Feb. 21, 2008 -- We received an overwhelming number of responses to two stories we ran about Carly, an autistic 13-year-old who has learned to read, write and communicate her feelings effectively.
To answer some of our viewers' biggest questions about Carly's development and prognosis, ABC correspondent John McKenzie conducted an online interview today with Carly's parents, Arthur Fleischmann and Tammy Starr.
McKenzie: How is Carly doing today?
Carly's Parents: First, it is important to know that Carly is not "cured" of her autism. She struggles constantly with impulse control issues, the need to be in constant motion, sleeplessness and many of the other challenges people living with autism face. She is making huge strides, however, through hard work and therapy. I just want viewers to understand Carly still faces enormous battles and is not (nor does she see herself as) "cured" or a miracle. For instance, if you read what she has written, she tells us she feels like her legs are on fire and that there are a million ants on her arms. She also says she would give anything to be able to stop doing things she knows are wrong but cannot help herself from doing, such as dumping out bins of things, etc.
She also uses her typing and spelling ability as a control mechanism. I think she does this because so much of her life is controlled by others. But that makes sense to me anyway — there are many times when I don't feel like talking. At one point she wrote to us, " I am not a dog. I don't do tricks." I get that.
I also want to address a lot of questions we are getting about whether their kids really love them and know how much their mom and dad are different from other people in their life in terms of love and care-giving. I also wanted to know this because Carly never wanted to be cuddled or hugged when she was most upset. I felt sick to my stomach leaving her alone during those times and she still is that way. That being said, she loves to cuddle and hug now on her own terms — when she feels like it — but still wants not to be touched when she is really distraught.
I know how much she loves us because she wrote about it in her bat mitzvah speech and from the questions that she asks us. She knows that we are the primary people in her life, the same way our other kids know as well. Go on that assumption because I feel confident in now knowing that is true, despite how it may look to you. Carly was recently asked some questions by a newspaper reporter where we live and she wrote, "I am lucky, because in my case, I have two parents who have never given up on me."
McKenzie: In retrospect, what were the factors most instrumental in her success?
Carly's Parents: To date, what has been most instrumental is that we have had consistent therapy and dedicated staff. We have integrated several of these therapists into our family life. We have never given up. We have been fortunate in that we have been able to provide Carly a full-time applied behavioral analysis (ABA) program since she was 4 years old, so we stick to evidence-based intervention and do not do other therapies that have never been clinically proven to help kids with autism (floor time, TEACH, eclectic approach, etc.) In fact, there was a study done between ABA and an eclectic approach and kids who got the eclectic approach actually lost IQ points!
I have to tell you also that her greatest gains have come in the past year or so — after we took her out school. As much as she wants to be with her peers, we made the decision to take her out because she was regressing. We sued our school board and won the right to have her ABA therapist with her but, even with that in place, the school system where we live could not provide curriculum and placement for her that worked and I was tired of trying year after year. She had been in and out of several schools and placements. There is no autism stream where we live so her first placement when she was 6 years old was in a DH — developmentally handicapped — classroom, where she clearly did not fit in academically. Bottom line: She is not in a regular school right now so we make every effort to have her with age appropriate peers, and she also has the luck of having a "typical" twin sister, so there are always kids her age around.
We have also been working with doctors over the years using drug therapies to help Carly's impulsivity and hyperactivity. We have had only moderate success going that route and are still searching.
McKenzie: What role did the family play? What specific things did you do at home that may have made a difference?
Carly's Parents: Some families are amazing at providing therapy for their kids. We are not great therapists. Our role has been one of advocating for Carly and securing her the resources she needs. So while we give her love, attention and care, my wife and I do not do the one-on-one therapy that she needs; we leave that to the experts.
We try to integrate Carly into as many family events as she can manage. We have found routines that she loves and that relax her such as bath time, reading books, swimming. cooking (following recipes) and playing games (she now plays Connect Four and Chess). We strive to keep her engaged in activities as much of the time as possible.
We use as much verbal praise as we can and we have learned to talk to her like we would any of our other children. We used to talk about her like she wasn't in the room. That was a big mistake! Also, Carly's siblings love her and are very proud of her. They not only take responsibility for assisting her, but love to give her affection and attention. They also defend her big time when people are rude to her or make ignorant comments, etc. (as do we -- don't be shy to set people straight!)
McKenzie: How did she learn to read and write?
Carly's Parents: We have been working on reading and comprehension strategies since she was 2 years old. We started with PECS and Mayer Johnson tools. Our whole house was full of labels and stickers with everything identified. When we read her stories — some we created with Mayer Johnson software and just regular books — we made sure she sat so she could see the words as well. We didn't just read to her. Much of her ABA programming from early on required her to spell and identify three-letter words. The games I bought her required her to match words and/or numbers. I also bought her a lot of games that had sequence cards, bingo, memory games, etc.
We moved onto flash cards with letters and pictures, having Carly point and move the cards around to spell words. We have used communication binders — laminated pages of pictures and words organized into various topics such as food, play, self-care, etc. that she was quick to navigate.
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)!
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.
We use various "reward" strategies to give her incentive to sit and focus. One example is a token board where she collects tokens for each portion of work she completes. After she collects a set number of tokens, she gets to take a break, play with a toy, have some potato chips (she loves potato chips) or watch Ellen DeGeneres, who is her favorite celebrity. Then, there are times when we use no reinforcers at all and obviously the goal is to fade them completely at all time. She is becoming more proficient, and we're hopeful that in time typing will become easier. Some days are faster than others —her mood will often dictate that.
McKenzie: Did Carly ever use facilitated communication or has she always typed independently?
Carly's Parents: She has never used facilitated communication. Our speech pathologist has never supported this strategy, and it is largely out of favor. We started with picture exchange, simple sign language, PROMPT speech therapy (it's important to remember that Carly's lack of speech is due to a motor-planning issue) — all before she learned how to read and spell.
I am seeing comments online that people are doubting her ability to do this independently. Trust me — we have nothing to gain by misrepresenting her abilities and, while we don't know that all kids with autism will be able to do this, we also don't think that Carly is one in a million. She has been fortunate enough to have consistent, ongoing and intensive therapy for many years — probably long after many experts would have told us to stop — that we weren't getting our money's worth in terms of cost/benefit.
Carly types on her own. We do not cue her except to remind her to focus on days where she is very fidgety. We do not touch her hands or her fingers to guide her. What would be the point of that? Yes, there are often people sitting beside her, but she also often sends us out of the room. She wants her privacy too. She loves to go on MSN with her dad or with other friends and family members and she does not want us breathing over her back at times, just like any other teen. To the doubters out there, she initiates dialogue or thoughts on her own. A small example: she was sitting at our friend's kitchen table last month. It was a Sunday morning and there were many people there for brunch because her Bat Mitzvah had been the night before and we had many out of town guests. She was just sitting there with her laptop open and she wrote, "I want to thank everyone for coming" so I suggested she take her laptop around and show that message to everyone, so then she wrote, "Mom you do it".
When we told her we were taking her to New York to see a doctor there, she wrote, " I want to see ground zero and the lady with the torch." We had no idea she knew about either of these. These are just two small examples of Carly independently taking the initiative to talk to us. There are many more.
McKenzie: What are your hopes for Carly now?
Carly's Parents: We now think and hope she can go to college. She tells us she wants to be a cook and a writer, so who knows? A lot of you are suggesting she write a book. She has actually started a short story called "The Elephant Princess." It is currently 15 or 16 pages long, and it is really imaginative and engrossing. Her character in the story is Carlito, who is a gecko. Once she finishes it, I can ask her if she will share it with everyone.
We obviously want her to be as happy and as independent as possible as well and, really, she will be the one who shows us what is next for her. I think this experience has really increased her confidence and self esteem. I know she is concerned that kids her age look at her funny or that she frightens people with her sounds and her movements. I am hoping she will feel better about herself now that she knows how much she has helped others and that she will continue to do so.