Raising a child with autism is challenging, to be sure, but some situations can be more challenging than others. Take trips to the doctor, for instance – especially if the child has to get shots or have blood drawn. “Anything with a needle can be a real stumbling block for families,” says Ellen Hanson, a researcher in Children’s divisions of developmental medicine and genetics. “It’s completely out of the routine, and children may have had a bad experience in the past or general anxiety about going to the doctor that make it really difficult.
“At the same time,” she continued, “these things are part of good medical care.” Blood draws are also essential for the genetic studies that researchers like Hanson are conducting into the root causes of autism spectrum disorders (ASDs). “Some of the families that we’ve reached out to for our studies have been reluctant because of concerns about how their child will react to the blood draw.”
So how can we make this easier on everyone: doctors, researchers, families, and, most importantly, the children? Recognizing that there was little guidance in the literature about making blood draws easier for children with ASDs, Hanson and her colleagues sat down to create what they call a blood draw intervention program – essentially, a method and kit for helping parents and doctors prepare children for blood draws so that the actual event is as painless as possible.
The program relies on the social story, a concept developed and refined by special education specialist Carol Gray, of the Gray Center for Social Learning and Understanding. It’s a form of communication that helps a child with autism develop the social skills to work within a new situation – such as having blood drawn at a doctor’s office – by building on the skills and knowledge that they have already.
Starting from that framework, Hanson and her colleagues, working with Gray, developed a prototype kit consisting of instructions, a social story written in the first person about the steps of having blood drawn (from driving to the doctor’s office to driving home again) and a packet of practice materials (e.g., tourniquet, syringe, rubber glove, band-aids – no needle). The kit also included instructions for the parents and child about how to use it.
To test the program, the team ran a quasi-randomized trial of children already taking part in one of Hanson’s genetic studies. “We sent a group of parents the kit and asked them to use the kit to practice with their child for a few minutes a few times a day for two weeks before the blood draw appointment, so that the child would get progressive more familiar with the procedure,” Hanson explains. “We even asked them to use the kit to practice mock blood draws on themselves, their child’s siblings, or stuffed animals before practicing on their child, so that they could see that it was okay.”
Looking back at their data, the program’s success was quite apparent. “On average, we can successfully draw blood for our genetic studies about 86 percent of the time,” says Hanson. “With the program, our success rate went up to 96 percent.”
Families embraced the program, too. “We got a lot of positive feedback from the parents,” Hanson notes. “They really appreciated the fact that we were offering this as a service, and said that it wasn’t very challenging to work this into their daily routines.” Parents also said that they appreciated the program’s flexibility, as it let them work the program into their child’s schedule and fit it to their learning style.
The program’s success was such that Hanson and her colleagues worked with the hospital’s Technology Innovation and Development Office (TIDO) and Bee Visual LLC, a company specializing in educational products for children with developmental delays, to develop a commercial kit suitable for parents to use at home.
Hanson thinks the lessons learned from developing the kit could be useful for any child who experiences anxiety around going to the doctor and getting shots or blood draws. She is also conducting a second study on a similar approach aimed at helping families prepare children with autism for magnetic resonance imaging scans. “We think this kind of paradigm could be useful for nearly any procedure that a child might have done,” Hanson says. “On the whole, it’s nice to be able to do something that’s so directly helpful to families.”