On Acceptance

The fight is so old and cliché, but let me lay down my take, as long as I care, momentarily.

My current perception, in general terms, is that most people agree that Autistic People deserve love, respect, and civil rights, and we should do our best as a society to provide needed support and treatment.

Just about everyone seems to agree with that. There are rare exceptions at the polar ends of the Acceptance Conversation, ranging from “The Problems Associated with Autism are Purely Social” to “Autism Needs to be Cured/Eradicated Because My Life as a Parent Is Difficult.” Um, these are extremely rare stances to encounter, if only because people with these views don’t attempt meaningful discussion, and most people will agree that they are wrongheaded.

Those with more moderate opinions on all sides tend to imply that those with opposing views fall into one of these Rare Polar Categories, while simultaneously inferring that their opponent is suggesting they are at the polar opposite.

An argument ensues where each opponent denies holding a polar position, and throws out a few vague examples of the moderate-ness of their position—usually things that, broadly speaking, they all actually agree on.

But the devil is in the details, and everybody’s feelings are hurt past the point of being able to have a productive conversation about them.

No, it’s not abundantly clear that acceptance of autistic people and negative feelings towards autism are mutually exclusive ideas.

No, it’s not obvious that you accept your child when you publicly focus on the burdens autism imposes—on NT loved ones, and NT loved ones, only.

No, disagreeing with an autist on a divisive issue isn’t equivalent to paving the way for social oppression for future autistic generations.

No, not every personal expression by self advocates about Neurodiversity is a personal attack on parents.

No, not every response to an autistic POV with an explanation of an NT POV is an attempt to oppress or silence autists.

I’m not saying that any of these ideas are inherently FALSE, I’m just pointing out that they are up for debate, for sure. And what happens is that people will lump these debatable concepts into their own, personal feelings about acceptance, and then REFUSE to discuss them because the issue at hand is Us vs. Them, or someone else making it about Us vs. Them, or Pro-Acceptance vs. Anti-Acceptance, or Pro-Treatment vs. Anti-Treatment. Pro-Respect or Anti-Respect. Obviously. The truth is, everybody is so busy identifying with a philosophy that they are failing to engage.

And it’s boring. Politics. So similar to the US Two Party System that it’s amusing. It says WAY more about human nature than it does about ASD/NT or disabled/nondisabled relationship dynamics. From where I’m standing, anyway.

Trip to the Dentist. Ick.

How to be informative and engaging and… sincere, all at the same time…

I don’t know. I don’t know if any of this is necessary. I don’t need it as an outlet. I’d like to think it’s a good public record of things. For me. For others.

We went to the dentist for the first time, earlier this week. I was apprehensive about someone putting their hands in my son’s mouth, but other than that, I thought things would go smoothly. He’s always good at the doctor’s office. I told him ahead of time what we were doing. He understood.

And then we got there, and there was smooth jazz coming out of speakers mounted outside. I wouldn’t have even heard it, except as we approached the building, my son covered his ears and stiffened up. By the time we got to the front door, he was backing up. A quiet whimper escaped him, but when I gestured to him to take my hand, he ran ahead of me, but kept both hands over his ears.

As I was filling out paper work, my son paced back and forth with his hands over his ears. I was completely unprepared for his sensory aversion. He does have some auditory sensitivities, but. This was the first time I had seen him unable to cope. And the heartbreaking thing was—he usually copes. He toughs it out. He sucks it up.  So if he wasn’t able to cover his ears and suffer briefly and silently… I knew it was extremely unpleasant for him. For the first time, ever, I found myself approaching the staff and explaining his autism. The experience was rather meaningful at this stage in our journey. I have put intensive intervention behind us, and right now, things are feeling strangely typical. I feel, for the most part, that I’m pretty accepting of the fact that my son “still has autism” although, at this stage, it doesn’t seem so terribly disabling. And then a disabling aspect of his autism emerges and totally catches me off guard.

(Shrug)

Life on the Other Side

So how’s life on the other side of Intensive Early Intervention?

Well, who knows, we’re only a few weeks into it. It’s NICE not driving 2 hours a day back and forth between his ABA school and home. He misses his friends, and I may have to arrange a few play dates in the future. I still haven’t written out a proper thank you to the staff, although in person, on his last day, I couldn’t get it out without bursting into tears. Not all loose ends are even tied up, yet.

He’s attending a preschool and we haven’t disclosed his diagnosis. While I cannot say for sure if this is the right decision, it’s really something I want to try. It’s not a light decision at all. I think there is a chance Wylie could benefit from some support, and this is a private school with a professional staff, eager to please their clients. At the same time, I feel very strongly about Wylie being held to the same expectations as his peers, and that we’ll all take a behavioral approach to any problems that arise. I don’t want issues dismissed because of a teacher’s preconceived ideas about the limitations of autism. I’d love to educate some people, but I don’t think it is that simple. People have unconscious biases, and right now, I think those unconscious biases could negatively impact my kid.

And, so far, it seems, so good. When I drop him off, his teacher greets him and expects a greeting in return. She tells him what activity is going on and gives him clear instructions to join. I have heard the children yell out to greet him upon his arrival.

The other day, I brought him in, and I had to prompt him to look up and greet every person we came into contact with on our walk to class. Frustrated, I asked the teacher about his behavior. Oh wait. Rather, I blurted out, “Does he ever talk?”

She laughed. “Wylie? Yeah… he talks.” Like it was a ridiculous question. Like, “of course he talks!”

“Okay,” I said, a little reassured. “Okay. And is he getting along with the other kids?” Wylie hasn’t told me much about his classmates. He has only mentioned one by name.

“Everybody loves him! He’s a bit of a class clown.”

Heh. And her answer still makes me nervous, because Wylie can be a little smart ass. I try very, very hard to be a good parent and curb his back talk, but he’s so damn funny sometimes. Both sets of grandparents just outright reinforce his sass with howling laughter.

I was with my mother the other day, and he had been bossy and selfish earlier, and I was cross with him. I was telling her about his bad behavior, right in front of him. Wylie interrupted me rather abruptly. “MOM! Don’t say that. You shouldn’t say that.”

I actually stopped, thinking maybe I dropped a curse word. “What’s wrong? Did Mommy say a bad word?”

“No… you’re just loud. And boring.” My mother thought it was hilarious. Thanks, Mom. Way to help out. Heh.

Ah well. He’s a cool cat. And I am having some fun spending more time with him, although I do not regret ANY of the time spent driving all over town, from ABA to speech to school, over and over again. The fall semester will start soon, and he will be in preschool full time. It’s crazy to think about how grown up he is. He’s not really a small child anymore.

On Words, Taboos, and Neat Little Boxes

Neurotypical, eh?

I think, by definition, most people are neurotypical. Haha. There ARE typical people out there. I mean. If there weren’t, we couldn’t have the word.

As a substitute for “normal”? Look, dude. I don’t believe in word taboos. Period. It’s a personal thing, I totally respect the opinions of others, but this is my thing. I’m very anti-word taboo. I don’t have the problem with the word “normal.” I get that people can both use it and interpret it with pretty negative connotations, but, yeah, as others have said, I don’t think you get rid of the connotation by changing the word.

I feel the same way about the “r” word, which I call the “r” word out of a sense of not starting a conflict. It has been classified as a slur, and using slurs in public conversation just comes off as… well, you know, distasteful, and a little disrespectful. I say a little disrespectful because on SOME level, I don’t really think I should curb my language for the SOLE purpose of sparing anyone feelings. It’s nice to spare people’s feelings sometimes, but that can’t be a primary goal, ever. Yeah. I’m also big on, like, discussion, and powerful debate. Words over feelings most of the time! Not always, though.

Yeah. I don’t get into the “r” word thing. I listen to half the people who detest the word argue about how they only hate it because they/their child is “DEFINITELY NOT RETARDED” meaning, you know, don’t think they are mentally impaired! Except. Some people are, and they are people, too, jerks. The other half genuinely dislike pejorative language often used to put people down, and often at other innocent parties’ expense. I totally agree that that’s jacked up. 50 Cent comparing a fan to an autistic person in order to insult them? Yeah, what a dick. That being said, it’s a word. Don’t like it, don’t like how it’s used, let’s TALK about it. And we do. We do. I’m not saying people are all talk and no action. I just think in the grand scheme of things, giving words that much power doesn’t do anyone any good. Furthermore, it aint gonna work, dude. It’s just not. Listen to some of these people. “OMG he dropped the r-bomb! What an idiot!” Cute, let’s bust out the slur that the “r” word replaced back in the 19^th century. Jeez. And the cycle goes on and on…

Um. Back to “neurotypical.” In order to segregate people? Cast people as “the other”? Well, yeah, I’m against that. Totally cliché, you know, to say “Aw, it doesn’t matter if you’re autistic or neurotypical, we’re all PEOPLE.” But that’s pretty much how I feel.

No, no, no, I do TRULY understand that there are things I just do not understand about being autistic. There are SOME things that I wouldn’t even understand about being autistic even if I really WERE! Just by not identifying as autistic, I miss out on a lot of stigma and really lame assumptions people make that could affect one negatively. That being said, I don’t believe in special classes of people, and I don’t believe one opinion should be ALWAYS valued less than another, all other things equal. I don’t buy that any random autist out there is more equipped to understand my child than I am- and not because of any romantic notions I hold about parenthood, either. I KNOW that parents often don’t even KINDA “get” their kids- I’m a daughter, after all. But I understand my son’s aversion to eye contact. John Elder Robison had nothing to tell me about the subject that I didn’t already know. I TOTALLY get my son’s apprehension with new people, yet overwhelming and almost too personal relatability once he gets to know someone. I really REALLY get that a sound that is completely innocuous to others can be fucking unbearable to me—although I DON’T think I understand what constant sensory disruption or sensitivity can be like. You know? We’re all individuals.

I don’t necessarily hate labels and I don’t dismiss the importance of group identity, I just think these things can lead to oversimplification very quickly.

I drop the F bomb a lot. That is the title of my post. (ABA related.)

Ugh. I hate it when I’m angry and I feel the need to vent, because my writing tends to suffer from it. I don’t really know that I have anything to say that has not already been said before, but I’m MAD, so I’m gonna express myself. It’s GONNA happen!

I actually came home a little peeved. I started thinking about John Elder Robison’s latest “We gotta move beyond ABA Therapy” post and it really irritated me. This is a guy whose opinion I respect so much. He seems to understand that if we make systematic changes to the way we do business in the world, we could have our cake and eat it, too, so to speak: a world where we have as many disabled people functioning as independently as possible without sacrificing love and acceptance. I’m generally inclined to heed his call to action, because, you know, jeez, I agree with him (ha)!

But I’m not feeling his latest post, and that’s not really why I’m angry, but it was a catalyst, so to speak, so let’s start there.

First of all, there is this impression that ABA Therapy is covered en masse now in the United States. Listen, folks. Let’s talk reality for a moment, okay? First of all, NO. Let’s not even talk about the merits of using the government to force insurance companies to cover a particular medical treatment- let’s just talk about whether or not that is a reality.

I live in a state where we have “mandatory ABA coverage.” Do you know what that means in my state? That means IF your employer is not self insured (which, a whole heck of a lot ARE, including MY  employer) they have to at least offer SOME coverage. My son is covered under my husband’s insurance as well, and they are required to cover ABA… 20 hours a week for 2 months, IF we exhaust ALL. OTHER. STATE. OPTIONS. FIRST. Let me tell you how friggen useless our Early Childhood Intervention services are in my great state. Really friggen useless. They have 25 year olds friggen driving around to individual houses all day, spending 15-30 minutes every 2 weeks using completely unscientific “play therapy” methods that suck ass. Seriously, after a few months, I wasn’t gonna friggen spend more time cleaning my house than these stupid bitches spent trying to coax my autistic 2 year old into sitting nicely and reading a book with them. Ugh. I could get into a WHOLE ‘NOTHER post how Bettleheim seems to be required reading around here for my ECI people- I spent more time listening to “parenting strategies” than anything else with these people. Listen, bia, people who CALL you, to find out why their child is developmentally behind, probably aren’t totally neglecting their child, mmm kay?

So ya, not gonna jump thru hoops for my measly 20 hours a week for all of 8 weeks. What a fucking waste of time and resources. So let’s just say right now that for most people, there isn’t very good access to affordable ABA, even for employed, insured individuals in states where there is mandatory coverage. I just think that’s really important to know, especially since some SLP felt the need to go OFF in Robison’s comment section about how PISSED she was that insurance companies (and apparently the state, as well, since she bitched about her “taxpayer money”) are covering ABA. Yeah. Because it’s not like SPEECH THERAPY ISN’T WAAAAAY MORE WIDELY COVERED BY INSURANCE AAAAND FEDERAL AND LOCAL GOVERNMENTS THAN ABA… Oh wait…

So this SLP is where it started. She also made some RIDICULOUS statements about ABA that are just completely untrue. Listen, folks, is it really that hard to at least learn about the things you criticize before you go ahead and do it? Or are these people deliberately misleading? I like to give people the benefit of the doubt, but let’s face it, this woman is in direct competition with ABA.  

First of all, STFU about the dog training shit, already, will ya? This shit used to be kinda funny to me, but it’s getting WAAAAY old. We don’t call wheelchairs dehumanizing, do we? Even though humans “generally” are able to walk? We’re not tryin to turn paraplegic people into rolly chairs, are we? That’s how fucking ridiculous the dog training shit is. NT kids are influenced by reinforcers, as well. The reason an NT kid can have a nice, natural, intangible reinforcer is because, you know THEY ARE NEUROTYPICAL. WTF! IF AUTISTIC KIDS GENERALLY RESPONDED WELL TO AN INTERNAL FEELING OF SATISFACTION, AND SOCIAL MOTIVATION, AS FRIGGEN 2 YEAR OLDS, WE WOULDN’T REALLY NEED ABA THERAPY, NOW WOULD WE?! YES, I used friggen M&Ms to teach my child tricks! What of it! At least he learned ‘em! We could go back to a much more “dignified” way of teaching, but there probably wouldn’t be a lot of LEARNING going on. My baby was still losing words when we started ABA therapy. He was in the MIDST of a language regression. His FIRST day, he picked up new words, because ABA tapped into his motivation. He didn’t care about pleasing me, he didn’t care about doing something independently, he cared about friggen M&Ms. So. What.

Second, um. Should we really even be talking about going “BEYOND” ABA at this point? Let’s go back to what John Elder Robison had to say-

“I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention.  Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.”   We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.”

Yeah… I don’t buy it. Why are we even talking about new therapies when, as it stands, ABA is “best practice” and is not widely available? I call BS, anyway- every other “behavioral” therapy I’VE ever heard of is deeeeeeeply deeeeeply related to operant conditioning, and very similar to ABA. I think a reasonable argument can be made for tweeking classic Lovaas methods and creating more flexible behavioral programs for children with ASD, but I find the way the issue is framed to be misleading. This isn’t about therapies separate and perhaps superior to ABA. THOSE therapies, as of right now, don’t exist. These are about very subtle differences in behavioral approaches, and it pulls focus away from two very very important facts: that behavioral therapy is absolutely the BEST way to treat autism and should be the FIRST resort when it comes to treating your child, and that people are often unable to access behavioral therapy for their autistic child.

Anyway, I was probably gonna just think all these thoughts instead of expressing them when Landon Bryce of ThAutcast posted a picture of an autist wearing a shirt that said “My Body, My Choice” which caused quite a commotion regarding behavior therapy and how it is inherently “anti autistic.” Some lady even started making violent threats. I’d really like to see her TRY to give me a knuckle sandwich for questioning her decision to forego the behavioral route.

Because I totally question it.

Look, I’m not a judgey person, here. Just don’t pull me into it. Don’t be deliberately dense. Behavioral therapy clearly does not mean “brainwashing a vulnerable autistic child into behaving in some arbitrary NT way, just because being weird is frowned upon.” That’s not what it means. The idea that parents are out there wasting HUNDREDS OF THOUSANDS OF DOLLARS in order to teach their kid NOT TO BE WEIRD is fucking insulting. I was fucking weird, okay? I have the fucking monopoly on weird. I am not some conformist sheeple bitch who fears being embarrassed by my kid. So STFU about how you are a better mom than me because YOOOOOU love and accept your child. Hi, I love and accept my child as well- that’s really a completely separate issue from how I choose to arm my child with important life skills, and an ability to learn in an NT world.

Hey, I WELCOME criticism. I WELCOME a debate. Just read this first and make sure I haven’t already negated your objections, mmm kay?