Autistic Girl's Parents Respond to Some of Our Viewers' Most Pressing Questions

The first voice output device she had was a Dynavox but that was very frustrating to her because it was a touch screen and it was not always so accurate to the touch and then she would have to go back to the beginning because you have to navigate the screens to get to the category you want. We then moved to a Springboard device and made sure we had one screen that was just the alphabet so she could use that to start to spell. She then surprised us three years ago by taking the device and — on her own — typing a few words to tell us her teeth hurt. We have since tried various smaller and lighter voice output devices.

However, Carly is very conscious of looking "odd" and I think she prefers a standard computer like the other kids have. We would like to move to something smaller and more portable but for now this is what she prefers and it is always on and open and by her side.

We have also had the same speech language therapist with Carly since she was 2 years old and she has been the consistent force in our life since we have had a number of different ABA providers over the years. Functional communication has always been her goal for Carly. We did some sign language and she still uses some today to say thank you, and sorry and a few other words but we stopped because it really isn't a realistic form of communication for her since most of the world does not use it. But since she was 2 years old, she has always had some sort of communication vehicle by her side and we have done our best and have instilled it in anyone who works with her as well that she does not get what she wants until she asks us for it using the communication device at hand (whether that is a voice output device, communication binder that we assembled, etc.) If we did not have anything with us for some reason, we would write down choices for her and she would have to choose one — that is one way we knew she could read. But we have been relentless — Carly works way harder than our other kids!

McKenzie: Along the way, were there clues she was learning as much as she was?

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)!

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