Guest post by Allison Wainer, a member of the 2011 Autism Speaks Dennis Weatherstone Predoctoral Fellowship Program.
When I was in high school, I had the chance to join Best Buddies, an amazing organization that helps create one-to-one friendships for individuals with intellectual and developmental disabilities. Through this program, I was lucky enough to become friends with Mike, another high school student. Mike had autism. I remember conversations with his parents about what autism meant to their family. They spoke about the challenges they faced trying to find appropriate interventions and support. These conversations were, and continue to be, part of the driving force behind my decision to pursue a career dedicated to researching and improving access to autism interventions.
Fortunately we have learned so much about autism and autism interventions over the last 25 years. Yet, we also know that accessing effective interventions continues to be challenging, and for many families, nearly impossible.
I feel very grateful to Autism Speaks and the Weatherstone Predoctoral Fellowship for giving me the opportunity to study ways to make autism interventions more accessible for children and their families. [Read a description of Allie’s research project here.] I also feel lucky to be working under the guidance of Brooke Ingersoll, PhD, at the Michigan State University Autism Research Lab.
This fellowship has given me the chance to study an internet-based program that teaches parents how to use strategies to improve their children’s social imitation skills. Parents can use the program to watch instructional tutorials, plan for and track their use of the strategies and watch lots of video examples of the intervention techniques.
Using Skype, parents also have coaching sessions with a trainer so that they can receive feedback and support. These sessions help parents become confident that they can continue using the strategies even after the research study has ended. For this study, we have looked for families who are not otherwise able participate in research studies because they don’t live close to research centers, or have limited financial resources or time to participate.
To be honest, I was nervous about how the loss of in-person meetings would influence parent learning and their commitment to the program. I think that one of the best parts of any parent training program is the face-to-face contact that occurs when the trainer, parent and child get together. I was worried that it would also hamper the relationship between the family and the trainer. I was relieved to find, however, that the families all opened their homes (or the parts of their homes visible through the webcam) to me. They allowed me to observe and interact with them and made me feel like a welcomed and appreciated part of their child’s intervention team. Each family that started the online program took time to practice and finish each aspect of the training.
It’s still too early in the study to know how this will translate into parent learning and improvements in child skills. Yet, early feedback from our families suggests that this internet-based program may be an effective way to offer parent training to those who lack access to in-person interventions.
Receiving the Weatherstone Fellowship has allowed me to focus my efforts on this research project and to take advantage of many professional development opportunities. I have been able to present my research findings at international conferences, attend autism workshops and seminars and interact with leading autism researchers and clinicians.
Thank you to the Stavros Niarchos Foundation and the Alfred P. Sloan Foundation, which both support Autism Speaks Weatherstone program. This fellowship has made it possible for me to get the kind of training and experiences I will need for a career in autism research. Thank you to the fantastic families who participate in our research, and thanks to my high school buddy Mike and to those individuals and families affected by autism who inspire us to do this work.