The William and Mary Neurodiversity Initiative Welcomes the Class of 2022. If you are interested in learning more about the initiative or getting involved with the student group please reach out to us at firstname.lastname@example.org!
Written by John Elder Robison and Taken from his blog HERE.
How do you define autism? Five years ago I became an autistic member of the steering committee for the World Health Organization’s Autism ICF Core Set project. This January the Core Set was released. You can read it here:
You can read about the process in our group’s earlier papers, which are listed in the above article.
The Core Set identifies the ways autism affects us, and gives a better focus for understanding and study. One thing I am proud of Is that this represents the first time the WHO has recognized both disability and exceptionality in a condition. Before autism, the WHO’s descriptions only described degrees of diminished function. Now, with the autism set, we recognize that exceptional abilities in certain areas of function can be just as characteristic of autism as disabilities in others.
For the first time a WHO definition encompasses what we call social and medical models of autism by integrating how we engage the wider world into the characteristic description of how autism shapes us.
It’s also noteworthy that this is one of the first (if not the first) Core Set to be developed with the input of actual affected individuals.
From the introduction to the Core Set peper:
The use of ICF may foster an approach of managing ASD that emphasizes individual abilities, disabilities, and the context that has an impact on the individual’s functioning. This approach is potentially meaningful for several reasons (Bölte, 2009; Escorpizo et al., 2013). First, not only is functioning often perceived as less stigmatizing than psychopathology or diagnosis, but problems in functioning are also often the reason for initial referral to services and focus for interventions rather than psychopathology itself. Given this, aspects of functioning are likely to be more tangible and meaningful than psychopathology/diagnosis to individuals with ASD, their families, and society as a whole. Aspects of functioning are also well suited to describe an individual’s real-life challenges and to guide individual intervention planning (Castro and Pinto, 2013). A functional lens may enable better calculation of health-related service costs (Hopfe et al., 2017; Schraner et al., 2008). Finally, individual descriptions of functional abilities and disabilities may also enhance communication between individuals on the autism spectrum, their environment, and experts. The ICF highlights the influence of the environment, stressing its positive and negative role in influencing outcome. Recognizing that environmental factors influence an individual’s outcome provides an opportunity to change those factors toward outcome improvement. It is also important to note that the ICF offers a framework to assess strengths, rather than just disability.
The Core Set effort was organized and led by Sven Bolte, Elles De Schipper and their colleagues at Karolinska Institute in Stockholm and elsewhere. I’m proud to have had the chance to assist in the effort and look forward to continuing in work like this, and being joined by other autistic researchers and concerned individuals.
(c) 2018 John Elder Robison
William & Mary welcomes freshmen of the Class of 2021. The coming year marks two important milestones in our University’s history. Last week W&M president Taylor Reveley reminded us that this is the 50th anniversary of the first African American students living on campus and having full access to William & Mary’s facilities. In the ensuing decades our university has welcomed many other students of color, and we have embraced other kinds of diversity – racial, sexual, and religious.
This year also marks another diversity anniversary. In 2012, William & Mary established the Neurodiversity initiative, and the following year we became the first major American university to teach that subject. This coming year represents the fifth year our university has specifically recognized students with neurological diversity – autism, ADHD, dyslexia, and other differences. We are proud to be at the cutting edge of this emerging field, and look forward to teaching its principles to our incoming class. Neurodiversity is unique in that it touches people of both sexes and every race.
Written by John Elder Robison and taken from his blog here.
Two years ago I was invited to the island of Hawaii to speak about autism and neurodiversity on behalf of the Department of Education. Before going there I read what I could find on autism and its culture in Hawaii. There was not much going on, as far as autism culture. But there was a great renaissance of native Hawaiian culture. Autism has been part of humanity for quite a long time, so I realized the two must be intertwined, but how? One place where I immediately suspected a connection was in the area of navigation.
That set me exploring the possibility that some Polynesian navigators may be/have been autistic. That has been a fascinating thing to study, and it raised another question that I’d like to discuss – does a western diagnostic label that we associate with disability have relevance when applied to a gifted individual performing a specialized task in the South Pacific? That question struck me as I watched video of Mau Piailug, an indigenous navigator from the island of Satawal who died in 2010.
Polynesian navigators were for many years the finest navigators in the world. Using their eyes and their minds – no tools or maps – they successfully steered vessels over vast distances to every corner of the Pacific. They did this over thousands of years, during a time that western navigators had absolutely no idea how to find a speck in the ocean like Hawaii or Tahiti.
Polynesian navigation is often referred to as wayfinding to distinguish it from the instrument and chart based navigation practiced elsewhere in the world. As soon as I read about the various cognitive requirements of the job I thought it was something autistic people would be ideally suited to. I wondered if there was any evidence of autism in wayfinders and indeed there were clues in various writings. The thing that really cinched it for me, though, was watching videos of a master wayfinder from the island of Satawal.
When I watched the videos I saw many signs of the broad autism phenotype in Piailug’s speech, expressions, and behavior. He did not look at the person he was speaking to, or the camera. He looked down almost all the time. He spoke in a near monotone with a pattern of prosody I’ve learned to associate with autism. When he spoke, his eyes and upper face were generally devoid of animation and he seldom displayed large expressions. He also had the flat affect that is common to autistic speakers. To a trained eye, those were all signs of autism. Yet the films did not depict a disabled man. They showed an exceptional man telling his story for an appreciative listener.
Watching Piailug speak, I thought to myself, what would I say to him, if I were there? Would I focus on the magnitude of his achievements, safely navigating open boats across thousands of miles of trackless ocean? Or would say the tendency to look at the ground when speaking is common in autistic people, and he does that. I could go on to enumerate fifty points of diagnosis, but in the end I could not help but think, so what? It’s not his autistic behaviors that matter, it’s his life work.
Mau Piailug was a respected leader in his pacific island community and the west. He came to the attention of American media when he navigated a Hawaiian voyaging canoe 2,500 miles from Hawaii to Tahiti with nothing more than his eyes and his mind to guide him. He didn’t use charts or a compass. In fact, he did not even know how to use them. He did something we regard as extraordinary, but to him it was ordinary; so much so that according to him the outcome was never in doubt.
He simply did what he’d been trained to do from childhood. His grandfather started his training when he was a toddler, dipping him in tidal pools so he could feel the sea. By age 18 he could navigate on his own, and by the time of the Tahiti passage he had been navigating the Pacific for 25 years.
He willingly shared his secrets – how he did it. You start by memorizing the sky, he explained. Stars become the points of your compass. Wayfinders don’t need to memorize the whole sky, he assures his audience, just a few hundred stars. By memorizing how the stars move through the sky and how high they climb you can determine latitude. He makes it sound simple, and it is, if you have a photographic memory and the ability to make accurate measurements and comparisons in your mind. Luckily some of us autistics have that ability.
Then there are the ocean currents, and the winds, and the evidence of fish and birds. In America autistic people are disabled by our sensory sensitivity. For navigators like Piailug our exceptional sensitivity isn’t disabling. It’s life saving.
When listening to him it’s apparent that he accurately senses things many others cannot see at all, based on many accounts. Where a typical person merely feels a wave rock the boat he senses the angle of the rocking and realizes when it’s different from the angle he felt a moment ago. From that he knows the boat has wandered from its course. He has similar abilities to sense changes in the patterns in the sky, and in the winds he feels against his face.
American schools are filled with children who have similarly extreme sensory sensitivity. Almost to a one, their sensitivity is described as highly disabling. Watching Mau Piailug after seeing those kids reminds us how much of disability is a function of society and context. If Mau Piailug were told to read a high school math assignment while ignoring the rocking of the boat or the wind across his brow, he might well have been a failure too.
There is no evidence that anyone perceived Mau Piailug as disabled in his lifetime. To apply a disability diagnosis now from afar would strike many people as disrespectful and wrong. In the west we apply diagnostic labels when they serve a purpose. Most of the time, that purpose helps the person being diagnosed. When a person learns they are autistic they may understand why they were challenged in school, or making friends. Knowledge of autism may help them succeed better. But that’s here, in America. America is not an atoll in the Southwest Pacific. What purpose would be served by making a person like Mau Piailug aware of autism?
When I discussed the idea with anthropologists who study Polynesian navigation the idea that some navigators may have been autistic was rejected out of hand, because of their preconceived notions of autism as disability. In an American or European public school it is a disability, but it’s not so much in these island communities.
Thinking more about autism, one anthropologist suggested that autism may be less disabling in tightly knit Polynesian communities. Community may also have helped turn autism into more of a gift. In America autistic people are judged to “act strange” by strangers, and that’s said to be a disability. But on a small atoll like Satawal, there are few strangers, so people are just people. At the same time, if a person was particularly sensitive to the stars, winds, or waves, he would stand out as a future wayfinder. In America, all those things would just stand in the way of getting through public school.
It’s worth noting that autistic kids fail in many or most common educational or social situations in the western world. Do children who are different experience similar beginning-of-childhood failure in Polynesian society? That would be an interesting question to study, but it could be tough because autism does not appear widely recognized and the kids are therefore “just kids.” However that observation alone suggest less failure and greater integration.
Based on the evidence of the videos Mau Piailug seems like a great example of a successful respected person of the broad autism phenotype in Polynesian society. The career path he followed was chosen for him at an early age, and we can speculate that the choosers saw those abilities in him from the beginning, which suggests others of the broad autism phenotype were chosen similarly. The fit between the cognitive demands of wayfinding and autism seems purpose-made, and perhaps it was.
Given that, we can speculate that a significant number of Polynesian wayfinders may have been autistic throughout the years. We have no way to know. The fact is, autism per se had nothing to do with their finding their profession. They were chosen for their ancestry or their behaviors – both of which might suggest “autistic” to us but suggested “navigator material” to the Polynesians. It’s worth pondering which worldview is more personally empowering.
The place autism diagnosis has meaning is in our hi-tech western world. It’s here that autistics are disabled, and seeking explanation and insight. For an autistic teen in a modern-day Hawaiian school, the idea that a great wayfinder like Piailug may be “autistic like me” is very empowering. What it shows is that a class of people who are mostly disabled and less capable in our society can be exceptional in other circumstances and cultures.
Hawaiian culture is enjoying a well-deserved revival. It’s time for autistic people to find their place in that movement.
One of the big questions our autistic students wrestle with is the question of coming out. Even today there are many misconceptions about autism. When we disclose our autism, we’re often met with ignorance and judgment.
Perhaps the most frustrating thing is the widespread denial of intelligent articulate autistic people’s existence. “You’re a William and Mary student,” so-called experts say with authority. “You had to be sharp to get into a place like that. You can’t be autistic!”
Or the ever-popular, “My friend has an autistic son, and believe me, compared to him, you are not autistic at all. No way!”
One of the goals of our school’s neurodiversity initiative is to change harmful and wrong ideas like that. As much progress as we’ve made on campus, we recognize we’ve a long way to go to reshape the ideas of the broader American public. Many of our students see themselves carrying the neurodiversity banner out into the wider world on graduation. As they do that, they have to think about their careers, and what to say to prospective employers. Is this a case where discretion is the better part of valor?
If people are that misinformed and judgmental, students reason, I’d be crazy to disclose that I’m autistic in a job interview.
In many cases that is right. We cannot know what the recipient of a resume feels about autism, but it’s safe to say that most people view it as a disability or employment challenge. At this time, for most jobs, I’d say it’s better to focus on what exceptional skills and interests we have, and leave the autism word unspoken.
There’s a practical value to that. A human resources person might have no idea how to interpret a statement like, “I’m autistic” in the context of a job interview. Contrast that with this description of autistic focus: “I have a really strong ability to zero in on details, and I am a really dogged and determined researcher.” That would perk up the ears of many recruiters.
When you think about applying for a job, think about the things psychologists say about autistic people. Remember that childhood disabilities can (though not always) become adult gifts. The focus thing is an example of that. Also consider how our traits might shape our optimum job placement. Shyness or social anxiety might better translate to “Really good at working alone,” or “comfortable taking the night shifts when no one else is here.”
Obviously the strengths, weaknesses, and answers will be different for everyone, but the point remains that we can emphasize how autism suits us for a job, without necessarily mentioning autism at all.
What if we need to disclose disability issues that need accommodation? That is another matter, but it needn’t always come up. What if we need to wear earplugs, or have gut issues that require frequent bathroom breaks? My thought is that those are bridges to cross when we come to them. Frequent bathroom breaks or earplugs could be deal breakers for some jobs but non-issues for others. See what’s offered before volunteering a possible issue. Even better, choose to apply for jobs where the fit seems most obvious.
There are some companies where a different thinking may apply. For example, the European software giant SAP has publicly stated that they want to hire autistic people. So if a W&M student saw an SAP job that seemed a fit, I’d think describing the reasons for the fit and saying that may be because of autism could be of benefit.
We are also seeing smaller businesses that are headed by openly autistic people, and disclosure may be beneficial there too.
As time goes on more and more companies may announce autistic hiring goals, and the disclosure landscape may be very different by the time today’s freshmen graduate
This is something we should be monitoring in our neurodiversity groups on-campus, and discussing as it evolves.
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.
February 17, 2016
First of all, I compliment you on the quality of thought you put into the reaction papers. I’d like to address some of your questions and comments.
I am glad to read that your concept of the autism spectrum has been broadened. It is indeed very wide. Some ask if it extends all the way from typicality to total disability, and I’d like to take a stab at answering that.
According to ICD-10, autism is broadly characterized as qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities.
Question for you: Why might I cite ICD-10 instead of DSM5? What’s the difference?
Under either definition, an autistic person has significant challenges with social interactions – usually communication based. Here’s one key to why some many more people are diagnosed autistic today:
In 1970, “communication challenges” meant you could not talk, or understand language. By 2010, “communication challenges” included the inability to read subtleties of body language in an otherwise articulate person. That difference is essentially why we have autistic W&M students today, and we had none in 1970.
In addition, the autistic person also has restricted or focused interests, and tends to have ritualized or repetitive behaviors. Examples might be compulsive hand washing, or stimming. Those are often seen as signs of disability. But a focused interest might also be a fixation on solving math problems, which obviously could have real career potential.
Obviously we could say lots of people have some of those traits. But most don’t have ALL the traits, and even if they do, most do not have the traits to such an extent that they present problems in everyday functioning. That is the key for diagnosis – you have to manifest multiple autistic traits to an extent that it’s a problem for you. If you have some traits, but they do not rise to that level of impairment, you are said to be part of the Broader Autism Phenotype.
If autistic people make up 1.5-2% of the population, BAP people make up another 5-8%. That adds up to quite a number of people, doesn’t it? Often, BAP people have family members who are more impaired and are diagnosed at different points on the spectrum. So in a sense the BAP shades invisibly into typicality but you need to have significant impairment to receive a formal diagnosis.
At the other end we have people who present a combination of autism and cognitive limitation or impairment. And some of you asked, is that the same condition? Yes, it is. We could take many groups of people – Mexicans, Middle Class Americans, or even Denver Broncos Fans, and within that group we would have people at all points on the IQ scale. You don’t usually give that any thought but it’s true. Just as it’s true for Autistic people.
Some autistic people are really smart. Most are in the middle. Some have very low IQ. Here’s another point: Autistic people often have higher logical intelligence than emotional intelligence. As a practical matter, that can cause an autistic person with an IQ of 100 to act like a non-autistic person with an IQ of 85 in a social setting. Yet you might give that person a puzzle to solve and he’d be quicker than a non autistic with an IQ of 115.
That’s a gift in the higher end of the IQ range, but autism combined with low IQ or cognitive disability is very, very disabling. But that does not make it fundamentally different. There are intellectually disabled people with autistic communication challenges and there are bright people with autistic communication challenges. They may differ in many ways, and their communication challenges may be very different but if the primary issue is communication challenge as opposed to general cognitive function, that’s autism. In a group of non-autistic people, would we say the ones with the lowest IQ are somehow fundamentally different?
It’s the same here.
We can take a group of people that are pre-selected for high IQ – say, W&M or Harvard students. Even within that group, there are bright autistic students with intellectually disabled siblings, some of whom are also on the autism spectrum. And there are non-autistic W&M students with intellectually disabled siblings. So all the combinations are all over the population.
I agree with those of you who observed that people with cognitive impairments have a wholly different set of challenges than most of you. That’s a really important insight and one to keep in mind when you talk to other autistics or their families – their lives may be very different from what you’ve known via your own exposure here or elsewhere. They may seek treatments you would not want or need.
So should it be celebrated? Obviously very few people are going to celebrate a disability that prevents a person from talking. But we can celebrate the achievements of autistics at many levels, and some of those achievers don’t talk much or at all. Google Stephen Wiltshire for an example.
There are people who say things like, “I celebrate humanity in all its diversity,” and when a person says that they should be including autistic and neurotypical people, gay and straight people, black and white people, Christian or Muslim, etc. Neurological diversity is one of many diversities and there are severely disabled members of all those other groups, just as there are gifted members.
Several of you asked where the bounds of neurodiversity are. I think the answer is, they are where you think they should be. If you think you are different, and you find comfort among the student neurodiversity group, you should become a proud member of the tribe. There should not be a “qualification test.” If you read a book about autism and say, that feels like me, and you change your life for the better as a result, that is enough. You too can feel part of the tribe. And you may know or love someone and feel part of the tribe by proxy. It should be a pretty open thing, in my opinion. But that’s just my opinion. You students will make of it what you will. The course of the W&M neurodiversity student group is to a large extent yours to chart.
You asked if the concept of neurodiversity has meaning to the mother of a severely impacted child. I think it does. The perspective of how an autistic person thinks should be of value to a non-autistic parent. Furthermore, many of the gifted autistic adults you will meet were pretty obviously disabled as children, and it’s hard to know where any kid will go.
What about kids with medical problems, like seizures? Obviously not all autistics have those issues and we may have nothing in common in that sense. What we can share is the sense of duty to our tribe. That is, those of us who become autistic self advocates can and should speak out in favor of developing treatments and therapies to help ALL autistics, not just “autistics like us.” That may mean social skills coaching for you, effective treatment for seizures for her, and basic life skills training for your brother. And there will be a few autistics that will require lifelong support in a group home or assisted living. Always remember our duty to speak up for brothers and sisters who can’t.
Another of you asked me about the evolutionary purpose of autism. He asked how autism differs from alternate sexual orientation. Why do gay people exist when there is such a strong selection pressure against something that precludes having children?
I can only offer some partial answers for that, from the perspective of autism research. Studies have shown that autistic people are much more likely to make alternate choices of sexual orientation, or display greater flexibility with respect to orientation. The best theory at this moment is that autistics are less connected to the social fabric around them, and therefore choose opportunities or evaluate situations with different/more flexible criteria. And that leads to different choices than typical people make. In that situation an alternate sexuality might be a genetic side effect of a trait that was expressed in the person’s neurodiversity, and that might be selected for its own reasons. Look up the work of Isabelle Henault if you want to read more on that.
The same student challenged my assertion that inherited autism persists in the human genome because it’s beneficial. He said, Huntington’s also persists in the genome, and yet it kills people. . . . Maybe so, but we do not know what other effects the Huntington’s gene has. Maybe at confers immunity to a disease that was deadly to our forebears. The fact is, this stuff is too complex to know but the evidence is fairly consistent that evolution selects for the better shaping of species, and the fact that we don’t understand it all today does not make it any less likely.
I believe autistic people have benefited our species tremendously, and I doubt that is a new development. If some disabled people are the cost of that, evolution would not care. At least that’s what I believe.
The same person says whatever we believe about disability or genetics all people are still entitled to the same human rights and respect and that is a great observation!!
Another student remarked on my hat. The hat is an example of a behavior we can learn, and how it can help us out. I can’t read your body language. I am face blind, so I would not recognize you in the store. Social failures based on those disabilities of mine would embarrass both of us. So I do things to minimize the chance. I wear a hat that is pretty unique on campus. So you can say, “That’s Robison!”
The hat also marks me as well dressed, as opposed to looking like a ruffian. So if you met me outside of class, and I asked your directions, and looked at you strangely, you would be more likely to think I was OK, than think I was a weirdo. When I lack social skill, being better dressed helps me fit in. The hat is a Borsalino fedora. Google that if you are curious. Borsalino hats have been worn by many social outcasts, musicians, freaks, and geeks. Even presidents and mobsters have worn them. I am in good company.
I’ll look forward to seeing you all in a couple weeks.
John Elder Robison
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?
Reposted from http://jerobison.blogspot.com/2015/10/the-challenges-of-neurodiversity-in.html
In the late 1660s an unemployed Anglican priest in from Swinbrook, England pondered his next move. Times were tough in England. The war had ended, so the army and navy weren’t hiring. With a surplus of clergy, ministries with livings were tough to come by, even for a man with an Oxford education and a parent who’d spent his life in the church.
When his father died, leaving him some money and a library, Rowland Jones decided to take his chances in the newly established Virginia Colony. Both his parents were gone, and his uncle Edward and four of his sisters were already there. They’d been some of the early settlers to the colony.
In 1674 Rev. Jones joined his sisters and his uncle in the new land. He knew there was a need for clergy, and he hoped to find his fortune. He was welcomed by the vestrymen of Middle Plantation, who offered him the rectorship of the newly formed Bruton Parish. He served them for the next fourteen years,, marrying and raising a family in what is now Williamsburg.
Meanwhile his siblings established a Quaker community across the James River at Levy Neck. It may have been religious differences that led those relatives to Virginia, which in the mid-seventeenth century was still a pretty wild and dangerous land. Untimely death from accident and disease were still a part of life when Rowland arrived. A few years after settling, Rowland’s first wife succumbed, and he married again, only to die himself seven years after that. He left a behind two young children – six-year-old Orlando and three-year-old Anna Maria. In his will, he entrusted them to the care of his sister Bressie.
At about that same time, Rev. James Blair came to Bruton Parish, where he established the school we know today as the College of William & Mary. Blair had been sent by the Bishop of London to reform the wayward colonists. He began that process in a few years earlier in Jamestown, where he married and established a base. After weeding out the worst of the errant clergy, he realized the colony needed the ability to educate its own people and he turned his attention to the school.
By 1693 there were a number of well to do planters around Bruton Parish, and they were happy to have a school for their children. Orlando Jones wasn’t a rich man’s son, but Blair also saw potential in the young man, and took him in as one of William & Mary’s first students. By 1699, Orlando had become one of four Scholars in Residence – the first Virginia trained faculty. The next year Blair promoted Orlando to be usher of the grammar school – a position we now know as provost. In 1701, Jones traveled to London to study law, and when he returned he became the College’s first counsel, and a Burgess for Williamsburg.
Fast-forward three hundred years.
I was born in the south, where history has a hold on many families. My grandmother was a somewhat eccentric recluse who spent much of her time immersed in genealogy and the seventeenth century. She’s the one who traced our family’s generations from present-day Georgia through the Carolinas to their arrival in Virginia. There – on a family vacation – she introduced me to our Jones ancestors.
With all she told me and showed me, she never observed that her own sons had followed the same careers as those forbearers. My dad was a clergyman turned professor, and his brother was a lawyer. I went my own way, becoming a self-taught engineer and car mechanic.
The school years had not been very good for me, with one failure after another. “You could get A’s,” my teachers told me, “if only you applied yourself.” If only it were that easy! I had no problem learning about the things that interested me on my own, but try as I might I could not do the meaningless assignments my teachers gave me. Eventually I just stopped trying.
I concluded that school was just something I could not do, and I counted myself lucky that people in the adult world valued me for my skills, and not my academic credentials. Still I never lost the feeling of inferiority I got from that high school failure.
Everything changed for me when I learned about my own autism in middle age. For the first time in my life, I had an explanation for all my earlier social failures At first, I only knew autism in the context of myself. That changed as I got involved in the autism community, and I devoured papers and articles on autism science. As my knowledge grew I realized the eccentricities of my father, my grandmother and my son were all manifestations of the same thing. My father’s detachment and inability to relate to other people were signs of autism. My grandmother’s withdrawal and her fixation on minutiae of history were signs as well. The more I learned, the more signs I saw.
More disturbingly, I came to understand that my cousins who did not speak – but who communed happily with plants and animals – were not the idiots my grandparents had made them out to be. Most were nonverbal autistic people. I felt ashamed at how my family had treated those cousins. Then I began reading of other people who voiced similar objections, and they were beginning to coalesce around an idea they called neurodiversity – the concept that some amount of neurological diversity was not only normal, it was essential to the health of our species. That squared well with the emerging realization that differences like autism, ADHD, and dyslexia have always been part of our genome.
People like me were called neurodiverse, or neurodivergent. I liked that notion, particularly when I realized how many of my relatives deserved the same appellation.
Seeing those threads of autism woven throughout my family tree, I began to wonder how far back they reached. From my vantage point of middle age, I could see my generation, my son’s generation, and my parents, grandparents and even great-grandparents generation. When I looked at all the aunts, uncles and cousins I realized there were a great many “unusual” people.
When I started counting, I came to suspect that at least ten percent of my family members showed strong signs of neurodiversity. When I looked at that thread stretching five generations I saw it pointing right back to Rowland Jones and my other ancestors of his generation. At first I thought the question was, were they neurodiverse too? However I quickly realized some had to be different, and the real question was which ones carried that distinction.
Today we know that autistic people have been drawn to both the church and the law for their logic, ritual, and routine. If my Jones ancestors were autistic, their career choices certainly made sense. The million-dollar question was, how might I find out?
I wish I could say I’ve found that answer but so far it remains elusive. All I can say is that there are clues but not proof. What I do know is that science suggests there were neurodiverse people at the founding of William & Mary. And if the evidence of my genes reaches back to Jones, my own ancestors were among them.
If that’s so, I asked myself, what does that say about me and my son, as compared to Rowland and Orlando? My ancestors were leaders in their community and key figures in the establishment of a great university. We grew up as social outcasts who could not graduate from high school, let alone gain admission to a prestigious college. Clearly something has changed. Either my generation got dumber and less capable, or society and school changed to exclude us. It’s probably no surprise for you to read that I prefer the second interpretation.
Last year we had a TEDx series at William & Mary and I gave a talk on Organic Education. In that lecture, I argued that we’d all benefit from more hands-on learning in the manner in which humans evolved. I also argued that we’d all benefit from a school environment that was more welcoming to neurodiverse people. Today that’s embodied in our campus neurodiversity initiative and courses.
When the college appointed me to help lead this effort, they named me the neurodiversity Scholar in Residence. That’s a title that’s hardly used in modern day education, but I am proud to be a present day scholar in residence in honor of my ancestor, who was one of the first to hold that title at this institution’s founding.
John Elder Robison
A repost from Psychology Today: https://www.psychologytoday.com/blog/my-life-aspergers/201509/knowledge-is-power-in-community-and-alone
I figured this out firsthand while spending time with Dr. Warrenetta Mann, one of my colleagues at The College of William & Mary. Warrenetta is the director of our university’s counseling center, and we’ve gotten to know each other through our shared commitment to make our campus friendlier for neurodiverse students.
That’s a subject that’s particularly important to me, as an autistic adult. College credentials are increasingly essential for good-paying employment, but college as it’s structured today is a tough place for students with autism and other neurodiverse conditions.
Warrenetta and I are of the same generation, which means we both grew up in the sixties in the segregated south. But that’s where the similarity ends. For I’m a large white male, and she is a petite black female. Given that disparity, you might expect I’d have been the one with all the confidence, power, and advantage — standing tall. You’d be wrong.
Warrenetta is educated and articulate. She presents herself as poised, confident, proud — all the things I could never feel myself. Where she earned a doctorate from a top college, I flunked out of high school in the tenth grade. She became a star in the rarefied airs of academia; I became an outlaw engineer for rock and roll bands. She could talk to anyone, but I could not even have a conversation with someone like her when I was 18 years old.
Those are some pretty striking differences. Yet many would dismiss them, saying they are just because I’m autistic and she’s not — as if that were a full and complete explanation. It’s not. If there is a simple answer, it would be that Warrenetta had a positive self-imageand the confidence to step forward, and I didn’t. That wasn’t a result of autism; it was a result of community support. In Warrenetta’s childhood, family and community stood behind her. In my life, there was no support from either.
Consider our childhoods, and how our respective communities treated us. As a black person in the south, Warrenetta was a target for racism wherever she went. There were colored water fountains and bathrooms throughout my childhood, with a few that remained into hers. Even with the passage of federal civil rights legislation, some clerks smiled as they declined to serve people of color. I saw those things in passing, but I was white, and they were not directed at me. I was puzzled, but wasn’t hurt by them. Her situation was very different.
A few years ago, if you had asked me, I’d have said I wasn’t much affected bydiscrimination. Now I know that’s not so. I may not have been targeted for my skin color, but I was singled out just the same — for my behavior. Kids looked at her and called her a n_____. They called me a retard.
It’s funny, how those words hit me at the time. When I heard racist talk about black people, I thought to myself that the speakers were building themselves up by knocking the black people down. Yet I heard the things people said about me, and I assumed they must be true. Why did I reject one set of hateful words and believe the other? I think it’s because my logical brain saw no connection between skin color and intelligence. But when people said I was stupid because I acted stupid, that made sense. I could not argue or dismiss that from my mind.
It took 50-some-odd years for understanding to dawn in me, but now I realize that both of us grew up with exclusion, and that’s painful whatever the reason. But that’s where our similar experiences diverged. For Warrenetta’s differences were visible, and therefore defensible. Mine were not.
Warrenetta and her parents — and others in the African-American community — easily made the same leap of reasoning I made as a child. Different skin color does not connote intellectual inferiority any more than different hair or eye color does. In the sixties black parents could explain that, and show their kids role models everywhere. There were heroes on a national level. There were leaders in the local churches. There were trailblazers in small business. And there were historical figures to admire. Plus, of course, family members to look up to.
With no knowledge of autism, there were no neurodiverse heroes anywhere in my childhood. With nothing to observe but my inexplicable and bizarre behavior, what might my parents have said? “Sure, son, you come from a long line of head bangers and poo-smearers. We got tossed out of school too!” There were no words to support a kid like me. And I knew from an early age that my parents were not losers like me — they were both college graduates.
Now we have widespread autism awareness, but neurodiverse kids still experience this same thing today. I was tormented for being invisibly different. At best, most other people didn’t want me around. At worst, they thought I belonged in a cage. Some of them even did their best to put me there. I may have been a white male but the drawbacks of my strange behavior cancelled out any advantage my race and sex might have conferred. I cringe when I hear of that happening in today’s enlightened and progressive schools.
No one had a helpful answer for the names I was called, because no one knew why I was called those things in the first place. My mother said the words weren’t true, but in the absence of any explanation, that only convinced me of the opposite. That left me to grow up alone, believing I was inferior. What else could I conclude? I’d internalized what people said to me, even as Warrenetta rejected the vicious things that were said to her.
It took meeting her in middle age to open my eyes to that reality, and to make me think about what we can do for a better tomorrow. I realized we autistics could learn a lot from the men and women who’ve fought for racial equality these past 50 years.
Collectively, those people helped build and sustain a community, and that led to self-confidence and pride — vital things I lacked. Warrenetta’s parents knew why she was being attacked, and they knew how to defend her. That — more than race — is the thing that set us apart. It’s a perfect example of that old adage; knowledge is power. In her case, knowledge made it possible to build a defense against hatred, and the self-confidence that engendered carried her into adulthood. Lack of the same thing crippled me, and it still hurts thousands of other autistic people.
But we can change that, and I want to start that process right now. To do that, we need more autistic adults to step forward, and own their [our] autism. They [we] can speak about autistic life from a first-person perspective, both good and bad. Sure, autism has disabled us in some ways. But many of us are gifted too. The tragedy is how unappreciated those gifts are in today’s world. It’s high time that changed, and there are a few things that will help make that happen . . .
For one thing, more parents need to own the autism in their kids. So many today deny that obvious truth. My own parents could not own it, because they did not know what autism was. Yet I remember my dad — he died 10 years ago — and many of my cousins and ancestors, and I see strong signs of the spectrum in lots of them. But none of us knew it for what it was. That left us in a tragic situation — their ignorance and shame led them to use the same corrosive language that I encountered on the street. My family actually chased me away from my autistic relatives “Stay away from your cousin, son. He’s not right in the head and he can turn on you like a rabid dog. He’s just a idiot.” The adults seemed to do everything they could to distance themselves — and me — from our “defective” cousins. “All families have them,” my grandmother said, “But we don’t talk about them.”
There are some families where autism appears spontaneously — seemingly out of nowhere. Geneticists call those de novo cases. Some parents believe those are the majority of autism cases, but the evidence shows that most autism runs in families, and an autistic child is far more likely to have autistic or otherwise neurodiverse parents, siblings, or relatives than the current 1-in-68 autism statistics would suggest. Indeed, some of the earliest descriptions of autism — from the Vienna clinic where Hans Asperger got his start in the 1930s — describe how they often saw traits of autism in parents and grandparents.
Another way to understand this is to realize autism was a “communal difference” in those families, not a child’s individual disease. As such, it presented differently in each family member (invisibly in some) and conferred both gift and challenge. Indeed, the Vienna clinicians remarked on the creativity, technical prowess, and — at the same time — eccentricity and even aloofness of parents whose children were in their clinic. In recent decades we’ve made a major mistake by treating autistic people as if we stood alone, when in fact we seldom did [do.]
Today I’m sure my father had Asperger’s, but like me he did his very best to hide any differences and blend in to survive. It was all either of us knew how to do, and we never spoke of it, even after my own diagnosis in the late 1990s. Now I realize that my dad grew up with the same poor self-image as me, despite being a star in school and graduating from an Ivy League college. Those things couldn’t change the isolation both of us felt.
Only community can do that, and community is something we autistic people must build one person at a time. It’s going to take courage. We’ve got to let go of the victim mindset, and stop talking about autism as “something bad someone done to us or our kids.” Those of us on the spectrum must accept who and what we are, and recognize that the majority of us are this way naturally. Most of us are not the product of chemical poisoning or Big Pharma Conspiracy. If we’re successful, we owe it to younger autistics to show them how our differences facilitated good outcomes. At the same time, we must be realistic in describing our very real challenges and what we did about them.
We should continue the fight for therapies and treatments to relieve the many ways we suffer and experience disability, but at the same time we must accept that autistic people are here to stay and society should embrace that. Autistic impairment is very real in some of us, and we have a duty to help those people live their best possible lives. At the same time we must honor those autistics, who only wish for acceptance, or even to be left alone.
The more autistic adults step forward, the more role models young people on the spectrum will have. The more adults speak out, the easier it will be for others of all ages to own their autism and the autism of their kids. When that happens being autistic will become something that just “is” — a mix of gift and disability; neither good nor bad — and not a badge of shame.
I dream of a day when young people on the spectrum can look at autistic adults and see role models and heroes. When that happens they will know the hateful words they heard as kids were lies, and they will stand tall and proud.
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 neurodiversity scholar in residence at The College of William & Mary, and 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) in Springfield, MA.
The opinions expressed here are his own, with particular thanks to W&M colleagues Warrenetta Mann, Karin Wulf, Josh Burk, Janice Zeman, and Cheryl Dickter whose thoughts were twisted and blended into what you read here. There is no warranty expressed or implied in these words. While reading this essay may give you food for thought, actually printing and eating it will probably make you sick.
On this blog, members of the College Neurodiversity Working Group share ideas, information, and inspiration about what neurodiversity means for us and for our campus community.
Black and White and Degrees of Difference by Karin Wulf
Understanding and appreciating difference is fundamental to a healthy community. Varieties of diversity are as limitless as the number of people on the planet, but there are some that need to be called out and appreciated in a world where the privileges of race, gender, class, and sexuality are clear.
The College Neurodiversity Initiative seeks to make plain an obvious and yet underappreciated point: in a community where brainpower is common currency, there are many different ways of thinking, perceiving, and understanding. Brains are different. Those differences make for a rich and wonderful world, but some differences can be hard to live with—not inherently difficult, but difficult in the context of contemporary society.
In this blog space we’ll be considering, among other things, a range of perspectives on cognitive difference and disability.
What a pleasure for me, in this first post, to highlight our own Working Group Community Liaison, Renée Salas. As an author, speaker, and advocate, Renée shares her experiences as the autistic parent of two autistic kids and a third, neurotypical child. She is particularly focused on the educational needs of autistic people, and also on, as she says on her blog, http://srsalas.com, “what autistic people CAN do.”
In her first book, Black and White: A Colorful Look at Life on the Autism Spectrum, Renée describes her life as a child, as a college student, and as an adult raising a family with her neurotypical husband. “I wanted Black and White to tell a different story, a positive one. It had to be about life on the autism spectrum, not about the disorder itself.” Renée shares the challenges she faces, including sensory sensitivities, trying to anticipate the unexpected, and communicating across neurological differences. Mostly she simply explains what and how she thinks. She is writing for both neurotypicals, who may appreciate a guide to some of the basic issues faced by many (though not all) autistic people, as well as her fellow autistics. Renée doesn’t see her book as “a ‘how to’ guide or a book of solutions,” but as a “glimpse at the world through my eyes.” Glowing reviews from folks including well-known autistic writer Temple Grandin suggest that a wide audience finds Renée’s glimpses compelling.
Black and White is also powerful reminder of the ways that difference is experienced and construed. Each person’s perspective is very particular. Although we speak of neurotypicality and neurodiversity, and the current state of brain science tells us that neurotypicality means that some people’s brains are more alike than other people’s brains, the range of cultural as well as neurological diversity is astonishing. What is expected by one person in a particular context is utterly surprising, painful, or incapacitating to another.
Sometimes this is a matter of scale. I really dislike fluorescent lighting, which I find distracting and uncomfortable. My eyes don’t focus well in spaces that are exclusively lit by fluorescent bulbs, and I avoid those spaces as much as possible. I have a reading lamp on my desk at work to try and dilute the flicker and blue glare. For Renée, many different kinds of lighting are distracting and worse. The shimmer, shake and glare that emanates from horizontal blinds, for example, can quickly cause anxiety and nausea. I can work around my preference and discomfort, while Renée has to find ways around what is painful, even paralyzing.
Neurological difference is not always about a matter of degree; it’s about what is and is not accommodated. Both Renée and I have figured out how to work around, mostly, issues with light sensitivity. But what about issues that are harder to work around? Or places where the affected person doesn’t have the capacity or authority to change their environment? Disability can be created by the context in which one is trying to operate.
The title of Black and White is meant to invoke Renée’s logical approach, but also what she calls the autistic “unemotional facade” that many people mistake for a lack of feeling and emotion. Her next book is titled Grayscale. I am eager to read her further thoughts on difference, and so grateful that she is a key contributor to the College Neurodiversity Initiative.