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Neurodiversity vs. the Self-Advocate Agenda

  • Posted on August 21, 2011 at 5:59 AM

Every individual has an agenda.  Every movement has an agenda.  Words and ideas do not have agendas, though they may communicate the agendas of those who use them.

Neurodiversity is not an agenda.  It’s an idea.  Parsing the root words, the idea of neurodiversity is that human beings are neurologically diverse.  When considering the history behind acknowledgements of diversity, it’s apparent that such an acknowledgement is usually accompanied by a desire for tolerance, acceptance, inclusion, and accommodation for the diverse nature of human existence.  The word neurodiversity, essentially, speaks for itself:  human beings are neurologically diverse, and human beings deserve to be tolerated, accepted, included and accommodated in their neurological diversities.

There is nothing inherent in the word neurodiversity that says it’s strictly (or even predominantly) about autism.  There is nothing inherent in the word neurodiversity that says it’s solely used by or for autistics.  There is nothing inherent in the word neurodiversity that creates an us/them dynamic with the autistics being “us” and everyone else being the unwanted “them.”

But a word is not an active participant in human debates.  It’s a tool.  Any tool can be misused and the word neurodiversity has been used to further the agendas of individuals and groups within the great autistic population.  Is this a misuse of the word neurodiversity?  Well, that’s a matter of on-going debate.

I believe the answer lies in how the word is used.  If, as Socrates said in a comment to KWombles post, “Neurodiversity, is all about us, not you,” then I would say, yes, neurodiversity is being misused.  Diversity isn’t an us/them paradigm; diversity—whether it’s neurodiversity or racial diversity or cultural diversity or any other kind of diversity—is about all of us.  If it’s not, then it’s not diversity.

It’s the difference between Martin Luther King, Jr. and Malcolm X.  One had a dream about black children and white children playing together.  The other considered black people superior to white people and wanted to increase the separation between them.

The origins of neurodiversity are not hateful, separatist, or superior.  Neurodiversity originated from a hope for the tolerance, acceptance, inclusion, and accommodation of people with differences in their neurological wiring.  And, yes, autism is a big, big part of that.  Autistic advocates are special, because—if their primary adversaries were right—they shouldn’t exist at all.  If autism really did steal souls and the like, autistics wouldn’t be able to advocate for themselves.  They can and they do, and that’s great.

BUT not all self-advocacy is representative of neurodiversity.  Anytime an autistic self-advocate ridicules neurotypicals for being neurotypical, they are betraying the ideals of neurodiversity.  Anytime an autistic self-advocate excludes someone with a different neurological difference, they are betraying the ideals of neurodiversity.  Anytime an autistic self-advocate makes an us/them argument and claims he or she speaks on behalf of neurodiversity, they are misusing neurodiversity.

This doesn’t make neurodiversity a bad thing.  It doesn’t even, necessarily, make the self-advocate anti-diversity.  It means we’re human.  We make mistakes.  Sometimes those mistakes are intentional, sometimes they’re not.  Ideals are just that—ideal.  That means, unfortunately, that they’re not attainable without a lot of hard work, self-reflection, and the occasional paradigm shift.  The ideals of neurodiversity can be a work-in-progress inside each and every one of us, but it may never be wholly achieved in any of us.  We can open ourselves up to being open to people who are wired differently than we are.  It’s not easy, but we can do it.  It’s a choice.

Related Links:

Shift Journal


Autism Jabberwocky

Autism & Oughtisms

Neurodiversity: A Symposium

Just Be Yourself

  • Posted on January 7, 2011 at 10:56 AM

I remember hearing those words a lot as a child.  “Just be yourself.”  I would hear those words when we moved and I had to make new friends.  I heard those words again when I started taking interest in boys that went beyond simple playmates.  I heard those words yet again when I wanted to learn the “right” way to write.  “Just be yourself.”

When it comes to raising my own kids, it seems our society finds those words to be out of place.  At Planet Outreach-ASD, Jean wrote:

It shouldn’t even occur to me to want to change his behaviour just because it makes me uncomfortable, and because I want him to be more like other kids.

It’s actually deeply disrespectful of who he is.

I agree with Jean that it’s deeply disrespectful to ask our children with autism to change simply to conform to society’s expectations.  Yet that is the overwhelming message:  change, conform, catch up.

Further reflection makes me wonder:  Is there anyone who is allowed to just be themselves? 

I know as a child, there were many ways I was forced to conform.  There were other ways I refused to conform.  There were still other ways I could not conform.  This hasn’t changed since I’ve become an adult.  And it’s more than my own version of atypicality. 

My step-son, who is a typically developing teen, faces enormous pressure to conform.  He expects criticism, yet he still doesn’t understand that criticism.  He wants to rebel against standards, but is bothered when people look at him more than they look at others.

“Just be yourself.”  It’s something we say, but how often do we really mean it?  How many people really, truly extend that courtesy to others?

If we really believed in that trite little saying, would so many in our society see autism as something so dangerous?  If we, as a society, believed in allowing people to just be themselves, would we fear the diversity that abounds?

Just by yourself.  And let others do the same.

How much would change for the better if we all did?

Bullying (Part 7): Bullying Differences – The Problem

  • Posted on November 8, 2010 at 7:13 PM

One of the things that spurred my series on bullying—before the news decided that bullying was a hot issue and before I realized October was Bullying Awareness month—was a post written by Clay.

The post is about some of the challenges that autistic adults face in the working world, specifically some of the challenges Clay has faced as a working adult on the spectrum.  Among those challenges is workplace bullying and harassment.  In the comments, he said:

It does take a lot of inner strength to persevere against those who would ‘take you down’, just for the hell of it.

My response was:

For some, I’m sure it’s accurate to say they would “take you down, just for the hell of it.” For many, it is a coping mechanism. People they don’t understand seem elevated—the mystery itself is intolerable—so, they do what they can to depreciate that person, because they think that makes the person understandable. I’m not saying it’s logical or it makes sense, but that’s the way sociologists and psychologists describe the behavior. Of course, as someone who was picked on throughout childhood, I never found their feelings of inferiority very consoling, even in retrospect. But what I do take from that is that it is important to share knowledge to change behavior—if people who are different could still be different, but also be more understandable, that would presumably help those people to cope with that difference without resorting to physical or emotional violence.

Clay said:

I thought it was just for the hell of it, but now I think I want to know more about that coping mechanism thing. Sometimes, I had thought that some people were jealous, but couldn’t understand why. Please, make this a topic for your blog.

I went the long way around to get back to this, but I haven’t forgotten.

Common victims of bullying in the adult world are those who are different, particularly those who are different in a way that seems to make them less successful by social standards.  This measurement of success may be based on career goals, financial means, appearance, or just about any other standard.  Often the disadvantage of being bullied is even greater than the disadvantage(s) that hamper success; meaning that the bullying hampers success even more than the difference.

As is true for children, adults bully for two basic reasons:  1) because they enjoy it, and/or 2) as a coping mechanism.  In regards to bullying as a coping mechanism, some do it because they are being bullied (this is often true of bullying that pervades hierarchical organizations), but they may be coping with something else—such as prejudice, fear and misunderstanding. 

As I suggested to Clay, bullies within an organization or system who are bullying someone at the same level as them because of perceived differences may do so just “for the hell of it,” because they enjoy hurting others or enjoy the feeling of having power over others.  This enjoyment is both a human failing and a culturally reinforced trait.

However, that is not the only reason adults bully.  They also do so in order to cope with the sudden emergence of a foreign element in their environment.  Whether the difference is racial, gender, neurological, intellectual or ability, the bullies perceive the different individual as a threat (at least, on an instinctual level), and they respond with physical, emotional or verbal violence.  I’ve read theories (though I don’t know how strong the evidence that supports these theories are) that if these bullies were somehow de-sensitized to the differences, then they would not respond to those differences by bullying.

In short, opening up an organization to diversity creates an environment ripe for bullying; but by training individuals on diversity, equipping them to cope with and get past their discomfort with differences, and integrating diversity into the organizational system, the organization creates an environment ripe for mutual success.  Responsible businesses are pursuing this approach, often after failed attempts to open their organizations up to diversity without an effective means of transition.

Diversity training is often derided, but it is most often derided by people who falsely believe they work in a homogenous environment and are entitled to continue to work in their homogenous environment.  The foreign elements are supposed to conform to the environment or leave.

And that’s a problem, because diversity is far more real than the myth of homogeneity.  But homogeneity is reinforced by bullying.  The greater demand for fair workplaces without the proper training to make fair workplaces possible, the more bullying we’re likely to see.

I do recommend you read Clay’s post.  I also recommend you read this example of workplace bullying.  The bullying is very real.  It’s not something you just grow out of.

Should We Label Characters?

  • Posted on September 25, 2010 at 12:09 AM

I recently watched A Wrinkle in Time, a movie based on Madeleine L’Engle’s book of the same name.  Watching this movie brought back memories of my childhood, when I fell in love with L’Engle’s characters.  I remember finding in Meg a character sufficiently off-beat and unsure that I could truly identify with her—yet also courageous and powerful enough that I could look up to her and aspire to do what she did.  It was something of a pivotal moment for me, realizing that however different I seemed from my peers there was someone, somewhere who understood well enough to create a character that resonated so perfectly with me.

Don’t get me wrong.  I love stories and I delve into them heart and soul.  I loved reading about the adventures of Lucy and her siblings in the Chronicles of Narnia or Bilbo and Frodo in The Lord of the Rings, among many, many others.  I live and breathe these stories with a sense of reality that sometimes intrudes on the real world.  These stories are why I became a writer.  I hope to write stories that captivate people in a similar way, providing them with an enriching escape that helps them return to the real world better people for the experience of it.

But as much as I would attach myself to these characters I didn’t identify with them the way I identified with Meg.  I’ve read hundreds of books and seen hundreds of movies.  I’ve watched a few television shows in their entireties.  Often this is a form of escape—not so much to get away from my life, but to get away from my sense of reality.  But in all these stories there are so few that resonate with me the way Madeleine L’Engle’s stories have done. 

So many characters seemed just a little too connected with their world—whatever world that happened to be.  Even the outsiders (God, I love outsiders!) fit in just a little too well.  But then there’s Meg.  She doesn’t fit.  Even when, as an adult, she merges, she doesn’t really fit.  She’s different.  And, at first, she’s uncomfortable being different.  But she grows into herself, into her differences.  That’s something I could identify with and aspire to long before I had any clue of the nature of my differences.

There’s a temptation among some people I admire to attribute neurotypes to characters and historical persons.  As much as I respect their desire to do so, I think that such labels may be a little bit misguided.  In the past, I’ve watched Bones and saw how Aspie-ish Dr. Brennan is.  And maybe she is.  Maybe, whether her creator intended it or not, Dr. Brennan could be labeled an Aspie.  Maybe, whether L’Engle intended it or not, Meg could be labeled an Aspie.  Charles Wallace certainly has some rather pronounced traits that suggest an autism spectrum neurotype.

As tempting as using such labels is, I feel that maybe we should resist the temptation.  Maybe the label is not the point.  Maybe it’s not necessary.

Human diversity is a vast thing that encapsulates each and every one of us.  Neurological diversity is a vast thing that encapsulates each and every one of us.  While our cultures and societies may try to cut diversities up into segments—some being desirable and valued and others being unfortunate and unworthy—diversity doesn’t really work that way.

Characters like Meg and Dr. Brennan help their audiences see that people really are different, and that those differences can be a source of a character’s strengths even as they represent weaknesses.  Balancing strengths and weaknesses is actually something of a rule in writing, because it more accurately reflects human nature than flawless characters or pure villains do.

And maybe that’s enough.  Maybe it’s enough that we recognize that people—and the characters patterned after people—are different, each and every one of us.  Maybe we don’t need a label to summarize those differences so much as we need a willingness to attach ourselves to the others that surround us.

The True Meaning of Diversity

  • Posted on February 20, 2010 at 3:18 AM

“The true meaning of valuing diversity is to respect and enjoy a wide range of cultural and individual differences, thereby including everybody,” (The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 381).

Diversity goes beyond recognizing that we are different in measurable ways.  Diversity goes beyond tolerance.  Diversity goes beyond offering assistance to excluded individuals.  Diversity is about inclusion.

In some sense, I have ignored those diagnosed with Asperger’s who object to being lumped into the same diagnostic category as my children.  Their words, their behavior—it’s beneath my contempt, it makes me angry, and it’s so hypocritical, so absurd that it really doesn’t warrant a response.  Except it does, because there are those who claim their words represent neurodiversity.  It got that response from people much more influential than I.

This post is not about them, though the words I write could apply.  This about what I consider the fundamentals of neurodiversity to be.

Consider the difference between cultural diversity and affirmative action.  Both seek to include people with different racial, ethnic, and national profiles in the workplace.  One does so by focusing on differences and disadvantages.  The other focuses on similarities and strengths.  One assumes that those who weren’t born white Americans need help getting a job.  The other assumes that everyone needs opportunities and can add value to a firm.

Neurodiversity is to cultural diversity what empowerment is to affirmative actionNeurodiversity and empowerment parallel each other in many respects; but, they are not synonyms, they are not the same.  Both have their place, but they are not the same.

Neurodiversity is not about services, accommodations, treatment methods, or any of the issues that are often in the forefront of our dialogues.  People who believe in neurodiversity do not share the same opinion about all of these things.  Those issues are not the essence of neurodiversity.

Neurodiversity is about two things:

1) People are naturally and normally neurologically different.  Some of these natural, normal differences are labeled “abnormal,” “disorders,” “syndromes,” or other value-laden labels that interferes with our ability to understand the different subsets of human neurology.

2) Human beings are valuable, in all their diversity, in and of themselves.

This means:

1) You cannot claim to value diversity and claim to be superior.  Those two statements cannot be combined without the use of a logical fallacy.  It would not, however, invalidate a claim to value diversity if you are struggling with feelings of superiority.

2) You can claim to value diversity and yet desire assistance, accommodations, and/or medical treatments.  The use of assistance, accommodation, and/or medical treatments does not invalidate a claim of valuing diversity.

3) You cannot claim to value diversity and claim to be inferior.  Those two statements cannot be combined without the use of a logical fallacy.  It would not, however, invalidate a claim to value diversity if you are struggling with feelings of inferiority.

4) You can claim to value diversity and dislike specific people because of the things they say or do that are within their control.  For example, you can dislike someone who bullies you and still value diversity.

5) You cannot claim to value diversity and dislike individuals or groups based on traits beyond their control.  For example, you cannot dislike someone who embarrasses you by having a seizure in public and still value diversity.

6) You can support the research of human differences and still value diversity.  For example, you can support the research into the various causes of autism and still support neurodiversity.

7) You cannot support the forced eradication of a group based on an undesirable trait and still value diversity.  For example, you cannot support diversity and research a way to identify and eliminate autistic fetuses.

8) You can advocate techniques that minimize or “un-does” challenges and still value diversity.  For example, a person can support the inclusion of individuals with spinal cord injuries and support researching ways to correct damage to their spinal cords.  A person can also support the inclusion of individuals who cannot talk and support researching ways to give them access to speech.

9) You cannot advocate the “cure” of a diverse group and still value diversity.  For example, you cannot support racial diversity and try to cure “blackness.”  Neither can you support neurodiversity and try to cure autism or bi-polar or any other neurological subtype.

Neurodiversity is about recognizing that the human race has natural neurological variations, accepting the individuals with all those variations, and including them in society.  It is about giving people the power and the opportunity to achieve their own individual potential, not quantifying that potential and dismissing those who do not “measure up” from consideration.  A belief in neurodiversity does not preclude the experience of disability.  A belief in neurodiversity does not preclude the desire to overcome the experience of disability, either temporarily or permanently.  A belief in neurodiversity doesn’t even preclude a belief that the government has no business extending entitlements or “special rights” to disadvantaged groups.  A belief in neurodiversity does, however, preclude the belief that you are in any way superior to another on the basis of things beyond your or their control.  Being smarter doesn’t make you better.  Being more socially adaptable doesn’t make you better.  Being more emotionally stable doesn’t make you better.  If you want to feel “better,” then use your abilities (whatever they are) to help others.  Not only will you really feel better, but it’ll be a better feeling than any false sense of superiority could ever give you.