Sunday, October 20, 2013

Neurodiversity and Me - a few questions from William & Mary students


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.

22 comments:

Kathy Ostergaard said...

Having just seen you and David Finch in Maine in the same week, I'm feeling very energized by your message of hope. Very glad to see you getting the message out there about neurodiversity, and what universities such as William & Mary can do to encourage kids to share their gifts with the world.

Nancy Peske said...

In your work with the college students, do organizational issues come up? My 9th grade son is learning to use an iPad but is not getting specific training. And training and learning take time, so teachers need to be open to how difficult the transition can be for a teen with SPD, autism, ADHD, etc. I'm just curious as to whether this is an issue that has come up in your work, and your take on it. Thank you for making a difference for our kids!

John Elder Robison said...

Nancy, we are currently talking about how we might use the UNSTUCK curriculum developed for kids to help college students. They call it executive functioning.

T.Rob Wyatt said...

John, thanks for posting. The last question about what colleges can do seems to me to require an ongoing conversation. That W&M reached out to you to participate in that conversation is wonderful. That you shared it with us, even more so. Whatever the answer is, this is how we progress toward it. I also loved how you approached the question of a cure. That will give me another tool to use when I'm asked similar questions since I haven't been able to articulate it as well.

tlpg said...

John, for what it's worth that hate bucket Jonathan Mitchell has had a rant about this entry on his blog.

John Elder Robison said...

I tried to engage John in a constructive dialogue but all he seemed able to do was criticize. Criticism in the absence of any constructive alternative serves no purpose. I gave up on him a while back.

natalie seitz said...

Hi John-this blog post is very timely for my family as my son is in his freshman year of college, something that we often didn't think possible due to his struggles with Aspergers. He received good support in HS, but also developed skills that he now that he is on his own is utilizing-slowly. I think teachers, professors and administrators are becoming more aware-and are figuring out ways how to tap the vast potential of students like my son. It's a slow process, but I see growth happening. The area I am disappointed in is peers on college campuses. That is where I would like to see more effort put. With that in mind-I think a book of yours would be the perfect summer reading assignment for most college students. I have suggested it to my sons colleges' Disability Services Director. His school has one of the top Psychology departments in the country, but even outside of that department reading your book could enlighten many a kid on how they might understand and better connect with a neurotypical person.

BTW-if they choose your book they usually invite the author early in the semester to discuss the book-is this something that you'd consider?

John Elder Robison said...

Natalie, I do quite a bit of speaking at colleges and many have adopted my books just as you suggest. They can set up a visit with my lecture agents at Lavin

Michael Forbes Wilcox said...

A wonderful post, John. I'm glad you are being given an opportunity to share your wisdom, insight, and open-minded style with students who are eager to learn.

I look forward to following your experience here and encourage you to share more as you go along. We all benefit from your wonderful ability to concisely relate what you have learned over the past few years. I know it's helpful to me, and I share your work widely.

Amy Sequenzia said...

Mr. Robinson, I had hopes that you had finally opened up to the neurodiversity movement when I read the first lines of your post. But soon enough I was awaken from that illusion.
You excluded people: "they are not part of our community", when in reality people who have a different way of processing things, through chemical side effects or genetics, are welcome to the movement if they identify as neurodivergent.
Then you go for the grading system. Aspies are "high functioning" and go to college, displaying quirkiness and with jobs prospects. The "low functioning" need understanding and more therapies. They live in group homes and "suffer" with disabilities that need to be fixed or made "better".
I am, according to your view, the latter. Amazingly, i only suffer when oppression is directed at me, disrespect and murder happen to my people. I am disabled and proud because I see disability as a societal construct. I don't need "therapies" to live fully. I need the majority to accommodate my needs because I am only very "affected" because the majority decided what is "normal" and acceptable.
You say:
"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."

How do you know that? There is a lot of propaganda about "tragic" autistics, showing things that are not really autism (seizures, GI issues). But we don't really know how each autistic person's life really is.

A correction: a person is neurodivergent, not neurodiverse.

You are against a cure but you are also part of an organization that raises a lot of money for cures, and worst, for the elimination of autism through prenatal tests that would lead to abortions based on the possibility of an autistic child being born.
Or do you mean only people like me, non-speaking, very disabled?

John Elder Robison said...

Amy, I thank you for your thoughts.

You are absolutely right to point out that my "not part of our community" statement when referring to people who suffered brain injuries or chemical poisioning makes it sound like I feel they are not part of the neurodiverse community. That's not what I meant. I meant to separate people who were injured (who might reasonably hope for a cure of the injury) from people who were born a particular way (who are what we are)

I deleted the statement as its sound is not what I meant and I thank you for bringing that to my attention.

I'm not sure if I follow your comments on the "grading system." I make the point that the spectrum is broad and people have differing abilities. I don't say people "need to be made better;" I say we have a duty as a society to develop ways to remediate severe disability and make those tools available to anyone who wants them. What's wrong with that?

You question the basis for my suggestion that people with autism are more disabled than gifted. I base that statement on Brugha and a number of other studies that have looked at adults and screened to find those with autism. The portion of the population that scores in the ASD range also scores worse than the general population by most demographic measures. The ASD community has higher than NT rates of unemployment/institutionalization and lower rates of home ownership/wealth/income etc. I didn't point that out to be offensive or judgmental but rather as a problem to be solved.

OK on the "neurodivergent"

As to your final point, which I assume refers to Autism Speaks. I am not a "part" of Autism Speaks. I have nothing to do with their governance, policies, ads, etc. I am a member of their Science Board where I vote to support research to benefit our community. That's it.

Amy Sequenzia said...

Good to know you are meaning inclusion.
To me, disability does not need to be remediate. I think it is a society's failure to include all, to give everyone equal opportunities. I am non speaking and I can't do anything without help. But I can think. Still, I ma seen as less because I am so far away from what the majority defined as "normal". Imagine if the majority were like me and speaking people were forced to shut up: they would need help with that. Then their "disability would also be a society's construct, define by a different majority. I agree we need more accommodations but unless we are harming others or ourselves, I don't see the need for remediate disabilities. I never heard of the study you mention, but underemployment has to do with rights not how disabled people are. If you vote for the science board at autism speaks you vote for the research of genetic tests that seek to prevent autistics like us from being born

John Elder Robison said...

Amy, I have no issue with you being just as you are. But at the same time, I hear from people who very much want help remediating their issues. So you may not see a need to develop ways to remediate disability but others do.

As for why autistic people are underemployed or unemployed - I did not offer reasons why; I just presented the finding as a societal challenge, which it is.

Finally, you say: "If you vote for the science board at autism speaks you vote for the research of genetic tests that seek to prevent autistics like us from being born" That statement is totally wrong. At no time have I ever voted for such a thing, or been asked to do so.

unstrangemind said...

I am Autistic and I have been institutionalized, unemployed, spent much of my adult life homeless and impoverished (although I have hopes that my fortunes will change now that I am writing books.)

And I agree with Amy: these disabling life conditions are not due to my autism; they are due to people not being willing to accommodate and accept me. I am a hard worker and very productive but no employer has wanted to keep me longer than a week or two because I make co-workers and clients uncomfortable with my "strangeness." If people accepted others who are different, then I would not have struggled so much with unemployment and poverty because people would recognize that my strangeness is not dangerous or harmful and I am a very good and conscientious worker.

Amy Sequenzia said...

yes, we do disagree.

You said you are part of the Science Board and that you vote to support research (to benefit our community). But the research that Autism Speaks is supporting is research to find a gene for Autism and develop a test that will allow for abortions, much like what happens to Down Syndrome. No benefits for the Autistic Community.I really don't know of any other research that they support. I do know that there is a lot of talk about funding research to cure the "ailments" that come with autism. But those are not autism,. My friend and many in her family, not autistics, have severe GI issues. Really severe. Cure those, I support that. Epilepsy is not autism and I wish it could be cured. So, if there is any research that Autism Speaks supports that really helps autistics, I think they should advertise. But not the things I mention because those are not autism.

John Elder Robison said...

Amy, I am not going to go over the research Autism Speaks funds line by line. It's on the website for all to see. There is no research "to find a gene for autism and develop a test that allows for abortions."

Show me that research on their site, either past or present. It's not there.

You say you don't know what other research they support. The list is long, and published online.

Amy Sequenzia said...

I know of people who are autistics and do want a cure for autism. That's their choice. I want to say that many of the things they wish were "cured" are not really autism and many are because of how they are treated. But still their choice. But the conversation today is that we need a cure, the comparison with Aids, Diabetes and Cancer, the tragedy. I think we should be using language that doesn't immediately pathologize autism. Remediate invokes "let's find something to make it better" when we could be using accommodate, educate, accept, offer services, even some treatment would be acceptable to me if it involves making someone less prone to become violent (although it usually means that there is a trigger and the trigger is the thing that should be eliminated. and never, ever tell people to stop doing what soothes them in order to "control behavior"). Words matter to me.

Amy Sequenzia said...

I looked at the website and I saw that there are lots of articles about genetic research. I would prefer to see the money going to help families that are here today. And to make services better for the ones who will come. Genetic researches are to find a cure or a "cause". Since there is no cure, the focus will be on a cause, and then to find a way to prevent autism. The way to prevent autism is by preventing autistics from being born. I am not a scientist but I don't see any other reason for supporting genetic research into something AS calls "disease", or "disorder" other than the two things I mentioned. There is something about early intervention but I would probably think it is heavy handed, like ABA to stop the child from stimming or forcing eye contact, things I think are harmful.
As a typer, I will stop now. It is tiring to type. I will check back later or tomorrow. this is the kind of accommodation I need to fully participate.

LM R said...

Reading this blog could not have come at a better time for. us. My ADHD son is graduating trom a highly competive private school in dc metro area. This high school does not provide any accomdations for my son except extended time during midterms and finals. Some teachers were more accepting to extended time than others which consequently affected my son from choosing a more rigorous course selection throughout highschool.
He has great grades 3.8, and a 30 on his ACT. Our concern is exactly what you mentioned in your writing that schools like William and Mary ( his first choice) are looking for academic rigor first and foremost. When I asked our experienced high school college counselor, if my son should send William and 'Mary an impact statement about his disability the way Chapel Hill recommended on their website. His answer was no. He said. My son had a great transcript and would have a better chance getting in on his own merit than by disclosing his disability. My question is do you think that highly selective schools like William and Mary, at this point in life are ready yet to have an open minded fair selection process for kids that disclose their disabilities during the admissions process? Thank you in advance for your reply.

LM R said...
This comment has been removed by the author.
LM R said...

Good Afternoon, I received an e mail today saying my message I you was posted. However, I was not sure where you send a reply, I am new at posting on blogs so not sure about the protocol.

John Elder Robison said...

LM R, I spoke to the director of the College's counseling center, and this is what she said:

Responses to college application essays should reflect the most authentic representation of that student. For some students managing their disability is a huge part of who they are everyday. For others it may be virtually invisible for the most part. One of the most important factors in college success is fit. Fit involves being able to be who you really are, while choosing to change and grow in ways that are important for you. If a student feels that they either have to amplify or hide a part of themselves to go to a particular school, then I would encourage them to think about whether that school is the right fit for them. Be who you are and the right place for you will embrace all of who you are. Our admissions team reads a ton of applications, including some which reveal intensely personal struggles and challenges. Some get offers and some don't. I would like to believe that decision has more to do with the other things that student has to offer in addition to their disability status that makes all of the difference.

I think she makes a very good point. You need to think about what role ADHD plays in his life, and whether it bears mentioning.

Best wishes
John