By developmental psychologist Michael Siller, co-director of the Hunter College Autism Center, in New York City, and Alycia Halladay, Autism Speaks senior director for environmental and clinical sciences. Dr. Siller co-directs the Autism Speaks Toddler Treatment Network, and Dr. Halladay helps coordinate the network’s activities.
Between 2007 and 2010, Autism Speaks funded seven rigorous studies evaluating the benefits of training parents to deliver autism interventions for children younger than 2 years of age. These studies involved more than 25 researchers at 15 research sites across the United States and Canada.
To further support this groundbreaking research, Autism Speaks created the Autism Speaks Toddler Treatment Network. Ever since, this network has facilitated ongoing communication among its pioneering investigators as they pursue their work across North America and abroad.
Why put interventions to the test?
It’s extremely important to rigorously evaluate any new intervention program for two reasons.
First, we want to know whether it will be practical to use in the real world.
Second, only through testing can we determine what benefits an intervention delivers to children and their families.
A good evaluation study can take years to complete. Ideally it involves multiple teams of investigators. See the study citations below as good examples of such research.
Once a study is completed, all eyes tend to be on whether or not the intervention led to improvements in behavior. This is understandable. After all, we pursue research in order to deliver benefits to individuals and families – while also improving the way interventions are designed and delivered.
Insights that go beyond “did it work?”
However, finding out whether an intervention worked or not represents just one slice of the scientific progress that occurs during such a study. To share these insights, the researchers of the Toddler Treatment Network have collaborated on a new report: “Designing Studies to Evaluate Parent-Mediated Interventions for Toddlers with Autism Spectrum Disorder.”
It highlights some of the lessons that emerged from our research on parent-led early intervention programs. It also outlines practical considerations to include in developing the next generation of studies evaluating parent-mediated interventions.
For example, we learned a lot by seeing what autism services children had received before enrolling in our studies. We discovered that relatively few children younger than 18 months had been enrolled in any intervention program in their communities. This suggests a widespread need for improved early screening and access to early intervention services.
Also, our researchers found that most of the families participating in their studies were being referred by early intervention agencies rather than community physicians or daycare programs. This flags a need for greater outreach and autism awareness among healthcare and early education providers in our communities.
These findings helped inspire the Autism Speaks Early Access to Care (EAC) initiative. In collaboration with investigators in our Toddler Treatment Network, EAC has developed and is sharing a broad range of educational materials for families and professionals.
Going forward, we want to better understand the challenges and nuances of developing early intervention studies that fit well with the programs that already exist in a community. We also want to improve how we ensure that that the interventions we develop in academic settings translate to provide benefits to children and their families in real-life settings.
Documenting the success and challenges of parent training
Arguably the most robust finding from our TTN research is that, in the main, we can teach parents to effectively use a broad range of intervention strategies. For example, we’ve found that parents can effectively teach children important skills such as joint attention through a variety of everyday activities such as bathing, food preparation and household chores.
However, the emerging evidence also suggests three broad limitations:
1. Not all parents become adept at using the strategies introduced to them.
2. Over time, some parents stop using the strategies.
3. Some learn the strategies well, but don’t use them frequently enough to have a significant effect on their children’s development.
In addition, we see differences in the success rates of studies at different research sites. This may reflect differences in their surrounding communities. Participant recruitment, for example, depends on good relationships with community partners such as local doctors, early intervention agencies and the like.
Communities also differ in how autism is identified and how families enter the system to receive services. Such differences influence which families end up participating in our studies.
The cultural, economic and educational background of the participating families likewise shapes the design of our studies. So does the quality of the community early intervention programs available to them outside of a research study.
If you’d like to learn more, here are three more published studies from the Autism Speaks Toddler Treatment Network:
Please stay tuned for more findings.
Explore all the research Autism Speaks is funding using this website’s grant search.
These projects are made possible by the passion and generosity of our families, donors and volunteers.
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