Thursday, May 17, 2007

Did I open a can of worms, or what?

What does a proper ABA program do?

Part of the goal of this blog is to share what I have learned about autism and services. One of the lines of investigation I have been drowned in is ABA.

First and foremost, I am not an ABA fanatic. I think it is very useful for very specific types of skills, and needed for certain kinds of children. Not all of those children are autistic. The goal of most ABA providers is to change behavior. The question becomes, which behavior, when, and why?

For us, the point of ABA is to teach Joey to learn, and to provide him with skills he will need to cope with living. ABA is very good for teaching Joey skills he can imitate, repeat, and incorporate. For example, he has learned to respond to questions using discrete trial training. He is currently learning to sit and focus while another person reads a story. He learned to use the potty this way. We reinforce positive accomplishments, and he gets the idea of what he is doing right, as opposed to what he is doing wrong.

Joey needs about five hours a week of this one-on-one engagement that is emphasizing learning and imitation to gain skills. He actually only gets about three hours a week, because as is mentioned elsewhere, it is very, very expensive to have ABA done by a real ABA specialist, as opposed to some college kid who has the same weekend workshop training that I do.

ABA done wrong is dangerous. We had a program in here a couple years ago. They insisted on a very set program of skills, most of which Joey had already acquired, so he was going to be very, very bored. Asking a kid who can count to 100 to count to 5 over and over again is not helpful. You are not teaching that child anything, nor are you reinforcing anything but basic obedience. Joey is not a trained seal. Such a program was not helpful; it was harmful, as it provided no rewards for learning- including learning itself.

Yes, Joey needs to learn that while in a classroom, he needs to be able to sit and focus on a task. However, there is no need to completely eliminate his “autistic” behaviors. This is something our Sunday school teachers are learning. I observed him in class last week, because they are saying he is still having a lot of trouble with group singing and storytime. What I discovered is he’s doing just fine. About half the class lost interest in this loosely structured activity set. However, instead of whispering and giggling to other children, finding toys, or crawling off to sit in another part of the room and ignore the teacher, Joey chose to track. He was displaying the same boredom as the other students, just in his own way. The movement was perceived by his non-autistic teachers as more disruptive (than giggling, mind you). So I told them basically to suck it up and either provide more interest, or leave him alone (only politer, because they have been very helpful and have been very glad to learn to accept and accommodate Joey, and to help his classmates to do so).

Perhaps a point I will always have differences with some others is whether or not the word “intervention” is appropriate. The word does indeed imply crisis. Autism itself is not a crisis, and I am concerned that it is being perceived as a crisis. Autism is not a crisis- the lack of preparation and available support and service is definitely a crisis. But are families who need early services in need of intervention? Are they, in short, having an emergency?

I cannot speak for other families. I can only speak for my own, and specifically in our situation with Joey: we had an emergency. When we began this adventure, we were at the brink of a severe problem. We didn’t just need service- we needed intervention, and we needed it yesterday. We had a child that had been happy and healthy turning into a child who was frustrated and angry. I am not sure how to explain this, standing in my position as a parent, knowing that I am trying to explain this to people who were experiencing developmental first-hand. Perhaps I need to point out the basic difference in the two roles. Children grow up whether you parent them or not.

It is a parent’s role to teach and guide the child how to cope with living, and basic skills such as healthy diet, healthy habits, and functional living. It is the child’s role to learn these skills, practice them in a safe environment provided by parents, and incorporate these skills into a hopefully healthy life. What they do with life from there is up to them (unless you have parents who dictate what you are going to be when you grow up). We end up with many conversations like I had with Andy today:

“Andy, what would like for lunch? Would you like peanut butter and jelly, or grilled cheese sandwich?”
“We can have ice cream after we eat lunch. Would you like peanut butter and jelly, or a grilled cheese sandwich?”
“You need to pick a sandwich first. Would you like peanut buter and jelly, or grilled cheese?”
“Great, we’ll have grilled cheese, with carrots. Do you want apples or pears with your cheese sandwich?”
“We can have ice cream for dessert. Would you also like apples, or pears?”
“Good choosing! We can have grilled cheese with carrots, and pears, then we’ll have ice cream. Does that sound like a good lunch?”

So when I have a child who is frustrated, screaming, and knocking their head on the floor from the frustration, then it is my job to step in- to intervene- an help this child learn skills to cope. What skills are needed? For Joey, he needed to learn to communicate his needs, and skills for venting frustrating that were not harmful to himself or to others. ABA is one method for teaching such skills. In fact, many methods use the basic framework of discrete trials. Speech therapy allows for communication. Occupational therapy helps him learn to regulate his own body and sensory input. ABA teaches him how to learn. Being in school helps him learn to negotiate social situations, group situations, focus, and specific academic tasks. Most “normal” kids do not have speech therapy, occupational therapy, ABA, or preschool at the age of 2 (or don’t need school at the age of 2, though the parents may want it.)

Compare this even to my other child- he will be getting speech therapy because he has some motor planning issues that result in articulation problems. He has some OT to help him cope with sensory issues and motor planning. I’ll start him in school two days a week in the fall- not because he needs it, but because I want him to have some exposure to other children and other adults, so it won’t be completely new when he goes to kindergarden. We do not have an emergency, we’re just shoring up some perceived deficits to make his life easier.

As a parent, watching Joey spiral into frustration, anger, and depression at the tender age of 2 is not only heartbreaking, it is my job to act, and to intervene. This wasn’t just about him drifting off into a world of his own- this was about a child who was becoming increasingly unhappy and aggressive out of aggravation with his inability to communicate and control his own body.


kristina said...

You did open a can of worms but one worthy of discussion, I think! ABA is an imperfect science, and can be highly effective in teaching; too many ABA professionals have done little or worse in showing how it is not the cut and dry Pavlovian business too associated with "behavioral science." It is a much more fluid and flexible enterprise than I think both ABA critics and ABA supporters note.

Club 166 said...

...“Ber.” ...

I think you missed something. Joey didn't want the pears, he wanted "beer". :)

And yes, you have opened up the proverbial worm can.

I think that there are too many things that are labeled "ABA" to make blanket judgements. And anything that leads to less frustration on the part of an autistic individual is a good thing.

Joe said...

>Joey chose to track

I'm not sure I know what this means.

Joeymom said...

My folks used to let me have sips of their beer when I was little. I love good beer. Sometimes I think I need to drink more.

I think there are too many poorly-designed and poorly-run ABA programs. We hated the place we started with- I had enough training and enough experience of my child to know within about three weeks that this was NOT what was supposed to be going on, and I fired them. It has taken us until this past Christmas to find a place that can deal with Joey and run a proper, individualized program for him.

People make a LOT of money off of ABA. I am very, very tempted to run a website about how to make needed materials for free, or far less cost than some of these catalogues and things. Link it up to the several good websites that provide printable materials and ideas, and bingo! Life improved. If you can afford the therapist, which is $40 an hour here, and I think we're getting a deal (the other plae wanted $60 an hour for a "real" therapist).

And one of the biggest problems we run into is that there IS peer-reviewed research to support ABA, so the ABA facists really get nasty when you say you DON'T have your kid in 40 hours of the stuff. But Joey doesn't need 40 hours. He only needs five, with all the other activities he has, both group and one-on-one.

There needs to be some kind of oversight of all these little companies offering "ABA." But there isn't.

Joeymom said...

My apologies, Joe! Tracking is a form of pacing. Joey walks along and/or moves his eyes along straight lines. In teh Sunday School room, he put his eyes almost against the top edge of the shelves and then ran th length of the wall fllowing the straight edge. He will also follow lines in the floor (such as small cracks between planks in a wood floor), venetian blinds, etc- anything that is a straight line.

abfh said...

Just to clarify, when I wrote that some parents are panicked into seeing an emergency when there is none, I wasn't referring to you. Determining whether or not a situation is urgent is, of course, a matter of individual circumstances. My point was that parents should not be led to believe that an autism diagnosis is always an emergency; I didn't mean to suggest that you had made that assumption.

mcewen said...

The expense is catastrophic especially as it's one on one [double time!]
Hence our attempts were half hearted as we were already pouring money out for one on one speech and one on one OT which seemed a priority.
I read up on ABA, RDI etc. found an independent consultant.
He came to our home and was invaluable. He took in the whole family dynamics and gave us multiple suggestions for specific issues were were having.