Autism Speaks ATN/AIR-P physicians and researchers publish second special supplement in Pediatrics
By Audrey Wolfe, of Boston’s MassGeneral Hospital for Children. Wolfe is the clinical research coordinator for the Autism Speaks Autism Treatment Network’s federally funded work as the Autism Intervention Research Network for Physical Health.
This week, the journal Pediatrics published a special supplement on the health and medical treatment of children and teens with autism or other developmental disorders. This is the second Pediatrics autism supplement produced by the Autism Speaks Autism Treatment Network (ATN) serving as the federally funded Autism Intervention Research Network on Physical Health (AIR-P).* Pediatrics is the official scientific journal of the American Academy of Pediatrics (AAP).
Read the related news story here.
Like Pediatrics first ATN/AIR-P supplement – published in 2012 – the new special issue is filled with research findings and treatment guidelines.
As our families know, many people affected by autism have associated medical conditions. These include gastrointestinal disorders, sleep problems, seizures, nutritional deficiencies and anxiety to name just a few. In addition to compromising a child’s health, these issues can affect behavior, development and learning.
ATN clinicians have long pioneered research aimed at developing effective interventions for these conditions.
This week’s special supplement to Pediatrics is filled with their research reports as well as treatment guidelines for pediatricians and other physicians.
Pediatrician James Perrin, former director of the ATN/AIR-P Clinical Coordinating Center, served as editor alongside guest editors Lonnie Zwaigenbaum, principal investigator of our ATN site at in Edmonton; and Marji Erickson Warfield, a collaborator on the AIR-P/ATN’s transition research project.
In the prologue to the special issue, the editors write that “this body of work reflects the multi-faceted nature of autism and the importance of addressing the range of physical and emotional health challenges associated with the disorder.”
Below I highlight some of the research findings that may be of particular interest to families – including studies that used information from the ATN Registry. The registry is made possible by the voluntary participation of families seen at our ATN centers.
Sleep difficulties and medication use in children with autism. Sleep difficulty is common among children with autism and a prominent concern of their parents. Addressing sleep difficulty is especially important given that it can have a wide-range of effects on a child’s behavior, health and well-being. In this report, ATN researchers, led by the ATN site at Vanderbilt University Medical Center, analyzed ATN Registry information on more than a thousand children to better understand the situation.
They found sleep difficulties clearly documented by parent-completed questionnaires and clinician reports. The researchers also wished to learn more about how these sleep difficulties were treated – in particular how commonly physicians used sleep medications (versus behavioral approaches). They found that doctors were often using sleep medications to treat sleep concerns – with evidence, in many cases, of unwanted side effects. They call for further research and greater awareness of behavioral approaches to disturbed sleep.
For more on these behavioral approaches to improving sleep, see the ATN/AIR-P sleep tool kits for children and teens. Both can be downloaded free of charge here.
Improving access to care at autism treatment centers. From previous research, we knew that many families have great difficulty getting their children seen by autism specialists. ATN researchers from our two Ohio ATN sites – Cincinnati Children’s Hospital Medical Center and Nationwide Children’s Hospital in Columbus – investigated why these access issues occur and how to better serve families facing long waits for services. They identified the main sources of delays at their centers and made targeted changes – with both sites achieving marked improvements by the end of the study.
The use of autism-specific care plans during hospital admission. “Hospital admissions for patients with autism are increasing, yet little is known about these patients’ experience with care in the hospital setting,” write the authors of this study. Many children with autism experience great anxiety or otherwise have difficulty within a hospital setting. So our researchers developed an autism-specific hospital care plan. They then tested their plan in hospitals. They found that it resulted in a better hospital experience for pediatric patients with autism and their families. Hospital staff gave the plan a thumbs up as well. The researchers conclude that such autism-tailored hospital care plans are practical to use and can improve hospital care for children with autism.
Want to learn more? Readers can access summaries of all the articles in the new Pediatrics autism supplement here.
* The work of the ATN/AIR-P is carried out at the Autism Treatment Network’s 14 autism specialty clinics across the United States and Canada under the guidance of the Network Clinical Coordinating Center at Massachusetts General Hospital for Children, in Boston. The ATN’s role as the AIR-P is funded by the Health Resources and Services Administration of the U.S. Department of Health and Human Service.