My daughter Katie was diagnosed with PDD-NOS when she was 26 months. A follow-up visit to a Developmental Pediatrician suggested a move to the diagnoses of Autism as she fit the DSM-IV criteria. The suggestion was that it would also be easier for me to get appropriate services for my daughter, in which case she was very correct.
Our story is long as most of us who experience this diagnosis and I won't get into the advocacy and struggles we encountered along the way. When Katie was diagnosed my research confirmed that an ABA type approach would most likely produce the best results. I understood that the most benefit would be made if we began early. And I understood that we needed a program that involved my daughter in 30+ hours of intervention.
We relocated rather then continue to debate approaches with our EI team. We enrolled our daughter in the Margaret Murphy Center for Children in Lewiston, Maine. They used an approach that follows the teaching's of ABA, an approach referred to as Verbal Behavioral Therapy, www.drcarbone.com.
Katie began at 32 months for 15 hours a week. She napped after that and I involved her in social activities in the afternoon. There were lots of drills and repetition, but within 2 months, the child who had no need for any expression of language, the child who made no requests, began using sign language. In 4 months she had 20 signs that she was using appropriately.
When she turned 3 Katie qualified for 30 hours of ABA. Three was a tough age. As Katie became more a part of the world and wanted more from it, she also tantrumed more and appeared even more "autistic" to me. We observed an increase in stereopathy, she started flapping, and her tantrums sometimes involved self-injurious behavior. I expressed my concerns during this time. The team adjusted Katie's program and gave her more flexibility which resulted in improved behavior.
Designing a program around a child's particular needs rather the keeping a program "by the book" is very possible and can still produce fabulous results. There are many misconceptions about ABA. Don't believe it, find out for yourself. I called different centers and spoke to parents. I observed and pick the location that I felt comfortable with. I had two other children so therapy in the home would not work for us.
I had difficulty figuring out how to support Katie at home, she wouldn't do for me what she would do at school. But then I'm the mom and decided to keep it that way. I found support from another agency that provided in-home support to children with significant disabilities. We trained her at Katie's school. She played with Katie in the afternoon while I engaged my other children and prepared dinner.
I enrolled Katie in Gymnastics, swim lessons and attended a church with a Sunday School program so she could be with typical peers her own age.
All of these steps were critical in determining Katie's readiness for preschool part-time while continuing her program.
Katie's language soared shortly after enrolling in a preschool program. There were concerns about the acceptance of Katie's behaviors by her peers. Her peers were fabulous, and a community began to be developed of people who understood Katie and accepted her for who she was.
Katie used to be happy playing alone, but now she would prefer to be among her friends more then anything else. Katie is a typical 5 year old child in her kindergarten class. She has many friends and goes on playdates. Another mother picks her up afterschool one day a week for a playdate and then takes her daughter and mine to gymnastics where I meet them after my son's piano lessons. My girlfriend doesn't believe that Katie has autism and thinks it must have been a mistaken diagnosis. I chose not to tell her about what Katie looked like at three.
We no longer use formal ABA techniques. Katie is still working on fine tuning her social and communication skills. But if you were to meet her and strike up a conversation, you would not notice her to be any different then any other child of her age. Katie's outlook is bright as a result of using ABA techniques to help address her autism.
