Improving Medical Care for Autistic Patients and Families | Patient Centered Care and Trauma Informed Care for Pediatric Patients

What does the experience of a doctor visit or ER visit look like to a child with Autism? How can we make those visits less stressful for the child the family?

Guest Post by

Christie A., Nurse Outreach Coordinator at the Center for Pediatric Traumatic Stress

What does the experience of a doctor visit or ER visit look like to a child with Autism? How can we make those visits less stressful for the child the family? April is Autism awareness month and with the latest numbers from the CDC showing 1 in 68 kids has a diagnosis on the “spectrum”, providers must be prepared to meet the needs of this growing patient population. Challenges such as, sensory issues, varying levels of communication, feeding issues and neurologic conditions are just a few of the unique characteristics that may come with an autistic patient.

Trauma informed care provides the perfect lens to look at the unique needs of Autistic patients and their families. Minimizing distress, providing emotional support and supporting the family are the key elements of trauma informed care. With that in mind, let’s look at some trauma informed interventions that are available to help minimize the impact of difficult medical visits or procedures and help children cope.

Trauma informed care DEF Protocol

Autism Speaks has a toolkit available to help address some challenging behavior that we, as providers, may encounter. Sometimes the difficulties of autism can lead to behaviors that are quite challenging for us to understand and address. There is also a toolkit created specifically for Autistic children to provide resources to help minimize the traumatic aspects of a doctor or ER visit. The ATN/AIR-P Blood Draw Tool Kit is a great example of this. The kit’s resources include ready-made visual supports, social stories, relaxation and distraction techniques, and tips designed specifically for children with ASD. All toolkits from the Autism Intervention Research Network on Physical Health (AIR-P) draw recommendations from evidence-based findings of research involving children and families dealing with autism.

One additional resource that works to improve the hospital experience for autistic children is a document created by Dr. Broder-Fingert to minimize the stress of hospitalization. Dr. Broder-Fingert reflects on a situation that was the inspiration behind the tool and states: “I noticed that his mother, who seemed incredibly stressed, never seemed to leave his bedside, though she clearly needed a break. She told me she was too afraid to leave because she feared a staff member might come in who didn’t understand how her son communicated and didn’t understand his many sensory issues. She feared what would happen if he couldn’t cope.” Having parents fill out this document, before admission, provides the health care team with important information on how to care for the child. This in turn, gives the family the support they need to make the hospitalization a more positive experience.

Medical environments can place a huge mental and physical burden on Autistic children and their families. Take steps to prepare yourself and find ways to improve these experiences, minimize stressful situations and empower families to partner in the care their children. Share your experiences on our Facebook page!

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