Doctors have a huge impact on an individual’s experience in their office. Some might believe that they have a great sense of understanding their patient’s needs and comforts, but how inclusive is that notion? Creating the kind of environment and communication flow necessary for individuals with cognitive impairments to facilitate a more autism-friendly visit can make all the difference. Dr. Faith Frankel shares practical advice in this video for physicians, parents and adults with autism on how to have more successful doctor’s visits.
We have put together a few tips below on how to enhance the experience of a doctor’s visit to be more autism-friendly and neuro-inclusive.
1. Speak to the Individual and Not Only the Caregiver
Make an effort to talk to or communicate with the patient and not just their caregiver. Many doctors assume a person with a disability cannot speak for themselves. It is important that they do not speak to a caregiver as if the person with the disability is not in the room. The doctor should speak directly to the person with the disability and their caregiver or direct support can assist as needed. Be sure to write down what was discussed during the appointment in plain language so that the person with the disability can go back and read or share it later with someone they trust for support.
2. Perceive The Person, Not Just The Disability
Sometimes we get caught up in the piece and not the whole picture. In the disability community, we call this “person-first” as the individual should be seen as a person and not just a representation of a diagnosis. Not everything may be “because of autism, Down Syndrome, etc.” Do not mistake unusual behavior to be due to their disability label; perhaps there is something truly wrong. This is why communication with the individual or their family member is significant. Thoughtful consideration of their baseline norms, daily activities and how they feel typically are essential.
3. Recognize the Autistic Patient and/or Their Caregivers’ Unique Perspective
As a medical professional, you might be accustomed to having a certain sequence of actions that follows for every patient you see. This could include the manner and tone you address them in, how you explain information, the order in which you check their vitals and general interactions with the patient. For an individual with a cognitive impairment, you will most likely have to reevaluate how you carry out what would otherwise be considered standard protocol.
The best way to understand your patient is through the lens of the patient or caregiver. Each person will not have the same experience or accommodations necessary to make a comfortable visit. Parents and self-advocates offer insight into what triggers the patient, makes them feel safe and what is their typical behavior or perception of pain tolerance as it may not be the same based on the neurotypical standard. Autistic adults could be asked to share their specific sensory preferences or needed accommodations. For example, a room with no fluorescent lighting or a visit without unnecessary touch. Offering flexibility can save time as well as improve one’s experience and retention as a patient.
Open communication is key here. This goes for physicians as well as patients and advocates. Making sure that your voices are heard is important and it may seem daunting at first, but do not be afraid to reach out to your provider. Collaborating with your doctor to develop effective strategies can go a long way. This includes family members and/or friends advocating for the patient, interpretation on their behalf and cooperation in decision making.
4. Shorten the Waiting Room Time
Most of us are well acquainted with the tedious wait times that involve going for a check-up. While some will find it a minor inconvenience, those with autism could be experiencing a very stressful situation in such a place. To ease this potential agitation, you could identify the irritating factors that contribute to the process and find a way to circumvent them.
Perhaps waiting in the car rather than inside could alleviate the pressure. Making room to work within these parameters makes it easier for the parent, the patient, an
d the doctor. However, it is equally significant to implement a structure that both parties can operate within. Setting expectations and familiarity with the environment will simplify and expedite the process for the patient and lessen the overwhelming feeling that would normally accompany the wait. Let the individual understand what is to come and offer your assistance in accommodating.
5. Provide Proper Training of Medical Providers on Autism/IDD-Specific Needs
“One size does not fit all.” This could not be more true for those on the spectrum or with other neurodiversities. As a doctor, take the initiative and learn more about how to better aid this population. This opens doors for you as well as your patients. It overcomes barriers of communication, creates strategy and engages shared decision making with parents and their children. AADMD is a great place to start. It is an organization created to educate healthcare professionals on how to treat patients with autism and other intellectual/developmental disabilities (I/DD).
By understanding your patient’s point of view, you can create an individualized treatment plan that better serves them and bolsters your own capabilities as a healthcare professional. This comes in the form of sensitivity to non-verbal communication, comprehending individual behavior, and considering differences in mode of verbal communication. Some patients may prefer the exam with a firmer touch, others may not. Certain patients will say what comes to mind that you may consider it rude, though those are not their intentions. And sometimes they will take what you say to be literal, so be more direct.
Proper training in the diversity of disability will bring to light what is usually misunderstood. It is the role of the doctor to be understanding and adaptable to these kinds of situations.
6. Continue to Provide Telehealth Visits
Adjustments made due to the current COVID-19 pandemic have shown to be quite beneficial and advantageous to how healthcare visits operate. Telehealth appointments are quick, convenient and provide much needed and accommodating assistance. It removes the anxiety associated with going into the office in person and especially now with the potential risks of doing so. Continuing to provide this method of consultation and communication eases the burden of transportation, waiting and scheduling through a visit.
Moreover, should an in-person visit be necessary, telehealth offers a great option for planning out the next visit, discussing treatment plans and reducing wait times before arrival. This could only enhance the work you carry out with your patients and demonstrates your understanding and consideration of their experience.
7. Provide Visual & Sensory Supports for Patients
Viewable resources could greatly improve the visit at the doctor. Diagrams of the body, visual schedules and social stories can all aid in easing anxiety in the waiting area or checkup room before the doctor arrives. Having visual supports to accompany auditory explanations can make things go a little smoother for both the patient and the doctor.
Maybe your patient needs a little more than just visuals. Having certain safe and fun objects to fiddle with on hand while you complete your checkup can help calm and distract your patient. Some individuals need to have a personal item with them and that is okay. It makes for a better and more comfortable setting for the patient if they can have something to touch and relieve their tension while on a visit. Being prepared for this is an invaluable amenity to provide for your patient. Consider putting together a “sensory kit” with something squishy, something hard, something prickly, pop rocks, chewing gum, small weighted blanket, small scarf to cover eyes or ears or run through fingers, etc.
Supports could also extend to allowing the patient and the caregiver to visit the office a few times and get acquainted beforehand. To establish familiarity, the caregiver could come in and take pictures and videos of what the patient will be seeing in the future. This allows time for them to adjust to their future surroundings and sets expectations for their visit.
8. Utilize Sensory-Friendly Designs
Have you ever walked into an overly lit room? Maybe the walls were a bright yellow color and the flooring was an uncomfortable feel of linoleum. Or perhaps a walk through the perfume and cologne section of a mall was too crowded with competing smells. That is the same feeling individuals with autism may experience on a daily basis. Unfortunately, there are still many doctor’s offices that are not designed to accommodate their heightened senses.
There are so many ways in which a physician can provide a comfortable environment for patients that will suit all types of populations. Maintaining a quieter atmosphere to not overstimulate the auditory senses. Natural, not harsh fluorescent light or possibly dimmable fixtures to accommodate visually sensitive patients is also a great inclusion.
Simple design considerations such as these make the experience much more tolerable and comforting instead of anxiety-inducing for individuals on the spectrum. Even the color schematic of the walls and decoration can contribute to the feel of the environment. Filter these resources under topics for more ‘Sensory-Friendly Design & Architecture’ ideas.
9. Acknowledge Safety Issues Unique to the Autistic Population
Talking about potential situations in the doctor’s office can prepare you for what could arise in the future. For example, some individuals with autism have a tendency to wander off. As a doctor, is this something you will address with the patient and the caregiver? Might you have suggestions to prevent such things from happening? Ask simple questions and offer some recommendations for particular milestones. This can include asking about swimming abilities to prevent potential risks of drowning in the future or other physical activities such as crossing a street. Thinking and planning in advance could prevent an array of circumstances that initially seem unlikely but could also very well happen.
Project Lifesaver is a free service that is spreading across the country in order to find individuals who have a tendency to wander off. Such a tool may aid on a family trip or outing. This service has a find-time of 30 minutes. It could be of use should a situation like this arise!
10. Share Resources from the Doctor to the Patient and Family
Doctors hold a great deal of knowledge and serve as important sources of information, but what about other specialists or resources? How can a physician further connections outside of their office? There is only so much a doctor can do within their domain, but what they can suggest to supplement a patient’s healthcare plays a role as well. Referrals to other specialists who consider the unique needs of the neurodiverse population or recommendations to informative outlets are equally important.
As healthcare professionals, ensure that your patients excel in their physical, mental and psychosocial well-being. It is not necessarily your specialization to carry out those aspects, but rather to facilitate it. A simple addition to your office could be informative pamphlet brochures listing the resources available to your patients.