Last month, we submitted testimony to inform the Consensus Statement on Best Practices for SAFE Care. SAFE, or Supporting Access for Everyone, is an interprofessional and stakeholder-driven initiative to establish best practices for supporting youth with neurodevelopmental disabilities in medical settings. Letter C’s founder shared her lived experience as a mother of a young child with autism.

SAFE Public Testimony, October 2022

How can medical settings better support youth with neurodevelopmental disabilities?

My name is Desiré Greene, and I am the mother of an incredibly energetic 5-year-old boy with autism. When he first started displaying behaviors commonly associated with autism, public outings became just a bit more nerve-wracking. He’s big for his age (off the growth charts), so there’s constant worry about what would happen if he suddenly became uncooperative. Of course, you can’t expect every place of business to understand and accommodate children with neurodevelopmental disabilities, but I am surprised by how little is done by his pediatrician’s office. Our experiences during those visits bring the following recommendations to mind.

First, know the child has a neurodevelopmental disability. It seems I must remind every staff member, nurse, and doctor about his autism diagnosis with each visit. Labeling his record within a customer relationship management system, or even on his paper file, would prepare staff ahead of our appointment and make things go more smoothly.undefined

On a related note, shorten wait times for children with neurodevelopmental disabilities. Keeping neurotypical kids calm or occupied while waiting is a feat. This challenge is often magnified for a child with autism, especially in a strange and sometimes scary place like the doctor’s office. During our last visit, we had to wait before being escorted to the exam room, wait for the nurse, wait for the pediatrician, wait again for the nurse, and then wait for potential adverse reactions to a vaccine. In short, we spent more time waiting than receiving care.undefined

Medical professionals should consider how waiting can create stress and anxiety for these children and attempt to streamline appointments. This includes underbooking certain timeslots, so staff aren’t spread across multiple patients or, perhaps, prioritizing these children when they arrive to get them out of the door more quickly.

Finally, when you can’t avoid the wait, make it as pleasant as possible. We often bring snacks or toys in an attempt to keep our son occupied. But he’s often incredibly curious and wants to interact with his surroundings, prefers movement and can’t sit still, or generally becomes impatient and heads for the door. A designated, childproof room with sensory toys or other features would be immensely helpful during visits. Even a “sensory toy kit” would help keep our son calm while waiting.undefined

This recommendation also applies to the emergency room, where waiting is the norm. Two years ago, I spent several hours in the ER with my son. Although we were in the pediatric unit, the hospital offered nothing to make his wait time more tolerable. And since we arrived via ambulance, I was unable to pack his usual bag of goodies. I had nothing but my words, touch, and the scarf I had worn that morning to keep him calm during a 10-hour ordeal (I also found the limited drinking options of a baby bottle or open cup particularly ableist).

These are simple and obvious fixes, but if more medical settings employed them, youth with neurodevelopmental disabilities would have a less stressful experience.

Thank you.