Wednesday, November 9, 2016

The Election, and the Morning After. What next?

What now?

In the aftermath of this election there is some celebration but for others there is tremendous angst, fear, and unrest. The election map shows what a bubble those of us in the northeast and west coasts live in relative to the rest of the country. I saw that clearly last week, when I spoke in South Carolina at that state’s annual autism conference.  My travels took me from a land of Bernie and Clinton signs to one dominated by Trump/Pence.

I had been asked to speak about autism and employment. But as I told the audience, we could not really address that issue until we addressed the idea of acceptance within our own population, and we built a community of mutual support. With those things done, we (the autism community) will have come a long way toward solving our problems ourselves. And that is how it should be.

My journey that day carried me from one political extreme to another – liberal democratic Western Massachusetts to conservative republican South Carolina. People in those communities very likely held totally opposite political views, and if our dysfunctional government is any example, they might have said there was little common ground.

Yet I was common ground, if an individual can be said to be such a thing. My words of community building and autism acceptance were welcomed at two Thursday events in Massachusetts. There was strong support for the ideas I offered. Then I flew to South Carolina for Friday’s session, where I got a standing ovation for expressing those same ideas.

In my government service I come into contact with people who hold many views on the subject of autism, some in sharp conflict with my own. Rather than argue and fight nonproductively, I say to those people: Let us find the things we agree upon – like the critical need for supports as autistic teens enter adulthood – and let us fight for those things together, rather than fighting each other about areas where we disagree.

Only by joining together will we find a path forward.

Another point to consider is that we can only be master of our own actions. Our ability to regulate others is always more limited than we think. Anyone who imagines himself King of His Household has experienced that firsthand, as teenagers grow up and develop strange ideas of their own. At the same time, we must recognize that our words have influence, and we should be mindful of what we say, and what we want that influence to be. For myself, I can spread a message of acceptance and community building among autistic people. What others do when they hear that is up to them. Whether they embrace that message in other aspects of their lives, is up to them as well.

The election was the focus of millions last night. Today there is a widespread sense of, what now? Whether you supported Trump, Clinton, or neither, the reality for most of us remains the same. For me, there are still cars to be fixed at Robison Service. There are still kids to be taught at Tri County. There are still ambulance calls throughout our city, and expectant moms are still coming here for our child safety seat program. So I am here at work to ensure those things happen seamlessly.

I’ve written before about how I can’t go to movies because I am overwhelmed by the concentrated and exaggerated emotions. The televised election coverage last night was the same. I could not handle it and read a book. Today I awoke to the news of our new president. And I went to work.

You or I may have ideas about running the country better. Most of us do. But we are not running the country. You do what you do, and I am “running” this little circle of things – my businesses, teaching, our emergency service complex, and my speaking and advocacy. No matter who gets elected I will continue to do the best I can at what I do, and encourage others to join together in shared missions. I hope you can do the same.

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 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, August 22, 2016

SWITCHED ON and brain stimulation in Australia

Next week I set out for two weeks in Australia, talking about brain stimulation and the SWITCHED ON story.  I hope to see some of you there!

Friday Sept 2 - Sydney
6PM Welcome dinner for the Festival of Dangerous Ideas, Sydney Opera House

Saturday Sept 3 - All over Australia
ABC Radio National - All in the Mind

4PM Festival of Dangerous Ideas opening

Sunday Sept 4 - Sydney
12:00 - My session will be in the Drama Theatre at the Sydney Opera House

Monday Sept 5 - Adelaide
6:30PM Adelaide Writers Week in Conversation with Roy Eccleston
University of Adelaide North Terrace

Tuesday Sept 6 - Melbourne
2:20PM Join me LIVE on Daily Edition television

5PM Autism Awareness workshop at Arena Academy, Docklands, 700 Bourke St

Wednesday Sept 7 Melbourne
8AM ABS News breakfast television with Virginia and Michael

Thursday Sept 8 Melbourne
8:45 Triple R Breakfasters radio - Sarah Smith, Jeff Sparrow, Geraldine Hickey

Saturday Sept 10 Brisbane

11:30 In Conversation - SWITCHED ON Brisbane Book Festival, Aud 1, SLQ

Sunday Sept 11 Brisbane

1PM Building a Better Brain - The Edge SLQ

Sunday, July 17, 2016

Thoughts on the direction of autism research

Thoughts on the role of the Interagency Autism Coordinating Committee, from an autistic person.  Note that the views in this essay are my personal opinions only, and not the views of the committee or any government agency. 

One role of this committee (IACC) should be to serve as a bridge between the autism community and the Federal agencies charged with supporting that autistic people and their families.  We started by identifying questions to be answered and then reporting advances in autism research.

In the past three years a glaring hole has emerged.

From the beginning autism diagnosis and treatment focused on children.  Autistic behavior was first characterized in children in the 1920s and 1930s.  By 1943 clinicians had observed that autistic symptoms were often present from the beginning of life.  At the same time, regression had also been observed in some kids. 

By 1950 Leo Kanner, George Frankl, and others had recognized the neurobiological basis of autism that most scientists accept today.  As such, autism was recognized as a lifelong condition.  Kanner and other pioneers of autism diagnosis would later take pride in following the development of some of “their” autistic children into adulthood.

Sixty-some years have passed since autism was recognized as a neurological difference.  In that time countless child therapies have been developed but virtually nothing has been done for adults.   In the modern era this committee began with a focus on autism in children.  It is just in the past few years that we’ve begun to recognize adult needs.

Autism is unique in medicine, in that the support needs of adults are different from those of children.  When we look at other lifelong medical conditions we see tools and therapies that help across the lifespan.  For example, wheelchairs or artificial limbs are of the same use to adults and children.  In many cases, medicines that help children also help adults.

That is sometimes true for autistic people too.  Therapies that help us calm and self regulate can help children and adults alike.  But adults have unique problems that children don’t share.  Job coaching, for example.  Recent research has shown that autistic adults have many previously unknown health vulnerabilities, and little is known of them.  Finally, autistic children are assumed to live with their parents.  Where are autistic adults supposed to live, when our parents are gone and we are not able to remain self-supporting and independent?

Over the past decade, we have spent over a billion dollars on autism research.  While some of that research will surely benefit families of tomorrow, very little of it will benefit those of us living with autism today. It is my feeling that we should divide our efforts and follow a two-pronged approach when we allocate research funds for tomorrow.

We should continue our efforts to unravel the biological foundations of autism.  We’ve already figured out that there are probably not one “autism” but rather hundreds or thousands of “autisms” . . . different pathways to a similar set of observable symptoms.  That may lead to many different treatments for the most disabling aspects of autism.  I hope we also find ways to relieve the many co-occurring conditions that plague autistic people and cause suffering and early mortality.

At the same time, I believe we should devote a significant portion of our research budget to develop tools that maximize the quality of life for those of us living with autism now.

In other words, I think it’s great that we may find a drug that helps relieve sensory overload for the autistic people of 2031.  There’s still value in developing headphones or quiet spaces to help the autistic people of 2018. We can do both, and we should.  The promise of a drug in 10 years is not what a person who suffers today wants to hear.  It’s within our power to do both, by following parallel paths – one long and the other short.  One path may be medicine based, while the other relies on electrical engineering. 

That’s also an important point – we first saw autism as a medical issue.  Now it’s clear that practical assistance for autistics may come from chemists, electrical engineers, psychologists, computer scientists, and a host of other professions.  We need to bring those people into our community, and into these processes.

We have – in my opinion – lost sight of our duty to the American people.  That duty is to deliver tangible timely benefit to the autism community.  By focusing on the long term, we have effectively ignored the current plight of millions of Americans in the hope that “we will solve this problem for the generation of tomorrow.”  By focusing on medicine we have failed to support technology based aids that could be delivering real value today.

I think this happened with the best of intentions.  We first approached autism like smallpox or polio – as a disease to be vanquished.  Why invest in developing supports for what was effectively a plague?  Better we find a cure, or even better, a vaccine to head it off before it begins.  That is the mindset most medical professionals brought to autism research a decade ago.   Few hold that view today.

Today’s view is more nuanced.  On the one hand, we see that environmental exposures can precipitate maladaptive autistic development, and we seek to identify those causes and head them off.  At the same time, we see others who inherit autistic differences, grow up to be reasonably functional, and pass a form of autism on to their own children.  Then there are the people who develop idiopathic autism – a disability with no known cause. 

With such a heterogeneous population it should be clear that the “disease conquest” model we started out with is not the answer for every autistic.  Yet that mindset continues to guide our research.  The overwhelming majority of funding goes to basic research even as we recognize that there’s a significant portion of the autistic population for which that work is probably irrelevant.  And their needs remain unmet.

The first step is to accept that autism is not what doctors thought it was, ten years ago.  In fact it’s not any one thing.  It’s many things.  For each of those, we must ask – are we seeking a cure, or a remediation of disability or suffering?  And we should also ask, is there a short term support or aid we can deploy while we pursue a greater long term goal?

The next step is to adjust our research goals with that in mind.

We must balance our duty to help the population living with autism today against the possibility of developing greater benefit for a future autistic population.  That means recognizing and supporting autistic adults, throughout the lifespan.  Autism is not a childhood issue that goes away.  It is a lifetime condition.

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 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, June 13, 2016

Non Speaking Autistics and College

I was thrilled to see a non speaking autistic person among the attendees.  To the best of my knowledge he was the first such person to attend and take part in our neurodiversity programming.  At one point, he asked, “When will colleges be ready for students like me?”  He was accompanied by an aide (she was beside him in high school class too) and he communicated through a letter board where he spelled out his thoughts, and she verbalized them.  That’s a somewhat familiar scenario in high school, but rare in higher education.

I wondered how long it would be (if ever) before technology could take the place of the aide.  It seems like a simple process until you watch it happen, and realize the aide does far more than add word spacing and punctuation. She also adds focus, by asking questions and helping clarify thoughts.  I can see a machine solving the punctuation puzzle, but machine intelligence has a ways to evolve for the rest.

Replacing that student’s letter board with an ipad would not eliminate his need for assistance in school.  And he was 18 – with college potentially a year or so away.  I told him about specialized autism programs like the one at Landmark College in Vermont, where they have aides like the one he brought to class, and a wide range of intensive support services.  That’s one possibility for college, right now.

The other possibility is to obtain funding for an aide through state disability services, and have an aide accompany him to a more traditional (and more affordable) state college.  Unfortunately, the availability of services varies widely across the country. 

Digging deeper, I realized the aide is not the only issue.  What about housing, and general living supports?  A non-speaking person with high support needs cannot simply go off to college like a student without disability.  Once again, we have the example of specialized colleges like Landmark who have substantial support abilities, and students can turn to state agencies for help.

This adds up to a substantial restriction on the college options for a non-speaking person.  If they are registered with disability services in the state where they live it may be easier to attend school in that state.  But what if they want to attend an out of state school?  That may be a lot more work to set up. And support funding is by no means assured.  Private autism-centered schools like Landmark are an option, but they are few in number and the cost will be prohibitive for many families.

William & Mary is committed to making a campus that’s friendly and welcoming to neurodivergent students, but this was a student we could not accommodate with the college’s resources alone.  And I’m sure we are typical of mainstream colleges in this regard.  The truth is, we’ve had very few requests for this kind of accommodation up till now, but I am sure they are coming.

How will college admission officers evaluate applications from non-speaking students?  The desire of colleges to use a standardized writing-intensive application runs hard up against the desire for neurodiversity accommodation in students like this, whose disability makes it hard to be expressive in writing.  We owe it to the students of tomorrow to solve this problem. 

We talk about community college as a good path for autistic students who want a gentler transition to college.  Most community college students live at home, so that transition is delayed.  Community college classes tend to be smaller, and that may be less stressful.  Community colleges also tend to be in-state, so accommodation services may be easier to obtain.  Admission processes are far easier, and tuitions are low. The transition from community college to a regular college is generally a lot easier than going straight from high school. 

Is that – and our existing array of accommodations - enough to accommodate students like the one in this weekend’s class?  Time will tell.

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. 

Tuesday, March 22, 2016

Switched On, and Autistic Feeling

Switched On has gone on sale today, and people are already reading and talking about it. The book tells the story of my participation in experiments where Harvard neuroscientists used high-powered magnetic energy to “switch on” the ability to see emotions in other people. One effect of the experiments was a “stepping up” of emotional response in me.
Want to hear me talk about it in my own words? Listen to me describe it on NPR “Here and Now.”  Skip forward to minute 8 if you want to hear my thoughts on this.
One of the things that is happening now is that some non-autistic people are commenting on the book in ways that are hurtful to me, and probably other autistics. I don’t think they mean to be hurtful, but they are. If I may, I’d like to illustrate what I mean.
One reviewer wrote: “Imagine you are a robot. A smart robot. Now imagine scientists flip a switch, and you suddenly have feelings.” That is the premise of a Star Trek episode, folks, but it’s not the premise of Switched On.
In my book I talk about how someone said I looked like a talking robot in a video long ago, and how hurt I was by that comment. Then, after TMS, I felt I could understand why they said that, because my face was very fixed and rigid. But here’s the thing: understanding did not make it any less hurtful to hear. If you were called a freak all through your childhood, how do you think that would feel to hear as an adult?
In Switched On, I explain in several different ways that we autistics have deep and strong feelings. What’s different about us is that we may not express them in the expected ways, and we may not have typical responses to things that might trigger an emotional response in you.
That is not robot behavior. That is autistic behavior. Read my book for the scientific studies that explored that, why it can be beneficial, and what it means. 
I’m not going to give away the whole book in one blog post but I would like to say this: Switched On is a story of expanding my ability to engage other people by turning on my ability to read their unspoken social cues. It’s not a story of me going from “having no feelings” to “having feelings.” That was Mister Spock on TV.
Make of my book what you will, but keep in mind that I – and every other autistic person you are likely to meet – has the same ability as you to feel things. In fact, as you will read, our emotions often run deeper and longer than those of non autistics. So please be mindful of what you say. Words do hurt.
Turning on the ability to read other people is a remarkable achievement that strikes at a central feature of disability for many autistics. For many of us, the most painful thing we live with is social isolation. For too many of us, the pain is overwhelming, and we turn to suicide. Did you know the rate of suicide for bright autistic teens is over nine times that for the general population? So it’s no laughing matter.
The autism spectrum is very broad. Some autistics are pretty good readers of other people. Others (like me) are very poor indeed. That was what sparked my interest in the study. I saw a chance to maybe get past something that had caused me lots of pain and loneliness for 50 years. If you’d lived with that ache all your life, and saw a chance to escape it, would you take it?
Not every autistic person would want a therapy like this, should it become widely available. Not everyone wants TMS or other depression treatment. That is their right (to choose.) For others, it can be life changing or life saving.
Best wishes, and enjoy the story.
John Elder Robison

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.