Accessible Health Care for Autistic Adults

For autistic adults, the barriers to accessing health care can be substantial. Not only are autistic adults more likely to live in poverty and less likely to have access to quality medical care, they may face practical barriers such as lack of transportation to appointments and difficulty in navigating a healthcare system that relies heavily on verbal communication.

Those of us who do have access to health care often discover that our health care providers, including those in the mental health field, are unfamiliar with the needs and challenges specific to autistic patients. While each autistic adult has a unique set of needs, there are some accommodations that could address common challenges faced by many adults on the spectrum.

The suggestions that follow are divided into two categories: improving access to care and improving the quality of care. The access section focuses on reducing communication barriers between health care providers and their autistic patients while creating richer sources of information for both parties. The quality section focuses on practices that providers can use to accommodate differences in communication and sensory processing that autistic patients experience.

Improving Access to Care

Provide text-based communication options. Many autistic people have difficulty using the telephone. Some of us have Central Auditory Processing Disorder, a condition that makes it difficult to process speech, especially over the phone. Some of us are nonspeaking or have difficulties with speaking fluently to strangers. And some of us just find the telephone to be a challenging means of communicating. Text-based options for making appointments, asking follow-up questions and obtaining test results can increase accessibility and improve the quality of interactions with health care providers.

Provide longer appointment slots. Many autistic adults need additional processing time, particularly when communicating with people they don’t know well. Some experience difficulties with speech when they feel rushed or pressured. Others use AAC, typing to communicate, which can be a slower process than spoken communication. By setting aside longer appointment blocks for those autistic adults who need a slower-paced visit, providers can improve communication and ensure that their autistic patient’s needs are being addressed.

Create databases and directories of autistic-friendly providers. Within the medical system, there is still a great deal of stigma and misinformation about autism and autistic adults. Some health care professionals are willing to work with autistic adults to make care more accessible while others are less accommodating to neurodivergent patients. Identifying providers across all specialties who provide accessible and sensory-considerate care and creating a clearinghouse of this information via autistic-run nonprofits could reduce the number of negative experiences that autistic adults have with accessing appropriate treatment. The Autism Women’s Network has an initiative to identify sensory-considerate women’s health providers that could serve as a model for grassroots, crowdsourced directories of other types of providers.

Use personalized accommodations reports. AASPIRE is developing an interactive online tool that creates a detailed, personalized list of accommodations applicable to health care situations. When the interactive tool goes live this fall, Autistic adults will be able to complete the interactive questionnaire, compiling information about their sensory sensitivities, communication preferences and other key topics, and then receive a personalized report to share with their doctors. The AASPIRE website also has a wealth of healthcare-related information and resources for autistic adults and providers who work with autistic individuals.

Improving the Quality of Care

Use visual aids as well as verbal explanations. Many of us are visual thinkers or prefer to have visuals to support verbal communication. By using visual aids such as models, photos, drawings, videos or other graphics, health care providers can ensure that their autistic patients have a more complete understanding of procedures, tests and other medical information.

Always speak to the autistic person directly. If an autistic patient attends an appointment with a caregiver, loved one or support person, this does not necessarily mean that the autistic patient is unable to communicate their needs or make decisions about their health care. Providers should presume competence by speaking directly to autistic patients and allowing them to decide what role their support person will play. Similarly, if an autistic person communicates by typing, health care providers should address them directly and wait for them to reply using their AAC device. Because a person is nonspeaking does not mean that they do not understand speech.

Ask specific, concrete questions. Open-ended or vague questions can be challenging for autistic individuals. Concrete questions such as “When did your pain begin?” and  “Is your pain constant or does it feel more or less painful at certain times of the day or night?” are more cognitively accessible than open-ended prompts like “Tell me about your pain.”

Recognize that autistic people have atypical sensory processing. Many autistic individuals perceive pain and other interoceptive (internal) sensations in atypical ways. This may lead to an autistic patient not feeling an expected degree of pain for a condition, feeling a great deal more pain than is typical, or not being able to accurately describe the type or amount of pain they are experiencing. Autistic people may also have difficulty with sensing other typical physical sensations such as elevated heart rate or abnormal body temperature. This can create an apparent lack of certain key symptoms, potentially resulting in misdiagnosis.

Communicate in advance before touching a patient. Tactile sensitivity is common in autistic individuals and can be a significant source of stress and discomfort. Health care providers can lessen the stress of patients with tactile sensitivities by explaining where and how they will touch a patient and working with patients to minimize the impact of procedures that might trigger tactile sensitivities. For example, firm touching is usually less likely to trigger a negative reaction than light touching. In some cases, a patient may be able to mitigate the impact of touch by stimming or assuming a comforting position on the exam table (such as curling up tightly in the fetal position). However, most autistic adults will only use coping strategies like this if they have a high level of trust with their health care provider and are actively invited to do so.

Be aware that some medications can affect autistic individuals in atypical ways. Anecdotally, many autistic adults report experiencing unusual side effects of medications–including the side effects listed as “less common” or “rare”. This lived experience is backed up by research on the effects of psychotropic drugs in autistic children (Santosh and Biard, 2001). It has also been observed by some clinicians that autistic people respond differently to drugs than typical people do or that autistic individuals may require lower than usual dosages to obtain the expected results. By communicating with patients regarding the expected effects of a new prescription and following up to identify any unexpected outcomes, doctors can optimize the effectiveness of medications for autistic individuals.

Provide sensory-considerate care. Sensory sensitivities can make medical visits uncomfortable or even unbearable. This discomfort can be lessened by asking autistic patients about sensory sensitivities that may be affected during their examination, procedures or tests. A cold speculum may be uncomfortable for a typical patient but feel unbearably painful to an autistic patient with a sensitivity to cold. The scent of a cream or medication may be inoffensive to most people but make an autistic patient nauseous or dizzy. Sensory sensitivities can be managed but they aren’t something that an autistic patient simply “get over” or ignore. It is important for health care providers to take sensitivities seriously and work with patients to minimize or mitigate any sensory challenges that may arise during their appointment.

Implementing accommodations that make health care more accessible to autistic patients can create a win-win situation by improving the effectiveness of care and enhancing quality of life for adults on the spectrum.

 

About the author, Cynthia Kim.

Accessible Health Care for Autistic Adults by Cynthia Kim

10 thoughts on “Accessible Health Care for Autistic Adults”

  1. With your permission, I would like to distribute this to Patient Services, Social Services, and my doctor at the hospital I use. I am an adult on the spectrum and my visits there have been unbearable. I have attempted to self-advocate, but have stumbled more than a few times. I also created a registration form that directs hospital personnel. I would like to share it with you. In fact, you have given me a good idea: I will update my form and make it something that anyone can use.

    1. Please do! I would love if people used this as a way to support their own self-advocacy. Please let me know more about your registration form – sounds useful!

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  3. I think it should be mentioned under always speak to the Autistic person directly, if an Autistic person shows up with parents or support, that it doesn’t mean the person with Autism is like a child. I have a lot of resentment over previous bad experience with healthcare providers treating me like a child upon hearing I have Autism. What’s worse than being talked to the way you’d speak to a 3 year old, are when healthcare providers push and push me to do a procedure I am not comfortable with. Or they insist I don’t need a local anesthetic type substance for something like removing a ingrown toenail. They keep pushing and pushing until I meltdown crying, and then treat me like a naughty child upset over nothing.

    I remember one time after having a procedure done to test my ear pressure I felt really dizzy afterwards and kept saying I want to go home. I kept begging to go home, being pressured to still do the other tests. I got desperate and lied I was going to puke only for the ear technician to hand me a dish to throw up in. My mom who was there has what I call 50’s Housewife Syndrome, where she feels she must please authority and people in general. It’s not like she doesn’t get I’m upset, it’s like the years of being raised in an environment where women just don’t say no makes it hard for her to stand up to authority. So we left and I was so full of adrenaline it made me feel like when I was trapped in high school.

    I do not understand how doctors, dentists don’t understand or seem to empathize with someone terrified. I know far too many Autistic people who have used horror films to find validation for the fear they feel, as well as a way to cognitively train themselves not to be as reactive. I say for most people the types of situations common in horror films such as helplessness remain in the realms of fiction. Far too many people with Autism know how it feels to be helpless. For too many of them going to the doctor feels like the abduction and alien human testing scene from the film Fire in the Sky, a scene that terrifies even the most hardcore horror fans. I suggest if you really want to know more about the scene reading it on Wikipedia’s plot of the film would be easier than seeing it.

    Many people with Autism have PTSD from bad medical treatment. No one should have to beg and plead for the assistance they need, yet for so many Autistic people their sensory sensitivities are ignored and they’re talked down to like children afraid of something that is no big deal. If we scream it’s ignored, this seems far fetched to me, but someone claimed when I discussed this issue with them that some doctors and dentists think people with Autism don’t feel pain. Or more commonly it’s “Autistic people scream for no reason all the time.” I had an experience where a dentist kept drilling my tooth and when I cried for my parents they tried holding me down, amazingly I remembered what I learned about blocking from a Karate Class and blocked their attempts to push me down. This likely wouldn’t have happened if. i were NT, my pain would be validated.

    In fact I could go on even further how the pain of Autistic people is invalidated to a point where it’s not if but when an Autistic person will develop an ability to dissociate to cope. This literally is the stuff of horror films, pushing people to a point of dissociation. That is normal for most people with Autism, that’s why the statement “They’re off in their own world.” regarding Autistic people grinds my gears. We’re not off in our own world happily playing with Unicorns and Puff the Magic Dragon, we’ve been overstimulated to a point where the only place we have to feel safe is in our own minds. People get it when it comes to war vets, they don’t when it comes to Autistic people. Where hearing a dentist’s drill can cause a flashback, like when someone from war hears fireworks and is back in the field. A interesting thing is at age 10 I related to the war prisoner in Metallica’s war video, because I knew how it felt to need to escape into my mind like that.

    No this doesn’t mean Autistic people are suffering horribly, quick quick, we must find a cure! A great deal of this could be easily avoided by understanding us. What hurts us might not hurt you, but none the less our pain still exists and is real. We could all have easier and less stressful lives by just believing others. Instead of assuming that Autistic person is being defiant like you would think about a 3 year old, consider they are experiencing real fear. They are begging you to not hurt them, while you’re telling them it’s no big deal. It is a big deal, first do no harm.

    1. Sure Wish Doctors in General would followthat do no harm thing. And yes it would seem PTSD , is common amongst us. Especially since those whom have authority in situations , Supposable the people we entrust with our safety, are the ones intiating PTSD upon us, or me ! at least. On occassion the more have self advocated the worse the abuse appears to have gotten., Feels sometimes a Lawyer would be helpful, but have tried that avenue, Resulting in more frustration. . Maybe i am different but deserve to be treated as a human .

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  6. Duke University Medical Center won’t do anything so my 30 year old autistic son can get into the neurology clinic and into a bare room. They’ve provided a back entrance into a back hall, but even that has traffic back and forth. The trip from parking into the clinic is quite a hike through alot of crowded halls and is probably hard for a number of neuro patients. They really don’t want autistics in their hospital. Since so many autistics have seizure disorders I’m not sure what we’re going to do. If they’re so afraid of him,, a bare room with a window for them to communicate through would be perfect..

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