Autism Awareness Month 2016: Closing Thoughts

As Autism Awareness Month draws to a close I have some thoughts I've been reflecting on.  Neurodiversity is not actually a new movement.  It's at least 100 years old evident by the philosophies and practices of Dr. Asperger and colleagues' work in pre-WWII Vienna:

"Asperger and Weiss worked on a ward at the Children’s Clinic founded in 1911 by a physician, schoolteacher, and social reformer named Erwin Lazar. His approach to special education would still be considered innovative today. Instead of seeing the children in his care as flawed, broken, or sick, he believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning."[i]

But with the destruction of his clinic his work fell into obscurity and left an opening to be filled by a much darker narrative.  For decades Drs. Kanner, Bettleheim, Rimland, Lovaas, (and still today) Wakefield took advantage of a populous that was vulnerable[ii] with agendas driven by ego, money, fabrication, and many more unethical practices.

Dr. Lorna Wing rediscovered Asperger's work in the 1970s and then broadened the diagnostic criteria to include people who were struggling but ineligible for services due to having no formal diagnosis.  This led to an upsurge in prevalence but with it more panic.  But in reading the forgotten history of autism laid out in NeuroTribes I see it as honoring Asperger by restoring the spectrum[iii] that Kanner artificially truncated.  Neurodiversity advocates now are reclaiming/reviving his work. But that leads to some hazards...

"History may not repeat itself, but it often rhymes" - Mark Twain

Time and again different philosophies go in cycles, falling in and out of favor.  For example: educational constructivism vs. didacticism, medical vs. social models of disability, Dualism that postulates mind and body as separate entities vs. Monism[iv].  This could explain the stigma surrounding mental health when it isn’t seen as legitimate as a concrete physical ailment vs. something in the mind you supposedly control.  Far too often people coping with depression etc. are told to “just get over it.”

It has been said that autism is both a difference and a disability.  To avoid the vicious cycle of progress/decline we must reconcile all these views.  To genuinely help people on the spectrum (and with other atypical perceptual styles) it is imperative to:

1.       Identify and mitigate disabling aspects.  This must be done in a way that respects individual agency.

2.       Educate and advocate for tolerance and acceptance in the public consciousness of benign differences.

3.       Above all, the underlying strengths that have been left by the wayside in favor of normalization must be brought to the forefront and nurtured.

With these goals in mind, this year I founded NeurodiversiTC: The Neurodiversity Initiative of Teachers College, Columbia University with the aim of reaching across departmental lines, unifying teachers, counselors, clinicians, policy makers, et al.  Where this goes and how successful it will be has yet to be seen.  These are not easy questions so we cannot expect easy answers but in laying out the issues we can decidedly work on them.

---

[i] Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 84). Penguin Publishing Group. Kindle Edition.

[ii] And even gullible to any so-called expert with the title “doctor”

[iii] Originally phrased as a "continuum" by Asperger’s diagnostician Georg Frankl

[iv] McLeod, S. A. (2007). Mind Body Debate. Retrieved from www.simplypsychology.org/mindbodydebate.html

Educating a Neurodiverse World

My talk via TEDxTeachersCollege (filmed Friday March 28, 2014; uploaded Wednesday July 23, 2014).

Today, I'm going to talk to you about Neurodiversity.  If you're unfamiliar with the term, first consider Biodiversity.  Our planet has billions of life forms:  all kinds of animals, plants, etc.  Even within humans there is immense variation in skin color, eye color, hair color, body features...Do you think there would be just one, standard-issue brain?

Neurodiversity is the philosophy, and burgeoning civil rights movement, that many conditions we think of as disorders, disabilities are actually natural expressions of variation of the human brain and mind.  Giving rise to various cognitive orientations.  As Temple Grandin says, "Different, not less."

Let's take Autism for example.  Autistics have incredible attention to fine detail, pattern recognition, motion perception, long memories.  Many are attracted to systematic, technical fields like programming and engineering.  Silicon valley is full of them.

Then there is the so-called Attention Deficit Disorder.  These people are very high energy, divergent thinking; often creative.  They tend to be risk-seeking so they do well in areas of business and as entrepreneurs.

Further there is Dyslexia.  These people have good peripheral vision.  Able to see wide, big picture, whole systems.  They often do well in creative pursuits like art, design, theater.

I am autistic.  'On the spectrum' as they say.  Diagnosed with Asperger's Syndrome at age 21.  I don't think verbally.  I think visuo-spatially; pictures, patterns.  It's quite challenging to compress my thoughts and articulate them within the confines of language.  (That's why I'm using so many visuals here.  To give you some insight.)
Thinking in images and patterns has served me well in math and statistics.  I can visualize quantities as lines and curves.  Just look at equations and move the symbols around with my mind.  Here I draw on a whiteboard and my bathroom mirror.

Now we can look back in history and find some of the greatest minds had traits like these.  Scientists like Newton, Tesla, Turing, Curie, Einstein.  In the arts:  Mozart, Van Gogh, Glenn Gould.  Writers and poets:  Hans Christian Andersen, Emily Dickinson.  Philosopher, Immanuel Kant.  Statesman, Thomas Jefferson.  "It seems that for science or art, a dash of autism is essential1."

Now these people died long ago so we can't know exactly what their diagnoses were or would have been.  But what we do know is they were anything but neurologically typical.  They were eccentric and it's thanks to their unique minds they were able to accomplish such feats.  Though I'm concerned, where will the next generation of great thinkers and innovators come from?

Genius is rarely recognized in its own time.  Especially in this society that favors normality:  conformity to what is typical, ordinary, expected, average as if this were the highest ideal.  People who are creative, think differently, outside-the-box are often ostracized and scorned because they don't fit the social order.  Studies have shown that such children are given poor marks by teachers who favor compliant satisfiers.  Now we have children as young as 3 being medicated as chemical restraint.  Behavioral interventions designed to suppress their natural feelings, force assimilation just so they can appear 'indistinguishable from their peers.'  Quoting Faith Jegede, "In all honesty, the pursuit of normality is the ultimate sacrifice of potential."  And I would add, "The surest way to corrupt a youth," according to Nietzsche2.

Now to realize how we got such a system we just need to look back as Sir Ken Robinson noted.  Our school system came from the Industrial Revolution, designed to run along factory lines, prepare children to become factory workers.  But the factory model assumes a homogeneous lot of raw materials, processed simultaneously in batches, moving along and at the end of the line they are sorted and graded to see which units are best fit for consumption.  Because in the factory, quality just means consistency.

Our assessment methods come from the dawn of the 20th century, during the Eugenics Movement.  The presumption that some people are just inherently better than others.  They have latent ability we cannot see but you can have more or less of it, and the purpose of the tests is to uncover these supposed differences.  It's always been about sorting and classifying people, giving them ranks.  A competition to see who is close to, or far, from the norm; often the average set by some prior reference sample.  That's how IQ works.  They can't have a test where everybody performs the same, good or bad, because if the test doesn't discriminate you from your peers then it doesn't have any "test information."  But we don't all come out of the same mold.  As in this example3, if you judge a fish by its ability to climb a tree it will spend its whole life believing that it's stupid4.

Though we could turn the tables, like in this picture:  an octopus playing with puzzle blocks underwater and in the other tank a cat...a cat that has drowned.  A cat, that may otherwise be an excellent climber, fails in this situation.  It goes to show the notion of disability isn't necessarily about inherent flaws, but different sets of abilities and a mismatch with the current environment and tasks at hand.  As that test may be reliable, valid to compare the octopus to a larger population of octopi and ranking it within.  But all too often, an instrument calibrated to just one population is taken as a general test of aptitude, applied broadly and then somehow find entire races, ethnicities and other demographics are deemed inferior.  It's self-fulfilling prophecy.  You might try and justify it by saying it's meritocracy.  They've been measured, evaluated, and found lacking.  But here, "measurement" is just a convenient pretext to reinforce classism.  I should know, I'm getting a Ph.D. in this field and it desperately needs reform.

Can we allow such archaic systems to persist in the 21st century?  Clearly we need to change, and we can't wait on Superman to come fix our schools.  We must change and we can change, but not if we keep using the same old thinking that created the problem, as Einstein noted5.  There's no easy answer.  We can't just throw money at it.  We have to break it down, rebuild, redesign.  Think hard.  What do we want our schools to accomplish?  What should be their purpose?  I, for one, don't want to see schools that run like factories, treat teachers like assembly line workers, or worse yet, the machinery.  No.

In my vision, young students learn their basics like reading and writing, but beyond that it's a much more individualized, tailored approach.  Students could have greater liberty to pursue their interests and talents.  They would be in competition with no one but themselves.  Challenged, motivated to grow, develop, and learn more than they knew the day before.  As my Sensei puts it:  don't beat others, beat yourself.

We could do away with the large high-stakes summary judgments and employ and more ethical use of testing.  Formative, diagnostic assessments based on objective criteria that show how far you've progressed in mastering some domain.  They should be frequent, ongoing, useful to guide teachers and students like GPS:  show where you are, help you find where you're going.

Then maybe we could have a wonderful society where all kinds of people with all kinds of minds, abilities, talents, perspectives would work and come together like a grand orchestra and create a world far more beautiful than any one mind could.  A world of neuro-diversity and neuro-harmony.

I'm going to conclude now with a poem that captures this theme and was a great inspiration for me in making this talk:

There are all kinds of jobs to be done in our world.
So, it’s a good thing that we have all kinds of minds to do them.
Luckily, every kind of mind has some kinds of mind work that it can do to make the world a much better place.
But first, we all need to understand our own minds.
Wouldn’t it be great if we could all feel good about our own minds?
Wouldn’t it be fun if we could all enjoy and respect each others’ kinds of minds?
Then we might live in a world where all kinds of minds would be happy and proud to be living all kinds of lives6!

1. Dr. Hans Asperger, who exhibited traits of the syndrome named after him.
2. "The surest way to corrupt a youth is to instruct him to hold in higher esteem those who think alike than those who think differently." ~ Friedrich Nietzsche
3. Cartoon of a black bird, monkey, penguin, elephant, fish (in a bowl), seal, and dog lined up with a tree behind them.  A man at a desk tells them "For a fair selection everybody has to take the same exam: please climb that tree."  Larger caption below says "Our Education System."
4. Often attributed to Einstein but its origin is uncertain.
5. "We can't solve problems by using the same kind of thinking we used when we created them." ~ Albert Einstein
6. Dr. Mel Levine, All Kinds of Minds, p. 275

Further references here

Pseudologic of Genetic Predictions

An acquaintance of mine just wrote an interesting piece titled It’s Time to Stop Pouring Research Money Down the Genetic Sinkhole which alludes to an undeserved faith people have in the predictive power of genetics.

Although autism is becoming more widely understood as a neural difference, not a “psychiatric disorder,” it is one of the profiles that is subject to this intense witch hunt. In his article [Five Decades of Gene Finding Failures in Psychiatry], [Jay Joseph] mentions autism in passing, as an example of one of the many areas where genetic research has been a failure.
[...]
But the problem is larger than that. Science understands (if one can even be so generous as to use that word) a very tiny fraction of the human genome. Most research to date has focused on the 1% or so of DNA that codes for proteins (i.e. has the genetic instructions for making the proteins that constitute the human body). The other 99% remains pretty much a complete mystery, although progress is starting to be made in analyzing that. The ENCODE project (ENCyclopedia Of DNA Elements) is still very much in its infancy.

Conditions (defined by behavioral observation) may correlate with certain genetic markers, but if we only observe the genetic markers how well does it predict these other conditions?

The fact is science is not a perfectly deterministic system.  Randomness and uncertainty affect all observations/measurements.  As such, we are stuck dealing with conditional probabilities.  Trying to exactly equate these logical propositions is inherently flawed and likely to fall victim to the Base Rate Fallacy.

(found this on Facebook)

Basically you are looking at the overlap of the events, e.g. Pr(moon & chicken) or Pr(autism etc. & genetics), and the proportion of that joint probability to that of the single event you condition upon; whatever serves as the predictor.

Few people have been to the moon so that is a rare event that greatly overlaps (or is encompassed by) chicken-eating.  Flipping it around (via Bayes' Theorem) we see a ton of people have eaten chicken but only a tiny few have ever been to the moon, therefore chicken-eating is not a good predictor.

For those who are more mathematically inclined:
Pr(A|B) "probability of observing A, given B has occurred or is known"

Genetic researches must assess the prevalence of these so-called markers in the general population.  Otherwise the strength/validity of the observed associations is highly suspect.

Taken to an extreme, we see the dystopian future depicted in the film GATTACA (one of my favorites).  Everything is the product of extreme eugenics engineering.  Anyone conceived in the old-fashioned way is an "Invalid."  I find this scene very poignant where this detective is speaking to the director about exceeding potential:

(At 1:25)
"No one exceeds his potential"
"If he did?"
"It would simply mean we did not accurately gauge his potential in the first place."

This big admission of their methods' fallibility really struck me.  You can never absolutely gauge potential. It's impossible. Measurement is an inherently flawed process. In my line of study, we try to design measurements/tests that are reliable but we have to account for the uncertainty from random error. We try to increase reliability by minimizing error but no measurement is perfect as that would require infinite precision.  If someone's job or life is at stake, you better have some strong evidence. The people in Gattaca were overconfident in the scope of their measurements and ignored the inherent limits of the information.

Even Edward Thorndike, one of the pioneers of psychological measurement, acknowledged that such tests are imperfect and were never meant to be an absolute prediction of your station in life (unlike his contemporary Lewis Terman):

"On the other hand to assume that we have measured some general power which resides in him and determines his ability in every variety of intellectual task in its entirety is to fly directly in the face of all that is known about the organization of intellect." (p. 126)

Thorndike, Edward L. (1921). Intelligence and its measurement: A symposium--I. Journal of Educational Psychology, 12(3), 124-127. [pdf]

All autists are equal, but some are more equal than others

I'm becoming increasingly disillusioned with the so-called Autism Community.  It started last year when I wrote in this blog a post that got a ton of backlash.  I felt discouraged from writing since then.  Many of the readers/commenters grossly misinterpreted my ideas.  They thought I was advocating being passive in the face of abuse when actually I was talking about the need to be mindful of our speech/actions so that we are not contributing to the number of enemies and negative public perception.  For an analogy, imagine fighting a raging fire.  You must be able to contain or slow its spread.  If it grows larger, faster than you can gather/apply water you will never put it out.  That is a mathematical certainty. 

I think there is this notion that autistics are pure, innocent victims of unjust persecution so any hint of blame is seen as outrageous.  While it’s not exactly a war of our own making, it’s worth pointing out the part we can play towards breeding and prolonging conflict.  You can’t advocate for being viewed as comptetent/intelligent but ignore accountability.

I have seen a quite a bit of vitriol, rhetoric, and venom spewed forth by my peers.  That is what I wanted to caution against when I wrote Don’t Make Enemies.  Ironically, that is just what happened in the ensuing “discussions.”  Lydia Brown (author of Autistic Hoya), remarked:

Today, I am very disappointed in many of my friends and in myself.
I posted a link on Friday to a blog post by a friend, which at first generated mostly thoughtful and interesting discussion about its content. The discussion rapidly devolved over the last two days into name-calling, swearing […] and finally, actual physical threats […]
Almost every single person who participated in the "discussion" is Autistic. (I can only think of one person who wasn't offhand.) This saddens me, because while I personally took great issue with many of the things that were written in the original blog post to which I had linked, this fact more than proved many of the observations that its author made about vitriolic rhetoric. The world is watching us, and if all the world sees is that Autistic people are incapable of mature, calm, and respectful dialogue (and respectful doesn't have to mean "polite" or "denying problems exist" or talking to people who actually want to hurt you) amongst ourselves, never mind with the public, then we will NEVER be listened to and our ideas will NEVER be taken seriously.
April 15 at 4:07pm

And yet I was met with accusations of being the "tone police”, engaging in lateral oppression, and unfairly derailing arguments.  First off, lateral oppression is an absurd notion since if we're truly peers, by definition I don't have any power or authority over you.  Of course an argument should be judged by its merits (e.g. coherence) but there are tons of logical fallacies and possible errors in reasoning.  Pointing them out is necessary in debate/discourse.  However I’ve noticed many instances of someone crying 'derail!' as merely a plea to ignore the faults in their arguments and drop the counterargument(s).  Ironically, that would be an actual derail.

I get the sense that arguments that don’t toe the party line are taboo.  It's a slippery slope from dissent to thought-crime if we arbitrarily judge who is a REAL autistic advocate and what they *should* say.

This idea of an Autism Community is a farce.  It’s about as united as the United States.  What we have is a bunch of people who are angry (somewhat justly), highly opinionated, thin-skinned, and hegemonic.  Chained together by a common label “autism” but pulling in different directions and bickering about where to go and what to do.  Except, there is no one right direction.  It’s erroneous because while the symptoms may appear to be superficially similar, in all likelihood these are different underlying conditions with varying challenges and needs that are not being met by perpetuating a false equivalence.

Don't Make Enemies

I was driving across the USA on a family vacation while I was reading John Elder Robison’s book Be Different that I came across this pearl of wisdom.

Learn to coexist peacefully. Even if you can’t make friends, don’t make enemies.  

Don’t tease, torment, or provoke other people. Don’t be a bully yourself.

Try to understand the other person, and by doing so, make a peaceful connection.

He was writing about his own experience with bullies.  It reminded me of my father’s advice about “picking your battles” but it also struck me how similar this is to Aikido’s philosophy of non-aggression.  Suddenly I had an epiphany and the phrase “don’t make enemies” inspired a new outlook on peace and conflict resolution.

In the Art of Peace we never attack. An attack is proof that one is out of control. Never run away from any kind of challenge, but do not try to suppress or control an opponent unnaturally. Let attackers come any way they like and then blend with them. Never chase after opponents. Redirect each attack and get firmly behind it. 

-- Morihei Ueshiba, The Art of Peace

 This is apparent in the physical technique of Aikido.  As an attacker reaches to grab or strike we blend with the motion so that they over extend and put themselves off balance.  When they are in a weak position, it is simple to apply a technique to redirect, control, disarm, or immobilize them. 

 The blending (“aiki”) is important to reduce the attacker’s power and not give him anything to resist.  In contrast, hitting back creates tension and feeds into the cycle of violence.

Conflict can take many forms (weapons, fists, words, etc.).  I believe it’s important for those who practice the way of advocacy to employ techniques to bring harmony.  The Autistic community is such a small minority and we are greatly outnumbered.  We cannot achieve our goals with mere force.  

Our success will depend on how many people we can convince to support us and the justice of our cause.  There is a great many people who are generally unaware of autism.  I view them as an untapped resource.  It will take a gentle, respectful approach to cultivate and not spoil them.

I’m a little disappointed by the tone I’ve seen in many writings and dialogue by my peers.  I have seen a lot of inflammatory rhetoric and I fear that is counterproductive to the message.  Language that may insult the audience will not bring them closer to your point. Rather, it will turn them away, incite stronger opposition, alienate potential allies, and possibly lose current ones.

I can't claim to know others' motivations but I suspect the fallacy of the false dilemma.  Rigid, black-or-white thinking is common among autists but sometimes it doesn't fit the situation.  It’s a naïve way of thinking to believe everyone is either with you or against you.  Ignoring the possibility of neutrality makes you overestimate the real number of enemies and puts excessive stress on yourself.

I urge my fellow advocates to take a step back and think about these principles.  In short, “don’t make enemies” means we must increase the number of our allies while keeping constant (or reducing) the number of our enemies. 

The Way of a Warrior, the Art of Politics, is to stop trouble before it starts. It consists in defeating your adversaries spiritually by making them realize the folly of their actions. The Way of a Warrior is to establish harmony.

Debut

Welcome to my new blog.  I am a 27 year old autistic graduate student that's decided to join my brethren who engage in advocacy and blogging.  My official diagnosis is Asperger's Syndrome.  This is often described as "mild" or "high-functioning" autism, but there are problems with such labels.


There is immense variability in the expression/symptoms of autism (both in kind and degree).  The clinical term 'Autism Spectrum Disorders' (ASD) presumes one continuous, ordered dimension of variability that, frankly, I think fails to describe the reality of the situation (see above quote by George Box).


I honestly believe autism is a multi-faceted condition (you're born with) that arises from the neurological structure of the brain.  As a statistician, I am interested in identifying and measuring the multiple underlying attributes so we can design and evaluate treatments/therapies tailored to the specific needs of every autist.


Autism brings many challenges but there are also strengths to be found.  For instance, I have a very high IQ, an excellent memory, hyper-focus and attention to detail which has served me quite well scholastically.  I am not of the camp that views autism as a sickness to be "cured."  I support neuro-diversity, i.e. the belief that autism, dyslexia, and many so-called disabilities are natural variations of the human mind.  The renowned autistic advocate/author/professor Dr. Temple Grandin has said, "The world needs all kinds of minds."


Another inspiration to start this blog is my passion for martial arts.  Specifically, I practice Aikido which is often translated at "the way of the harmonious spirit." Ai - joining, unifying; Ki (a.k.a. Ch'i, Qi) - energy, mind, spirit; Do - the way, the path.  Someone who practices Aikido is called an aikidoka.


We don't really fight or hit back in aikido.  It is a defensive art where we use the attacker(s) momentum to throw/control/restrain them.  It was founded in the 1920s-30s by Morihei Ueshiba (called O'Sensei for "Great Teacher") who combined his martial training with his philosophy of compassion.  He believed attacking only prolongs the spirit of conflict so he developed an art where you can defend yourself without harming the attacker.


"To injure an opponent is to injure yourself. To control aggression without inflicting injury is the Art of Peace."

Videos on the practice and history of aikido: http://goo.gl/4Zskx  http://goo.gl/H6VF2


I'm really fascinated by O'Sensei's philosophy about conflict and harmony. It recently occurred to me that this could be a good approach to autistic advocacy; which we all know is full of conflict. I took the words Autistic (which originally referred to withdrawal into the self) and Aikido and combined them to get the name of this blog; Autistikido.

I hope for this blog to be a forum to share my thoughts, observations, philosophies as well as be an educational resource to dispel ignorance and misconceptions.  There are a lot of great bloggers and resources already out there so I have posted links to their works (see right-hand side).  I can respect that readers may have differing opinions but I ask that you be respectful.  If you have a burning desire to attack me or make hateful comments, please save your energy and go somewhere else on the web.