This blog will be our first in a series regarding Research. We welcome guest author Soo Jeong-Kim, MD Medical Director of the Seattle Children’s Autism Center. Dr. Kim explains why we should care about research, and what to consider before participating. In our next blog, we will detail a current research opportunity available in the area.
We know a great deal more about autism than our previous generation did. For example, we know autism is not caused by poor parenting. We know some interventions are safer and more effective than others. We know these because of research. Many important questions are being asked by families and doctors and researchers are trying to answer these questions by gathering evidence, making hypothesis, and systematically investigating to support or reject the hypotheses.
While children and families participating in research studies may not receive direct benefit from the study, research will help us to understand better about what’s going on in our children with autism and what can be done to help them, so that we do not repeat the past, such as blaming parenting for autism or trial of therapies or medications that are proven to be ineffective or even harmful.
What should we consider before participating in research?
Research cannot be done without participation of individuals with autism and their families. Researchers may not able to answer research questions when they do not have enough participants. Most research studies require dozens and sometimes several hundreds of participants to be able to answer questions.
When you decide to contribute to the research, you should be informed:
1. You may not receive direct benefit from the participating in the study. It’s because the study is just to learn more about what is going on with our children with autism (e.g., how much physical activities your child is doing per typical day) or it’s because your child is participating in a clinical trial study that requires half of participants to be randomly assigned for the “placebo” group. While your child or family may not receive direct benefit, your participation will result in better understanding and may also potentially lead to a new treatment intervention (e.g., therapy or medication).
2. Sometimes it takes years before researchers to be able to answer research question. It is not uncommon researchers to repeat the studies to make sure the results from the original study were not by chance. It is known that even with the best evidence, it may take years to develop new treatment intervention.
3. Participation in research studies should be voluntary and after weighing risk and benefit ratio carefully.