A Q&A with the authors of a new Autism Treatment Network study focused on improving emergency care for children who have autism
As many of our readers know first-hand, the environment of a busy hospital emergency department can overwhelm children – and adults – who have autism-related sensory issues. Adding to the emotional challenge are the unpredictability and long wait times that are typical of an emergency room.
On Feb. 1, the journal Pediatrics published a special supplement on autism authored almost entirely by clinicians in the Autism Speaks Autism Treatment Network (ATN) in its role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P).
Among these reports was an investigation into the emergency-care needs of children and teens who have autism, authored by doctors and therapists at the ATN’s two Canadian sites – the University of Alberta’s Glenrose Children’s Rehabilitation Centre, in Edmonton, and the University of Toronto’s Hospital for Sick Children. (Read their full report here.)
We asked two of the study authors – research coordinators Andrea Greenblatt and Christopher Kilmer, to answer questions about their research and the great need that inspired it.
Andrea is a research coordinator in the department of social work at the Hospital for Sick Children and Christopher participated in the study while a research coordinator in the department of pediatrics, at the University of Alberta. Christopher is now at the University of Calgary, Alberta.
Q: Our community knows firsthand how stressful and frightening an emergency department visit can be for children – and adults – who have autism. Please tell us a little about how you became aware of their great need for a more autism-sensitive experience.
Andrea Greenblatt: Absolutely, a visit to a hospital emergency department can be scary for anyone – but especially for a child who has autism. We know that many people with autism are more sensitive to noises, bright lights and odors. Many are likewise uncomfortable with new environments and unfamiliar people – all pretty standard in an emergency department.
Through our team’s previous research, as well as our experience working directly with children who have autism, we became acutely aware of the need for more attention to be paid to their experiences in the emergency department.
In this study, we interviewed children with autism, their parents and their doctors and nurses to find out more about their experiences. We did this at two sites: the Stollery Children’s Hospital, in Edmonton, and the Hospital for Sick Children, in Toronto.
If during the course of a child’s emergency department visit, a parent or other guardian indicated that their child had autism, we asked if they might like to participate in our study. I or another research coordinator then contacted the interested families and, if they gave their consent, interviewed them about their experiences. If the child was able and willing to participate, we interviewed the child as well. We also interviewed a nurse or doctor who had been involved in the child’s emergency care.
Through these interviews, we learned that parents greatly appreciated the care they received during their hospital visits. But they also reported many challenges. They spoke about difficulties with communication. For instance, many reported feeling like members of the emergency department staff weren’t quite understanding them – especially when they tried to help those providers work more effectively with their children.
Similarly, many of the children in the study said that communication was challenging for them. They described not being able to understand what was going on and being frustrated when staff didn’t answer their questions.
Many parents also described how waiting in the emergency department created great stress for their children. And some expressed the wish that there could be a separate room where they could retreat with a child who was getting overwhelmed by the bustle of the emergency department.
Some parents described concerns about being judged by staff members and other families in the waiting room. That is, by people who didn’t understand their child’s autism-related behavioral challenges.
When we interviewed doctors and nurses, they readily agreed that the emergency department is far from an ideal environment for a child with autism. They also agreed that including parents in a care plan, using appropriate communication strategies and creating a calming environment would all help ease a child’s emergency department visit. And some described trying to accommodate the special needs of a child with autism. But many said they were limited by lack of time, staff availability and other patient concerns.
Q: In the second phase of your study, you moved from one-on-one interviews to focus groups. What did you learn from them?
AG: For the focus groups, we invited the parents we interviewed during the study’s first phase to join additional parents invited from our surrounding communities as well as hospital staff with experience working with children affected by autism.
Some of the most important discussions were about how emergency department staff might use a screening tool, or parent questionnaire, to learn about a child’s needs. This would guide the staff on how to work with parents to find the best ways to calm their child – for example, with a quiet room and/or appropriate toys or books for distraction. We also discussed using hospital child life specialists to create more child-friendly environments and to work with emergency department staff on the skills they need to work with children who have autism and other developmental disabilities.
Q: Were there any surprises?
AG: One surprising theme was that parents hesitated to disclose their child’s autism diagnosis in the emergency department. Because of how we identified potential participants, all the parents in our study had told a staff member that their child had autism. Even so, many told us about going through a stressful process of weighing the risks versus benefits of doing so.
On the one hand, parents reasoned that letting healthcare providers know that their child had autism might speed service and prepare the staff for their child’s special needs, while avoiding their child being judged as badly behaved, or “spoiled.”
However, parents also worried about doctors and nurses making negative assumptions about their child’s autism. In particular, they worried that the staff might pay less attention to the actual reason they’d brought their child to the emergency department.
Other parents described the extremely difficult situation of being asked about an autism diagnosis in front of a child who had not yet been told about it. They were understandably reluctant to have these discussions in front of their child.
This reluctance is understandable but was of great concern to hospital staff who told us that knowing a child’s autism diagnosis is vital information for guiding care.
Christopher Kilmer: I don’t know if I would call it a surprise, but I want to note the resilience of the children and parents who took part in this study. These families exhibited great strength in developing strategies to work through the challenging emergency department situations that are often exacerbated by autism.
Q: What feedback did you get from hospital staff?
CK: During the focus groups, we presented some of our ideas on how to improve emergency department services to meet the needs we learned about from children and their parents. Based on their experience and knowledge of the emergency department system, the hospital staff provided guidance on the feasibility of implementing various ideas.
We were particularly encouraged by how many emergency department nurses and doctors bought in to the importance of our study. They were invested in improving care for these children and their families. We met many champions within the system – people who want to collaborate with us to make helpful changes.
Q: What was the most important thing you learned from the study?
CK: One of the key findings was that the most effective emergency department care depends on collaboration. This includes active consultation with parents as the experts on their child and also intentionally engaging children who have autism in their care, as opposed to making assumptions on their abilities and needs.
Q: Did your research produce autism-specific guidelines for emergency department staff?
CK: Both parents and emergency department staff agreed on the need for better communication in several areas. Our team incorporated their feedback into a questionnaire that can be used during the emergency department admission process. We designed it specifically for the care of children who have autism, but it’s broad enough to be used during all pediatric admissions.
The goal of this form is to quickly and succinctly identify a child’s needs as well as potential triggers, along with strategies that can help the child cope. These include their preferred methods of communication and support.
Once filled out, this form can become part of the child’s chart so it’s seen by all the hospital staff who work with child. We developed this checklist with the guidance and feedback of the parents and hospital staff who participated in our study.
Q: What would you like to see next?
CK: We are currently testing the practicality and helpfulness of the admission questionnaire we developed in a number of clinical areas in the hospital, and we plan to pilot the questionnaire in the emergency department as well. We hope that it will translate our research findings in a way that will have immediate benefit to the children and families receiving care throughout the hospital.
Another important area that needs research is the medical experiences and needs of teens and young adults with autism as they age out of the pediatric system of care. Our current study did not focus on this population, though many parents raised it as a great concern and something they hoped would be explored in the near future.
Q: How did the Autism Speaks ATN/AIR-P help make this research possible?
CK: Autism Speaks and ATN/AIR-P were key to enabling this research to take place, through financial support at two sites. In addition, ATN/AIR-P leadership collaborated with us in reviewing our research as it unfolded, providing important feedback and direction. We are grateful for their support and that of Autism Speaks’ community of volunteers and donors.
* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.
Also see “Helping patients with autism navigate the stressful ER,” a CNN report on the Help Me Keep Calm Program for training emergency room staff on how to communicate with patients who have autism. Autism Speaks’ helped fund the program with a Family Services community grant.