiatric meds. Even when the medications are beneficial there is a cost, and I believe we deserve the right to choose. How that is reconciled with parents rights over children is a question I don't have an answer for.

Medical professionals don’t like to see their diagnoses questioned, nor do they appreciate the suggestion that their evaluation and medication of a child may be strongly influenced by the representations of the responsible or referring adult. I think we’re right to ask questions. When we have a set of diagnostic definitions that are sloppy and imprecise, and so much is left to interpretation it seems inevitable mistakes will be made.

That is one reason researchers push for biomarker tests, but at this time none is available. If and when a test appears, I wonder what it will reveal. I think the sheer numbers of ADHD kids raise important questions. First, might ADHD be a set of behaviors that can come out in anyone, given the right circumstances?

Second, can any behavior set that is observed in 20% of boys rightly be called a pathology? Is it moral to make the preferred response medication for something that common, or is the ethical action learning how to deal with it non medically, which was our response in generations past?

The #neurodiversity movement got its start in the autism community, where people argue that certain traits of autism are part of the natural range of human diversity. Accepting that autistic traits occur naturally does not deny the very real disability of autism; rather it places it in a historical perspective. If autism is part of human diversity, and it’s always been part of us, what can history teach us about how we approach autism in this time of supposedly greater awareness?

If ADHD is 7-8 times more common, the neurodiversity arguments for it are even stronger. In this writer’s opinion, the reason we do not hear more from the adult ADHD community is that fewer adults feel disabled by ADHD, or they are diagnosed with both autism and ADHD but primarily engaged in autism advocacy. Few adults speak out for the rights of people with ADHD once they have the right to choose meds or not. They have their rights.

Another likely issue is that there is considerable shame in being diagnosed with a disability in our society. Most kids outgrow their ADHD diagnoses to the extent that they do not need support services as adults. Many ADHD kids are happy to leave that part of their childhood behind; feeling no need to engage in advocacy for the community as adults. Autism, as a lifelong disability for many, encourages adult advocacy.

By virtue of its ubiquity, ADHD is the leading example of neurodiversity in action. The current response of society to medicate it into submission, when contrasted with its commonality, should give all of us serious pause for thought.

In comparison, fifty years ago depression was a serious problem. Sadness and depression remain concerns today. ADHD was not an issue then, or at any previous time in human history. Why is it such a big deal now? Is this an example of how society has lost tolerance for a common set of behaviors and substituted medication for acceptance and patience?

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.