Autism and Going to the Doctor: How it feels from the inside

It’s hard to explain autism to people because it’s not just a list of traits. Definitions of those traits won’t help someone understand what it’s like to be autistic. This article is intended to help you understand the autistic experience of going to the doctor.

Of course, not every autistic person will have the same experiences, stressors, or sensory issues– but many autistic people will relate to this.

Going to the doctor: a walk in my shoes (brain)

It’s a crummy winter day of the muggy, overcast, sunless variety. The sloppy rain and sluggish fog sit like a brick in your throat and glue your clothes to your skin.

Relentless Analogizing

When autistic people face any kind of uncertainty coupled with anxiety or sensory overwhelm, relentless analogizing kicks in. Perhaps this abnormal weather brings to mind an existential crisis about the environment, or late stage capitalism, or the social climate at work.

The temperature, poor air quality, and unseasonable weather makes it easy to catastrophize.

What’s worse is that you are on your way to the sensory hell that is “Urgent Care.” For those outside the US, urgent care is a walk-in clinic that functions like an in-between step for matters that need more urgent attention than a routine doctor’s appointment but less urgent attention than the emergency room.

One can go to an urgent care for injuries, colds, rashes, employer-mandated drug tests, routine physicals for sports or employment, vaccines, and lots of miscellany. Society claims that since you look fine externally, you can wait for personalized care despite your body’s warning signs.

So, it’s like going to the McDonald’s of health care.

But back to the crummy day.

Now, are at a place in life where you need to go to an urgent care, where you might be treated quickly and have your needs met, or you might get someone who tells you to get more sunshine and sends you home with an exorbitant bill despite your insurance being listed on the website.

Going to urgent care is a gamble. The uncertainty is worse than it always being bad. At least when it’s always bad, you know what to expect. But when there’s enough hope, and the stakes are related to health, it’s a terrifying risk you like Russian roulette.

So, you have multiple tracks of anxiety happening at once.

  • You’re partially wet from the rain,
  • you’re cold,
  • you’re afraid of being dismissed or gaslighted by the doctor,
  • you’re scared of the results of whatever tests they do,
  • you’re terrified of the unpredictable bill that you probably can’t afford,
  • you’re dreading being touched by strangers who will examine you,
  • you’re worried the doctor will mistake your communication for being antagonistic or drug seeking,
  • you’re worried you will go mute and not be able to communicate at all,
  • and you’re worrying about a public meltdown.

That’s just a small portion of the concurrent anxiety tracks screaming in your head.

Those fears, however, are before you even sign in.

And if you have ADHD (AuDHD), too, then you’ll likely be anxious every time you go to any counter, for any reason, because if you remembered your wallet, you have no idea if everything that’s supposed to be in there is in there, and if it’s there— if it’s expired.

Because if you forgot something— and the likelihood of that is high— your anxiety is going to quadruple.

Nothing is ever simple.

After previous (failed) attempts at getting diagnosis and management of chronic illness and being confronted with massive lines of people who don’t care if you are physically disabled or disabled in general, you leave extra early.

Unfortunately for you, there is yet another line. This time, it’s half way down the block.

Still, you need help, so you get in line. In the rain. Now you add the anxiety of worrying about small talk, loud sounds, being bumped or crowded by ill people, and not being able to watch your back and front because people will see your anxious body language as suspicious.

This is especially true if you’re masc-presenting and Black or Brown. You can’t show emotions in public when you’re well over six feet tall and non-white.

The weather has you wet, the heaviness of the air makes it hard to breathe, and you begin to tear up as symptoms of your health concern get worse.

You live alone. You can’t get anyone to help you because you “look fine.” Your joints ache. You know you have chronic illnesses, but the doctors never understand autism and concurrent health problems.

Finally getting in

Once you’re in the office, you’re wet and miserable. You can’t breathe and don’t know if it’s panic or a meltdown or your illness. You answer the doctor’s questions too literally, or you can’t process the questions.

You aren’t sure what are symptoms of illness compared to what’s related to abject panic. You don’t know what’s new compared to what’s chronic.

A new track begins play as you contemplate the importance of how you communicate:

  • If you’re too vague, the doctor thinks you’re faking it,
  • If you name too many symptoms, the doctor thinks you’re a hypochondriac,
  • If you let your anxiety or discomfort show, the doctor thinks it’s antagonism,
  • If you list too many health issues, the doctor tells you to see a specialist you can’t afford,
  • If you are too specific or use language that’s too clinical, the doctor tells you to get off Google,
  • If you answer questions honestly, you’re not giving them the information you intended to give them,
  • If you don’t answer honestly, you may not get the answers you seek.

And the list goes on.

Whether or not you are religious, you begin to pray to any deity that might help you to just get out of there and back home with answers or a prescription that is not too expensive.

You really hope that you’ll not have to wait much longer, that the pharmacy has your medication and the lines aren’t too long, that the rain isn’t worse, that you can make it home before you fall apart.

Your pulse and blood pressure are too high. The doctor asks if you’re stressed.

Fluorescent lights buzz and crackle.

The wet seams of your socks debride your numb feet.

A young child screams. And screams.

Please don’t melt down, please don’t melt down, please don’t melt down…

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6 Responses

  1. Many thanks! We need more articles like this, documenting autistic experiences with accessing healthcare services.

    From my work with the healthcare sector with clinicians and nurses I am acutely aware of how little most healthcare professionals know about the needs of autistic people, even though otherwise they are well educated. Most of them go to great lengths to try to do the best possible thing within the many conflicting constraints under which they have to operate.

    A few weeks ago I came across this introductory course for GPs: https://elearning.ubccpd.ca/course/view.php?id=389. I took the time to take the course. So now I am educated in how to identify autistic people with pathologising language and refer them to pathologising diagnosticians for further “assistance”. The framing and the pathologising language is quite problematic, as it reinforces the perception of parents that their child is defective/disordered/deficient, and then makes them receptive to the advertisements from the ABA industry. I have offered to the developers of the course to assist with reframing the diagnostic criteria in the non-pathologising language used within the autistic community as part of autistic culture. Overall this reconfirms that education on the neurodiversity movement and autistic culture is urgently needed.

    1. Thank you for your hard work towards helping the autistic community, patient care and bedside manner are something that need to be heavily approved upon in the medical field especially in big U.S. cities so every person that challenges the current outdated system is a big step forward.

  2. One of my, shall we sarcastically say “favorite” doctor office experiences illustrates the effects of that corrosive blight on the planet which also called television: went in to office and TV up in one corner of waiting room had on some crime investigation show where the staff were detailing how a murder was done and the effects it had on the victim’s body. Seriously? That is appropriate? The behavior of the several people waiting had the appearance of discomfort and actively trying to ignore it. Sitting passively in front of that glowing box of garbage is not my style so I went and knocked on the receptionist’s sliding glass panel, described the program content & asked if that was appropriate to have in a waiting room where there were both children and anxious sick people.
    The blank stare of non-comprehension was remarkable, so here I am remarking upon it.
    Turned out tyhe office staff insulated behind their walls and sliding glass had no idea what was playing on the TV, they just mindlessly turned it on when they arrived to start the day and mindlessly turned it off when they left as in, “I am freed from the burdensome responsibility of thinking for myself as I robotically engage the electronic babysitter.” And the other waiting patients, who incidentally had no physical obstacle preventing them from going to the receptionist window, after all, they had been there to check in upon arrival, were too mindlessly passivized by that box of garbage to will to act upon the garbage it was spewing to their discomfort.

    1. Very important thing you touched on. Or they’ll leave the Doom and gloom of the News on ! They could at least have a timed schedule where they try to change to lighthearted things.

  3. Thank you so much for writing this. It is eye opening to read about your experience and thoughts. I had not idea. That clarifies behaviors of 3 family members. I have been frustrated with them for not getting medical care.

    1. Thank you so much for your kind words. Times have been tough and your words mean everything to me.

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