Aims of the Toolkit:
1. To describe what families may encounter during an emergency department visit.
2. To provide families with strategies for managing the visit.
3. To give tips for health care providers who work with a child with autism in the emergency department.
What you Need to Know?
An emergency department visit can be challenging, but research has identified ways to support care.
Meet Kelsey and Her Dad, Douglas
Kelsey, an 8-year-old child with limited verbal abilities, fell down a set of stairs at her home. Her father, Douglas, is concerned that she may have seriously injured her leg and immediately drives her to the local emergency department. Kelsey is unable to communicate verbally about her pain, but she continues to point at her knee.
Douglas notices that the emergency department waiting room is very busy and quite loud. He registers his daughter in the emergency department, and is not asked about nor discloses any unique needs or challenges that Kelsey might face. Kelsey seems to get upset when a baby starts crying in the waiting room, and begins to yell. Douglas pulls his phone out of his pocket and gives it to Kelsey to watch a video. Kelsey then starts to calm down. A nurse notices this and comes over to the pair, engaging both Douglas and Kelsey. Kelsey does not look at the nurse and does not stop watching the video. The nurse knows there is an available quiet room, and offers this to Douglas, who gladly accepts. After bringing Douglas and Kelsey to the room, the nurse returns to her duties.
Potential Challenges during an Emergency Department Visit for a Child with Autism
Emergency department (ED) environments can pose challenges and stress for individuals with autism and their families. Parents in a research study1 described a process of families weighing whether a trip to the ED was really necessary due to anticipated struggles with a visit. Specifically, they questioned if the health concern was severe enough to warrant the multiple challenges resulting from the ED experience.
Here are some of the potential issues with ED visits that parents identified:
- Environmental concerns, such as lights, noise, and commotion
- Unfamiliar location and people
- Constant changes and transitions
- Long wait times
- Parents may be unable to leave the child for periods of time to take a break, get food, etc.
- Given the potentially urgent needs of other service users, the care schedule can be uncertain but waits are often lengthy.
- Feeling rushed when care is being provided
- Lack of time for the child to acclimate to various situations, such as needing a procedure
- Potential for the child to struggle with understanding what is happening
- Difficulty communicating their own concerns, such as identifying pain
- Not understanding what is being communicated to them by health services providers, including information about unpleasant procedures
- Communication difficulties may result in anxiety or behavioural outbursts
- Behavioural challenges may be misinterpreted and not understood as challenges in care and the ED environment
- Sensory concerns related to needed procedures
- Gaps in follow-up care
- A lack of health care provider knowledge about autism
- Parents not being included in or consulted about the child’s care
- Child’s memories of past negative experiences
- Lack of items to distract the child or occupy the child.
What Parents View as Helpful
- Medical procedures done in one sitting rather than multiple visits
- Age-appropriate distraction items, like movies or games
- Caregivers remaining calm in the ED in soothing the child or not heightening the child’s anxiety
- Offering positive reinforcements for successful completion of procedures and/or the visit
- Advocating for their child, and articulating their needs
- Helping with communication between the child and health care providers.
After some time, a resident comes into the room. He starts talking to Douglas, and asks Kelsey what is wrong. He is puzzled when Kelsey does not respond to him or look at him. Douglas tells the resident that Kelsey is autistic and is largely non-verbal, noting that she does understand what is said to her but usually doesn’t respond. The resident says that he doesn’t know much about autism and hesitates to perform an examination of Kelsey’s leg. He says that he needs to leave to consult with a team member. Kelsey continues watching the video on Douglas’ phone.
The resident eventually returns to the room with another physician. The new physician, Dr. Clair, introduces herself to both Douglas and Kelsey, again eliciting no response from Kelsey. Dr. Clair asks Douglas to describe what had happened. Dr. Clair tells both Douglas and Kelsey what the examination she needs to perform will entail. She asks Douglas if he thinks this will be okay, and Douglas agrees to it. Dr. Clair asks Douglas if he has any suggestions for how best to approach the procedure, and Douglas believes Kelsey will be fine getting the examination as described by Dr. Clair, as long as he calmly explains what’s happening and Kelsey has time to absorb the information.
Dr. Clair explains the examination every step of the way to both Kelsey and Douglas. Douglas repeats key pieces of information to ensure Kelsey understands and is comfortable. It is determined that Kelsey’s knee requires ice, rest, and over-the-counter pain medication at Douglas’ discretion.
Disclosure of the Autism Diagnosis
Some parents in a research study2 debated whether or not to disclose to health care providers that their child has autism.
Benefits of disclosure were:
- Assisting health care providers to better understand the child and their behaviours
- Getting accommodations in the child’s care
- Informing and guiding health care providers to provide the best possible care for the child.
Reasons why parents didn’t want to disclose were:
- Concerns that their child would be negatively labeled
- Not wanting to disclose autism in front of the child.
Health care providers in the study acknowledged that parents may struggle with disclosing their child’s autism diagnosis and service needs, but reinforced that it is important for them to know about this diagnosis and the needs of the child in order to provide the best possible care.2 The University of Alberta has created a useful form, called ‘This is my Child’, that parents can fill out to share the most important and relevant information with healthcare professionals ahead of time (available for download here).
Tips for Parents
The quality of care that families receive can be influenced by which staff members they interact with3, which is largely out of families’ control. However, there are some things parents can do to help get a successful outcome1-8:
- Plan ahead. Preparing and bringing a ‘care package’ can make the ED visit easier – Given the nature of the emergency, it may not be possible to have a care package available. However, if the situation allows for some planning ahead of time, bring distraction items, fidgets or other items that help with sensory challenges. Other things that may help are phone chargers, external batteries, and snacks (if the child is allowed to eat, depending on their medical needs). Having such a care package on ‘standby’ for when it’s needed is advised. Consider printing out multiple copies of the completed ‘This is My Child’ (here) form so they are ready in the standby ‘care package’. Later in the Toolkit, we offer questions to guide what may be good to put in the ‘care package’
- Advocate for the child. Let the health care providers know the child’s needs, abilities, sensitivities, and ways that could soothe your child. There may be accommodations available in the ED.
- Try to stay engaged in the child’s care. Typically, nobody knows a child better than their parent. Communicating thoughts, ideas, and strategies to health care providers is important. Some health care providers may not be familiar with autism and the child’s unique strengths and needs, and a parent’s guidance can help them provide better care.
- Some organizations have created tools that might help families communicate various important details during a medical encounter.9,10 For instance, a team at the Hospital for Sick Children in Toronto and the University of Alberta devised forms called ‘About My Child’ and ‘This is My Child’ respectively. These provide brief information, provided upon ED registration, that guide ED staff on how to provide care in a way that is sensitive to the child’s needs. You can download a blank copy of the ‘This is My Child’ here.
ACTIVITY #1: WHAT MY CHILD WOULD LIKE AND BENEFIT FROM IN AN ED ‘CARE PACK’
- What activities comprise a typical day in your child’s life?
- If not already listed, identify activities that are enjoyed by, and/or are soothing to, your child?
- If you were going on a long trip, what might you take for your child to do while travelling? Add these to your list.
- From the lists, cross out repetition and items that you feel would not be appropriate or feasible in an emergency department situation?
With this list, you can create a ‘Care Pack’ and keep it in a safe place at which other key people could know about. Then, the Care Pack can be immediately accessed, if needed. It also would be wise to keep the list of these ‘desired’ Care Pack items in case the items get lost or for whatever reason, cannot be accessed in an emergency situation.
Tip: In determining where to conceal the Care Pack in your home, it may be best not to divulge this location to the child if they would be inclined to indulge in its contents before it being needed. Depending on how appealing are the items in the Care Pack to the child (hopefully they are very appealing!), knowledge of the Care Pack’s whereabouts would risk it being accessed before it is truly needed. If that happens, be sure to replenish the Care Pack.
ACTIVITY #2: SUPPORTING YOUR CHILD – TIPS TO GUIDE ANOTHER CAREGIVER:
- How does your child communicate?
- What are the items or activities your child enjoys?
- What are particular challenges your child faces in daily life? What are triggers for your child in terms of creating stress or struggle?
- How would you know that your child is stressed or struggling?
- What things, people or activities would help to calm your child or help them feel better when distressed?
Tips for Health Care Providers
In the situation above, Kelsey was compliant and willing to sit calmly while she was being examined. This is not always the case, especially when a child is in pain or scared and may be overwhelmed. If the child arrived by ambulance, some regions do not allow a caregiver to ride in the ambulance with them- which can cause a great deal of distress for everyone involved. As one parent reviewer of this toolkit described, “My nonverbal son was only at a level ‘6’ of distress before he got in the ambulance after a particularly bad seizure, but even though I was driving behind the ambulance the whole way and he could see me, once he arrived at the hospital he was at a level ‘10’.” One of the most upsetting things for her son has to do with his sensory processing differences. He doesn’t like having anything ‘sticky’ on him, including electrodes. If he absolutely has to have one, he needs them to be put on both sides of his body so it feels ‘even’ for him. Because his mom was not in the ambulance, he spent the whole ride in distress and he was unable to communicate why. While healthcare providers in the ED have no control over whether a family member can ride in the ambulance, it is important to seek to reduce distress as soon as possible. If a child arrives at the Emergency Department and is extremely upset, speaking to the parents right away and asking what could help calm their child will make the examination and treatment go much more smoothly.
Here are practices that can assist during the visit of a child with autism1-8:
- Adapt care to the child’s unique needs, including:
- Communication style
- Consider potential triggers
- Implement strategies to optimize care.
- Recognize parents as partners in care and experts on their child
- Remember that autism is a largely non-visible disability
- Each individual with autism is unique and has their own set of strengths and challenges that can impede care. Parents can provide guidance on these. For instance, some children may be minimally- or non-verbal but others may be able to communicate with you directly. Some nonverbal children are still able to communicate their needs via assisted communication devices. Parents may be able to act as ‘translators’ if needed.
- Remember that parents can help fill in knowledge gaps related to the child and their care needs.
- Support families to spend as little time as possible in the waiting room, and minimize changes/transitions.
- Create a calming and child-friendly environment. Provide ways to limit sensory intensity when possible
- Introduce resources such as Child Life Specialists to better understand the child’s needs and ways to adapt care
- Provide quiet places for the child
- Have a variety of distraction items, including Wi-Fi access and art supplies
- Some health care providers on the team may have more experience related to autism. Deploy these team members to build ED knowledge and resources
- Child- and family-centred care is critical to effective service. Parents particularly appreciate kind, genuine overtures and clear and sensitive communication with the child and family.
- Parents may feel uneasy about disclosing an autism diagnosis2 for fear of stigma, or that disclosure being overheard by their child. Ask parents how to best provide care for their child, and trust their judgment and experience.
- Parents report feeling tired having to repeat their story over and over. 2 Communicate diagnostic information and the child’s needs to your team before seeing the child (when possible).
- Parents may be overwhelmed and tired. Referring them to supports as needed (e.g., a hospital social worker) can be helpful.
- Consider and assist with resource access, as desired by the family. For instance, a social worker in the hospital can help make connections to community resources, while promoting family-centred care, empowering families, facilitating communication, advocating for families, and assisting parents in navigating the health system.6
- Capacity building through education and professional development can help move forward.
- Education can take many forms: professional development sessions, printable materials, simulated scenarios with the care team, web content, mentoring or specialist presentations during rounds.
- Trainees should receive education and clinical support on working with children with autism and other developmental disabilities.
- Connect families with follow-up care. This can potentially reduce future ED visits and improve ED care for children and their families.
- Toolkits for working with this population have already been developed11,12 and others continue to be created. Reviewing these can provide additional guidance to clinicians.
Questions for Reflection
What are some things that Douglas did well during this visit?
What were some barriers the family faced? What could Douglas have done differently?
When you reflect on Kelsey’s ED visit, what are some things that health care providers did well?
What were some barriers to care? What are improvements that could be made?
What are some ways medical professionals can improve care to children with autism?
Autism, emergency, emergency department, hospital, health care provider
- Nicholas, D.B., Zwaigenbaum, L., Muskat, B., Craig, W.R., Newton, A.S., Kilmer, C., Greenblatt, A., Roberts, W., Cohen-Silver, J. (2016). Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder. Social Work in Health Care, 55(6), 409-426. doi:10.1080/00981389.2016.1178679
- Muskat, B., Greenblatt, A., Nicholas, D.B., Ratnapalan, S., Cohen-Silver, J., Newton, A.S., Craig, W. R., Kilmer, C., & Zwaigenbaum, L. (2016). Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments. Autism: International Journal of Research and Practice, 20(8), 986-994. doi:10.1177/1362361315621520
- Zwaigenbaum, L., Nicholas, D.B., Muskat, B., Kilmer, C., Newton, A.S., Craig, W.R., Ratnaplan, S., Cohen-Silver, J., Greenblatt, A., Roberts, W., & Sharon, R. (2016). Perspectives of health care providers regarding emergency department care of children and youth with autism spectrum disorder, Journal of Autism and Developmental Disorders, 46(5), 1725-1736. doi:10.1007/s10803-016-2703-y
- Nicholas, D.B., Zwaigenbaum, L., Muskat, B., Craig, W.R., Newton, A.S., Cohen-Silver, J., Sharon, R.F., Greenblatt, A., & Kilmer, C. (2016). Toward practice advancement in emergency care for children with autism spectrum disorder: The perspectives of parents and health care providers. Pediatrics, 137(s205). doi:10.1542/peds.2015-2851S
- Lunsky, Y., Tint, A., Weiss, J.A., Palucka, A., & Bradley, E. (2018). A review of emergency department visits made by youth and adults with autism spectrum disorder from the parent perspective. Advances in Autism, 4(1), 10-18. doi:10.1108/AIA-08-2017-0019
- Morris, R., Muskat, B., & Greenblatt, A. (2018). Working with children with autism and their families: Pediatric hospital social worker perceptions of family needs and the role of social work. Social Work in Health Care, 57(7), 483-501. doi:10.1080/00981389.2018.1461730
- Kirsch, S.F., Meryash, D.L., & González-Arévalo, B. (2018). Determinants of parent satisfaction with emergency or urgent care when the patient has autism. Journal of Developmental and Behavioural Pediatrics, 39(5), 365-375. doi:10.1097/DBP.0000000000000573
- Straus, J., Coburn, S., Maskell, S., Papagianopoulos, J., & Cantrell, K. (2019). Medical encounters for youth with autism spectrum disorder: A comprehensive review of environmental considerations and interventions. Clinical Medicine Insights: Pediatrics, 13, 1-7. doi:10.1177/1179556519842816
- My Health Care Visit: Understanding Today’s Visit and Follow-up. Malhas, M., Hermans, H., Orr, E., Salonia, C., Zaretsky, L., & Lunsky, Y., Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019.
- About My Health: Learning about the healthcare and communication needs of adults with intellectual and developmental disabilities. Melhas, M., Hermans, H., Orr, E., Salonia, C., Zaretsky, L., & Lunsky, Y. Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019.
- Adaptive Functioning and Communication in Adults with Intellectual and Developmental Disabilities: Fact Sheet. Edwards, B. & Temple, V., Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019.
- Communicate CARE: Guidance for person-centred care of adults with intellectual and developmental disabilities. McNeil, K., Bell, E., Boyd, K., Heng, J., Sullivan, W.F., Vogt, J., Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019. Care Program of Surrey Place, Toronto, 2019.
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