Thursday, October 27, 2011

Advocacy: Everyone Can Do It.

This story happened a long, long time ago, almost 10 years now. It's still exactly what I think of when people tell me about their kid who will "never" self advocate.

I worked for a few years with a boy who we will call C. C was about 9 when I met him. He was nonverbal, really hated typing on the computer, knew a few signs, and had a PECS book. He had experienced many years of ABA therapy, which is very much therapist directed, and he was growing increasingly frustrated with how things in his life were going. His frustration was pretty clear-he was angry a lot of the time and he was lashing out physically when a lot of demands (or unpleasant demands) were made. His PECS book often didn't have what he wanted to communicate in it, so that added further to his communication challenges. What he was left with was behavior as communication.

I'm pretty sure C's parents weren't exactly looking for self-advocacy teaching, at least not what I do. They had the whole "autism as tragedy" thing going on, were into quackery, kind of seemed to resent C for existing (ok, so very much resented C for existing) and wanted compliance and normalcy, not what I was offering. But C and I hit it off right away & I wasn't completely horrified by his expression of his anger. I avoided getting hit, obviously, but I wasn't going to restrain him or, nearly as bad, throw more and more demands in his face when he was upset. That's silly. It does not work. Typicality is not a realistic goal, but being able to express wants and needs is, and it was quite likely that C could learn a more expedient way to make his wishes known.

When I started working with C, I had a rule for his ABA therapists and parents: if C made clear a want or a need, he gets it. If he indicates that he doesn't want to do same with same or whatever, he doesn't do same with same. If he indicates that he is not ready to leave an activity, he doesn't have to leave yet. He needed to learn that he has some agency after so many years of following other people's agendas.

What's the first thing little kids tend to learn to take power over their lives in small ways? The word "no", right? I wanted C to learn that he could ask for things and get them, and that he could say he didn't want to do things and get that. A lot of our time was spent playing and him indicating he wanted or didn't want things, and me putting into words "No, don't take your block? Alright!" or whatever when he indicated in any way that he didn't like what I was about to do or did like or want something. Showing him that adults do take his wishes into account.

Then I took C swimming one day. This was something his ABA therapists didn't like to do very much because apparently it's a battle to get him out of the pool, he liked swimming in the deep end even though he wasn't an awesome swimmer & keeping him in the shallow end could be meltdown inducing-he could swim, but needed an adult right there. Not a battle I wanted to fight, but I'm not a fan of the Adult As God paradigm. I liked swimming and I liked C, so it was a good time.

We did some laps, we (well, C) splashed around in the shallow end, and 15 minutes before we actually had to leave I asked C if he was ready to get out.


Clear as day, emphatic, and with feeling.

Yeah, we didn't get out of the pool for another 10 minutes. C indicated no, he was enjoying himself, he did not want to leave. And he did it in a way that no one could deny-no is an important concept in making one's needs known, and everyone knows what it means.

He used the word NO a whole lot-they made him do a lot of inane things (touch nose? Really???) and he didn't want to. I don't blame him; touch nose is not exactly a meaningful activity. He started indicating preferred activities & even started helping make a schedule of stuff he'd do during his sessions (or what toys we'd play with & such...interactive toys for demonstrating "I don't want to" or "don't do that" are pretty great).

Then he stopped & started biting again. Being bitten hurts. Biting wasn't getting him what he wanted. "What. Did. You. DO?" was my question to the ABA people.

"Oh, he didn't want to do (some meaningless task) and I hand over handed it."

"...what the hell is wrong with you?" (insert about 15 minutes of full volume yelling about how it was his body and he had a right to not be touched and he had a right to determine his activities, and she owed him one hell of an apology, and he was going to get that apology. Where C could hear it. And where C's parents could hear it, because they were in the same county).

She thought I was kidding. I wasn't. She quit shortly after-apparently apologizing to a just turned 10 year old was beneath her, or to an autistic kid, or being told to by an autistic adult, I dunno.

And C started saying NO! again. Then we started fixing his book & set up a dynavox, but that's a whole other story....


myoho said...

Thanks for this story. This addresses a lot of the issues I have with ABA, and im an teacher aide at a school program that uses ABA. I'm also autistic. I don't use hand over hand, or quiet hands, or quiet mouth, I tend to just ask questions, or offer alternatives when a student displays frustration, but I have trouble convincing other teachers to do so, since its not in the training handbooks. Im not a therapist, I've only worked there for a year, so my opinions aren't counted for much. Stories like this need to be shared, as one of the many examples of verbal language not being the only meaningful form of communication.

Anonymous said...

If I could instill one principle in both autistic kids and their parents, teachers, etc., it would be that of their basic right to use the word "no" and have it be respected, including with parents and authorities.

"No" is the single most powerful word in the English language. We need to be able to use it.

If a child can't use the word "no," how are they supposed to defend themselves against abuse or coercion?

Unless that's the point--that they can't.

Anonymous said...

One of the times I was in inpatient someone told me that one of the worst things you can say to someone is no. I'd say being denied the ability to say no is worse.

Thanks for this post.

Emily said...

Seconding (or thirding?) the point about the ability to say "no" being one of the most important abilities that we have.

Actually, let me rephrase - the right to say no is one of the most important rights that we have. And for some people, it may be or become the most important right that they have.

Thank you for being one of the good ones; thank you for writing this post.

Rob said...

Great post. I've never seen an ABA, or any other, "session," but I hope to get the chance. How many more examples like yours are needed before people come to their senses and *beg* self-advocates to help their kids. Can you put it on TPGA for wider dissemination?

Ole Ferme l'Oeil said...

I remember this story on your old blog and I missed it very much, I'm happy to see it back with that much more details and elements, I think it illustrate a lot of my concerns and things I want to explain to people and I thank you for that, it's a very important post...
I just wanted to ask you if I had the authorization to translate it to french, because it would be very helpful and useful.

Neurodivergent K said...

@Ole Ferme l'Oeil:

I can't do a decent French translation, but if you can and wish to--absolutely do it!

And I posted it bc of what everyone said...NO is so important. NO makes all the YESes actually meaningful.

Ole Ferme l'Oeil said...

Thank you.

praisegod barebones said...

Left a longish comment here, but I'm afraid it got eaten by your commenting system when I tried to sign in w. Google. Anyway, I just wanted to say that I thought this was a great post, and I'm sorry people have been giving you a hard time about it, (Fwiw, I'm the father of a nine year old boy, whose older sister is NT. I've tried to avoid the 'adult as god' thing with both of them, although it can be hard at times. I'm sure that in my time I've done a fair few things that would have made you yell at me...)

Anonymous said...

I'm not sure how I feel about this post (or why it created the hoopla it did on TPGA)... Hand over hand is a way that I use to "teach" my kids stuff. I mentioned in your most recent post that I "do" hand over hand with both my children. That's not strictly true. A more accurate description is I DID hand over hand with my son (unless he clearly didn't want to, I only "do" willing hand over hand with my children).

I currently do hand over hand with my daughter (she's 15 months). An example of this is when she throws stuff off a surface and I ask her to pick it up (especially in a store or somebody else's house). If she doesn't listen to me (maybe she still doesn't understand exactly what I want her to do?) I go over to her and show her (with hand over hand) what I want her to do.

She's usually happy to comply (more so than my son), but with both my children, if they start pulling away or making complaining noises, then I stop and show them with my own hand (not theirs) what i want them to do. I'm really intrigued by you being a "teacher". I put it in quotations because it's still not clear to me if you are a teacher teacher, or a therapist teacher, **lol** Anyhoo, I'll mosey around this site and look for the TPGA reprint to get my ideas clearer...

As for ABA, I also mentioned on your most recent post that we do do ABA with him (VB ABA), but it's *really* child centered. In the country where we live, there is not a lot of support in any way, shape or form for ASD kids. I spoke with dozens of (shady) ABA organizations that were clearly in it for the money and not very well informed. I was fortunate enough to find an ABA consultant who studied, trained and gained experience in the USA, and also has a teenage son who is autistic.

The other two therapists who do the day to day stuff with him also have older sons on the Spectrum, so I feel that my son's team really understand his needs, wants and respect him as a person. Typicality is *not* our goal. I was a little shocked and horrified by how many times I was asked if I wanted to "get rid of his stims" during the interview process of consultants and therapists.

If it's not hurting him or anyone else, then what's the problem with a little stimming? I mean yeah, there are some (loud) stims that I try really hard to redirect (by distracting him with something else), but I guess we're fortunate in that his stims are relatively benign...

I know I'm probably wrong about a lot of stuff, so I look forward to reading more about how to teach from an autistic adult's perspective.

Anonymous said...

I read through to the end of all the comments of the TPGA post. I now understand what the "back story" was. Thanks for the link. I'm off to read the third one you gave me now... :)

Ollibean said...

Thank you for writing this post, respect for every individual's right to say no and be heard and respected should be a given!