Saturday, February 6, 2016

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.

5 comments:

Usethebrains Godgiveyou said...

I feel each of the paths was begun by the particular story of the founders children, grandchildren, unique to that child. I understand the medical path. Having taught Special Education, it's pretty obvious most of those educated outside the regular classroom have totally unique challenges. It's no secret that a medical problem, if understood and caught early enough, can change the developmental outcome of the child. There are many things we don't know...but there are many things we do. Scientific understanding could lead to far less "suffering". (You have to be careful with that word--by this, I mean dependence on medical interventions for a quality of life, and not something interpreted eugenically.)They saw it medically because they saw their children's/grandchildren's troubles as medical. The Wrights went the vaccine route because they had questions regarding Christian's reactions that Science had no answers for. Having had my own child have a severe reaction that seems more common among kids with neurological problems helps me to understand this. But for Ben, whatever causes his neurological differences, probably determined at his conception, is what caused the reaction, not the other way around, to my weak mind. He was set up, biologically. I know 1 other person who sees it this way...in the whole world...

On the other hand, my son, who spent 90% of his time in the regular classroom, and in fact is somewhat gifted, fits right in with the new acceptance, accommodation, and development trajectory. It's not hard to say that I want it to continue. Outside of his own amazing abilities and difficult trials overcome, he may one day directly benefit should he just get worn down from the day to day battles he fights just to achieve his hard won success. It would be wonderful to have someone have his back besides his family. He carries so much himself, too, and to join others who know--the power in numbers can help his voice to be heard. What would be most wonderful would be for his gifts to be seen as outweighing his disabilities, that he could use his "special powers"!

Thanks for continuing to try to understand, and to keep fighting the battle for Ben. He thinks you're cool. But having seen what science can do for the kids I had in my classroom, I can't just forget about those kids, either. I guess I have a foot in each camp. But the kids who need you, need you in the camp you are in.

Confused yet? Welcome to my world! Really, I would have to say, for love of Ben, I suppose I prefer you change the world for him.

The Devil's Advocate said...

This female activist/advocate also figured out late in the game that brain was different due to Asperger's. Having been a foot soldier, becoming a nationally known activist and being recommended for DOD Peer Review Panal (in the overly pink world of breast cancer), I have but one question for you, sir. Would you please point me in the correct direction? Being well acquainted with your writing, it seems we are simpatico on the direction that needs to be taken - better quality of life and more compassion and empathy for all. Your past alignments with autism NFPs and your decisions to take the paths that you have taken = logical.

There is no cure. We are not diseased. We are ill-at-ease because NTs do not "get" us. Our brains work different. That's it.

It's time for them to understand US. And if they have to be killed with kindness or beautifully designed, light and hair-trigger balanced metaphoric bludgeoning devices - I'm in.

GrannyP said...

In 1954 I delivered a healthy baby boy--all tests were normal and he grew quite normally. One day, when he was 18 months old, he suddenly withdrew and stopped talking, sat and watched leaves flutter, or rain drops for hours. We took him to the chief child psychiatrist at a very well respected child guidance clinic, who told us first, it was probably my fault, because I was not "warm enough" and secondly, since he obviously had developed early childhood schizophrenia and should be institutionalized, My husband and and I were horrified and refused to do that. We kept him at home with his siblings and, while it was difficult, he did seem to absorb everything going on, though he could not communicate. Then one day when he had just turned 4, he suddenly looked at all of us, including the pets and pointed to each and named us perfectly. His school years were difficult, with some classmates essentially bullying him. Luckily for us, the school did accommodate him, and when he reach high school, he was enrolled in the culinary arts program at the area technical school,where he excelled and even won an award. He has had his ups and downs, but has succeeded beyond what we ever expected. He is employed at a very exclusive restaurant in Arizona, and living in apartment with an old friend. He is now 63 and thinking about how he will cope when he has to retire, and will no longer have a routine to follow. That shows a great deal of insight..

Thomas Durwood said...

Hi John --

I heard your NPR interview this morning and wanted to say how much I enjoyed it. You are a good man.

Tom Durwood
Philadelphia

Kanani said...

Bingo: "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."

We need to take tribal approach to meet that end. That is, recognizing that within the community each person fulfills a role and everything is done for the betterment of the whole --not the individual. I think of how this realization can alter the perspective of parents who have an adult child with a college degree, who is "only" able to find a minimum wage job. Sure, a disappointment to the parent, but that person might be trying their very hardest. And while you don't want to inflate what it is, a minimum wage job is better than none.

It does put the onus on the parent or on the community of educators, social workers, professors to work on creating or finding the right opportunities for people on the spectrum, rather than trying to force fit them to a one-size-fits all. And that's where much more resources need to be allocated and advocated for. Because what I've found is that as the child turns into an adult, the parents are very much alone in their challenges. And that doesn't have to be the case, if we take the tribal approach.