Thursday, July 12, 2012

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?