The ATN at IMFAR
Posted by Angie Fedele, senior clinical research and operations manager for Autism Speaks Autism Genetic Research Exchange (AGRE)
The goal of Autism Speaks Autism Treatment Network (ATN) is to provide expert, comprehensive care to children with autism across North America. The Combating Autism Act provides funding for the ATN to serve as the Autism Intervention Research Network on Physical Health (AIR-P). This work includes developing professional treatment guidelines as well as ATN tool kits for families. The ATN is also funded by Autism Speaks.
I’m pleased to report that this year’s International Meeting for Autism Research (IMFAR) featured a wealth of important new findings by ATN/AIR-P clinicians and scientists. These researchers are dedicated to developing and improving interventions for children with ASD today. Here are my highlights of just some of their IMFAR presentations and posters.
Beth Malow, M.D., of Vanderbilt University, and colleagues from other participating ATN sites presented preliminary findings from a parent-based sleep education study. The study included children ages 2 to 10 years, recruited from three ATN sites (University of Colorado Denver, Vanderbilt University and Hospital for Sick Children). All the children had a confirmed diagnosis of ASD as well as “sleep delay onset.” This was defined as a delay of 30 minutes or more between going to bed and falling asleep. During the study’s initial phase, parents received a brochure with sleep tips. There were no improvements with their children’s sleep habits. In the second phase of the study, parents met with a sleep educator. They learned behavioral interventions than can help with sleep problems. For example, they learned techniques related to appropriate timing of sleep and sleep habits and how to develop and implement a sleep routine. They also learned strategies for interacting with their child to decrease bedtime resistance and night waking. Based on early findings, the researchers noted some improvement in the time it took for the children to fall asleep, as well as improved daytime behavior and family function. Parents reported being very pleased with the results, though there was no improvement in night waking or sleep duration.
Maya Lopez, M.D., and her colleagues at the University of Arkansas for Medical Sciences presented results of their study on an ASD training program for daycare workers. In six full day workshops, the teachers learned early signs and symptoms as well as tips for approaching families about developmental concerns. It also provided coaching on how to work with children affected by ASD. Out of 322 attendees, 193 Arkansas daycare workers participated in the research study. The researchers asked the teachers to fill out knowledge and confidence questionnaires before and after the workshop and 6 months later. The researchers saw significant improvements in the teachers’ ability to recognize autism myths, core symptoms and evidence-based interventions. Participants also reported increased confidence in talking with parents about their concerns regarding autism and the difficulties they had implementing interventions and managing behaviors.
Roma Vasa, M.D., and her colleagues at Kennedy Krieger’s ATN site presented a poster on research that looked at how well parents and clinicians across multiple ATN sites agreed on the presence of anxiety in children with ASD. When parents identified a child as suffering from anxiety, clinicians agreed (with a clinical diagnosis of anxiety) just 24 percent of the time. The younger the child’s age, the less likely that parents and clinicians agreed. The same was true with lower adaptive functioning on the part of the child. Also of interest, disagreement rates varied widely between clinical sites. The researchers concluded that guidelines need to be developed for assessing anxiety in children with ASD.
Harriet Austin, Ph.D., and her colleagues at LEND (Leadership Education in Neurodevelopmental Disabilities) at the University of Colorado ATN site developed a training video on ASD diagnosis procedures. It teaches graduate students how to review evaluation results, deliver an ASD diagnosis and discuss recommendations with families. This is referred to as a “feedback session.” The feedback session training video focused on the importance of feedback, preparing for the feedback session, providing the diagnosis and recommendations/next steps. It included an instructor’s manual and quality checklist.
Pamela Mathy, Ph.D, and fellow researchers at Kennedy Krieger and Johns Hopkins University presented a poster on whether ASD symptom severity predicts long-term outcome. They examined the rate at which children develop phrase speech at or after age 4. They also looked at differences between children who do or do not gain language and if the relationship between IQ and language delay are affected by autism symptom severity. The results showed that children with autism and severe language delays continue to develop phrase speech after the age of 4. Higher nonverbal IQ and fewer problematic autism behaviors predicted better language outcomes. The researchers concluded that speech therapists should take into account a child’s nonverbal IQ and the behaviors associated with autism.
I was excited to hear about these new findings and the ongoing research that is taking place. These researchers are indeed dedicated to improving the lives of all who struggle with autism. For a complete list of ATN presentations and posters at IMFAR 2012, click here.