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 by experienced 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. A brief 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.