Saturday, July 11, 2020

Autistic with Cancer: Six Tips for Navigating the Medical System

Person with white-appearing skin, wearing a disposable exam gown,  from shoulders to hips, hands folded, waiting in a medical exam room.
Photo © wp paarz | Flickr / Creative Commons
[
image: Person with white-appearing skin, wearing a disposable exam gown,
from shoulders to hips, hands folded, waiting in a medical exam room.]

Anne Borden

I’m currently going through breast cancer treatment, and have encountered barriers to accessing accommodations while autistic. Based on my experience, I wrote this article to help autistics and other neurodivergent (ND) folks navigate the medical system. In this article I cover both sensory and communication issues, with strategies that have worked for me and other ND cancer patients I’ve talked to. I’ve also included some scripts. I hope it can be helpful in some way!



Background


There is very little accurate information available to help health providers understand and support autistic communication and sensory experiences. As a result, autistic patients are left to navigate a system that often misunderstands and mistreats us. It’s difficult. In fact, some autistics do not even seek medical care when it’s needed, due to such institutional barriers.

 

Through my advocacy work with Autistics for Autistics (A4A), I’ve been co-presenting at medical schools to help medical students with their future practice, so they can communicate well with AAC users and learn about things like auditory processing disabilities, and sensory differences. The students are always very interested in the presentations and line up afterwards with questions. 



Yet despite this interest from medical students, A4A too often has to push hard to convince some medical schools to “let” us present! And right now, there are only a few seminars of this type in the world! Most physicians’ understanding of autism come from outdated textbooks that focus on identifying “signs of autism” in young patients, with no information about how to provide accessible service to autistic patients. Their knowledge about things like AAC communication, selective mutism and sensory issues is typically nil. Until there’s better education, we will need to develop strategies and rely on our communities for some important parts of our health care. 



Tip 1: Find a community 


A big part of navigating cancer care is finding a support community. I found mine in an online breast cancer support group. Mine is not specific to autistic people (although someone should create one of those!). Some members of the support group are further ahead in their treatments and can give me good advice; other members are going through the same things I am now and can commiserate. It’s also very healing to be able to offer advice and support to people who are just beginning their treatments.

In looking for an online support group, try to find a local group so you can get local information. Also remember that smaller groups tend to work better—because with big groups people may not see or respond to your posts. 



Whether it’s online groups, family or friends, you need people who can listen and validate your reality right now. Focus on the supporters and prioritize them. Have boundaries with everyone else.


Tip 2: Have support at appointments


Right now because of Covid-19, you probably won’t be allowed to bring anyone to your appointments in person. But you can have a friend or family member listen through your phone! This way they can provide emotional support and take notes. If you have unreliable speech, they can also ask your questions as a go-between. 

It might feel awkward to say you’re going to use your phone, but it is your right and the hospital staff should understand that. 



Scripts for appointments: 
  • “My partner will be here by phone since they can’t be here in person.” 
  • “I need to have this information in writing: can we do that now?” 
  • “I may have questions afterwards, could you give me your email?”

Tip 3: Frame your access needs


Generally, medical providers respond best to very direct communication. For example, telling a nurse “I need extra time to sit because I’m light-headed” works better than saying “These procedures make me feel nervous” (which would probably just result in them telling you not to be nervous). 



If you have a therapist or general practitioner who can write up access needs on their letterhead, do that. Get the document to your cancer team in advance. If you are an AAC user, you can send information in advance on how they should communicate with you. And for those who choose not to disclose being autistic: remember you can still let them know your access needs whether they know your diagnosis or not.



Scripts: 
  • “I need a few extra minutes for questions at the next appointment.” 
  • “I need to rest a bit more before I stand up.” 
  • “I need to schedule appointments through email, instead of phone calls.”


  • [AAC] “Please allow time to type my answer before you ask the next question.” 

Tip 4: Know what to expect


Learn what to expect during surgery, chemo and radiation by talking to people who have been through it, such as online support groups. They’re a great source for the day-to-day information you need to feel grounded and take care of yourself, especially outside of the clinic. I’ve found that most people are glad to share their information and experiences, big and small.



I had questions about my chemo and radiation: the schedules, what it would all look like. But the oncologist was too busy to talk about that…and the booklets they gave me were just really vague. It is completely reasonable to want to know this kind of information, but it won’t necessarily be offered to you! In my case, I requested a phone meeting with a nurse before my session to talk about each step of the process. I would not have gotten the information without that request. 



Scripts: 
  • “I have more questions but I know you’re busy. Is there a time I can call back?” 
  • “I’d like to have someone walk me through what to expect on a chemo day. How can we arrange that?” 
  • “I have some questions about the medications at home. When can I meet with a  nurse?”



Tip 5: Identify your coping skills


Going through cancer treatment is like nothing else…but the great thing is you can actually use a lot of the standard coping tools that you already have! Think about your body, how it reacts to medical things and what steps you’ve taken to cope (for example, at the dentist). Imagine how you might feel during a certain procedure, and make a plan for when it happens. Line up all your favourite things, interests and daydreams; hold them close for comfort. Remember the times you’ve managed this kind of stress the best, and how you did it. 



Be kind to yourself when you struggle. Show yourself as much compassion as you would show to someone else in your position. Society puts a lot of emphasis on being a “cancer warrior” and “beating cancer.” In reality, your main goal is to make it through the day. Some days are easier and some are…not. But there is an end in sight.



Tip 6: Look ahead


The chemo room at my hospital has a giant brass bell near the doorway. People get to ring the bell on the last day of their chemotherapy. This ritual is so powerful to watch. It reminds me that I too am going to ring that bell, that this will come to an end. I hold on to that reminder in the moments that this all feels endless. I close my eyes and imagine swimming at the pool or other things I’m planning to do after my treatments. With Covid restrictions, of course, that list of things is even longer. And it’s harder to predict when we’ll get to do those things.



We are getting our cancer care in difficult times. The worst moments of it can feel endless…but they’re not. We make it through one, we make it through two, we make it through ten. We’re brave, all of us. There’s power in looking ahead, in dreaming ahead. Let’s take that power and use it. 



With so little information for providers or for patients about cancer care for neurodivergent people, we must rely our grassroots communities for support. My hope is that those of us going through cancer can connect at a later point and build a broader grassroots network of support, while continuing to educate the medical profession. Through these efforts, we can make the cancer care experience better for autistic and neurodivergent people in the future.