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.

Monday, November 3, 2014

Q&A - our TCS high school program for students with autism and developmental differences

TCS Auto Program in the Springfield Automotive Complex, Springfield, MA (c) J E Robison
We are in our second year of the TCS Auto high school program and we’re starting to get questions about the program.  I’ve listed a few common questions and answers below.

Who is behind the TCS Auto Program?

John Elder Robison, an autistic adult and advocate for people with neurological differences, originally envisioned the TCS Auto Program.  John is the founder of Robison Service – a high-end auto service and restoration business – and an owner of the Springfield Automotive Complex, a multi tenant garage complex in Western Massachusetts.

John is also the Neurodiversity Scholar in Residence at The College of William & Mary, and the author of four books on life with autism.  After receiving many requests to apprentice special needs teens at his complex, John decided to make that a reality.

John joined forces with Northeast Center for Youth and Families, a nonprofit service agency in Easthampton, MA.  NCYF operates Tri County Schools, a K-12 program for public school students with developmental and behavioral challenges.  Together, the founded TCS Auto Program, which is licensed as a satellite campus of Tri County Schools.   John provided the creative vision and facilities, and NCYF provided the licensed staff, academic support, and administrative facilities. The curriculum is unique to this program and is jointly developed and tailored for each student.

Our program is licensed as a special ed high school for up to 18 students. Our operations are overseen by the Massachusetts Department of Elementary and Secondary Education (DESE).  

Who's the ideal TCS Auto Student?
Our ideal student is 15 or older, and having trouble staying on track in high school.  He or she may have autism, ADHD, or other issues affecting his behavior.  The student may have trouble focusing on class and doing work.  Behavior is probably a problem.

The student might be a candidate for the districts vocational program, but their behavior is too disruptive.  Perhaps they tried a program like that, and got into trouble. 

The student may not want to be in school, and there may be talk of dropping out.  Yet the student wants to grow up, work, and live independently.  The student may talk of a career in the trades, or the military.  They may be thinking of college but not sure if it will work out.  

This is a student for whom traditional school isn’t working.  The student may be 18, and not ready to graduate.  Our ideal student has promise but needs help making the transition from high school to work or college.

Students learn about brakes and suspension at TCS Auto Program (c) J E Robison

What is TCS Auto Program about?

Throughout human history, people learned their future work trades at the sides of experienced masters.  That system has survived as the vocational model in a few public schools but is has largely been replaced by more abstract book learning.  That’s a fine system for some students, but what about those who still learn best by doing?

As an autistic adult, and as a parent of a son on the autism spectrum I have experienced this firsthand.  I myself failed in a traditional high school program, even as I found success working with my hands.  Today we know there are millions of young people like me – kids who fall through the cracks of our current educational system.

Our TCS program returns to an older hands-on way of learning; one that history has shown to be effective for all kinds of people. We combine academics, traditional vocational learning, and life skills and post-high-school transition coaching.  We work with IEP public school students whose behavioral challenges preclude continuation in regular school or participation in a traditional vocational program.  We take students who are on a track to failure and turn them around with positive engagement and participation in a real working community – one that was founded by a former special needs student.

What are you teaching?

We are a unique high school program that focuses on teaching transition and life skills in the context of the automobile trade.  The TCS Auto Program is the only high school program our state Dept of Elementary and Secondary Education has ever licensed in a real working trade complex.

TCS Auto is located within co-founder John Robison’s Springfield Automotive Complex, which is also home to our city’s backup 911 ambulance operations; J E Robison Service (restoration and repair of BMW, Land Rover, Mercedes, Rolls Royce and Bentley); our city’s child safety seat program, MedCare transfer ambulances; Tebaldi Line Right (alignment and undercar service); Mr. Detail (auto detailing); and Tech Auto Service (general auto repair.)

Students receive classroom instruction at the Tri County Campus in Easthampton, and vocational/transition instruction at our auto complex.  Students are exposed to the wide variety of work performed in our complex and welcomed into the various operations. Seniors are also offered paid internships in the complex.  

Students are free to find an area of interest and learn at their own pace under the supervision of our licensed staff.  Areas of study include:
  • Basic auto mechanics
  • Auto cleaning and detailing
  • Vehicle inspection and maintenance
  • Parts department operations
  • Service management
In addition, students learn good work practices, how to stay safe, and how to dress presentably, act responsibly, and present themselves favorably.

What do students leave us with, in terms of credentials?

  • We use outside grants to fund driver education where needed, to help our graduates get driver licenses – essential for most work in Western MA;
  • We use outside grants to fund inspector license training, which allows graduates who choose that program to inspect motor vehicles in Massachusetts;
  • Students receive diplomas from the referring school districts;
  • Students receive safety shoes, uniforms, and tools that they are free to take on graduation.

What benefits have you seen in students?

Once started in the program, our students have shown:
  • Pride in being part of the program
  • Diminished absenteeism
  • Students who were at risk of dropping out don’t
  • Students have a new focus on a brighter future
  • In most cases we see significantly better behavior
  • Students show initiative and responsibility
Our graduates are going on to college and/or work.  

Who can enroll in the program?  

We are licensed by the Massachusetts Department of Elementary and Secondary Education to serve high school students whose IEPs call for out of district placement for behavioral challenges, autism, ADHD, intellectual disability, and other conditions.

Jonathan B  . . . one of our graduates who now works in the complex while attending college (c) J E Robison
Who pays for the program?

We are paid by referring school districts, who may obtain some reimbursement from the state.  We also accept donations of cars and material, which is sold or raffled to finance driver training, tools and clothes for students, and other things the state does not pay for.

Students take pride in working on engines and vehicles that are sold to support the programs they are part of.

As a licensed special ed school that serves the public school network our rates and operations are overseen by DESE.  Our parent school – Tri County of Easthampton – currently has contracts with all school districts in Western Massachusetts.  Rates for this program are the same as other Tri County high school programs.

Are there any expenses for which students or parents are responsible?

All costs are paid by the referring districts, the state, and private grants and donations.  We serve the public schools of Massachusetts, and as such, do not charge tuition or fees to families or students.  

Are we teaching other trades?

Yes, we also have a culinary program running at the main Easthampton campus, and as enrollment rises, we plan to add more trades.

What's the difference between this program and a regular vocational high school?

Our program is licensed as a special ed program.  We're only able to accept students whose IEPs call for out of district placement for challenges we are equipped to support.  This allows us to give much more concentrated assistance to students, to maximize their chances of success.  We have much smaller student to staff ratios than regular public school programs - less than 5:1 in most classes.  

A public vocational high school admits all students.  Our program is restricted to students with special needs. 

Who owns TCS and is it for-profit or non-profit?

TCS Auto Program is not for profit, and as a non profit it does not have an individual owner.  They are governed by a board of directors drawn from educational, business, and mental health professionals in Western Massachusetts.

TCS Auto Program is a part of Tri County Schools, which is itself part of Northeast Center for Youth and Families.  NCYF is a not-for-profit with 501(c)3 status.

Where is the Springfield Auto Complex and TCS Auto Program

We are at 347 Page Boulevard in Springfield, MA, 01104.  

Want to know more?

Call John Robison at 413-785-1665
Email John at robison at robisonservice dot com

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.