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Neurotribes – Steve Silberman’s Book on the History of Autism

Steve Silberman’s book Neurotribes is a must-read that raises some interesting questions about the history of the autism diagnosis.  Part of what he writes will be familiar if you’ve read the original Asperger and Kanner papers, but even then he’s found some striking new twists that were buried in the archives, and they are sure to stimulate good discussion.

Last month I had the opportunity to read an advance copy, and this week reviews of his book appeared in the NY Times and Atlantic.  The Atlantic article in particular touched on what I felt was a key part of the story Steve uncovered and I’d like to expand a bit on it here . . .

I’ve always been curious about the striking coincidence in how autism made its debut in the medical literature.  In 1943, Dr. Leo Kanner published a paper in America in that described a previously-unrecognized condition he called “autistic disturbances.”  A year later, in 1944, Dr. Hans Asperger published a paper in German that described the same thing – autistic behavior.  How did two clinicians an ocean apart come to recognize the same previously-unseen condition, and quantify it using many of the same terms?

This mystery was deepened by the fact that Kanner seldom made any reference to Asperger or his work, and there was no known collaboration between the two men.  Or so it appeared.

In the recent Atlantic article, Silberman describes finding the hidden connection between Asperger and Kanner. It turns out to be a third man, Dr. George Frankl.  In the 1930s Frankl was Asperger’s diagnostician at his clinic in Vienna.  Frankl was there for all the diagnoses described in Asperger’s later paper, but he left Austria when the persecution of Jews began.

By 1938, thanks to Kanner’s sponsorship, Frankl had found a new home at Kanner’s clinic at Hopkins, where he examined Donald Triplett – now celebrated as “autism case #1.”  Interestingly, when you read the accounts Kanner published about Triplett there is very little first-person language.  As far as I know, no one has considered the reasons for that until now.  What if Kanner wrote in the third person because Frankl did the actual evaluation?

Maybe we’ve been barking up the wrong tree all these years, debating whether Kanner or Asperger should rightly be the “father of autism.”  Maybe the real father – if there is such a thing – is Dr. George Frankl and Kanner and Asperger were both bosses who facilitated things and took the credit for their subordinate’s work.

Silberman does not suggest that, and I concede it’s just a guess.  But the scenario is all too familiar to postdocs and grad students of today!

To quote the Atlantic article:

It is clear now that Kanner and Asperger’s discoveries were neither independent nor simultaneous.

That’s not all . . . One tragedy that Silberman describes at length is how Asperger – in his original writings – described family clusters, regression, and the full breadth of exceptionality and disability that makes up the autism spectrum as we know it today.  Yet the descriptions were not translated from the German for 40 years, and even then they were not widely circulated, so the true breadth of autism remained unrecognized until its rediscovery in the past decade.

The result – countless people at the more verbal end of the spectrum – like me, my son, and his mother – were overlooked and written off as lazy or stupid, when in fact we could have received life-changing interventions and understanding if Dr. Asperger’s insights had been widely known.

In another review of Silberman’s book a writer asked where the 50 and 60 year old autistic adults are.  Putting aside the fact that I am one, and I am highly visible, Silberman talks about that question in his narrative. Dr. Asperger seemed to believe his charges belonged in the community, while Dr. Kanner seemed to believe they belonged away from the parents in institutions.

I say “seemed to” because that is the impression I formed from reading the original words of both men, and it seems like Steve Silberman drew a similar conclusion.

That said, I did not need a book to find older adults with more severe autistic disability.  Dr. Kanner referred many patients to the Deveraux group homes, and I have had the privilege of meeting some of them in modern times as I’ve spoken at Devereaux events and facilities. 

I’ve written before about the sensitivity and compassion I saw extended toward older Jewish adults with major cognitive challenges at the Brooklyn Women’s League homes.   I was very moved by the environment I saw there.  If you are looking for a model for compassionate care and inclusion for people with cognitive challenges (autism and more) look no further than Brooklyn.  And know there are other places like that around the USA.

I can’t imagine anyone could visit facilities like those and wonder where the more challenged adults reside.  They are everywhere, if you know where to look.  And people at my end of the spectrum are everywhere too.  We’re every bit as common as Dr. Asperger suspected, and every bit as diverse.    


Later in the book, Steve writes about the emergence of the neurodiversity concept, and the reality that the autistic children of the past have grown up and begin asserting their (our) rights. Autism advocacy started as a parent’s crusade on behalf of disabled children, but it’s morphing to a movement where autistic adults push for acceptance and accommodation in addition to assistance and services.  We are finally recognizing that the autism spectrum encompasses more than the most severely impacted people that were diagnosed in the 1980s.  

You’d think the puzzle would look simpler but these insights make it even more complex, from my perspective.  

Neurotribes is a book that will make you rethink your views of this autism spectrum and how it all came to be.  Give it a read.

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.

(c) 2007-2011 John Elder Robison

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The Challenges of Neurodiversity in Colleges

I’m very proud of William & Mary’s neurodiversity initiative.  I’m even prouder to see other schools following our lead.  Making college campuses more accepting of the neurodiverse is an important step toward making a more ND-friendly world. 



It’s time for neurodiverse faculty to come out, and stand as role models for students and staff.  Everyone knows how autism, ADHD, dyslexia and other neurodiverse conditions disable us as children. What we need to balance that are successful adults who attribute their achievements in part to neurodiversity.

In doing so, we demonstrate that there is a spectrum for all the neurodiverse conditions.  Some of us are more gifted; others are more disabled. In particular, many of us follow a pattern where we are less disabled the older we get as we learn to adapt to society and use our strengths to offset our weaknesses.  

Neurodiverse folks who are enrolled or employed in colleges may be the least disabled of our community, or we may just be the most determined. Or maybe we’re just lucky or privileged.  Either way, we should be standing as role models – particularly for younger people and parents – to show what’s possible.  That’s the best antidote to talk like “He’s autistic; he’ll never go to college.”  While its true that profound disability will leave some of us requiring substantial supports and residential care even as adults, most of us can grow up to live independently and we have great contributions to make.

But many societal hurdles stand in our way, and it’s up to this generation to knock them down. We also have medical and psychological challenges, and it’s up to us to lead the effort to develop the therapies and treatments we need.  Who better than us to articulate our needs and steer the needed research?

Unfortunately, it’s not so easy to get college staffers to come out, as this letter demonstrates:

Dear Mr. Robison –  As an Adjunct Instructor at the ____________, I’ve had the unfortunate opportunity to witness instructors & administrators demonstrate bias against autistic students. I need advice. I want to speak with the Dean of Academics about this institutional problem. However, I’m concerned that I may not be invited back to teach.  Do you have any experience with this sort of challenge? 

How can we expect faculty to announce their own neurodiversity when they see discrimination against neurodiverse people?  I would not have fear about speaking out at William & Mary, because neurodiversity advocacy is my role. But even here at this college, with a provost who’s a vocal advocate of our mission, faculty tell me they are afraid to come out, as in this exchange:

“Even with the neurodiversity initiative, and the talk about neurodiversity being good, I’m still afraid coming out could jeopardize my promotion from assistant professor.  I want to help you but I have to look out for my career and family.”

What’s the answer to this dilemma?  I believe it comes down to courage and passion.  We must be brave enough to announce our neurodiversity to the world, knowing some will embrace us but others will discriminate against us.  We must speak up even knowing there may be a personal cost before there is a collective gain.  And that’s where passion comes in – we must believe in our cause so much that we push through the negative personal consequences in pursuit of a greater goal for all.

On college campuses, we must recognize that there are barriers to both students and staff coming out, and we should encourage both. 

What are some thoughts for bringing this about?

John Elder Robison
All words and images (c) 2015 John Elder Robison

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.

(c) 2007-2011 John Elder Robison

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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.
(c) 2007-2011 John Elder Robison

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