Monday, December 26, 2016

Mexico or Bust - Autistic High Schoolers Build Vintage Bentley Race Car

Here’s how it all began

In the fall of 2013, New York ad executive Tom Webster came to our shop with a dream on four wheels . . . a run-down but running Bentley Continental R.  I just bought it, he told me.  Can we make it run right, and make it special, he asked?

Tom's Bentley as it looked when we started - #MexicoOrBust  (c) John E Robison

Tom found the idea of an autistic Bentley restorer cool for some reason, and when I told him about our new high school program, he thought that was even cooler.  To my surprise, he told me of his own ADHD, and how he dropped out of school, and his own circuitous path to success.  From the moment we met, we became friends and he became one of the strongest supporters of our TCS Auto Program.

As we set about restoring his car Toms got to know more about our school, and he thought more and more about how he could help spread our message.  He told his friends at Bentley USA what we were doing, and they gave him a new car to bring up and show our kids


We talks for hours about our hopes for the school, and where we'd like to go.  Dream bigger, was always his advice.

Meanwhile, here are a few of the things we did to his car . . .







We restored Tom’s Bentley over the next year, and all that time he pondered what he could do to draw attention to our school.  He really liked the idea of teaching young people real life skills in a real workplace, and he particularly liked the idea of autistics making schools for autistics and others who are neurodivergent.

Tom Webster's Bentley when we were done  #MexicoOrBust  (c) John E Robison

Tom came up with a crazy idea – to build a vintage Bentley with our students, and to race it somewhere special.  After a bit of searching we settled on the Carrera Panamericana, a grueling rally that runs 3,000 kilometers along the spine of Mexico.

The idea that a ragtag pack of autistic and otherwise different high school students from Springfield, Massachusetts could pull this off must sound pretty crazy.  But we have help.  I’m a long time repairer and restorer of Bentley motorcars, and the company I founded – J E Robison Service – is sort of known for making these old cars go.  Our school's parent nonprofit - Northeast Center for Youth and Families - has been helping people in Western Massachusetts for 40 years.  Joining us to create the TCS Auto Program is just the latest in a line of innovations for them.

Bentley Motors has come on board as a supporter, and they will help with all manner of things as only a carmaker can.  I'll be telling you more about other sponsors in days to come . . .



And then there’s all of you . . .

We will be hosting our first fundraiser on January 19 in at the Classic Car Club of Manhattan on Pier 76, behind the Javits Center.  We’re also setting up a link for people to donate online.  All the donations go to our school’s parent nonprofit, and are tax deductible contributions to a 501c3 nonprofit.  We’re gonna do stuff you never saw a school do before . . .

New and Vintage Bentley motorcars at our TCS Auto Program   #MexicoOrBust  (c)John E Robison

A new Bentley Flying Spur Speed, courtesy Bentley USA #MexicoOrBust   (c) John E Robison



John Elder Robison

(c) 2016 John Elder Robison
John Elder Robison is the general manager of J E Robison Service Company, celebrating 30 years of independent Bentley restoration and repair in Springfield, Massachusetts.  John is a longtime technical consultant to the car clubs, and he’s owned and restored many fine British and German motorcars.  Find him online at www.robisonservice.com or in the real world at 413-785-1665

Reading this article will make you smarter, especially when it comes to car stuff.  So it's good for you.  But don't take that too far - printing and eating it will probably make you sick.

Deep pressure vests - a soothing idea

Are you comforted by squeeze or steady pressure?

Me, wearing a Snug Vest at home  Photo by Maripat Robison 

Readers of my book Look Me in the Eye will recall my chapter about sleeping in piles, where I talk about how it’s comforting to have the weight of another person or a pile of pillows on me when I rest.  My friend Temple Grandin has her squeeze machine, which accomplishes something similar in perhaps a more deliberate way.  I'm almost 60, and I still feel that way.  So does Temple, as far as I know.

With that in mind, autism therapists sometimes use weighted blankets to soothe children, in yet another version of the same idea.

Lately I’ve seen a few products come on the market that take this idea to the next level, and I thought one was worth mentioning – the SnugVest.  I first made its acquaintance at the 2016 National Pediatric Developmental Differences Forum in Chicago.

The Snug Vest people had one of their vests on display and I tried it on.  What a cool thing!  The vest looks and fits like an inflatable life vest, or water ski jacket.  Anyone who has worn one of those will recognize the Snug Vest feeling.  Putting it on made me realize why I like the feel of the vests in my little boat.

The Snug Vest is sized tighter than, say, a hiking vest, and it has expandable sides.  It’s meant to squeeze you a little bit as soon as you zip it up  It’s got fill valves just like a life vest and it comes with a little pump to blow it up.  When you do, it bulges a little and the pressure increases nicely.  You get use the pump to get whatever level of squeeze you want, and there is another valve to quickly let the air out (or you can just unzip it.)

Even fully inflated, you don't look weird. Or at least no weirder than you looked before putting it on.  The inflated vest just makes you look a little bit more solid, or chunkier.  It's like, autistic style.  One thing I particularly like is that the vest squeezes me around the chest where it feels soothing and not around my stomach, which just feels like someone sat on me.  It’s a simple product idea that is implemented nicely, and works like you would hope for.

It is absolutely soothing.

A few years back I heard about another company that was developing a similar inflatable vest, and they were aiming for FDA approval so its cost could be covered by insurance.  I thought that was a fine idea, but the cost of getting FDA approval was huge – potentially millions of dollars – and that promised to make any approved vest a very expensive items indeed.

The Snug Vest does not carry that burden, and it is reasonably priced - $365 as of this writing, in the USA.  They were offering 20% off when I saw them in Chicago, and I have to expect similar deals can be found in the future.   For less than $300 this is a no brainer.  Just one meltdown averted and it's worth the price.  If it averts two meltdowns remember you heard about it here, and send us $20.

At that price, a Snug Vest is about the same cost as a high performance inflatable life vest and considerably more soothing, if you are an autistic person or just someone who’s comforted by steady pressure.  And its air chambers offer some level of flotation, so if you find yourself unexpectedly deposited in a lake or river, the vest will help keep you afloat.  But it won’t look like you are walking round wearing a life jacket, which many individuals would find dorky.  Plus, the design of the vest is very similar to the design of the under-seat life preservers found on many regional jets.  Snug Vest wearers can be assured of having a leg up over other travelers in the event of a water evacuation from one of those aircraft.  Less fortunate passengers will be struggling to don their aircraft vests while you step out the window and enter the water in style.

Another thing about a Snug Vest is, it makes you conscious of being overweight.  It's the opposite of baggy clothes.  So it’s a good thing to wear, to encourage better eating habits.   When fully inflated you will find it effectively deters gluttony.

I travel to quite a few autism schools, and I’m seeing more and more interest in ideas like this to help soothe kids.  If you run a school or you are a therapist in a school program, I’d encourage you to check these vests out.   Blanket, pillows and weights are nice, but you can’t take them with you to class, or wear them on the bus.  These Snug Vests can go anywhere and no one will have a clue they are really something special.

The company representative assured me their products were made in Canada by real people and not machines.  Like many Canadian-made things, quality is good.  

I don’t really describe or review many products on this blog, but this is one item I can definitely give two thumbs up to.

Here is a link to the Snug Vest website.


Woof.

John Elder Robison

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 & Mary in Williamsburg, Virginia.  

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

Thursday, December 22, 2016

Autistic High School Students Race Vintage Bentley Across Mexico!

How about that for a headline?  With the help of our friends at Bentley Motors, we are about to make those words a reality . . .



Many of you already know about my childhood struggles with school, and autism.  Today autism is one of the things that makes me a gifted expert on Bentley and other fine motorcars, but as a child my differences were quite disabling.  One of the worst things about being an autistic kid was being called retarded, stupid, and defective.  It took many years for me to outgrow that stigma and I have resolved to help young people escape it altogether tomorrow.

One way we can do that is by teaching us in ways that work.  Our public education system totally failed me, just as it failed my son 10 years ago and it will fail more autistic kids tomorrow.  I’ve realized we need more practical focus; more life skills teaching and more hands-on learning.  And I’m not just talking - three years ago I partnered in developing a unique school program for kids with autism and other developmental challenges. 

Our TCS Auto Program is aimed at career or college prep for young people like me.   It’s the only campus I know of that teaches public school students real life skills in an actual work environment, here at JE Robison Service and our Springfield Auto Complex.  Our commercial company has established a reputation as a restorer of Bentley motorcars, and it was only natural that we’d teach our students on the cars we love best.

Today I am proud to announce that we are stepping things up a level.  One of our long time friends and Bentley clients – Tom Webster of New York – took an interest in our school and its mission.  What do you need most, he asked me?  We need awareness and public support, I replied.

Why don’t we do something spectacular, he replied?  Let’s build a vintage Bentley and race it!  And let’s make a movie about what we are doing, and the kids will be the stars!  What a cool idea.

That was the genesis of Mexico or Bust! In which we will build a vintage Bentley Continental to race the Carrera Panamericana up the spine of Mexico.  It’s one of the premier rallies of the world, and to my amazement, Bentley has never competed. 

That’s about to change. Bentley has agreed to support us, and Tom has partnered with FlyHelo to make the movie.  Now comes the challenge.  We need your support to fund this effort.  Many of you have told me how Look Me in the Eye and my other books portray life with autism in a way you never read before.  This movie will portray autism in a way you never saw before. 

It will be the race of a lifetime for us, and it can be the race of a lifetime for you too, if you join us.  Bentley is sponsoring our opening fundraiser at the Classic Car Club of Manhattan on January 19.  Please join us in person, and if you can’t we will soon have a website where you can support us online, or by visiting our school.
Contributions to the school are tax deductible; we are a 501©3 nonprofit.

Here’s the invitation from Tom and Bentley.  I hope to see a few of you in Manhattan on the 19th!


Woof!



Wednesday, November 9, 2016

The Election, and the Morning After. What next?

What now?



In the aftermath of this election there is some celebration but for others there is tremendous angst, fear, and unrest. The election map shows what a bubble those of us in the northeast and west coasts live in relative to the rest of the country. I saw that clearly last week, when I spoke in South Carolina at that state’s annual autism conference.  My travels took me from a land of Bernie and Clinton signs to one dominated by Trump/Pence.

I had been asked to speak about autism and employment. But as I told the audience, we could not really address that issue until we addressed the idea of acceptance within our own population, and we built a community of mutual support. With those things done, we (the autism community) will have come a long way toward solving our problems ourselves. And that is how it should be.

My journey that day carried me from one political extreme to another – liberal democratic Western Massachusetts to conservative republican South Carolina. People in those communities very likely held totally opposite political views, and if our dysfunctional government is any example, they might have said there was little common ground.

Yet I was common ground, if an individual can be said to be such a thing. My words of community building and autism acceptance were welcomed at two Thursday events in Massachusetts. There was strong support for the ideas I offered. Then I flew to South Carolina for Friday’s session, where I got a standing ovation for expressing those same ideas.

In my government service I come into contact with people who hold many views on the subject of autism, some in sharp conflict with my own. Rather than argue and fight nonproductively, I say to those people: Let us find the things we agree upon – like the critical need for supports as autistic teens enter adulthood – and let us fight for those things together, rather than fighting each other about areas where we disagree.

Only by joining together will we find a path forward.

Another point to consider is that we can only be master of our own actions. Our ability to regulate others is always more limited than we think. Anyone who imagines himself King of His Household has experienced that firsthand, as teenagers grow up and develop strange ideas of their own. At the same time, we must recognize that our words have influence, and we should be mindful of what we say, and what we want that influence to be. For myself, I can spread a message of acceptance and community building among autistic people. What others do when they hear that is up to them. Whether they embrace that message in other aspects of their lives, is up to them as well.

The election was the focus of millions last night. Today there is a widespread sense of, what now? Whether you supported Trump, Clinton, or neither, the reality for most of us remains the same. For me, there are still cars to be fixed at Robison Service. There are still kids to be taught at Tri County. There are still ambulance calls throughout our city, and expectant moms are still coming here for our child safety seat program. So I am here at work to ensure those things happen seamlessly.

I’ve written before about how I can’t go to movies because I am overwhelmed by the concentrated and exaggerated emotions. The televised election coverage last night was the same. I could not handle it and read a book. Today I awoke to the news of our new president. And I went to work.


You or I may have ideas about running the country better. Most of us do. But we are not running the country. You do what you do, and I am “running” this little circle of things – my businesses, teaching, our emergency service complex, and my speaking and advocacy. No matter who gets elected I will continue to do the best I can at what I do, and encourage others to join together in shared missions. I hope you can do the same.

John Elder Robison


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 & Mary in Williamsburg, Virginia.  


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

Monday, August 22, 2016

SWITCHED ON and brain stimulation in Australia

Next week I set out for two weeks in Australia, talking about brain stimulation and the SWITCHED ON story.  I hope to see some of you there!



Friday Sept 2 - Sydney
6PM Welcome dinner for the Festival of Dangerous Ideas, Sydney Opera House

Saturday Sept 3 - All over Australia
ABC Radio National - All in the Mind

4PM Festival of Dangerous Ideas opening

Sunday Sept 4 - Sydney
12:00 - My session will be in the Drama Theatre at the Sydney Opera House

Monday Sept 5 - Adelaide
6:30PM Adelaide Writers Week in Conversation with Roy Eccleston
University of Adelaide North Terrace

Tuesday Sept 6 - Melbourne
2:20PM Join me LIVE on Daily Edition television

5PM Autism Awareness workshop at Arena Academy, Docklands, 700 Bourke St

Wednesday Sept 7 Melbourne
8AM ABS News breakfast television with Virginia and Michael

Thursday Sept 8 Melbourne
8:45 Triple R Breakfasters radio - Sarah Smith, Jeff Sparrow, Geraldine Hickey

Saturday Sept 10 Brisbane

11:30 In Conversation - SWITCHED ON Brisbane Book Festival, Aud 1, SLQ

Sunday Sept 11 Brisbane

1PM Building a Better Brain - The Edge SLQ










Sunday, July 17, 2016

Thoughts on the direction of autism research

Thoughts on the role of the Interagency Autism Coordinating Committee, from an autistic person.  Note that the views in this essay are my personal opinions only, and not the views of the committee or any government agency. 



One role of this committee (IACC) should be to serve as a bridge between the autism community and the Federal agencies charged with supporting that autistic people and their families.  We started by identifying questions to be answered and then reporting advances in autism research.

In the past three years a glaring hole has emerged.

From the beginning autism diagnosis and treatment focused on children.  Autistic behavior was first characterized in children in the 1920s and 1930s.  By 1943 clinicians had observed that autistic symptoms were often present from the beginning of life.  At the same time, regression had also been observed in some kids. 

By 1950 Leo Kanner, George Frankl, and others had recognized the neurobiological basis of autism that most scientists accept today.  As such, autism was recognized as a lifelong condition.  Kanner and other pioneers of autism diagnosis would later take pride in following the development of some of “their” autistic children into adulthood.

Sixty-some years have passed since autism was recognized as a neurological difference.  In that time countless child therapies have been developed but virtually nothing has been done for adults.   In the modern era this committee began with a focus on autism in children.  It is just in the past few years that we’ve begun to recognize adult needs.

Autism is unique in medicine, in that the support needs of adults are different from those of children.  When we look at other lifelong medical conditions we see tools and therapies that help across the lifespan.  For example, wheelchairs or artificial limbs are of the same use to adults and children.  In many cases, medicines that help children also help adults.

That is sometimes true for autistic people too.  Therapies that help us calm and self regulate can help children and adults alike.  But adults have unique problems that children don’t share.  Job coaching, for example.  Recent research has shown that autistic adults have many previously unknown health vulnerabilities, and little is known of them.  Finally, autistic children are assumed to live with their parents.  Where are autistic adults supposed to live, when our parents are gone and we are not able to remain self-supporting and independent?

Over the past decade, we have spent over a billion dollars on autism research.  While some of that research will surely benefit families of tomorrow, very little of it will benefit those of us living with autism today. It is my feeling that we should divide our efforts and follow a two-pronged approach when we allocate research funds for tomorrow.

We should continue our efforts to unravel the biological foundations of autism.  We’ve already figured out that there are probably not one “autism” but rather hundreds or thousands of “autisms” . . . different pathways to a similar set of observable symptoms.  That may lead to many different treatments for the most disabling aspects of autism.  I hope we also find ways to relieve the many co-occurring conditions that plague autistic people and cause suffering and early mortality.

At the same time, I believe we should devote a significant portion of our research budget to develop tools that maximize the quality of life for those of us living with autism now.

In other words, I think it’s great that we may find a drug that helps relieve sensory overload for the autistic people of 2031.  There’s still value in developing headphones or quiet spaces to help the autistic people of 2018. We can do both, and we should.  The promise of a drug in 10 years is not what a person who suffers today wants to hear.  It’s within our power to do both, by following parallel paths – one long and the other short.  One path may be medicine based, while the other relies on electrical engineering. 

That’s also an important point – we first saw autism as a medical issue.  Now it’s clear that practical assistance for autistics may come from chemists, electrical engineers, psychologists, computer scientists, and a host of other professions.  We need to bring those people into our community, and into these processes.

We have – in my opinion – lost sight of our duty to the American people.  That duty is to deliver tangible timely benefit to the autism community.  By focusing on the long term, we have effectively ignored the current plight of millions of Americans in the hope that “we will solve this problem for the generation of tomorrow.”  By focusing on medicine we have failed to support technology based aids that could be delivering real value today.

I think this happened with the best of intentions.  We first approached autism like smallpox or polio – as a disease to be vanquished.  Why invest in developing supports for what was effectively a plague?  Better we find a cure, or even better, a vaccine to head it off before it begins.  That is the mindset most medical professionals brought to autism research a decade ago.   Few hold that view today.

Today’s view is more nuanced.  On the one hand, we see that environmental exposures can precipitate maladaptive autistic development, and we seek to identify those causes and head them off.  At the same time, we see others who inherit autistic differences, grow up to be reasonably functional, and pass a form of autism on to their own children.  Then there are the people who develop idiopathic autism – a disability with no known cause. 

With such a heterogeneous population it should be clear that the “disease conquest” model we started out with is not the answer for every autistic.  Yet that mindset continues to guide our research.  The overwhelming majority of funding goes to basic research even as we recognize that there’s a significant portion of the autistic population for which that work is probably irrelevant.  And their needs remain unmet.

The first step is to accept that autism is not what doctors thought it was, ten years ago.  In fact it’s not any one thing.  It’s many things.  For each of those, we must ask – are we seeking a cure, or a remediation of disability or suffering?  And we should also ask, is there a short term support or aid we can deploy while we pursue a greater long term goal?

The next step is to adjust our research goals with that in mind.

We must balance our duty to help the population living with autism today against the possibility of developing greater benefit for a future autistic population.  That means recognizing and supporting autistic adults, throughout the lifespan.  Autism is not a childhood issue that goes away.  It is a lifetime condition.


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 & Mary in Williamsburg, Virginia.  

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