As a parent of a nonverbal child with autism it has been critical that members of my son’s medical team understand and appreciate the connection between his physical pain and his uncharacteristic behavior. Early on in my journey to secure appropriate medical care for my son, I was given a critical piece of advice from our pediatrician. He once told me “whenever there is a dramatic change in my son’s behavior that could not be readily explained by some known cause, to pick up the phone and bring him in to be seen.” I did not realize at the time how rare and how invaluable this piece of medical advice would be for our family. In fact, I can recall an occasion when my son started to randomly bite his hand. In an effort to stop the biting, the educators working with my son immediately began formulating a behavior plan to address this self-injurious behavior. But I thought, what if there’s more to it. I remember calling my pediatrician about the biting and bringing my son in to see him. As it turned out, my son had a raging sinus infection. Once the infection was treated, the biting behavior vanished.
To an inexperienced physician, especially in an emergency department (ED), assumptions on how to treat an initial presentation are often made based on an assessment map for a typical child. During a recent trip to the ED with my son, the physician on duty made a determination that my son’s pain level was low based on his behavior. He was not crying in pain and was not showing any other signs. My son was simply curled up on a stretcher, lethargic and weak. The imaging studies suggested that he had a small bowel obstruction and a CT scan was needed to confirm this diagnosis. The ED physician stated that “with children with challenges like your son, we do not think a CT scan would be feasible.” All I could think of was, if a CT scan was the standard of care for children presenting with abdominal pain and persistent vomiting, then my son would have a CT. A CT scan was eventually done and did confirm his diagnosis.
I see it as critical that ED medical staff get a complete picture of a child’s profile before jumping to assumptions about the level of pain or the degree to which a child with autism may cooperate on an exam. We as parents are key members of the treatment team that must educate providers that each child on the autism spectrum is unique. We have to work together to make sure that assumptions aren’t made based on previous experiences with other individuals on the spectrum. My son is so fortunate that his medical team is composed of exceptional professionals who understand that a child with autism is a child first and that behavior often serves as a way to communicate. Other medical professionals need to learn how to translate uncharacteristic behaviors. Understanding that each child with autism is unique, and that medical comorbidities exist. Each and every child needs to be comprehensively evaluated in an effort to provide the highest quality of medical care for individuals on the autism spectrum. For more information regarding medical comorbidities and autism see: https://nationalautismassociation.org/pdf/MedicalComorbiditiesinASD2013.pdf