NEW YORK, N.Y. (September 13, 2011) – For children with autism spectrum disorder (ASD), routine medical procedures such as having their blood drawn can be very difficult. Communication and social interaction deficits and reliance on fixed routines experienced by many children with ASD are the significant factors to be considered when preparing a child with ASD for a blood draw. In an effort to help families and medical providers make necessary medical procedures less stressful, Autism Speaks – North America’s largest autism science and advocacy organization – today launched a new toolkit: “Taking the Work Out of Blood Work: Helping Your Child with an Autism Spectrum Disorder –A Parent’s Guide, and the companion:Taking the Work Out of Blood Work: Helping Your Patient with an Autism Spectrum Disorder –A Provider’s Guide. These unique guides, which help create the best possible experience for a child with ASD undergoing blood draws or routine medical procedures, were developed by experts from Autism Speaks Autism Treatment Network (ATN) in conjunction with the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. These efforts are a major part of the ATN’s federally funded work for the Autism Intervention Research Network on Physical Health (AIR-P). The Blood Draw Tool Kit joins the Medication Decision Aid also published by the ATN and AIRP as another free resource to support families to provide the best medical management for their loved ones with ASD.
“The goal of this Blood Draw Tool Kit is to empower families with effective strategies to create a less stressful, and smoother approach to routine medical care in collaboration with their child’s doctor or medical practitioner,” said Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “This Blood Draw Tool Kit is one in a series of tool kits being developed by the Autism Speaks ATN, with major support from cooperative agreement, UA3 MC 11054, from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program, to improve the medical care of children with autism.” It features practical strategies to help parents prepare their child for unfamiliar and possibly uncomfortable medical procedures that are often necessary for all children at some point in the course of routine comprehensive medical care. The companion tool kit provides similar resources to help medical practitioners improve the quality of medical care they provide to any child with ASD in their practice as well.
All parents know that having blood drawn can be an uncomfortable and scary experience for a child. Children with ASD may have additional issues such as limited or absent language, or an inability to rely on social cues that can make the blood draw experience more frightening for the child and difficult for the parent and medical practitioner. When faced with a new situation, individuals with ASD may experience “sensory overload” in which sounds seem louder, lights brighter or smells stronger. “Autism Speaks is committed to providing families with free, helpful resources developed byexperienced people – both professionals and parents – such as this set of practical tools to hopefully make medical care as smooth and positive as possible,” Dr. Lajonchere continued.
This tool kit provides strategies that can be used before and during the medical visit and procedure. Parents are advised when and how to explain the procedure, and there are suggestions for bringing toys or visual supports. Strategies for relaxation and distraction using toys, music and laughter are laid out, and it’s suggested that these be practiced at home during times of the day when your child is already anxious. Visual supports such as “First/Then” boards or “Visual Schedules” need to be prepared in advance. Another tool is a Social Story™ which helps your child to understand the situation and can decrease his/her anxiety about an unknown situation.
ATN Medical Director Daniel Coury, M.D. explained, “A primary goal of the ATN is to create best practices for medical care for a child with ASD and to share these with medical practitioners throughout North America and around the world.”
Medical practitioners are advised that an organized approach to routine clinic procedures is especially important for children with ASD and that planning and team communication are key factors that can improve the experience for a patient with ASD. The tool kit provides a link to a sample triage questionnaire which will assist the practitioners office to gather information about their patient in advance. Guidance is provided regarding appointment scheduling, coordinating with other providers so that all needed tests can be completed with one blood draw rather than multiple sticks, and if the patient will be sedated for a different procedure, considering scheduling the blood draw while the patient is under sedation. Abrief written protocol including a backup plan may help staff and practitioners become more coordinated in their approach to patients with ASD. It is suggested that the protocol outline under what circumstances the procedure should move more quickly or be stopped, when to call for more assistance and by whom, and setting up the room and materials before the patient enters the room. Additional suggestions include use of child-friendly equipment.
Most importantly stresses Dr. Coury, “Communication is key. Discuss all plans with the child’s parent in advance, including what tools or strategies they plan to utilize to prepare their child or to distract or relax them during the appointment so the procedure runs more smoothly. “
Autism Speaks offers the Blood Draw Tool Kits for both parents and providers free of charge and they can be downloaded from the list of all of the ATN toolkits found at: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use. The kit was inspired by the success of the popular Autism Speaks 100 Day Kit for newly-diagnosed families. Autism Speaks would like to thank the U.S. Department of Health and Human Services, Health Resource and Services Administration, Maternal and Child Health Research Program for their generous support to develop this resource. The Blood Draw tool kit was also reviewed by families associated with the Autism Speaks Autism Treatment Network site at Children’s Hospital Los Angeles.
The Medication Decision Aid Tool Kit, which is also free of charge and available from that list http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use, was also funded by cooperative agreement, UA3 MC 11054, through the U.S. Department of Health and Human Services, Health Resource and Services Administration, Maternal and Child Health Research Program, and was reviewed by the Patient Decision Aids Research Group at the Ottawa Health Research Institute.
Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, and one in 70 boys. The prevalence of autism has increased 600 percent in the past two decades. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is North America’s largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light It Up Blue initiative. Also, Autism Speaks’ award-winning “Learn the Signs” campaign with the Ad Council has received over $272 million in donated media. Autism Speaks’ family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government’s response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 27 states thus far, with bills pending in an additional 12 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.
About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He served as Vice Chairman of General Electric; and as the Chief Executive Officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, Mission Product, LLC, EMI Group Global Ltd and the New York Presbyterian Hospital. Suzanne Wright is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.