A while ago I posted my letter to my dentist, which was my first attempt at letting a medical provider know that I’m Autistic and that I do, in fact, need specific accommodations and support during appointments.
It has helped at the dentist, I think. The staff seem to take more time with me (allowing me to process their words and formulate answers more effectively) and it wasn’t a huge deal to go in for a dental emergency while I was completely unable to speak a couple weeks ago.
So a few months ago I decided to try a similar strategy with my new doctor. I had not seen any doctors while not pregnant since maybe 2003, if not longer ago, but I’m getting older and I’m pretty sure my body isn’t going to start functioning any better over the next few years, so having a regular doctor in case anything happens seemed like a really good plan.
The biggest problem is that I hate seeing doctors. Hate.
I don’t think it’s anything personal against doctors at all. In fact, I now believe that most of my doctor issues have been related to my difficulties with verbal communication. So I wrote out a note with everything I could think of that might be helpful. In an effort to find a doctor who would provide the supports I need without talking down to me, I chose a doctor based on a personal recommendation from a colleague so I was able to mention that colleague’s name in my intro.
Initially I was a bit hesitant to write this letter. I don’t want to be dismissed because I’m Autistic and that’s always a risk when telling someone new, especially if it’s someone in authority, like a medical provider. However, my decision came down to the fact that I’ve been dismissed for so many years without telling anyone or knowing about being Autistic myself that I feel the need to be open and honest about it now that I know.
I never successfully navigated the medical system prior to telling anyone or knowing myself that I’m Autistic so I didn’t really have anything to lose by trying this out.
Here’s what I wrote with brief explanations below each section:
I saw Dr. M— as backup for my 4th full-term pregnancy/home birth in 20– and also know them personally as a colleague. Dr. M— highly recommended Dr. J— to me.
I’m Autistic and sometimes have trouble communicating verbally so I’ve written out my questions and concerns below. I’ve also attached a possibly helpful sheet of info from the Autism Women’s Network and highlighted the parts that are particularly relevant for my situation.
[Two omitted sentences detailing my years of experience as a student midwife and birthworker.]
Therefore, I am fairly familiar with medical terminology, but sometimes experience auditory processing issues and may need you to repeat yourself or might need a few moments before responding verbally. Please be as clear and direct as possible. I do best with information that’s provided in writing.
Part of my goal in the intro was to clearly state what would help me the most with the things that cause me difficulties and also let the doctor know what my strengths and knowledge based are. I want a doctor who is willing to collaborate with me, I want my doctor to listen and take my concerns seriously and they can’t really do that unless I have time to process and respond to their statements and questions about my concerns.
In this section I wrote down every single recent symptom I could possibly remember. I spent 2-3 weeks gathering this information.
All people who menstruate should at least have some basic info about recent menstruation dates to present to their doctor – and I say this as someone who works with menstruating people in healthcare on a regular basis. In my case, some of my symptoms were directly related to my menstrual pattern (or lack thereof) so it was particularly important for me to include this information in as detailed a manner as possible.
Tests I would like to discuss:
This section was the one where I put my research into action. Doctors don’t like it when you come in and demand tests, generally (in my experience), but I’m looking for a collaborative doctor-patient relationship so discussing seemed like a good wording and it went very well.
My doctor went right down my list of tests that I wanted to discuss. We talked about every single one and we ended up doing most of them, plus a couple that I hadn’t known about before talking to my doctor. I was completely comfortable with the discussion and satisfied with the outcome.
This was 100% the most productive doctor visit I have ever had in my life!
I was able to follow the discussion because it roughly followed the outline of my letter, with which I was very familiar. I felt able to and supported in asking for more time on a few occasions when I couldn’t quickly find any words with which to respond.
My confidence was much higher than it has ever been at a doctor visit because I didn’t have to keep so much information in my mind. I knew that everything important was written down so my mind was able to stay calmer and not worry about “what if” I forgot something important just to remember it as soon as the visit ended.
So I was far less anxious than usual throughout the visit as well.
Afterwards the office still called me with test results and I couldn’t at all understand what the person on the other end was saying so Counterpart had to be my personal assistant yet again and take care of the phone calls. But that’s really my only complaint and I believe it’s more of an office issue than an issue with my doctor.
So from now on, I’m planning to bring a printed out information sheet to every medical or dental appointment if possible. I’m done pretending to be able to manage without utilizing alternative forms of communication and extra processing time because I can’t. I can’t do it and it’s not doing anyone, especially me, any favors to keep pretending that I can.
This may be a helpful tool for folks who want or need to do this themselves and aren’t as comfortable with writing things out as I am.