Challenges to the ABA Industry

I found a fantastic article on the dubious ethical approach of ABA. "The Misbehaviour of Behaviorists," by Michelle Dawson. Also found her blog!

In the Swing (or maybe the swim) of Things

Well, we've spent the last few weeks really getting into the day-to-day and week-to-week of homeschooling, and we're starting to put other plans in motion. Finally! There are still some hitches with the schooling schedule and timing, but I think we'll be able to work these out. We're also trying to meet new friends, start to work on identifying emotions, and have been talking together about some sensory issues.

Rose has had one playdate with a new friend who also has Asperger's. It was a blast. We went to the city zoo with him and his mother the other day and had a great time. The kids ran about holding hands and helped one another with fears (like noise and animals). Now they're agitating to go to a larger zoo together (one with a better crocodilian selection), but of course this takes more planning. Rosie's working on learning typing, since handwriting is so frustrating, and she's making fast progress, so she should be able to email her new friend soon.

We've talked about some sensory issues together too - Rose and I watched a video of Temple Grandin's together and the idea of the cattle squeezer just lit her on fire. She's extremely excited and wants to write to Dr. Grandin and talk to her about squeezing. I found plans for a squeeze machine on Dr. Grandin's website (well, one of them), but it's a bit more than I think we can manage to build right now. I was hoping for something simpler and perhaps slightly less intense that can be used at home and not necessarily 'under the direct supervision' of an OT. We might try a weighted blanket first.

I've ordered an exercise ball so that Rosie can sit on it and bounce a bit when doing schoolwork. We'll see if that helps her to sit for longer periods. Plus, Rosie's asked for chew toys - I looked up special sensory chewies at various websites and described them to her, but then she asked if she could just have a doggie chew toy with a lot of small nubbles and a squeak. I can't think why not - I mean other than my initial reaction ("dog toy!"). I imagine I can find one safely made to chew for a person - so we'll try that this weekend.

Things are advancing nicely!

Social Skills Training & ABA

I've started attending a social skills training workshop for parents; so far I'm not too crazy about it. Even before I started to sort out what the different therapies were, I didn't care for the techniques I was reading about, or the specific "social skills" that seem to be required.

I don't see the value, for instance, in forcing kids who find eye contact alarming to make eye contact. Or forcing them out of comfort-oriented behavior like stimming. Why the hell are these "target skills?" I really have a problem with that. For god's sake, teach your child to fake the eye contact if you want to improve how people perceive him or her. Likewise, the reward system is a bit appalling. I have a thinking person to raise, not a dog.

The way in which the social skill set for training is presented to parents is repulsive. It's essentially to try to train an autistic kid to blend in and be exactly like all the other kids. It's that old square peg, round hole business. Why would you want your unique little person pounded down to fit? I have news for them anyway: your unique little person is never going to be like all the other kids no matter what training torment you put her through. Leave her alone!

I can see behavior observation and therapy being effective if a kid has a truly problematic behavior, one that is dangerous to himself or others. I can see it being helpful, with an older child's awareness and consent, if there are moderately problematic behaviors, or ones that the child him/herself wants to work on. The worst thing about a parent or therapist deciding to train a child out of anything other than a dangerous behavior or without the child's permission is the damage to the person - the child's autonomy and dignity. Not to mention the long-term effects of stress - you're talking about kids who have a lot of stressors. If the actual stress response can't be controlled, but only the external behavior to make people around them more comfortable, what you're training a child into doing is bottling up stress.

I'll continue in the class for now, see how it goes, see if there's anything helpful. We'll take the opportunity to work on a skill the ABA way and see how it is - being able to identify the pauses and gaps in conversation, so that Rose can tell when not to interrupt, if she can. With her full consent, of course. I know it's hard for her to identify these things, and without a clear understanding of exactly why it's hard, it's a little difficult to know how to approach improving it. It seems to me that if you're going to try to improve a specific behavior, you ought to know the mechanism behind the behavior in order to approach it in a humane and respectful way. Autistic kids get even less respect for their personhood than the typical kid gets, which isn't much in most families as far as I can see.

I believe this topic makes me cranky.

Family Traits

I was chatting with a cousin of mine yesterday. He's under a tremendous amount of stress right now, and he was telling me about the effects it was having on him. "It takes me half an hour to get socks on in the morning," he complained. "The heels - I can't get the sock straight, and the seam on the toe hurts, and when I finally get it all straightened out, the sock is too stretched out and I have to start again with another one."

Hm. That sounds like someone I know.

Later, he went on: "The freaking lights are screwing me up. Can't you see that flickering? I don't know what's wrong with everybody that you can't see it."

Hm.

Databases and Favorite Things

This evening, I was working on an informatics course I'm helping to write and opened up one of my database design texts to review some stuff. Rosie climbed up in my lap and started asking questions about data flow, read part of a section, and then asked if we could make a database of our own. Um... sure, I said. "We need a REALLY huge piece of graph paper," she said. Her dad jumped in and explained why we have computers - they can do really huge imaginary sheets of paper. Fantastic! says Rosie. Let's go make a database on Mom's computer!

I have to admit I was somewhat bemused, since I was trying to imagine whether this would have been remotely interesting to me as a child. Possibly not, no, but data flow was always interesting. I remember those vacuum tube things that the old-style drive-through bank tellers used were utterly maddening/fascinating to me due to the idea that information went through the tubes. I imagined them expanding exponentially in massive recursive patterns till I went nuts with it. Teh tubes! No wonder I work on the net.

So we made a database of people in the house, listing names, hair and eye color, favorite color, and 3 top fears. When we got all the data in, I tried to show Rosie how to sort the data, but unfortunately I'd somewhat automatically created a key field with sequential numbering. The sorting disarranged the sequence and Rosie had a litter of kittens and a near-meltdown. Well, OK. We'll get into the beauties of data manipulation later. In the meantime, the gaps in some of the fields bug her (the cat's cell phone number, for instance, is a necessarily blank field). Ah, a child after my own heart!

We went to one of the teacher stores as a treat and I got Rosie a big tub of the only toy she's been willing to play with the past three weeks. Her homeschool teacher had given her a very small set of pattern blocks for conceptual math manipulatives - only 30! Rosie kept saying. So now she has 250 pattern blocks and can create huger and more complex symmetrical patterns out of the blocks. I said musingly to Rosie's dad, "I think most people make pictures with these things instead of patterns, which seems really weird," and he laughed and said that's why we were married.

Vitamins... hm...

Based on a comment I'd read on a forum (you can see the probable mistake here), I wondered if B-vitamins and fish oil would help Rosie focus and settle down a bit. After one day of a megavitamin B and that popular fish oil I can't bring to mind right now, she was incredibly easily frustrated and regressive emotionally. I mean, yow.

Now, that could be overdosing the poor kid on B vitamins or it could be total overstimulation due to a play we went to (not the symphony, another event), but in any case it was a marked difference. Vitamin deficiencies - this was the kind of thing I was hoping to get her pediatrician to help with, but no. When we saw him last week, it was pretty much, "Well, congratulations, she has Asperger's, she'll be fine, here's a list of therapists." Well, crap. Of course she'll be fine, but I know I have vitamin deficiencies that make me muddy-headed if I don't keep up on the supplements, so knowing if she does too would be damn helpful I would think. I thought since he was a bloody researcher, he'd have some ideas on best things to do. Bah!

A friend of mine says I expect this cooperative collaboration from people that just isn't there most of the time. That is probably true. I do sort of expect that.

Play Something Nice for Mom!

Rosie and I went to a kids' adaptation of a wonderful symphony, complete with storyteller and visuals. It was a double orchestra, both youth and the regular, and it was a terrific introduction to "how to do a symphony/concert/musical event." When to clap, when it was ok to talk, how the first violin and the conductor are honored by walking on by themselves, the encore. I hadn't really thought about the formal pattern of the event until I saw it through the kids' eyes.

There were booths in the lobby of the hall afterwards so the kids could see and touch the instruments and ask the young musicians questions. It was all wonderful, until... the symphony's sponsor gave away a rather nice recorder to every single child there.

Every single child. Yes. Three hundred and more little kids with recorders, simultaneously tootling and shrieking, in a huge, echoing space. After about twenty minutes, I literally had shudders running up and down my back that I was doing my best to suppress. I thought I was going to cry. I was doing all I could to not burst into tears. And we stayed half an hour after that! because Rosie could not bear to leave all the fun. I know what my personal hell involves now.

Inexplicably, the incredible din bothered Rosie not at all. Or to be honest, if it did, I was too traumatized to tell. If I had remembered to put in the earplugs I keep in my purse it might have helped, but no. I couldn't remember that I had them. When we went home I looked in the mirror and saw that I was pale and waxy, with bruises under my eyes so dark I looked like I had been punched twice. Yeeg. I put in earplugs then, because my ears were - not exactly hurting, but they couldn't stand any more sound. Then I pulled pillows over my head and crashed for two hours.

When I came out of the bedroom, Rosie said, "Mom! I want to learn to play the recorder!"