Carly's Parents: Yes. ABA is completely data driven. There is nothing left to conjecture. The therapists have to record meticulously her level of mastery, and she has to reach certain points before she can move on. We rely on our consultants and therapists and we have regular team meeting to chart her progress and determine next steps and goals for her. This has to do with not only her ability to communicate, but also self-help skills, community activities, etc. (We can now take her to a movie!)
The first demonstration we had of her using her communication book in a way that just made us know it was working was this: She could generalize her skills beyond and outside of her therapy sessions one day when she was almost 6 years old. She had had a full day of ABA and was tired of it. She went and got my jacket and her fancy coat for when she wore dresses. She brought me my purse and my keys and then opened her binder and flipped to the pages of logos of stores, etc. and pointed to the McDonalds picture (there were usually 12 to 16 small pictures per page)!
We were so happy about this and as much as I didn't want to go out, we ran to McDonald's as a way to reinforce her efforts. At McDonald's and other restaurants like that, she would grab other people's french fries. We then had to create a "french fry" program, where we got boxes from McDonald's and filled them with fries and set up situations by which we could teach her not to take other people's fries. Now she can walk by people and not grab at their food. We also had to do that with bags of chips from convenience stores, etc. If she ran away and grabbed the chips, we would take her out of the store and start all over again.
We did this a lot but I can tell you that, last week, I took her with me to pick up some things from the drugstore and I talked to her before we went in and I told her she could have one small bag of chips. We went and she picked out one bag. Then she turned around and grabbed a chocolate bar. I told her that was not part of the deal. She put it down. We went to the pharmacy section to wait and she sat down and ate the chips one at a time. She was indistinguishable from the other kids there. I kept waiting for something "bad" to happen but it never did. I then gave her a ton of verbal praise but at a level of a 13 year old. I find that a lot of people talk to our kids like they are babies, and I know now from Carly that she hates that.
We have also done regular psychoeducational assessments. We did one right before her fifth birthday, then at age 9 and 11. We used these so that we would have a longitudinal study of her progress — using the same psychologist for these tests for consistency since we have had about four ABA different service providers over the years. This way, we could track her progress and it showed a steady gain in IQ and intellectual skills.
McKenzie: Describe how Carly types or writes on the computer. How slow or laborious is it?
Carly's Parents: Carly is not always keen to write on her computer. As she has told us, she's not always "on" and she's not "a trained animal." She is a very headstrong teenager. Generally, she types quite slowly using only her index finger of her right hand. When she is very motivated, she can move quite quickly. She says it is very difficult for her to sit still long and focus. It takes enormous energy. It is not unusual for it to take her thirty minutes to have a short conversation.