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The Neurodiverse Workforce

  • Posted on January 18, 2011 at 7:58 AM

The first proposed chapter for my book, tentatively entitled “Neurodiversity at Work: A Manager’s Guide,” is designed to introduce the concept of neurodiversity in a business-friendly context.

Most of what is written about neurodiversity is from a social justice perspective.  While there are very real reasons for this, a consequence is that information about neurodiversity is not presented in the language most business people speak.  So this first chapter will ground the relevance of the social justice issue to the business world by translating the social justice language to the business language.

What does it mean to be neurologically diverse or neurodiverse?

As used in this book, neurologically diverse and neurodiverse are two different terms.  Understanding both is important to understanding how neurodiversity impacts the workplace.

Neurologically references the structures and mechanisms of the nervous system, including the brain, and the effects the nervous system has on how people experience life.  Diversity references the fact that there is no one neurological state.  We all are neurologically diverse.

Neurodiverse, on the other hand, represents a sense of identity.  Someone is neurodiverse, in this sense, rather than being neurotypical.  Societies tend to prefer a certain set of neurological traits; this set of preferred traits is perceived as neurotypical.  In some societies, including the United States, traits that deviate from this preferred “norm” are perceived as damaged or insufficient.  This creates stigma and an environment of prejudice against anyone who demonstrates neurodiverse traits.  This prejudice can be extreme, such as the prejudice faced by people with so-called low functioning autism, which is considered an extreme deviation from the norm.  This prejudice can also be relatively mild, such as the prejudice faced by people with depression, which is considered a less extreme deviation from the norm.

So, what does it mean to be neurologically diverse?  It’s means you’re a human being.  Humanity is neurologically diverse.  What does it mean to be neurodiverse?  It means you are part of a perceived “undesirable minority” and will face stigma and prejudice as a member of the workforce.  This prejudice and stigma will continue unless managers learn to manage a neurologically diverse workforce or you learn to hide your undesirable differences.  It also means you may carry a label of mental disorder, as your neurotype may have been medicalized due to its undesirability. 

At least an estimated 26.2% of the American adult population could identify as neurodiverse, or one in four adults.  According to the 2004 census, that’s an estimated 57.7 million people in America alone.  This minority is too large and too important to ignore, but the business world often ignores the needs of this population.

What is neurodiversity?

Neurodiversity is about the confluence of two distinct beliefs:

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.

As such, neurodiversity is a social justice movement that is affiliated with the disability rights arm of the civil rights movement.  Neurodiversity is also strongly tied to autistic advocates, who advocate for acceptance and accommodations for autism, so they can better interact with societies that devalue the autistic ways of being.  As used in this text, neurodiversity is not exclusive to autistics, but encompasses the wide set of neurodiverse individuals who participate in the workforce.  This includes individuals with autism, mood disorders, attention deficit disorders, and other neurotypes that may or may not involve a medical diagnosis.

How does this social concept apply to the business environment?

Consumers are neurologically diverse.  Workers are neurologically diverse.  Business is, by extension, an interaction of neurologically diverse individuals for profit.

Understanding, respecting, and accommodating neurological diversity is an important business survival strategy as the world changes in the face of social pressures from neurodiversity advocates.  Businesses have long struggled with issues stemming from a neurologically diverse workforce, but have yet to come to terms with these issues.

The time is now; because, as pressure mounts, if businesses cannot or will not respond, consumer and legislative pressure will force businesses to respond in ways that suit bureaucratic form rather than the flexible business environment and the needs of your workers.

“Letting Off Steam”

  • Posted on February 26, 2010 at 8:37 PM

At first, I envision one of those old cartoon trains or factories.  Some boiler made out of cartoon silly putty is about to explode.  Then, just in time, they let the steam off and all is well.

Perhaps a better vision is a simple teapot.  “I’m a little teapot, short and stout…hear me shout.”  We fill the teapot with water and set it to boil.  When it’s hot, it steams, and the steam goes through the opening and makes a whistling sound that calls us over to brew our tea.  Letting off steam is not only functional; it is built into the design to serve a specific, automatic purpose.

And so, as I look around at all the bloggers who, upon on occasion, take a jab at the neurotypical world—making fun, building their fan base with a little humor—I try to see a teapot.  But I’m not very good at making pictures in mind.  In fact, I cannot.  I spin words and concepts and feelings, and from them I shape pictures with the words I place on the page.  Overwhelming any picture I try to construct in this manner is the feeling of sorrow and regret that comes creeping over me.  These jabs are not a functional little teapot, however normal and understandable they are.  These jabs are not “neurodiversity at its finest” or even “neurodiversity at its worst.”  In fact, they cannot represent neurodiversity at all.

In an earlier post, I said:

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.

Every time a neurologically atypical person makes fun of a neurological typical person because they’re neurotypical or attributes an entire set of behaviors to neurotypical people on the basis of a few representative examples, you are divorcing yourself (at least, for a little while) from the concept of neurodiversity.  If neurodiversity, as per the meaning I proposed, is something you believe in, then you betray your own beliefs by doing this.

I’m not point fingers or citing names.  My pot is just as black as your kettle, and I know that.  It’s a very human pattern of behavior.  We let off steam, especially in the face of adversity.  It’s normal.  It’s natural.

But it’s wrong.

It’s an act of prejudice.  It’s counterproductive to the concept we purport and support.  And we weaken ourselves every time we give in to this impulse.  And we know better.  We really do.  We can say we don’t, we can justify ourselves, but these are excuses.  We know better.  If we didn’t—if our standards weren’t set higher than this behavior allows—we wouldn’t be demanding respect, acceptance, and dignity for neurologically atypical people.  We do know better.  Respect has to be mutual; it has to go both ways.

The stereotypical neurotypical person erects barriers for others, wrapping themselves in ignorance and privilege, ignoring neurologically atypical people, and forcing their ways on us.  It happens.  There really are people like that.  But, it’s also a stereotype.  The people who behave in this way represent only themselves; they do not represent neurotypical people and should not represent neurotypical people in our minds.  If you do not recognize that or cannot acknowledge that, then you do not support neurodiversity as I define it.  If you support any semblance of neurodiversity it is strictly on the basis that the concept empowers you.  If that is the case, please stick to empowerment.  You do not have to respect diversity to advocate for empowerment of unprivileged individuals.  You do have to respect diversity to advocate for neurodiversity, otherwise you’re just a hypocrite and there’re enough of those in the world, thanks.

The Burden of Bureaucracy

  • Posted on November 10, 2009 at 5:53 PM

With the threat of swine flu, our local school district is taking extra precautions to remind parents to keep their children home when experiencing flu-like symptoms.  This notice was sent home on a bright red flyer with all three boys.  The school system has a standing policy, which I’ve known since the first started attending Early Childhood, to keep children home for 24-hours after the symptoms of illness are gone.

Pretty much since this school year started, Ben has been sent home on a fairly regular basis due to vomiting.  Alex has also been sent home due to vomiting, but with less regularity.  Due to school policies, each time one of my children vomited, they would lose a partial-day and a full-day of school.  Normally, I wouldn’t object to this arbitrary rule.  I don’t believe it does much to alleviate the spread of contagions, because each contagion has its own window of opportunity.  However, at the very least, it is a measure to ensure the child is actually well enough to attend school and benefit from the experience.

That is to say, normally I would not object, but…

1) Both Alex and Ben have a history of vomiting when they are not ill.  For Alex, this history is well-documented and has been observed and verified by medical practitioners and school staff.  Ben has exhibited similar behavior, but his experiences are less well-documented because this behavior has occurred with much less frequency—until now.

2) I recently received a letter from the school system chastising me for keeping my children home.  Despite the school’s demands I keep my children home at any significant sign of illness, despite my compliance with these demands, and despite my telephone calls to report the nature of my child’s absence and the symptoms related to these absences, the school has elected to count the boys’ absences due to illness as “parent excused absences.”

Parent excused absences are considered discretionary on the part of the parent.  If you take your child on vacation during a regularly scheduled school day, then that day counts as a parent excused absence.  There are consequences if you use up too many of these days, because you’re interfering with your legal obligation to send your child to school.  Days your child stay home due to illness are not supposed to be counted as discretionary days of absence, because your child is not allowed to attend school as per school policies.  Yet, I’ve received a letter challenging my choice to keep my children home with such frequency.

Why were these days mislabeled as discretionary absences?  When I kept my children home sick, I called into the school to report the absence, the reason for the absence, and the symptoms my children were experiencing—all done per the instructions I received in the various flyers sent home.  What I did not do is drag my children to their pediatrician, expose other patients to the contagion, just so the doctor could say, “Yep.  Your child is definitely ill.  Here’s your note.”  Apparently, I’m expected to do exactly that.  To avoid this scenario, I have been instructed by a school secretary to call my doctor (versus bringing my children to the clinic) and the doctor will fax over the same note.  Thus, I avoid false accusations of keeping my children home at my own discretion.

The only justification I can imagine for this procedure is the undisclosed psychic training doctor’s receive as part of their medical schooling.  Because doctors receive this training, they’ll know I’m being truthful when I say my children are ill.  Because school staff does not receive this training, they must assume I’m a lying scumbag who keeps my children home to thwart the school’s master agenda to educate the next generation.  Since I do not believe doctors receive psychic training in medical school, since I do believe both the doctor’s time and my time is too valuable to waste for the sake of mindless bureaucracy, since I do not believe it is conducive for the school to assume a parent is lying regarding the reasons for absence, and since I do not believe it is ethical for the school to require such a procedure but not post it with its other requirements, I elect not to comply.

 Now, I could simply leave this post here: a rant to a situation that aggravates and frustrates me.  On the surface, it’s just that.  However, there is an underlying issue not readily recognized.  I perceive this as “bureaucratic non-sense,” I find it aggravating, stressful, and unnecessarily time-consuming.  I find the need to challenge this situation and bring it to the attention of those positioned in places of authority within the school system.  When I look at situations like these, I gravitate to the default I-me position.  I see this from my own perspective and I deal with it accordingly.

I’m not confessing this from a position of guilt, but to highlight a different kind of absence.  I’m the one who handles the bureaucratic barriers my family faces and must navigate.  When the school makes an unfair decision, I deal with it.  When it’s time to negotiate the IEP, I negotiate.  When it’s time to fill out paperwork, I enter the information.  When it’s time to decide which barriers are worth challenging, I do it.  When there are interruptions in services, I fix them.  I make the telephone calls, I fill out the paperwork, and I go to the meetings.

I’m not on some kind of ego-trip here.  I do not do these things because I enjoy being the go-to person.  I don’t do these things because bureaucracy is just so much fun.  I do these things because Mark can’t; or, more accurately, I do these things because Mark chooses not to do them, even when it means being penalized or losing or never receiving services we would otherwise be entitled to receive.  I do these things, because as much as these barriers represent a source of unnecessary stress and aggravation for me, they represent near-insurmountable barriers for Mark.

Bureaucracy places a burden on people within this society in many forms and in many ways.  Bureaucracy has a profound effect on daily living, from the medical care we receive to how we pay taxes to managing our reporting requirements.  For me, and for most people, these issues represent an annoyance, an inconvenience, and a consumption of time we’d rather avoid.  This alone is reason enough to affect change.

However, for some, bureaucracy represents a substantial burden that keeps them down.  My husband has lost education opportunities, employment opportunities, entitlements, benefits, and even a marginally profitable business due to the burden of bureaucracy.  Barriers that I would grumblingly crawl over or around are impassable roadblocks to Mark.

While I’m sure someone could analyze Mark and describe this reality in the language of disablism and deficits that is not my purpose.  My point is that we erect arbitrary, unnecessary barriers that exclude people from necessary systems.  In recognition of this phenomenon, government agencies and corporate bodies provide assistants to traverse these barriers.  Often, these assistants present yet another barrier:

1) Their manner is often condescending and disrespectful.  I’ve experienced this myself and have observed this when others deal with my husband.  This behavior makes people feel less able and inferior.  Whether or not this behavior is intentional, it is pervasive.

2) In order to access these assistants, you have to be able to navigate the bureaucracy sufficiently well to communicate the needs for this assistance.

In the face of these additional barriers, Mark opts out.  He chooses not to access necessary services, because he does not want to confront these barriers.

So, while I fret and stress over these barriers, I’m thankful I’m here to face them.  I also grieve for those who are like Mark, but do not have someone who is both willing and able to face these barriers in their stead.  I feel the anger and frustration boil, because these unnecessary, poorly planned “services” are obstacles that reinforce the neurotypical status quo.  And I fear that these barriers will not be torn down by the time my children reach adulthood.

Neurodiversity is for Everyone

  • Posted on October 12, 2009 at 10:06 PM

When I learned my first son had autism I also learned the recommended “solution” to this “problem” was to institutionalize him.  Willy displayed most of the symptoms and traits of classic autism.  He’d experienced a serious, obvious regression.  He was very unhappy, confused, and frustrated; he threw tantrums for no apparent reason.  Alex was two.  He had no words and didn’t want to play with or even acknowledge the existence of other children.  The doctors suggested that Alex’s behavior was in response to Willy’s behavior.  The doctors told us many things.  What they didn’t tell us was how we could help our children.

I never considered the possibility of consigning my son to an institution.  Children, no matter how challenged or challenging, are not disposable.  I was full of feelings that I could not put into words.  The closest I could come was:  “You can’t have my son!”  Later, those words developed into:  “My children aren’t broken, don’t try to fix them.”  On the Internet, I began to hear “whispers” of another approach.  Apparently, there was another way to look at these “problems.”  These “whispers” came from people who did not support the idea of neurodiversity and did not state the concept itself.  These people, when given the opportunity, told me my feelings were wrong and I was harming my child by not trying every treatment available, or at least the treatment they supported as the “miracle cure.”

I was a political blogger at that time, devoted to the anti-incumbent sentiment.  In short, I was already something of a rebel – ready and willing to challenge the status quo.  I was quirky, neurotic, and intelligent.  I struggled with social relationships and face-to-face meetings; and I already knew I had traits occupational therapists described as Sensory Integration Disorder.  I already knew that the best thing for me was to learn how to cope and for others to let me just be myself.  Why, oh why, could my boys not get the same respect I wanted for myself!?!

Sure, I was teased mercilessly as a child.  Sure, there were lots and lots of people who tried to marginalize me, and some even succeeded.  But it’s my head.  It’s my mind.  Why should anyone get to mess with that?  My husband, too, is neurologically different.  With bi-polar disorder, he’s faced a lot of outward pressure to conform to something he is not; and all that pressure seems to do is to make it more and more difficult for him to function.  Why should anyone get to change him?  Why can’t they just help him?  And, now, our children, who are so different they need the label “autism” to make them understandable – a label full of fear and shame and voices calling for their imprisonment.  Why should anyone get to mess with my kids’ minds?  Why should anyone get to say they are anything less than children?

All these feelings were denied, put down, and explained away.  I was wrong.  I was simply wrong.  The psychologists were right.  I was wrong, and if I were fixed I would know I was wrong.  If you’ve read this far, then I suspect you know how that feels.  It’s not good.  What was worse for me was how my words were twisted and distorted from what I meant.  I ask for help and people talk cure.  Words are my tools, as a writer, they’re my strength.  But all my words were being shot back at me, deformed and malign.

In the blogging venue, I stumbled on Estee’s The Joy of Adam (the old one) and somehow I got to Zilari’s Processing in Parts (the blog is now gone and I miss her).  There my feelings were validated.  Even when we didn’t agree, they didn’t say I was wrong for feeling the way I did.  And, they gave me a word:  neurodiversity.  I love words.  I collect words.  I understand words, with all their limitations and capacity for misstatement, I understand them.  That word was quite possibly the greatest gift any “community” has ever given me.  I could take all the pain, all the rejection, all the hurtful things, and I could dump them into that word.  And I did.  Suddenly, I was talking to people who didn’t shoot back cure when I said help, and it felt wonderful.

But, neurodiversity is more than that.  Neurodiversity isn’t for any one type or group.  Neurodiversity is for everyone.  Neurodiversity is for Willy who is doing so well by societies standards despite with his autism.  Neurodiversity is for Alex who still struggles so very much.  Neurodiversity is for Ben who is his own little man.  Neurodiversity is for Mark, who needs acceptance and accommodation because society sees him as a failure, and so he sees himself.  Neurodiversity is for me, though my differences aren’t “disabling,” I’m still too different to succeed without the acknowledgement that being different is okay.  And neurodiversity is for my neurotypical step-son, who has unique learning needs of his own, though he can get by in the status-quo society we live in.

To me, neurodiversity is about questioning what we know and what we think we know about how people think.  It’s about discarding prejudices and assumptions about the existence of a “proper” or “appropriate” way to think.  It’s about questioning the use of “normal” or “abnormal” to describe anyone’s thinking.  To me, neurodiversity is about recognizing and appreciating that everyone has a “different” mind, one that is unique to them, and that nobody should be marginalized, disenfranchised, or violated because their mind doesn’t meet somebody else’s standards or expectations.

Freedom of thought is a fundamental right that nobody has the authority to take away.  We can regulate and legislate against people’s actions.  We can regulate and legislate against people’s words.  We cannot regulate or legislate against people’s thoughts.  Thoughts are our own.  You don’t know someone else’s thoughts.  You do not understand someone else’s mind.  You can also perceive what goes on in someone else’s mind through their behavior.  And your observation depends on what the other person communicates and what filters you put on that communication.

To deem someone’s thoughts or feelings as right or wrong is the ultimate act of hubris.  To invade someone’s thoughts or feelings is the ultimate form of rape.  To re-write someone’s thoughts or feelings to suit your own purposes is the ultimate form of murder.

Behaviors and communications are regulated and society chooses which to legislate against.  We form rules, both legal and social, to shape what we consider appropriate.  This is not going to change.  What we can change is the limits and assumptions we place on those behaviors and communications.  Being different and expressing oneself differently shouldn’t be against the rules.

Self-expression is a fundamental right secondary only to freedom of thought.  There is one primary reason I know of to regulate or legislate against self-expression and that is immediate or imminent harm.  The proverbial “fire” in the crowded building.  The cliché “I’m going to kill you.”  A picture of someone with a bullet through their head left in someone’s mailbox.  A picture of a naked child in a suggestive position.  These are threatening, harmful forms of self-expression.  They either cause harm or suggest harm will be caused.  A secondary reason to regulate or legislate against self-expression is those messages that manipulate for the purpose of or with the result of doing harm.  Pornography, false advertising, perjury, and defamation fall under this category.

Silencing the dissenting voice because it doesn’t fit with others’ expectations should not ever be regulated or legislated against – not legally and not socially.  Nobody should dictate how someone must communicate.  Nobody should dictate what someone should communicate on their own behalf.  Nobody should dictate when someone can communicate.  Nobody should dictate why someone should communicate.  Nobody should dictate if someone should be allowed to communicate.  Anybody who does these things on behalf of neurodiversity, in my opinion, is distorting, deforming, and maligning the meaning of the word.

Neurodiversity is about recognizing and celebrating the individual in whatever shape, form, color, creed, brain, or label they come in.  Anything less is not “diversity.”  It’s certainly not neurodiversity.

***This post is inspired by the conversations taking place on The Standard Review, but the thoughts are my own.  I do not assume to fully understand or in any way express the thoughts, values, or beliefs Ed has expressed.  But I certainly do respect and appreciate them.***