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 Most physicians’ understanding of autism come from outdated textbooks that focus on identifying “signs of autism” in young patients, with no information about how to provide accessible service to autistic patients.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.

Wednesday, July 8, 2020

When Adaptation Looks Like Laziness

Emily Paige Ballou
twitter.com/epballou

Many times growing up, I found myself being called lazy for doing things a way that made sense to me. 

Of course I had no idea I was autistic for much of my childhood, and it was even longer before I first heard that executive functioning difficulties may be an inherent aspect of autism. Even then it wasn’t totally clear to me whether I was simply part of a minority that didn’t have significant executive functioning impairments, or whether I’d overcompensated to such an extent in that arena that it would be difficult for me to ever tell what the reality was. Only much later was I able to put together that some of the things for which I was being scolded were attempts on my part to cope with wonky executive functioning, and other related aspects of autism.

A somewhat common frustration that I hear from members of the autism parent community is that a child simply won’t do what they’re asked to do. Now, sometimes a kid may be avoiding a task they’re capable of just because it’s boring or they’d rather do something else. But this isn’t inherently a feature of autism and likely isn’t an issue for autism-specific intervention. Devising ways of avoiding chores is a time-honored tradition of childhood, after all.

Painting of Tom Sawyer talking another boy into painting the fence for him.
[image: Illustration of the character Tom Sawyer talking another
boy into painting the fence that Tom is supposed to paint.]

Secondly, however, I wonder whether there are sensory issues at play that make the task more unpleasant than it has to be and which can be mitigated. I realized only as an adult, for instance, that doing dishes was particularly difficult for me when I was wearing long sleeves because I didn’t like the feeling of my sleeves getting wet. Even if I pushed them up, water would run down my arms into them. Now I take off my sweater or flannel so I’m in short sleeves when I do dishes, and it’s a far more tolerable task.

But I also suspect that there are ways in which we may in fact be attempting to make a task manageable, or mitigate certain executive functioning issues in managing a task, that inadvertently make us look lazy or like we’re trying to avoid a problem entirely rather than approaching it indirectly.

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As I’ve grown to understand the workings of autism better, I’ve been able to see that many of the ways in which I was thought to be careless or avoiding work were actually ways in which I was trying to adapt to an obstacle I didn’t know how to explain, even if I was doing so unsuccessfully.

This is by no means meant to be an exhaustive list, but some of the categories these strategies can fall under include:
  • Minimizing number of transitions or motor planning demands
  • Taking processing time
  • Mitigating inertia or anxiety associated with transitions

1. Minimizing transitions or motor planning demands

This post really began when I realized all at once that most people probably don’t arrange their entire lives so as to substantially reduce motor planning demands.

For instance, we have a big wooden cutting board at home. My roommate puts it all the way away, in a cabinet with the pots and pans, after virtually every time she finishes using it.

I just leave it out as long as it’s reasonably clean, because I’m going to be using it again within a single digit number of hours. I wash it or rinse it if it gets messy, but basically I just leave it out, along with the other things that I am always using, like a knife for butter, and the jar of sugar I use in my coffee.

She also does dishes after every single meal, even if she didn’t really cook anything. I do them once a day, either before I go to bed or first thing in the morning, because why would I add four extra activity transitions into my day for nothing? Just to use the same dish I washed eight hours ago?

(Yes, even if I this means I have more dishes to wash when I do them, it involves fewer overall transitions to do them once than to do them three times in a day.)

Or, working on a one-woman show a few years ago, we mostly rehearsed at the actress’s own house, because she had the space and most of the furniture we needed, rather than renting rehearsal space and furniture. And every day after we rehearsed, her preference was for the room to be returned to its original arrangement, and then reset for rehearsal again the next morning. Since it was her house, this is something she had every right to, but my personal instinct would have been to leave things the way that I was going to need them, day after day, for a foreseeable number of consecutive days.

Why would I add steps into a process that only constituted a burden on my ability to do it?

I realized one day that if other people don’t have some kind of major motivation to absolutely minimize the number of motor transitions they have to make in a day, that if those extra actions didn’t cost them anything, then the fact of their being expected would make a lot more sense.

This is also one of the challenges I’m having with mask-wearing lately, aside from the obvious sensory issues. Putting on a mask doesn’t add just one step to the process of getting ready to leave my apartment, it adds about four. I have to tape a flexible nose piece into a cloth mask so it won’t fog up my glasses as badly, slip it on over my ears, actually adjust it over my nose, then adjust my glasses over it, and I have to do that in the correct order of putting on shoes, hat, mask, glasses, headphones, and washing my hands for a final time before I go out. I don’t always get it right on the first try. Then when I get back, I have to wash it out and put it out to dry. It takes that many extra steps, not just one, for every time I go outside.

2. Taking processing time

Sleep deprivation has been a near-constant issue for me since I was in high school, but once when I was working on a particularly difficult production, I learned that not having any mental downtime while awake could be as bad or worse in some ways than lack of sleep. While I was technically getting enough sleep, and our rehearsal hours themselves weren’t oppressive, between meetings and paperwork and technical issues, I was working on or thinking about the show almost every minute I was awake. I have almost never felt so mentally thrashed as I did by the time it was over.

Time spent not directly addressing a problem isn’t just time to do something more fun; it is often when our subconscious is continuing to work on the problem in a more indirect way.

I’m reminded of this scene from LOST between Jack and Sawyer, in which Sawyer explains that while, yes, he is reading a book, he’s also working out how he’s going to rescue the returned islanders from their time travel predicament. (I am still convinced that Sawyer is one of the best-written inadvertently autistic characters in television history.)

[video: Scene from Lost in which Sawyer tells off Jack, white dudes both.]

And we often emphasize this to non-autistic people learning new skills, that they need breaks from working on something difficult in addition to intensive practice, but with autistic kids, therapies intended to build skills often rely on relentless drilling.

This is also why it’s a problem to try to inject therapy into every part of child’s life, or turn everything good in their life into therapy. Autistic kids, like non-autistic kids, need all of their waking hours not to be work. Downtime doesn’t just allow for restoration, it’s when our brains turn short-term skill into deep knowledge.

3. Mitigating inertia and smoothing transitions

When I was a kid, I would beg to be allowed to do homework in front of the TV, and try to argue that I worked better with the TV on. I knew it wasn’t really true, but I didn’t know how to explain the way I was actually trying to help myself, which was by smoothing out the anxiety and inertia triggered by starting, stopping, and changing activities.

In general terms, “inertia” refers to the tendency in physics for objects in motion to stay in motion, and objects at rest to stay at rest. Energy is required to either stop an object in motion, or to set in motion an object at rest. 

In terms of autism, inertia means that it’s harder for autistic people than it is for other people to stop, start, and change activities—including things like thought processes, speech, and what we’re paying attention to, for reasons that are not well understood yet.

Even though I knew that having cartoons on made it harder to concentrate completely on math, being allowed to leave the TV on made it feel like less of a transition to get started on homework than turning the TV off, going somewhere else, getting my books out, and getting started on homework.

I still use this technique now when it comes to getting started on things that make me anxious or that I just don’t really want to spend time doing, like working on my taxes or folding laundry. Though I’m better than I used to be at telling what kinds of things I can do this way and what kinds of things actually require my full attention no matter how much I don’t want to give it. I’ve also heard more than one other guitar player report independently devising this as a trick, to put something fluffy on TV to watch while running scales or fingerings, just to turn those things into muscle memory through mindless repetition.

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What this doesn’t necessarily mean is that if you realize an autistic student is trying to make adaptations in these ways, that they are necessarily the best possible methods or should never be questioned. Trying to do your homework in front of the TV often isn’t actually great, for instance, and can lead to mistakes and decreased concentration. 

But once you understand what purpose the attempt at adaptation is serving, you may be able to use the same principle or make suggestions to find better solutions with fewer drawbacks. Maybe they need a different kind of media playing in the background to help with inertia, or a different kind of ritual to combat transition anxiety. Now I know, for instance, that making tea, lighting a candle, and turning music on is a ritual that can help me get started on work I’m not looking forward to having to do, or help me ease into looking at a problem I don’t know how to get started on or that makes me anxious to even think about. Some unpleasant things I really can do while watching TV without compromising the quality of my work! For others, instrumental music or a different ritual or telling myself “You only have to get this far tonight” and approaching it in small pieces to build a little momentum is better.