By Sonam Saxena
“It is always hard for me because I don’t have the words that normal people have to communicate with. I don’t always know how to respond properly to questions from health care providers.”
This sentiment is not uncommon for autistic people, who are predisposed to more physical, mental and social health problems than the non-autistic population and also experience significant disparities in access to care, as demonstrated by greater emergency department use, lower use of preventative services and less satisfaction with patient-provider interactions. Poor health outcomes are partly attributable to provider-level and system-level barriers in access. Provider-level barriers often stem from poor communication, lack of knowledge about autism, and, at times, unwillingness to make certain accommodations. Common system-level barriers include insufficient coordination of care and lack of support from medical providers. These barriers are heavily intertwined.
Provider-level barriers
Individuals with autism may feel discomfort when requesting help from medical providers, who can make inaccurate assumptions about autistic people’s abilities or be inflexible in how they communicate with patients. Some reports attest that providers sometimes over-attribute behaviors to autism rather than other medical conditions, are condescending when patients use communication aids, and are unwilling to adjust to using written communication even when it accommodates autistic people.
Poor communication and lack of knowledge about autism point to the need for increased training for clinicians and providers. A 2015 study estimated that three quarters of primary care physicians feel unprepared to care for someone with autism, and many don’t know which adults in their clinics are autistic. In general, “few healthcare providers, along with many other professionals, are provided with training on autism including the common communication or sensory challenges that many individuals on the spectrum experience,” describes Dr. Heather Nuske, psychologist on faculty at the Penn Center for Mental Health.
Given the heterogeneity of patients on the autism spectrum, training and continued education about different ways to support autistic patients is crucial. Including simple accommodations such as emailing details about the appointment ahead of time or talking directly to autistic patients rather than solely to their guardian can help make the patient more comfortable before and during the meeting.
“With my autism it is very difficult for me to understand and follow all the different appointments and procedures I have to schedule and how to do it, and no one will help me since apparently people magically become competent at these things before they turn 21.”
System-level barriers
System-level barriers also indicate the need for better accommodations, both physical and logistical. Coordination of care is especially important for autistic individuals who are transitioning from pediatric care to adult care, given the well-documented “services cliff”, incredibly which occurs when autistic individuals are no longer eligible for educational and health care services because of their age. One individual shared:
“With my autism it is very difficult for me to understand and follow all the different appointments and procedures I have to schedule and how to do it, and no one will help me since apparently people magically become competent at these things before they turn 21.”
Ensuring that healthcare systems coordinate care across the lifespan is critical to ensuring that autistic youth and adults are not left behind and can successfully navigate the services they need.
Healthcare systems can support autistic patients in other ways. One story shared how an autistic adult experienced severe anxiety before medical visits but used a picture schedule and role-playing ahead of time to reduce anxiety before the next visit. These types of easy-to-implement techniques, coupled to training for the physicians and staff as well as dimmed lights and quieted noises in the office, improved his experience.
Another option is for health systems to motivate providers to adopt the Autism Healthcare Accommodations Tool (AHAT). The AHAT is a tool that helps create a personalized accommodations report for autistic patients when seeing their primary care physicians (PCPs). The AHAT includes general and personalized recommendations report for the PCP to increase accommodations for the patient before, during and after the visit. This tool can help ensure self-advocacy, clarity and specific action items for the provider before the meeting. Incentivizing this use, perhaps by incorporating these toolkits into patient portals, benefits the individual client by increasing comfort during the visit.
Often, recommendations to improve care for autistic people have emphasized more patient self-advocacy through improving their health literacy. Poor skills in each of these categories are associated with adverse outcomes like hospitalizations, incorrectly following medication regimens, and making suboptimal health decisions. Increasing health literacy specifically for vulnerable populations can also increase shared decision-making (SDM), where the patient, guardian and physician collaboratively discuss treatment options, leading to improved satisfaction, adherence and health outcomes.
Increasing health literacy, especially for more vulnerable populations, must also go beyond simply providing information. Increased training for providers and more accessible technologies from their organizations are just a start. Dr. Nuske also suggests using “visual tools like flow charts or diagrams to help describe complex information, and written materials, like a summary of the visit and next steps.” She explains that this “takes the pressure off needing perfect auditory processing and comprehension during the social encounter of the provider-patient interaction.”
It is also critical that efforts don’t place the burden on the patient rather than the providers that create these obstacles in the first place. Health literacy is based on empowering the patient to seek information and become more prepared and involved in medical decision-making, but doing so requires sufficient tools for communication, access to information, and a willingness on the part of clinicians and health system leaders to use these tools and engage patients in their own care decisions.