What I Need as an Autistic Woman Navigating the Health Care System
There are a multitude of reasons why the health care system is a difficult place to be stuck in. Financially, emotionally, physically, mentally, spiritually— it has all the challenges. Autistically, it is also a hard place to navigate.
Complicated conversations and unpleasant procedures are hard for anyone. What I found as I looked around me throughout my life at family and friends (and strangers on the internet) was that other people seemed to be able to handle these unpleasantries in a different way. Throughout my whole life I have not been able to complete a medical appointment “successfully.” After many years of trying to punish myself for this, I started to ask whether it could be related to my autism. The book “Spectrum Women” has a whole section on autistic women and medical situations. This was the first time I saw that I wasn’t alone in my experiences, and that it was the system that didn’t know how to treat me properly, not me who was “too weak” for the system.
Things I need in medical settings as an autistic woman:
1. Another person.
For years I have tried to “be an adult” and “be brave” and go to appointments alone. That’s what adults need to do I thought. Turns out no matter how many times I try, the anxiety and over stimulation of the situation overpowers me. Even when I write things down, I am unable to communicate what I need to my provider. This is obviously very frustrating and it also makes the appointment unproductive. On top of that, when my anxiety renders me unable to speak, I also cannot ask questions or ask for explanations or advocate for myself. It won’t be possible to have a caring person with me all the time, I know that. But it would be nice if it was possible, because this is something I need.
2. Direct directions.
I know it seems like a social code what to do in doctors appointments, but more and more often I find myself standing in a changing room or office at a total loss of what to do next or standing at the reception desk not knowing if I’m going to be given paperwork or at what point I should sit down. I need direct instructions that let me know what each step is going to be. You are going to sit down and fill this out, bring it back and then sit back down etc. This may seem simple and silly to some, but I feel extreme stress when I don’t know what to do with myself.
3. I need step-by-step explanations.
I need them to explain what I need to do each step of the way as well as what they are going to do to me. For example, “you will go into this room here (shows me the actual room so I’m not wandering around like a clueless chicken) and you will change into this, put it on this way. Then you will put your purse on the bench and walk this way to this room.”
This is how detailed I need them to be. “Then you will put your purse on the chair and sit on the end of the table like this. You will sit here for x amount of minutes waiting for the nurse/doctor.” When the provider enters I want them to then explain what is going to happen before it happens. I hate procedures and I really really hate surprises. Of course before each step I would also love it if they asked for consent, but that’s a lot to ask when you sign a consent form at the start. It would just be a nice bonus.
4. Clear and honest instructions beforehand.
Many websites write about the different appointment types in their drop down menus, describing what will happen and what you need to do to prepare for certain tests. I have found these to be highly inaccurate and that creates a huge problem for me once I get to the appointment and it is not the way I expected. I have yet to find a website or a medical secretary who can accurately tell me what is going to happen at my appointment and how much time it will take. I know you can never know for sure but even an approximation would be appreciated. I cannot explain how much the preparation helps me, but when the preparation instructions do not match the reality it actually adds stress.
5. A picture of the office and of the providers.
This comes under the umbrella of being able to feel calm and prepared. Some websites have this, but many are not updated or do not provide clear images. It would make me feel calmer if I knew the layout of the waiting room beforehand and if I could recognize the names and faces of the people I was about to interact with.
6. Time to breathe.
The system is pressured. Doctors and nurses are overworked and in a big hurry. Despite this, I really need just short moments to breathe. They are throwing information at you at an unnatural speed (possibly life-changing information) and I’m already in the middle of an anxiety attack beforehand. I need whoever is speaking to me or treating me to just slow down and/or check in with me during the appointment. After a few sentences perhaps they could say “are you OK with that information? Should I repeat it, do you need it written down? Did that upset you? Do you need a moment?” I know this seems a little unrealistic given the state of the system right now, but it would help me a lot. I leave most of my appointments in tears or in meltdown, probably not having taken in half of the information I was given due to the way it was told to me and my state of mind.
This is something everyone needs when doing something scary. I need a calm person (either my person or a nurse or the doctor themselves) to reassure me that things are going how they are meant to or that I am doing well. If I need to do something differently such as breathe deeply or move in a certain direction, telling me this in a reassuring and non-judgmental voice would be helpful. Just letting me know that I am “safe” in some way in a situation that I find terrifying. The worst thing I find is a procedure with total silence (apart from my sobs) where they go about their job as if I am a piece of meat and not a human.
I need my providers to trust me. It is very common for anyone with a mental illness and/or neurological or developmental condition to not be trusted by their doctors. As if we still don’t understand our own bodies as well as they do. Of course, we actually understand and know ourselves better than they ever will. Often our complaints are dismissed or symptoms not believed because we are not considered to know what’s really going on. Often physical symptoms are dismissed as just part of our anxiety. I have even been told “autistic people are just like that. You will have to live with it.” I need to be heard whether it be through my own voice, my advocate, or my writing I bring to them. When I feel that they trust me, I can begin to trust them.
There are lots of amazing, understanding health care providers out there. I am not trying to minimize the work that they do and the effort they put in. There are others who are well-meaning but untrained in the needs of different groups and the nuances of individuals depending on their illness, mental state, past experiences or neurological conditions. The steps to change this are relatively small, but need big advocacy.
Getty image by Namthip Muanthongthae