Autistics get sick, too!

01 Dec 2011
by AutisticSpeaks

I firmly believe that doctors are people. That’s right– human, through and through. This means that they are fallible, for one thing. For many years, I’ve functioned under the premise that doctors not only knew everything, but that they were in charge of me. I’m just learning that these things aren’t true…

I had an appointment today, and it was obvious that this doctor was not autism-friendly. He made one mistake after another. And I got to thinking… maybe he doesn’t know much about autism. But then, really, the ways in which a doctor should interact with a person with autism would be helpful for many patients of all backgrounds and neurologies, you know? It’s like, when you’re teaching a class with 20 typical students and one with autism, the adjustments you make for the one often benefit the 20, too.

With that, I give you the following tips for doctors. I’m not convinced many, if any, if them will step out of Doctor World long enough to read from me, “just” a patient… but if I don’t type, I’ll scream, and so….

1. It doesn’t matter how many times you ask me if something hurts… it’s still going to take me some time to figure out if it hurts, where it hurts, how much, and what of that I need to report back to you. So if you push and say, “Does it hurt?” don’t assume that my flat face means I’m fine. I have a different pain threshold than typical people do. And, if you keep asking me, over and over, it won’t make me answer any faster; in fact, it will take me longer, because now I’m processing not only my pain but also your words. Push once. Ask once. Wait. Even then, you may or may not be getting an accurate answer. In fact, if I answer immediately (because I know that’s what you want) you may well be getting a random guess from me. Does it hurt? A little. That’s standard. It may hurt a ton, if you give me a few seconds to process, or it may not hurt at all. Try asking me to point to where it hurts on a picture, and then ask me to point from one to five (or whatever scale the person prefers… I am helpless with 1-10, but I do great with 1-5!).

2. With that in mind, people with autism often have unique styles of communication. I can answer most simple questions, but if you give me a lot of information or if you ask me something that requires a complex answer, I may need to either think for a while, or type out my answer. My experience today was that the doctor kept asking me a question, waiting 0.03948 seconds, then continuing to talk… over me. I got frustrated. Give people time to think and answer you in the way they communicate best.

3. Speaking of frustration, if you frustrate me enough, I will scream at you. I know; you’re a doctor. Trust me, I know. That doesn’t mean that you’re immune to my screaming! I’ve been pushed around, belittled, and talked over for almost 24 years… and so, sometimes, one more time is just too much! Try to be aware of my frustration level and ask me if I need a break. Then, be prepared to give me a few minutes to myself, during which talking to me or expecting me to talk will probably be met with more screaming. I don’t need a long time. I know you’re busy, I know. But please, two minutes of silence will result in much more effective communication for the rest of the appointment.

4. People with autism are very literal. For one thing, if you ask me how much I weigh or how much I eat in a day, I have absolutely no problem being completely honest with you. And so, please don’t say something like, “You must be eating 5000 calories a day to be that heavy! Think of everything you eat and cut it in half!” Because, see, when I was 13, I was eating about 1200 calories a day… and when you tell me half, I take you very literally and cut my intake in half… and that’s the beginning of how I ended up with an eating disorder for ten years. I know I’m overweight… but I get good exercise, and, day to day, eat pretty well. Sure, I can starve myself and lose weight, but that’ll just land me back in the hospital… so, I’ll keep my weight and continue to do what I’m doing.

5. Chances are that your office is sheer sensory hell for me. The lights, mostly, are the problem. I wear sunglasses in doctors’ offices… big, black ones. Even then, I will shake, shiver, and get a little cranky due to those awful fluorescent lights. Please don’t mind if I turn one light off, if you have a window. It might be the only way I can tolerate your office. I’m also very super sensitive to touch, so I might jump or fuss a bit if you try to touch me. If you touch me without warning and I’m not looking, you might even get a scream or a swat from me. Again, I’m not trying to be disrespectful! Try saying, “I’m going to listen to your heart in 3…2…1..now.” And with that, you’ll avoid getting swatted and I’ll avoid the embarrassment of swatting at you!

6. People with autism may have language processing issues, especially when under sensory and emotional overload (because the stress from a doctor’s appointment is huge and can affect what we recall). Try writing down anything I need to remember from the appointment. My physical therapist writes me a list of the exercises I need to do (at my request), and I post it on the wall so that I can remember to do them. He thought it was funny to have PT exercises on my wall; I said, “Oh, you have no idea, the things that are up there!” We have feelings scales, morning routine, evening routine… and now PT. When I come in for my appointment, if you ask me to remember the medications I’m taking (even if you’re just reading them out loud and asking me to say yes or no)… I’m not so great at that. I need to actually see the list and compare it to my mental list, and then I can tell you. Do as much on paper as you possibly can, and I will be much more compliant to your orders.

7. I almost always bring someone with me to the appointment. It might be my mom, someone from church, or my mom’s best friend. This is because my verbal memory is poor and my communication skills, at least in your world, are lacking, and so I need someone to help me remember and translate. This person is there to help us understand each other… so while the majority of your communication should be directed at me, the patient, don’t forget to check in with whomever is with me every now and then. Make sure I remembered everything, and such.

8. If something goes wrong between appointments, how can I contact you? Keep in mind that many people with autism do very, very poorly on the phone. Not only can I never seem to understand the medical assistants over the phone, but they never seem to be able to understand me. Is there any other way to contact you, such as via email?

9. I don’t want to step on any toes here, but… I deserve respect. Please treat me like the highly intelligent young woman I am, and one who knows more than her share about medicine. I usually know when something is wrong with my body. I was having behavioral issues and pain in my face for quite some time, and everyone, including my PCP, kept telling me that it was “just the arthritis in your jaw.” I had a middle ear infection, and it was nasty; by the time I went to urgent care, I’d had it for a few weeks. I get very upset when people, most especially doctors, talk down to me or talk like I’m not there. If I come in saying that I’ve been sleeping for 20 hours a day, don’t tell me, “That’s normal,” when I’ve been falling asleep standing up, in public, etc! Please, listen to me if I say something doesn’t feel right.

10. It’s no fun for me to go to the doctor, so please keep in mind that being a little extra nice can go a very, very long way! I respond very well to kindness… don’t we all?