Monday, October 6, 2014

Is Autism a Failure of Prediction?

This afternoon a group of MIT and Mass General researchers released a study called “Autism as a disorder of prediction.” In this paper, they argue that autistic people “experience things they don’t understand,” because our predictive ability is impaired.

Interesting as this sounds, a close reading reveals the premise as totally at odds with my lived experience.  I think of myself as a friend to those engaged in autism research, and I hate to come out in criticism of a newly released piece of work, but in this case I feel their conclusion are just wrong.

Anyone who has observed the prowess of a young Asperger video gamer would realize what a fool he'd be to bet against a kid like that's predictive ability.  But that's not all.  The hypothesis of this study does not hold up any better in my "real world" experience.

I do have some social disability, even now. My problem is that I cannot read the unspoken cues from people around me.  My ability to evaluate what I do know – and to predict from it – is not weak at all.  In fact, as a logical thinker it might even be stronger than average.  In other words, I have a weakness in data input, when it comes to human-on-human engagements.  Too much of the wrong data and not enough of the right data equals trouble, even with the best predictor in the world.

No wonder we stim and compensate.  They nailed that. 

Otherwise, with all due respect, this paper seems to be a perfect example of what happens with autistic behavior is interpreted by neurotypicals, as opposed to having the behavior explained by those who live it.  The study’s authors spend many pages expounding on an explanation of behaviors such as I describe in my own books and essays (Look Me in the Eye is one of their citations) when a conversation with an intelligent, insightful autistic adult could have set the whole thing straight.

Allow me to offer a comparison to put this in perspective.  Imagine that an alien social scientist observes a human population and notes some puzzling and different behaviors.  Some of the people eat some meat, but no pork.  They call themselves Jews.  Some of the people don’t eat meat at all, and they call themselves Vegetarians.  Some of the people don’t eat bread, and they call themselves Gluten Intolerant.  Some Gluten Intolerants eat meat, and some don’t.  Then there are the ones who call themselves Catholics, and their strange seasonal aversion to meats.  They refer to the aversion as Lent, and researchers scratch their heads to determine who’s the borrower and exactly what was loaned, to render Catholics unable to eat like the others.

Why the different behaviors?  After careful observation, the researchers concluded that the Gluten Intolerants had the answer.  They admitted to a biological deficiency; they cannot eat the foods others consume with gusto.  Researchers hypothesized that Vegetarians and Jews were similarly affected but their food limitations were subtler.  They even suggested some meats may be toxic. After reading about empathy, one researcher concluded the Catholics lent some un-discovered digestive process to their fellow men for a period, so they too could be healthy.  Their paper describing these discoveries was published to wide acclaim on Alpha Centari, but the humans mocked its conclusions when they read it back on Earth. The humans in the Alpha Centari zoo just snarled. The researchers wondered why.

An old Gluten Intolerant offered them a piece of wisdom.  “Did you ever ask one of those Jews or Vegetarians about eating meat?  I’ll bet they could give you the answer, and it isn’t what you think.  It may be a mystery to you, but it’s no secret at all to them.”

The thing is, as aliens, they had absolutely no concept of religion.  And the only thing they could conceive for Vegetarianism was the general concept of disability. The idea of a life choice was too strange to consider.

To an Autistic like me, this news is much the same. What it shows most of all is not insight, but the obliviousness of the researchers. I do not have a disorder of predictive ability. I've met many other autistics and I can't think of a one with predictive disability. These researchers cited a line from my book as support for their hypothesis, when in fact the whole book expanded on my thoughts at considerable length, and made amply clear why I have trouble in social settings, and it's not poor prediction capability.  How about you?

Having said that, I concede that there may be differences in how I predict things as compared to how neurotypicals predict.  But this study does not answer that possibility, nor does it present any new evidence for what a difference might be and how it might happen.  The autistic narratives the researchers cite don't distinguish input problems from processing problems in most cases.  In any case, their interpretation takes those writings quite far from the context in which they were intended. 

As an autistic person I don’t perceive the same things as neurotypicals.  I make my decisions based on different incoming data.  It stands to reason that my predictions will be different because the inputs to my predictor are not the same.

What’s the takeaway here?  Bring the members of a community you want to study into your process at the beginning.  Be guided by their knowledge, culture, and wisdom. Don’t let ignorance of another culture lead you down a wrong path.  It’s wasteful at best, and can make you look like a fool.

As the neurodiversity activists say, nothing about us, without us.

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 Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.

Thursday, September 18, 2014

When Medical Research Ethics Fall Short

A short while ago I was asked my opinion about a promising new treatment for depression being evaluated at a prominent research hospital.  I looked at the description on the hospital’s website, and it did indeed look interesting. I called the study coordinator for more details.

He told me the therapy involved adding energy to parts of the brain that might be involved in depression, and evaluating the results over a period of several months.  After my experience with TMS (which adds magnetic energy to the brain) I felt the idea sounded promising enough to be worth exploration.

Patients who enrolled in the study would go to the hospital twice a week for the duration of the study, which would be 2-3 months.  Then we got to the “fine print.” Half the participants would get the therapy, and half would get a placebo (a treatment that does nothing.)  Hearing that, I asked if the people in the placebo group would have the option to come back after the study sessions, and get the real treatment.

“No,” he said, “we don’t have funding for that.”  Wrong answer, I thought to myself.

When scientists construct a study that tests a new therapy for depressed people, they have an ethical duty to their subjects, and the structure of this study falls far short of what I’d find acceptable, as an ethical advisor.  I was surprised it made it past the hospital’s review board.  I was tempted to raise the question with them, but I didn’t.

If you’re testing a therapy that might help gifted kids read faster, this design might have been ethically ok, because volunteers in such a study would not be described as “suffering.”  People who enroll in a depression study are certainly suffering.  Asking a population that lives in pain to volunteer for research while withholding possible pain relief from half of them is morally wrong. Period.  There’s not much room for discussion about that, in my opinion.

We’ve gone down this road with autism pharmaceutical studies, where policies have evolved to the point where people who get a benefit from experimental medications can continue to take them after the study is complete.

Anyone who signs up for a study like this does so in hopes of gaining a benefit.  They don’t sign up to be “control patients” who get a sham treatment for purposes of comparison.  No one would knowingly do that.

“We thought they’d sign up to get the money,” the study coordinator told me in a weak voice.  Two hundred dollars for eighteen sessions, each of which takes 3-4 hours out of your day?  Let’s get real.  That’s two bucks an hour; an inducement that I found insulting at the suggestion.

“We had a really strong placebo response,” he told me, in a further effort to justify the flawed study design.  I’m aware of that effect, and it wasn’t surprising to hear him say that.  Basically, what he was saying was that patients who received a sham treatment reported almost as much benefits as patients who got the “real thing,” and the researchers wanted to separate people who truly got better from those who just imagined they were better.

That’s a real and valid concern in medical research where the power of positive thinking can make people think they are better even when they didn’t receive any medical value from a treatment.  We often see placebo responses that are similar to the real thing.  So how should researchers tell them apart?

One good way – in a psychiatric treatment like this – is to double the length of the study and give each subject both therapies. The subjects can be told they will be tested with two possible treatments, one of which is a placebo.  Half the group gets placebo first, half gets the actual treatment first.  Each group gets the other treatment after an appropriate “cooling off” period.  That way, the placebo effect can be compared in the same individuals.

The alternative would be to offer the actual therapy to the placebo patients after the study has run, and after announcing they were in the placebo group.  That would be ethically incorrect if it came as a surprise, but it would be OK if people were told they might be in a placebo group at the outset.

“Those are good ideas,” the coordinator told me, “But we didn’t have money to do what you suggest.”  How does one answer that?  Is it better to run an ethically flawed study in hopes of a strong result? Or is it better to hold off until an ethically sound study can be funded?  Now we have a different ethical question – one of benefiting the few versus benefiting the many.

The design of this study did not have the potential to harm participants directly but it could increase suffering for those who discovered they were in the placebo group.  It certainly subjects half the study participants to hardship for no real benefit.  Is it OK to do that to twenty people in hopes of developing a beneficial therapy for thousands?

I think the answer is no, when we place the study in context.  This is a well-funded research hospital, and when we consider the costs to save the twenty initial subjects from possible pain, that cost is trivial in the broader scheme of things.  The study should be properly designed and funded, or not done at all.  Getting funding is the researcher’s job.  You don’t save money at the expense of your subjects, unless there is no possible alternative, and a huge comparative benefit.

This study is not a “one or many” example where one person is sacrificed to avoid the sure death of a thousand.  That’s the stuff of action movies, not medical science.  This is considerably more pedestrian but still important to the patients who trudge to the hospital for three months, and get nothing for their depression but a thanks for helping science.

The final argument - That's the way we've always done these studies - is just disappointing.  Two hundred years ago, unsuspecting animals and sometimes people were dissected while alive, in the name of what was then legitimate science.  Ever hear of "Anti-vivisection societies?" That was what got them going.  Ethics evolve, and this is an example where evolution is called for today. 

As someone who has served on several medical research ethics boards I found it troubling that a major hospital would design a study with such obvious (to me, at least) ethical flaws.   What do you think?  Am I missing something here?

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 Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.

Sunday, September 14, 2014

Fall is the season for Fairs

One of the things I love about fall is the fairs and carnivals.  The biggest of them all – where I live at least – is the Big E in West Springfield, Massachusetts.  It’s two weeks and three weekends of action, and I take thousands of photos there every year.

One of my favorite places is the circus tent, where I see things like this:

Professional cat catchers stand ready to rescue a leaping feline

Playing with fire under the circus tent

Motorcycles and acrobatics, fifty feet off the floor. With no safety net.

They've always got a full house, so get there early

You will never guess what came out of that little box

I love the brilliant colors, the lights, and the patterns.  And I admire the skill of the performers.

My next favorite place is the concert stage.  I've only been to two shows so far this year, but both were great.  Does anyone know who these performers are?

And we can't forget the horses and all the other animals  . . .

What are you favorite images of the fair?

The photos above were shot with Nikon Df and D3s cameras, and 28-70 and 70-200 2.8 lenses.  An SB910 flash was used for some shots.  ISO ranges from 400 to 3200.  All images (c) 2014 John Elder Robison

Friday, August 29, 2014

A Briefcase Full of Dreams

Where were you in ’78? I was 21 years old, trying to make a place for myself in a world of adults.  My clients were musicians, but the people who paid me were businessmen, and I had to make a good impression.

That meant button up shirts, a nice pen in my pocket, and the ultimate professional accessory . . .  a real leather briefcase.  Fifty dollars was a lot of money for me then, but I must have chosen well ‘cause it’s still in good shape today . . .

Outside – quiet and conservative.

Inside – rock and roll passes and sound engineer business cards told the rest of the story.  No corporate drone here! 
  • A card from M Kluczynski, president of Britro, Pink Floyd’s sound company;
  • Backstage passes from Phoebe Snow, Duke Ellington, Talking Heads, The New Riders of the Purple Sage, Roxy Music;
  • A faded pass for the James Montgomery Band says Manager;
  • A pass for the Return of KISS at Madison Square Garden says Crew;
  • Stickers for Sola power supplies and MXR special effects.

Underneath, I had a receipt book so I could get money, diagrams of amplifiers I might have to fix, schematics for things I'd just thought up, and bills I struggled to pay.  It was a hand to mouth living in those days, but it was a fun time, too.  It was a time of sadness, excitement, discovery, and adventure.  I probably should have died a dozen times over, but I'm still here.  There aren't any pictures from those days because there wasn't any time for photos. I had to work! And work I did.   

Those shows were the stuff of dreams for a sixteen year old failure and a high school dropout.  Yet they all came true, five short years later. But like all dreams, they changed and evolved.  

Ten years later, I’d left music behind and I was an electronics executive

Ten years later, I’d left electronics behind and I was restoring and fixing cars

Ten years later I was photographing performers and thinking about writing a book

I could never have predicted any of that, when I bought that briefcase.  I remembered it all when my mother and my wife Maripat found it stored away, and brought it back to life for my birthday.  It just goes to show . . . . you really never know . . .