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?

After "Early" and "Intensive": The Next Step

We are making changes in this household.

My son’s time with formal ABA therapy will come to an end soon. At this point, I have no intention to continue it on a professional level. He is scheduled to “graduate” from his school in August.

No decision has been made lightly, despite my moments of rebellion where I insist it’s time to “wing it” already. Oh, just pull the dang band aid off, I think. Throw him in a regular education program already. Sink or swim! Now now now!

I go swinging from both extremes (as usual). Reading blogs by parents who obviously have different perspectives, where they are working on things I haven’t even bothered to worry about. At one point I pull out the ABA Bible, Behavioral Intervention for Young Children with Autism, and I flip through all the programs my son hasn’t mastered.

But I’ve made up my mind about some things. I found him a good preschool. Good on many levels. Some of those levels have less to do with what I think my son needs and more about what would be awesomely convenient for our family. And you know what? I think we’re ready for that type of balance.

I talked to the Director at his school. It really didn’t surprise me that she was supportive—I was surprised she insisted we “fine tune” things with my son, but it doesn’t make me nervous. I feel we are absolutely on the same page.

So where are we at? We have cut his hours back at his formal ABA school, and I’ve already enrolled him at a regular education preschool. He will do two days a week at each school for the rest of the summer. I figure it’s a good idea to see how well he takes to a regular education environment with his typical peers before he leaves his other school behind. NOT that I have any doubt that his ABA school would work with us past his graduation if the situation warranted it, but I LOVE that we can simultaneously  get some practice with his typical peers and address any issues that pop up in real life through therapy.

I’ve done a lot of soul searching about what the end of formal ABA therapy means for our family. It is very easy to say “Okay, we’ll make reasonable progress, and then continue with ABA techniques at home.” It’s another thing to get a real grasp on what “reasonable enough progress” means in terms of ending professional, INTENSIVE services that are obviously helpful. But if he is school ready, I want to push him to do well independently. 

My son has spent two years building enough skills to successfully learn and behave in a school environment. He has pretty effective social and communication skills, but most of his peers are starting to reach a level of complexity he hasn't arrived at yet. I do not think we are done with all professional treatment right now, but we are moving on from the Early Intensive Intervention stage.

The Recovery Controversy

It should be established that more than anything, “recovery” in regards to autism is a pretty loaded term.

Already, “recovery” can refer to many different things. It can mean “cure.” It can mean “the process of healing.” It can mean continuing towards a place of healing. Certainly, on its own, it refers to “journeys” as much as “outcomes” if you get my drift.

But, enter Autism— an obviously real neurological condition with some genetic and other biological markers, but, for the most part, is completely diagnosed based on behaviors. And as the spectrum has widened considerably over the last few generations, it has become clear that a young person exhibiting autistic behaviors may stop exhibiting enough behaviors to be considered autistic as time goes on.

And then what?

Well. Opinions differ.

There are those who absolutely think recovery from autism is a big, fat myth. I have heard from (or just read in blogs and other opinion pieces) veterans who say in ALLLL their time involved in the autism community, they have never, ever, ever met a person “recovered” from autism. Maybe they’ve read about a few—even though the common opinion seems to be “misdiganosis” or “obviously still a little autistic.”

 But it’s strange to take such a hard lined position considering how variable the term “recovery” is. In a discussion recently, a mother commented “Recovery is not my goal. I mean, what IS recovery, anyway?” What, indeed. Without defining it, recovery could easily refer to any autistic person who is no longer disabled by their condition. Do those who deny recovery also think all autistic people face lifelong disabilities?

That’s where another philosophical split emerges. Pushed further, those who doubt recovery often believe it’s simply an inappropriate term—that some children make huge progress and grow up to be adults who can function without requiring a lot of support, but let’s not call them “recovered” mm kay? Maybe they even lost their diagnosis- but they are still autistic, and their brains are wired differently. Personally—I think semantics isn’t really on their side, here, but, hey.

But there are also those who just don’t buy it. They assume any story of recovery is actually a story of either misdiagnosis or somebody lying- either to themselves, or the world. Take Jenny McCarthy’s son for example. This is a woman who swears up and down (although she’s not always consistent) that her son, Evan, has recovered from autism. By all accounts, the onset of his autism was atypical. But unless you are a neurologist who has a copy of his brain scans, you aren’t really in a position to say “He had Landau-Kleffner Syndrome.” Landau-Kleffner Syndrome would fit better with “recovery” since most who acquire the syndrome gain ALL of their language back and catch up socially. Funny, because there are also those who have decided based on the limited video we have of Evan “after recovery” that he still appears to be “a little spectrum-y.” I have no idea if Evan McCarthy has autism, had autism, or is currently disabled by autism. I have no dog in this fight. But reactions to his mother’s claim of recovery definitely are not based on logic, reason, or science. Raun Kaufman is another popular example—a man whose parents developed the Son Rise method, he is clearly a successful man who does not seem to be disabled, but it is not uncommon for naysayers to either suggest he was misdiagnosed as a child or point out that his rigid personality means that he is “at least an aspie.”

There are also those who object to the term mostly for its social implications. I cannot say I really blame autists who find the term offensive. When I first started to learn about autism after my son’s diagnosis, I really thought people were splitting hairs. Science is just on our side—we know that a significant minority (sometimes reported as high as 20%) of children diagnosed lose their diagnosis. But it isn’t like those who are claiming recovery are just making factual arguments, here.

A pretty popular book amongst Autism Parents is Let Me Hear Your Voice by Catherine Maurice. It is the story of a mother who had two children on the spectrum, who recovered from their symptoms through ABA. It’s hard to judge how accurate the story is—as far as I can tell, she used a pseudonym herself and has kept the identity of her children private. Still, it has some wonderful information about ABA. As far as I’m concerned, it’s a must read—but, do it early on. Eventually, her being absolutely terrified that her children would be even a LITTLE different is going to rub you the wrong way. Functioning well and being happy is just not good enough for her—her son better be a popular jock and her daughter better be prom queen.

That’s kind of offensive. Like she couldn’t accept that her kids might be “one of those kids.” Special needs. Not even that—they better not be total dweebs. With discussions of recovery often comes implications that autistic people are second class citizens, burdens on their caregivers, and just plain broken and wrong. That is absolute shit, okay?

Even on a more subtle level, many autists find their neurological differences to be the primary component to their identity. Disability or no, non-autistic parents and professionals shouldn’t be so dismissive about these differences. That’s fair enough. Maybe I’m just heavily influenced by my own so called privilege, but I’m a person-first kinda gal by nature. It has nothing to do with my evolving feelings about disability, and I won’t deny I’ve spent my life as an able-bodied white person in the United States, free from poverty. But, I am me before I belong to ANY collective category. Won’t apologize for it—won’t call you a “person with autism” if you absolutely hate it. I’m still not prepared to object to any appropriate use of the word “recovery.”

I think this is a really important subject to talk about, because people tend to form opinions about autism and treatment in general when they do not fully understand what the recovery argument is really about. Autism is a neurological condition mostly diagnosed based on behaviors. A significant minority of children diagnosed lose their diagnosis at some point. There is no consensus as to WHY children lose their diagnosis, and there are many, many theories. Most children will not lose their diagnosis, and will continue to deal with disabling aspects of autism into adulthood, but even so, may live a fairly typical life and overcome or adapt to their limitations with the right support.

Recovery is a loaded term—but oversimplifying the debate just leads to misinformation and misunderstandings.

Adventures in Communication: Ped's Office Edition

Things have been a little hectic around here. Or I’m being lazy, I don’t know. It’s either the world sped up or maybe I slowed down, but it’s been kinda hard keeping up lately.

My little man got sick again. He is taking it well enough. In fact, he became rather articulate about his wants and needs. I mean, he’s being rather bossy! It’s kinda cute. For now. Heh.

I took him to the doctor early in the week. I haven’t been the one to take him to a doctor’s appointment since his 2 year check up a year ago. Now, as a 3 year old, people sort of expect more social and communicative behavior from him. It was kind of an interesting thing to watch.

“Ooh, Cars, Mommy!” he exclaimed, pointing at the TV screen as I signed him in.

“Yeah! Go sit down, and I’ll be right there.” And he took a seat by the TV. For a little bit. Then he got distracted by the fish.

“Oh, fish!” He started tapping on the glass.

“Wylie, don’t do that. Count them, or something.”

“Okay, one, two-“ he begins, tapping the glass as he pointed to the fish.

“Oh, okay, no- hey! Why don’t you go back to watching Cars?”

Wylie looked up at me with a pout. “…I sitting here.”

Aw. “Okay, well, don’t bug the fish. Hands on the seat.”

He actually put his hands on the seat. Ha ha.

When we got in to see the doctor, he was very talkative.

“Hi!” he said to the nurse.

“Hey, buddy! How are you?”

He thought for a minute, a little stumped. Finally he said, “I am 3.”

“Oh, you’re 3! But how are you doing, bud?”

“Um… My name is Wylie.”

Heh. Good trying, dude.

His most autistic moment was probably the meltdown he had over a Looney Tunes smock he was given to wear. It actually caught me off guard—he liked it until I put it on. He got hysterical and ripped it off. I gave him a moment and then I gently tried to convince him to wear it.

“Put it back!” he screamed.

“It’s got Looney Tunes. Look! Bugs!”

“Nooo!” he started on some melodramatic sobs. “No, I can’t have it right now!”

Wow. That’s officially the longest sentence I’ve ever heard come out of him.

So, at this point I give up on him, but he still keeps his eyes on the smock. He’s sitting in Spongebob undies (POTTY TRAINED!!) and socks.

“How bout… a outfit?” he suggests, pointing to his folded up shirt and pants. And at that moment, his pediatrician pops in and pooh poohs the smock.

“I don’t know why, kids either love it or hate it.”

Heh. And there you have it.  On our way out, some woman offered him a sticker. He just stared at her for a few seconds, then slowly turned towards the stickers. I was about to prompt him to answer her when he finally said “Angry birds?”  She picked out the Angry Birds sticker and handed it to him.

“Thank you.” Uh huh. He says thank you.

So, that was one little adventure we had. Thought provoking, for my own personal reasons, but for now, here’s the anecdote alone. A few months ago, he had one full sentence, taught to him at school. Now he blurts out exclamations and negotiations in order to talk his way out of Looney Tunes smocks. He had a whole arsenal of nouns a while back, and not much else. A few months ago.

My baby’s coming along.  

Have We Come Far Enough?

 It’s hard to say how I feel a lot of the time. My experience is simply that; my experience. But I’m feeling less and less like “autism mom” these days.

               

 Wylie has blossomed over the last few months. He is delayed. He is autistic. Um. But. I don’t know. I don’t think I worry about him in the same way.

                 

There’s so much to come, no doubt. I’m not saying this is the end of our journey. But he has been doing ABA for almost two years now. He is initiating social interactions with other children. He knows enough academically to participate in preschool. I’ve always had a “go-with-the-flow” personality—which has left me super anxious with the arrival of my first child, and the arrival of a diagnosis I was completely unprepared for 2 years ago. But I’m ready to give in to my natural instinct. I’m ready to just not worry so much about it.

               

 Wylie is coming in and out of the room right now. He’s playing. Gave up on the iPad for a second (there are zero autism related apps on it- he likes to bowl, or watch old Doritos superbowl comercials. I never realized how many dogs were in Doritos superbowl comercials.) I asked him if he wanted to finish his chicken. “It’s too hot!” he said.

              

  “Nuh uh, it’s not too hot, it’s been sitting here for a while, dude.”

             

    “…it’s too cold.”

            

    Uh huh. Smart ass.

             

   He’s too cute. I don’t know who taught him to exclaim “Potty time!” as he rushes off to the bathroom. Yes, it is indeed potty time. I was sort of flabbergasted at how smoothly potty training has gone. He was a little resistant in the beginning, but a few weeks of less than intensive training, and he’s a big boy now, I guess.

              

  I worried about it. I dragged my feet with starting it. And the director of his school shot me an email. The gist was, “Dude, potty train your kid. He’s going to real school soon, and he should be potty trained.” So we collaborated with the school and boom. Potty time.

              

  Have I been underestimating Wylie? If anything, I’ve always thought of myself as overly optimistic. I happily go on thinking about how great Wylie is. Brilliant. And then somebody says they are struggling with some concept Wylie is NOWHERE NEAR, like answering “why” questions. What the heck. That would go way over his head.

            

    And then the director! The Benevolent One. Always suggesting he’s not really that autistic. I’ve pretty much thought she was nuts. I mean. Her plans for Wylie have been GENIUS. She is always a few steps ahead of me. Very professional. Very insightful. But duh, Wylie’s autistic. Look, he’s flapping. He’s on his toes. He’s not talking that much. We had to TEACH him eye contact. Wylie is autistic. No doubt about it.

             

   So when she called a meeting with me to “discuss the future” I knew what was coming. I half joked to the family that she was “kicking us out” of her school. My father scoffed. “He’s not ready for regular preschool.” An idea she had already brought up once before.

            

    All I could do was sigh. I don’t know. When she brought up the idea a year ago, I thought, hmm, maybe plausible. I was just hopeful, and a professional was telling me it may be possible. Then he started attending “pre-preschool” and he had a bit of a rocky start. Well, no. That’s too harsh. There were issues that only became apparent to me when he started attending the program. How behind he is on being able to dress and undress himself. How limited his diet was. The fact that he wasn’t potty trained.

              

  But now? He’s getting better at self care- not perfect, but the practice alone has made a huge difference. His language has really flourished and I’ve been unable to catch up with it. A few months ago we weren’t even really saying sentences and now these phrases blurt out of him without hesitation. “Turn the light off!” he squeals. “Oooh, that’s scary!” “Mommy, I’m going upstairs. Come on.” “No, no bath yet. We watch this.” Yeah, he’s adorable.

        

        I went to see her and we had a long conversation. I demanded to know from her, what sets Wylie apart from all those other kids? Who talk more, listen better, eat better. And as we talked, and she explained, I realized how blind I had been, to ignore the very nature of autism. That all these children I have observed over the years- they are all unique, and all have their own strengths, and yeah, their own struggles, as well.

        

        He’s flexible, you know. Not very rigid at all. He fits in well with this family- we’re pretty laid back that way. He behaves incredibly well at school, and can follow basic directions. He’s bright- I mean, he just picks up on things very naturally. And she said that was one of the biggest things that made her think he was ready for regular school. She said, “You know… he knows how to learn. We’re beyond having to teach him.” And I knew exactly what she meant.

           

     “The other thing,” she said, “is how he has formed peer relationships, and he looks to his peers to learn now. He didn’t always do that, you know.”

       

         Well, yeah, I know. Somewhere in the last several months, Wylie started to figure out other children were good for something. He started to like to play with them, and imitate them. In fact, the honest truth is he started picking up autistic behaviors because he was copying his peers. Haha. No biggie. He talks about all his friends at home, and he’s very popular when I bring him in in the mornings. I mean, really. He always starts something fun. My kid makes other kids smile. I’m so proud.

              

  I started to become more comfortable with her ideas. I know my kid. I know he will be receptive to his peers as models for him. I think he’ll start to catch up with more practice. I just have seen things come so easily for him that I believe he will meet us wherever we set our expectations.

         

       So that’s where I am, right now. No guarantee that’s where I’ll stay, but for now, there you have it.