Covert Awareness

“So how’s the little one?” a coworker asked at the beginning of a slow morning.  “I mean, how’s the whole autism thing going? I didn’t know if, ya know, that was something that gets better or whatever.”

I chuckled. Ignorance at its most honest is hardly offensive, I think. Funny, though, coming from a coworker I have known for so long, who knitted a lovely blanket for my son when I was still pregnant. Coming from someone who has met my son several times over the years. But it’s good to ask questions, and I was willing to answer, although the workload picked up before I could get too far into an explanation.

Weeks later, on another shift, with another coworker, I joked about my son’s silliness, pretty much at his expense, behind his back, ha. He’s a quirky kid, to be sure.

“These imaginary friends, man!” I start ranting, shaking my head. “Kinda freakin me out!”

She giggles a naughty school girl type giggle. “You leave that baby alone!”

 

“He’ll be walking! And he acts like he bumps into something! And he says, ‘Oh, sorry.’ And I’ll say ‘Who are you talking to??’ and he’ll tell me ‘Everywhere.’”


More giggles.

“Sends chills down my spine, man. These imaginary friends need to go home to their imaginary parents.”


“You stop teasing that baby!” she scolds, at least half serious. “Isn’t he, like, borderline autistic?”

“BORDERLINE?!” I exclaim, feigning incredulousness.

She laughs. “I don’t know, what do they call it? Like, Asperger’s? Or something?”

“I think they call it autism!”

“Well, there ya go! Don’t tease him for being different, then!”

Ha. These are two people who know me and my family fairly well, as far as co-workers go. We are a tight bunch, and we’ve all known each other for several years. And, ya know, in these last few years, I probably had many opportunities to teach them a thing or two about autism, and maybe if I had taken the time, someone wouldn’t have asked if “autism is something that gets better” or if my child was “borderline autistic.”

On the other hand, I think there is some benefit to being exposed to autism somewhat “blind.” My coworkers knew about my son’s diagnosis. We are a close enough group that they were a core part of my support system in the midst of the diagnosis process. But I’m not much of a “sharer” in person, you know. I tell cute, brief stories about my kid. N I don’t feel the need to “explain” my son’s behavior. I don’t put any of it in context for them. My son’s a picky eater. He talks to himself. He reads. I don’t understand wtf he’s saying half the time. I could say all that, and add, “because he’s autistic,” but, why? What’s it to ya?

One could argue, “Well, that’s a pretty shit job of an awareness campaign. Maybe if you took the time to explain why he’s a picky eater, or why he talks to himself, and really gave people a chance to learn about autism, maybe people would be more educated!”

ORRRR. Ya know. Not. I don’t know, I don’t know for sure, this is just a thought. It occurs to me that when you “explain away” behavior by attributing it to autism, and turn an individual’s life into the sum of their autism symptoms, and prioritize understanding the broad spectrum over understanding real life people, then people just file it all away in their brains, under “Too different, only understand on a superficial level.”

Because these people know my KID, ya know. And the more they know my kid, I think the more they will be willing to open their minds to really learn about disability, and different neurology.

See, to me, “person first,” in practice, isn’t about seeing “beyond” one’s disability, really. It is just about challenging the notion that one starts off as “the other” by virtue of being wired differently. De-legitimizing preconceptions just by not being reactive to them. Screw it.  Behavior has a function, ya know, and those who learn about autism don’t always really understand this concept. Really. Why does Johnny bash his head? Because he’s autistic. Why does Sally scream all day and all night? Because she has autism. Why does Tommy flinch at his mother’s touch? Because he has special needs. And if this is as far as one goes regarding their level of understanding, it is going to be difficult for one to see Johnny, Sally, and Tommy as real kids, with real needs, and real feelings, and real reasons for doing the things that they do.

So I say, let people be a little confused. Let them naturally challenge their own assumptions about ASD, or disability. Let them ask “stupid questions,” because, there are no stupid questions if they are sincere. Always show people over explaining to people, and, whenever possible, lead by example, rather than teach. Not that I’m necessarily a good role model for anything, but that’s just it—I have no answers for anyone, I can only show you what I do, and how I do. Maybe my comfort with and acceptance of differences will permeate. I mean, I’m pretty sure it will. Pretty sure it has.

Strengths, Knowledge, and the Application of Knowledge: Challenging Assumptions

We have been sorting through all the junk in our house, organizing and tossing things. Today my son stumbled upon a DVD that accompanied some dump truck toy he got the Christmas before he turned 2.

“Hey!” he exclaimed, his facing lighting up. “It’s my stinky movie.”

“Stinky movie??” I repeated, dubious. “What does it smell like?”

“No, Stinky is the dump truck! Remember?”

Barely. I certainly didn’t remember his name was Stinky, but sure enough, that is his name on the DVD. I was surprised my son could recall this fact. His dump truck is in a toy box somewhere—he still has it. But that DVD? We watched it once, when we opened the toy, over 2 years ago, and then promptly discarded it. My son wasn’t calling me “mommy” at this point. He had, like, a handful of words at the time. What the hell does he mean “Oh, mom, do you remember Stinky??” Ha. Ridiculous.

He sure is good with names, though…

He has met several of my friends and coworkers, and never forgets any of them. If he hears me mention them by name in a conversation, he chimes in. “Oh, Samuel! I LIKE Samuel! Is he coming over?”

No doubt he is the Ultimate Power Rangers Trivia Master, knowing every Ranger and every villain in every different Power Rangers show existing—and there are a lot of different ones, now. There are unicorns and dinosaurs and shit.

Typical autistic obsession? Potentially totally useless? Perhaps. Perhaps not.

He DOES read. He was playing this first grade level reading game on the computer, and flying through it with ease. “Well, I’ll be damned, you really can read, huh, Son,” I said.

“Yeah. Don’t say ‘damn.’” He didn’t even look away from his game. Cocky little bad-ass.

Parlor trick? I don’t know. What does it mean to be an early reader with no story telling skills and so far no real expression of reading comprehension? Does it have to mean something? Could it be a really cool thing just because it is indicative of the awesome complexities of the human brain?

I am not sure. I have strong feelings that are more instinctual than anything.

 It is still really hard to hold an actual conversation with my son. Our relationship doesn’t suffer for it, but I think his peer relationships do, and sometimes I just panic and start thinking he’s doomed if we don’t get him back into speech therapy.  Although I know that he is a smart kid, I worry that if he does not understand certain concepts verbally, he has no chance of understanding them in some other context. Then I see his natural ability to soak up facts, names, and information, and I am less worried about the verbal skills.

I think I’ve pictured this smart, yet ignorant child, who is “exposed” to less information than his peers because he can’t verbally keep up.  In reality, he is exposed to different things, as well as the same things through different avenues. In reality, his inability to express something in a way that I understand is just not related at all to his actual level of comprehension. I know that on paper it seems I’m talking about things I should have learned in Autism 101—common truths about differences in learning styles, communication abilities, and neurology. I think, however, that a deeper understanding of these simple truths is required in order to face our own biases when it comes to what constitutes as Application of Knowledge, and realize it is not to be confused with Expressions of Knowledge Communicated towards Others. One can apply knowledge without showing someone else how they are doing it. Just because my son didn’t call me “mommy” until he was almost 3 doesn’t mean he didn’t know I was “mommy.” I assumed he didn’t know. It’s possible he didn’t know. This whole Stinky the Dump Truck reminiscence has me reconsidering my assumptions.

Deprived of a Deficit Model: a personal perspective

Um. Here's the deal about me.  I have struggled with my own problems related to my neurology, my whole life. I searched for answers for a long time, theorizing about how I was brought up, heritable personality traits, socioeconomic factors. I had a pretty inflated sense of myself, maybe as some sort of coping mechanism to deal with my feelings of hurt, confusion, and injustice, so I didn't spend much time considering that it was my fault, heh.

I did not even consider neurological issues until well into treating  my son's ASD. It started to occur to me that I fit the description for ADHD, but here I was, a fully functioning adult, learning new behavioral strategies every day. I didn't see an immediate need for an assessment or treatment. For the last few years, I've incorporated routines and behaviors that have compensated a little for my organizational problems.

And now I'm sort of at the point where I'm almost 30, and I don't know how much time I can devote to trying little behavioral strategies here and there for myself, without professional input and maybe even support. I've spent my whoooole life probably unreasonably skeptical of psychotropic drugs, and suddenly I find myself very intrigued by some promising medications.

Because I'm no longer sure I can easily say I'm "fully functioning."

A deficit model has opened my eyes.

I've LIVED without a deficit model. My parents were fairly accepting of a lot of my difficult traits, and they were quick to recognize any legitimate strength I had. I was impulsive, inattentional, forgetful, confrontational, uninhibited. This meant I made rash decisions and often acted before thinking. I was also the champion of performing under pressure, dealing cooly with overwhelming situations, and when there is an emergency in which time is of the essence. For a really long time, it never occured to me how neurologically related my strengths and my weaknesses are. I get lost in these conversations about "Autism as an identity." Too abstract, across the board. First you'd have to thoroughly explore the answers to the questions: What is Autism? What is Identity?  But if I were to start taking straterra, and I became more mindful, would I freeze like all of the normals do when it *really* counts?

I'm impatient, ya know. I sometimes speak positively about my impatience, either with some sarcastic bravado or some downright justification. Haha. I like to act outraged that people waste my time, although I'm chronically late, everywhere. Here I go again, all "haha." It's not funny. It's fucking ugly. That's some diva ass shit right there. And yet, it's my impatience that drives me forward. And never knowing where to start and where I'm headed in life makes me aptly suited for critical situations that sensible people are often completely disabled by. When time is of the essence, and the perfect decision a few seconds too late is worthless, I shine. I really shine. Like. Saving the company from ruin. Saving the family dog from choking. Single-handledly. That's what I do. I just DO the damn thing, because I don't waste time thinking. Psssh.

I'm the hero. You know. That's my role in life that I am most proud of. It isn't all of who I am by a long shot, but it's something I hang a lot of my self worth on, because, it's all I really know that I'm definitely good for. Do you think I don't know what it's like to be made to feel inferior and deficient by unimaginitive and ignorant fucks who seem to think they accomplished something just by having some innate ability they didn't even work for? Seems kinda small minded in a world where progress depends on the presence of outliers. Comparitive advantage, and all that. The world has a lot of sensible people whose frontal lobes keep them nice and functionally stable. It needs a few heroes.

What a glamor skill, eh?? It's all for show. How often does that shit do ME any good? It's not a superior way of thinking, it's just adventageous, ya know, sometimes. Almost never. Heh. It looks real good, tho, when it happens...

Identity. The fuck is that, anyway. Jeez, what if there IS a pill to take it all away? I keep joking with my husband, "playing office" at home, fantasizing about Strattera making a nice conventional job bearable, so that people with shittier cars and shittier attitudes than mine can stop looking at me with contempt just because I can't sit on my ass bullshitting all day and call it a fucking workday, okay?! But just you wait, man. Just you wait.

I'm really starting to think this is a highly complicated issue. Strengths and weaknesses are often simply the same trait in a different context. I realize a lot of my admirable traits are directly related to my behavioral inhibition deficits. Had I been assessed in childhood, and my parents went "hardcore remediation," my whole life might have been different. Maybe I wouldn't have been such a mess. Maybe I wouldn't have even been a spunky, fearless, free spirit. Omg, but maybe I wouldn't be such a mess.

4th Birthday Party

Here we are, another year. Ummmm. Let’s see. My son is four years old now.

Haha. I usually do a yearly update post about where we are right now. But now that my son is four years old, it seems a little impossible to write a neat little narrative about what’s up in our lives.

Today he had his birthday party, and the turn out was, well, pretty typical. If anything, the party flow was pretty enjoyable and seamless, especially considering the professionals were teens working for minimum wage. In so many instances, it is so obvious that my son is different, but I’m actually a little taken aback by how well he fits in, playing with his classmates at a party.

I’m pretty sure he’s pretty good at reading. Haha. It’s hard to tell—I don’t know if he’s fucking with me. Sometimes I could see where he could pick up some context clues and take a pretty good guess—sometimes he’s clearly reading a word, with no information available other than text. Then again, could he be reading small words like “red” and “purple” but memorizing words like “microeconomics”? You never know because he’s a tricky bastard.

There ARE times when I get a little freaked out by his behavior. Sometimes it really does seem like he is just in his own little world. He talks to his finger like an imaginary friend and, heh, I don’t know. It was cute, but it didn’t stop. And, then, I don’t know, his eyes will glaze over and he will sound like he’s whispering to someone, like he’s having a conversation with someone, and it’s really freaky. It SEEMS like he’s completely losing touch with reality. I SUPPOSE it could be as simple as a stim, a script, something I don’t recognize or understand, and so I just don’t get it. Freaky, tho.

I don’t know. Maybe I’m too complacent, but it’s hard to sweat the small stuff. Kid can’t put on his shoes without help. He only asks questions he already knows the answers to. We are just starting to make progress with verbal sequencing and telling a story. Sometimes I think he’s a little lonely, and ultra sensitive. (Shrug) But he orders his own food at restaurants. He’s a whiz on the computer.  He’s excitable, and has a passion for life. He’s really fricken hilarious, and has a smart mouth. He argues with me about who is better—Kesha or Britney. He’s friggen WRONG, by the way. It’s Britney, bitch. I don’t know what his problem with Kelly Clarkson is, he just don’t like her.

Ha. So, shit. I don’t know. Autism schmautism. Flippant, right? Temporary. Hyperbolic. Maybe. Things just seem pretty, er, pleasantly unremarkable right now. Hey, it happens sometimes. I’ll gladly take whatever Easy the universe wants to send my way.

On "Outgrowing Autism"

Haha, I just run my big ole mouth like I know something, or you should care for my opinion, or something.

But I find the “myth” of the “formerly autistic” to be pretty dang plausible.

So here’s the scoop: there were a couple news stories about the possibility of “outgrowing” autism. The studies that were cited may have been new, I’m not sure, but either way, they say about the same as any other study has suggested- that there is a significant minority of autistic children who grow up to be adults who don’t meet the criteria for autism.

Several influential bloggers reached out to counter the sensationalism, and I don’t disagree with that. The headlines suggest that a big ole chunk of people who are diagnosed just grow up to be normal by adulthood. People are picturing nonverbal school age children spontaneously catching up to their peers by the time they are leaving high school. Reality is probably more like, mildly affected children with average IQs who go through some sort of intensive treatment sometimes don’t seem very autistic later in life.

John Elder Robison suggests that this is pretty much entirely due to coping strategies and the ability to compensate with other skills and resources. He explains how he was definitely disabled as a child and now he really isn’t disabled as an adult. He explains that many, many autistic people reach independent functioning without any sort of accommodating support necessary. It’s a myth that all autistic people experience lifelong disability.

Then he goes on to point out just how well these “formerly autistic” individuals did in this study:

“I’ll offer another point of perspective.  All the same tools used for the kids in this study have been used on me. I’ve been tested repeatedly with the most recent round being last August.  In that ADOS screening, I was still above the ASD diagnostic threshold.  In the facial recognition tests, I was also well above threshold.  In the social function, I was above threshold.

The thirty-four kids in the study therefore tested less disabled than me, and I am not really disabled in daily life.  But my differences still show up on the tests.”

His conclusion? “Some of us do an excellent job of masking disability, especially in middle age.”

What???

No. I could be wrong, and all. Robison is way smarter and more successful than I. He knows more about autism. He’s actually autistic.

Still, as my son would say: “But, no!”

MANY, MANY, MANY, MANY autistic individuals gain enough coping strategies and life skills to be functional, successful, and independent. This isn’t news to anyone familiar with autism. Someone like John Elder Robison is exceptionally successful, and one of the reasons he is so influential is because he is so extraordinary. If you could guarantee that all the newly diagnosed children right now would turn into John Elder Robison, I think parents would be downright ecstatic.


Well. HE’S autistic! The adults in the study who didn’t meet the threshold were waaaaay less autistic than he was.

And I think that’s my problem with this counter argument to the sensational “It’s Possible to Outgrow Autism!” story. We are now arguing about apples and oranges, here. We are arguing about the clinical diagnosis of autism versus… gee, I dunno, being well rounded? Having a good head on your shoulders? We’re back to making the same old stereotypes? “More Autism = Less Ability to Function” “Less Autism = Wildly Successful”? Jeez. I’m not autistic. I haven’t accomplished ANYTHING as cool as Temple Grandin, or John Elder Robison, or John Hall. That’s not what we’re talking about, here. We’re talking about Autism, and its symptoms.

I’m not an expert in neurology by a long shot, but my limited understanding leads me to believe strongly in the power of neuroplasticity. I think the emerging research from child development studies suggest that our culture, lifestyle, and environment greatly affect our neurological development. It seems our attention spans and working memories are changing dramatically every generation, just because of changes in technology and everyday life.

Apply that to autism, and early intervention, and it seems possible to brain train some of the mildly affected children right out of their autism by adulthood.

I’m honestly disappointed in the dialogue. It seems pretty clear that Autism is just this word we use to describe a set of (mostly) behavioral symptoms. By definition, some people that “are autistic,” “aren’t” later in life. But even if you make the argument that behavior changes don’t necessarily mean actual neurological wiring changes… it’s pretty clear that sometimes, that’s exactly what they mean. The brain is pretty flexible like that. So, both by clinical definition and by actual neurological wiring, it’s possible to “recover” from autism, given certain circumstances.

And who cares?! Does this leave people vulnerable to false hopes about the future? Um, why would it. The study definitely shows that most autistic individuals remain autistic well into adulthood. Losing an autism diagnosis isn’t a guarantee for a carefree, successful life. Keeping a diagnosis for a lifetime doesn’t guarantee that your life will suck. Really. That’s how life works—there are no guarantees about the challenges you’ll face. I’m a parent, so I get that “no autism” sounds easier than “even a little tad bit of autism” but then let’s talk about that as opposed to this weird conversation about how autism is some intangible, identifying characteristic, independent of disability, behavior, and brain wiring. “Outgrowing Autism” is an oversimplification, but, uh, so is “Pffft, you can’t stop being autistic, that’s silly.” There’s more to it than that.

On "Wingin' It," Autism Stylie

Okay, so, I’m Autism Mom again, with a new strategy.

Uhh. I don’t know. Look. My super power is “winging it” okay? So, I don’t know how valuable this super power is in regards to trying to raise an autistic son. But I honestly don’t know if I can take any other approach at this time.

The experts all have their opinions, and I value these opinions, like, crazy. I do. The most helpful people in my son’s life are just amazing. But we’re sorta at a stand still right this very moment, because the two people whose opinions I trust the most sorta think my son is “Good enough” developmentally, so to speak, and since I disagree, I have to sort of blaze my own trail as far as my next move is concerned.

So, here’s where we all stand:

Expert 1- My son’s former BCBA, and director of the school he attended. She doesn’t see IEPs in our future at all, and sees his ability to look to his peers as role models, high social motivation, and fairly age appropriate development across the board as a good sign that he will be able to make it in the real world without any special support. She’s in tune to the fact that I’m a bit of a nervous, yet, permissive parent, and with her super assertive nature, I bet she thinks some straight laced parenting would be all he needs in life to flourish.

Expert 2- My son’s preschool teacher. Dude, she has a fancy degree, and she seems to be able to apply that degree. She knows he’s falling behind his peers socially, and knows that because of his restricted interests, it’s been a challenge to get him to practice many preschool level skills, such as drawing, dressing himself, and using utensils while eating. Still, she thinks practice is the key to success, and doesn’t seem too worried about him overall.

Me – I am skeptical of the “practice makes perfect” approach to social skills. I wasn’t autistic. My language wasn’t delayed at all. My parents had waaaay more money than I do and I was in tons of activities, and was exposed to a LOT more social opportunities than my son, and still, my life was a friggen nightmare, man. In fact, I suspect that children who make inappropriate social attempts without being corrected (because ppl avoid conflict- many kids will just start avoiding an awkward kid, rather than correct their awkwardness) runs the risk of practicing bad social skills over and over agin.

At the same time, he seems to foster good relationships outside his peer group, and it’s worthy of noting! I’m not talking about a weird lil professor who only hangs out with adults, I’m saying, he gets along well with his tween cousins, and he usually finds a friend a few years older (6 or 7) at any place there are children. That being said, it’s very likely that I’m just not that familiar with the complexities of preschool age play, you know? So, uh, either way… I’m not comfortable with leaving it up to “practice.”

Also, I see a problem emerging (or possibly re-emerging.) He seems to be having more vocal stims, and they are very frequent. I see some “attending” issues on the horizon, and I do not know how to deal with them just yet, but I have some approaches in my head, so, not to worry.

And for now, my immediate action plan is to go a little broader, and just bring a little more structure and productivity in our lives. I’m finding it easier to take a lot of Temple Grandin’s advice to heart, when at one point, I think I found her advice a little on the vague side. She wasn’t being vague; she was being “broad.” Heh. I’ll follow up in detail, but for now, my approach is just to stay a little busier, and help him focus his abundance of energy on hands on projects that can serve as good practice for developmental skills. I think this will make it easier for ME as a parent to make sure he stays engaged, as well, as to avoid him spinning and humming in all of his free time.

I know, it’s not much of a plan. But I’m over planning too far in ahead at this point. This aint no game of chess! Okay, at least, I hope it isn’t. I suck so bad at chess.