John Elder Robison's Blog, page 7

Steve Silberman’s book Neurotribes is a must-read that raises some interesting questions about the history of the autism diagnosis.  Part of what he writes will be familiar if you’ve read the original Asperger and Kanner papers, but even then he’s found some striking new twists that were buried in the archives, and they are sure to stimulate good discussion.


Last month I had the opportunity to read an advance copy, and this week reviews of his book appeared in the NY Times and Atlantic.  The Atlantic article in particular touched on what I felt was a key part of the story Steve uncovered and I’d like to expand a bit on it here . . .
I’ve always been curious about the striking coincidence in how autism made its debut in the medical literature.  In 1943, Dr. Leo Kanner published a paper in America in that described a previously-unrecognized condition he called “autistic disturbances.”  A year later, in 1944, Dr. Hans Asperger published a paper in German that described the same thing – autistic behavior.  How did two clinicians an ocean apart come to recognize the same previously-unseen condition, and quantify it using many of the same terms?
This mystery was deepened by the fact that Kanner seldom made any reference to Asperger or his work, and there was no known collaboration between the two men.  Or so it appeared.
In the recent Atlantic article, Silberman describes finding the hidden connection between Asperger and Kanner. It turns out to be a third man, Dr. George Frankl.  In the 1930s Frankl was Asperger’s diagnostician at his clinic in Vienna.  Frankl was there for all the diagnoses described in Asperger’s later paper, but he left Austria when the persecution of Jews began.
By 1938, thanks to Kanner’s sponsorship, Frankl had found a new home at Kanner’s clinic at Hopkins, where he examined Donald Triplett – now celebrated as “autism case #1.”  Interestingly, when you read the accounts Kanner published about Triplett there is very little first-person language.  As far as I know, no one has considered the reasons for that until now.  What if Kanner wrote in the third person because Frankl did the actual evaluation?
Maybe we’ve been barking up the wrong tree all these years, debating whether Kanner or Asperger should rightly be the “father of autism.”  Maybe the real father – if there is such a thing – is Dr. George Frankl and Kanner and Asperger were both bosses who facilitated things and took the credit for their subordinate’s work.
Silberman does not suggest that, and I concede it’s just a guess.  But the scenario is all too familiar to postdocs and grad students of today!
To quote the Atlantic article: It is clear now that Kanner and Asperger’s discoveries were neither independent nor simultaneous.
That’s not all . . . One tragedy that Silberman describes at length is how Asperger – in his original writings – described family clusters, regression, and the full breadth of exceptionality and disability that makes up the autism spectrum as we know it today.  Yet the descriptions were not translated from the German for 40 years, and even then they were not widely circulated, so the true breadth of autism remained unrecognized until its rediscovery in the past decade.
The result – countless people at the more verbal end of the spectrum – like me, my son, and his mother – were overlooked and written off as lazy or stupid, when in fact we could have received life-changing interventions and understanding if Dr. Asperger’s insights had been widely known.
In another review of Silberman’s book a writer asked where the 50 and 60 year old autistic adults are.  Putting aside the fact that I am one, and I am highly visible, Silberman talks about that question in his narrative. Dr. Asperger seemed to believe his charges belonged in the community, while Dr. Kanner seemed to believe they belonged away from the parents in institutions.
I say “seemed to” because that is the impression I formed from reading the original words of both men, and it seems like Steve Silberman drew a similar conclusion.
That said, I did not need a book to find older adults with more severe autistic disability.  Dr. Kanner referred many patients to the Deveraux group homes, and I have had the privilege of meeting some of them in modern times as I’ve spoken at Devereaux events and facilities. 
I’ve written before about the sensitivity and compassion I saw extended toward older Jewish adults with major cognitive challenges at the Brooklyn Women’s League homes.   I was very moved by the environment I saw there.  If you are looking for a model for compassionate care and inclusion for people with cognitive challenges (autism and more) look no further than Brooklyn.  And know there are other places like that around the USA.
I can’t imagine anyone could visit facilities like those and wonder where the more challenged adults reside.  They are everywhere, if you know where to look.  And people at my end of the spectrum are everywhere too.  We're every bit as common as Dr. Asperger suspected, and every bit as diverse.    

Later in the book, Steve writes about the emergence of the neurodiversity concept, and the reality that the autistic children of the past have grown up and begin asserting their (our) rights. Autism advocacy started as a parent's crusade on behalf of disabled children, but it's morphing to a movement where autistic adults push for acceptance and accommodation in addition to assistance and services.  We are finally recognizing that the autism spectrum encompasses more than the most severely impacted people that were diagnosed in the 1980s.  

You'd think the puzzle would look simpler but these insights make it even more complex, from my perspective.  

Neurotribes is a book that will make you rethink your views of this autism spectrum and how it all came to be.  Give it a read.

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 the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the US Dept of  Health  and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.(c) 2007-2011 John Elder Robison

This later Jamestown church sits about 100 feet from the original wood pole structure
Was one of the founders of the Church of England’s first permanent settlement in Virginia a secret Catholic? 
Earlier today archaeologists from Jamestown and the Smithsonian announced the discovery of four graves in what was the chancel of the original 1608 church at Jamestown.  In modern terms, the chancel is the area behind the altar in a church, so it's a pretty significant thing to be buried there.  As a rule, chancel burials are clergy and leadership.
There are a number of excellent write-ups on the discovery and the identification of the remains on the Jamestowne and Smithsonian websites.  I won't repeat the story here; the links below tell it better than me . . .
The Atlantic has an interesting interpretation of the findings
Smithsonian has a detailed explanation
Jamestown Rediscovery is the original source
Two of the burials are facing east, the direction clergy were traditionally buried. The other two burials face west.  One of the east-facing graves contains the remains of Robert Hunt, the first Anglican clergyman to land at Jamestown.   The second contains the remains of Gabriel Archer, one of the founders of the colony.  He was said to be Bartholomew Gosnold’s second-in-command.
Both men were buried between 1608 and 1610, just as the colony was getting established.  They are among the earliest English burials in America. At a time when most people were simply buried in the dirt, these men had elaborate caskets.  That, their burial dress, the objects they were interned with and their placement in the chancel tell us they were all men of great status in the colony.

I say "men" rather than "people" because in 1609 Jamestown was essentially a military outpost.  Women and children did not appear in significant numbers until later.  Archer wasn't married and had no children that we know of.

When Archer’s grave was uncovered, the archaeologists discovered what they believe to be a Catholic reliquary that once sat atop his casket.  The reliquary contains bone fragments and the remains of a small lead vessel.   It’s engraved with a letter M, and an arrow. 
Why was he buried in an Anglican church with a Catholic reliquary?  Was the person who put it atop his casket another Catholic? Or is there another explanation?  At this point, no one knows.  
All we can say for sure is that obedience to the Protestant Church of England was the law of the land in 1607, and Catholicism was underground throughout England during Archer's lifetime. 
Prior to this discovery historians knew Archer’s family in Essex, England was Catholic.  His parents were cited in 1583 for being Catholic recusants; failing to attend the now-mandatory Anglican services.  Until now, there was no definitiive evidence about whether Gabriel was Catholic or Anglican, though there were suggestions that he was at least a Catholic sympathizer which was fairly common in England in those days.  I'm sure this finding will lead to a re-examination of the written Archer records in England and perhaps new insights.
Archer studied the law in England and became the colony’s first Recorder.  He was wounded by natives during the original landing. Prior to his arrival at Jamestown, Gosnold and Archer sailed round and described the land we now know as Cape Cod, and they named Martha’s Vineyard for one of Gosnold’s daughters.
The Jamestown settlement was to a significant degree a business venture, but it was supported by the King in part as a way to keep the Catholic Spanish from moving north from their settlements in Florida.  There is little doubt that Robert Hunt – the Anglican clergyman who arrived with the first settlers – was charged with maintaining the Protestant purity of the colony.  How seriously he took that duty is lost to time.  Little is known of the relationship between Hunt and Archer.

Even though the Church of England was the faith of the land, a significant number of people still felt allegiance to the Catholic pope.  So it makes sense that some of the Jamestown settlers may have held such views. Over the past 20 years quite a few Catholic religious objects have been unearthed in and around Jamestown.  Until now they were mostly dismissed as trade objects, or objects without much significance. This most recent discovery casts them all in a new light.  Perhaps religious diversity came to Virginia earlier than we realized.
Maryland was settled a few decades later as a Catholic colony, but Catholicism is not really a part of the early Jamestown record.  This finding may well change that - it will be interesting to see what Catholic historians have to say.  Archer may become the earliest known Catholic burial in British America.
It’s interesting to ponder how that reliquary came to be atop the casket.  If it was placed there during the internment, was his Catholicism acknowledged?   Or was there a Protestant purpose ascribed to the object?  Some suggest that it was buried with him later, but the settlement was very small and rather densely populated. The idea that someone could secretly excavate a grave in the chancel of the church to place the reliquary later strikes me as unlikely.
My interest in this topic stems from family history.  One of my ancestors – Rowland Jones – was an Anglican priest who came to Virginia 60-some years after these men to serve in Bruton Parish, in what is now Williamsburg.  He's actually buried in the chancel of the original church there. For some time I have questioned the strictness of his Anglican views. His uncle and sister preceded him to Virginia, and they both died Quaker.  Did some of that thinking rub off on him? There are quite a few clergymen in my family tree.  While I don’t doubt their adherence to finding a good path, I do question their adherence to established religions.  In my experience, we’re a bunch of nonconformists and free thinkers.

In the records I have seen, religious dissidents like my ancestors came to America to escape persecution in England, and they promptly vanished into the interior of the new land.  The Quaker settlements, for example, were some distance from the "official colony."  Or at least that's how I've interpreted the old writings.  Maybe there was much more mixing, and Catholics, Quakers, and Anglicans lived together much as they do is present-day Virginia.

I've seen evidence of that in the historical records of Williamsburg in studying my own ancestors, but I did not know what to make of it. Today we'd say "Who cares what faith the guy who pumps my gas follows?"  Scholars say religion was a much bigger deal back then, but perhaps its importance was overstated, at least for the common person, or among people who were struggling mightily just to survive.

There is very little written about Catholics or Quakers in the history of Jamestown, but these new discoveries certain give pause for thought. 

John Elder Robison is the neurodiversity scholar in residence at the College of William & Mary in Williamsburg, VA.  The opinions expressed here are his own. 
(c) 2007-2011 John Elder Robison

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 an appropriate Massachusetts Vocational Teacher Certificate, experience in automotive repair, and a valid 7D license to drive students in a school van. 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 01027[email protected]
The 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. 
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

While a fireplace or woodstove can be peaceful, an out of control fire in the home is one of the most frightening things anyone can imagine.  I had a candle set the wall screen on fire in my bedroom 35 years ago, and almost got burnt up. That left me with a lifelong concern and vigilance about the risk of fire.  With the arrival of spring, I thought I’d you some constructive advice on how to protect yourself and your home from fire.
You do not want this to be youMost articles about fire protection focus on keeping hazards out of the home – don’t smoke in bed, don’t smoke when you are drunk, make sure candles are in safe enclosures, etc.  That’s all good advice and I won’t repeat it further here.  Instead I’m going to focus on what happens when a fire has started, for whatever the reason.
Your first concern is obviously getting your family and pets to a safe location. Your next concern is protecting your property, while also staying safe yourself.  That presents a catch-22.  For you to be completely safe you need to be 100 feet back from the house, from which remove all you can do is watch your home burn as you wait for the fire trucks.
If you go in and fight the fire, you place yourself at risk, but if you do it quickly, and do it smartly, your risk is minimized and your chances of extinguishing the fire are actually far greater than the odds of the fire department doing it for you.  When I say that I’m not disrespecting the fire department, I am just pointing out that fires grow exponentially in their first minutes and a kitchen fire may 100 times more difficult to put out five minutes after it started.  After 15 minutes it probably will not be extinguishable without the total loss of the home. 
Yet that is the best response time we can home for from our public servants.  They have to answer the call, load and start the truck, and then drive several miles to reach you.  Once there, the hoses have to be unloaded and deployed, and hydrant hookups made.  Even the fastest firemen need time to do those things.  In most cities the fire department will not be spraying water on your house for at least 10 minutes after your phone call.  In the country, that number may triple.  If you care about protecting your property, even five minutes is probably too long.  You need to act seconds after discovery, and act decisively.

ou must also act fast because a fire in the house will fill it with smoke, and you can become incapacitated or disoriented.  If the house is already full of smoke, all you can do is get out.
How do you do it?  You use a combination of early detection then tools, extinguishers, and water.  Sounds simple, but the sad truth is that most home owners have near-zero ability to suppress a fire in the home, and many can’t even detect fire until far too late. You must also act fast because a fire in the house will fill it with smoke, and you can become incapacitated or disoriented.  If the house is already full of smoke, all you can do is get out.
Small extinguishers like this can be kept in key spots round the house.  The biggest risk in most homes is kitchen fires.  In our house, we keep small kitchen extinguishers (see photo) on both sides of the stove.  If you get a flash fire, those extinguishers and a lid for the burning pot will bring most fires under control very fast.  If that does not appear to be enough – for example, if burning oil were to spread onto the floor – I keep a 6 liter 20pound liquid filled restaurant extinguisher hanging 5 steps away in the garage entry.  An extinguisher of that size – meant for use in commercial kitchens with 80-200lb deep fat fryers - should suppress any normal residential kitchen fire if caught before the structure starts to burn.
A 6 liter liquid filled kitchen fire extinguisher
The key – and I cannot stress this enough – is acting fast.  If you are in the kitchen, and a fire starts, yell out the alarm and grab the extinguishers, aim and fire.  Do not hesitate, because once flames reach up into the ceiling or back into the walls your house may be doomed.


A wise person will have extinguishers close at hand in all places where they may be in time of need.  In our house that means we have them in the kitchen, the bedrooms, and the garage entryways.  We have flashlights in all those places too, in case we have to fight a fire when the power is out.
Headlamp, flashlight, work light.  Keep them close at hand, in bedroom, kitchen, garageWe keep small extinguishers in the house, and bigger units in the garage.  The logic is simple – the little units are inoffensive and easy to handle.    And you don’t need much in the fire’s first seconds.  If they are not enough, the big boys are just inside the garage.  Out there I keep several 20lb units with the knowledge that one may not be enough, and there will be no second chances if they are needed.
Which would you rather risk – $150 for extinguishers or $300,000 for a new home?
Extinguishers are rated by capacity and types of fires.  Kitchen units are Type K, and they are meant to suppress grease fires on hot commercial kitchen appliances.  Some would say that’s overkill in the home but in my opinion, when putting out fires, there is no such thing. 
General purpose extinguishers are usually filled with dry chemical, and rated for A, B, and C fire.  A type A fire is wood, paper, or trash.  Or the house itself.   Type A is best suppressed with water once it gets going.
Type B and C are flammable liquid fires and electrical fires, respectively.  A gasoline or grease fire is a type B fire.  A good 10lb dry chemical extinguisher is rated 4A, 60BC.  That means is can put out a trash fire of 4 square feet, or a 60 square foot pool of burning gasoline.  Most people are surprised to read that it’s harder to put out a trash fire than a gas fire, but it’s often true.
If you have a risk of liquid fires and high value property – like burning gasoline in a collector car – consider keeping a 20lb CO2extinguisher on hand.  Those units are effective against gas fires and they cool the surfaces to prevent re-flash.  Best of all, they leave no residue.  Every collector car garage should have at least one such unit.

If you are really serious about this, and you live in the country, you may also want to look at fire suppression grenades. These devices are thrown into a burning room, where they discharge a mist that cools the room and interrupts the chemical reactions necessary to sustain fire.  They can be astonishingly effective, as this video shows.  One big benefit of the grenade is that you can safely throw it into a smoke filled room that you could not otherwise enter, and there's good chance it will knock down or put out the fire all by itself. 
Do not look for extinguishers like these at chain stores or the mall.  Look at industrial supplies places like Grainger, or local fire equipment suppliers - businesses that serve gas stations and restaurants.  Get the real stuff because your life will depend on it, if it’s ever needed.  If there is doubt about size get the biggest thing you can easily maneuver. There is no such thing as a fire extinguisher that was too big, unless it’s so big you can’t get it where you need it.
The extinguishers I’ve described will suppress most fires in a house, until the structure starts burning.  An example would be if a candle tips over on a sofa, and you do not notice till the sofa is engulfed in flame.  At that point you have one chance – suppress with water spray, fast.  You can knock down a pretty big furniture fire fast hitting it with heavy water mist at the base.
With that in mind, I keep 200 feet of hose coiled on a big hook under the deck, connected and ready to turn on.  That is enough hose to reach our backyard fireplace (150 feet across the yard) and also to reach most anywhere within the house.   There is a backup hose with another 200 feet of hose on the side of the house.  Either one should be sufficient to put out a burning sofa and many other interior fires that have not yet grown out of control.


If you are building a home you can take other steps like raising the ceilings (ours are all 10-15 feet) and using fire resistant sheetrock.  You can also install sprinkler fire suppression.  None of those things are available at reasonable cost to people with existing homes.
What about the roof catching fire, as with lightning or a chimney fire?  I keep ladders under the deck, and they would be the only way to suppress a fire from a lightning strike at the outset.  Waiting 10 minutes for a fire truck in that circumstance generally means the loss of the house.
The next issue is detection.  We have a fairly large house, and I had all rooms and halls wired with central station smoke detectors.  Central station means the system calls a dispatch center as well as ringing a bell in the house.  I have monitors in the bedroom and at the entrances that will announce which zone is in alarm.  If you don’t have a system like this the next best thing is standalone smoke detectors, which need to be in all rooms to be useful.
The fire code does not call for detectors in every space, but that is obviously the one and only way to get fast warning.  Remember to put detectors around the furnace and in the attic.
The tips described above should be “good enough” to protect you if you are home and awake.  What if you are asleep?  First of all, sleep with the bedroom doors closed and be sure there are smoke detectors that work in the hall.  That way, you get an alarm while your bedroom is still full of clear air (unless the fire starts in your bedroom.)  Make sure there is a means of getting out of the house from each bedroom.  In our house we have large windows in 4 of the bedrooms and a door to the deck in the master.  So exit is easy and safe.  If your bedrooms are on an upper floor you should have some means of exiting that will really work. The fire safety ladders that many people buy don’t generally work.  Try climbing one some time and you will see why – unless the ladder had standoffs and weight at the bottom, you won’t be able to put your feet in.  In a panic, you will likely fall.  The solution is to get a high grade rope ladder, or a quickly deployable aluminum unit. You also need to be sure you can actually exit via the windows.
The next thing to consider is night, which is when many fires happen.  With that in mind, I strongly suggest you have portable lights in every bedroom.  I recommend Streamlight Stinger C4rechargeable.  Many police departments use these.  They are very bright, water and shock proof, and when charged they will run for hours.   For most homeowners a good flashlight is a far smarter investment that a gun, and one that is sure to be useful.  I also have larger battery lights that I can use if the power fails (a time of heightened risk)
If you are going in to fight a fire a headlamp is a great thing to have too.  Petzl is a good brand with NAO being their most powerful unit as of this writing (May 2015) Black Diamond is another good brand, and Streamlight also makes commercial headlamps.
The second thought relates to clothing.  I’m going to assume you do not have specialist fireproof clothes quick at hand.  If you have to exit a burning home you are safer running out naked rather than running through flames in synthetic nightwear. The synthetics will stick to you if they burn, with really nasty result.  If you wear clothes, wear cotton, which you can wet for safety.  If you wear gloves, use leather, not synthetics for the same reason.  Wear leather boots, not synthetic too.
If you decide to follow those suggestions, do one more thing:  buy extinguishers for all your cars too.   Everything I suggested will cost under $1,000 which is a comparatively trivial cost for such protection.
All my life, I have looked to my own resources for defense and protection.  So far, it’s worked.  It can work for you too.  Fire departments are great for big fires, and slow moving fires.  But they are of little help if you want to avoid widespread ruin after a home fire starts.  Protect yourself effectively, and you won’t even need to call them.
Hunter Thompson said it well.  “There is one rule in this house.  Never, ever, call 911.”  Look after yourself.

 Woof(c) 2007-2011 John Elder Robison

The James River shoreline, near Williamsburg, VA (c) John Elder Robison

Autism is a neurological difference that’s associated with some gifts and a great many disabilities.  For a person to be diagnosed on the autism spectrum, they must have significant impairments as a result of autism.  We may have gifts too, but disability remains the basis for diagnosis.  Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that.  Others live with significant medical compilations like epilepsy.  I’ve yet to meet anyone who celebrates that either.
At the same time, there is a growing body of evidence that autistic brain differences have facilitated some of mankind’s great accomplishments in music, engineering, science, theology and the arts.  The achievements are certainly worthy of admiration, but are the autism differences that facilitated them cause for celebration?  I guess that’s a matter of opinion.
I think neurological diversity is something to celebrate because different people do different things.  Ten typical people struggled to push a cart with skids, until an autistic guy showed them a wheel.  Without difference, our species would have come to an end long ago.  It’s diversity that gives us the species ability to cope with an ever-shifting world.
They say Newton was autistic, and his calculus is part of the foundation of the modern technical world.  Do we celebrate the tool, or the different mind it came from?  In today’s world the creator of Pokémon says he’s on the spectrum.  Do we celebrate that, or his accomplishment?  All around you, there are autistic people with exceptional skills and talents.  At the same time, there are autistic people crippled or limited by their autism.  It’s hard to reconcile the dichotomy of that.
I think autistic people – as a group - are worthy of celebration.  In American society we set aside periods for celebration of all sorts of people – women, African Americans, cancer survivors, and more.  Autistics are just as deserving of celebration as any other group, and in some ways more so because of our persistence in the face of marginalization and mistreatment. And because we’ve brought society many cool things.
But I personally don’t see this month as a time of celebration.  I see it as a time when autism is in the news, and in the public mind, and as a result, we build awareness and acceptance in the general public. 
We hope a more aware public will treat us better, and provide more assistance and accommodation.  A more aware public might understand why we behave differently and respond more appropriately in many situations.  Readers of my books have told me that, and I’ve heard the same said to other autistic authors. 
That’s a good thing.  The only downside to that kind of awareness is when autism is depicted in an unrealistic way – as devoid of disability – because that makes an ignorant public think we don’t need supports and services, when in fact we do. That’s a sad truth about our society.  The more eloquently a person is able to articulate their needs, the less support they are deemed to need.  We must always be conscious of that, when we talk about autism.
What about autism acceptance?  That’s the thing many autistic self-advocates focus on this month.  If you believe autism has been part of humanity forever then acceptance is the only point of view that makes sense.  If you believe in the value of human diversity, autism is as much a part of that as red hair. You may like parts of it, and you may hate parts of it, but it’s here to stay and you best accept that.
Always remember that accepting autistic people does not equal accepting autistic suffering or disability.  Many fine people devote their lives to relieving suffering in our population, whether through addressing medical issues like intestinal distress or by helping us make friends or find jobs.  That work is an admirable accompaniment to acceptance.
To do anything but accept, embrace, and support autistic people is simply mean.  It’s wrong. We did not ask to be how we are.  You may see us as different, but from our perspective, it’s the typical population who’s different. Every human has that right to acceptance, and we are no exception.  We bring great gifts to humanity by being here, and there’s a cost to have us.  Just as there’s a cost for every other human on the planet.
So what would I ask for this month? Volunteering at a local autism program can truly change lives.  Get involved in research as a volunteer or advisor. Stand up for autistic people in government.  Studies have shown that 100 dedicated people at the state house can absolutely move the positions of legislators.  Make friends with autistic people, and cultivate the relationships you already have.  There are a million things you can do that truly make a difference.
Make life better for autistic people.  Call that celebration, call it advocacy, but do something real.  That’s my best wish and advice for this April, whatever you want to call it.
John Elder Robison

(c) 2007-2011 John Elder Robison

NEW JERSEY MAN KILLED IN QUEBEC MAPLE SUGAR EXPLOSION – that is a headline you will never see, but tragedies like that happen every year. Yet the news is suppressed because no one wants to kill the cash cow.  The result: one unsuspecting innocent after another gives their life for tourism, as dollars make a one-way trip across the US-Canada border. 
 Quebec officials boast that they are the #1 producer of maple sugar and syrup.  “Vermont is a distant #2,” they say derisively.  Meanwhile rumors swirl.  Are they injecting maple growth hormone into their trees? How do they do it?  I don’t have the answer.  All I know is that maples are said to be exploding when tapped, and the jagged wood makes deadly shrapnel.  Arborists say it’s excess sap pressure, but who really knows?
What about the safety of the syrup?  I’ll take good old organic Vermont maple any day.  I don’t wear blood diamonds and I don’t eat MGH-enhanced blood syrup.  Who wants to eat maple candies that some poor farmer died to harvest?
Vermont has not had a maple sugaring fatality in years. Canadian maple sugar farms are littered with jagged stumps where proud trees once stood.  Ask what happen and the answers are vague.  Lightning, vandalism, or crazed loggers. 

The season is upon us, folks.  Know your syrup.  Be careful around the trees.  There’s a good reason forest peoples don’t sleep under tree branches.  Don’t find out the hard way.   (c) 2007-2011 John Elder Robison

What’s the most interesting difference between Indian autism and American autism?  I think it’s the way parents and others perceive it.
Indian and American scientists both lament the low level of scientific understanding in their respective countries.  What’s interesting is how that affects people’s interpretation of autism.
In American we have a secular culture of blame.  “Someone did me wrong” is an all-pervasive theme in our culture.  We interpret everything from the behavior of other countries to the conduct of ex-spouses through that lens.
When it comes to “interpreting autism,” that thinking has spawned toxic notions like, “mercury poisoned my kid,” “vaccine took the light out of his eyes,” and “big pharma conspiracy.”  To many who hold such beliefs, the idea of natural causes or no real cause at all is beyond the pale.
India, on the other hand, has a highly spiritual culture of acceptance.  That permeates Indian society and it’s part of what makes that country so different from our own.
When it comes to autism, people seem much more likely to attribute it to the work of one deity or another. Or it’s the result of actions in a past life.  Or it “just is.”  The difference between those thoughts and American blame is significant. 
Obviously scientists and autism specialists in both countries may have very different ideas of autism’s causes, but the average person in the street does not – in either country. And this is about them, not the science and professional communities (which are in many ways very similar.)
If you’re a spiritual person, you don’t question what is to the degree secular Americans question everything.  In India, that applies to many things – not just autism.  When you visit India, you can’t help being struck by the poverty all around.  With hundreds of millions of people living on a dollar or two a day, and no resources to materially change that situation, there seems to be little alternative to acceptance. 
My short time in India suggests that we Americans can learn something from Indians.  Their spiritual acceptance feels a lot healthier than our blaming.  When you deal with a situation like autism – something that “is, and will remain” – acceptance is a healthier place than anger and blame.
I can say that in America and it often unleashes a fresh round of anger.  In India, they just smile and nod.

What do you think?(c) 2007-2011 John Elder Robison

He’s a young man with Autism and Intellectual Disability who has been incarcerated since August 2013 as a result of behavior that results from his disability.  He has been held in solitary confinement for most of that time and is presently at a Virginia state prison. You can learn more about this case on the webpage the Arc of Virginia has dedicated to Neli Latson: http://www.thearcofva.org/advocacy/cu...
Neli is not a criminal. He does not belong in a jail or a prison.  His tragic situation is the result of events surrounding his initial detention which occurred, ironically, while waiting for the public library to open, and from subsequent mental health crises resulting from his confinement.  As Washington Post columnist Ruth Marcus put it, His journey through Virginia’s criminal justice system began four years ago, when he assaulted and badly injured a police officer who had demanded to know why Latson was sitting outside the public library.
Answer: He was waiting for it to open. Hint: He was a young black man wearing a hoodie.
“In effect Neli spends 24 hours a day locked in a segregation cell with minimal human contact for the ‘crime’ of being autistic,” his lawyers wrote to Virginia Gov. Terry McAuliffe. “Absent intervention, there is every reason to think he will remain there until the opportunity for effective treatment has been lost.”
All of us, as a community, should take a moment to help him out.  But for the grace of God, any of us could be in the same situation one day. 
WHAT YOU CAN DO:
Please call, email and Tweet the Virginia Governor and Attorney General, and the prosecutor, Stafford County Commonwealth Attorney Eric Olsen.  For Twitter, include the hashtag #freeneli and the handles of the Governor, Attorney General and prosecutor: @GovernorVA, @AGMarkHerring, @ericolsenforca  The message is simple: Neli deserves treatment, not incarceration.  He is not a criminal. 
You can reach the Governor by phone at 804-786-2211, by email form at this link: https://governor.virginia.gov/constit... or on Twitter at @GovernorVA.
You can reach the Attorney General by email form http://www.ag.virginia.gov/contactusf... or on Twitter at  @AGMarkHerring
You can reach the Stafford County prosecutor, Eric Olsen at (540) 658-8780 and on Twitter at @ericolsenforca. 
Best wishes for the new year
John Elder Robison(c) 2007-2011 John Elder Robison

That is a very common and unfortunate objection to essays describing life on the autism spectrum.  I heard (or read) quite a bit of that in response to my recent column in the MIT Technology Review.  The words seemed to come most often from parents who felt their kids have more major challenges than me.  Much has been written about calling people high functioning or low functioning.  With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.
It’s not accurate, and it’s degrading to us “high and low functioning people.”  Suggesting that, “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.”  People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago.  I didn’t like it then and I don’t like it now.
Both phrases imply I (and all others like me) are pretty good even though we are the “other;” some lesser class of human.  How would you feel about that, if it were you?
The problem with labels like these is that their meaning is insidious and we don’t always catch on right away.  Autistics like me were called retards in casual conversation by all sorts of people in 1965.  That does not happen anywhere near as much today, but phrases like “high or low functioning” have evolved to mean the same thing.  At their inception I don’t think they had a pejorative meaning.  Retard didn’t start as a pejorative either, for that matter.  But both do now.
I used to use those words and phrases myself, before I understood their meaning.  Now I know better.  I used to smile when I was the butt of jokes too. I smiled because I wanted to fit in and be liked, and the others laughed so I laughed too. Now that I understand, I cringe at those memories. I don't laugh at stuff like that anymore.

In 1965 we also used other names for levels of observed intellectual ability.  Moron or idiot, for example.  Those names are problematic for the same reasons. Those of us who are honored with labels like that feel the sting of being less, no matter what our functioning level.  You may claim that I can’t speak for others but I can say this: I have spoken with thousands of autistic people of all intellectual levels and not one has taken issue with that particular statement. Describing us as “less” always hurts.
But it takes time to realize that.  My dad had what my family an "idiot cousin who tended the pigs," back in Georgia.  That’s how everyone described him, growing up, and I pretty much ignored him because I was told, “he didn’t have any truck with people, just pigs.”  Today we would call Bob a non verbal autistic, and we might even find a way for him to communicate.  Sometimes we look back with shame at the things we said and did long ago, but we didn’t know any better.  Now we do, and rather than dismiss people like Bob we try and understand and engage them. 

That's more important today because society has changed. When my dad was a boy it was possible for a nonverbal person to have a life with farm animals and nature, out in the country, and be safe.  That's not so true now.  What we called "the mountain farm" is now a subdivision outside Chattanooga, TN.
We now know that our functional level changes with time and other factors.  As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70.  It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.
In the longer term many autistics grow up to be far more capable in society than they were as children, especially when compared to their same-age peers. My autistic son, for example, did not read till he was 10.  At age 9 he was in the lowest percentile for several developmental milestones. Now, at age 24, he is near the top.  But that does not mean he is not challenged by autism.  He is; just differently than as a boy.  What some called low functioning became something different through natural processes.
I’ve had the same experience. Psychologists say we learn adaptive strategies.  Neurologists think our brain pathways may develop later.  There are various explanations but they all boil down to this: autism causes developmental delay, and we may therefore be developing and improving much later in life than you might expect.  Many of us experience significant functional improvement in our fourth, fifth, and even sixth decades of life.  That would be unusual for neurotyopicals but it’s common for us.
As an alternative to functioning labels, consider describing someone has having particular challenges or not.  I am very verbal.  Other autistics are non-speaking.  A few don’t communicate successfully at all, in ways we understand, though they may still be trying.  Many of us have medical challenges of very different kinds.  To say that I speak and your son does not is not to call him less.  One day he may speak, and you won’t say that anymore.  Or maybe he will never speak.  You never know with this autism.
I often hear that head-banging, biting, and aggressive behavior sets some autistics apart from me.  Why?  I smashed holes in my walls as a kid, with my head. And I bit. When you ask yourself why we would do that, “being autistic,” is not the answer.  The answer is frustration combined with cognitive challenges.  Communicate with those people successfully, respect them, understand and help with their challenges, and most of those behaviors will moderate.  Do I presume to answer for every single case? Of course not, but I’m confident there is a lot of truth in that philosophy. 
The final issue I’d like to talk about is this: In our society, it is the bright and articulate who find voice in the media, in schools, and in workplaces.  They do that because their skill with words causes others to sit up and listen.  When those articulate people express thoughts about the economy or how we run our schools, we do not knock them down by saying, “Those are high-functioning views. People like my son don’t agree!” 
The autism spectrum contains people of every intellectual level.  Why is it that the bright and articulate autistics are attacked for possessing the ability to speak out about our shared autism? It always surprises me that parents attack me for what seems essentially being different.  I'm not their enemy.   I'm not the only verbal autistic person who's felt that sting.  "You're not a real autistic person.  MY son has real autism." 
When I talk about therapies that are needed, I consistently advocate for research that will benefit people whose cognitive challenges seem very different from my own.  I do that because I believe we have a societal duty to help all autistic people, not just some.  That’s what community is about, folks.  Attacking a community’s articulate members when they advocate for the group won’t help their less articulate brothers.  It just hurts everyone.
There is a valid concern that bears mention.  Autism has such a broad range of affect that your experience as an autistic person may have little or nothing in common with my own.  So I may not know much about your life from the mere fact that we are both autistic.  If I choose to speak up as an autistic person, I feel I have a duty to try and understand the full breadth of autism’s affect so that I can describe our shared spectrum fairly.  While “my spot on the spectrum” is obviously the one I know best, I recognize a duty to “speak my best for all spots” when I raise my voice in public.   I believe this is a general moral obligation that’s shared by anyone who chooses to speak for a common cause.

In closing I'd also like to point out that I have never claimed to speak for you, your child, or any other specific individual.  My words are my own; grounded in my life experience.  The idea that I have a duty to advocate for the breadth of the autism community is not a presumption that I speak for specific individuals.  It's simply a recognition that my words may be broadly interpreted as an "autistic voice" and I should try and make those words helpful and not harmful for autistics as a group.

Obviously the acquisition and dissemination of understanding is an ever-evolving process.  I speak out the best I can today, and when I learn more tomorrow, I will speak then with the benefit of that new knowledge.  That’s all any of us can do.

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 the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the US Dept of  Health  and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.(c) 2007-2011 John Elder Robison

Me, at age 2. Even then, I was #notmssng (c) John Elder Robison
Yesterday a new hashtag campaign appeared in my Twitter feed – Mssng. It seemed to refer to autism, and a new research project. I had an immediate reaction, based on my interpretation of the letters in the context of the autism discussion - I thought, Missing?  Certainly not.  We may be gifted or we may be disabled but we are definitely here.  And we are complete humans.   I posted that right away, and it launched a flurry of discussion.

My response seems to mirror the prevailing sentiment with respect to this campaign - autistic people are not missing, and nothing is missing from us. 
I wondered what the campaign was about, so I went looking. It’s an initiative by Autism Speaks to sequence the genomes of 10,000 individuals touched by autism.  In my opinion, that is a worthwhile thing to do.  I’ve written before about the value of genetic research.  But it is far from my #1 priority for the autism community. More on the why of that later.
Their choice of a name turned mssng from an announcement of a science initiative to a public relations debacle.  I think it’s seriously misguided on several fronts.
First – the community side
As I said in the beginning, autistic people are not missing.  We have always been here, and we always will. Yet I and many other autistics live with the knowledge that we occupy a world where autism is widely perceived as a disease or defect. I can’t speak for other autistics, but I don’t much care to be seen as diseased or defective. Nor do I like being seen as “missing pieces,” which the name mssng implied.
To say that is not to deny the very real ways autism disables us.  Rather, it’s a simple statement of fact.  Autism is a neurological difference, not a sickness.  As such, it’s here for a reason. Who are we, to second-guess that?  Remediate its disability – sure!  Wipe it from the world – that’s crazy talk, and societal suicide.
I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.
It’s not a name I’d have chosen.  I don’t know who did choose it but I’d bet they were not autistic.
An organization run by autistic people would not have made this mistake.  An organization run by non-autistics, autism parents, and autism grandparents DID make this mistake. Or perhaps to them, it’s not a mistake.  It’s just “Some autism parents speaking.”  But that is not what their organization’s name implies.
If “Autism truly Speaks” it by definition does so through autistics. That’s the only way it could speak.“Autism Observed” is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.
Those are very different things, and we should get our terminology right.
Second - the science side. 
The idea of researching autism at its most basic makes sense.  But genetic research is fraught with ethical challenges.  However, that is not its biggest problem here and now.
The biggest problem here and now is very simple:  Genetic research is an extremely long term game. The timeline to start a study like this, make a discovery, translate that to a possible treatment, and then get that treatment tested and FDA approved is 10 years at a minimum, and more likely 20 years.
So this effort won’t help any of the autistic children today.  Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse.
What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.
We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up.
If I were running an autistic-centered autism advocacy organization, I’d be making those things my #1 and #2 priorities.  I wouldn’t be talking genetics until I’d made some really solid progress on my main objectives.  Once I showed the community what I was doing for them today, I’d talk a little about the long term game. 
And most of all, I’d be looking around me, at autistic people leading the organization. 
I’m a big believer in science, and I absolutely understand that genetics may one day solve the riddle of why some people have spontaneous genetic mutations that lead to severe intellectual disability.  It’s led to some important discoveries and it will surely be key to more. But how many individuals who live with intellectual disability today will be helped by that?  How many autistic job seekers will get a job, thanks to that work?  How many autistic kids who wander dangerously will suddenly become safe?  How many autistics that suffer from anxiety or gastric distress will suddenly relax in comfort? Those are a few of the very real issues autistic people are actually thinking about now, and genetics isn’t one of the answers on tomorrow’s table.
Genetics is important.  But it is not job #1 for this community. Once again, with this effort, we are spending money in the wrong places.  We should not be trying to “solve the autism riddle.”  We should not be “looking for missing pieces of the autism puzzle.”  We should be Helping Autistic People – Right Now.
The misjudgments about priorities and the marketing mis-steps have overshadowed the science for now.  That's unfortunate, because the concept behind this latest effort seems to have a lot of merit.  And I'm sure it could have been enthusiastically embraced, had it been presented in the right context, with autistic oversight, and as part of a larger effort whose main thrust was directed more toward deliverable benefits.

That is my opinion, and my hope and wish for this holiday season.
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 the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of  Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.


(c) 2007-2011 John Elder Robison