Stacey Auger is a Seattle-area grandmother who serves as primary caregiver to her toddler grandson, Ayden, who was diagnosed with ASD at 15 months. Thanks to research funding provided through the Combating Autism Act of 2006, Stacey and Ayden took part in a University of Washington (UW) clinical trial to test the effectiveness of a promising new early intensive behavioral intervention program called the Early Start Denver Model (ESDM), for toddlers as young as 12 months of age.
Ayden was among 40 Seattle-area children who participated in the clinical trial to determine if ESDM intervention, when initiated below age two and provided at high intensity for two years, can significantly improve IQ, adaptive behavior, and autism symptoms. ESDM is provided in the toddler’s home by both trained therapists and parents or the child’s primary caregiver.
The research community will learn the results of the clinical trial in two years, when all the families participating at three sites nationally have completed the study. But for Ms. Auger, the verdict already is in. She shared her experiences with Autism Speaks.
It was nothing short of winning the lottery when we were randomized into the home-based intervention. Ayden was a regressive child, he was diagnosed with ASD at 15 months. We received three months of parent training at the UW Autism Center, which was incredibly helpful to us. Although I was the primary caregiver in the study, I’m just one part of a seven-member family.
The parent training was very eye opening for me because it was in opposition to the way I raised my own children, so I had to learn all over again how to effectively communicate. Old school wasn’t very effective with Ayden. Working with me and Ayden one on one, the UW team taught me how to engage him — seeking the smile first and level of interest prior to engagement. We worked towards joint engagement and pointing, the sort of things we take for granted with a typically developing child.
It was two hours a week—we did that for three months, and then we started the home interventions, 20 hours per week. Within a very short time, by the second week, we were getting joint attention. We noticed an immediate difference in the way we communicated with him and continued to use the methods we had been taught. That was of primary importance. Some parents receive training but don’t use it — we knew right away that each and every communication was vital and to employ the methods that we were taught. It was important that everyone who communicated with him use the same protocol.
So did the intervention succeed?
I can sum it up in one brief statement — Ayden lost his qualification for an IEP in November (2010.) So he went from special education eligibility to being a typically developing peer in his pre-school. We still have a long way to go, this doesn’t mean he is typically developing in social skills. But there is no possible way that he could be where he is now without intensive early intervention. He just completed his first season of soccer, trophy and all.
We knew how fortunate we were to have the UW working with us. There are so many families without early intervention support. I strongly believe that every single child can make progress with intensive early intervention. We lived and breathed the ESDM model for 27 months during the study, and we continue to do so today; because it works.
This study was funded by the Combating Autism Act and is part of a series of randomized clinical trials (RCTs) underway at UW, UC Davis and the University of Michigan. Dr. Sally Rogers (UC Davis) is the director of the multi-site study; Dr. Annette Estes is leading the efforts at the UW site. The foundation for this work was an RCT that was conducted at UW through a CAA-funded grant awarded to Geraldine Dawson, when she was professor of psychology at UW. Dr. Dawson now serves as chief science officer for Autism Speaks and is a research professor of psychiatry at the University of North Carolina.