Subscribe: Look Me In The Eye
http://jerobison.blogspot.com/feeds/posts/default
Added By: Feedage Forager Feedage Grade A rated
Language: English
Tags:
autism research  autism  autistic people  autistic  bentley  it’s  new  people  person  public  research  school  time  years   
Rate this Feed
Rate this feedRate this feedRate this feedRate this feedRate this feed
Rate this feed 1 starRate this feed 2 starRate this feed 3 starRate this feed 4 starRate this feed 5 star

Comments (0)

Feed Details and Statistics Feed Statistics
Preview: Look Me In The Eye

Look Me In The Eye



Aspergian author and autism advocate writes about books, Asperger's, autism, and life in general. John Elder Robison is the author of Switched On, Raising Cubby, Look Me in the Eye and Be Different Read more at www.johnrobison.com



Last Build Date: Wed, 31 May 2017 10:51:44 +0000

 



Mastering the Obvious in Autism Science

Sun, 14 May 2017 19:51:00 +0000

At this years IMFAR autism science conference I saw several presentations on seemingly obvious topics.  For example, one study (DaPaz, University of California at San Francisco) assessed the responses of 89 parents to their children’s autism.  The comments were grouped into three categories – despair/hopelessness; self-blame/searching; and acceptance/benefit finding.  The researchers drew conclusions about the relationship between the types of comments and the parent’s states of mind.  Not surprisingly the parents who reported mostly despair had poorer outcomes and acceptance was associated with lower stress.  When I mentioned that study the most common reaction was, “Isn’t that obvious? Why are we spending money on a study like that?”There were plenty of other similarly “obvious” studies.  For example, one showed that parents who are educated about their children’s autism do better. Another found that kids do better when parents are taught basic autism therapy skills.Here’s a really important point to consider when you ask why agencies fund studies like that:  When it comes to arguing what health insurance should cover, decisions are driven by evidence.  You may think a certain thing is obvious, but without clear evidence, you are unlikely to see any insurance company cover it.  Even when we think the evidence is clear, doubt may remain and that can necessitate more studies.  Occasionally, studies of the obvious reveal really surprising things, showing us that the obvious is sometimes badly misunderstood.For example we have all hear that employment statistics for autistic people are dismal.  “90% unemployed,” is a number that’s commonly bandied about.  Personally I always doubted that and in fact an Autistica UK study that I saw on Friday night showed the number was closer to 60%.  In that case far more people seem to be working that previously assumed.There are obvious implications for public health policy in number like that. There’s a third group of “obvious” studies that we need very much.  Those are the studies that further validate initial research results.  It’s great when a lab reports positive outcomes for a new intervention or therapy.  But one great result is not enough to put that new there app on the menu all across the country.  We need a plethora of studies – on disparate populations; done by different groups of researchers – to build a really solid base of evidence that something worked.  That’s what it takes to win insurance approval for anything new, and even then, it takes years.You can certainly decry this system as unfair and exclusionary.  You might feel the insurers are just trying to escape what you see as a moral obligation.  But of course they would answer that they have responsibilities to both their insured population and their share holders.  The fact is, without evidence, we are nowhere with even the best new therapy.Sometimes these “obvious” studies are conducted by young scientists who are just starting out.  I encourage that. Other times they are conducted by better established scientists under the sponsorship of someone with a stake in the therapy under test.  We have to be careful with work like that because conflicts of interest can destroy the credibility of even the best done research.The next time you see a piece of work you think is obvious, rather than criticize it as wasteful, as if this will be enough to expand the coverage of autism services to be closer to what we really need.  In far too much of the country, the only thing insurers cover is ABA.  That is equivalent to saying the only thing we will cover to treat your depression is Trazodone.  All those other depression mess and therapies – not enough evidence for them.  How well do you think that would work?  If you say, not well at all, that is the reality we face in deploying therapies for autism right now.That said, we do sometimes have to[...]



Getting involved guiding autism research

Thu, 11 May 2017 23:39:00 +0000

In the early days of autism research non-autistic doctors and scientists observed autistic people like me, asked questions, and then formulated their best ideas about what our problems were, and what research might be beneficial and interesting.  Autistic people were patients and study subjects, but we had little say in the research designs.Over the past few decades autistic people have come into their own, and an autistic culture has emerged.  Autistic people began to assert themselves in research, taking stances on the ethics of some studies and the basic purpose of other work.  The Internet empowered many people, and some began offering their thoughts on research and autism science. I’ve written about my own autism science journey, and autistic people now ask how they can get involved.  I’d like to offer some suggestions.The first place for most of us is where we live.  Are you part of a local autism support group?  Do you know other autistic people?  If you live in an area where no such groups exist I suggest you get something started.  The first step in powerful advocacy is to have a community, and encourage it to grow.Check with local colleges and universities, and see who’s doing autism research where you may be able to contribute.  Many departments may be involved in research, and you often find the different departments don’t know what the others are doing.  You can find autism researchers in such diverse departments as Communication Science Disorders, Speech Pathology, Occupational Therapy, Psychology, the medical school, Education, Nursing and even the business school.Research in your area may be focused on very low-level biology, or more practical things like workplace safety.  Given the available research – which is dependent on faculty interests, abilities, and funding – where might you make a contribution?  My first suggestion is that you approach autism researchers, explain that you are an autistic person yourself, and ask how you may be of help.  If my experience is a guide most researchers will welcome your help.  In my own advocacy work I encourage our government funders to require autistic involvement in structuring new studies, and I encourage members of INSAR – the professional society for autism science – to do the same.I'd like to be clear about something here . . . Autistic people have been connecting with researchers for years . . . In the context of volunteering to be research subjects.  In the same way, autism parents have connected with researchers for years, to volunteer their children as subjects.   This essay is not about that.  In this essay I recognize that those researchers will benefit from guidance and advice from actual autistic people in structuring the studies they may later ask us to take part in as volunteers.  I'm encouraging you to be one of those guides or advisors, at least at first.  If you want to volunteer, fine, but let's make sure what we volunteer for is shaped to help us best.If you are lucky enough to live in a city where an autism conference is hosted you’ll have a great opportunity to meet researchers from all over.  For example, this years IMFAR conference is in San Francisco and there are a number of autistic people in attendance, making connections with researchers.  This is the world’s largest autism science gathering, and it happens once a year, but there are smaller autism science conferences at universities all over, all the time.Government agencies are also looking for autistic people who can help shape research.  One central point for contact is the Office of Autism Research Coordination in the National Institutes of Health.  Contact them and offer your services as a reviewer of research grant applications, and that could lead to service on any number of other committees within our public health services.  If you are chosen to review proposed research you will be reimbursed for travel and pai[...]



The Role of Autism in Polynesian Navigation

Thu, 23 Feb 2017 04:06:00 +0000

The past 40 years has seen a remarkable renaissance of Polynesian cultural awareness, with rediscovery and celebration of ancient skills and practices. Polynesians are taking pride in their heritage - particularly the seafaring skills that made settlement of the Pacific islands possible.  The navigation techniques developed and practiced by these island people were distinctly different from those developed by Europeans.  They were originally characterized as primitive by western anthropologists, but we now realize they were in many ways more sophisticated than methods developed in the west.  Polynesian navigators are called wayfinders, and their craft is called wayfinding. Western researchers have studied their techniques over the past 50 years. Their efficacy is firmly established; what’s missing is a study of the intellectual requirements of wayfinding.  This is significant because European navigators rely on measurements with instruments and pen and paper calculation.  Thanks to tools and method, most people can learn to do it.  Wayfinding does not use tools or pen and paper; it is all “in the head,” and for that reason it is more challenging.  Wayfinders are consequently much less common.  This essay considers the cognitive issues and explores a possible relationship between those voyagers and autism.Autism is a neurological difference that was first recognized in people who showed profound disability but at the same time, flashes of intellectual exceptionality.  Autism has been recognized since the 1930s but it has undergone a renaissance of its own in terms of understanding in the past 50 years.  At first, autism was only diagnosed in people with very severe disability.  Then in the 1990s the diagnostic criteria were broadened.  The phrase “communication disability” that once meant “nonverbal person” now refers to anything from that to inability to understand facial expressions in an otherwise articulate person.  With that change, far more autistic people were recognized, especially kids.  At the same time, the perception of autism changed. Where it was seen as a crushing disability, autism is now viewed on a continuum.  There are extremely disabled autistic people, but the autism spectrum also encompasses some gifted individuals.  The mental gymnastics performed by wayfinders appear to match capabilities bright autistic people are known for, and excel at.  At the same time, the wayfinding job and its social context seems to be one where autistic disabilities would be minimized.  The closer a knowledgeable (with respect to autism) person looks, the better the fit appears to be.  Anthropologists who are accustomed to seeing autism through the lens of disability might initially doubt the connection because wayfinders have traditionally been important figures in island cultures. They are not socially isolated as the disability model might predict.  Yet that does not rule out their being autistic.  There are many autistic leaders in western society.  Profoundly disabled autistics make less than one-half percent of the human population.  The number of people who have some autistic traits without total disability is much larger.  The autism spectrum – the term for all autistic people – includes 1.5% to 2% of humanity.  Adding in people who have some autistic traits but not enough for formal diagnosis yields what researchers call the “broad autism phenotype,” which may total 5% of the population. This essay explores some of their unique attributes and why autistics might have been drawn to wayfinding.We begin by looking at the wayfinding task, and asking a question: what kind of person sets sail in a vessel, with no navigational instruments, into the vastness of the South Pacific, and travels 2,500 miles on winds and currents to reach a destination island that is just 50 miles wide in an otherwise open sea?  Wayfinders[...]



Does the term autism have meaning in other cultures?

Thu, 23 Feb 2017 03:52:00 +0000

Two years ago I was invited to the island of Hawaii to speak about autism and neurodiversity on behalf of the Department of Education.  Before going there I read what I could find on autism and its culture in Hawaii.  There was not much going on, as far as autism culture.  But there was a great renaissance of native Hawaiian culture.  Autism has been part of humanity for quite a long time, so I realized the two must be intertwined, but how?  One place where I immediately suspected a connection was in the area of navigation.That set me exploring the possibility that some Polynesian navigators may be/have been autistic.  That has been a fascinating thing to study, and it raised another question that I'd like to discuss – does a western diagnostic label that we associate with disability have relevance when applied to a gifted individual performing a specialized task in the South Pacific?  That question struck me as I watched video of Mau Piailug, an indigenous navigator from the island of Satawal who died in 2010. Polynesian navigators were for many years the finest navigators in the world.  Using their eyes and their minds – no tools or maps – they successfully steered vessels over vast distances to every corner of the Pacific.  They did this over thousands of years, during a time that western navigators had absolutely no idea how to find a speck in the ocean like Hawaii or Tahiti.Polynesian navigation is often referred to as wayfinding to distinguish it from the instrument and chart based navigation practiced elsewhere in the world. As soon as I read about the various cognitive requirements of the job I thought it was something autistic people would be ideally suited to.  I wondered if there was any evidence of autism in wayfinders and indeed there were clues in various writings.  The thing that really cinched it for me, though, was watching videos of a master wayfinder from the island of Satawal.  When I watched the videos I saw many signs of the broad autism phenotype in Piailug’s speech, expressions, and behavior.  He did not look at the person he was speaking to, or the camera.  He looked down almost all the time.  He spoke in a near monotone with a pattern of prosody I’ve learned to associate with autism.  When he spoke, his eyes and upper face were generally devoid of animation and he seldom displayed large expressions.  He also had the flat affect that is common to autistic speakers. To a trained eye, those were all signs of autism.  Yet the films did not depict a disabled man.  They showed an exceptional man telling his story for an appreciative listener.   Watching Piailug speak, I thought to myself, what would I say to him, if I were there?  Would I focus on the magnitude of his achievements, safely navigating open boats across thousands of miles of trackless ocean? Or would say the tendency to look at the ground when speaking is common in autistic people, and he does that.  I could go on to enumerate fifty points of diagnosis, but in the end I could not help but think, so what?  It’s not his autistic behaviors that matter, it’s his life work.Mau Piailug was a respected leader in his pacific island community and the west.  He came to the attention of American media when he navigated a Hawaiian voyaging canoe 2,500 miles from Hawaii to Tahiti with nothing more than his eyes and his mind to guide him.  He didn’t use charts or a compass.  In fact, he did not even know how to use them.  He did something we regard as extraordinary, but to him it was ordinary; so much so that according to him the outcome was never in doubt. He simply did what he’d been trained to do from childhood.  His grandfather started his training when he was a toddler, dipping him in tidal pools so he could feel the sea.  By age 18 he could navigate on his own, and by the time of the Tahiti passage h[...]



Photographing the Volcano

Sun, 05 Feb 2017 21:07:00 +0000

Earlier this week the New York Times and other media outlets ran a story about something remarkable happening on the island of Hawaii.  For the past month, lava has been flowing from the volcanic vent at Puʻu ʻŌʻō.  The flow was coming to the surface at the Kamokuna coast where it was building new land as it entered the sea. 61G lava flow entering ocean at Kamokuna (c) John Elder RobisonThat spectacular but ordinary process became extraordinary when a big chunk of newly created cliff face collapsed into the ocean. On New years Eve the cliff fall exposed a lava tube that led seven miles from Puʻu ʻŌʻō, and it began streaming red-hot liquid rock as if from a fire hose.  Video in the Times showed lava arcing downward sixty-some feet into the ocean below, where it exploded in spectacular fashion.The Times story made such an impression on me that I resolved to go there and see it for myself.  I packed a Nikon D5 camera with an 80-400 lens, and set off on the journey.  There are three ways to see Hawaiian lava as it flows into the ocean.  You can take a helicopter, which gives an aerial perspective and allows access to remote sites. You can hike to the lava, but this flow was emerging from a newly formed and unstable cliff, and could not be approached closely on foot.  The final option is to take a boat.There are several groups offering lava boat tours in Hawaii. Vessels range in size from skiffs that carry six passengers to 50-seaters with rows of seating like a tour bus.  If you are a serious photographer the only choice is a small boat for the unrestricted views.  The charter I took was operated by Kalapana Cultural Tours, a group I recommend based on their attitude, knowledge, and seamanship skills.  Tours run from pre-dawn to after dusk, weather permitting.  The launch site is about 14 miles from the lava flow and the trip out and back can be rough.  Luckily this trip wasn’t – it was as smooth as an ocean passage can be.  Our boat had a captain and crewman, and seats for six passengers.  It was 22 feet long and powered by two outboards.  Everyone climbed aboard while the boat was on its trailer and we launched fully loaded as there are no docks to tie up to at Isaac Hale Beach.My own boating experience led me to choose the 5AM departure as the seas are usually smoothest before dawn, and the contrast of the lava and dark would be striking.  After being dropped in the water we headed southwest along the dark coast.  Traveling a few hundred yards offshore the water was already 300-350 feet deep.  Thanks to that the swells were minimal, even as they reared up and broke on the rocks of the shore with considerable ferocity.  The glow and steam plume from the lava entry was visible several miles away, and everyone got ready as we approached.  We arrived in darkness and the view was simply stunning.  Lava streamed from the cliff face just as the news stories had shown.  It was impressive in the news and the actuality of it was even more incredible.The whole scene was lit by the flickering fiery strand of lava.  Sometimes it glowed like the filament of a clear lightbulb. At other moments it was shrouded in a glowing mist of steam.  There was a constant roar punctuated by the pops of steam and lava explosions.  The lava was some 2,000 degrees when it hit the water, which was over 100 feet deep even right next to shore.To the right of the lava flow a huge crack was visible in the cliff face, reaching from the top all the way down to the water.  Being mindful of that our captain kept his engines running and faced the boat out to sea in case we needed to make a quick escape.  This also afforded us a near-perfect viewing platform.  To shoot the pictures below I used manual mode after spot metering for the glowing lava.  Shutter speed was set at 1/500 to give sharp images [...]



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

Tue, 27 Dec 2016 00:47:00 +0000

Here’s how it all beganIn 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 RobisonTom 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 kidsWe 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 RobisonTom 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 RobisonA new Bentley Flying Spur Speed, courtesy Bentley USA #MexicoOrBust   (c) John E Robison John Elder Robison(c) 2016 John Elder RobisonJohn 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 413-785-1665Reading 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[...]



Deep pressure vests - a soothing idea

Mon, 26 Dec 2016 22:10:00 +0000

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 wind[...]



Autistic High School Students Race Vintage Bentley Across Mexico!

Fri, 23 Dec 2016 01:46:00 +0000

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!(c) 2007-2011 John Elder Robison[...]



The Election, and the Morning After. What next?

Wed, 09 Nov 2016 14:34:00 +0000

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[...]



SWITCHED ON and brain stimulation in Australia

Mon, 22 Aug 2016 18:05:00 +0000

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










(image)



Thoughts on the direction of autism research

Mon, 18 Jul 2016 01:39:00 +0000

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 headpho[...]



Non Speaking Autistics and College

Mon, 13 Jun 2016 18:13:00 +0000

Thanks to everyone who joined us for William & Mary’s summer weekend neurodiversity course.  The course was held the same weekend as the Washington DC Pride Parade. There was a lot happening at Dupont Circle! I was thrilled to see a non speaking autistic person among the attendees.  To the best of my knowledge he was the first such person to attend and take part in our neurodiversity programming.  At one point, he asked, “When will colleges be ready for students like me?”  He was accompanied by an aide (she was beside him in high school class too) and he communicated through a letter board where he spelled out his thoughts, and she verbalized them.  That’s a somewhat familiar scenario in high school, but rare in higher education.I wondered how long it would be (if ever) before technology could take the place of the aide.  It seems like a simple process until you watch it happen, and realize the aide does far more than add word spacing and punctuation. She also adds focus, by asking questions and helping clarify thoughts.  I can see a machine solving the punctuation puzzle, but machine intelligence has a ways to evolve for the rest.Replacing that student’s letter board with an ipad would not eliminate his need for assistance in school.  And he was 18 – with college potentially a year or so away.  I told him about specialized autism programs like the one at Landmark College in Vermont, where they have aides like the one he brought to class, and a wide range of intensive support services.  That’s one possibility for college, right now.The other possibility is to obtain funding for an aide through state disability services, and have an aide accompany him to a more traditional (and more affordable) state college.  Unfortunately, the availability of services varies widely across the country.  Digging deeper, I realized the aide is not the only issue.  What about housing, and general living supports?  A non-speaking person with high support needs cannot simply go off to college like a student without disability.  Once again, we have the example of specialized colleges like Landmark who have substantial support abilities, and students can turn to state agencies for help.This adds up to a substantial restriction on the college options for a non-speaking person.  If they are registered with disability services in the state where they live it may be easier to attend school in that state.  But what if they want to attend an out of state school?  That may be a lot more work to set up. And support funding is by no means assured.  Private autism-centered schools like Landmark are an option, but they are few in number and the cost will be prohibitive for many families.William & Mary is committed to making a campus that’s friendly and welcoming to neurodivergent students, but this was a student we could not accommodate with the college’s resources alone.  And I’m sure we are typical of mainstream colleges in this regard.  The truth is, we’ve had very few requests for this kind of accommodation up till now, but I am sure they are coming.How will college admission officers evaluate applications from non-speaking students?  The desire of colleges to use a standardized writing-intensive application runs hard up against the desire for neurodiversity accommodation in students like this, whose disability makes it hard to be expressive in writing.  We owe it to the students of tomorrow to solve this problem.  We talk about community college as a good path for autistic students who want a gentler transition to college.  Most community college students live at home, so that transition is delayed.&nbs[...]



Switched On, and Autistic Feeling

Wed, 23 Mar 2016 03:58:00 +0000

Switched On has gone on sale today, and people are already reading and talking about it. The book tells the story of my participation in experiments where Harvard neuroscientists used high-powered magnetic energy to “switch on” the ability to see emotions in other people. One effect of the experiments was a “stepping up” of emotional response in me.Want to hear me talk about it in my own words? Listen to me describe it on NPR “Here and Now.”  Skip forward to minute 8 if you want to hear my thoughts on this.One of the things that is happening now is that some non-autistic people are commenting on the book in ways that are hurtful to me, and probably other autistics. I don’t think they mean to be hurtful, but they are. If I may, I’d like to illustrate what I mean.One reviewer wrote: “Imagine you are a robot. A smart robot. Now imagine scientists flip a switch, and you suddenly have feelings.” That is the premise of a Star Trek episode, folks, but it’s not the premise of Switched On.In my book I talk about how someone said I looked like a talking robot in a video long ago, and how hurt I was by that comment. Then, after TMS, I felt I could understand why they said that, because my face was very fixed and rigid. But here’s the thing: understanding did not make it any less hurtful to hear. If you were called a freak all through your childhood, how do you think that would feel to hear as an adult?In Switched On, I explain in several different ways that we autistics have deep and strong feelings. What’s different about us is that we may not express them in the expected ways, and we may not have typical responses to things that might trigger an emotional response in you.That is not robot behavior. That is autistic behavior. Read my book for the scientific studies that explored that, why it can be beneficial, and what it means. I’m not going to give away the whole book in one blog post but I would like to say this: Switched On is a story of expanding my ability to engage other people by turning on my ability to read their unspoken social cues. It’s not a story of me going from “having no feelings” to “having feelings.” That was Mister Spock on TV.Make of my book what you will, but keep in mind that I – and every other autistic person you are likely to meet – has the same ability as you to feel things. In fact, as you will read, our emotions often run deeper and longer than those of non autistics. So please be mindful of what you say. Words do hurt.Turning on the ability to read other people is a remarkable achievement that strikes at a central feature of disability for many autistics. For many of us, the most painful thing we live with is social isolation. For too many of us, the pain is overwhelming, and we turn to suicide. Did you know the rate of suicide for bright autistic teens is over nine times that for the general population? So it’s no laughing matter.The autism spectrum is very broad. Some autistics are pretty good readers of other people. Others (like me) are very poor indeed. That was what sparked my interest in the study. I saw a chance to maybe get past something that had caused me lots of pain and loneliness for 50 years. If you’d lived with that ache all your life, and saw a chance to escape it, would you take it?Not every autistic person would want a therapy like this, should it become widely available. Not everyone wants TMS or other depression treatment. That is their right (to choose.) For others, it can be life changing or life saving.Best wishes, and enjoy the story.John Elder Robison(c) 2007-2011 John Elder Robison[...]



Philanthropy in Autism - A New Direction is Needed

Sun, 07 Feb 2016 02:46:00 +0000

One of the things that’s seldom mentioned is the role of philanthropy in autism.  By directing their donations, private philanthropists have significantly shaped the direction of both autism research and the public image of autism.In 1977, Nancy Lurie Marks found nowhere to turn when she looked for help for an autistic family member. She would later write, “Autism was a condition which received little public attention and attracted scant interest or funding in the scientific, medical and educational arenas. [My] vision and hope . . . was to undertake a long-term commitment to gain knowledge about autism; to help individuals and families with autism; to bring autism openly into the public eye; and to encourage the free exchange of information about autism.”Mrs. Marks would go on to donate millions to researchers at Harvard’s teaching hospitals; at Yale, and at other schools.  She would also support residential and educational programs for people with significant autistic challenges. In 1994 Jim and Marilyn Simons established the Simons Foundation to support research into science, health, and education.  In 2007 the foundation announced its autism research initiative.  Today Simons SFARI is the largest private funder of autism research in the world.  Like Mrs. Marks, the Simons family was initially drawn to autism research by experience with autistic family members.   In 2005, Bob and Suzanne Wright founded Autism Speaks to pursue a cure for their autistic grandchild, Christian.  The Marks and Simons Foundations were self-funded, and pursued their mission quietly.  From the beginning, Autism Speaks was different.  They raised money from donors, and they spent a great deal of that money on marketing and publicity, most of which portrayed autism as a scourge and public health crisis. By 2010 it would be fair to say that Autism Speaks dominated the public discussion of autism in America, even as the Simons and Marks foundations quietly directed major research initiatives.  One thing all three of those groups have in common is this:  Their founders saw autism through the lens of family members with significant degrees of disability.  They held differing opinions on why their family members were autistic, but they agreed that autism was a serious disability that had been ignored for too long by the medical community.  All three organizations viewed autism as primarily a medical problem.That viewpoint was consistent with the views of leading psychiatrists and physicians.  At the time autism was said to be crippling, and untreatable.  In their own way, those three families resolved to change that. Their viewpoint had evolved from the writings of Leo Kanner, the Hopkins psychiatrist who described autism to Americans in 1943.  Kanner and the doctors who followed him saw autism as a rare and debilitating condition.Consequently, the research pursued by those three foundations was aimed at finding the causes of autism – be they genetic, biological, or environmental.  The goal was nothing less than total cure.Autism Speaks reinforced the public’s perception of autism as a disease to be cured by their publicity efforts.  Most people were completely unaware of autism before Autism Speaks came on the scene, so their story line quickly became the one the public accepted.  The founders of Autism Speaks chose a divergent path when they seized upon the idea that vaccines were the likely cause of autism.  While Lurie Marks and Simons poured millions into basic understanding, Autism Speaks put similar amounts of money into vaccine studies, which proved nonproductive.Meanwhile [...]



Photographing From a Helicopter - some basic advice

Fri, 05 Feb 2016 02:34:00 +0000

You’ve arrived in some distant land, and you have a few days to come back with an array of publishable images.  It’s easy if you want to photograph people in common tourist locations.  But what if you are out for something different?  If you are like me, you’ll want to shoot nature without the people, which means photographing in isolated spots.You can load your gear in a four wheel drive vehicle and drive to some pretty amazing places, and you can even get back out again undamaged if you take reasonable precautions.  But as versatile as a 4WD is, there are places a motor vehicle won’t take you.  For those, a helicopter may be the answer.   Helicopters can take us to remote locations and save days of trekking in and out.  They can take us where there are no roads, and provide a unique point of view as a flying camera platform.  We can look into areas that are closed to foot travel – like flood zones or active lava fields.  Even at 500 feet you'll feel the heat of a lava field like this.  (c) 2016 John Robison Many resort destinations and most big cities have helicopter services.  They may run multi-passenger sightseeing and photo tours, offer birds for charter, or both.  If you are working for a client with deep pockets, the best results come from making a flight plan and chartering the helicopter.  The only drawback is cost – charters start at $1,000 in most places and can hit five figures pretty quick.  Hughes 500 with doors off - an ideal 4 seat photo platform.  Courtesy Paradise Helicopters, Hilo, HI Image (c)2016 John RobisonMulti-passenger tours are usually a lot less costly; anywhere from $150 to $1,000 depending on length and location.  But there are several issues with tours that a photographer should be aware of.  First is the helicopter itself.  Many tours use larger choppers with three-wide seating in back. That means you could be stuck in the middle.  The next issue is speed – to keep costs down, tours tend to be conducted fast so it will be hard to get good images. Finally, there are the windows – a multi passenger charter will almost always have doors in place (for safety, quiet, and comfort) which means you have to shoot though the windows, complete with reflections, scratches, and limited fields of view.The best option is a flight where the pilot hovers or circles slowly above photo targets, and flies with the doors off.  This will allow a clear field of view, limited only by the photographer’s courage and flexibility.  Not every air service flies doors-off, so you should investigate that options before making a commitment.  You should also make sure you are up for it.Flying in a helicopter without doors is a much more intense experience than conventional touring.  The first thing you notice is the wind, which you will feel as soon as the pilot opens the throttle to take off.  Without doors there is a constant blast of air through the cabin.  Changing lenses, memory cards, or batteries is absolutely out of the question.  You’ll have your hands full just holding onto the camera.The next concern with doors-off flying is that you look straight out of the chopper.  There is nothing between you and the ground but the safety belt.  Be sure it is latched!  When the pilot reaches a photo site, he will likely heel the helicopter onto its side, allowing you to look almost straight down.  Needless to say, some photographers find that quite disconcerting.  Do not drop your camera in alarm.When you are in the air you’ll be in a world of sensory overload.&nbs[...]



Are Geeks Narcissists? A PLOS ONE article asks the question . . .

Tue, 15 Dec 2015 16:42:00 +0000

In a recent PLOS ONE journal article, researchers Jessica McCain, Brittany Gentile, W. Keith Campbell posit that perhaps geek culture is a way of sustaining a narcissistic self-view.Geeks with Swords (c) JE RobisonWhile I agree that it might look that way on the surface, I think their conclusion is wrong; founded upon an incorrect or incomplete understanding of geeks and geek culture. With all due respect, I suggest that perhaps the authors made an all-too-common mistake. They interpreted observations of self-focused behavior as narcissism, when they were actually seeing autistic traits; either autism or the much more common "broader autism phenotype."  As a result, the article as it stands is harmful to autistic culture, and geek culture, because it perpetuates a wrong stereotype.The article focuses on the geek community’s outsized interest in online gaming, massive multiplayer games, role playing games, and science fiction, or comics or fantasy.  Games and conferences have grown so large that they’ve become major cultural events.  And people naturally draw conclusions about those who attend, and how they may be different from others in the community.It’s well known that we geeks get lost in our own worlds, and in fantasy worlds of various sorts. The question here is, why does that happen?  If a person is fully aware of the wider world, but chooses to ignore outside signals and focuses on himself that is narcissistic.  If we do that because we are oblivious to much of what goes on around us, and we are blind to the signals of others, that is an autistic spectrum trait. Most autistic children experience bullying and mistreatment, growing up.  That is an unfortunately consequence of acting differently, and being insensitive to other kids.  As they get older, autistic kids often withdraw from social contact, even as they desire it.  They may gravitate to online communities, where they are less likely to appear different or disabled, and in fact may seem exceptional due to their intense focus.To a large extent, that explains the path autistics follow into gaming and fantasy.  It’s founded on isolation and social disability, and narcissism has no part of that picture.  Yet narcissism is often assumed by observers, incorrectly.   That is a natural reaction for a person who is not autistic. They see various signals from other people, and it never occurs to them that an autistic person next to them might be oblivious to the same signals.  So when the autistic person fails to respond as they do, they assume his lack of response is deliberate and informed, when in fact it’s not.In comparison, narcissism is saying “I see you, but I love myself more than you or anyone else.”  That is seldom the situation for autistic people, who tend to suffer from the opposite – chronic self-loathing and poor self-esteem.  When it comes to self-focus, autistic people do so because they are not fully aware of the people around them, because they have a communication disability.  That is the essence of autism.  After reading this essay in original form, BU Psychology Professor Catherine Caldwell-Harris pointed out that geeks (or nerds as others say) are also drawn into online worlds and gaming in part because they have strong systemizing tendencies, which are traits of the broader autism phenotype. Cambridge researcher Simon Baron Cohen has written a lot about systematizers and that kind of thinking.My experience as an autistic adult informs my interpretation of geek cultural observations.  As an autistic person I know all too well what it’s[...]



Congressionally Mandated Autism Research and the Need for Community Reviewers

Tue, 08 Dec 2015 15:48:00 +0000

Last week I went to Washington to review autism research proposals for the Department of Defense.  Most people have no idea Defense does autism research so I’d like to take a moment to explain . . .A NIH Autism committee in session (DoD is similar)The proposals I reviewed are part of a program called the Congressionally Directed Medical Research Programs. They are part of what’s popularly called the peace dividend.  That is, when we are not spending money to fight wars, some of that money is spent on medical research instead.In FY14 the program invested one billion dollars in 3,500 research projects.  Six million of those dollars went to autism, and the allotment for this year is similar. The CDMRP website has details of where the money goes and I encourage you to check it out.The exact nature of the proposals I looked at is confidential, to protect the intellectual property of the scientists.  But what I can say is this:  All the proposals were for treatment trials, each of which was meant to have a high impact on the target population.  Some were drug trials, some were behavioral therapies, and others were tests of devices or tools to assist us.  The winners of the awards will be announced next year.  You can read about last years winners on the CDMRP website now.There will be another round of research reviews next year.  Proposals are typically evaluated a couple times a year.  And that is where you may come in.  I was the only autistic person reviewing autism grants.  CDMRP has a mandate to get community input into research, but they do not have a reservoir of autistic people to do this. They do have parent reviewers, but non-autistic parents (well meaning as they are) are third person reviewers, not first person reviewers.  Autistic parents (like me) are actual autistic reviewers, which is what they need.This does not mean there is no role for parents.  Quite the contrary.  Parents are the best reviewers to speak for those children who cannot speak for themselves.  But autism is a lifetime condition, and most autistic people can speak for themselves, and in this context they/we should do so.  The ideal reviewer is an autistic parent with an autistic child, because that parent will know both perspectives.  The ideal review committee will have all points on the spectrum represented by a group of community members.As it happened, there was a much larger cancer review program going on when I was there.  EVERY community reviewer for that program – and there were a bunch – was an actual person with cancer.  If you are an autistic person with a desire to help the community I urge you to volunteer to be a reviewer for programs like these.  The science officers NEED input from actual autistic people on what matters to us, what may work, and what won’t.  You don’t need in depth knowledge of the science (though all knowledge helps) but you do need to think about research priorities and ethics. I’ve put a link to the program here. Check it out and let me know what you think.  Can you be a reviewer?You don't need to be a scientist.  A big part of your job will be to tell the group if a particular study will be beneficial to the community, and why (or why not)  Maybe you will see ethical issues - bring them up!  What they need most is the autistic person's point of view.  A good example would be the scientist who says "that's an aberrant behavior) while an autistic adult would say, "No it's not.  Its a c[...]



Is Change Coming at Autism Speaks?

Tue, 08 Dec 2015 03:26:00 +0000

Today’s news that autists Stephen Shore and Valerie Paradiz have joined the Autism Speaks Board of Directors came as a surprise to many.  The announcement follows on the heels of other big news from that organization:Mr. Wright has stepped down as chairman and resigned from the board;Mrs. Wright has stepped back from the organization after a cancer diagnosis;President Liz Feld has announced she will be leaving soon;Chief Science Officer Rob Ring has announced his resignation. It’s possible that a new day is about to dawn for the largest and most controversial autism organization.  For the first time, they have put actual autistic people in positions of power.  They may take more positive steps when the top management is replaced (time will tell.) I certainly hope the organization can change its focus to one that is more constructive, and less demeaning to autistics.  I hope we’ve seen the last of the ugly missives like “I am Autism,” Suzanne Wright’s offensive 2013 editorials, and the suggestion that autistic people are somehow MISSING (we’re not.)  They’ve got a powerful PR machine.  Maybe they can use it to say the right things, for a change.  It’s harder to raise money when there are no villains and demons, but it can be done.  Will they rise to this challenge, or fall back on the old ways?  I’m not an insider, so I have no special knowledge, but I have some concerns about the board and some big donors.  In the past, a significant amount of Autism Speaks funding came from people with anti-vaccine agendas, and followers of fringe or discredited science.  How much influence do those people hold today?  I don’t know, but it worries me in light of their history.It also concerns me that the volunteer base is so heavily dominated by parents. That’s really what the group is: AUTISM PARENTS.  Can they embrace actual autistics to truly begin to speak for the community?  There are a few autistic volunteers there now, and that’s a good sign.After I wrote this, several people wrote me privately to remark on the role of parents.  I've edited my post to add the following, to clarify that my words were not anti parent; simply a recognition that the actual autistics come first in an autism advocacy group.  An autism parent group, on the other hand, is the opposite.Autism Speaks has always portrayed itself as the former while effectively being the latter. With those words, I don't want to make parents out as demons or villains. They have made very real contributions to the autism movement, and in fact we'd be nowhere without them.  But autistic kids grow into autistic adults, and for such a large organization, the percentage representation of actual autistics involved with Autism Speaks is far lower than it should be. My words are in no way an indictment of parents, simply a recognition that Autism advocacy is first and foremost about Autistic people, and secondarily about families.  Both need support, and their wants and needs may sometimes differ and even be at odds.I wish Valerie and Stephen all the success in the world in moving Autism Speaks onto a healthier course. They join Kerry Magro, Amy Gravino, and the other autistic volunteers who have struggled to turn that ship these past few years.  The organization’s fundraising power could do tremendous good, if redirected in a constructive way.  Over the past decade, too much money has been wasted on nonproductive science, and too little spent on real deliverable benefit to th[...]



Thoughts on the Autism Community's needs - Nov 17 IACC presentation

Wed, 18 Nov 2015 03:38:00 +0000

I’d like to take a moment to offer some thoughts on the written public comment submitted to this November 2015 meeting of the Interagency Autism Coordinating Committee.  Prior to this meeting we received 71 comments, which are available online at the IACC site, iacc.hhs.gov. This reflects the long time that has passed since our last meeting.The overriding theme of the comments is dissatisfaction at how little we have accomplished. Every year we publish a summary of advances, but very little of what we describe actually benefits families. Parents have seen children grow to adulthood while we’ve delivered nothing new to help them.  If you take away one thing from the comments it would be this:  We would be very wise to significantly shorten our research-to-consumer translation timelines and focus on therapies and treatments that will be impactful soon, not to the next generation. We’ve spent millions of dollars and years of time look for the foundation causes of profound disability.  We’ve kept that primary course even with the emergence of knowledge that autism is not a progressive disease, and for many of us, the cure model is not applicable. Yet autistic people are stressed and suffering.  What’s wrong with that picture? We need research into benefits we can use now.  Research into relief of suffering from various causes, and research into teaching accommodation skills is often fundamentally different from basic research for a cure.To draw an analogy, in the years after WWII, one group of doctors studied the cause of polio, while another group developed better wheel chairs and braces. Today, we recognize that both groups made great contributions.  Thanks to basic research, polio is no longer an American public health problem, yet the accommodation work the other less well-known doctors did finds even wider use today for other disabilities.  The same is likely true for work to be done in autism accommodation.The next point I’d like to speak to is the large group of commenters who express the view that vaccines cause autism.  In the previous IACC, when I saw the very high percentage of vaccine commenters, I asked the committee if we have research into what the concerns of autistic people and their families are. Indeed we do have such research, and possible vaccine injury does not top the list, even though it tops the list of comments here.  Research shows us the main community concerns are solving the problems autistic people and their families live with today.  Indeed, many commenters who raise the vaccine issue also discuss quality of life concerns. Several commenters describe autism as an emergent epidemic or a fast-growing public health crisis.  This week we have a new National Health Statistics report that puts the prevalence of autism at 2.25%, a striking rise from the 2013 estimate of 1.25%.  But is that evidence of more autism?  The authors of the study point out that the total prevalence of all developmental differences was constant across survey years.  So the increase of autism reports was matched by a decrease in other conditions.  In a similar vein, we have debated for years how much – if any – real increase in autism exists, as compared to increased awareness and expanded scope of definition.  I think this is a area for study but the most recent report is not in my opinion cause for alarm as it probably represents a change in reporting, not a change in underlying autism prevalence.Recent studies like Brugha have shown a fairly[...]



Details for the November 17 2015 IACC autism meeting

Tue, 03 Nov 2015 02:00:00 +0000

This is copied directly from the IACC announcement.  The meeting will be open to any who wish to attend, though registration is required if you want to comment.  You can also mail in comments, and you can watch the proceedings by NIH webcast or listen on conference call:I hope to see some of you in a few weeks.* * *Please join us for an IACC Full Committee meeting that will take place on Tuesday, November 17, 2015 from 9:30 a.m. to 5:00 p.m. ET at Fishers Lane Conference Center5635 Fishers Lane, Room 508/509/510. Registration will begin at 8:30a.m. The meeting will also be available by live videocast for remote viewing.Agenda: Introduction of the members of the new committee and discuss business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.Meeting location:Fishers Lane Conference Center 5635 Fishers Lane, Room 508/509/510Rockville, MD 20852Nearest Metro stop:Twinbrook Metro Station – Red LineIn the interest of security, visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport).Pre-Registration:The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Online registration will be opening shortly. Please check the IACC website for updates.Public Comment – Deadlines:Notification of intent to present oral comments: Monday, November 9th by 5:00p.m. ETSubmission of written/electronic statement for oral comments: Tuesday, November 10th by 5:00p.m. ETSubmission of written comments: Tuesday, November 10th by 5:00p.m. ETRemote Access:The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call.  Members of the public who participate using the conference call phone number will be in listen-only mode. (c) 2007-2011 John Elder Robison[...]



A new IACC Autism Committee is Announced - First Meeting Nov 17 2015

Wed, 28 Oct 2015 22:25:00 +0000

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville, Maryland.In addition to the new public members, the IACC will have a new chair when it reconvenes.  Dr. Thomas Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the committee for more than a decade, announced his planned departure for Google Life Sciences in at the end of October 2015.   Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1, has been appointed to serve as the IACC Chair over the next year.Autism research, services, and advocacy organizations represented by new and returning appointees to the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy Network. Federal departments and agencies represented on the committee include several agencies within HHS: Administration for Children and Families, Administration for Community Living, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and Department of Defense .The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD, preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and providing guidance to the HHS Secretary on matters related to ASD. The public members appointed by the Secretary to serve on the renewed IACC are:David Amaral, Ph.D.Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral Sciences and Neuroscience at the University of California, Davis. He is also Beneto Foundation Chair and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.James Ball, Ed.D., B.C.B.A.-D.Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has work[...]



A Ship in Distress

Tue, 27 Oct 2015 15:23:00 +0000

The ship was the pride of Papua New Guinea’s fishing fleet – 229 feet long and 1,200 gross tons.  Big enough to work the deep water, in all conditions. Spotless, new, and glittering white.  Just one year old, Glory Pacific No. 8 was fresh out of China’s Jinglu Ship Industry yards. She carried a crew of 35 under a Taiwanese master, Capt. Cheng Li Wu, sailing 2,000 miles from her homeport of Port Moresby in pursuit of the great tuna.We Americans tend to take our Star Kist for granted, but before it can be packed and sold in cans, the meat must be extracted from fish, who are caught and pulled from the sea by fishermen like these working boats like Glory Pacific.  As the seas close to shore get fished out, boats sail farther and farther afield in search of tomorrow’s tuna sandwich and next week's cat food.These purse seiners were working the waters northeast of Tokelau, a small island about 200 miles north of American Samoa.  Looking on a globe the area looks like empty deep ocean but it’s actually mile-deep water speckled with reefs and atolls and the occasional lost ship or airplane. Deepwater fishing boats have been working this area for thirty years, with more fisherman on station every season.  But outside of those folks, and the occasional yachtsman, the area remains largely unknown to westerners.  The closest most people ever come is seven miles away – as they pass overhead in a jet to New Zealand or Australia.It’s a remote place to be, when something goes wrong.  Of course, nothing should go wrong in a new ship, but sometimes . . . Late in the day on October 24 the generator stopped.  All the ship’s systems run on electricity, so that was bad news, and it quickly got worse.  The generator had shorted internally, and caught fire.  The fire spread, and soon the whole engine room was burning.  In a matter of minutes that whole part of the ship was in flames and the master was sending out distress calls as the crew prepared to abandon ship.In the beginning distress calls went across the water by morse code, via shortwave radio.  Glory Pacific’s plea for help went straight up on microwaves, to the INMARSAT marine satellite communication network, who bounced their message earthward to the Maritime Rescue Coordination Centre outside of Wellington, New Zealand.The New Zealanders respond to over 1,200 distress calls each year, so they knew what to do.  The Glory Pacific was at the extreme edge of their coverage, in the area where search responsibility is shared with the District 14 of the US Coast Guard, based in Hawaii.  The burning ship was 2,500 miles from Wellington and 2,300 miles from Barbers Point air station in Hawaii.  But the deciding factor for air support was readiness – the American Coasties had a HC130 Hercules ocean search plane ready to go and they sent it south with a crew and supplies within minutes of the call from New Zealand.Meanwhile the ship continued to burn out of control.  In olden days, wood hull ships burned through, filled with water and sank. Today's steel ships are more resistant to sinking but everything inside the hull can still burn to a crisp.  And with the engine room on fire, there's no power to operate firefighting pumps so there is almost nothing the crew can do but flee. Seeing that reality the crew took to rafts, which they tied together in a line.  They stayed close to their ship, but not too close, and[...]



The Challenges of Neurodiversity in Colleges

Tue, 13 Oct 2015 14:15:00 +0000

I’m very proud of William & Mary’s neurodiversity initiative.  I’m even prouder to see other schools following our lead.  Making college campuses more accepting of the neurodiverse is an important step toward making a more ND-friendly world.  It’s time for neurodiverse faculty to come out, and stand as role models for students and staff.  Everyone knows how autism, ADHD, dyslexia and other neurodiverse conditions disable us as children. What we need to balance that are successful adults who attribute their achievements in part to neurodiversity.In doing so, we demonstrate that there is a spectrum for all the neurodiverse conditions.  Some of us are more gifted; others are more disabled. In particular, many of us follow a pattern where we are less disabled the older we get as we learn to adapt to society and use our strengths to offset our weaknesses.  Neurodiverse folks who are enrolled or employed in colleges may be the least disabled of our community, or we may just be the most determined. Or maybe we're just lucky or privileged.  Either way, we should be standing as role models - particularly for younger people and parents - to show what's possible.  That's the best antidote to talk like "He's autistic; he'll never go to college."  While its true that profound disability will leave some of us requiring substantial supports and residential care even as adults, most of us can grow up to live independently and we have great contributions to make.But many societal hurdles stand in our way, and it's up to this generation to knock them down. We also have medical and psychological challenges, and it's up to us to lead the effort to develop the therapies and treatments we need.  Who better than us to articulate our needs and steer the needed research?Unfortunately, it’s not so easy to get college staffers to come out, as this letter demonstrates:Dear Mr. Robison -  As an Adjunct Instructor at the ____________, I've had the unfortunate opportunity to witness instructors & administrators demonstrate bias against autistic students. I need advice. I want to speak with the Dean of Academics about this institutional problem. However, I'm concerned that I may not be invited back to teach.  Do you have any experience with this sort of challenge?  How can we expect faculty to announce their own neurodiversity when they see discrimination against neurodiverse people?  I would not have fear about speaking out at William & Mary, because neurodiversity advocacy is my role. But even here at this college, with a provost who's a vocal advocate of our mission, faculty tell me they are afraid to come out, as in this exchange:“Even with the neurodiversity initiative, and the talk about neurodiversity being good, I’m still afraid coming out could jeopardize my promotion from assistant professor.  I want to help you but I have to look out for my career and family.”What’s the answer to this dilemma?  I believe it comes down to courage and passion.  We must be brave enough to announce our neurodiversity to the world, knowing some will embrace us but others will discriminate against us.  We must speak up even knowing there may be a personal cost before there is a collective gain.  And that’s where passion comes in – we must believe in our cause so much that we push through the negative personal consequences in pursuit of a greater go[...]



A chance to work in our automotive program

Fri, 02 Oct 2015 14:41:00 +0000

You’ve read about the high school program we have in the Robison Service car complex in Springfield.  Our unique school has been profiled in news stories and on New England Public Radio. If you are a certified Massachusetts vocational teacher, or prepared to get certified, this is your chance to come work here!Northeast Center for Youth and Families – the nonprofit who runs the school – is looking for an automotive teacher to teach, supervise, and instruct students in accordance with their individual education plans.  The automotive teacher will be directly responsible for assigned students and will assist and participate as requested in the development of student IEPs and ITPs . Must be able to provide appropriate individuals with data and documentation such as progress notes and other reports.Requirements include possession of an appropriate Massachusetts Vocational Teacher Certificate or that you be working toward certification, experience in automotive repair, and a valid 7D license to drive students in a school van. You must also be willing and able to become CPI crisis de-escalation certified. Clean CORI and driving checks are also required.  Please send your cover letter and resume to:Northeast Center for Youth and FamiliesAuto Teacher Search203 East StreetEasthampton MA 01027HR09@ncyf.orgYou can also contact:John Elder Robison Auto Teacher Searchrobison@robisonservice.comThe successful applicant will divide their time between the automotive program located in the Robison Service Auto Complex at 347 Page Boulevard in Springfield and the Tri County high school campus at 203 East Street in Easthampton. This school-industry collaboration represents a unique teaching opportunity.  It is not a traditional vocation program.  Rather, we’re teaching life skills in the context of this automotive business, and we believe this will help any high school student who is wrestling with the challenges of career/college transition.  The successful applicant may also have the opportunity to teach automotive technology and life skills to area high school students who participate in work study programs in our complex, and you may be able to teach adults in after-hours programs.As an autistic adult who was unable to finish high school this program is particularly important to me. Lots of people talk about equal opportunity and affirmative action, but we need to do more than talk – we need to live it. We have a societal duty to help those of us who are different succeed and thrive, and this program is one small step toward that goal. John Elder Robison(c) 2007-2011 John Elder Robison[...]



Gladiator Combat at the Three County Fair

Mon, 07 Sep 2015 21:37:00 +0000

Demolition Derby.  It’s the closest you can get to blood sport in the politically correct northeast, and it’s it right here at home.  Kill-crazed drivers swarm the field in battered wrecks, bent on annihilation of their fellows. The last car rolling wins.  Local farmers and merchants encourage their sons and daughters to compete, for family honor.  They find themselves up against the spawn of criminals and outlaws, and the nature of the victor is always in doubt.Finally the day comes for the Derby - the affair that will settle everything.  Trucks converge on the fairgrounds with a fleet of cars, and the drivers and their supporters trickle in through the afternoon.  The get read backstage as the field is readied by dragster tractor pulls and clowns.Everyone knows what's coming next.  Meanwhile, the sun beats down and the teams other among their cars.  Some hope, others wish, and a few prepare . . .There was a time when drivers fortified themselves for the combat with whisky.  Those that do so today, do it in secret.  The only consumable liquids you'll see backfield are water and sweet drinks.  The situation is somewhat different for the fans, who have a beer emporium right across from the entrance to the grandstands.  And there's food and drink for the kids everywhere you look.  This is, after all, a country fair.The grandstand seating sold out, with thousands of fans filling the stands, roaring louder with every new crash.  Fun as that sounds, the best place to be is the box seats. There you are up close and personal, like the ringside seats in a boxing match.  Families put their kids out front, like bait for the drivers, where they shake their little arms and yell.  By the end of the night the lucky ones are spattered with dirt from the field mixed with antifreeze and transmission fluid – the blood of beasts sacrificed on the field.  All of them have a story to tell, and a few have souvenirs – pieces of car that fly into the seats when car hits the concrete barriers with particular emphasis.Nothing stands between the fans and carnage but a few referees and some cabled concrete barriers.At Northampton they race on the old horse track, where the grandstands saw countless fillies running under the Labor Day Weekend sun, and the betting windows did a brisk business below.  The betting is closed now, but when the beer if flowing and the cars are out there butting heads hard, you want to a pick favorite, and anything can happen . . .As day turns to dusk the carnage intensifies.  Drivers are shrouded in smoke and fog of their own making and the track is marked with the blood of the four-wheeled beasts.  Firemen stand ready, but mostly the competitors work things out among themselves.The spectacle starts with little cars and ends with the big bruiser V8s - Deathmobiles like the one made famous in the movie Animal House.  When it's all over the survivors stand atop their cars as trucks haul away the bits of wreckage.It’s an American tradition for sure, like deep fried Twinkies and sweet sausage grinders.Words and pictures (c) 2015 John Elder Robison(c) 2007-2011 John Elder Robison[...]