For the first time in my life, I disclosed my diagnosis to a doctor. And for the first time in my life, they took my problems seriously and listened to me. This is very likely not a common experience for autistic people (at least, that I know of). To me, I felt like I was playing the lottery by going in there. And somehow they actually came around to listen to me. So I’d like to share my experience and the things doctors can do (very small, not time-consuming things) to give better respect and trust to their autistic patients.
I wrote and printed out a slightly edited version of my previous blog post before my new doctor appointment. The first page disclosed my autism diagnosis and explained alexithymia to the new doctor. On the second page, I wrote about my medical issues and my medical history over multiple pages, and boldened the really important parts.
I got called in, sat down in their office, and the doctor asked me why I was there (why I made the appointment). I somehow was able to speak alright at this point, probably because the waiting room wasn’t too loud and everyone was pretty quiet – people didn’t shuffle about, and there was the world cup on tv with no volume, which I was able to focus on.
So the doctor asked me why I was there, and I told them it was because I needed a new doctor as I didn’t have one anymore and it’d been a year, and then I tried to explain the main medical issue for why I was there. I still had my printed paper in my hand. They asked if I had seen a doctor about it before, which is when I turned to the 2nd page that described the medical history and gave it to them (didn’t have the disclosed paragraph on it, that was on the first page). Their immediate response was “what is this?” as is quite a common response of doctors when they get a piece of paper for some reason (I honestly don’t know why). This is where my memory gets a little fuzzy on the details. Essentially I said “I’m not very good with words so that’s why I have this” and pointed to it. They then flipped to the first page and must’ve read the first one or two sentences, and then flipped back to the 2nd page and looked at it.
They (politely, not condescendingly) explained that you cannot simply just get referrals, and that people need to do diagnostic tests. I completely agreed and again said “I know I’m just not very good with words” and kind of stopped speaking. My anxiety was getting worse although I didn’t realize it at the time. Then they finally started reading the relevant medical history and each time they read a sentence, would ask me a followup question (something I was unfortunately expecting). I tried to answer the first one and got a bit choked up. Same with the second question, and added “that’s why I brought the paper.” By the third question, “Why didn’t the doctor do X?” I started tearing up, looking at the ground, and didn’t speak. They got out of their office chair and walked up to me slightly and quietly said “This is a safe space here. You’re okay.”
I really, really appreciated this one gesture. It made me tear up more in relief, because literally no one has ever said that to me. They didn’t ask me why I was crying, or why, or how I was feeling. They just said “You are safe here.” I was suddenly less worried about expectations to speak verbally or act a certain way.
I also really appreciated what they did afterwards. Then they decided to read the entire paragraph aloud, which nearly answered all of the questions they had in the first place (and if they had read the first page fully they would’ve known this, although to be fair I didn’t show the first page to them originally). They didn’t just ignore me and read, but responded to what I had written after reading it out loud each time. They didn’t ask anymore questions directly to me (didn’t look at me), but rather looked at the paper and kept reading when they asked, which then very often answered the question. After this conversation, they asked if they could have a copy of it. I was so happy they asked, I said “You can keep the whole thing! That’s why I wrote it down!”
These small actions add up to real accommodations.
Ironically they did end up responding to and agreeing with most of what I had written (I do research my problems a ton).
Things they did that were helpful:
- They presumed competence, even when I couldn’t talk.
- They told me why they were referring me and what I needed to do to make an appointment
- They told me exactly what diagnostic test I was getting and why, and explained why I needed other tests (I need bloodwork for X reason because it might implicate Y during the imaging test).
- They told me how to schedule my next appointment in the office (who to talk to, showed me who they were) and when I should schedule it to get my results back.
Things they did not do that were helpful:
- They did not try to get me to speak when I was looking at the floor and starting to tear up.
- They did not get annoyed or impatient that I wasn’t responding “correctly” or quickly.
- They did not talk down to me or infantilize me (they talked in a normal tone, like I was an adult just like anyone else).
- They did not assume that I couldn’t understand what they were saying, just because I couldn’t talk.
- They did not tell me my problems weren’t a big deal, and did not chastise me for decisions I made in my previous medical history (didn’t say “you should’ve done X” or “why didn’t you do Y?”).
- They did not make vigorous eye contact to see if I would look away, or try to see how I react to certain social things like tone of voice.
- They did not refuse to treat me.
- They did not refuse to read the paper explaining my circumstances.
At the end of the appointment, they looked at me (not directly) and said “We’re going to figure this thing out.” That is the first time I have ever heard someone say that to me, let alone believe it.
I know this is not something that happens often (and I do think part of the positive response was due to me saying I am a neuroscience grad student as for some reason that gives you a bit more respect from doctors – I really don’t see why it should), and that many interactions may not play out like this for other people. But I am very happy that this doctor allowed me to communicate the way I needed to. If I hadn’t done this, I likely would not have gotten the referrals I needed to find my medical issue and get treated for it. I likely wouldn’t have said I had a problem at all verbally. It’s important to let doctors know that they don’t have to do much to accommodate us and treat us with respect – and it may greatly impact an autistic’s life. It did for me.