Wednesday, December 31, 2014

Have you heard about Neli Latson?

He’s a young man with Autism and Intellectual Disability who has been incarcerated since August 2013 as a result of behavior that results from his disability.  He has been held in solitary confinement for most of that time and is presently at a Virginia state prison. You can learn more about this case on the webpage the Arc of Virginia has dedicated to Neli Latson:

Neli is not a criminal. He does not belong in a jail or a prison.  His tragic situation is the result of events surrounding his initial detention which occurred, ironically, while waiting for the public library to open, and from subsequent mental health crises resulting from his confinement.  As Washington Post columnist Ruth Marcus put it, His journey through Virginia’s criminal justice system began four years ago, when he assaulted and badly injured a police officer who had demanded to know why Latson was sitting outside the public library.

Answer: He was waiting for it to open.
Hint: He was a young black man wearing a hoodie.

“In effect Neli spends 24 hours a day locked in a segregation cell with minimal human contact for the ‘crime’ of being autistic,” his lawyers wrote to Virginia Gov. Terry McAuliffe. “Absent intervention, there is every reason to think he will remain there until the opportunity for effective treatment has been lost.”

All of us, as a community, should take a moment to help him out.  But for the grace of God, any of us could be in the same situation one day. 


Please call, email and Tweet the Virginia Governor and Attorney General, and the prosecutor, Stafford County Commonwealth Attorney Eric Olsen.  For Twitter, include the hashtag #freeneli and the handles of the Governor, Attorney General and prosecutor: @GovernorVA, @AGMarkHerring, @ericolsenforca  The message is simple: Neli deserves treatment, not incarceration.  He is not a criminal. 

You can reach the Governor by phone at 804-786-2211, by email form at this link: or on Twitter at @GovernorVA.

You can reach the Attorney General by email form or on Twitter at  @AGMarkHerring

You can reach the Stafford County prosecutor, Eric Olsen at (540) 658-8780 and on Twitter at @ericolsenforca. 

Best wishes for the new year

John Elder Robison

Saturday, December 20, 2014

High Functioning People Like You Don’t Speak for My Child!

That is a very common and unfortunate objection to essays describing life on the autism spectrum.  I heard (or read) quite a bit of that in response to my recent column in the MIT Technology Review.  The words seemed to come most often from parents who felt their kids have more major challenges than me.  Much has been written about calling people high functioning or low functioning.  With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading to us “high and low functioning people.”  Suggesting that, “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.”  People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago.  I didn’t like it then and I don’t like it now.

Both phrases imply I (and all others like me) are pretty good even though we are the “other;” some lesser class of human.  How would you feel about that, if it were you?

The problem with labels like these is that their meaning is insidious and we don’t always catch on right away.  Autistics like me were called retards in casual conversation by all sorts of people in 1965.  That does not happen anywhere near as much today, but phrases like “high or low functioning” have evolved to mean the same thing.  At their inception I don’t think they had a pejorative meaning.  Retard didn’t start as a pejorative either, for that matter.  But both do now.

I used to use those words and phrases myself, before I understood their meaning.  Now I know better.  I used to smile when I was the butt of jokes too. I smiled because I wanted to fit in and be liked, and the others laughed so I laughed too. Now that I understand, I cringe at those memories. I don't laugh at stuff like that anymore.

In 1965 we also used other names for levels of observed intellectual ability.  Moron or idiot, for example.  Those names are problematic for the same reasons. Those of us who are honored with labels like that feel the sting of being less, no matter what our functioning level.  You may claim that I can’t speak for others but I can say this: I have spoken with thousands of autistic people of all intellectual levels and not one has taken issue with that particular statement. Describing us as “less” always hurts.

But it takes time to realize that.  My dad had what my family an "idiot cousin who tended the pigs," back in Georgia.  That’s how everyone described him, growing up, and I pretty much ignored him because I was told, “he didn’t have any truck with people, just pigs.”  Today we would call Bob a non verbal autistic, and we might even find a way for him to communicate.  Sometimes we look back with shame at the things we said and did long ago, but we didn’t know any better.  Now we do, and rather than dismiss people like Bob we try and understand and engage them. 

That's more important today because society has changed. When my dad was a boy it was possible for a nonverbal person to have a life with farm animals and nature, out in the country, and be safe.  That's not so true now.  What we called "the mountain farm" is now a subdivision outside Chattanooga, TN.

We now know that our functional level changes with time and other factors.  As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70.  It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

In the longer term many autistics grow up to be far more capable in society than they were as children, especially when compared to their same-age peers. My autistic son, for example, did not read till he was 10.  At age 9 he was in the lowest percentile for several developmental milestones. Now, at age 24, he is near the top.  But that does not mean he is not challenged by autism.  He is; just differently than as a boy.  What some called low functioning became something different through natural processes.

I’ve had the same experience. Psychologists say we learn adaptive strategies.  Neurologists think our brain pathways may develop later.  There are various explanations but they all boil down to this: autism causes developmental delay, and we may therefore be developing and improving much later in life than you might expect.  Many of us experience significant functional improvement in our fourth, fifth, and even sixth decades of life.  That would be unusual for neurotyopicals but it’s common for us.

As an alternative to functioning labels, consider describing someone has having particular challenges or not.  I am very verbal.  Other autistics are non-speaking.  A few don’t communicate successfully at all, in ways we understand, though they may still be trying.  Many of us have medical challenges of very different kinds.  To say that I speak and your son does not is not to call him less.  One day he may speak, and you won’t say that anymore.  Or maybe he will never speak.  You never know with this autism.

I often hear that head-banging, biting, and aggressive behavior sets some autistics apart from me.  Why?  I smashed holes in my walls as a kid, with my head. And I bit. When you ask yourself why we would do that, “being autistic,” is not the answer.  The answer is frustration combined with cognitive challenges.  Communicate with those people successfully, respect them, understand and help with their challenges, and most of those behaviors will moderate.  Do I presume to answer for every single case? Of course not, but I’m confident there is a lot of truth in that philosophy. 

The final issue I’d like to talk about is this: In our society, it is the bright and articulate who find voice in the media, in schools, and in workplaces.  They do that because their skill with words causes others to sit up and listen.  When those articulate people express thoughts about the economy or how we run our schools, we do not knock them down by saying, “Those are high-functioning views. People like my son don’t agree!” 

The autism spectrum contains people of every intellectual level.  Why is it that the bright and articulate autistics are attacked for possessing the ability to speak out about our shared autism? It always surprises me that parents attack me for what seems essentially being different.  I'm not their enemy.   I'm not the only verbal autistic person who's felt that sting.  "You're not a real autistic person.  MY son has real autism." 

When I talk about therapies that are needed, I consistently advocate for research that will benefit people whose cognitive challenges seem very different from my own.  I do that because I believe we have a societal duty to help all autistic people, not just some.  That’s what community is about, folks.  Attacking a community’s articulate members when they advocate for the group won’t help their less articulate brothers.  It just hurts everyone.

There is a valid concern that bears mention.  Autism has such a broad range of affect that your experience as an autistic person may have little or nothing in common with my own.  So I may not know much about your life from the mere fact that we are both autistic.  If I choose to speak up as an autistic person, I feel I have a duty to try and understand the full breadth of autism’s affect so that I can describe our shared spectrum fairly.  While “my spot on the spectrum” is obviously the one I know best, I recognize a duty to “speak my best for all spots” when I raise my voice in public.   I believe this is a general moral obligation that’s shared by anyone who chooses to speak for a common cause.

In closing I'd also like to point out that I have never claimed to speak for you, your child, or any other specific individual.  My words are my own; grounded in my life experience.  The idea that I have a duty to advocate for the breadth of the autism community is not a presumption that I speak for specific individuals.  It's simply a recognition that my words may be broadly interpreted as an "autistic voice" and I should try and make those words helpful and not harmful for autistics as a group.

Obviously the acquisition and dissemination of understanding is an ever-evolving process.  I speak out the best I can today, and when I learn more tomorrow, I will speak then with the benefit of that new knowledge.  That’s all any of us can do.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

Thursday, December 11, 2014

What’s MSSNG in #Autism?

Me, at age 2. Even then, I was #notmssng (c) John Elder Robison

Yesterday a new hashtag campaign appeared in my Twitter feed – #MSSNG. It seemed to refer to autism, and a new research project. I had an immediate reaction, based on my interpretation of the letters in the context of the autism discussion - I thought, Missing?  Certainly not.  We may be gifted or we may be disabled but we are definitely here.  And we are complete humans.   I posted that right away, and it launched a flurry of discussion.

My response seems to mirror the prevailing sentiment with respect to this campaign - autistic people are not missing, and nothing is missing from us.  In fact, a counter hashtag had appeared moments after I read it - #NOTMSSNG.

I wondered what the campaign was about, so I went looking. It’s an initiative by Autism Speaks to sequence the genomes of 10,000 individuals touched by autism.  In my opinion, that is a worthwhile thing to do.  I’ve written before about the value of genetic research.  But it is far from my #1 priority for the autism community. More on the why of that later.

Their choice of a name turned mssng from an announcement of a science initiative to a public relations debacle.  I think it’s seriously misguided on several fronts.

First – the community side

As I said in the beginning, autistic people are not missing.  We have always been here, and we always will. Yet I and many other autistics live with the knowledge that we occupy a world where autism is widely perceived as a disease or defect. I can’t speak for other autistics, but I don’t much care to be seen as diseased or defective. Nor do I like being seen as “missing pieces,” which the name mssng implied.

To say that is not to deny the very real ways autism disables us.  Rather, it’s a simple statement of fact.  Autism is a neurological difference, not a sickness.  As such, it’s here for a reason. Who are we, to second-guess that?  Remediate its disability – sure!  Wipe it from the world – that’s crazy talk, and societal suicide.

I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.

It’s not a name I’d have chosen.  I don’t know who did choose it but I’d bet they were not autistic.

An organization run by autistic people would not have made this mistake.  An organization run by non-autistics, autism parents, and autism grandparents DID make this mistake. Or perhaps to them, it’s not a mistake.  It’s just “Some autism parents speaking.”  But that is not what their organization’s name implies.

If “Autism truly Speaks” it by definition does so through autistics. That’s the only way it could speak.
“Autism Observed” is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.

Those are very different things, and we should get our terminology right.

Second - the science side. 

The idea of researching autism at its most basic makes sense.  But genetic research is fraught with ethical challenges.  However, that is not its biggest problem here and now.

The biggest problem here and now is very simple:  Genetic research is an extremely long term game. The timeline to start a study like this, make a discovery, translate that to a possible treatment, and then get that treatment tested and FDA approved is 10 years at a minimum, and more likely 20 years.

So this effort won’t help any of the autistic children today.  Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse.

What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.

We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up.

If I were running an autistic-centered autism advocacy organization, I’d be making those things my #1 and #2 priorities.  I wouldn’t be talking genetics until I’d made some really solid progress on my main objectives.  Once I showed the community what I was doing for them today, I’d talk a little about the long term game. 

And most of all, I’d be looking around me, at autistic people leading the organization. 

I’m a big believer in science, and I absolutely understand that genetics may one day solve the riddle of why some people have spontaneous genetic mutations that lead to severe intellectual disability.  It’s led to some important discoveries and it will surely be key to more. But how many individuals who live with intellectual disability today will be helped by that?  How many autistic job seekers will get a job, thanks to that work?  How many autistic kids who wander dangerously will suddenly become safe?  How many autistics that suffer from anxiety or gastric distress will suddenly relax in comfort? Those are a few of the very real issues autistic people are actually thinking about now, and genetics isn’t one of the answers on tomorrow’s table.

Genetics is important.  But it is not job #1 for this community. Once again, with this effort, we are spending money in the wrong places.  We should not be trying to “solve the autism riddle.”  We should not be “looking for missing pieces of the autism puzzle.”  We should be Helping Autistic People – Right Now.  When we consider a piece of research - and much is needed - we should never lose sight of the fact that people need help today, not in ten years.  Basic science is good, but applied engineering gets the roads and dams built. That is a very apt analogy for our situation.

The misjudgments about priorities and the marketing mis-steps have overshadowed the science for now.  That's unfortunate, because the concept behind this latest effort seems to have a lot of merit.  And I'm sure it could have been enthusiastically embraced, had it been presented in the right context, with autistic oversight, and as part of a larger effort whose main thrust was directed more toward deliverable benefits.

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

That is my opinion, and my hope and wish for this holiday season.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

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