Guest post by psychologist Micah Mazurek, PhD, of the University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders. The center is a member of Autism Speaks Autism Treatment Network (AS-ATN). The research Dr. Mazurek describes was made possible through the AS-ATN’s role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P).
As a child psychologist at the Thompson Center, my research and clinical work focus on helping children and families affected by autism. A few years ago, Center Director Stephen Kanne and I were developing and testing a new treatment for children with autism. But we had difficulty finding measures to track short-term improvements in the children’s symptoms.
In research, we need such measures to demonstrate the effectiveness of new treatments and approaches. In clinical practice, such measures can provide critical information for families, therapists and doctors as we discuss and update our treatment strategies and goals.
As it turns out, we weren’t the first to recognize the lack of good measures for tracking treatment-related improvements over the short term. As we searched the literature and met with colleagues, we discovered that this was a major problem for both researchers and clinicians.
Developing a new tool
To meet this need, we developed a questionnaire we called the Autism Impact Measure (AIM). We designed it to pick up short-term improvement across the range of autism symptoms. We wanted to be able to measure even small improvements in a child’s social interactions, communication and repetitive behaviors.
To make sure we’re capturing the most useful information, AIM assesses both the frequency of symptoms and their effect on daily life over a two-week period. It includes 41 questions for parents. For example, it asks parents to report how often their child “resisted changes in routines” on a scale of 1 to 5. It asks how much this symptom interfered with their child’s daily function, also on a scale of 1 to 5.
First we tested the AIM here at the Thompson Center with 102 children with autism and their parents. The parents found the questionnaire quick and easy to complete. Both parents and clinicians found it useful.
Encouraged, we knew we had to complete more research to ensure that we had a valid and reliable assessment tool. We needed to test it in a much larger sample of children and families, alongside other measures of autism symptoms.
AIR-P funding makes large study possible
This larger study became a reality through our center’s membership in the Autism Speaks Autism Treatment Network (AS-ATN). This allowed us to collaborate with other autism experts and centers across North America. Through the AS-ATN, we also received funding from the Autism Intervention Research Network on Physical Health (AIR-P) to test the questionnaire with 440 children and their families at eight AS-ATN centers.
The results of this initial project are very promising. We have found that our questionnaire is easy to use and efficient. Its results are reliable and consistent across many different users. And it’s measuring what we intended it to measure – real benefits across short periods of time.
Now we’re working with autism experts across the country to test whether the AIM accurately assesses improvements across different types of therapies and other treatments. We look forward to reporting the results.
In closing, I want to express our gratitude for the support of the Autism Speaks community and all the families who have participated in this research. Ultimately, we hope that this work will improve care and quality of life for children with autism across North America and beyond.
You can explore all the research Autism Speaks is funding using this website’s grant search. Subscribe to Autism Speaks Science Digest for more autism research news, blogs and more, delivered biweekly to your inbox.