Children with autism spectrum disorder (ASD) are becoming a larger proportion of Seattle Children’s patients, challenging providers to develop new tactics to meet their unique needs.
This year’s Pediatric Bioethics Conference, “Autism Re-examined: Ethical Challenges in Care, Support, Research and Inclusion,” will focus on the challenges and special requirements of treating these patients.
Dr. Eileen Klein, attending physician and co-director of Emergency Medicine Research at Seattle Children’s Hospital, is a featured speaker at this year’s conference. She gave On the Pulse a sneak preview of her presentation plans, what she’s most looking forward to and what she hopes to learn.
What are you planning to speak about at this year’s conference?
My presentation is called, “Navigating Complexity in a Challenging Environment: ASD in the Emergency Department.” A large number of children who have autism come through our Emergency Department. It’s very difficult for those families because they have to wait to be seen. Waiting is hard for all children, but it can be even more difficult for a child with autism.
I joined Dr. Charlotte Lewis, family therapist Lynn Vigo and Louise Novak from the University of Washington Child Health Institute in conducting focus groups with families that have children with autism. Our goal was to find out what they’re looking for when they take their children for dental visits or to the Emergency Department.
I’m planning to talk about what those families say their needs are, the challenges we face as providers and how we can try to address those challenges. I don’t think I’m going to have all of the answers because these challenges are complex and come up time and time again in the Emergency Department.
Like every child who comes through the Emergency Department, children with autism have all degrees of illness. But how do we prioritize seeing a child who has a lower level of acuity but needs to be seen sooner, while still taking care of the children who are sicker? That’s our challenge — and it’s a big one.
Is this a new issue or has it become more noticeable because of increased ASD awareness?
I don’t know whether it’s because of increased awareness or the rising prevalence of autism, but there’s definitely more recognition that this is something we need to address. Currently, there is some literature focused on managing children with ASD who present to the Emergency Department, but there are no established protocols.
At the conference I plan to focus on the important role families have in helping us identify what works for their children. When children come into the Emergency Department, we ask some very specific questions, but we don’t ask questions like, “What’s going to make this visit more positive, safer and better for your child?” I think we need to ask parents those questions so we can do a better job with these kids.
Have we implemented any changes at Seattle Children’s to address these patients’ needs?
Our Emergency Department has already implemented procedures regarding how to best manage all patients and families, not just those dealing with autism. By focusing on helping patients get seen more quickly in general, children with autism and their families benefit as well. Nevertheless, specific interventions targeted toward children with autism need to be considered.
What are you most looking forward to at the conference?
I think it’s going to be an impactful conference because autism is a very powerful and important topic.
I’m looking forward to the mix of people from all aspects of care. There will also be young adults with autism talking about their experiences. I’m really looking forward to hearing what others have to say and I am hoping to learn new things that I can bring back to my job.
Why do you think this conference is important?
I’m not a bioethicist, but I think ethical issues are really important. I believe participating in the bioethics conference brings humanity and perspective back to the job and broadens you as a caregiver.
This conference is attended by people from across the country. I don’t think everyone realizes what a gift it is to have something like this in our own backyard. I would encourage anyone considering attending to join us.
The 12th Annual Pediatric Bioethics Conference is July 22-23 at the Bell Harbor International Conference Center in Seattle. For additional information or to register, visit the conference website.