Facilitating Healthcare Visits for Autistic Adults

By Jodi Panepinto, MSN, APN-C, Managing Editor, Zynx Health

Adults with disabilities, including those with autism spectrum disorder (ASD), experience significant and ongoing environmental, attitudinal, and policy barriers when accessing healthcare that extend beyond the physical barriers often thought of with the Americans with Disabilities Act.¹

Both structural-environmental and process barriers contribute to healthcare disparities. Negative stereotypes on the part of the healthcare provider may result in lower-quality care and fewer provided services.¹ In addition to these external barriers, emotional barriers within the autistic patient can impede the ability to follow through with a scheduled visit.

In one study, 100% of expert primary care providers interviewed believed that providing accommodations for patients who have an autism diagnosis deters providers from treating them, whereas 67% of providers with moderate experience and 20% of novice providers reported the same.²

To improve healthcare for autistic adults, interventions targeting autism-specific barriers are needed.³ Thus, the purpose of this review is to provide simple yet effective interventions and awareness aimed at recognizing and minimizing these barriers.

Problem

Autistic adults and their caregivers report that there is minimal use of strategies by healthcare providers to improve care during visits. Only 6% of providers are reported to adjust lighting, 18% allow for alternative seating, 20% implement a practice visit, 26% seek ways to decrease wait times, and 40% use strategic scheduling.²  The same study showed that when strategies were used, all respondents reported that the strategy was helpful.

The uneven skills of adults with an autism diagnosis result in healthcare providers’ making false assumptions about a person’s abilities to understand healthcare issues, communicate, or navigate the healthcare system.⁴

The following issues are reported more often by autistic adults as compared with those with other or no disabilities, as measured by the long-form Barriers to Healthcare checklist³:

• Behaviors misinterpreted by healthcare provider or staff
• Difficulty communicating with healthcare provider or staff
• Difficulty handling the waiting room
• Difficulty identifying and reporting pain and/or physical symptoms
• Difficulty moving or communicating effectively when in crisis
• Fear or anxiety and embarrassment preventing seeking primary care
• Finding it too difficult to seek primary care or follow-up with primary care
• Frustration or anger and lack of confidence that prevent seeking primary care
• Inability to process information quickly enough to participate in real-time healthcare discussions
• Inability to understand the healthcare system or finding it too difficult to navigate
• Sensory discomfort inside healthcare facilities
• Sensory issues that inhibit effective communication or make tests, screenings, and examinations difficult or impossible
• Trouble following medical directions in the way presented or following spoken directions
• Worry that the stress of interacting with the healthcare system will cause a loss of control (eg, meltdown)

These issues occur in autistic adults as compared with adults without ASD or other disabilities³:

• Appointments are too short to accommodate communication needs
• Cost-of-care concerns prevent seeking primary care
• Difficulty following up with primary care
• Difficulty obtaining personal assistance
• Difficulty getting reimbursements for atypical treatments
• Difficulty translating medical information into concrete steps
• Difficulty with paperwork
• Fatigue or pain that prevents primary care
• Healthcare facility too far to travel to
• Inability to locate a healthcare provider willing to accommodate needs
• Inadequate caregiver, family, or social support
• Insurance does not cover care coordination services
• Insurance does not cover medications or co-payments are too high
• Missed appointments due to memory problems
• Social isolation
• Staff not believing when new symptoms are reported
• Staff not taking communications seriously
• Transportation is too costly
• Office wait times are too long
• Unwillingness of the healthcare provider or staff to communicate in the preferred mode

Recognize Barriers

The top 5 autism-specific barriers reported by one study include fear or anxiety, not being able to process information quickly enough, concerns over cost, sensory issues caused by healthcare facilities, and communication difficulties.³

A systematic review of 6 studies highlights the following barriers to healthcare access⁵:

• Communication (5 studies)
• Sensory sensitivities (5 studies)
• Challenges with bodily awareness (5 studies)
• Providers’ degree of flexibility (5 studies)
• Slow processing speed (4 studies)
• Availability of supports (4 studies)
• Complexity or inaccessibility of healthcare system (4 studies)
• Emotional aspects, anxiety or embarrassment (4 studies)
• Need for consistency (3 studies)
• Providers’ knowledge/lack of knowledge about ASD in adults (3 studies)
• Negative healthcare experiences (3 studies)
• Stigma around ASD (3 studies)
• Societal issues that affect health, including socioeconomic factors (2 studies)
• Highly variable needs of those with ASD (2 studies)
• Distance to get help is too far (2 studies)
• Healthcare problem is not perceived to be serious (1 study)
• Autistic adult wanting to handle healthcare problem on their own (1 study)
• Autistic adult too busy to handle healthcare problem (1 study)
• Healthcare problem perceived to be temporary (1 study)
• Others not wanting caregivers to seek help (1 study)

Evaluate Communication Ability and Preferences⁴

Those on the autism spectrum can display a heterogeneity of communications skills; providers should not assume that the patient cannot understand information based on their fluency of communication. Conversely, fluid speech or advanced vocabulary does not mean that communication difficulties do not exist. Assess the following in adults who have ASD:

• Ability to understand spoken language
• Ability to speak
• Ability to read and write
• Preferred communication style/method
• Whether alternative and augmentative communication is used
• Method of communication between visits
• Whether environmental factors or stress affect communication

Minimize Barriers^2,4

Before a healthcare visit:

• Allow for a practice visit
• Employ strategic scheduling (eg, first appointment of the day)
• Encourage the patient to bring a list of needs/questions to the appointment
• Schedule longer appointment times
• Avoid rescheduling
• Ensure the patient knows what to expect

During the healthcare visit:

• Minimize wait times
• Provide an alternative area from the waiting room
• Provide alternative seating
• Adjust lighting
• Use a quieter room
• Use the patient’s preferred method of communication, including assistive devices
• Use specific and concrete language, avoiding figures of speech and broad questions
• Do not force eye contact
• Recognize stimming behavior
• Allow the patient to use devices to decrease sensory stimuli
• Provide examples for patient to choose from when describing symptoms
• Warn the patient before touching them, and avoid unnecessary touching
• Limit the amount of time a patient needs to be undressed or in a gown
• Explain all procedures and tests prior to administering and demonstrate/show equipment that will be used
• Demonstrate what is expected of the patient during procedures and tests
• Offer pictures and diagrams
• Allow extra time to process sensory input and for the patient to respond
• Provide written information
• Check on the patient throughout the examinations and procedures to ensure they are handling everything
• Allow patients to signal if a break is needed
• Work collaboratively with the patient

After the healthcare visit:

• Use a social story
• Use a visual schedule for the healthcare plan
• Provide detailed, step-by-step directions for the healthcare plan
• Schedule with the patient any follow-up appointments or tests
• Provide information to the patient regarding how they can communicate with the office in the future
• Contact the patient after the visit to ensure all instructions were understood

Strategies for Effective Triadic Communication⁶

Often, autistic patients present with a caregiver. The following allows for a more effective triadic interaction:

• Ask the patient about communication preferences, if the caregiver should be present, and if they are comfortable with eye contact.
• Advise caregivers that the patient will be spoken to directly, but to listen to the conversation as if the caregiver were being spoken directly to and to fill in gaps as needed when prompted. Providers should communicate to the patient directly when they understand and do not understand.
• Assess the patient by asking questions throughout the visit and looking for a response. Persist in curiosity over time, as it may take more than 1 visit for the patient to become comfortable.
• Augment the healthcare visit by using the patient’s preferred communication tools, pointing things out when possible, explaining procedures, and screening for hearing and vision impairments.
• Allow time to build rapport and address emotions. Allow enough time for patients to respond. Check to be sure the patient and caregiver understood what was said. Provide written communication of the management plan.

COVID-19 and Healthcare Access

The ongoing pandemic has affected all people in various ways. Attention needs to be paid to adults on the autism spectrum to ensure continuity of services. One study showed that among 59% of surveyed patients with an intellectual disability, autism, epilepsy, or brain injury, 56% reported that access to regular healthcare has been disrupted by COVID-19. However, almost all respondents reported that access to prescription medications has not been affected. Fewer than half stated that no new challenges to seeking healthcare have occurred during the pandemic. Of those feeling anxiety or depression due to COVID-19, 80% stated they had access to emotional support or services.⁷

Summary

Adults on the autistic spectrum have been identified as a population experiencing significant barriers to effective healthcare, even before the COVID-19 pandemic. Persons with disabilities, including autism, are therefore at increased risk of negative health outcomes. Studies have shown that even simple measures can minimize some of these barriers, leading to more effective healthcare visits. Healthcare providers should implement into their practices environmental- and practice-oriented measures even before the encounter, as outlined in this review. In addition, allowing for ample time during the visit can help the autistic adult contribute meaningfully to their healthcare. Providers need to be cognizant of the stimuli that may not affect others but may result in less than optimal experiences for individuals diagnosed with autism. Practicing patience and understanding when interacting with autistic adults will help to minimize barriers.

References

1. Gould R, Harris SP, Caldwell K. Health care access and the ADA: an ADA Knowledge Translation Center research brief. 2019. Accessed October 23, 2020 https://adata.org/research_brief/research-brief-health-care-access-and-ada
2. Stein Duker LI, Sadie Kim HK, Pomponio A, Mosqueda L, Pfeiffer B. Examining primary care health encounters for adults with autism spectrum disorder. Am J Occup Ther. 2019;73(5):7305185030p1-7305185030p11. doi:10.5014/ajot.2019.037226
3. Raymaker DM, McDonald KE, Ashkenazy E, et al. Barriers to healthcare: instrument development and comparison between autistic adults and adults with and without other disabilities. Autism. 2017;21(8):972-984. doi:10.1177/1362361316661261
4. Nicolaidis C, Kripke CC, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014;98(5):1169-1191. doi:10.1016/j.mcna.2014.06.011
5. Mason D, Ingham B, Urbanowicz A, et al. A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. J Autism Dev Disord. 2019;49(8):3387-3400. doi:10.1007/s10803-019-04049-2
6. McNeil K, Gemmill M, Abells D, et al. Circles of care for people with intellectual and developmental disabilities: communication, collaboration, and coordination. Can Fam Physician. 2018;64(suppl 2):S51-S56.
7. Drum CE, Oberg A, Ditsch J, Cooper K, Carlin R. COVID-19 & Adults With Intellectual Disability, Autism, Epilepsy, or Brain Injuries: Health and Health Care Access Online Survey Report. Rockville, MD: American Association on Health and Disability; 2020.