John Elder Robison's Blog, page 8

TCS Auto Program in the Springfield Automotive Complex, Springfield, MA (c) J E RobisonWe 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 which traditional school isn’t working.  The student may be 18, and not ready to graduate.  Our ideal student has promise but needs helping making the transition from high school to work or college.
Students lear 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 carious 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 mechanicsAuto cleaning and detailingVehicle inspection and maintenanceParts operationService 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 find driver education where needed, to help our graduates get driver licenses – essential for most work in Western MA;We use outside grants to find 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 programDiminished absenteeismStudents who were at risk of dropping out don’tStudents have a new focus on a brighter futureIn most cases we see significantly better behaviorStudents show initiative and responsibility
Our graduates are going on to college and 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 RobisonWho 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.  We 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 413-785-1665Email John at robison at robisonservice dot com
(c) 2007-2011 John Elder Robison

This afternoon a group of MIT and Mass General researchers released a study called “Read the paper here
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.(c) 2007-2011 John Elder Robison

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.(c) 2007-2011 John Elder Robison

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

(c) 2007-2011 John Elder Robison

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 . . .(c) 2007-2011 John Elder Robison

Midnight, in the graveyard at Bruton Parish Church in Virginia

This morning I awoke to the news that comedian Robin Williams had killed himself, at 63.  He’s the latest of a long line of creative people to take his own life.   Every time a performer or artist kills himself I ask if this is an unavoidable hazard of the arts, or if something might be done about it.
News sources say Williams was “wrestling with depression” when he did himself in.  I myself have wrestled with depression, as have many people around me.  The question of why some of us choose suicide, successfully and without warning, is one that has yet to be answered.
Most of the people who commit suicide don’t announce their intentions.  Some research suggests they may not even have such intentions until the fateful moment.  I don’t have any wisdom to offer in that regard; it’s perhaps one of those things where the only ones who know the answers are dead.
I know I’m a part of two communities at risk.  The suicide rate among people with autism is shockingly high – near 2%  http://jerobison.blogspot.com/2014/05/what-happens-to-autistic-people-when-we.html
Some researchers speculate that autism isolates us, and isolation is painful.  Autistic people are often subject to bullying, marginalization, and other painful things.  I can understand how some of us are overwhelmed by that mix.
It's easy to start feeling we have nothing to look forward too except more psychic pain, and if we feel that way suicide may seem like a good choice.  I do not feel that way right now, but I have been there before, and I can't think of anything that magically "snapped me out of it.  From my experience, I can see how this state of mind would become unsustainable after a certain period of time.  Yet it's a quiet despair, and I don't think most people noticed when I was feeling that way.

That's the danger of those kind of feelings - no one knows. We don't show much outward sign, and if we don't get better on our own . . .

When I was alone as a young adult I used to feel terrible pain and despair, almost every night.  I'm all too aware that those feelings can return any time, should something bad enough happen.  We're a vulnerable population in that respect.  Some people say sadness strengthens and shapes us; others say it kills us.  I guess it's situational.

Another study – this one dating from 1999 – found a similarly high rate among writers, sculptors, actors and other artists:  http://www.amsciepub.com/doi/abs/10.2466/pr0.1999.84.1.291?journalCode=pr0
Are artists susceptible because we are sensitive to perceived criticism?  Are artists isolated by difference?  I don’t know.  I know many writers who are absolutely devastated by attacks on their work.  I’ve felt that myself, with some of the one-star reviews on Amazon.  Does that lead to suicide?  I don’t think anyone knows.

I know many writers and artists who seem to experience greater highs and lows than the average person.  Maybe the highs bring us our gifts, but the lows can take us out.  That's another unanswered question.

As a person who is often out there before the public, I know well the pressure to put on a happy face even when I'm crying inside.  That puts a tremendous strain on the psyche, and it sometimes hammers you hard when you're alone after the show.  When people look to you with certain expectations - whether you're a comedian like Robin, or a singer, or a speaker on disability - you are always feeling you must live up to an imaginary standard and it can be very hard.  At the same time, you offer your inner thoughts - even if couched as comedy - and it stings when they're rejected.  Is too much of that the straw that breaks the camel's back?  Those of us who are living may never learn that particular answer.

I don't feel sad today - I am not writing from a place of despair - but I am well familiar with how that feels.  It's heartbreaking to read stories like this one, and realize it could be any of us, tomorrow, with a few little disasters to put us over the edge.
The suicide rate for people with severe psychiatric disorders – mania, psychosis, schizophrenia, major depression – is even higher – near 10%.  The 1999 study draws that comparison.   I think of my parents, locked in the wards of the Northampton State Hospital 40 years ago. I remember seeing them among the other inmates and I understand.  They were a desert of lost people.
Is there anything we might do to reduce rates of suicide in these groups?  I wasn't personally acquainted with Robin Williams, but the news of his death reminds me how sad it is that we can be so silently alone and in pain - even when we are loved by millions as he was.  And our sadness can be such a crushing burden that we take our own lives rather than carry on, even as observers of our lives imagine things to be so good.  And it can happy to any of us - rich or poor, famous or unknown.

I’d be interested in your thoughts.


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 co-founder of the TCS Auto Program high school in Springfield, MA and Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, VA.(c) 2007-2011 John Elder Robison

When the autism awareness movement began, it was led by parents advocating for their children.  Parents founded most of the original advocacy organizations, and parents fought for services.  Many times they worked tirelessly on behalf of children  who were ill equipped to speak for themselves. 
Many things have changed in the past decade.  We now recognize a much broader spectrum.  Many of the kids who were the original focus of parental advocacy are now autistic adults.  Technology and emergent therapies are helping them and others at all points on the spectrum communicate effectively and broadly. 
Between growing up, being recognized in adulthood, and developing more ability to communicate effectively, members of our autism community have become far more able to speak for ourselves.  Given that reality, I believe it’s time for a shift of balance in some of the organizations and groups involved with autism.
Autistic advocates are already shifting the discussion from awareness to acceptance and support, but more is needed.  
Specifically, it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.  Some individuals will still want such assistance and that's fine for those individuals but – just as in other communities of adults – the majority of us can and should communicate for ourselves.
Speaking for ourselves is an essential step to independent adulthood.  It's not a dismissal of parents; it's the same thing every child does as part of growing up.  Some autistics do this at the "typical" time; others are a few years later.  Some don't become independent speakers until well into adulthood and a few never speak for themselves.

Wherever a particular person falls on the independent speaking spectrum, the previous paragraph does not imply parents and professionals don’t have valuable input to offer – they do.  Rather, it’s a recognition that a happy and free adult people must determine their own destinies whenever possible. with advice - not oversight - from others.
Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisors, not the leaders.
Anyone who reads the news knows how the recognized prevalence of autism has risen steadily this past decade.  At this point, our numbers make us a significant subgroup of the population.  In America – for example - we outnumber both Jewish and Native Americans by a substantial amount.  It’s reasonable for us to expect the same recognition, rights, and acceptance as other population groups.
It’s also time to recognize that we are also more than a group of “people with a disease.”  The evidence shows we have always been here, and we always will.  That does not discount the idea that some autism stems from environmental toxins or other preventable causes.  Rather, it reflects the emergent realization that there are multiple autism(s) and one form seems to be a stable part of humanity; unrelated to disease or injury.  As much as we may seek to prevent neurological injuries and correct those that occur, we must also respect those of us who are simply “born different.”  And of course there is the issue of perspective – to me, it may be you that’s different!  We may each see that in each other and we both deserve respect and acceptance.
That means facing the fact we have our challenges, but we have our gifts too. The balance varies from person to person, and for each of us, it may change over our lifespan. Like any community all our facets should be recognized and respected.  We say autism is a way of being . . . who should young autistic people learn this from if not autistic adults?  That’s why it’s so important for us to build community and dialogue.
Most of us are aware of the breadth of our community with respect to how autism affects us, and what mix we may have of gift and disability traits.  There are differences in our expectations too, with some of us wanting to be left alone, some wanting acceptance, some wanting assistance and some calling for a cure.
The opposite ends of that spectrum are to some extent mutually exclusive on a population level but we can hopefully accept that range of difference individually.  It all comes down to this:  Whatever we believe, it’s our community, not our parents or our teachers or anyone else’s.  It’s up to the autistic adults to take charge and shape our destiny going forward.
I believe it’s our right, responsibility and indeed obligation to speak up for ourselves.  If we believe our community contains members who cannot speak for themselves we have a duty to do our best to speak fairly for them too. 
We have a broad range of wants and needs.  Who better to articulate those needs than those of us who are affected?  We express outrage when outsiders broadly characterize autistic people as “suffering from autism,” but the fact is, every human suffers from something sometime.  When we suffer, we should speak up.  But we should also speak up for our joys, our hopes, and our dreams, because speaking up is the first step in making those things real, just as it’s a first step in making suffering go away.
By saying this I am not presuming to speak for any specific individual, nor am I suggesting autistic adults should bull their way in to try and speak for individuals who are unable to speak for themselves.  Any community will contain members whose guardians speak on their behalf, but they are in the minority.  In the autism community, that shift will represent a reversal.
Autism – by definition - presents us with communication challenges but most of us can and do communicate by the time we reach adulthood.  It’s time for us to use that great human gift, for all our sakes.
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.

(c) 2007-2011 John Elder Robison

Autistic adults are crying foul at a recent Washington Post article that speculates on a connection between serial killings, mass murder, autism, and head injuries. The premise of the article is that those things may be connected in more than a coincidental way, based on a study of mass killers in various databases.  Neurodiversity advocates are rightfully concerned that the story will turn the public against autistic people for no good reason.
I say, Shame on the Washington Post for running such an inflammatory headline to promote such a poorly thought through article.
The ill-considered piece is based on a newly published study – Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers, by Allely, Minnis, Thompson, et al.  Three of the authors are psychologists at the University of Glasgow, one is at the University of Gothenberg, and one is at the Center for Health Science in Inverness, Scotland. 
While the original paper has some interesting findings, the conclusions they reach, and the way they are presented – in my opinion – verge on irresponsible.  There is an overwhelming body of evidence that autistic people end up victimized far more often that we victimize others.  There’s no prior association between being autistic and premeditated aggressive violence. Articles like the one in the Post lead to further exclusion and victimization from a fearful uninformed public.
We saw that in the aftermath of the Newtown killings with the talk about whether Adam Lanza was on the autism spectrum, and by implication, whether autism was a factor in his crimes.  Young people with autism were bullied and isolated by irrational readers who were stirred up by the media frenzy.
The whole idea of this latest study is flawed.  The issue is simple:  correlation does not imply causation.  Researchers forget this to their detriment as they are led to wildly wrong conclusions when two data sets seem to fit together.  I’ll give you an example.  Right now, if we compare data from the US Census and the USDA for the years 2000-2009 we find a near perfect correlation (.993) between the divorce rate in Maine and the per capita consumption of margarine. 
Who knew margarine consumption predicted divorce with such accuracy?  It (probably) doesn’t.  But an ignorant person, looking at the near-perfect fit, could easily be led to that conclusion if he lacked the common sense to see through it.
The problem with the Postarticle is that common sense isn’t common, the author does not explain this, and the correlations in the article are not as obviously spurious as margarine consumption and divorce.
Here’s what they claim: Of 239 killers, the authors concede that 133 showed no evidence of autism or brain injury.  But then comes the shocker:  67 (or 28%) are described as having possible, probable, or definite autism.  That makes autistic people sound pretty scary, doesn’t it?
It does not make autistic people scary to me, because I’m informed, and I know the statistic is ridiculous.  But people fear what they don’t know, and there is a lot of ignorance about autism.   The group of serial killers and mass murderers had other common traits, too, but the authors did not see fit to mention them in the same light.  For example:·      Almost all serial killers and mass murderers are male.  Should we be scared of males just because most murderers are male?  That’s actually a pretty well-known fact but males remain pretty acceptable in most societies;·      A majority of serial killers and mass murderers are Caucasian.  Caucasians are welcome most places too – at least in the United States and Canada;·      Of those who are not Caucasian a majority are the predominant race of the land where they killed.  “They eat their own,” is a common proverb, and like most proverbs, there’s an element of truth in it;·      In America, a majority of serial killers and mass murderers came from middle class or affluent backgrounds.  Few came from poor backgrounds.  That’s a surprise to many but it’s true;·      In America, the vast majority of serial killers and mass murderers employ both automobiles and firearms in the commission of their crimes.  Yet there is very little regulation over the ownership or use of either in most of the United States;·      A majority of serial killers targeted victims who were physically weaker than themselves – principally women and children.  With all the talk of bullying today that comes as no surprise, but it’s not clear how you’d use that insight to avoid a serial killer;·      Many serial killers target victims who belong to groups scorned or marginalized by the society in which the killer lives.  That too is not surprising to anyone reading the news.  It’s dangerous to work as a hooker or a drug dealer.  If that’s the career path you choose the risk of death at the hands of serial killers is just one of many hazards.
None of the associations above are worrisome, because they are easily understood and evaluated by a layperson.  Yet every one of them is a stronger match than what the study’s authors claim for autism.
That takes me to the next issue with this study . . . their notion of “possible, probable, or definite autism.”  Let’s look first at the killers who really have autism diagnoses in the studied group.  The authors only identified six diagnosed autistic people.  With a total population of 239 killers – mostly male – the latest autism prevalence statistics suggest autism is about as common in this group as it is in the general population.
Taking that a step further, we could say that the diagnosed prevalence does not suggest autism per se is a factor in whether someone becomes a serial killer or not. There are autistic serial killers, blue-eyed serial killers, and brown-haired serial killers, in similar numbers as will be found in any other human population. Such observations – while true – don’t really tell us anything meaningful about why someone becomes a serial killer. They are just unrelated data points, like the correlation between margarine consumption and divorce.
If we had a theory for why autism, brown hair, or blue eyes might make someone into a serial killer, things would be different.  But there is no such theory, and in the absence of one, it is highly inappropriate to make such a suggestion when it applies to an already-vulnerable population.
Next, let’s look at those “possible or probable” autistic killers.  The authors of the paper described in the Post called a killer “possible or probable autistic” on the basis of Internet speculation, speculation from observers in jail, or speculation based on descriptions of the individuals. 
Armchair diagnosis like that may make for fun conversation, but it has no medical or psychological validity.  It’s speculation, pure and simple.  It wouldn’t be allowed in court and it should not have been allowed here.  The essential problem with speculation in the Aggression and Violent Behavior article is that most of the observed traits the authors associated with autism can also be associated with psychopathy and sociopathy, and I suggest those are more likely explanations given the demonstrated behavior of the individuals.

This study would have had a lot more validity if they had taken their sample of 239 killers and asked, "What psychological, neurological, or psychosocial issues can we definitely attribute to each killer?"  That would have produced a much more nuanced and complex result, but it would have been a result with real meaning.  The present study - looking only at autism and head injury - and its possible-probable-definite language, is hogwash.
So, in conclusion, I will just repeat - There are no studies showing a propensity for aggressive violence on the part of autistic people.  This most recent paper – which has gathered a lot of headlines but little professional praise – does not make that case either. 

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.(c) 2007-2011 John Elder Robison

I've been posting regular updates from the 2014 IMFAR autism science conference.  At 7:15 this morning I'll be discussing transition to adulthood, and how we might reshape our education system to improve our rate of success.



As the co-founder of a unique vocational program for teens with differences, and as Neurodiversity Scholar in Residence at William and Mary these are questions I think about a lot.  One of the realizations I've come to is that we inherited a concept of learning where the young learn their trades at the side of those who are older and wiser in a system that we eventually came to call Vocational Education.  This system served humanity for as long as we've been around, and it was the way we taught every single trade from doctoring to sheepherding; from preaching to policing.  Then we threw it away and embraced the (false) idea that anyone could be anything, by learning from books and going to college.

But it's not college that's the problem.  It's the way we teach it.

Here's a TEDx talk that lays out my views in 18 minutes.  Take a look, and let me know what you think.  If you prefer to read the talk in stead, I've posted a transcript here.

Let's get a discussion going . . .

https://www.youtube.com/watch?v=RFkQifd-D1U


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.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.(c) 2007-2011 John Elder Robison

What happens to autistic people when we get old?


This morning I had the privilege of listening to several perspectives on aging at IMFAR 2014.  Three presentations covered distinctly different groups of autistic adults.  The findings were very different, and I found myself leaving the presentations with more questions than when I arrived.  Some say that’s a hallmark of good research, while others ask for their money back.  I just nodded, because they let me in free. 
Here's a bit of what I heard . . .
Dr. Joe Piven from the University of North Carolina looked at the quality of life for twenty autistic individuals over 50.  The guys in his study had traditional DSM III autism, meaning their issues are rather more debilitating many who are diagnosed today.  Most had verbal, functional, and intellectual challenges.  11 had no school; 9 had a high school education. Some lived independently; others were in some supported living environment.  They had a mean age of 56.
The first point he made is that we have no tools to survey this population.  The individuals themselves had limited ability to respond to surveys.  Most were in environments where their caregivers had not known them more than a few years.   Gathering detailed information was very difficult, and the study size was limited because finding the people was an even greater challenge.
The intellectually disabled have always been an invisible part of our society, and when you add autism and aging the situation only gets worse.  I should give all of us pause for thought.
17 of the 20 individuals studied appeared to be aged well beyond their years.  55-year olds looked 75.  Was that a result of autism, intellectual disability, or living situation?  The scientists don’t know, but several researchers who have worked with older adults with intellectual challenges say premature aging is common.
It was not possible to get good medical histories for all participants, but observations were made about their present state of health for everyone.  One of the things that struck the researchers was how common Parkinson-like tremors were.
Parkinson’s affects 1 in 1000 of the general population at age 60.  More than 30% of this group showed mild symptoms that might be attributable to Parkinson’s, and several were actually referred for medical examination.
Why would that be?  They don’t know.  It didn’t seem to be an artifact of serious intellectual disability, because the Parkinson’s-like rigidity and gait issues mostly showed up in the folks whose IQs were over 50.
Those troubling findings certainly merit further study.  I hope we hear more at our next meeting.
Hilde Geurts came from Amsterdam to describe a self-report exploration of quality of life in autistic adults on her side of the Atlantic.
Her sample included 486 autistic people, 19-79 years of age, whose average IQ was 114 – a very different group of autistic adults from those in the first study.  She asked respondents to rate various quality of life factors in their own words, and in some cases she asked friends or partners to rate the same things.
One of the first things she explored was the idea of “growing out of autism.”  That didn’t happen.  Her respondents said that autism symptoms decreased but did not disappear, as the respondents got older.  Almost all respondents said the challenges they faced as kids remained even when diminished.
When asked about satisfaction with relationships, living situation, work, and other things, autistics reported a consistently lower quality of life than the non-autistic controls.  Interestingly, when friends or partners observed and rate quality of life, those reports were consistently lower than the quality of life the autistic people themselves described.
I guess you could say we’re happier that observers judge us to be.  Maybe ignorance is bliss after all.
I’ve always thought my life got better as I got older, but she didn’t find an increase in reported happiness with age.  I was surprised at that.
Here’s an interesting finding:  autistic people reported more “cognitive fails” – like forgetting why you walked into the kitchen – that neurotypicals, but that didn’t get worse with age.  It's sure gotten worse for me!
Finally, we heard more from Dr. Lisa Croen of Kaiser Permanente in California.  She told us more about her adult study, which looked at 2,100 autistic adults age 18-60 who were enrolled in the Kaiser network between 2008-2012.  I wrote about her study in an earlier blog, but in this presentation she added some key data:Almost 40% of the autistic population was treated for anxiety versus 17% in the general population.The numbers for depression were a close second – just a couple percentage points less.Almost 10% of the autistic population was also treated for schizophrenia or bipolar versus less than 2% for control population.Suicide attempts were the most troubling – near 2%.  Can you believe almost one in 50 autistic adults attempted suicide at least once in that five year period?  That is shocking.Epilepsy was much more common among autistic adults – affecting near 10% of the group.   Hearing impairment was twice as common.  Vision problems were three times more common.  Cardiovascular and metabolic issues were more common, but the differences were less dramatic.
Autoimmune disorders are a big deal with children on the spectrum.  Interestingly, they were not a big issue for adult males on the spectrum, but they remained a problem for women.
Surprisingly, the risk of cancer was about the same for autistic and neurotypicals – 3%
For every finding that I report, you can ask I, why?  In every case the answer is the same – we don’t know.  We can speculate that autistic people are less aware, or take less care of ourselves.  Maybe that’s some of it.  It's no surprise that a condition that leads to social isolation would also lead to anxiety and depression. We can offer up any number of other reasons.  But the fact is, it’s all speculation for now.

More study is needed.  If these studies show one thing clearly it is that adult autism needs to be studied in much greater depth, right now.  All of us are getting older, and we deserve some answers.


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 co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.

Watch my TEDx talk on Organic Education for more thoughts . . . (c) 2007-2011 John Elder Robison