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.

Thursday, December 11, 2014

What’s MSSNG in #Autism?

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.  In fact, a counter hashtag had appeared moments after I read it - #NOTMSSNG.

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.  When we consider a piece of research - and much is needed - we should never lose sight of the fact that people need help today, not in ten years.  Basic science is good, but applied engineering gets the roads and dams built. That is a very apt analogy for our situation.

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.

So what can we do, to avoid more public relations debacles like this, which hurt us all?  We can bring autistic people into positions of authority in all the agencies who speak for and about the autism community, and who fund research into autism.  If the organizations are guided by autistic thinkers we might all be surprised at where that could lead us.  And believe me, we need answers.  The challenges we face are all too real, and very diverse.

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.