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

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.