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Thinking Outside the ABA Box

Charlie at Words bookstore in Maplewood, NJ Another night, another book talk for Jim (at Words bookstore in Maplewood), another event for Charlie to attend.

Charlie and I had dinner in a nearby diner while Jim meditated on what he would read and say. We'd planned for Charlie to stay with me while Jim went ahead to the bookstore. But while I was waiting for the cheque, Charlie pulled on his blue sweat jacket and followed Jim out the door.

I found Jim talking to customers and Charlie standing between the bookshelves and the counter, fingers pressing lightly on his ears and a grin on his face. I stayed and talked to people for a bit myself. The owners of the store have a son like Charlie and the dad made a point of showing me a large section of books on special needs children and their families. When I made my way back to the front of the bookstore, Charlie was seated on a stool and quickly got up soon as I asked if he wanted to go in the black car. We said our good-byes and waved at Jim through the window.

Charlie doesn't yet read and we hadn't been too sure of what he'd do in a bookstore. Last night and on a previous visit to Words, he was definitely glad to go into the store and walked up and down the aisles (and crane his neck when he spotted a rack of CDs). I just enjoyed seeing him in the space, looking around and remembered how back in the spring, the school had told us that Charlie would not (as he had always in previous years) be able to go on field trips with the other students "due to behavioral concerns." Like the OT at the library the night before, people at the bookstore commented on how well Charlie was doing and were very surprised when I noted all the trouble he has had at school. Or maybe I should say, all the trouble the school district has had with him.

I've been doing a very lot of thinking about Charlie's past year in middle school and, in particular, about the methodology used. The public school in-district autism program that Charlie has been in for the past three years uses Applied Behavior Analysis (ABA) as its primary teaching methodology.

 In particular, it uses the sort of ABA that many parents of autistic children have felt vital to their child's education and future well-being: Highly structured, data taken regularly and graphed in huge binders (the "raw behavior data" is, though, shredded---I have asked to see it and been informed that this is the policy), emphasis on "appropriate behaviors," focus on decreasing self-stimulatory behavior. The ratio of staff to students is more than one-on-one: There are as many aides as there are students, plus a teacher. Speech therapy and occupational therapy are supposed to be integrated (though Charlie apparently did not do as much speech therapy as specified in his IEP last year as, in the words of the speech therapist, he was often "not available for learning" and the OT left the district in the spring and has yet to be replaced). Charlie has also had Adapted Physical Education daily.

I in particular have clung to ABA because of the magnitude of "behavior problems" that Charlie has had. These have been "textbook autism nightmare without end" stuff and everything got compounded last year because Charlie grew at least six inches and entered puberty at the age of 11. When he was younger, we thought (thought) that some biomedical sort of "treatments" might help, but the effects of these were always short-lived and always faded. Medication has proved helpful for Charlie and a serious change in medication this past June---weaning him off Risperdal, which Charlie had taken since he was 8 years old---seems to have helped him a lot; he's now on some anti-seizure medications, though Charlie's EEGs have yet to reveal any signs of seizures. Time and again over the years we've gone back to ABA after reading up on every other possible educational/relational/behavioral/communicative/etc. etc. etc. therapy. (That is, we have enough books about autism, disabilities, and the like to somewhat rival the selection of books in Words.)

We've been through a number of cycles of "textbook autism nightmare without end" sort of behavior problems. We've done picture schedules and activity schedules, used timers, tried sensory diets, taught Charlie numerous "leisure and play" activities, worked on relaxation and self-calming techniques; taken data up the wazoo, analyzed the data, talked up the data, schemed up new things to do that too often seemed like semi-variations of something already tried. Besides the big medication change (I had always feared to take Charlie off Risperdal due to the possibility of plenty of  "textbook autism nightmare without end" moments and this summer, we did see such, and in spades), Jim and I were determined to help Charlie work on other ways of expressing his anger, frustration, fear than the difficult things he was doing. 

Charlie checking out some CDs at Words in Maplewood, NJ Stumbling and bumbling, we spent the summer following Charlie's lead and becoming much more attentive to live on Charlie time, to give him time and space to process and work through whatever he needed and needs to in transitioning. We also learned how tuned in Charlie is to the emotions and states of minds of other people and to how he picks up on conflict, anger, fear in other people, and reacts to these. The result at home: Virtually no "behaviors," not of the "textbook autism nightmare without end" sort and certainly not of the sort that led to our school district flat out insisting on the helmet and taking recourse in "four person floor control" (but not telling us until two weeks later). 

In other words, Jim and I figured out how to address Charlie's most difficult "behaviors" without behavior therapy or at least the "highly structured ABA." Indeed, at the moment, the helmet and the holds seem to be all that that the well-regarded ABA program in our town's public schools can come up with and, personally, helmets and restraints seem pretty........prehistoric.

ABA helped Charlie to learn when he was younger. Now, on the cusp of transitioning into adolescence and teenagerhood, it seems it's time to leave the tightly-structured, even rigid, style of ABA behind. ABA sort of methods can be useful for teaching Charlie some things now, but a whole school day of it is not simply what he needs. 

That whole school day of ABA has become inappropriate. It's become as tight as a certain blue plastic piece of headgear that gets molded onto my son's head with straps that clip on the top every morning by a (male) aide. And the main reason that people shrink from just taking the d*****d thing off and thinking about how best to teach Charlie is fear, is an unwillingness to change and to think outside the box; to think outside the helmet.

Comments

feebee

Well, they do say that ABA promotes inflexibility and inability to think outside of artificially contrived environments.

(Oh yeah, it does that for the *kids* sometimes too.)

Nicole

weaning off of antipsychotics is hell. They basically dull emotions IME, so when you go off of them all of those emotions come back, and then some- I would have anxiety attacks for several weeks after each decrease, and I stretched the weaning process to a little over a year because I was terrified of just completely melting down if I went off too quickly. It was one of the hardest things I have done in my life, but I have never regretted it.

Is there any research showing that using this sort of intensive ABA program with preteens is successful? I mean- intensive ABA has been shown to be helpful with younger kids. But I don't think there is much of a research base showing it to be appropriate for people over, say, 8 years old? I would think that would give the district pause in implementing it with the older kids, at least in the fashion they are.

Of course behavioral theory applies to all of us- reward good behavior, you'll get more of it. But that theory doesn't always need to be applied within a lab setting- you can do it in more natural and forgiving settings. And to pretend that human nature is as simple as rewards and punishments is, well, awfully narrow minded- even for the behaviorists.

J

I believe it has to do with the way ABA is implemented. It should be individualized to the child, be it in the restrictive classroom or the naturalistic environment. It appears that the program Charlie is in is a cookie cutter program.

fanofyours

There are lots of kinds of ABA-- your school district's is the most rigid I've ever heard of, and I'm not surprised it caused Charlie stress. I hope you won't write off all ABA because these particular providers were awful.

farmwifetwo

The ABA you mentioned is the one my youngest son HATED. Hated to where he actually assaulted - clawed his neck - the ABA therapists in May (started in Oct). Took me to Aug to get them out... long story... took the school 6 weeks (allowed the transfer to school program) to kick them out too.

He's a lovely, happy, mostly non-verbal little boy who's classmates have OFFERED, to take turns playing on the little kids side (Gr 3 on the other side now) b/c he runs and needs to be in the fenced area.

ABA taught as ours were... is IMO CRUEL and unnecessary.

ABA as in Ontario's PPM 140 - ABA in school's, is much better. It uses token systems, social stories etc to teach appropriate social and behavioural skills - not getting rid of flapping etc, the OT helps regulate (sensory issues are dealt with) those (she's and her box of toys are amazing). In the last 2yrs it's been available - and I fought for it for him by threatening to call in the Behavioural team for the school board - my eldest has thrived, and matured both in the classroom and the playground.

Which is why I will continue to fight against ABA for preschoolers until they regulate it, and research it properly - here.

emma

For typical kids it's pretty much expected as they get older to be allowed more freedom and independence and for styles of teaching to change. Maybe that gets forgotten for children within a special education setting??

I stumbled upon a couple of things this morning relating to the use of restraint, just in case they are of interest:

http://www.positivelyautism.com/volume4issue4/section5.html

http://www.pcma.com/Premature%20Call%20for%20a%20ban%20on%20prone%20restraint.pdf

(I was actually reading about inclusion, how I ended up here go figure)

Chris Gennaula

Our experience as well has been that ABA style interventions were most useful when our boys were younger. "Thinking outside the ABA box" is a very appropriate way to summarize a problem I've perceived: I fear that ABA has become a giant "hammer" that causes some to mistake "screws" for "nails".

Niksmom

Yes, as others have said, more naturalistic setting and all that...but, frankly, I think they fuundamental difference is that there is a two-way communication which occurs btwn you and Charlie. Not so at school.

I have always believed ABA in its strictest/purest sense to be backwards. I am of the opinion that you need to understand the communication (the behavior) before you can truly change it in any meaningful and healthy way. It's what's been working with Nik, anyway.

When does Charlie start at his new school?

Kristina Chew

'Course we won't write off all ABA---but yes, the version from this program (which is, as I said, one with a very good reputation in NJ; could even be considered a sort of model for public school in-district ABA programs) has turned out to be sorely lacking.

The new center where Charlie is going does use ABA but I think it is less "tight," and we hope to intercede much much more.

ABA really isn't rocket science---a lot of it is basic good teaching---but this program has stressed too much the theory and not looked closely enough at the students, at the individuals, in the program. I have just found it a really bad sign that the teacher and consultant have yet to respond to any of Jim's and my suggestions----they give suggestions and instructions, but it's a one way street.

WIth one-way communication between the teachers and students, and between the teachers and parents, and between the school district and parents.....

Intake for Charlie is the upcoming Tuesday. I anticipate an actual starting date in the next few weeks.

a parent

ABA definitely seems to mean different things to different people. In our situation the ABA program available at preschool age seemed way too dogmatic, but since it wasn't an option for us (insurance wouldn't cover it and I think tuition for a half-day program was$30K and there was a two year waiting list and my son would have been to old by then), maybe I had a "sour grapes" kind of attitude.

Then two or three years later, when we went to a school that specialized in a "discrete trial" approach (which seems to be another name for ABA to me) the results we saw were not all that impressive. I wonder if that had to do with the staff having less time to make connections since they were constantly collecting and analyzing data.

Now in his full inclusion setting, there's a token and reward system that seems to be working pretty well. His big motivation is trying to fit in with the other kids in his class. I know it's hard work for him and it can be stressful, but it really seems that the continual positive atmosphere is what really makes the difference. Finding that positive atmosphere is the trick, and hopefully Charlie's next placement will have it.

Kristina Chew

@Chris Gennaula, the hammer has really been coming down here---

@Emma, thanks for those links---right now it really feels Charlie's "education" has become all about controlling him, keeping him separated, resisting his own attempts to express and be himself, keeping him in the box..........

Linda Sullivan

Please believe you are so right to follow your parental instincts. "We go with him" should be followed by everybody interacting in any capacity with your son. It is shocking how the "helmet school" neglected to wrap in support and love in every aspect of his day.
Linda

karen d

It still just blows my mind that the district refuses to see the success you had with Charlie all summer *without* the helmet. Ugh. My son (he's 8) left our district's ABA/autism program at the beginning of the 3rd grade because the methods in there were not longer appropriate for him. Yes, it's been a transition and we're still transitioning, but how can we expect our kids to become more flexible if we don't give them any opportunities to be flexible? I hope with all my heart that Charlie's next placement will work for him and that his new teachers will appreciate Charlie for who he really is and not just a list of "symptoms." xo

Phil Schwarz

We were very lucky when Jeremy was a preschooler: there was a non-residential preschool program for autistic kids run by the May Institute which described itself as "ABA", but was *much* more flexible and child-directed than anything I've seen since (including the May's own programs). After correctly diagnosing Jeremy, Margaret Bauman helped us obtain placement for him in that preschool program. We read them the riot act: they were to help us help Jeremy to acquire and develop skills that would be useful to him as he entered public school, *not* to make him less autistic. There would be no endless units of "look at me" or "quiet hands", no extensive units modeling "appropriate" ways to play with toys. Instead, we would work together to figure out how best to get Jeremy the pre-academics, social reasoning skills, and communication skills he'd need for full inclusion back in our home school district -- none of which he was obtaining by immersion-and-osmosis in a regular preschool program the way his nonautistic peers were. And they responded, and worked with us, and 15 years ago, we -- and they -- figured out "we go with him". We let his responses and his interests and the things that motivated *him* steer us on that journey. We worked in triples every afternoon: Jeremy, one of us (his parents), and a teacher/therapist. A favorite game of Jeremy's which we played as part of his program was "Go Get". It was calisthenics for executive function. Jeremy would get a list of items around the house to find and do something with, and the goal was for him to handle longer and longer lists in working memory.

There's a joke that when you tell an Aspie to think outside the box, s/he will look at you funny and ask "what box?" That is how we -- one Aspie parent, and one nonautistic parent -- approached "ABA", and reshaped it to Jeremy's needs.

Club 166

It is always SO frustrating when the so called "experts" are rigid in their thinking, and refuse to see the things that are possible.

Best of luck to all of you as you enter this next phase.

Joe

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