Barriers to Effective Medical Care for Autistic Adults
Why is it hard to get good medical care if you're on the autism spectrum?
Posted Jun 30, 2014
Once a week, I host a Twitter chat on issues relevant to living as an autistic adult. One evening, I got a tweet from a participant, who suggested a topic. “Could we discuss Doctor visits and how to make them more comfortable?” she asked. It was a topic I’d been meaning to cover for some months, after a hospital visit that brought me up against some of the invisible barriers those of us on the spectrum can face in medical care. The discussion that ensued was a lively one, one which showed that I was not alone in my concerns.
Honestly, until my visit to the hospital, I can say that I hadn’t thought through the ramifications of how my differences might cause problems in a medical scenario...at least not to this extent. I touched on it in my post on pain processing and body awareness, but, as with just about everything in my life, I find myself re-examining everything through the lens of autism.
Life, for me, is an ongoing journey of self-awareness. As I have new experiences, or look back at old ones, I continue to discover new facets to my experience of autism. This facet is one that is disturbing, especially when you consider the fact that some autistic adults are denied care specifically because they are autistic.
As I’ve written before, I’m a person who’s spent much of my life “passing,” for better or for worse. Now that I’ve become more open about my moments of anxiety and paralysis, I continue to get feedback from people that they wouldn’t know if I hadn’t mentioned it. According to them, it seems, that I’ve learned to hide my natural fear and stress reactions very well.
This, of course, is a problem in the case of a serious medical incident. When I think of this, I think about a scenario that happened a year or so ago. I had fallen in the parking lot of the local library, wrenching my left ankle horribly. This happens to me fairly frequently, after a close encounter with a car in my teens caused some serious damage to bones of my lower left leg.
Although the leg looks fine on the outside, and works well enough (with some aches and pains), the broken bones are set in such a way that they affect the overall stability of my ankle joint. Luckily for me, I have also been always gifted with above average physical flexibility, so I’m not injured as often or as severely as one might expect. Nonetheless, sprains are particularly common for me, common enough that I often don’t go to the doctor.
I had spent a few days limping around the office in tightly-laced riding boots for support, when a co-worker who knows me well (and knows that I’m on the spectrum) asked me if I’d had it checked out. She’s worked with me long enough to know that I have a history of missing serious injury or discovering it later than is typical. When I said I hadn’t been to the doctor, she pulled me aside and had a little talk with me. “You know better than that!” she said. “You need to get this checked out.” So I did.
On the way home from work, I stopped by the local urgent care office — probably my first mistake. Here, I’d be dealing with people who didn’t know me well. That’s usually a problem. It was. The lady I got was rude and brusque almost from the start, treating me as someone who was wasting her time.
I wondered what was going on, and began questioning myself. Did I look like a faker or someone who wasn’t in pain? If that was case, what was I to do about it? It seemed ridiculous to have to “put on a show” to let someone know I was in pain, but I found myself seriously wondering if this was something I’d have to do.
This treatment lasted until she returned to the room after having looked at the x-rays. Suddenly, she was all compassion. Fortunately, nothing in my ankle was broken — it was, as usual, “just a sprain.” I tried to fathom the change in her attitude. If anything, I would have thought, an x-ray that showed no broken bones would have worsened her feeling of my wasting her time, not bettered it.
Taken in isolation, it’s easy to dismiss this incident, but it’s happened to me many times and many different ways. During the hospital visit I mentioned earlier, the same type of dynamic came into play. My husband and I were out of town when I began to have chest pains.
Unsure of what to do, I called my insurance’s nurse line, where they advised me based on my symptoms to get to the hospital right away. So I went to the ER. Again, dealing with people who didn’t know me well, at all. The first doctor I had in the ER was wonderful, but when they checked me in for observation, it was another story.
Naturally, I was scared. Especially so because I spent most of my high school years watching my mother’s health slowly decline due to heart failure, culminating in open heart surgery my senior year. I was in a strange hospital, in another state, under observation for the same type of thing that had nearly killed my mother. I couldn’t help but worry — was I following in her footsteps?
Of course, this intensity of emotion was a problem, as emotional stress seems to worsen some of my challenges, especially speech. It was late in the evening before I got up to the hospital room, and since the attack had happened while I was eating lunch, I was starving — yet they had nothing to offer me to eat. This meant that my stress level was only getting worse.
So, of course, this was the time that the doctor came to evaluate me. He began asking me questions and I found myself deeply self-conscious. I’ve learned through other experiences, that the words you choose in such situations make a huge difference between how seriously you’re taken. Not adequately explaining what’s going on is dangerous, but so is being too precise...and if I let my social veneer fall, and my more instinctive “professory” tone comes out, well, that never goes well.
I was struggling for, as one participant in my Twitter chat put it, “patient language.” That right social balance of words that brands you in their eyes as “normal.” The “normal” person with an intelligence profile they will deem as reliable. The “normal” person who doesn’t feel the compulsion to call things by their right “scientific” names. The “normal” person who is sufficiently educated in these things, but still clearly a layperson. The “normal” person who doesn’t threaten the inherent superiority in the doctor patient relationship.
It’s a social nightmare, the achievement of which is only made more difficult under stress. Anxiety was already making it more difficult for me to speak and worse still, it was wreaking havoc with my sensory issues – which, in turn, makes body awareness very difficult. This was, of course, the very time the exam turned physical. Suddenly, this strange doctor is poking me. And asking me how it felt.
I knew I couldn’t answer with the first words that popped into my mind — I don’t know. How could I possibly get him to take my symptoms seriously if I didn’t know what they were? By conventional thinking, if you’re in serious trouble, you’d have no doubt about your pain. Maybe you’d even be screaming about it. But that’s not the way it works for me. As with many people on the spectrum, my interoception is often a bit off.
Years ago when was hit by the car, I insisted all the way to the hospital that I didn’t feel pain. The EMT refused to believe me, and decided I was just being brave for their benefit. She clearly felt that it would be impossible for me to have the level of injury I had and not be in pain. I couldn’t convince her otherwise. Another time, I walked for a week on a broken foot. I was prompted to go to the doctor not by pain, but because of the alarming dark purple pool of color that formed across the top of my foot. In another instance, my appendix nearly burst before I realized anything was wrong.
A case of bronchitis in high school progressed to the point my doctor told me I was breathing with only one lung. I never even coughed. Again, it wasn’t physical sensation that drove my concern, but the fact that I was sleeping 13 hours a day. I’ve had a lifetime of experiences that have taught me that the internal senses that are meant to let me know of injury or illness just don’t work quite the same as everyone else’s.
But, this doctor didn’t know any of that, and I wasn’t in a position to tell him. In fact, my experience has been that it’s often futile to try. It’s something most don’t easily believe, unless they’ve some experience with it. Trying to explain it to an unfamiliar medical provider rarely results in better care, but often results them viewing you with less credibility.
Occasionally, if I say I “have a high pain threshold” that will be accepted, but it actually isn’t quite that simple. What happens if I say that, and have one of my hypersensitive moments? Then what? Do I look like I’m lying?
Under the circumstances, I was afraid to take the chance of trying to explain this. I didn’t have the words or the composure to do so, and the doctor was already beginning to look at me strangely. So, now, I was trying to do calculus on the fly. Trying to “translate” my own perception of pain to what I believed it would be in someone without my issues.
Of course, this is problematic because I’ve never actually felt what typical pain perception feels like, and my own is highly variable. Based on my experience, I assumed I was in hyposensitive mode, but could I be sure?
By the time we reached the end of the exam, I was a nervous wreck, and the doctor’s manner toward me had shifted noticeably. After he left, I asked my husband for his read on the situation. Why was the doctor reacting to me the way he was?
“Well,” he said, “the way you kept stopping to formulate your responses might have looked to someone else as suspicious.” He himself was used to it, and knew that there was nothing sinister beneath it. But, “To them it might look like you're making up answers."
His words made sense, and the way I treated during my stay seemed to confirm it. Several of the nurses were wonderful, but the doctor continued to treat me distrustfully and with a lack of respect. On my last day there, I overheard him speaking to the new nurse on duty, whom I’d not yet encountered. He was coaching her on how to deal with me, in very insulting terms.
As a result, she came into my room loaded for bear. She was rude, brusque, and seemed to expect “trouble.” I had given no-one any reason to expect this of me, but the doctor had decided that I was unstable, and likely to give her trouble over my discharge. As insulted as I was, I was very careful in how I responded to her.
Because of one doctor’s response to my atypical social cues.
In the intervening months, I’ve been embarrassed enough by it, that I’ve even been afraid to write about it here. What if my readers think what he thought? But one Twitter request changed all that. I realized I wasn’t the only one who’d had similar experiences. It’s unfortunately, too common.
That’s a crime.
RESOURCES AND RELATED READING
“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.”
“Once at the doctor, self-advocates reported a variety of different experiences. Many self advocates participating in groups indicated that they had strong positive relationships with a longtime clinician who took the time to explain their medical needs to them in an accessible fashion. Unfortunately, many also reported being disrespected, confused or having their needs ignored by their doctor. ”
Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) — Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership
"Clinicians should be both aware of the potential healthcare disparities experienced by autistic adults— including adults such as those in our sample with overall high educational attainment and access to the Internet— and open to accommodations and strategies that may improve healthcare. Some examples of accommodations and strategies that have been useful to our team of patients and providers include: offering patients an alternative to an over-stimulating waiting room; allowing patients to communicate in their preferred mode (e.g., writing or typing); using precise, specific language; allowing extra time for patients to process information; providing very concrete, step-by-step written instructions for how to obtain necessary prescriptions, tests, or referrals; and clarifying the role of supporters."
For more, see http://www.autismandhealth.org/
Notes On Crazy — Atypical Pain Expression
“This morning I was in respiratory distress. No, it wasn’t life threatening. I am fine now. As much as I tell myself that being fine now means that obviously I was fine then too, the reality is that is simply not true.
But I couldn’t tell. I couldn’t tell that I couldn’t breathe.
I couldn’t tell that I couldn’t breathe.
I could perceive – with forced attention – some tingling in my extremities. With as much concentration as I could muster, I then noticed that I was a bit light-headed, and then that I couldn’t tell if the person on the phone next to me was speaking English or not. Finally I noticed a sharper than normal (for me) reaction to a loud noise.
I concluded that I was having trouble breathing. I couldn’t tell.”
“Interoceptive feedback is important for keeping our bodies in good working condition. Think of them as the body’s dashboard. Are we low on fuel? Running too hot? Has it been too long since some critical service was performed or is a warning light flashing? Interoceptive sensations provide the feedback necessary for troubleshooting and correcting imbalances in the body.
Emotions often arise from our interoceptive sensations, too. When someone asks how you feel, you probably subconsciously check-in with your body, and realizing that you’re tired, hungry, hot, or achy, you reply, ‘not too great.’ Or conversely, if your interoceptive sensations are in balance, you might report feeling happy or at least content.
Obviously not all emotions are tied to interoception, but it’s hard to be happy when you’re in pain or content when you’re itchy. For many people being hungry or tired is a direct route to being cranky and short-tempered. Those of us who are alexithymic experience this even more strongly, often struggling to identify the difference between emotions and physical sensations. I can’t explain how my body confuses ‘upset’ with ‘cold,’ but sometimes it does. Now I know that if I’m feeling cold when no one else around me is, I need to check in with my emotions. And put on a hoodie.”