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Building Alliances for Autism Needs in Clinical Encounters

more than 1 IN EVERY 100 CHILDREN HAs A DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD)

 

Youth with ASD have unique sensory, emotional and communication needs that can make healthcare experiences challenging. Because these experiences are challenging, families of youth with ASD may delay or avoid seeking healthcare until problems are more complex or serious. This can lead to greater health difficulties and higher healthcare costs.

Our goal is to create the best possible healthcare experiences for youth with ASD, their families and their healthcare providers. By doing this, we hope to increase families' access to high quality care and improve the health of youth with ASD.

We started our work by interviewing staff and families of youth with ASD about their experiences around the time of surgery and about what strategies could be helpful in improving their experiences. We summarized our results in the video below.

As you may notice in this video, healthcare providers play an important role in shaping the experiences of youth with ASD and their families. Research and opinions from experts (including families) suggest that the best possible experiences for youth with ASD and their families comes when healthcare providers partner with families to provide care that is empathic, coordinated and tailored to the individual needs of each child. The approach to care that can create the best experiences can be summarized with the acronym PACE.

P = Partnering with families | A = Assessing needs and tailoring care | C = Coordinating care | E = Expressing empathy

 

We know that healthcare providers want to create the best experiences possible for youth with ASD and their families, but sometimes feel unprepared to do so. The aim of BALANCE is to provide healthcare providers with the knowledge, skills and support to feel comfortable providing PACE-consistent care for youth with ASD and their families.

 

 

 

Partnerships

Families are an important part of the team when caring for youth with ASD.

Partnering with families means acknowledging that caregivers know their children best, and using their expertise to collaboratively develop a care plan.

Partnering also means sharing information in an open, clear and accessible way.

Assessing needs and tailoring care

Each child with ASD has unique sensory, emotional and communication needs.

Assessing individual needs provides an opportunity to tailor care to make the healthcare encounter less stressful. For example, youth with ASD may benefit from having lights turned down, or using visual schedules to communicate.

Coordinating care

Coordinating care means sharing information within the team. Asking the same questions repeatedly should be avoided wherever possible.

Differences in opinions are inevitable given the complexity of caring for youth with ASD. Seeking an understanding of others’ perspectives can improve collaboration and strengthen relationships, even when there are disagreements.

Expressing empathy

Parents and caregivers are stressed when they bring their child in for appointments and have often done a great deal to prepare their children and themselves.

Relationships matter. Even if children become distressed, experiences can still be positive for families if healthcare providers express empathy and are there to support families.