Supporting Autistic Pediatric Patients in Primary Care

With the number of children diagnosed with autism on the rise, providing care to neurodivergent youth is a part of every pediatrician’s day-to-day practice. As autistic individuals often have sensory sensitivities and different ways of processing incoming information, it is important to identify ways in which primary care providers can build a more neuroaffirming experience.   

Primary care appointments are inherently overwhelming. There are bright lights, unfamiliar spaces and people, difficult questions and lots of physical touch.  While this can be an uncomfortable experience for all children, it can be particularly aversive for autistic youth, whose social communication differences, sensory sensitivities and need for routine are often challenged and disrupted repeatedly throughout the appointment.  

We spoke to several pediatricians located in the Denver metro area who have received additional training in autism spectrum disorder from the Developmental Pediatrics Program at Children’s Hospital Colorado. As their practices have grown to focus more on the diagnosis and treatment of autistic youth, they have adjusted their procedures and clinic environments to better support these patients. Here are some suggestions:  

• Use sensory bins (fidgets, weighted blankets, etc.) to support regulation. This is offered to all patients at the start of the appointment, regardless of their diagnosis.  
• Dim lights to reduce sensory overwhelm. Sometimes, asking the patient or family at the beginning of the appointment if the lighting is ok will allow them to weigh in on the patient’s preference.  
• Allow a child to explore medical equipment prior to use, such as holding the stethoscope.   
• Narrate your actions throughout the physical exam so the child knows exactly what to expect.  

You can help a patient feel more comfortable before they even arrive for their visit. Create a social story that explains what is expected during the visit and ask the parents to read the social story beforehand so that the child is prepared for what is to come. More resources on social stories, including stories for dozens of situations, can be found on PBIS World. 

Other considerations, curated by the developmental pediatrics team at Children’s Colorado, include:  

• Set up a quiet space or sensory corner in the waiting room or provide an option for early rooming for patients who may not tolerate the waiting room or disrupt other patients.  
• Provide or offer headphones in the waiting room.  
• Review what will be done during the visit at the outset and create a “checklist” for the child to follow. Using a visual schedule with simple pictures of what will be completed is often the most appropriate for young children or those who are minimally verbal. You can download a visual checklist from Pathfinders for Autism that includes these 10 steps:  
• 1. Get weighed 
  2. Take blood pressure 
  3. Take temperature 
  4. Look in eye 
  5. Look in ear 
  6. Look in mouth 
  7. Take deep breath 
  8. Listen to chest 
  9. All done 
  10. Great job  
• Ask about their special interests. This can help build rapport and identify coping strategies throughout the appointment. Document this in your notes, as it can be useful for future visits as well.  
• Minimize open-ended questions. Instead, give children choices to pick from (e.g., is your experience more like this or more like that?).  
• When asking about mood, emotions or pain, use visuals such as emotion faces or feelings thermometers.  
• When asking about friendships and relationships, understand that these can look different for autistic youth. Be sure to ask about online relationships and screen for internet safety.  
• Offer tangible distractions during uncomfortable procedures, such as vibrating toys.  
• Provide clear, concrete examples and minimize the use of metaphorical speech when providing medical education or information. Consider the use of simple, clear visuals to support education.   

Routine care shouldn’t be dreaded or avoided by autistic children or their families. Pediatricians have the power to not only support autistic children’s growth and development, but also to make their experience at the doctor a bit more comfortable. If you’re a pediatrician, consider incorporating these recommendations into your practice. If you’re a parent of an autistic child, consider sharing this article with your pediatrician before your next appointment.