Philanthropy in Autism – A New Direction is Needed

One of the things that’s seldom mentioned is the role of philanthropy in autism.  By directing their donations, private philanthropists have significantly shaped the direction of both autism research and the public image of autism.

In 1977, Nancy Lurie Marks found nowhere to turn when she looked for help for an autistic family member. She would later write, “Autism was a condition which received little public attention and attracted scant interest or funding in the scientific, medical and educational arenas. [My] vision and hope . . . was to undertake a long-term commitment to gain knowledge about autism; to help individuals and families with autism; to bring autism openly into the public eye; and to encourage the free exchange of information about autism.”

Mrs. Marks would go on to donate millions to researchers at Harvard’s teaching hospitals; at Yale, and at other schools.  She would also support residential and educational programs for people with significant autistic challenges.

 In 1994 Jim and Marilyn Simons established the Simons Foundation to support research into science, health, and education.  In 2007 the foundation announced its autism research initiative.  Today Simons SFARI is the largest private funder of autism research in the world.  Like Mrs. Marks, the Simons family was initially drawn to autism research by experience with autistic family members.  

In 2005, Bob and Suzanne Wright founded Autism Speaks to pursue a cure for their autistic grandchild, Christian.  The Marks and Simons Foundations were self-funded, and pursued their mission quietly.  From the beginning, Autism Speaks was different.  They raised money from donors, and they spent a great deal of that money on marketing and publicity, most of which portrayed autism as a scourge and public health crisis.

By 2010 it would be fair to say that Autism Speaks dominated the public discussion of autism in America, even as the Simons and Marks foundations quietly directed major research initiatives. 

One thing all three of those groups have in common is this:  Their founders saw autism through the lens of family members with significant degrees of disability.  They held differing opinions on why their family members were autistic, but they agreed that autism was a serious disability that had been ignored for too long by the medical community.  All three organizations viewed autism as primarily a medical problem.

That viewpoint was consistent with the views of leading psychiatrists and physicians.  At the time autism was said to be crippling, and untreatable.  In their own way, those three families resolved to change that. Their viewpoint had evolved from the writings of Leo Kanner, the Hopkins psychiatrist who described autism to Americans in 1943.  Kanner and the doctors who followed him saw autism as a rare and debilitating condition.

Consequently, the research pursued by those three foundations was aimed at finding the causes of autism – be they genetic, biological, or environmental.  The goal was nothing less than total cure.

Autism Speaks reinforced the public’s perception of autism as a disease to be cured by their publicity efforts.  Most people were completely unaware of autism before Autism Speaks came on the scene, so their story line quickly became the one the public accepted. 

The founders of Autism Speaks chose a divergent path when they seized upon the idea that vaccines were the likely cause of autism.  While Lurie Marks and Simons poured millions into basic understanding, Autism Speaks put similar amounts of money into vaccine studies, which proved nonproductive.

Meanwhile the definition of autism shifted, thanks in large part to ongoing research efforts.  Another thing that shifted the description of autism was the rediscovery of the work of Dr. Hans Asperger, who had actually formulated a description of autism in 1938 – well before Kanner. His work was done in Austria and English-language awareness of it was lost for many decades after the Second World War.  In Asperger’s view autism was quite a bit more common, and he recognized a part of the population that was touched by autistic traits without being totally disabled.  In fact, Asperger even remarked that a touch of autism might be essential for creative genius. 

In the 1990s Asperger Syndrome was added to both the ICD and the DSM as a form of autism, and clinicians began to recognize large numbers of verbal and less-obviously impaired people as being on the autism spectrum.  By 2007, as Marks, Simons, and Autism Speaks were getting established, some of those newly diagnosed people were growing to adulthood and showing the world that Asperger was right – some autistic people were extraordinarily disabled, but others were exceptionally gifted.

Over the next few years, studies like Brugha would show that autism has existed unseen with a steady prevalence in the population as far back as we could study.  Genetic studies suggest something similar – autism has probably been part of our genome for a very long time.  Meanwhile, autism continued to be diagnosed by behavioral observation, and some psychiatrists made a specialty of using those parameters to retrospectively diagnose characters in history.  Even though that work was controversial, it further supported the view that autism has always been here.  

By 2012, autistic adults had begun to appear on the public stage in considerable numbers.  Many were quite critical of the disease model of autism, and they viewed the idea of cure as an attack on an essential part of the human genome.  At the same time, autistic people told stories of very real suffering, and they very much wanted relief.  But their suffering was not – for the most part – directly related to their autism.

Instead, people told of suffering from seizures, gastric distress and pain, anxiety, depression, Tourette’s and a host of other conditions we now call the co-occurring conditions of autism.  People who are so affected tend to want help, and they see their problems as medical in nature.  Their concerns are absolutely valid, and it’s a great shame that we have made so little progress in addressing these concerns.

Critics of research policy began speaking out about this.  They asked why funding sources continue to direct so many of their research dollars to low-level biological studies with translation horizons measured in decades, when people are suffering now.  A schism began to emerge, where foundation executives talked of the breakthroughs they were making in research, just as members of the autism community – parents and autistics alike – became increasingly critical of the absence of tangible help for autistic people.

They said: Basic studies are great, but what have you actually done for me (or my child)?

Technology began helping some formerly non-speaking autistics to communicate.  A small minority remain unable to communicate effectively and it’s no doubt a source of great frustration for both those autistics and their families. So far, research has brought that group little relief.

Meanwhile, other autistics began to challenge their limited acceptance in society.  They made the eloquent case that autistics are different, not less, and they asked for reasonable school and workplace accommodations.   Autistics with sensitivities to light or sound asked for “soft” spaces.  Autistics with social challenges asked to work online, where there disability is minimized.  Schools and corporations were asked to change their culture and workplace to accommodate people whose styles of learning, working, and living were different from what was presently accommodated.

By 2012, the question was, who would fund accommodation research?  Who would help schools and workplaces to change?  The original foundations – Lurie Marks, Simons, and Autism Speaks – retained their focus on basic science.  Their interest in this new direction seemed limited.

Corporations began looking at how autistic people might fit into their workplaces.  Some saw this as disability accommodation, but others saw autistics as a uniquely skilled group.  Nonprofits like Specialisterne emerged to help employers benefit from the special abilities of some autistic people.

Colleges explored the idea of teaching neurodivergent students.  Institutions like Landmark College opened, and focused exclusively on people with autism and other developmental differences.  Traditional schools like William & Mary and Drexel began exploring ways to integrate neurodivergent students into existing college structures. 

With this shift in the perception of autism and its challenges there is a gap in philanthropy.  The three foundations that first addressed autism have put hundreds of millions of dollars into basic research.  They have funded the development of better screening tools.  They have begun to unravel the roots of very profound disability in some of us.  They have supported research into treatments and therapies that are beginning to bear real substantive fruit.

What they have not done is fund major studies into better societal accommodation.  Very little has been done to help autistic people find work, keep jobs, and build stable, independent, and happy adult lives.  That stands as a critical unfilled need in the autism community.

At the college level, two smaller foundations have embraced this goal.  The Arnow Family Fund gave a grant to William & Mary to establish its neurodiversity program in 2012, and W&M became the first major American university to offer credit courses on neurodiversity.  In 2015, the Olitsky Family Foundation also embraced neurodiversity, supporting the work of William & Mary, Drexel, and Specialisterne among others. 

William & Mary made neurodiversity part of the college culture, just like racial diversity was embraced in the sixties.  Embracing neurodivergent students was a part of their mission, but a larger goal is teaching the whole student body about the value of autistic people, and others with neurological differences. 

Drexel has a more vocation-oriented approach, working on ways to help neurodiverse students integrate into workplaces while still in college; teaching work skills alongside academic studies.  Drexel began a major initiative to study post high school and college outcomes for autistic students, and learn from those insights.

But they can only go so far on their own.  My hope is that more philanthropists will follow the lead of Arnow and Olitsky, and fund quality-of-life focused research to help people who live with autism today.  Simons and Lurie Marks have shaped up as quiet, solid leaders in basic science.  Autism Speaks is searching for a new direction, and may yet chart a course that better benefits the broad autism community.  Like Simons, the Olitskys are becoming quiet leaders in this new arena and the Arnow family will always be known as the first to fund neurodiversity in college.

We’ve put millions into basic genetics.  It’s time to put similar investment into therapies to help make friends, keep jobs, and organize our lives.  It’s time to explore the ways in which autistic people can best fit into the colleges and workplaces of tomorrow.  It’s time to invest in our schools, to show them how to match ways of teaching to our different and varied ways of learning.

There’s a need for groups like Simons and Lurie Marks, and they’ve done great work.

But the community is speaking out, and identifying an additional set of needs that are frankly more pressing.  Groups like Arnow and Olitsky have recognized the challenge, but they need help.  Who will join them?

John Elder Robison 

Footnote:  There are many other philanthropists funding autism research, and I mean no disrespect or marginalization to those not mentioned in this article.  As many as there are, I stand by the article’s premise that a new “primary need” is emerging in the autism community and we need philanthropy to rally to it..

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.

(c) 2007-2011 John Elder Robison

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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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