Monday, March 9, 2009

ABA, Lovaas, and Autism Acceptance

I've been reading around the web lately. It started out on Youtube, watching some ABA session videos. then I saw a "related video" that was called "Slaps, Screams, and Autism" which was actually a video rant about an old article from 1965, the article I posted a couple days ago here.

Having read that article, which painted a picture of Ivar Lovaas I hadn't yet seen, I went on reading about him and ended up at Autism Diva's blog. I read through the comments on her Lovaas/ABA post and some of the comments really got me thinking.

I doubt many people (be they parents or not) think the methods described in the Slaps and Screams article back in '65 are acceptable. I know that I found myself teary eyed and sick to my stomach only halfway through reading it. Electric shocks and slapping to stop stimming behaviors, withholding meals to get the kids to perform correctly (and earn a spoonful of food), slapping and screaming... Horrifying. The photos? Disgusting.

However, the method has evolved a lot since 1965. Modern day ABA doesn't involve shocks or slaps, kids are fed and treated with kindness. It does work, and it's touted as the only real therapy that works for autistic kids.

I have no experience here, Jaymes is still on the CAP (medwaiver) waiting list, who knows if he'll ever get services. This is all just my observations and opinion, so please do take it with a grain of salt.

I've watched a lot of videos, read a lot of ABA success stories. I know people who swear it's the best thing, the only way, their saving grace. In particular, I have watched all of Squid's videos of Leelo, and it's been a really great way to see how ABA works. He can answer questions like "where do you live" etc... Useful stuff, and it's impressive to see.

I know that in daily life, and in his therapy sessions, a lot of us use ABA type methods with Jaymes already. Hand-over-hand, reinforcers, etc. It works. Example being, I want Jaymes ot eat his sandwich. Everytime he takes a bite, I give him a potato chip. If he doesn't take a bite, I eat a chip instead. Eventually he "gets it" and eats the sandwich in order to get some more chips. Ok, maybe not quite ABA, but it works.

I can see where a lot of the Autism Acceptance folks are coming from when they say that they feel ABA is reducing kids with autism to robotic, trained drones or comparing the sessions to dog training sessions. I can understand why they feel that doing hand-over-hand or forcing eye contact would be intrusive and uncomfortable, and not respectful of the patient.

One particular commenter had an excellent point... He or she said something along the lines of "the real patient in an ABA session is not the child, but the parent, who is bothered by the child's unusual behavior."

It's a good point. If Jaymes could talk enough to choose whether to go to therapy (Not ABA mind you, speech/OT/PT) I'm sure he'd say something like:

"I'll go if I have to but here are the rules:

  1. No touching me
  2. I don't have to sit in the chair
  3. No flashcards
  4. No books
  5. I will play with the train and prefer not to be bothered with asking for more track or having to say "Mine" or "more"
  6. No hand over hand
  7. No eye contact unless I decide to
  8. When I'm done with something, I'm done. No cleaning it up or finishing a task.
I'd really prefer not to go at all though, why don't we go lie on the floor and stare under the door of the room where the janitor keeps the equipment?"

I think mother and child are both the patient in any therapy situation. I want Jaymes to talk, and Jaymes wants to be able to communicate his needs and wants to me. I want Jaymes to not melt down and scream and hurt himself. Jaymes wants to play and enjoy life. he can't always control his reactions and emotions and it's up to us to help him learn to do so.

In Jaymes' therapy, we don't really worry about stimming, as long as the stim doesn't interfere with whatever he is doing. My thoughts on the stimming are that Jaymes needs to do it to calm down and relax, and who am I to tell him he can't? I bite my nails, he flicks his blanket back and forth in front of his face. I chew on my thumb knuckle, Jaymes makes "steeples" of his fingers and watches the fingers from one hand interlace with those of the other hand. Sometimes Jaymes spins, sometimes I bounce my foot up and down. Stimming doesn't really bother me in public, I care less about someone I'll probably never see again thinking Jaymes is acting weird, and more about letting Jaymes wiggle his hands in front of his face to balance out the stress being at Walmart is causing him. We'll never BE normal, so why dwell on it?

I don't know where I stand. I think the Neurodiversity movement's "all brains are wired differently and autistic brains aren't broken, they're different" is an awesome way of thinking. I agree. Jaymes isn't broken, he's just not like me or you or Sierra. However, I do not think that this means we should stop any therapies and just let him be who he wants to be. I don't want to sit by and NOT help him learn to talk, to dress himself, to play. I think that by just ignoring the things that he obviously needs help with, I would be condemning him to adulthood in an institution.

It's our job as parents of any kids, autistic or neurotypical, to give them the skills to function in the community. I guess it's a balancing act, accepting your child for who he is vs. wanting to make sure he can go out in public without hurting himself or someone else.

I think respect is important, both respect for Jaymes and respect for everyone around Jaymes. I respect Jaymes' right to think strawberries taste like crap. Even though in OT he's working on eating a more varied diet, I don't think we should force him to eat EVERYTHING we put in front of him. I think mushrooms are foul, he thinks strawberries are foul. A lot of times I think we forget that our kids ARE people, with their own unique set of likes and dislikes. If in therapy, Jaymes just licks the strawberry, then grimaces and refuses any more... well, he tasted it, and he hated it. That's his prerogative. All I expect is for him to try.

On the same token, however, certain behaviors have to be handled, regardless of respecting Jaymes' feelings. I don't care if he thinks it's fun to lock his baby sister in a room and giggle while she cries. His disability is not allowed to cause suffering to his sister. Autism or not, Jaymes has to have boundaries. I won't accept that part of him, the part that takes great amusement in other people's suffering.

I guess that it's all a matter of perspective. Autism acceptance is bound to mean something different to everyone. To me, it means helping Jaymes reach his potential without imposing unfair or unattainable expectations on him. I don't expect him to write his name by the time he hits kindergarten, but I do expect him to be able to say his name by then. (He doesn't yet, but he will, I know he can.) I don't expect him to eat every bite of food put in front of him, I don't expect him to sit at the table silent and still. I understand that sometimes he needs to be allowed to lie on the floor between bites and do his own thing. Irt keps him calm enough to come back up, sit in his seat, and eat with his fork.. So it's fine by me.

I will never be one of the parents who seek to extinguish any "bizarre" or "abnormal" behavior in an effort to make their child "normal." I don't care if people think Jaymes is weird or freakish or gross when he's grunting loudly, or waving his hands in the "touchdown" position, or wearing a pink girly blanket everywhere he deos. Screw them, if they've really got their heads that far up their rear ends. I don't want Jaymes to be perfect, normal, just part of the crowd. I want him to be him, and if arm waving and funny noises are who he is, then so be it.

That's my personal brand of autism acceptance: take it or leave it.


Moonbrained Mare said...


astrid said...

What you wrote is so true. Who are Normal people" anyway? What is it that we do every day that defines us as "normal"? Work, come home,watch a movie, eat, really nothing much.

Life is precious, and it needs to be accepted as it is: a miracle. A child with autism is no different from a normal child. If people lived each day treasuring what they have, they wouldn't be so concerned comparing their worth according to some pre-existing standards that honestly speaking, mean nothing.

DRS Are The Best said...

This is the first post on your blog that I have read, and I really like what you have to say. I have toddler twins (b/g, nearly 29 months old) who are both on the spectrum and they have an older brother (age 4) who is not directly affected by autism. We are quickly learning how we have to alter our expectations for the twins as compared to their brother, but we also expect them to learn.

They are just starting an ABA program and we're hopeful that it will help -- the groups that we are working are convinced they are both good candidates for this learning technique. I hope to continue reading more of what your experiences have been and wish you all the best in all choices you make.