John Elder Robison

On Thursday, Dani Bowman, me, and a moderator from Intermountain Centers of Tucson Arizona held a Q&A and discussion before screening the film The Reason I Jump. Before the event Dani and I met with Niko Tax, a nonspeaking autistic fellow who’d written me the week before. This is the message he sent:
I am part of a group of young men with autism, who are non-verbal and communicate with letter boards. We were wondering if there might be time in your visit to speak with us as a small group there are about 6 of us. We often feel a little stuck about our future options to find successful ways to contribute to society.
I did not know if the message had been written by Niko or by a support person, and I did not know exactly how we’d communicate, but I agreed and on the afternoon of the event, he arrived at the hotel with two support people. We found a quiet corner and sat down. One of the assistants sat beside Niko and held up a letterboard.
For those who have not seen these, letterboards are about a foot square with the letters of the alphabet on one side and numbers and symbols on the other. Faced with the board, Niko began to type out. I A M G L A D T O M E E T Y O U. I answered that I was glad to meet him too, and I heard an immediate acknowledgement from him even as he began punching more letters.
This process – spelling to communicate – is controversial because the autistic person is dependent on the assistant. Yet I’ve had other non-speaking people use similar technology entirely independently, and that’s not controversial at all. In our weekend summer classes at W&M we’ve had several nonspeaking students use iPads or physical letters to spell messages and converse.
Another worry people express is that the addition of a facilitator leaves the listener uncertain whether they are hearing the thoughts of the autistic person or those of the facilitator. You can’t be sure unless you are there and looking at the words as they form. In this case I saw the words form in a very steady stream.
The dependence on a facilitator is also a problem because they presumably aren’t around 24/7, and how does the autistic person communicate in off hours?
Yet it works in some instances when independent methods like the iPad don’t. People are right to be skeptical for the reasons above, but at the same time, spelling with an aide may become the communication tool that works for some, even as it fails for or frustrates others.
I believe we need to be flexible and be armed with a wide variety of assistive tools because nonverbal people are nonverbal for a number of reasons, and there in no one assistive tool that works for all. Frustratingly, we have no good assistive tools for some of the population, and it’s self-evident that communication failure drives frustration and can lead to aggression and self-harm. During my time in government the development of communication technologies for nonspeakers was always a priority, but one where progress has been frustratingly slow.
Could Niko speak independently through an iPad? I don’t know. His assistant said the letterboard worked better because Niko had better gross motor skills than fine motor skills, and he did better moving his arm to the board than using his finger on a tiny keyboard.
Yet he somehow got a message to me through his phone – a succession of messages actually – and I never reconciled that.
There was no question about Niko’s desire to talk to me. I could also see him take in every word I spoke in response, and he sometimes shouted or grunted to immediately respond to something I said, while typing a more detailed comment.
H O W C A N I G E T R E S P E C T L I K E Y O U was one of the most poignant things Niko said to me. I told him many people could not believe an autistic person like me was able to write the words in Look Me in the Eye twenty years ago, but people accept that many of us can write and express eloquent thoughts of our own now. Just like anyone.
I told Niko that many people were still skeptical of nonspeaking people having something to say, and it was going to take people like him writing, posting, and publishing to change that conversation. Every person he talked to would be one more person who realized he had his own thoughts, needs, wants, and dreams. Just like anyone else.
People often assume nonspeaking people can’t make choices because they can’t speak. Given the right tools, many can. I wish I could say “anyone could” but that is not true with the current state of technology and knowledge.
Niko certainly had a lot to say, and later at the event, it was clear his friends did too.
I hope engineers and scientists find ways to help more nonspeaking people communicate effectively. I hope we develop and deploy tools that help Niko and others who currently rely on assistants the ability to communicate independently. The assistants still have a big role – in teaching people to spell and use the tools – and their time is best spent teaching people to be independent, as opposed to supporting a much smaller number of Nikos.
Afterward, when we were in the lobby, it was clear what a huge star Dani was to many of the younger attendees, thanks to her appearance on Love on the Spectrum.
Dani and I show a different flavor of autism that Niko and the autistics in the film, but we are autistic; all equal members of this community. As I told the audience, the more able of us have a moral duty to support the less able, and to ensure we all have access to what we need to be safe and secure.
I really appreciate Rose Lopez of Intermountain Centers for having the courage and determination to put this event together and for making Dani Bowman and I a part of it.

Sometimes things happen that are so awful, we have no words. Austin Hatch has worked in the J E Robison Service Co complex for much of his adult life. He's taken care of ambulances, buildings, Land Rovers, and vintage Rolls-Royces. Lately he has managed the restoration shop in the lower building here, and everyone who visits should know who he is.

Two weeks ago, Austin and his wife went into the hospital for the birth of their daughter. She is now healthy, but Haley died from complications of the birth.

I know - it's something that happened in ancient times, but it can happen today. She was just 37. Austin and his kids are devastated, and his stepmother set up a GoFundMe for their benefit. If you know Austin, or even because he's important to ma and all of us here, please consider a donation.

https://www.gofundme.com/f/support-haley-hatchs-family-after-brain-injury?utm_campaign=fp_sharesheet&utm_content=amp17_tb-amp20_t1&utm_medium=customer&utm_source=copy_link&lang=en_US&utm_id=97758_v0_s00_e0_tv2_a1dennhbfuxh29&fbclid=IwY2xjawRUyf9leHRuA2FlbQIxMABicmlkETFLamlsWTkwSElBZUhDUnB0c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHmZoDC614w-xOchFzGYBgWuy4zp3FBM_pLxlmOWeVBQcE7Y7yuabf-tCboUF_aem_p3JshXXInIz4AyP3D8zVVw

Donate to Support Haley Hatch’s Family After Brain Injury, organized by Marilyn Hlivko Haley has been a part of my life since she was just eight weeks old, st… Marilyn Hlivko needs your support for Support Haley Hatch’s Family After Brain Injury

When cancer rears its ugly cells

Last week, I headed to Newton, to Mass General’s Newton-Wellesley Hospital for prostate surgery. The doctors had diagnosed prostate cancer some years ago, and they’d been keeping a close eye on me. Now it was time to move from watching to acting.

It all started innocuously enough. Seven years ago, I felt fine but had a concerning reading on a routine annual blood test: high PSA. PSA stands for prostate-specific antigen. It’s a marker produced by active prostate cells, and when it rises, that suggests your prostate is growing larger, turning cancerous, or both. PSA levels rise slowly with age, but any rapid or large increase is cause for concern and investigation.

My primary care doc referred me to William Tran, a local urologist. He did a biopsy and found cancer in two of the prostate samples. Prostate cancer is the most common cancer in men, and one of the deadliest. He told me not to worry, it was a low grade cancer and not an immediate threat. Still it was cancer, and potentially deadly.

Frightening as that was, he advised what he called active surveillance. “You might be able to live for years without this getting worse, or it may change more rapidly, Dr. Tran had told me.” He would monitor me with blood tests, physical exams, biopsies other studies as needed. There were risks in waiting, but interventions also carried the risk of unwanted side effects. If the biopsy does not show aggressive cancer, watching and waiting is often the wisest move.

Six months later, my PSA rose more. Dr. Tran proposed a high-resolution MRI, for which he referred me to one of his mentors, Dr. Douglas Dahl at Mass General. That didn’t show anything definite. The biopsy showed cancer cells, but the MRI did not reveal any coherent tumor. I took that as encouraging. Another year passed, and Dr. Dahl did a more detailed biopsy, which suggested the cancer was not progressing very fast, and we relaxed for another year.

Some prostate cancers are very slow-moving, while others explode. The trick is to monitor closely enough to catch a change before it becomes deadly. With that in mind, the doctors maintained their vigil. Last fall’s MRI showed what looked like a tumor, and Dr. Dahl did another biopsy. Over the past twelve months, one of the two “quiet” areas had evolved from a slow-moving cancer to a dangerous high-grade thing. If you can remove an aggressive cancer before it spreads, you have the best chance of neutralizing it. That hard choice is the men’s version of lumpectomy surgery or total mastectomy for women.

In last week’s procedure, Dr. Dahl removed my cancerous prostate, which started out walnut-sized and was now the size of an orange. He also cut out a half-pound beef patty of fatty tissue that the prostate sat on. They call that “trimming the margins.” All of that, plus some lymph nodes, went to the pathology lab.

The pathologist found that the tumor that was inside my prostate in mid-October had just punched through the side of my prostate into the surrounding tissue. Another cancerous area sent tendrils wrapping around a nerve fiber in the prostate. That’s how this cancer spreads, and if it spreads far enough, it kills. The sp*ed with which that happened was, in retrospect, frightening.

Fate was on our side. The growth of the tumor outside my prostate appears to be contained in that hamburger patty of margin that Dr. Dahl cut away. The other growth that was climbing my abdominal nerve fiber had not reached outside the prostate. No cancerous fluids had gotten into my lymph nodes. Had we waited much longer, some of those little monsters would have gotten loose. Am I completely in the clear? We hope so, but only time will tell.

With cancer, you can never be 100% sure, so we will continue watching. With no prostate, my PSA should drop to zero. If it doesn’t, that’s a sign there is cancer growing in me still, and the hunt will resume.

I will return to work for the end of the month, and I look forward to visiting William & Mary later this semester. Worcester State University has invited me to be their commencement speaker in May, and I hope to see my friends in the collector car community at the RROC national meet. I have a new book to finish on community and security, more car stories to write, and a grandson to spoil. With all this, you should not be surprised to read that I won’t be at so many of the usual car shows and speaking engagements this season.

There is nothing certain in this life, especially at this age, but I feel we followed a good path. I’ve seen too many good people die of this damn cancer, yet it is almost always treatable if caught soon enough. Too many people ignore PSA testing, or don’t go to doctors at all. As painful as this was, the alternative is far worse, as I know from watching my friends.

Some people keep things like this quiet, but I’ve found sharing parts of my life has been helpful, both to me and to those who find value in my words. As much as cars and machines matter to me, people mean more. I want to thank all of you who have called or sent messages of support. I am healing, and you’ll see me again quite soon.

Today I am in my 11th day post-surgery, and I am once again able to p*e on my own, without the catheter I wore for the last 10 days. That sounds like kind of a so-what kind of thing, and it is, until the day you can't do it. That day is coming for most all of you (and me). Like a little boy, I have to learn to be housebroken all over again, since the prostate that usually held my p*e inside is gone. Now, I must rely on my bladder muscle, and I've learning to do that. It is humbling to relearn such a basic bodily function at this age, but it's better than the alternatives.

I sat out today's blizzard, but the guys at J E Robison Service Co did a great job managing the snow in our three-acre yard. My neighbors volunteered to do the plowing I could not do, and I thank them for that. The photo shows one of the seven-foot snowbanks at the back end of our complex. Soon enough, I'll be back to work.

Best wishes to you all

John Elder Robison

Here's a nice video on Ace Frehley's KISS smoking guitars. Long ago and far away, but still seems like yesterday.

The Truth Behind Ace Frehley’s Legendary Smoking Guitar 🔥 The Truth Behind Ace Frehley’s Smoking Guitar 🔥From a simple stage effect to one of the most iconic props in rock history, Ace Frehley’s smoking guitar b...

It’s a cold grey dawn here in Western Massachusetts. I’m headed to work with the plow on the front of my truck, wondering what the day will bring. Somewhere between two and eight inches of snow is forecast, and we are ready. In another hour, Joe will be out salting the parking lot. Austin and Jack have the larger plows ready on their trucks, and they’ll start clearing as soon as snow starts to accumulate. Jose will be watching over the parking lot, keeping it clear as best we can for plowing.

The ambulance operations in our complex never close. We never know when they will be called out, and we have to make sure they can get out when calls come, no matter what the conditions.

We’re pretty good at handling storms now. Having our own equipment and a good staff makes all the difference. We have three heavy duty pickups with 8 foot plows ready. Two John Deere tractors have snow blowers mounted for sidewalks and snow piles. A larger John Deere is ready with a loader and a bigger blower, but no one expects us to need that. There are salt spreaders and several pallet loads of snow melt in the shed.

Lots of people with equipment like ours hire their crews out to the City, but I don’t want to beat our stuff up plowing roads. It’s enough to clear our three acres of yard, the street around us, the short street we live on and our driveways.

So often, I read about “our great people,” as if people single-handedly handle snowstorms and whatever else life throws at us. They (we) don’t. We would be nowhere without machines. With workers alone, it would take days to clear a six-inch snowfall, and it would be backbreaking work. With the right machines, it’s a few hours work from the comfort of heated cabs.

If your machines are well-maintained, you can drive into a storm like this and be confident your equipment will do its job. Properly maintained gear does not break down or fall apart when things get tough. Before we owned plows and blowers we were at the mercy of hired contractors who generally arrived late and did a less than stellar job. Now, thanks to our equipment, we decide when to work and how to do it.

Machines make the life we take for granted possible.

So as you watch the plows go by, tip your hat to all the workers out there keeping the roads clear and as safe as they can be. But don’t forget that we’d all be home shoveling without modern equipment.

J E Robison Service Co

Some memories of the late Ace Frehley today from Channel # TV and Western Mass News

Amherst man recalls 50-year friendship with Kiss guitarist Ace Frehley While Ace Frehley's death is impacting people around the world, it also hits close to home for one western Massachusetts resident, who knew the guitarist for half a century.

Bruce Springsteen tribute band EZStreet performing last night at The Big E

A great performance from Al Jardine, family, and supporting cast. Eleven musicians on stage, backed up by four crew, so the place was full. The audience loved the BEach Boys music, as did I. We’ve had Mike Love and today’s Beach Boys at The Big E five times in my memory, but this was the first time for Al, who brought a more laid-back vibe compared to Mike Love’s cooler professionalism. Both great performers, and I’d glad to have seen and heard both.

I love the music, the energy, the action of The Big E Check out some of this weekend's musical entertainment . . .

Elephants on Parade at The Big E yesterday

Independence. Security

Over the last twenty years I’ve written about going out on my own because I did not fit into other people’s workplaces too well. As many of you know, I had trouble fitting in because I am autistic. Yet I have certain advantages at work, also because I am autistic. So far, I have mostly written about life as an autistic person, but I have come to realize there is a bigger story to be told.

There are many reasons people might not feel like they fit into someone else’s workplace. Autism is far from the only cause of what we might call “misfit at work syndrome.”

Maybe you feel you don’t fit because of gender, identity, skin color, temperament, or (like me), your neurotype. Neurotype in this case refers to the kind of mind you have. Maybe you are very introverted or uncomfortable around other people. Maybe ADHD, dyslexia, or some other difference shapes your behavior in ways that make it harder to get along. These are not bad things, and they may not feel like disabilities, yet they can make working for someone a struggle.

Despite that, there are millions of people who don’t fit in at work. Many are working jobs they hate. Others are not working. Only a few go into business for themselves.

Why is that?

There is a widespread belief in this society that we grow up and go to work, and typically that involves working for someone else – often a large corporation. We are told from an early age that working a steady job is the path to success, even as we see that the most successful among us are almost all self-employed.

The reason we are taught that goes back to people like Andrew Carnegie in the Gilded Era, when rich people endowed schools to teach workers to staff their factories, railroads, and other enterprises. We still do that today. 99% of business teaching in our colleges focuses on how to work for someone else and not how to start our own enterprises.

Of course, many people rightly say, “I don’t have any money to start a company,” but any of us could start a business, be it polishing and repairing shows, or taking care of lawns, or fixing small machines. We all have the opportunity to save money and buy things to help us earn a living. You don’t need to be born rich to do this. It’s the teaching that tells us otherwise, not real life.

I think my autism helps me see the world – including work – differently, and logically. I believe my experience making it on my own can provide insight to many others – not just autistic people, but anyone with a dream of independence.

Independence is a great thing. So is security. In the autism community, there is a lot of talk about masking and trying to fit in. At my work, people accommodate me. Others may think about fitting in – I don’t, because this is my place. If you have a job today, you can lose it tomorrow. Then what? I don’t have a job. I have a business that serves thousands of people. Customers come and go, and for every person who leaves us for any reason, another takes their place. That is what security looks like, and insecurity is really the job that may go away.

I’m going to continue writing about that, with a view to helping others find the independence and security I have built for themselves. I hope you will join me on this journey. It’s the same advocacy, but different. Let’s see where it leads.

What do you think?