Building trust takes time with every patient. But given that April is Autism Acceptance Month, it’s a great time to raise awareness of how far that trust can go with individuals on the spectrum. Building trust with patients who are autistic requires additional strategies. The good news is that those efforts can be significant in establishing better communication and care.
For example, a review of healthcare professionals found that providers who practiced an open mind about patients on the spectrum had better results. The research found that when health providers communicated effectively, their patients were more likely to get the medical management they needed. Another study found that a robust understanding of barriers to accessing healthcare across the lifespan of individuals with autism is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes.
So, how do you support these patients? Here are some starting points to consider.
Ask about how they identify
Over the past few years, there has been a significant shift in adopting person-first language. This helps reduce stigma in some cases and recognizes individuals before the diagnosis. For example, rather than "diabetic," person-first language is "person with diabetes." Or rather than alcoholic, use "someone with alcohol use disorder."
That said, some communities prefer identity-first language because they consider certain characteristics to be inseparable parts of their identity—and this includes the autistic community. That's why many who are autistic prefer to call themselves that instead of "person with autism." However, that's not the case for everyone. For instance, the Autistic Self Advocacy Network notes that many parents of children with autism prefer person-first language.
What’s an easy way to find out what's preferred? Just ask. Clarifying whether to use identity-first or person-first language can go a long way toward building trust and strengthening the patient-provider relationship. Similarly, some who have autism prefer the term "neurodivergent," which can describe not only those on the autism spectrum but also people with ADHD or learning disorders.
Learn more about current perspectives on autism
According to commentary in the AMA Journal of Ethics, many in the healthcare field have been trained to think of autism using a deficit model. This means a focus almost exclusively on impairments and limitations.
This ultimately leads physicians to see individuals with autism as needing to be fixed. The American Medical Association notes that the neurodiversity movement challenges us to rethink autism through the lens of human diversity. It asks us to value diversity in neurobiological development as we would value diversity in gender, race, ethnicity, religion, or sexual orientation. With this perspective, a provider can see the complex combination of cognitive strengths and challenges.” This is a marked difference from the assumption that those with autism need to be changed or are working at a deficit.
Create a relaxed environment
Because autism is on a spectrum, different patients can have different preferences. However, a good place to start is by creating a relaxed and peaceful environment with lower levels of sensory stimulation. For example, minimize bright lights and noises to prevent the patient from feeling overwhelmed.
Just going to a provider's office may create feelings of anxiety or overstimulation. So, taking steps to reduce these feelings can help build trust. Consider a telehealth visit if a physical examination isn't needed. Although this can still present some challenges, it allows the patient to feel more comfortable since they're in a familiar setting.
The International Board of Credentialing and Continuing Education Standards (IBCCES) suggests communicating in a relaxed way without slowing speech too much, whether in an exam room or over a screen. Keep the lines of communication open to ensure the patient is processing what is being said.
Even with slower conversation, though, competence should be presumed, the IBCCES advises: "Approach the situation as if the patient can understand you. That is simply showing respect toward the individual. I have personally heard many an autistic individual express distaste towards healthcare providers who start out talking to them as if they are severely mentally challenged."
Consider written communication
Some patients with autism prefer written interactions rather than in-person or phone-based discussions, the IBCCES adds. This might be true even if in the same room, so offering the opportunity to use a computer or smartphone—or even a standard notebook and pen—rather than talking directly can show respect for a patient's preferred communication style.
Another aspect of written communication is providing clear, to-the-point instructions to the patient. The IBCCES notes that patients with autism take everything literally, so you need to say exactly what you mean without using figurative language with idiomatic expressions. Visuals in a document, such as images and photos, are also helpful for clarifying instructions and creating clearer communication between the provider and their patients.
Like any other type of patient interaction, allowing the patient to lead the way in terms of communication preferences and identification can build trust over time. This can also help patients on the autism spectrum feel more comfortable discussing their needs.
For additional provider resources, visit massgeneralbrighamhealthplan.org/providers/bh-resources
If you are a patient with autism or a caregiver of one, you may want to learn about Aspire, a Massachusetts General Hospital program that specializes in helping children, teens, and adults on the autism spectrum achieve success. The Lurie Center for Autism at Mass General for Children can also provide valuable resources and support.
Stay connected with Mass General Brigham Health Plan by following @MGBHealthPlan on Instagram, LinkedIn, and Facebook.
