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
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
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