I’ve never heard anyone talk about what it’s like to do breast cancer while autistic.
That’s not surprising. One of the tough things about being autistic in our society is that we tend to get talked over by neurotypical “experts” and caregivers. Only in the last few years have people begun realizing that our lived experience makes us experts in ways training and observation alone cannot. We have more of a voice than we used to, thanks in large part to the internet and social media, but it’s still often a struggle to be heard.
Since today is the first day of Autism Acceptance Month and I have this platform to do it on, I want to talk a bit about what it was like to go through a breast cancer journey as someone on the spectrum. Any time I talk about autism, I have to start by explaining that, like most autistic self-advocates, I prefer identity-first language to person-first. That means I say that I’m autistic rather than that I “have” autism and I’m an autistic person rather than a person with autism. I’ll also sometimes use the phrases “on the spectrum” or “neurospicy” just to mix things up.
Now let me make clear that every neurodivergent person has the right to self-identify in the way that works for them. I understand the idea behind person-first language; it’s just that, for me, being autistic is a fundamental part of who I am and how I relate to the world. It doesn’t exist separate from me any more than my ethnicity or my gender or any other facet of my identity. It’s part of who I am, both when it’s acting as a superpower and when it – and society’s reaction to it – are disabling. In my case, it does both in different circumstances. Sometimes it makes life easier and sometimes it makes life harder, but it’s always part of me.
I’ve grown to consider being a cancer survivor in much the same way: it’s given me some terrific insights and benefits, but Lord it’s hard sometimes. Understand that I’m not saying autism and cancer are the same thing. They 100% are not. Cancer, in-and-of-itself, is not helpful in any way. The world would definitely be better without it. The same isn’t true of autism. Like autism, though, survivorship changes how you experience and interact with the world – and how other people view you, experience you, and interact with you. Not everyone sees autism as an intrinsic or vital part of their identity, just as not everyone who’s had breast cancer sees survivorship as central to who they are. I do. So that’s where I’m coming from.
It’s also important to understand that I can only speak to my personal experience. There’s an old saying that “if you know one person on the spectrum, you know one person on the spectrum.” While we do have a lot of common overlapping experiences and traits, some of us struggle with things others don’t and vice versa. But also – and this is partly why I see it as so central to my personal identity – it can vary based on everything from gender to age to personal and physical history. So what I’m talking about here is how autism impacted my experience and if you are or know someone who is both autistic and going through breast cancer, some or all of this might resonate.
Fact is, I could write a whole book about how my autism and my cancer experience interacted. For today, I’m going to focus on the sensory stuff. I’m lucky in that I don’t have a ton of everyday sensory issues. There are definitely fabrics I can’t stand to touch, and loud noises and bright lights, particularly fluorescents, can be a problem. I tend to pick up on electronic humming and that can really distract me. Like many – perhaps most – people on the spectrum, I’m the opposite of the stereotype when it comes to emotion; I don’t lack empathy and actually tend to be hyper-empathetic in a very tactile way. Neurotypicals with high empathy talk about feeling other people’s emotions in their own emotions. I feel it on my skin, especially my scalp, in the back of my throat, in my ear canals. It’s a bit like electricity for me. It happens even if someone isn’t touching me, but if they are, it’s usually even more intense. As a result, being touched unexpectedly is not my favorite and too much casual touch, even when I’m expecting it, can get overwhelming very quickly.
All of this is fairly common for folks on the spectrum and they all play a role – particularly the touching. Think about it. You have at least three doctors: your oncologist, your surgical oncologist or general surgeon, and your plastic surgeon. Each has nurses and PAs. If you have chemo or radiation, you have all those techs. Plus there are all the phlebotomists and lab techs. Each and every one of them has to touch you over and over and over. Each of them is a human being affected by their own daily struggles. Plus, in waiting rooms and parking lots and labs, you’re often surrounded by other people fighting cancer or some other illness – and likely their accompanying loved ones. That’s a lot of touching and a lot of emotion and, for me, a lot of sensory discomfort.
Now, add on the fact that every single facility has fluorescent lighting. Often, the lighting has to be extraordinarily bright so they can see well. There are machines everywhere and they all make noise. And half the time, you’re getting some level of undressed and each facility has its own gowns and sheets with their own textures – and detergents and band aids and cleaning chemicals and music in the background. So basically, it’s nonstop sensory input…plus you still have cancer.
And then there are the hospitals.
From the time I walked in the hospital doors the morning of my mastectomy to the time I left about 40 hours later, exactly 27 people who were not my partner touched me while I was awake and aware. I try not to think about how many more had hands on me while I was unconscious. I don’t know how many individual touches that experience totaled, but it felt like billions. Realistically, it was definitely hundreds. Checking vitals, adjusting my gown, helping me up, taking blood, touching my arm or shoulder when they were talking to me because most people find that comforting. It never seems to end and it was exhausting, even though I was grateful for everything folks were doing for me.
One way I adjusted was that, once in my room post-op, I had my partner open the window blind and shut off all the overhead lights in favor of natural light and one small lamp after dark. I never turned the TV on in that room. Not once. I spent very little time on my phone. These choices worried the heck out of the nursing staff. Two of them asked if I wanted to see the chaplain because apparently lying quietly in the dark with no TV and not looking at your phone usually indicates depression. I kept having to explain that I was just recouping from all the over-stimulation, and I was quite content thinking my thoughts and looking at the stars, but I’m not sure they ever believed me.
In my case, that was just the first surgery, too. Two days later, I had to have a hematoma washed out. A few months later I had exchange surgery. Six weeks after that, my ovaries and tubes came out. Then, the next April, the big DIEP flap surgery and a month later the infection and resultant long hospital stay. Plus all the appointments and expander fills and blood tests in between. Touching, touching, touching, touching – all the time.
Another thing you need to know about autism is that we often have very specific sensory quirks, things that our brains just hate so hard they try to shut down. Mine is seeing anything going into or coming out of flesh – mine or anyone else’s. The most common issue is needles, which are basically the Waffle House of cancer: one on every corner. I absolutely cannot watch my blood being drawn and cannot look directly at the IV needle in my vein (or anyone else’s, for that matter). It’s not the usual queasiness or dizziness a lot of neurotypicals experience, though. This is different. It’s the same buzzing, flashing blinding whiteness I get with other things that cause a sudden sensory overload for my autism. I had stitches for the first time a year before I was diagnosed: two stitches, in fact. Because I’d had a large mole removed. I made it three days before I freaked out and took out those stitches.. I was frankly terrified about how I was going to handle the post-mastectomy ones because there would be a lot. Thankfully, they were almost all covered, so I couldn’t see them, and I managed to convince my brain that there actually weren’t any stitches and we were just feeling the incisions, which would heal.
The drains were another matter. There’s no ignoring those bad boys. I came out of my mastectomy with a drain on each side. The tubing ran internally under my breasts, out through my sides, and down to the drain bulbs – and each was held in place with a couple of stitches so it wouldn’t pull out. They stayed in a couple of weeks because I had so much fluid drainage. I had to strip the tubing and empty the bulbs twice a day and put globs of antiseptic on the exit wounds every time I showered plus regular amounts twice a day. When I switched to the DIEP, I had two chest drains and two flank drains – and one of the abdominals stayed in a full month. When I came out after the infection, I had a new one. All required that same level of attention.
Those drains were one of the hardest parts of the whole experience for me. For one thing, they’re just gross. For another, it took about a week for the holding stitches to start pulling. But mostly, I had to find a way to attend to them – and shower and get dressed and move around and catch sight of myself in the mirror – without quite noticing the way they went through my skin. There were a few dicey moments early on, but I eventually mastered a technique and managed to do what I needed to do, and I will be eternally grateful to my then-partner for doing so much of it in the first few days when I was far too exhausted to manage my pain, my post-anesthesia funk, and my autism all at once.
If this sounds like a lot, that’s because it is. And it’s just the beginning. There’s also the requirement to talk with a blue billion people, the urge to follow the rules exactly when there’s no exact rule, fighting off situational mutism, trying to balance letting healthcare pros know you’re autistic so they can be mindful while attempting to not seem “too” autistic because then they think you can’t handle your own stuff…the list goes on. But on the flipside, there’s the pattern recognition that can help us explain what we’re experiencing more clearly than others and can help us see the good in the bad. If our treatment becomes what is often called a “special interest” for us, we can get so interested and fascinated in the process that the experience itself becomes easier to go through.
If I hadn’t spent so many years working on coping mechanisms and didn’t know myself and my autism so well – and if I hadn’t had the practical supports I needed to navigate what I absolutely couldn’t do and had great providers – being autistic would have made breast cancer monumentally more difficult, maybe even impossible. I got very lucky in having doctors and nurses who were interested in the autism experience and willing to learn new things from me as they treated me. None of them used my autism as a reason to discount my thoughts, concerns, ideas, or experiences – a thing that happens a lot – and none of them presumed my autism came with intellectual disability, which I do not happen to have, another thing that happens a lot. Other healthcare pros could learn a lot from them – and from us, if they’ll just listen.
When you’re on the spectrum, you just experience the world differently. You see and feel and think about things others don’t. You get hung up on stuff that other folks don’t even notice and breeze right past things that stop most folks dead in their tracks. Imagine what medicine could learn if they talked to us. Imagine what could change if they listened.
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