Sunday, May 14, 2017

Mastering the Obvious in Autism Science



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 too many studies of certain topics.  That is particularly true of well-studied paths that are not direct tests of new therapies.  People sometimes ask how many eye tracking studies we need, or how many baby sibs studies?  In my opinion, those questions relate to a larger question – the balance of research funding.  Should we spend less on basic research (such as the examples I cite) and move some of that money to develop and prove out therapies we could use tomorrow?  If my conversations in the community are a guide many who live with autism would say yes, though most would also want basic scientific research to continue.

Deciding how to spend our limited research dollars is difficult.  But there’s less outright waste than many people imagine.  There is good reason to “master the obvious.”

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 and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

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, May 11, 2017

Getting involved guiding autism research

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 paid a small stipend.



Opportunities may also exist for autistic people to work with private foundations who fund autism research.  Some groups will be open to your thoughts; others will have their own agendas.  The more you can open up funding groups to autistic input, the better.

Those are hands-on actions you can take to ensure autism science is usefully guided by autistic thinking.  Are you ready to tackle them?  In some cases all you need to provide useful input is the live experience of autism.  That is enough to get started.  The deeper you get the more you will find a knowledge of the research landscape useful.  Medical science is complex, and so are all the other disciplines that offer promise for improved quality of life.  No one person can master them all, but if you become expert in a particular area you may wish to focus your guidance and advice there.  Others will prefer to remain generalists and use their lived experience alone.

Many self advocates talk about medical and social models of autism, and some suggest that we need to “switch” from medical to social perspectives.  I believe there is a place for both.  There are social scientists studying that very question, and they may benefit enormously from autistic insight.  More than that, the medical issues that often accompany autism are real, and to turn away from a medical model of autism is to ignore that reality.  You may not see a need for medical science to improve your quality of life, but others who suffer intestinal pain, epilepsy or anxiety may have a very different perspective.

Finally, I encourage you to speak out.  By writing about your experiences you may inspire others.  You will contribute to the building of community which is what gives our advocacy perspective.  With community we become part of a tribe with all that entails.  We have unique strengths and we share certain weaknesses.  The better we join our voices, the louder and more effective we will be.


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 and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

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. 











Wednesday, February 22, 2017

The Role of Autism in Polynesian Navigation

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 have extraordinary sensory and calculating abilities – two areas of common strength in bright autistic people.

We understand that different types of people are best at certain jobs.  Building houses requires manual skills - dexterity, and brawn.  Assembling electronic devices calls for precise coordination. A few jobs – like code breaking or software engineering – require special cognitive skills. Some jobs with unusual cognitive demands may be particularly suited to autistic people. A western example of that might be a computer science or math department at a university, where people joke that “half the faculty are on the autism spectrum,” with more than a grain of truth to the statement. Hans Asperger – one of the doctors who originally characterized autism – noted the connection between autism and certain technical and creative pursuits in the 1930s. 

When thinking of a cognitively demanding job you might imagine engineering or science.  Those are good examples, but they are fairly new to humanity in the form we see today.  Wayfinding is an example of a job that was cognitively demanding in a less technological society, such as existed in the South Pacific.   

The job is not physically strenuous, though it does require stamina, as the navigator must be awake and alert for most of a voyage. He/she must remember a vast body of data about the movements of stars, sun and moon.  The wayfinder must sense direction and currents from the feel of swells acting upon his vessel, and be attuned to clues in the environment, like birds showing the direction to land.  Finally the wayfinder must integrate observations with memory, and extrapolate from what’s known of places previously visited to what is anticipated for the destination. An in-depth description of wayfinding can be found in David Lewis’s 1972 book, We the Navigators. 

The complexity of wayfinding is easily underestimated, particularly compared to western navigation.  Anyone observing the navigator aboard a modern merchant ship sees a person surrounded by high-tech gear – satellite navigation, depth finders, radar and more.  The array of equipment fairly screams out “complex task!”  A Pacific wayfinder, in comparison, has nothing in his/her hands, and no tools or aids in sight. They simply stands on the ship’s deck and observe, occasionally giving directions to the helmsman.  There is no observable evidence of the calculations taking place in the mind.

Until recently, non-sailing anthropologists doubted early wayfinders had the ability to deliberately sail open canoes thousands of miles between islands like Tahiti, New Zealand, and Hawaii.  After all, European navigators didn’t learn to calculate longitude (position on an east-west axis) until the 18th century, and they thought that was essential to precise navigation, especially when it came to finding islands.

Prior to developing the ability to calculate longitude European sailors were left with latitude (north-south orientation) as their only measure of position.  Early navigators had little understanding of ocean currents or other factors that might affect their course.  Luckily when Europeans ventured west they had two huge continents as targets.  No matter what direction he sailed, an early European navigator would fetch up somewhere on the shores of North or South America. 

The Pacific Ocean presented a rather different problem. There, tiny islands were scattered over millions of square miles of deep trackless ocean.  A Pacific navigator needs to hold a course much more precisely to avoid missing his targets.  That was a problem European navigators of the last millennium did not solve until the invention of the chronometer, so anthropologists assumed the Polynesians – who did not have chronometers – must never have solved it for themselves.

In a classic display of ethnocentricity some anthropologists concluded Polynesian sailors must have reached distant destinations only by lucky accident. Their arguments were buttressed with stories of shipwrecked European navigators.  However studies showed winds and currents make it impossible for a boat to drift from Tahiti to Hawaii yet legends describe voyaging between the two islands. Polynesians insisted the settlement of their islands was purposeful, not accidental.

Westerners also doubted the ability of craft described as “canoes” to cross vast distances of open sea.  That notion was largely founded on misunderstanding – a Polynesian voyaging canoe has nothing in common with the car-top craft of the same name that Americans know and love.  In fact, Polynesian voyaging canoes have much more in common with the sophisticated twin-hull sailing yachts that routinely cross the oceans today, and in many ways they are even more rugged and seaworthy. 

A group of Hawaiians set out to prove the hypothesis that their boatbuilding and navigation skills were sufficient to have settled the vast Pacific.  In 1975 they launched the first Hawaiian voyaging canoe to set sail in 600 years – the Hōkūle‘a. Built in the pattern of the voyaging canoes of the last millennium, Hōkūle‘a proved to be a remarkably capable craft.  When navigated by traditional methods of star and current observation, Hōkūle‘a crossed 2,500 miles of open sea between Hawaii and Tahiti to make landfall with as much accuracy as any western craft in the pre-GPS era.  The navigator for that trip was Mau Piailug, a wayfinder from the island of Satawal.  His apprentice was Hawaiian Nainoa Thompson, who continues as a wayfinder today and leads the Polynesian Voyaging Society.  Will Kyselka’s 1987 book An Ocean in Mind describes these voyages and the individuals who made them.

Piailug, Thompson, and the wayfinders they trained show that accurate navigation is possible without the use of any modern instruments.  The mind and hand alone are sufficiently powerful tools, given correct training and suitable cognitive powers.  The culture of Polynesian navigation that has been passed on from master to apprentice is once again enjoying resurgence thanks to groups like the Polynesian Voyaging Society. 

When we consider that traditional navigation is a skill Polynesian cultures have guarded and preserved for over 2,000 years we might ask if there is anything special about the individuals chosen to become navigators.  I began to wonder about that when I learned of the cognitive complexity of Polynesian navigation, particularly the idea it is “all in the mind.”  The difference between that and European-style navigation is striking given that the latter relies on specialized tools and pen and paper calculation, where the Polynesian system uses no tools at all yet it produces an equally functional result. 

The early Polynesian people had more of a seafaring culture than what is retained today.  Young navigators apprenticed themselves to master navigators and learned the stars, swells, and currents through observation on long ocean voyages.  Wayfinder accounts of the last century suggest that apprenticeship started as early as five years of age. Navigators often ran in families, with older men training promising sons or nephews.  That process has been largely lost with the disappearance of traditional long distance Polynesian sailing craft, though there is a recent move to resurrect it. 

Modern-day Polynesian navigators train for voyages by looking at the stars and “learning the sky.” They make mental maps of the sky and gain understanding of the relationship between time, one’s position on earth, and the stars.  This gives them a deeper understanding of the relationship of the sky to one’s position on earth than that held by European sailors of the last 1,000 years and it is key to their success.  In addition to the stars wayfinders learn to read ocean swells and currents and interpret countless other clues that point the way to land over the horizon. 

Man’s ability to acquire and use this knowledge is a remarkable display of human cognition.  When westerners learn navigation, they do so within a complex framework of map reading and advanced mathematics to calculate latitude and longitude.  For westerners, navigation also relies on precise timekeeping – hence the importance of the chronometer in our culture.  Pacific navigators do not use those tools.  Their navigation is more elemental. Pacific islanders find their position accurately (with respect to their home and destination islands) without knowledge of western math or celestial mechanics.  They grasp and manipulate the complex concepts of position fixing instinctively.

A westerner can learn basic instrument navigation in a few weeks.  However most don’t even do that – they rely on navigation devices to show the way with no training at all.  The downside of that is, they are totally lost if the tools fail.  Polynesian wayfinders spend a lifetime training their minds but they are then free of dependence on tools or technology. The more we learn about wayfinding the more respect we can have for the few people who master its challenges.  To put their achievements in western terms, master wayfinders are in many respects Olympians of the mind.

After studying all the requirements, it appears that certain autistic people – including those of the broader autism phenotype – are uniquely suited to the cognitive demands of wayfinding. Very few non-autistic people can gaze at the sky with enough intensity and focus to burn an accurate map into their heads, particularly as the map moves when the navigator changes position, time or season.  Yet anyone who works with autistic people would look at that challenge and see an autistic strength.

That’s not the only hint of autism in wayfinding.  In the accounts of Lewis and others, wayfinders exhibit what may be other traits of autism, such as lack of social awareness. Autistic people tend to have some degree of social disability, either from challenges with language or blindness to other social cues.  Polynesian sailing vessels had small, tightly knit crews, where such disabilities would be minimized by familiarity.  A Polynesian wayfinder would be less disabled by autism in his job than he might be in most traditional western workplaces.

What’s most important to the wayfinding role are some of the gifts certain autistic people have.  These gifts are part and parcel of autism because they have the same neurological roots as the disability aspects; the two go hand in hand.  Autism is not widely recognized among present-day native Hawaiians and Polynesians. Yet studies suggest it should be just as common there as elsewhere in the world.  In reading accounts of present-day Polynesian navigators, I see many signs of the broad autism phenotype. 

Some of the autistic traits that can be seen in descriptions of Polynesian navigators are:
·      Social isolation – wayfinders are often portrayed in text as loners or strongly independent. Being independent is not itself diagnostic of autism, but independence and aloneness are common traits for autistic people.
·      Anecdotes of wayfinders often present them as socially inept or unaware. Gaffes were attributed to culture (i.e.; being “from Satawal” or another distant island) but they may just as well have been due to autistic social disability;
·      Accounts of wayfinders describe multiple generations of navigators, who were trained from early childhood, and who then trained the next generation.  Autism has a strong inherited component, so the cognitive abilities needed for wayfinding would likely be passed on in a family line.
·      In his descriptions of wayfinders, Lewis described men who were very tied to routines.  He described several instances of distress when routines were broken. Restricted interests, love of routine, and distress when routine is broken are diagnostic traits of autism.
·      Most descriptions of wayfinders describe them as very focused on their craft.  Extreme focus and extraordinary powers of concentration are common in autistic people.
·      Video of navigators like Mau Piailug (See maupiailugsociety videos on youtube) shows scenes an autism therapist would describe as “very autistic.”  Behavioral examples include limited facial expressions; animation of the bottom of the face but not the top; gaze at the floor rather than other people; and cadence and pattern of speech.  While no one would propose to render an autism diagnosis from a short series of videos, it is more possible to recognize the broader autism phenotype.
·      Wayfinders need an ability to sense subtle clues in the environment, like the way ocean swells feel under the boat.  Autistic people are prone to extraordinary sensory sensitivities, and they are typically good at recognizing patterns or deviations from them (like the way swells feel.)  In his accounts of voyaging with Piailug, Thompson describes how the older man could sense and feel things invisible to him.  That could well be an example of superior sensitivity that might be disabling in some contexts on shore but was a great gift at sea.
·      Wayfinders rely on knowledge and logic as opposed to emotion. Lewis makes that point when quoting wayfinders, who assure him their craft is based on knowledge and not superstition or belief.  A preference for logic over emotion is suggestive of autism.
·      A strong ability to systematize is essential to wayfinding. Examples are judging position from the star map overhead and the classification and interpretation of ocean swells and other evidence relevant to position and course.  Autistic people tend to be strong systematizers;
·      Given the number of stars one can see in the sky, a person’s ability to memorize the position data that is revealed by patterns of stars aligning or setting must be extraordinary.  Thompson says he uses several hundred stars for navigation. Such exceptionality is extremely rare in the general population but somewhat common among autistics.
·      Exceptional calendar calculating skills are very useful for manipulating and evaluating celestial maps in the head.  Autistics are the only group of people known to commonly possess calendar calculating skills. Psychiatrist Darold Treffert has suggested more than 6% of autistics have extraordinary calendar skills.
·      Exceptional visual memory is necessary to acquire the star maps needed for navigation, and that too is common in autistics but rare in the general population.  
·      Finally, a wayfinder needs the ability to transform complex visual images in the mind (i.e. sophisticated thinking in pictures.)

While none of these skills are individually diagnostic of autism they are – when taken together – strongly suggestive that a person fitting this wayfinder description is part of the broader phenotype, and may be autistic.  Of course, not every autistic person is a potential wayfinder. The required ability set is probably very rare in the population but to the extent it exists at all, it will be found among members of the autism community.

Some researchers refer to autistic people as “nature’s engineers” because they can learn complex computational skills on their own, without the need for schools or modern teaching practices.  Exceptional focus and concentration are autistic traits, and in this case they may have helped Polynesian autistics to acquire the skills to design and then navigate their vessels, thereby facilitating the original settlement of the Pacific islands. 

The question of autism in Polynesian navigators actually raises another question – Does a western diagnostic label that we associate with disability have any relevance when applied to a wayfinder in the South Pacific?  That question struck me as I watched old video of Mau Piailug, who died in 2010.  When I watched him in the videos I saw many signs of the broad autism phenotype in his speech, his expressions, and his behavior.  Yet he was a respected leader in his community; there is no evidence that anyone perceived him as disabled in his lifetime.  To apply a disability diagnosis now from afar would strike many people as disrespectful and wrong.

A significant number of Polynesian wayfinders may have been autistic throughout the years.  We have no way to know. The fact is, autism per se had nothing to do with their finding their profession. They were chosen for their ancestry or their behaviors – both of which might suggest “autistic” to us but suggested “navigator material” to the Polynesians.  It’s worth pondering which worldview is more personally empowering.

On a pacific island world, an autism diagnosis has no meaning.  The place it has meaning is in our hi-tech western world.  It’s here that autistics are disabled, and seeking explanation and insight.  For an autistic teen in a modern-day Hawaiian school, the idea that a great wayfinder like Piailug may be “autistic like me” is very empowering.  What it shows is that a class of people who are mostly disabled and less capable in our society can be exceptional in other circumstances and cultures. 

It’s a fascinating idea.

John Elder Robison
Neurodiversity Scholar,
The College of William & Mary
Williamsburg, VA

Visiting Professor of Practice, Education
Bay Path University
Longmeadow, MA



John Elder Robison is an autistic adult who studies the role of autistic people in society.  He navigates a small boat on inland rivers near his home in Western Massachusetts.  He is the NY Times bestselling author of four books on life with autism:  Look Me in the Eye, Be Different, Raising Cubby, and Switched On.


Does the term autism have meaning in other cultures?

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 he had been navigating the Pacific for 25 years.

He willingly shared his secrets – how he did it. You start by memorizing the sky, he explained. Stars become the points of your compass.  Wayfinders don’t need to memorize the whole sky, he assures his audience, just a few hundred stars.  By memorizing how the stars move through the sky and how high they climb you can determine latitude.  He makes it sound simple, and it is, if you have a photographic memory and the ability to make accurate measurements and comparisons in your mind.  Luckily some of us autistics have that ability.

Then there are the ocean currents, and the winds, and the evidence of fish and birds.  In America autistic people are disabled by our sensory sensitivity.  For navigators like Piailug our exceptional sensitivity isn’t disabling.  It’s life saving.

When listening to him it’s apparent that he accurately senses things many others cannot see at all, based on many accounts.  Where a typical person merely feels a wave rock the boat he senses the angle of the rocking and realizes when it’s different from the angle he felt a moment ago. From that he knows the boat has wandered from its course.  He has similar abilities to sense changes in the patterns in the sky, and in the winds he feels against his face.

American schools are filled with children who have similarly extreme sensory sensitivity.  Almost to a one, their sensitivity is described as highly disabling.  Watching Mau Piailug after seeing those kids reminds us how much of disability is a function of society and context.  If Mau Piailug were told to read a high school math assignment while ignoring the rocking of the boat or the wind across his brow, he might well have been a failure too. 

There is no evidence that anyone perceived Mau Piailug as disabled in his lifetime.  To apply a disability diagnosis now from afar would strike many people as disrespectful and wrong.  In the west we apply diagnostic labels when they serve a purpose.  Most of the time, that purpose helps the person being diagnosed.  When a person learns they are autistic they may understand why they were challenged in school, or making friends.  Knowledge of autism may help them succeed better.  But that’s here, in America.   America is not an atoll in the Southwest Pacific.  What purpose would be served by making a person like Mau Piailug aware of autism?

When I discussed the idea with anthropologists who study Polynesian navigation the idea that some navigators may have been autistic was rejected out of hand, because of their preconceived notions of autism as disability.  In an American or European public school it is a disability, but it’s not so much in these island communities.

Thinking more about autism, one anthropologist suggested that autism may be less disabling in tightly knit Polynesian communities. Community may also have helped turn autism into more of a gift.  In America autistic people are judged to “act strange” by strangers, and that’s said to be a disability.  But on a small atoll like Satawal, there are few strangers, so people are just people.  At the same time, if a person was particularly sensitive to the stars, winds, or waves, he would stand out as a future wayfinder.  In America, all those things would just stand in the way of getting through public school.

It’s worth noting that autistic kids fail in many or most common educational or social situations in the western world.  Do children who are different experience similar beginning-of-childhood failure in Polynesian society?  That would be an interesting question to study, but it could be tough because autism does not appear widely recognized and the kids are therefore “just kids.”  However that observation alone suggest less failure and greater integration.

Based on the evidence of the videos Mau Piailug seems like a great example of a successful respected person of the broad autism phenotype in Polynesian society.  The career path he followed was chosen for him at an early age, and we can speculate that the choosers saw those abilities in him from the beginning, which suggests others of the broad autism phenotype were chosen similarly.  The fit between the cognitive demands of wayfinding and autism seems purpose-made, and perhaps it was.

Given that, we can speculate that a significant number of Polynesian wayfinders may have been autistic throughout the years.  We have no way to know. The fact is, autism per se had nothing to do with their finding their profession. They were chosen for their ancestry or their behaviors – both of which might suggest “autistic” to us but suggested “navigator material” to the Polynesians.  It’s worth pondering which worldview is more personally empowering.

The place autism diagnosis has meaning is in our hi-tech western world.  It’s here that autistics are disabled, and seeking explanation and insight.  For an autistic teen in a modern-day Hawaiian school, the idea that a great wayfinder like Piailug may be “autistic like me” is very empowering.  What it shows is that a class of people who are mostly disabled and less capable in our society can be exceptional in other circumstances and cultures.

Hawaiian culture is enjoying a well-deserved revival.  It’s time for autistic people to find their place in that movement.


What do you think about that?


What about the idea of autism in history?




John Elder Robison
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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 and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

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.