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An Introduction to ISAAC

A letter by Paul Law, MD, MPH

My first introduction to autism came as a group of clinicians declared that my son's developmental delay and difficult behavior were consistent with autism. Isaac was three years old at the time. He was a smiley, blond-hair, blue-eyed kid that loved Winnie-the-pooh and Barney, yet he wasn't quite like the other kids his age. He rarely responded to his name, gave only fleeting eye contact, and spoke only 5-10 words. He also had episodes of intense rage and frustration in response to very minimal changes in his environment. Although my wife and I knew something was wrong, we were in denial to the extent of Isaac's disability.

Initially, we were devastated by the news. Our hopes and dreams for Isaac's future were shattered. We left that first meeting not really knowing what to do next. We resolved that we would learn everything and do everything we could for Isaac. That first year we probably did the same things that many of you did. We ran ourselves ragged taking Isaac for various evaluations and therapies - pediatric psychiatry, behavioral therapy, speech therapy, etc. Meanwhile, we read everything we could about autism. We subscribed to various newsletters and journals, joined the local chapter of the Autism Society of America, and attended support groups and conferences. Although this was a tremendous year of activity and learning, we eventually reached a point shared by many other parents. We became frustrated at the lack of answers. What causes autism? Why are some children more affected than others? Can it be prevented? What is the best treatment or therapy? Even more discouraging, however, was the lack of research effort and funding directed at answering these questions.

At the same time we were experiencing the frustrations of being parents of an autistic child, I also had the opportunity to experience the point-of-view of the researcher/clinician. I was in my early years of medical training at the Johns Hopkins University School of Medicine when Isaac was diagnosed. Although my initial interests weren't in autism, in my desire to learn more about the disorder I became involved in a small drug treatment trial for autism at the nearby Kennedy Krieger Institute. It was from this experience that I was first exposed to the frustrations of the researchers/clinicians in the field, i.e. lack of adequate funding, difficulties enrolling enough children, poor study design, etc. One issue that was of particular interest to me was the many problems associated with data management. A large amount of valuable clinical information was collected on each child but remained unused due to the logistical problems of data collection, storage and retrieval. Subsequent involvement in other projects as well as discussions with other researchers further confirmed that this was a widespread problem in autism research.

My experiences as both a parent and researcher led to my current involvement with AGRE as the director of phenotypic data (i.e. clinical data). I am responsible for directing the development of a data management system that meets the specific needs of AGRE. In conjunction with several innovative, internet-based companies, we have been able to create such a system. The valuable clinical information collected on each of your children is being processed and stored in such a way that AGRE-sponsored researchers from coast to coast can securely access the information as they need it. In the process of developing this system for AGRE, I envisioned a more inclusive, broader-based system that would meet the needs of the greater autism community. This system, named ISAAC (Internet-based System for Assessing Autistic Children), will bring together clinicians, researchers, and parents to further advance the knowledge and understanding of autism. (Although the inspiration for the project name is obvious, I must admit that the name was not my idea. I give credit to Dr. Kevin Johnson, a fellow clinician at the Johns Hopkins Children's Center).

In its current state, ISAAC consists of a database of electronically formatted diagnostic and clinical tools most commonly used in the evaluation of autistic children. Clinicians and researchers are able to access these forms via the internet. Once the assessment of a child is complete, the data is entered, automatically scored and then saved in an organized database. Future retrieval and analysis of the data can be done easily and quickly. We are currently using components of ISAAC to manage the phenotypic data from AGRE. We are tremendously pleased with the initial evaluation of the system and are excited by its future potential. At a recent CAN board meeting, I was able to present ISAAC to other clinicians and researchers in autism. The response was overwhelmingly positive and we are hoping to expand the system beyond the AGRE project in a few months.

My vision for ISAAC is that it will become a valuable resource to the autism community by providing a much needed, technologically-advanced information system. In the future, we hope to involve parents directly by allowing them to complete online parent questionnaires commonly being used in clinical settings today. This will enable parents and clinicians to more accurately monitor a child's progress and/or treatment response. With parent approval, this information can then easily be pooled with other information to form a large study group. The hope is that through a combined effort of clinicians, researchers, and most importantly parents we can find some answers that help children now and in the future. I hope that some of you will be the first to use the parent portion of this system.

My son Isaac is now 9 years old. He is an imaginative, conversant, spirited child that loves to draw and tell stories -mostly about dinosaurs. He still isn't like the other kids, but it's O.K. My wife and I have reached a peace about Isaac's disability that not only allows us to accept, but actually enjoy some of his differences. We are still devoted to doing all we can to help him. Just like each of you, we hope that some day the mystery of autism will be solved and that there will answers to those nagging questions.

Paul Law, MD, MPH

 


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