Getting blood work done can be anxiety inducing at the best of times, but for children with Autism Spectrum Disorder (ASD) this simple medical procedure can be extremely challenging.
That’s why Saskatchewan Health Authority’s Laboratory Services and members of the Autism Program in Regina are working together to make the experience a little less daunting for children with autism.
Together, the teams have created an illustrated booklet for kids that outlines the exact process for getting bloodwork.
(from left to right) Allison Ekdahl-Johnston, Angela McTaggart and Brandi Kohl with their book My Lab Story.
“Many children are anxious about situations that are unknown and people with autism often only see small pieces of the big picture,” explains Allison Ekdahl-Johnston, Mental Health Therapist with the Autism Program in Regina. “One strategy to help prepare them for the unknown is to show pictures of what to expect and for them to know that at the end, there’s a reward.”
The idea for the booklet came out of a presentation based on research conducted by Dr. Saheba Bajwa during the summer of 2017. “Dr. Bajwa did a presentation to the staff in the Laboratory Services on her research regarding blood draws with the young ASD population in Regina and area,” says Angela McTaggart, Manager Procurement Services. “A big part of that presentation was about the frustrations ASD children and their families have with the current system.”
The presentation inspired McTaggart and her staff to make some changes to create a more positive experience for ASD kids, beginning with how children with autism access the lab.
Normally, the outpatient clinic at the lab is first- come, first- serve but that kind of process can be difficult for children with autism.
“One of the first things we did was to start making appointments for these children to minimize their wait times, says McTaggart. “It also allowed us to get some information about them prior to them coming in. For example, it’s helpful for us to know if a patient is verbal or non-verbal or if they have any issues with being touched. We even had one patient who preferred to be called a name that wasn’t their given name. Knowing these things in advance can help us create an easier experience for kids with autism.”
To further increase that sense of comfort and security, the team looked at making changes to the child collection room. “We then had Allison and Brandi Kohl (a Clinical Social Worker) from the Autism Centre tour our child collection room and make suggestions on [how] to make the space more comfortable.”
The collection room is painted in neutral colours but still has friendly animal characters on the wall.
However, the biggest change was creating the booklet. At the Autism Centre, one of the tools they use with children is social stories. According to the Autism Canada website, social stories are “simple descriptions of an everyday social situation, written from a child’s perspective. Social stories can help a child prepare for upcoming changes in routine, de-mystify social interactions, and relate academic skills to real-life experiences. The idea is that, with the help of an adult, the child rehearses the story ahead of time. When the situation actually happens, the child can then use the story to help guide his or her behaviour.”
The idea of a social story inspired the team to create one to prepare kids with autism for blood work. The story and illustrations walk the child step-by-step through the process.
“These stories are told in a ‘First Then’ manner,” says Ekdahl-Johnston. “You have to explain everything the child will see or experience. So for example in our story, the first thing the child will see is the hospital, so the first page of the booklet shows them the main entrance to the hospital. And then what they will see when they get past the main doors and so on.”
So far, the feedback on the booklet has been really positive. “We had a mom that was very nervous about bringing her child in so I emailed her a copy of the book,” says McTaggart. “She thought it was perfect. They read the book together for a few nights before their appointment so her child would be prepared.”
Now McTaggart and her team email the book to parents when they are making appointments. The Autism Centre has also emailed the booklet to staff at Child and Youth Services and is in the process of checking with local pediatricians to see if they would like copies for their offices.
For McTaggart and her staff, becoming book authors has been inspiring but it’s all about creating a better experience for their patients.
“Just a few small changes and some effort can go a long way to making someone’s experience with us as positive as it can be,” she says.