3 practices that help create a safe space for the Autistic community

During Autism Acceptance Month we want to provide opportunities to increase understanding and acceptance of people with Autism, fostering worldwide support. Below you'll find three practices that help create a safe space for Autistic patients in a healthcare setting, but know these are applicable to any environment.

Today, healthcare professionals are employing earlier screening for Autism as research shows early detection leads to better patient outcomes. The American Academy of Pediatrics (AAP) recommends that all children be screened for Autism Spectrum Disorder at ages 18 and 24 months, along with regular developmental surveillance. An earlier diagnosis only benefits Autistic patients providing eligibility for resources like applied behavior analysis, social skills training, occupational therapy, physical therapy, sensory integration therapy, and the use of assistive technology.

According to the Centers for Disease Control and Prevention (CDC), 1 in 54 children has been diagnosed with Autism Spectrum Disorder (ASD)—impacting children of all racial, ethnic, and socioeconomic groups. With more diagnoses and knowledge about ASD, there are strategies providers can use that offer better care experiences for patients. Communication can be challenging for the estimated 40% of children with ASD who are non-verbal.

Know the difference between a tantrum and an Autistic meltdown

To someone treating several patients a day, a tantrum and a meltdown may look and sound the same, but they are entirely different. Tantrums are born from anger and frustration—and are typically motivated by an audience or something a child wants. Autistic meltdowns happen with or without an audience when an Autistic person is overwhelmed by an external stimulus overload. When in doubt, remember the key differentiator between the two is that tantrums have a goal and meltdowns do not; meltdowns are a response.

Understanding the differences between a tantrum vs. a meltdown will help you react and implement sensitivity to your Autistic patients. While some individuals learn to calm themselves, there are ways for you to diffuse the situation without judgment. It can be as simple as giving them some time and space to recover.

Be mindful of sensory triggers

In addition to communication challenges, Autistic people are typically over-sensitive to some senses, under-sensitive to others, and sometimes both. A low arousal environment can help with sensory differences such as dim lighting, headphones, or a weighted blanket. At Mass General Brigham, Dr. Sarabeth Broder-Fingert developed a program to improve the hospital experience for Autistic children after witnessing firsthand the importance of providing compassionate care to patients with disabilities.

She explained, “I had an experience that opened my eyes. While I was an intern in pediatrics at Mass General Hospital for Children, I was taking care of a 10-year-old boy who had Autism and was admitted for stomach pain. He was with us for about a week, and I saw that he and his family were having great difficulty. 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. That experience made me think we’re not providing compassionate care for this patient and his family if we don’t know how to be sensitive to this child’s needs.”

Motivated to change future outcomes, Dr. Broder-Fingert and her colleagues created the customizable Autism Care Questionnaire. This document is added to a patient’s file, disclosing sensory sensitivities, safety issues, anxiety triggers, and dietary needs. Dr. Broder-Fingert hopes to share this program with other hospitals.

Acknowledge Autism instead of ignoring it

Children with ASD can demonstrate delays in language, social, and learning skills, while their ability to move around resemble other children. Some of these delays may result in a lack of eye contact or no response. Whether they are verbal or non-verbal, it’s vital to acknowledge Autism rather than treat it like the elephant in the room. Whether it’s during check-in at the front desk or when checking a patient’s vitals before the doctor visits, everyone should understand that what might be seen as rude behavior from a child without ASD is not personal when it comes from a child with ASD.

Trying to avoid mentioning ASD can be seen negatively, especially by the patient’s parent. For example, if an Autistic child doesn’t want you to listen to their heart, there are ways to improvise. If they have a stuffed animal, pretend to check the toy’s heartbeat before checking the patients.

Additional resources

For more information, you can find resources at Autism Speaks to share with patients' parents. You can also visit our Behavioral Health Resources page with screening tools and more.