Collaborating with the community for autism research

The word "autism" spelled out in building blocks, sitting among a group of puzzle pieces.

What do you think of when you hear the word “research”? White lab coats, beakers and test tubes, microscopes? When you Google “research,” these are some of the images that come up, alongside question marks, magnifying glasses and people huddled in deep thought. Such images can make research seem mysterious, intimidating and maybe even a bit scary – sentiments that could make it harder for people to want to participate in research. However, to be successful, clinical research needs people – participants who are willing to collaborate with investigators, share their thoughts and experiences and sometimes try new things.

As an autism researcher, it’s important that my team and I make research as approachable and accessible as possible. That’s why we look for opportunities to meet families in places where they want to be and offer something of immediate value. For example, we have a longstanding partnership with the Houston Museum of Natural Science that allows us to engage families in the national SPARK study on the museum’s sensory-friendly days. During these events, families enjoy free access to the permanent exhibits and discounts on other attractions. Similarly, we’ve invited families to meet us at Chuck-E-Cheese during their sensory-friendly Sundays and provided food and games for all children in the family in exchange for completed saliva kits (i.e., data).

Our next event is particularly exciting, as we’ve partnered with Spectrum Sailing to promote its free sailing camp for autistic youth, which will be offered April 26-28 at the Lakewood Yacht Club in Kemah, Texas. Children will have the opportunity to learn all about sailing and get first-hand experience on the water! At the same time, they will be able to contribute to our understanding of how the sailing camp affects children’s emotional and behavioral well-being.  View a flier for the event.

Through these types of activities, my hope is that families will see that research is not all about white lab coats and test tubes – that they can contribute to science in meaningful ways that don’t always have to be intrusive or intimidating. In fact, it might even be fun! If you are an autism family and would like to learn more about research opportunities, I invite you to join us at our next Houston Museum of Natural Science Sensory Friendly event on April 27. Sign up and view a flier for the event. Visit our lab page and follow us on Facebook to access free resources and more information about events. We all want answers to our questions about autism; by working together with community partners, we can make it easier for families to engage in research to answer those questions.

By Dr. Robin Kochel, associate professor of pediatrics – psychology, Baylor College of Medicine, associate director for research, Autism Center, Texas Children’s Hospital

Leave a Reply

Your email address will not be published. Required fields are marked *