Neurodiversity and Me at William & Mary

The College of William & Mary contains the oldest academic buildings in America

I’ve been asked a number of questions about neurodiversity.  Here are some of them, for consideration and discussion.

There doesn't seem to be a standard definition of neurodiversity; what exactly do you believe neurodiversity to be?

I believe neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.  This represents a new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.  That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure.  We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not exclusively the result of disease or injury. 

We are not sick.  We are different.

Natural neurodiversity confers gifts, disabilities, or most often, a combination of both.  Some people are mildly affected; others are touched with a heavy hand.  Neurodiverse people may be highly intelligent, intellectually disabled, or anything in between.  They can be male or female, short or tall.  We make up perhaps 10% of the human population, and we are everywhere.

Some of us - those at the upper end of the Asperger's spectrum, for example - are functional but eccentric, and gainfully employed.  Others - some Fragile X people being an example - are very severely disabled and live in group homes.  "Naturally occurring" does not mean gentle or easy; it can be anything at all.  The point of "naturally occurring" is this:  We are not freaks.  We are not "injured and in need of healing."  We are not artifacts of modern chemistry.  We just are.  We want to make our best lives, and move on without blame, shame, or recrimination.  

Look around you – statistics alone tell us there is at least one person with non-standard brain wiring in every decent-sized classroom.  And neurodiversity isn’t just for students.  Faculty and staff are just as likely to have different brains, especially in the sciences.

It’s important to point out that this is about accepting the reality of how people are, not ignoring or dismissing real disability.  Indeed, I think the two concepts go hand in hand.  Acceptance frees those of us who are different to live our lives without shame, while working to remediate disability has as its goal the best possible life quality.  I am a strong supporter of therapies to help people who suffer from autism's heavier hand, or who are put in danger by the way they are impacted.  I'm also a strong supporter of therapies for people who are less disabled but who still want help to succeed to their fullest.  Students at W&M are most likely to fall into this second group.   

My brother has really severe autism.  He can’t talk and can’t take care of himself.  Are neurodiversity people like you opposed to curing him?

Not exactly.  When you say “can we find a cure” I think you are asking the wrong question.  Let me draw an analogy.  When a fellow has one leg, and he wants to get around on his own, we don’t say, “He needs a cure.”  We say, “He needs help remediating his disability.”

He might end up with a prosthesis, or a cane, but he remains a guy with one leg.  Those tools help relieve his disability, which is most realistic help anyone could offer a person in that situation.  There might be times he wishes he had another leg, but it’s not reality, and speculation about a cure in that context is self-destructive and hurtful.  If you are that person, spending your days wishing for a new leg won't get you anywhere.  Spending the same time learning to walk with the prosthesis will get you mobile.  That does not make a wish for a new leg wrong, but it's not productive in light of current reality, especially given the available alternatives.

Naturally occurring autism is much the same.  It’s something we are born with and the older we get, the more it becomes interwoven with the fabric of our minds.  It’s not removable.   That’s why I say “cure” is the wrong word to use. 

No neurodiversity advocate in his right mind would oppose developing tools to remediate disability from autism.  I believe we have much to do, to develop therapies to help people like your brother live their best and most independent lives.  I am a strong supporter of that idea.  I just don’t call it a cure.

What exactly will the course you are teaching at William and Mary focus on?

Well, first of all, I should make clear that I am only one of the people teaching the course.  Josh Burk, Cheryl Dickter, Janice Zeaman of the Psychology Department; Karin Wulf from History; and Warrenetta Mann from the Counseling Center are all involved in teaching or shaping this class and the college’s neurodiversity initiative.

That said, I am the only openly neurodiverse person involved with the project (I have Asperger’s, a form of autism.)  I say “openly” because some people who are different aren’t aware of why that may be, and others who know prefer to say nothing.  I take pride in my differences but for many, neurological difference is a source of frustration or shame.   

That’s one of the things we’re going to talk about in the course.  How we feel about being different, and how we feel about others who are (or are not) different.  Can we help people feel better about themselves and others?  I hope so.

I did not learn about my own autism until I was forty years old, and there are thousands of other middle age people who still have no idea they are touched by autism, Asperger’s, PDD-NOS, ADHD, or other neurodiverse conditions.  Today most people are diagnosed in childhood, but if you grew up 30+ years ago, we did not have the knowledge of those conditions so it never happened.

We want to increase knowledge of neurological diversity just as we have increased knowledge of other kinds of diversity.  The difference is, neurological diversity is usually invisible.  But it’s important to recognize because neurodiverse people at W&M are likely to have a mix of great gifts alongside significant disabilities.  They may be our brightest stars and our most challenged students – all at the same time.    We want everyone to be their best and that means recognizing and minimizing traits of disability while developing strengths. 

To do that, we must first understand our differences and then determine how best to proceed.  We hope this first course will open the door – provide an overview of difference, if you will – and help people who are neurodiverse while also enlightening people who want to work with or help the neurodiverse population.

Beyond teaching the course, what do you hope to achieve at William and Mary?

College can be a scary and challenging place for anyone.  Those challenges can feel a thousand times greater to some neurodiverse students.  I’d like to help those students feel relaxed, safe, and welcome here.  I’d like to explore what they may benefit from by way of accommodations, and how the college can help.

For example, some students have talked about “quiet space;” rooms with soft lighting and low noise levels.  Other students may benefit from social skills courses.  If past experience is a guide, accommodations we develop for neurodiverse students may prove very attractive to a large part of our student body.  This neurodiversity initiative might actually lead the way to making W&M a better place for everyone.

I’d like to see the college create a culture where people are proud to be different, speak about difference, and our individual uniqueness is honored and encouraged. 

I hope William and Mary can take the lead in teaching people who want to work with neurodiverse people in their adult careers – whether those careers are in psychology, teaching, medicine, law, or government.

As a school for smart, high achieving people, it’s right up our alley . . . In his 1944 doctoral dissertation, Hans Asperger wrote: “It seems that for success in science or art a dash of autism is essential.”  Today many people associate Asperger syndrome – a form of autism – with eccentric genius.  Think Sheldon Cooper and The Big Bang Theory.  The smarter you are, the more eccentric you are likely to be.  As one of the top colleges in America, William and Mary is full of exceptionally smart people and I suspect a great many have Dr. Asperger’s “dash of autism.”  Let’s embrace it, and see where it leads!

William and Mary has very high admission standards. Many neurodiverse people have trouble graduating high school, let alone getting into college.  How do you reconcile those things?

It’s true that people with developmental differences struggle more in school, and have lower high school graduation rates.  It’s also true that only the very best students tend to make the grade for admission at the very best colleges.  Here’s an interesting fact to ponder, in light of those facts:

One way neurological differences manifest themselves is by giving people bigger variations in their different kinds of intelligence (mathematical, logical, emotional, etc.)  While the conversation often revolves around our weakest intelligences (because that’s where we need help) it’s also true that we have our peaks.  And if our peaks are higher than those of the “average person” we can be significantly smarter in our areas of excellence.

That does not mean neurodiverse people are smarter as a group - we are not - but it does mean the smartest neurodiverse people will have peak intelligences (in our narrow bands of interest) at the very top of the human range.  The price for that, of course, is the offsetting group at the very bottom of the functional intelligence range.  They too are neurodiverse, but there intellectual limitations render them invisible much of the time.  

If you were a college recruiter, looking for the smartest people in this world, a significant percentage of them would be neurodiverse.  Any college that wants a smarter student body would do well to cultivate neurodiverse students.

Smart people with well rounded educations and a drive to help others are a powerful force. 

At the same time, William and Mary is beginning to recognize that some students who might otherwise be perfect fits here have trouble getting in because of their neurodiversity.  We are looking at how we might work with public schools in Virginia, and the community college system, to afford future students a more equal chance for admission.  Every good college will face this dilemma; William and Mary is at the forefront, charting a course for others to follow.

What if my brother was damaged by vaccine?

The idea that mercury in vaccines causes autism has been discredited in many studies.  Thiomerosal (a mercury preservative) was removed from vaccine with no decrease in prevalence rates.  But does that mean vaccines are 100% safe?  Vaccines are complex and their interaction in the body is not fully understood.  While their public health benefits are undeniable, there is still a possibility that some people are susceptible to injury following their use.

Do some of those people develop symptoms that look like autism?  I don’t know, but concede the possibility.  I also recognize that ingestion of other chemicals – lead, for example – can poison us and create autism-like symptoms that may or may not be reversible.

The kind of autism I am touched by has been constant my whole life, and it has a consistent presentation in three generations of my family.  I see other families where there is no history of autism, and a child who is developing normally regresses into a state of total disability in late toddlerhood.  How does that happen?  It's a big concern to me, and it makes me wonder how many different conditions we are dealing with under the ASD umbrella.  Clearly, a family with a child who regressed would see things very differently from a family like mine.

Wherever your connection to the autism spectrum lies I urge you to respect other points of view even when they differ greatly from your own, as experiences differ too.  That' to me is the heart of neurodiversity and acceptance.

I support research into environmental factors that may injure us and leave us with symptoms of severe autism.  To the extent that damage can be prevented or fixed I support that too, but I recognize it’s a complex question.  So far – despite some people’s belief to the contrary – hard proven answers have eluded us.

Autism that’s a result of chemical poisoning is a very different thing from the condition I grew up with; one that I shared with my late father and now-adult son.

Injuries can also produce some symptoms of autism or other neurodiverse conditions.  While those changes may not be reversible once they have happened we can work toward preventing the injuries in the first place.  The first step is becoming aware. The recent focus on head injuries in sports is a good example of a place where awareness is emerging.

I think we will see significant changes in college sports in the next decade as a result of awareness.  We may see revolutionary changes in our diets thanks to growing environmental awareness.  Being born different is one thing; crippling ourselves through preventable injury or ingestion of chemicals is something else entirely.  No one wants to accept that.

If autism is a natural variation, is it Humanity 2.0?

Attractive as that idea sounds to some, it's not what the science is showing us.  Instead, science is suggesting that some level of autism has always existed in our population.  It's a stable genetic variation.  That does not mean it's better; just different.  It suggests that autism serves some evolutionary purpose whose meaning may not be fully understood.

Some people with autism are uniquely skilled at solving certain problems.  That makes us different, not better.  We complement neurotypical humanity.  We are probably not destined to replace it.  It my opinion, being equal is OK.  We don't have to be better.

Consider this:  For every person like me - who lives independently with autism, there are several more my age who struggle to stay afloat.  The hard truth is, most people with autism and other neurodiverse conditions are more disabled than gifted in modern society.  It's great to embrace our gifts but we have a duty to also recognize how difference limits us as we work to relieve those burdens.

The points I make above were all supported by the Brugha study which examined 7,500 adult heads of household in England last year.  You can find a summary and link in the IACC 2012 Strategic Plan for Autism.

One more thing - Remember that evolution has no heart.  A trait that causes tremendous suffering may persist in our genome if it helps perpetrate the species in some way.  Recognition that a trait is part of us does not mean we should passively accept any suffering it causes.

At what age were you diagnosed with Asperger syndrome?

I was diagnosed in the late 1990s, when I was 40 years old.  I describe the experience in the chapter “A Diagnosis at Forty,” in my book Look Me in the Eye.  Asperger syndrome was not part of the lexicon of American mental health until the American Psychiatric Association published DSM IV in 1994.   When I was a kid, teachers just assumed I was dumb or lazy.  Today we hope they would know better, and sometimes, they do.

The entire constellation of special needs we see today was essentially unknown when I was a child.  Asperger’s, ADHD, dyslexia . . . those conditions and more have probably been around forever but it’s just recently that we have begun to detect them in children and offer help in place of criticism or discipline.

What more could William and Mary, and colleges in general, do to promote neurodiversity?

I think that remains to be seen, and developed.  With the announcement of the Neurodiversity Initiative and the development of this first course we have started down a long road; one with no defined endpoint. 

As psychiatrists look back at the great minds of history they see one example after another of neurodiversity.  If many of the greatest thinkers of recorded history were neurodiverse, would it not make sense to do all we can to encourage the neurodiverse thinkers of tomorrow?

A neurodiverse college is a smarter college, and with all the problems facing our world today, we need all the smarts we can get.

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 and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.