Tuesday, November 15, 2011

And now, I draw the line on this blog

In its 4.5-year existence, this blog has featured 658 posts. A couple of dozen still sit there, as drafts, ideas started but not completed, probably some rants begun and then fizzled away. A grand total of 280 of those posts have been about parenting, but 310...almost half...have been about autism. Ever since our oldest boy received his diagnosis at age 3, a diagnosis I had long anticipated, our parenting has, indeed, been knowingly about autism. Before that, it was also about autism, but we didn't know it yet.

The bytes and bits here have chronicled our lives--the ups and downs, the roller coasters--the fears and worries, decisions and realizations big and small. Through it all, we've had help. Support from insightful and caring autistics who have stepped in every time I've asked to let my son know that it gets better. Support from parents with whom I may not always have agreed but whose thoughtful insights have sometimes been revelations.

Writing here has involved catharsis, enlightenment, missteps, and moments of epiphany. It has been one of my deepest pleasures and greatest needs. But my son is now 10 and a half. I've noted recently that I cannot in good conscience continue to write about him while maintaining my sense of what I owe him as an individual and to respect his personhood. My other sons are also getting older, and I am becoming acutely aware of the need to maintain their privacy, as well. I will continue to blog, but not specifically about them or about our lives, and not here. While our lives less ordinary continue, this blog has run its course.

One thing I've always noticed about blogging is that it's not my posts about our personal lives, about our upheavals, that attract people and pile up the comments. It's always the controversies, the things that anger people, the posts that cross some line that divides...those are the ones that get people to read. Frankly, while I write posts like that compulsively when I come across something that raises my ire, I've always found it off-putting that people generally don't seem to care nearly as much about, you know, life and all that as they do about fighting with each other. It's not news to me, but it has left me somewhat cynical.

In my penultimate post, I sketched out the core of what I've learned so far in my years in the autism community, most particularly what autistic people have taught me about listening, about individuality, about voices. All change takes time. As we continue to work for that change, fight for that change--and yes, it takes conflict to make it happen--we probably will all, whether we're writing about it or not, continue our fascination with autism as we remain, turning and turning, in its ever-widening gyre.

In the autism community, we're fond of drawing lines

In the autism community, you are required to draw lines. There's no way to ride a fence, park it in the middle of the road. Even if you try--and why would you?--people will beckon to you from either side, try to convince you, or at least get pissed off at you. There isn't a potential line in existence that someone in the autism community hasn't drawn, almost to the refinement of pointillism. The upshot of these lines is that people who can't trace their origins, who have no real investment in doing so, can't quite get a grasp of what autism might be. Obviously, this state of affairs isn't useful to autistic people, especially those who advocate for a better world for themselves and autistic people who come after them.

Where do we draw the lines? Wherever we can find the slightest reason to do so.

  • Parents draw lines when they think their voices don't matter.
  • Autism parents draw lines between themselves and other parents based on parental philosophies more than even garden-variety parents in San Francisco. And that's saying something.
  • Autistics draw lines because their lives have been one slammed door, one sneer, one derisive laugh, one bullying incident, one misinterpreted communication after another.
  • There are lines around and through different diagnoses, enough to slice a community to ribbons if the divisions are drawn sharp enough.
  • There's the disability pissing contest--mine's worse than yours. We suffer more. Your suffering cannot compare. My suffering kicks your suffering's ass.
  • You think that doesn't cause autism? You are completely irrational and a minion of Big Pharma.
  • Are you a positive person with a positive outlook? Get to that side please. This side of the aisle is reserved only for people who are negative--because negativity, you see, is the only honest interpretation of autism and disability.
  • You can talk? You're consigned to "not as important." Only parents of nonverbal children on this side of the line.
  • Wait, did you say something? You're not autistic. Sorry. People who can speak aren't really autistic. You can't speak for my nonverbal child.
  • Oh, you can type? Articulate yourself well? Sorry, you don't count. You're clearly fully functioning and have no voice for people who are truly autistic.
  • Your child's diet is not GFCF? Obviously, you've failed as a parent. Please join the other failures over there.
  • You vaccinate? Dumbass.
  • Did you just say that it's hard for you? Oh, quit whining.
  • You have Asperger's? Why are you even in this tent? People like you? You're not autistic. You're just "quirky," possibly even "cutesie." Also, when you reach adulthood, you don't exist.
  • Speaking of non-existent, I'm sorry, but you can't be a middle-aged autistic person because, well, autistic people didn't exist when you were born.
  • Did you write something positive about your autistic child? Clearly, you are lying and/or willfully delusional. Please, take your place elsewhere. You don't belong with the rest of us.
  • You're grieving the loss of hopes you had? Sorry, but that's not allowed.
  • You have a job, a significant other, an education? You can't be autistic. Autistic people can't do these things.
  • Oh, you can feel for other people? You can't possibly have autism.
  • You say you have a disability, but you're happy? Then clearly, you are not disabled.
  • I'm sorry, I didn't quite hear that. What? You find positives in your autism? That's simply impossible. There is nothing about autism that is positive.
  • Did you just make a joke? You must have been joking when you said you were autistic. Autistic people don't have a sense of humor.
  • Oh, you had a bad day because of autism, yours or your child's? Nope. Only the good stuff here.
  • Oh, I'm sorry...those autistic people can't talk to you because they have nothing to say that might someday open a door for your autistic child.
  • You don't worry that autistic people might read what you say and perhaps find it offensive? Oh...you say it's because truly autistic people can't read, much less feel offense?
  • That woman over there thinks that behavior is communication. She's obviously deluded and doesn't realize that her child is simply toxic and that's the autism talking, not the person.
  • If you don't think autism stole your child, you are living in a land of rainbows and unicorns. Slap, slap. Wake up. You're an idiot.
  • Your child is mainstreamed? Not autism. 
  • If your experience with autism isn't my experience with autism, then you're not on my side.
  • If your experience with autism isn't my experience with autism, you cannot have my trust, and I will judge you.

In other words, in the autism community, if you haven't drawn a line, positioned yourself on one side or the other of a million tiny divisions, staked your claim and marked your territory, well...clearly, you're not paying attention.

Do I have lines? Yes, I do. Here are my lines:

  • Respect autistic people and listen to what they have to say. Period.
  • Make no assumptions about capacity, but always assume potential.
  • Do not second-guess the personal experiences of others.
  • Do not second-guess someone's diagnosis or self identification of autism.
  • Do not write things about my family members--including my children--that compromise their privacy or personhood.
  • Do not expect anyone else to feel as I do about their experiences or mine.
  • Remember that everyone is fighting a personal battle.
  • Remember that disability does not mean "no ability" and that different does not mean "less."

Those are my lines. If I find that someone has willfully or accidentally crossed them, I will have something to say about it. I always have.

Thursday, November 10, 2011

Two posts about anti-vax conspiracies

At the Biology Files, I've written two posts about the interwoven network of anti-vaxx, anti-science, anti-autism entities out there whose echo chamber is so cozy, they seem to think the rest of us can't see it.

On tells us much of what we already know--except had you heard about Mercola's ties to Big Chem?

The other is on a more serious note, tracing the links among the people who are still trying to defend Andrew Wakefield in every available venue while apparently trying to pretend they don't know each other--and don't make these plans among themselves for their transparent campaign.

Wednesday, November 2, 2011

Sunday, October 30, 2011

Autistic people and NTs: Who has trouble reading whom?

I've read quite a bit lately about autism, empathy, and theory of the mind. In the most seemingly unrelated contexts, I come across allusions to how autistic people lack empathy. So I think it's time I asked a question that's been on my mind.

Based on responses to this post and personal experience, I think that autistic people can read nonverbal cues, which are not only about facial expressions, but include tone, gestures, body language, and throwing things. It may be that even as autistic people register these communications, they may understand them without specifically reacting to them. But how often have you found that non-autistic people have significant trouble reading an autistic person's nonverbal communication even though once the context is clear, the message becomes obvious?  

Communications is a two-way street. Who misconstrues more in, say, an interaction between an "NT" person and an autistic person--the autistic or the NT?

Just askin'. What's your experience?

Monday, October 24, 2011

Autism and adolescence: painful synergy

Yesterday and today, I had a conversation on Twitter related to this post about using the word "autistic" as an adjective or a noun.

An autistic adult noted, "I'm an adult autistic and don't think I have said that it's not a disability now that I've got more perspective on coping."

I commented back that, "I think it's possible to have a disability that has positive aspects. I know autistics who consider it disabling."

And another autistic commented that, "I love my . And I acknowledge that it is . Esp. sensory issues and linguistic processing."
This conversation turned out to be one of intense interest to me even more than would be apparent thanks to this sudden non-sequitur (to me) from TH this morning as we were doing schoolwork:
If I could make it happen, I would make it so that no one ever has autism, ever again.
This is from the same child who, only a few weeks ago, sent the following to an autistic boy to show his support:
We talk about it all the time, my parents love and accept me the way I am. But there are others that are like us. Hundreds. Thousands. Maybe even millions! But we must learn to love and accept ourselves! It doesn't matter if were different, it doesn't matter what people call us! And it doesn't even matter when they insult us! Being different is hard at times, but being different is a gift, too! It makes you unique in a good way! So take this advice, Noah! From now on don't feel ashamed or useless! Whenever anyone insults you or treats you badly say: I'm proud of who I am! Or I'm not perfect but nobody is, and I'm a good person! Now, you know that it doesn't matter if your different, but it matters how you treat yourself and how others treat you!
Based on his statement this morning, my son is clearly grappling with his own reality--something he cannot change--while still not wishing his reality on others. I'm sure my face--well, maybe I'm not sure--registered the shock I felt from his observation. I asked him to elaborate, and he did.

I can tell that much of what he was saying arose from his cogitations after watching the Lesley Stahl 60 Minutes segment on autism last night. While the narration of the segment and commentary from Stahl left something to be desired, TH clearly felt a connection to the children in the story. And when Temple Grandin had her brain imaged, he was exclamatory, wondering what was different, how it was different from what they kept calling "normal" in the segment. (As an aside, when did Grandin become someone who has "Asperger's"? I though she had a language delay? I don't buy into the diagnostic divisions, but the current distinction is primarily the language one.)

He expressed to me how hopeless he feels about ever making friends. He doesn't want people to have the same struggles with social interactions that he has. He doesn't want people to find it hard to talk (not a problem for him) or not be able to talk at all. He's anxious and a little sad that he has "only" ever made two friends, and I think he's concerned that even those two may be slipping away thanks to the twin gulfs of distance and time.

Sigh. I know that feeling alienated and isolated comes with the territory not of being autistic, per se, but of being pre-pubescent, peri-pubescent, damned near pubescent. He's expressed other anxieties that he doesn't relate to autism, talked to me about just not feeling quite right in his head, feeling strange and a stranger in his own mind. That sounds alarming in black and white, but I think what he really means is that he feels confused. Who wouldn't feel confused as middle school approached, as puberty's shadow grew on the horizon, complete with all sorts of (to him) horror stories (not from us) about the foibles and confusions of adolescence?

But he's also grappling with being different. He knows he's different. One of the first lucid questions he ever asked me was when he was in kindergarten, again a seeming non-sequitur: "Why am I so different from everyone else?" It was heartbreaking at the time because he was collected enough at that moment to ask a question, and it was the first one to come to his mind. But the answer, "Because your brain is made differently. That's not a bad thing, but it is different," was one that no child--but especially our child--was going to encompass without considerable repetition and explanation. Yet only a few weeks ago, he was proud enough of his difference to write the way he did, to support someone else with a similar difference.

A couple of weeks ago, Dubya observed that "The big difference between turning into an adolescent and turning into a butterfly is that with the butterfly, no one can see you." TH's dual specters of being different (autistic) at a time (adolescence) when many people simply don't want anyone to notice them are a potent combination acting on a plastic, impressionable, sensitive mind. One that's so sensitive, he wouldn't wish this combination on anyone else.

So, we talked. We always talk, although for once, we weren't having an Important Conversation in the car. We talked about friends, how many you need, how brothers and family can be friends, too. How college, with the way it (in theory) raises appreciation for knowledge and reduces emphasis on the finer points of social interaction, will be a place where he'll find friends, find his own. That autism isn't going to prevent that for him. We all have our people, somewhere out there. It just takes the right environment for the good to outweigh any negatives. We even talked about how autism may well underlie some of the way that people advance in culture and technology, how autistic people, in spite of the pain that some sectors of society may inflict on them, are important to humanity, too.

He understands that his autism has benefits, and he understands that there are negatives for him, too. Today, I think hormones and 60 Minutes and maybe a bit of loneliness on a beautiful fall morning led to his expression of a wish that whatever his reality is, he wouldn't wish it on anyone else. Strangely enough, his vocabulary word today was "catharsis." Thinking that perhaps scribbling out his worries in his journal might indeed be a catharsis for him, I had him write a second entry for the day. And all he wrote (given here with permission) was, "I wonder if I will be different in college." That's it. That was the entry.

No one said adolescence would be easy. It almost never is with that much change, the epic reconstruction and rebuilding of a child into an adult. I know mine was a mess for me, from the inside out. But it's looking like autism and adolescence may be a synergistically painful combination for our boy. Insights and experiences from autistics in the middle or on the other side of that metamorphosis are welcome.

Friday, October 21, 2011

Why "Autistics" isn't a bad word

In response to this post from yesterday, Nikki B asked me via Twitter, "Why is using 'retarded' different from using 'autistic', which also has baggage?"

Nikki is someone with whom I've been discussing the use of "autistic" on Twitter, a conversation that I Storified here. She has also contributed a comment to yesterday's post.

As I noted in a comment response on that post, the difference is that autistics have themselves expressed a preference for this term and use it. When a minority community takes ownership of the term (this isn't the first time that's happened; see "queer" or the N-word, which I still can't bring myself to type), the non-minority community doesn't get to determine that it's not OK for them to use it. I'm not aware, however, of anyone's in the disability community having co-opted terms like "retarded" as their own.

Most autistics I know have expressed that their autism is who they are and that therefore, they refer to themselves as autistics, regardless of the perceived baggage it may carry on the part of people who are not autistic. It's the other people, not the autistics, who bring that baggage. The autistics who describe themselves in this way are using the term as a mark of pride. Autistic people get to make this decision because they are The First Persons.

Nikki has her own take on this issue and has blogged it here. In that post, she says, "I am not autistic, and so some may argue I don't have a voice here. I certainly applaud those people who are autistic and who are fighting to make terms such as 'autistics' acceptable, but because there is litte or no precedent in English for using plural nouns in this way except for medical or negative purposes, it concerns me that the result will be opposite to that intended. That is, its use will serve to re-medicalise autism. And that would be a shame when so many have done so much good work in advocating the strengths and community of autistic people in recent years."

My response to that is that autistics use the term "Autistic" positively for that very purpose. Autism has been medicalized to the point that parents of autistic children find that anything but person-first language is offensive. Autism has been medicalized to the point that autistic people can read and hear words used to describe them that include "tragic," "stolen," "monster," and "afflicted." It has been medicalized to the point that when autistic people themselves choose to use the word "Autistic" as a noun, the response from non-autistics is almost one of sheer horror.

Autistic people don't view themselves as walking tragedies. It's probably impossible to transcend "retarded," a word that intrinsically and incorrectly implies some sort of inability to even understand or be aware of how one would go about doing so and one that describes a single aspect of a person's individuality. "Retarded" isn't an identity; it's a perception based on testing, expectations, misunderstanding of potential, and a focus on a narrow range of attributes that ignores a much larger range of possibilities.

Autistic is different. Autistics transcend and up-end the typical understanding of this word every day, and one way they do so is by purposely linking themselves to its use and using it to represent themselves as individuals. And as Christine Zorn, another commenter on the post from yesterday observed, "I don't think the word "autistic" has anywhere near the amount of baggage that 'retarded' has. I can't think of even one time I've heard a person use the word 'autistic' as an insult, or to put another person down. I'm not saying it doesn't happen, but it can even be compared to the word 'retarded.'"

It is for these reasons that autistic people have taken ownership of autistic, using it as the noun form, sometimes even capitalizing it as "Autistic." The goal is to de-medicalize the word, to place it and themselves in a more positive light, to put themselves forth as individuals, as Autistics, who have strengths and weaknesses like everyone else and a right both for their voices and words to be heard...and to choose those words themselves.

Thanks, Ricky Gervais, for the pitch

When I was young, I lived a somewhat sheltered life. My parents never used racial or ethnic slurs around me or not around me, and even though I grew up in a small-ish, very southern town, the only slur I ever learned before middle school was the N-word, which I am myself to blame for having learned. At age 5, rapt with the poetry of rhyme, I was working my way through the alphabet, rhyming with the word "Tigger." When I reached N, my parents became rather dramatic and, let us say, instilled in me a permanent repulsion for the word.

I was in Texas, so naturally, I did manage to hear that term again here and there. But it wasn't until high school that I came across other slurs, mostly having to do with Asians and Latinos and primarily thanks to politicians who used them. Then, in my first professional employment, I learned about other terms involving towels and some anti-Semitic terms. Before that, as an unwashed heathen growing up in an agnostic household, I had not encountered this embittered religious hatred by way of stereotypes and epithets.

Speaking of religion, there is a biblical saying that I think about a lot. You can't touch pitch and not be defiled. Before my parents had to explain to me why I should never rhyme Tigger that way again, I was aware of differences in skin color. Aware, but confused. I watched "Sanford and Son" a lot and, thanks to Redd Foxx's coloration, had determined that my father--with his black hair and dark skin and green eyes--was like Redd Foxx. Society and culture and ethnicity, of course, disagree with that, but I was five, so I'll have to be forgiven. The point is, I was completely unaware of the gulf and instead viewed Redd Foxx and my father as related among humanity. My discovery about the N-word changed all that, and I suddenly became hyper aware that people saw distinctions that separated, rather than similarities that joined.

As someone who has always been more than a tad socially clueless, I wandered through my life unaware of other divides, other chasms, until someone else would use an epithet in front of me and then it would hit me all over again. A new divide to understand. A new cultural chasm of which to be aware. Without these words, these pejorative terms, people were just people to me. With an awareness of these terms came an awareness of hatred and division, and now they were in my brain. My ears or my eyes had, figuratively, touched pitch and I had become defiled.

In spite of my advanced age, I still manage to come across epithets that I know are in some way pejorative, but I avoid investigating the meaning because you know what? Enough with the pitch already. Yes, there are divisions that lead to historic and current oppression, but I don't think either side of whatever division it is needs to resort to hate speech to recognize the differences and the need for bridge building.

One divide that persists is that between the disability community and, oh, regular people. The disability community seems to be one of the last remaining socially acceptable targets across generations. I've had students who've used the word "retarded," talking about themselves, but meaning it comparatively to being intellectually disabled. I've seen people of my generation use it on Twitter, in movies, on TV. This word once had a purely clinical connotation--as in "mentally retarded"--but now some people would argue that its use has become so common outside the clinical realm, simply to suggest "slow" in some way, that it's OK to use it.

But using it relies on the foundation on which the word is built. It relies on a stereotype of intellectually disabled people as caricatures of universal slowness and incapacity. Without that stereotype, applying the appellation to someone else would have no meaning. Without that caricature as its foundation, the word "retarded" used self deprecatingly would not be self deprecating at all. In other words, the core foundation of the word "retarded"--referring to the intellectually disabled--is what gives its current use its meaning.

With an awareness that this term comes with baggage that is an offensive stereotype, I do not use it, in spite of anyone's arguments that the meaning has somehow shape-shifted and distanced itself from actually referring to the intellectually disabled. It hasn't. It can't. That stereotype is inherent in the term. To forget that is to forget about the rights of the intellectually disabled as people who deserve recognition as individuals, not stereotypes.

Words like "moron" and "idiot" have the same connotation. I especially dislike "moron," having seen it used more recently than many may realize in the clinical literature. Idiot, while satisfying as hell with all of those hard consonants, persisted even into recent decades as in the term "idiot savant," used to describe autistic people with perceived "savant" skills. I struggle to avoid using this word, it's so prevalent and comes to me so automatically. Once one has been defiled, it can take an effort of will to avoid blurting out these terms now embedded in the psyche. I understand that not using them takes work because I work myself on trying not to use "idiot." But these terms are loaded with meaning, specifically for the community of the intellectually disabled. Is it PC to argue that we shouldn't forget that meaning? I'd say that it's more accurate to call it apologetics when people argue that the former meanings don't matter.

Why this harangue? I have Ricky Gervais to thank for it. Today, I learned a new epithet. It's one I hadn't known before, either because of aforementioned social cluelessness or because I'm not British. Either way, he's used the epithet, one that's been applied previously to people with Down's Syndrome, and he remains unapologetic about it. His argument is that it no longer refers to people with Down's but that instead it's entered into a second act in its etymological life, one that somehow is absent the shadow of the stereotyping from which it arose.

So, once again, I've touched pitch. I've learned a new epithet and something new about human division. I've seen apologetics in action yet again, and feel that now, in two ways, we touch pitch and are defiled when people insist on using these terms and defending their use. One is that the words become a part of our psyche, like it or not. The other is that our fellow humans don't have sufficient humanity to renounce them.

Thursday, October 20, 2011

Wondering about the autism and type 2 diabetes "study"?

The news release, posted at ScienceDaily, starts like this:
A review of the genetic and biochemical abnormalities associated with autism reveals a possible link between the widely diagnosed neurological disorder and Type 2 diabetes, another medical disorder on the rise in recent decades.
I hopehopehope that this particular foray into the world of autism research doesn't catch fire in the news media (although I know it will with the two irresistible hot-button health issues involved). Why? Read more here.

Wednesday, October 12, 2011

I don't give a damn about my reputation

With thanks to Joan Jett:

I don't give a damn
'Bout my bad reputation
I've never been afraid of any deviation
An' I don't really care
If ya think I'm strange
I ain't gonna change
An' I'm never gonna care
'Bout my bad reputation

Why, you might ask, am I quoting Joan Jett lyrics? Because of a new study asserting that autistic people don't care about their reputations. While I might buy into that conclusion in a narrow sense based on a narrow interpretation of the study results, having before asserted that I'm fairly indifferent to that sort of thing myself, I take issue (again) with this statement from the study:
It has been well established that ASD features reduced empathy

I articulate what I have to say about that assertion over at The Biology Files. Let's just say that I'm getting weary of having the definition of empathy filtered through a single set of assessments developed by a single group that developed their own definition of empathy, when apparently, "neurotypical" people kinda suck at such interpretations anyway. I'm not alone in being an Emily with an encroaching nausea attributable to such weariness. While you're visiting blogs, please visit this post over at The Thinking Person's Guide to Autism, in which Rachel Cohen-Rottenberg nails the fundamental flaw in that definition with incredible insight.