Supporting children on the autism spectrum within the emergency department
Guest post written by Alexis Plumb
The emergency department is one of the most overstimulating, loud, fast paced, and unfamiliar environments for all children and the caregivers enduring it alongside them. These long, unexpected trips to the emergency department can be difficult for all children, but pose an additional challenge to children on the autism spectrum. All sense of routine, familiarity, and comfort is lost and for many caregivers supporting their children in the emergency department can lead to high levels of stress as navigating these experiences are unfamiliar for them as well. The following offers tips to caregivers who are faced with making an unexpected visit to an emergency department with a child that is on the autism spectrum or has unique needs.
Share Your Child’s Individualized Needs
If your child is on the autism spectrum, it is essential for you to share their individualized needs with hospital staff. Unfortunately, it is too often that caregivers will not vocalize the specialized needs of their child which creates an obstacle for staff in providing the individualized care each child deserves. Emergency department medical teams want to understand the needs of each child and family so they can provide the care needed to allow for a positive experience for all involved (including themselves!). It is understandable to feel overwhelmed by the support your child needs and the information you need to provide to the medical team. Sharing this information upon check in will allow for all staff to be aware and for proper supports to be provided throughout the entire visit. To be proactive, try writing a short list of your child’s unique needs now to keep in your wallet or in your smartphone so that you can be prepared and easily share during a visit. For an organizational tip on how to make these important notes easier to find in your notes app, check out this previous Dose of Play post!
Utilize Provided Supports
If your local emergency department provides pediatric specialized care, then there should be supports available to your family. Child life specialists are one support that may be available to you and your child during your visit. Child life specialists strive to support families in the emergency department through providing individualized support and resources to children that promote coping and encourage normalization of the environment. Some fortunate hospitals have specialized programs in place within their emergency departments to meet the sensory needs of these children and can even offer rooms uniquely designed to provide a calming environment. Furthermore, do not hesitate to bring a bag from home of personal items that provide your child with additional comfort.
Special Needs Toys (pictured)
Keep reading for 2 recommended apps.
Know You are Their Greatest Advocate
Smaller community hospitals and hospitals that care for all aged patients may not have supports readily provided. However, your child already has the greatest support they need: YOU! You are your child’s greatest advocate. You know their needs: what provides them with comfort and what causes them to be distressed. This knowledge is an incredible tool that can allow for staff to provide medically necessary interventions in an individualized way. If there has been any prior hospital experiences, share that with the medical staff too! Knowing what has or has not worked in the past for your child eliminates stress for you, your child, and the medical team. Share the soothing supports your child responds best to, what distresses them, and ask the staff to interact in ways that allows your child to be best comforted.
Examples of soothing supports you can request staff engage in for your child’s comfort:
Permission to wait in quieter space vs overstimulating waiting area
Keep lights off in room when not medically necessary
Limit excessive noise or number of staff members in room
Allow child to manipulate materials that will be utilized by staff (ex.- otoscope, tourniquet, etc.)
Allow for transitions through providing appropriate explanations for tests and treatments and giving child time to process
Understand child’s response to sensory stimuli (ex.- agitation from tape on skin, changing into hospital gown, etc.)
If possible, avoid placing IV on your child’s dominant hand/arm they use to play or self-soothe
If medically appropriate, wait until your child is oriented to environment and materials before taking vitals, and if possible, reduce amount of times taken
You know best how your child will respond; never hesitate to advocate on behalf of your child and their ability to cope throughout their visit.
Utilize Preparation and Routine
Many children on the autism spectrum respond well to structure, routine, and the ability to expect what is to come. In unfamiliar environments, such as the emergency department, it is important to maintain these supports if your child responds well to them. Preparing children for upcoming tests, procedures, and other medical interventions can help them to gain some form of mastery over their environment and maintain a bit of normalcy. If your child utilizes social stories, creating one for their experience within the emergency department could be helpful as well. “Visual Schedules Lite” is a free app that allows for personalized social stories to be created with images already installed within the app or with pictures taken on your device.
“Simply Sayin’” is another free app that many Child Life Specialists utilize while preparing children for medical experiences within the hospital. There are developmentally appropriate explanations, images, and sounds available to help prepare children for various medical tests and procedures. If your child benefits from social stories and knowing what to expect, these apps may be helpful for you.
Unexpected visits to the emergency department are stressful, tiring, and overwhelming for all families. These experiences present additional difficulties for children on the autism spectrum. Medical staff can sometimes misunderstand the needs of this population and may forget that each child brings with them their individual needs and strengths. Caregivers, you are the greatest champion of your child’s care. Never believe that your love and support is not enough or that there is not room for your advocacy within an unfamiliar environment. May it be clear to you that it is not innovative materials that your child primarily needs to succeed in an emergency department (although those may be helpful). They need YOU: your voice, your support, your strength.
Alexis Plumb is a Certified Child Life Specialist at Nemours Children’s Hospital in Orlando, Florida. She primarily supports children and families in the emergency department and pediatric intensive care unit (PICU). Alexis loves being able to provide patients and families with the supports they need so they can thrive in an otherwise unfamiliar environment.