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Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.

Derailed: Pulling Up the Tracks

  • Posted on October 30, 2011 at 2:55 AM

One trait that seems common to autistic individuals is a need for order, for predictability, for sense to be made in this chaotic and unpredictable world—it’s often marked as a deficit. But I’m not sure this is so different from typically developing people. I’ve known more than a few control-freaks who have no other marked traits associated with autism. The difference is how they cope with their need for order and predictability. They apply a patina of control over the world by being rigid and driven, filling their lives with minutiae, and bullying others to conform to their ways of doing things. Their will is a formidable force to be sure, but I can’t really see that sort of behavior as a positive. They don’t look particularly odd, but they attain their semblance of control at the cost of others. Whereas, meltdowns aside, most of the autistic coping mechanisms are less destructive to others’, but limit the abilities of the autists.

For me, order isn’t necessarily a matter of constructing a daily routine. I’ve never found a good way to bring order to my day in the sense that I know what I’ll be doing and when. If nothing else, the irregularity of my sleep cycle interferes with that in problematic fashion—something to work on, definitely. I prefer order to start on a more macro level. I need to have goals for my life, and I set those goals at least five years out. Then I need to break those goals down to what I want to achieve in a given year, a given month, a given week.

The problems I encounter are two-fold. First, I set the wrong goals. Second, life intrudes on my sense of order. In the last two years life has intruded a great deal. Very few of my plans have worked out. Many of those goals were just the wrong goals or the right goals at the wrong times. My goals also lacked a necessary balance—I lacked goals that would improve or maintain my own health and well-being, like getting sufficient sleep on a predictable basis. The rest of it was the natural chaos that results from this messiness we call life. And, of course, I wanted to more than I was able to in the time provided.

Recently, this has all come to something of a head. My train, rumbling ahead at high-speeds, derailed. The aftermath was devastating. It wasn’t just a single point coming on done; it was the accumulation of my chaotic life paired with major and minor goals coming unraveled, seemingly one on top of the other before I could cope with the first. The cars piled up. The result was an inner life more mangled than manageable and an outer life that hasn’t been working for far longer than I’ve been willing to acknowledge.

Sifting through the wreckage has taken some time. Making sense out of the pieces, identifying where I went wrong, and discovering ways to fix it have also taken time. The process isn’t complete, either. But I’m laying new track—setting a new course—and picking out new cars to put on the train that is my life.

Order doesn’t come naturally in this chaotic world. We have to make it where we can, how we can, though often it’s merely illusion. Sometimes I forget that last part.

Creative Flip-Flopping: A Thought on My Neurodiverse Brain

  • Posted on October 26, 2011 at 3:04 AM

I was sitting in my journalism class, trying to find a way to sit that would allow me to concentrate better by making me less conscious of my body when my professor said something that struck a chord. It wasn’t a chord of similitude, but a chord of difference. The lecture was on overcoming writer’s block. I’m not saying I’ve never had writer’s block, but I’ve read few descriptions of the phenomenon that really matched up with my own experiences. My professor’s rendition was no different in that regard—it didn’t fit with my own experience.

This is by no means meant as a comment on my professor’s teaching. Aside from the obvious bias towards neurotypical processing and skills, he’s a great teacher. He really cares, he’s interested in learning our interests and helping us to develop them, and he’s got some great insights to share. In a way, even his neurotypical bias is intriguing. I love reading about how different people think. How else—unless someone describes their own thinking—am I supposed to learn what really goes on in people’s heads or how their brains work?

Sure, yeah, I’ve done Cognitive Empathy 101, but, frankly, I think the theory is baloney. People assume they understand what’s going on in each other’s heads, but there is a lot more variance than such assumptions account for. Some of the more obvious things, like whether someone is sad or troubled, provide insights into someone’s emotional state. But you don’t really know what’s going on in their heads, nor do you really understand how their brains work. Just look at all the fiction, nonfiction, poetry, and various other art forms that try to express and/or explore the differences between male and female brains. Throw in autism, bipolar disorder, ADHD, child abuse, depression, addiction, personality types, sexual orientations, cultural differences, racial differences, intelligence differences, and just about anything else you can think of—and, guess what, you’ve got a lot of different brains working in a lot of different ways. Sure, some of those ways overlap and some differences are greater than others, but the thing about cognitive empathy is that it is based on an assumption of similitude that is, more so or less so, inaccurate.

Back to the classroom. Back to my professor’s description of the work he does (and has generalized to others) to flip between the right brain and the left brain in order to produce creative works. Hm. He described in considerable detail his process of pushing through left-brained (or conscious) writing to right-brained (or unconscious) writing. Hm? I mean, really? That’s work? It takes effort? Really? Apparently it does.

My brain doesn’t work that way. I flip-flop between right- and left-brained thinking/writing almost at will. Sometimes—rarely—I’ll need a jolt. And by “jolt” I mean a few minutes to stand up and pace to unwind the right-brained rant going on in my head so I can get back to the more critical, more responsible left-brained point I was trying to make. The switch, for the most part, is fluid. I can do it at will. It’s not work. But that’s just me. Well, I’m sure there are others, but I don’t assume everyone’s brain can or should be so fluid. But, I also didn’t know how much work, and how much crap, some people have to go through to make the switch.

I have no idea whether this quirk of my brain indicates that I’m closer to the autism spectrum, or if it indicates something else entirely. The point is that individual brains work differently. Each person is different. My brain is not some standard model issued out of some cognitive-empathy-friendly box. Few people I’ve talked with understand the seething layers of discourse and distraction going on in my head and only my head almost constantly. Few people understand why writing is so much easier than talking for me: because writing forces my brain to work consciously on one and only one level at a time, while talking does not.

In fact, when I described this internal noise to someone who had a limited knowledge of psychology (Psych 101, without independent and supplemental study), they told me it sounded like I was schizophrenic, except they just used the word “crazy.” Of course, due diligence being what is and knowing enough about schizophrenia to know that it’s not something I want to experience without professional help, I told my psychologist exactly what I told that individual. She laughed (in a friendly way, not as if she were laughing at me—and yes, I can tell the difference). No, I’m not schizophrenic and no I’m not delusional. I just think too much.

Yeah, well, I knew that.

So, back to the whole brains thing—differences make for different brains, different thought patterns, different thought styles, different coping mechanisms and different internal realities. I greatly admire and appreciate Rachel’s efforts to tackle the myth that equates autism with a failure to empathize, but I’ve really, really got to wonder about the people making these claims and their ability to empathize. While Rachel is making the distinction (and it’s an important one) between cognitive empathy and emotional empathy, I really have to wonder if the first step to true cognitive empathy isn’t the ability to recognize that other’s people’s brains may not (probably don’t) work like yours does. What “gets” other people—what makes them laugh, or cry, or smile, or dance, or whatever emotional response you want to insert here—isn’t necessarily going to be what makes you do the same.

We’re different. It’s not a bad thing. It really, really isn’t. If we were all the same, we wouldn’t need fiction or nonfiction narratives. If we were all the same, we wouldn’t need art or poetry or memoirs. If we were all the same, we’d bore the life out of each other—social contact would suck us dry and leave behind lifeless, boring husks of numbness. We wouldn’t need to reach out, because the only people to reach out to would be others who were just like ourselves. I shudder to think of it. Different is good. Different is right. We’re different for a reason, more so or less so, but all different. And I’m glad for those differences.

Now if we could all just figure out that communication—not some magical, inaccurate “knowing”—is how we connect.

Independence: Part 1

  • Posted on July 9, 2011 at 6:21 PM

This past week we celebrated the United States’ independence from Britain. All across the country people celebrated with parades, fireworks, parties and barbeques. My family spent some time with extended family at my in-laws’ cottage. But as we celebrated our independence, I couldn’t help but think about what independence means to my family and the many people like us throughout this country. One thing is for sure, we weren’t the ones setting off fireworks, though there were plenty of them going off around our neighborhood. Just listening to these relatively distant loud bangs and pops or seeing the flashing colors was enough to aggravate my own senses. I can only imagine how much these stimulations irritated my children; though I know Alex and Ben found it difficult to sleep while all of that was going on.

My reflections on the meaning of independence were a bit more basic. What is independence? Why is it so important to people in this country? What will independence look like for my family as my children grow up? What will it look like for each of my children once they become adults? I tried to find a way to fit this all into one post. Obviously, I failed. So, consider these topics on your own and in the next few posts I’ll relate my thoughts on each of these topics and try to pull it all together into some kind of conclusion.

I know that’s not very reassuring, but try to stick with me. It should be an interesting ride!

Interesting

  • Posted on March 11, 2011 at 6:44 AM

Willy came home with a single piece of homework.  He had to pick three diseases to research and I needed to sign the paper on which we wrote his choices.  When I first looked over the list of diseases, which were in alphabetical order, I had to pause.  Interesting: the word resounded in my head with a not-so-subtle tone of disapproval.  Towards the end of the A’s was one word I knew was not a disease.  You guessed it.  Autism was listed as one of the diseases Willy can research.  Interesting.

On the one hand, when I told Willy that it would be good for him to research autism, considering he and his brothers have autism, he was somewhat surprised.  I know I’ve told him about autism.  I know we’ve discussed it.  But it’s not something we make a point of bringing up over and over to the boys.  He’d forgotten he and his brothers have autism.  So, researching it will probably be good for him (especially if I’m helping to direct his research).

On the other hand, autism is NOT a disease.  The teacher should know this.  Autism should NOT be listed as a disease.  If the sheet was labeled “diseases and disorders,” then I would have no problem with it.  But it’s not.  It’s a list of diseases that include AIDS, cancer, diabetes, and autism—among others, some of which I know are not diseases (like ADHD) and some of which I suspect are not diseases (like Cerebral Palsy).  I consider this misinformation on the part of the teacher/school district.

Of course, those two hands can clasp together:  Willy can do his work in such a way that misinformation is corrected, which can better inform his peers and (if necessary) his teacher.  This is good, but it bothers me that it should be necessary.  Misinformation in schools is problematic for obvious reasons, but misinformation is problematic in general and Willy’s probably going to have to correct a lot of it as he makes his way in this world.  Autism as a disease as part of my autistic son’s school work: Interesting.

Mommy Minder, Mommy Finder

  • Posted on January 3, 2011 at 8:00 AM

There are a few in the autism community that thoroughly investigate any studies they find interesting.  I’m not one of those.  But once in a while I do find a study that strikes a chord with me.  I don’t latch onto that study as gospel truth, but I do reflect on it once found.

One such study relates to visual skills.

Children with autism may lack certain visual skills needed to be independent in adulthood, new study findings suggest.

For example, they might find it harder than other adults to find shoes in the bedroom or apples in the supermarket, according to researchers at the University of Bristol in the United Kingdom.

The study authors asked 20 children with autism and 20 typical children to press buttons to find a hidden target among multiple illuminated locations in a room. One side of the room had more targets than the other side.

The children with autism took longer to recognize patterns in the test structure that would help them choose where to search for the targets. The findings suggest that the ability to search for objects in a large-scale environment is less efficient and less systematic in children with autism compared to typical children, the researchers pointed out in a university news release.

Personally, I’m a little skeptical that the findings (concerning finding hidden targets in multiple illuminated locations) can be generalized to finding shoes or apples, or that the delays in these skills identified in autistic children necessitates a similar lacking in autistic adults.  However, it does strike a chord with me.

One responsibility that seems to be primarily mine in my household of men is keeping track of things and finding them once they go missing.  To me, it’s always seemed to be a skill of thoroughness.  You put things back into their place, and when they’re not there you look everywhere until you find it.  But, perhaps, there’s more to it than that.

Perhaps I am able to identify things in a manner that my husband and children cannot.  Whether it’s a perceptual ability or a skill, I don’t know.  I mean, if you literally cannot see what you’re looking for—and by see, I mean differentiate the object you’re looking for among the clutter—, then how can you find it?  But, perhaps it is a skill.  Perhaps it is one of those skills that neurotypical individuals (and some neurodiverse individuals like myself) pick up more or less naturally to the extent that they don’t know how to teach it to those who do not acquire the skill in a similar manner.

It’s worth some thought.  Perhaps if I spent less time being annoyed that I am expected to know where everything is even after they’ve moved them and more time helping them develop this skill of minding and finding that I take somewhat for granted, then perhaps we would all be better off. 

On the other hand, from what I’ve heard from other mothers (and not just mothers of autistic kids), this seems to be a common complaint among women.  Perhaps it’s a male/female thing.  I mean, if the study didn’t account for the imbalance between boys and girls with diagnoses of autism, but had a balance between boys and girls in their typical peer group, then perhaps the difference they recorded could be less about typical/autistic development and more about male/female development.

So, what do you think?  Is it a skill or an ability?  Is it related to autism or something else?

Not Passing

  • Posted on September 7, 2010 at 6:50 PM

Earlier this year, I finished up four years of college in pursuit of a bachelor’s degree.  It was a great accomplishment for me, but it also thrust me into uncomfortable territory.  During those four years, I went to campus once—and that was just to take the test to get in.  Even my graduation ceremony was held off campus.  All my classes were online.

But graduate school will be different.  In order to get the graduate degree I want, I will have to take most (perhaps all) of my classes in person, on campus, amongst my fellow students.  Yes, that’s right.  I will actually leave the comfort of my own home and go out amongst strangers.

Now, I’m not sure how aptly “passing” applies to my situation.  As I’ve said before and will undoubtedly say again, I have no diagnosis of autism and, unless the medical services structure catches up, I’ll probably never be evaluated for a diagnosis—as things are now an adult diagnosis simply requires too much effort.  So, I’m not deemed to be on the autism spectrum.  However, I’m not neurotypical either.  Along with a history of mental health issues (depression and anxiety, mostly), I experience sensory stimuli differently from most people—something I was only able to figure out after my children were diagnosed with autism and sensory integration disorder.  Since I have figured it out, I’ve been able to consciously develop coping mechanisms.  I’ve thrown off the shackles of not-coping and use the coping mechanisms that allow me to be who I am without being overwhelmed, at least when I’m at home.

But what should I do about graduate school?  On the one hand, part of the purpose of attending a written communications program and getting a graduate degree in writing is to participate in the writing community.  You meet people who write and that helps improve your craft and also improves your long-term chances of a making a living writing by finding people who take an interest in your work.  That’s the idea anyway.  Fitting in (thus blending in) has something to do with that—not that I’ve ever understood what that really means or how one really goes about it, but it seems to be how our society works. 

On the other hand, my odd-seeming coping mechanisms help me concentrate.  They help me focus my mind on what I’m listening to instead of being distracted by the background sounds or the sensations of my own body.  Strange places can be very distracting with their white noises that aren’t my white noises.  If I can’t cope, then I can’t concentrate, and if I can’t concentrate, then I can’t learn—so what’s the point?

Besides, I’m more or less comfortable being who I am, so why should I hide that when part of being who I am makes me the writer that I am?

So, I made a conscious decision not to pass.  My first day in class, I took off my sandals and sat in my chair with my legs folded under me.  I got a few, brief looks, but that was about it.  I organized myself using a few different strategies that work for me.  People noticed, but nobody seemed to care.  I thought to myself that I’d be okay as long as nothing major happened.

Then, one day, I was talking with one of my peers when there was a malfunction with the multi-media equipment.  The equipment emitted a loud, long, high-pitched whir.  Everyone was annoyed.  I was beyond annoyed.  This was a sound I could not tolerate.  The sound crashed into my head and shattered every single thought like glass.  The shards of glass cut into my brain.  And everything hurt.  The sound was physically painful—not just to my head, but to my whole body.  It cut and cut and cut into me.  And when everything was cut to pieces, the sound cut the pieces to pieces.

I covered my ears just like I’ve seen my boys do so many times and I cowered in on myself.  I squeezed my eyes shut as if I could squeeze out the sound.  It seemed the whole world disappeared, except for the sound and my need to block it out.  But it still made its way into my head—weaker now with my hands over my ears—and it still hurt.  I don’t know if I made a counter-sound to try to drown it out.  I might have, but I don’t know.  I couldn’t think.  I couldn’t plan.  I couldn’t strategize.  For those long, drawn out moments, the rest of the world was just gone.  It was like my entire nervous system was in melt down mode.

And then, after several minutes, the sound stopped.  Nobody stared.  Nobody did anything.  The peer I was talking to simply resumed our conversation where we’d left off when the sound started.  However weird my behavior may have seemed, I was accepted just as I was.  No snide comments.  No put-downs.  No weird looks.  I was just accepted.

Maybe it’s that I’d already talked about my kids by then.  Maybe it’s that my peers are, for the most part, older than your average college student.  (The median age at my school is 38.)  Maybe it’s that one of my peers worked with kids on the spectrum and another is a psychology professor.  I don’t know.  But I’m not worried about whether I made the right decision in not passing any more.  I’m much more concerned about making an effort to be social—but that’s a whole different thing.

Seek and Find

  • Posted on November 14, 2009 at 7:17 PM

Alex has invited you to a quick game of seek and find:

 Alex's Seek and Find

 

 

 

 

 

 

 

What’s wrong with this picture?

 

The Game 

 

 

Perhaps I should relate a little bit of history first.  My father buys me books as presents, which I then devour with a dedication not unlike Willy’s consumption of Pokemon videos on YouTube.  My last birthday netted me several additions to Sue Grafton’s Alphabet Mystery series.  C through J were stacked with the bindings facing outward, except for one “wrong” selection.  Being the helpful mother I am, I added A & B, and swapped out the “out of place” book with the appropriate series title.  A and B were obviously appreciated.  Can you catch which one wasn’t?

The answer:

 

The Answer

 

 

“G” is for Gumshoe just didn’t make the grade.  Sorry, Dad!  The story was great, but the cover art has been rejected in favor of the Magician’s Gambit due to the more prominent G.

 

 

 

 

 

Perhaps this one would have been more acceptable:

Proper Picture

I never knew cover art could be that important.

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.***

Discovering SID

  • Posted on October 10, 2009 at 12:00 PM

The Occupational Therapist for the Birth to Three program balanced a little, two-and-a-half-year old Willy on a giant, red ball.  The Speech and Language Pathologist tried in vain to get the toothbrush in Willy’s mouth.  I sat back, absorbing their various strategies and tactics, trying to determine how to use what I was learning at home.

“He’s not going to open,” the speech therapist said.

“Can you really blame him,” I asked, a little bemused.  “Brushing your teeth hurts, and it’s not like he understands how important it is so that he’ll do it anyway.”

They looked at me.  I blushed, feeling like I said something wrong.  Was a parent not supposed to admit that brushing one’s teeth hurt in front of a child?

Then, the OT said the words that changed everything.  “It’s not supposed to hurt.”

Startled, I jerked a little.  “Of course it hurts.”

“Are you talking about cavities,” the speech therapist asked.

“No.  Well, yes, that hurts, too.  But I’m talking about the gums.  Brushing your teeth hurts the gums.”

Their heads tilted in different directions.

“Maybe you’re brushing too hard,” the speech therapist said.

The OT shook her head.  “SID,” she said, a little sad and a little curious.

I felt the muscle in my forehead scrunch tight.  “Brushing your teeth doesn’t hurt?”

They shook their heads.  My tense muscles suddenly deflated, bringing posture to my attention.  My torso was all squishy again.

“Okay, so what’s SID?”

When my little boy was born I couldn’t have imagined that through him, and his brothers, I would learn how to regulate my own body.  It never occurred to me that brushing one’s teeth wasn’t supposed to hurt or certain products could reduce the discomfort.  It never occurred to me that other people couldn’t feel individual strands of hair shifted by the “breeze” created by a door opening and shutting behind them.  It never occurred to me that the sound a fire alarm makes doesn’t shatter other peoples’ thoughts; no, my panic was always attributed (by me and others) to our house burning down when I was little.  I didn’t have low muscle tone as a child; I was weak, scrawny, and had bad posture.  Hundreds of little differences, and I would never have known but for my children.