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Our Hidden History

  • Posted on October 26, 2012 at 8:00 AM

In an effort to prepare for Willy’s appointment with the geneticist, I pulled the major records from all three boys’ medical files. Each packet of documents in these old files corresponds with a story point on the memoir I’m writing, but I hadn’t pulled any of them yet. For a while, I just re-read what had been said and what had been determined. I spent a little longer on Ben’s, because getting an accurate diagnosis was a bit more difficult with him. I thought about the moments and the hardships that had gone along with each of those packets of papers.

Reading them again, I was surprised at the hidden prejudice I saw so clearly. Alex, who is the most severely autistic of my children, was diagnosed with PDD-NOS, not autism. Though his verbal and nonverbal communication delays are extreme, he’s more socially-inclined than expected of an autistic individual. His ability to engage socially is impaired, but his desire to engage socially (with adults) is not. For this reason, he did not meet the criteria of autism.

As time has passed, as their skills have improved, neither Willy nor Ben showed this dramatic decreased desire to socialize that was expected of Alex in order to obtain an autism diagnosis. Their ability to socialize is impaired, and this ability is impaired in some different ways than Alex’s is, but the desire is there and it has always been there with all three boys in one way or another. Just not the “normal” ways.

One thing my husband and I learned early on is that if we wanted to engage our children in a social way, we’d have to do so where they are, which wasn’t where we’d expected them to be and it certainly wasn’t where we were. So, we adapted. With Willy, we were able to adapt the most successfully, because we could understand what motivated him. With Ben, we were able to adapt with moderate success, because we could understand enough of what motivated him to do so. With Alex, we’re still trying to figure out what motivates him. We’re still adapting. He’s still very much where he is, and we have to come to him to make the connection—but sometimes he just seems out of our reach.

The motivation is there, but with such a severe communication disability, we can’t quite make the fully satisfying connection that Alex craves.

The possibility exists that part of the reason that Alex struggles as much as he does is because he’s having seizures that we’ve failed to recognize. Until we saw this neurologist, the possibility of seizures—of Alex having seizures “now,” instead of developing them later—was never mentioned. He was never tested for “hidden” seizures, because we didn’t know that he should be. The more I read about epilepsy, the more I wonder: Is this the missing piece? Is this the key?

We won’t know until after a few more appointments—one for the initial evaluation and one for the video EEG and one for the post-evaluation, and possibly more in between—the first of which has been scheduled for early December.

Flipping back through these packets of information, I read the doctors’ words and there are passages that slap me in the face. These assessments that we endured to get where we are now were wrought with prejudice: Everything about them is underwritten with the assumption that it is wrong to be autistic. And what’s worse, the answers these assessments provided might not even be enough.

Since almost the beginning, I recognized my children as neurologically different or neurodiverse, and yet it’s only within the last few months—with the onset of epilepsy—that I’ve taken any of my boys to a neurologist. Always, it’s been psychologists. When I define autism for publication, I start by referencing the DSM-IV, a psychology manual. Throughout this time I’ve been suspicious of psychology, of the nature of the discipline, of its start with Freud, of its connection to eugenics, of its overzealous classification of “disorder.” And yet, here I am, realizing with not a small bit of guilt, that I’ve been enabling them to define autism for my children, for my family, and even for my writing. I’ve been enabling them to define, despite my resistance, the nature of my children’s being. I’ve been enabling them to set value (rather, lack thereof) on their worth.

I can justify it. The neurologists were always too difficult to get to. The referrals were always for psychologists. The system funneled me in this direction, and to get my boys’ the services and accommodations they needed I had to work within the system. I know why I did what I did.

But it all sounds hollow now. Empty. Mistaken and misguided.

What if, this whole time, Alex was having untreated seizures? What if treating those seizures empowers Alex to make the connections that have so long eluded us all?

Whether that’s true or not, I can’t help but feel that, despite my best efforts, I’ve failed my sons.

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.

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.***