Saturday, April 4, 2015

Should Autism be Celebrated?

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 Pok√©mon 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


Monday, March 9, 2015

Dangers of Genetic Engineering in the Forest

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 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 says they have not had a maple sugaring fatality in years, but who knows if that's true? Recent accounts suggest 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.  

Sunday, February 22, 2015

Autism in India and America



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?

Wednesday, December 31, 2014

Have you heard about Neli Latson?



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/current-advocacy-issues-and-activities/reginald-neli-latson/

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/constituent-services/communicating-with-the-governors-office/ or on Twitter at @GovernorVA.

You can reach the Attorney General by email form http://www.ag.virginia.gov/contactusform/contactform.aspx 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

Saturday, December 20, 2014

High Functioning People Like You Don’t Speak for My Child!



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.