“Ma’am, she needs to sit down during take-off or we will be forced to restrain her,” said the flight attendant during our (Iqbal) family trip to Disney World.
The flight attendant was describing my sister with profound autism spectrum disorder (ASD), who, due to her sensory sensitivities, was covering her ears and rocking while standing. Although flying is an infrequent occurrence for my family, visiting the doctor’s office is not, and yet these seemingly different experiences both involve the threatened or actual use of restraints. Despite our pleas, medical providers are quick to physically restrain my sister due to her self-injurious behaviors (e.g., hand-banging) and inability to communicate verbally. When seeking care for my sister’s other health conditions, doctors often admit their lack of experience caring for people with autism. During these visits, my parents and I find ourselves explaining the complexities of autism and leaving bemused. Why are her doctors not better prepared?
When I entered medical school, I quickly learned that there are important gaps in autism medical education. A 2019 study demonstrated that medical students report low knowledge of ASD, and more than 90% of students cite inadequate preparation for caring for individuals with autism. Medical students also report a greater need for increased education and training in ASD care.
This lack of preparation is extremely concerning, because the CDC estimates that in the U.S. approximately 1 in 36 children and more than 5 million adults live with autism. Health outcomes in autistic adults are poor, as they are twice as likely to be diagnosed with diabetes and high blood pressure than adults without autism. Yet, many autistic adults do not seek medical care due to not feeling understood by the doctor. It does not help that 77% of primary care physicians rate their ability to care for an autistic adult as poor or fair. It is clear that our current medical system is not equipped to care for autistic individuals and their families.
Like my sister, one in three people with autism have profound autism, which is defined by the Lancet Commission as high ASD symptom severity with co-occurring intellectual disability and limited language skills. This presentation of autism is more likely to result in greater self-injurious behaviors, aggression, and challenging behaviors. For example, the inability to communicate pain may result in self-aggression or head banging. Additionally, heightened sensory sensitivities to bright lights or loud noises in medical spaces increase the likelihood of challenging behaviors. Thus, this population is highly susceptible to being physically restrained in hospitals due to limited physician training and knowledge of ASD. My sister’s medical experiences are not the exception, but sadly the norm.
So what can we do to ensure justice and equitable healthcare for patients with autism?
It is time that we call upon medical schools across the country to amend their curriculum in order address this important gap in patient care. As autism prevalence continues to rise, it is increasingly likely that medical students will encounter and care for a patient with ASD. Thus, it is important to incorporate formal training and education in the medical school curriculum. Medical schools can refer to the CDC’s “Learn the Signs. Act Early” materials, which help medical providers diagnose and care for children with ASD.
First, it is important for medical students to understand the heterogeneous symptom presentation of autism, including the different communication styles and sensory sensitivities that exist. For example, my sister uses an augmentative and alternative communication device (iPad) to communicate her needs; doctors can learn how to incorporate this in her care. In terms of sensitivities, medical providers can learn how to adjust the lighting and reduce noise for these patients. When conducting physical exams, medical providers can communicate clearly or with visual aids before initiating physical touch.
Second, for patients with profound autism, medical students can receive training on behavioral strategies that can be used to address behaviors that are challenging. Desensitization techniques that explain medical visits ahead of time (e.g., visual aids) will help autistic patients understand what to expect. Demonstration of aspects of the examination — for example with the provider auscultating their own body with the stethoscope — helps explain procedures verbally and non-verbally.
Students should also be made aware of sensory processing differences in ASD and how to navigate physical contact with an autistic patient. Reinforcements after positive behaviors, such as praise after physical exams, and if necessary breaking down a long examination into smaller parts with breaks after each step, should be encouraged. A behavioral plan with alternatives to physical restraints should be planned and individualized for the patient.
Third, medical students should learn about the different co-occurring conditions associated with autism. Autistic patients often require care across medical specialties such as gastroenterology, neurology, endocrinology, genetics, physical medicine and rehabilitation, developmental pediatric medicine, sleep medicine, and psychiatry along with speech, occupational, and physical therapies. This holistic approach will ensure that students not only formulate a comprehensive understanding of the patient’s past medical history and current complaints, but also effectively practice whole-person care.
Finally, it is critical that medical students practice interviewing autistic children, adolescents, and adults. The Ohio State University Nisonger Center has created a curriculum for third-year medical students that prepares them to care for patients with autism through simulated interviews with autistic adults as standardized patients. Programs like this better support physician preparation and competency in the care of autistic patients.
As a first-year medical student, I am often told I am the future of medicine. As a sibling of an autistic individual, I believe it is critical that we enhance the training of future physicians to become competent providers for autistic patients.
Patients with autism deserve to be treated with the highest quality of care. Promoting greater inclusivity and neurodiversity means greater input from the neurodivergent community about how they want their care needs to be met, and building a healthcare system that can respond with humility and adroitness. This begins with the implementation of autism medical education at all medical schools, including my own. Next time I go to the doctor with my sister, I hope that her doctor will be knowledgeable, accepting, and prepared to provide the best care.
Reeda Iqbal is a medical student at Georgetown School of Medicine. Sherab Tsheringla, MD, MBBS, is a child and adolescent psychiatry resident at the Yale School of Medicine.
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