How my Autism affects my Cancer Treatment: Part 1
I have read other autistic people say their autism only shows when they are under stress. This has never rung truer. Over the last three weeks I realised how I have adapted my entire life to accommodate my autism, even when I was undiagnosed. My diagnostician pointed this out last year, but I’m only living it now there are stressful conditions for comparison. I live in unspoilt nature with my significant other, two dogs, and three cats. Then there are the wild inhabitants: leopard, caracal, genet, several species of small antelope, bush pig, baboons, eagles. The nearest human neighbours are several kilometres away. Our house sits at the end of the road, there is no thoroughfare, no people “passing through”. Behind us rises a mountain range, near-impassable by foot. The road to our house is not in good condition, so it’s not easy to visit — you must really want to come here, drive a high-clearance vehicle, and possess the numerical code to open the gate. Get the picture? I see people when I want to, if I want to, and conduct a thriving social life online while managing to avoid the pitfalls of face-to-face social interaction.
The kloof is quiet — no cars, no voices, no doorbells or alarms. There is variety in my days and weeks with few foreign experiences and I mostly have time to prepare for anything unfamiliar. In short, my living conditions are an autist’s dream. Then, yesterday, I had a meltdown. Since I was diagnosed only at the end of last year I’m still getting to know myself through an autistic lens. I’d had these “neurotic breakdowns” before without knowing they were autistic meltdowns. With hindsight, it started with the biopsy.
I was prepared for the mammogram and it was a mere blip on the radar. I intentionally use a radiology practice specialising in mammograms where the all-female radiologists wear funky scrubs and the lighting is dim and the carpets soft. Even when I was told to return for a biopsy I wasn’t too worried. Dr Google had reassured me that the procedure would not be painful. I drove myself back to the radiology practice in a neighbouring town in good spirits, a bit apprehensive, but, I thought, prepared. I’m educated enough to evaluate my sources and had consulted only official cancer sites, which promised no pain.
I can’t remember the doctor’s name, because the pain and invasiveness of the procedure erased it from my mind. I remain convinced he was a veterinary candidate just helping out for the day. He had to administer the local anaesthetic into my breast three times (no problem there, it was a thin needle) before demonstrating the loud, grating “click” the biopsy needle would make inside me as it extracted the samples. The much thicker biopsy needle had to go into my breast through the small incision six separate times. He warned me of the noise twice. I still don’t know if it were a technique they use to fool the patient or if he genuinely forgot, but the other four times he did not warn me. A freak-out happened inside my mind. The final extraction was torturous, either because the anaesthetic was wearing off or because the needle prodded outside the tumour, from where I now know they also take a sample to look for pre-cancerous cells. I said it hurt, he said it was over, he left. The attendant wiped the blood & excess of ultrasound gel off my chest and said I could get dressed. I sat up and had to lower myself back onto the bed immediately to prevent losing consciousness. I felt embarrassed. I have passed out before; once in a dentist’s chair from pain and once or twice from low blood pressure/hypoglycaemia. I did not want to do it again. A wave of nausea hit and the attendant brought what looked like a disposable hat to throw up in. The nausea passed. I held onto the hat. She said I could lie there as long as I needed to do, but I was reluctant to occupy the room beyond my allocated time, this wimp who failed to handle a simple biopsy. I don’t know how long I lay there. Eventually I walked down the passage to the tiny cubicle to get dressed, where I had to kneel on the floor with my forehead resting on the bench until my head stopped spinning. Once dressed I managed to fetch a bottle of diluted fruit juice from my car and drank it all down. I was in shock. I drove to the mall and dragged a cup of takeaway coffee back to my car before I drove home.
I was unable to process the loud, grating sound and the sudden, violent jerk that accompanied each extraction. He should have gone slower; he should have warned me each time; he should have anaesthetised wider or deeper. I was in shock for days afterwards, with intrusive flashbacks. I still can’t think of the moment of extraction without feeling lightheaded. I don’t know how neurotypical women experience a breast biopsy, if they pass out afterwards and remain in a state of shock for several days. I only know I’m not going back to that horse doctor and if there were a next biopsy I will disclose my autism from the outset and ask for what I need: warning and preparation. And I will remind myself that someone else’s “not painful” may be agony for me.
Something similar happened years ago when I had an MRI scan for spinal spondylosis and no-one gave me earplugs. I did not know one should wear earplugs and went through the whole hell with no protection. Afterwards my nose bled onto the carpet in the dressing cubicle and I felt utterly alone and dejected.
Today I was supposed to see the oncologist at a large hospital in the city. The appointment had been made two weeks ago. Initially my biopsy results were sent to the specialist surgeon at the same practice. It took several days to convince him to look at my file before he passed me onto his colleague via their respective scretaries. I asked for a reason for the move from surgeon to oncologist and a secretary told me the latter would explain everything at the appointment. I survived two weeks of not knowing. Yesterday morning the oncologist’s secretary phoned to ask if I could attend an urgent CT scan in the city at 1 p.m. the same day, because the scan had to take place before this morning’s appointment. The city is two hours’ drive away and I was tied up with work. I couldn’t go on such short notice. Nobody could tell me a reason for waiting until the day before my appointment to spring the scan on me and the oncologist, like the surgeon before, was too busy to speak to me. My guess is that the oncologist looked at my file for the first time only yesterday morning and realised I hadn’t had a scan yet. I had to make a decision on the spot. We cancelled this morning’s appointment and booked the scan for later today, which meant entering a fresh waiting period for an appointment with the oncologist.
A few minutes after putting down the phone I sort of convulsed inside. My hands started to shake and my arms and shoulders felt cold. I knew I was going to lose it. “You neurotic bitch,” I thought to myself, a leftover from my marriage. My former husband had called me that. “You cannot fall apart over a simple change of plans!” But I did fall apart.
Shaking inside, I hastily and impulsively cancelled the city oncologist in somewhat undiplomatic terms and frantically Googled oncological practices in our neighbouring town, where I’d had the biopsy done. I found a satellite clinic for one of the other large practices as well as a local surgeon. The rest of the morning was spent firing off emails and securing an appointment with a local (female) oncologist for the fifteenth. Another two weeks of NOT KNOWING. The clinic is an hour away from home instead of the two, or more in traffic, hours to the city, which count when you want to drive yourself to chemotherapy. I have to trust that I will end up with the right doctor for me, because I cannot remain with one in whom I don’t have confidence.
Before leaving this morning I sent an email with dozens of documents required by the new clinic. In the body of the email I did something I’ve never done before: I disclosed my autism diagnosis and asked for accommodations. In my country autistic adult women may as well not exist and I expect neither the practice nor the oncologist would have treated one in the past. So I explained that I do not do well with unexpected, urgent changes of plan sprung on me at the last moment, that I’m sensitive to loud noises, and stuggle to process unexpected pain. All I’m really asking for is to be fully informed in order to prepare myself. It really is all about preparation for an autistic person.
As for the CT scan, it was an anti-climax. I arrived early and it took all of forty minutes, most of which was spent filling in forms. I’d made sure the machine would not be noisy or claustrophobic and dressed comfortably so I didn’t have to remove my jeans, but it was impossible to find a bra with no metal bits and I had to put on a bow-tied gown on top. The iodine injection felt warm, as if I’d pee’d myself, but they’d warned me so it was fine and the illusion didn’t last long. Afterwards I felt tired and dizzy, more from the foreignness of the experience than from the X-rays, and I slept in the passenger seat most of the way home. I’m off to bed now while it’s still light outside and I feel calm and content. This is thanks to my partner who chauffeured me to and fro and gave advice about the CT scan process, which he has been through many times in his own journey with melanoma. Knowledge is power, especially when you’re autistic. And support is everything.
