Mito… a progressive disease that affects almost every part of my body in some way. In fact, it’s almost certain that whatever the genetic error that has caused my mito is responsible for my autism as well, as autism is pretty common in mito. Suffice to say that I’ve had more than a few hospital stays–in the past four years, I’ve had somewhere around 30 admissions and many more trips to the ER. I have written and spoken at conferences and with individuals about medical advocacy and how to do what you can to make sure you are adequately supported. I can give you so many tips and tricks for managing pain, getting questions answered, keeping records, and what to ask your doctor. I can tell you what to pack for a hospital stay, how to manage anxiety about a procedure, and where to get a free ice cream sandwich. You think I’m kidding? Ask your nurse to grab you two graham crackers and an ice cream cup from the freezer on the unit… give it a few minutes to go from rock-solid to something you can scoop with your plastic spoon without snapping it… and I think you can take it from there. Enjoy! (They are most delicious after a week or four of not being allowed to eat by mouth.)
…But really awful things happen too.
In all my time in medical settings, I have had some really awful things happen, too, and I don’t just mean illness and injuries. I’ve had doctors tell my family I was making myself sick on purpose to get attention. I’ve told the doctor the exact feeding tube I need for the scheduled tube change, because I react to the silicone most are made from–and then I’ve emailed the link to the nurse, sent photos of my current tube, told every nurse and tech that came over while in pre-op, and asked to see the tube packaging… then woke up with the silicone tube I couldn’t have. And when I had to go back a few days later to have it replaced with the right tube, I’ve been yelled at by the doctor for saying I had the “wrong” tube put in because that was not true and would ruin her career. I’ve gone to the ER with symptoms that very clearly followed the pattern I get when I am septic, only to be the play thing between disagreeing doctors, continually blamed by each for things the other actually said–not me. I hate it, but I get it. They have to be able to work together and thus avoid holding the other accountable–it’s easy to blame the girl who will be gone in a few hours.
Sadly, I also get that their boggling feud through me was not the thing I need to track some hospital person down to go back to those doctors and set them straight. The real scary thing from that day is that I was septic with a nasty bacteria. I could have died had I gone home.
You can probably understand why my anxiety in medical setting is higher than anywhere else. I am petrified of new doctors. My mom always goes with me to meet new doctors (if it’s one I know well, my day-time aide comes with me). I always tell the doctor that they can say or ask absolutely anything to my mom whether I am there or not, and I sign the paperwork. The next thing we usually say is that I am on the autism spectrum, and while I can be very verbal, that does not mean I can always answer questions or that my words will match what I actually want them to know. I never, ever mean to sound rude or to be difficult–in fact, I worry a lot about both after happening so many times.
Then some version of the same thing happens next, and it goes something like this:
Me: I’m on the autism spectrum, and sometimes my behavior may look odd or I may need to type or show you my iPad to answer correctly.
Doctor: Okay. When did you get sick, what was going on at the time?
Me: Oh, here–I typed it to be sure I tell you correctly.
Doctor: I don’t have time for that! You came because you’re sick–tell me when it started, or I can’t help you.
Other times it’s more like this:
Doctor: Your meds… can you tell me what you’re taking?
Me: …Yes, sorry, I’m having trouble getting the app going. Okay, here we go.
Doctor: It’s really hard to talk to you when you’re looking at your iPad. How about being more considerate? It’s not the time to be playing games.
Me: Okay, here you go. I have my whole med list. The icons are color-coded by time of day and route for taking them, and you can easily see the meds and doses.
Doctor: No, just–never mind. If you can’t just tell me, I’ll look it up on the computer later.
Had someone listened the first time…
In December of 2015, I started having random short episodes–10 seconds, maybe–of extreme stomach pain. My stomach, the organ itself, is paralyzed, and I have a feeding tube. I have pain all the time, but this pain was radically different. It felt like someone had my poor stomach in both hands and gave it a big twist, and then let go for a bit before doing it again… and again… and again for a month. When I was in the hospital at the beginning of January for that good old “you’re not sick” sepsis episode, I told the doctor every time she came in. I told every nurse. They had me on the IV form of the pain med I take at home, and it’s pretty strong stuff. They even increased the dose for part of my admission, but the doctor kept saying that she was sure it was just a little cramp and would go away. The cramp made it hard even to breathe!
A month later, I could not lay down or stand up. I couldn’t bend at all. I was in agony. I went to the smaller local hospital first, hoping they would find the reason and it would be an easy fix. I was the only person there, so I ended up with one nurse running down my very-outdated med list and another picking and pulling at me to put on a gown. Gowns… I absolutely hate them. Surgery is less awful for me than a gown! They are so loose and hurt my skin and they’re just… horrible. I also need still and quiet to answer questions, or I say um, um, um, uh, hold on…This time, I was proud of myself for knowing what to say and then saying it so clearly. “I can’t answer questions when someone is touching me.” Three times I said that, and yet it made no difference, and the questioning nurse was very short on patience.
It turned out that the bumper of my feeding tube that holds it in place inside, an inch or so in diameter, had come out of my stomach and implanted into my abdominal wall! They were so shocked, they brought the scans in to show me. They’d never seen such a thing. I ended up in the hospital for four days and then having surgery. Had someone listened the first time… had any of the fifty people I told listened… But I didn’t “look like” the pain is that bad. I don’t show emotion clearly on my face and that seems to extend to pain. I was using my words the best I knew how–it hurts! It really hurts! It is not okay, please check it out. The words didn’t work.
Medical settings are overwhelming in so many ways. The lights and sounds are distracting enough, let alone trying to communicate and worrying so much about how this doctor will take me. I don’t usually care so much about who thinks what of me, but I have learned the hardest way that these are people who can really mess up my life just because they think something, even if it’s completely untrue. And besides that, my comfort level and safety are both in their hands, so it’s important that they don’t think I’m lying.
There are so many ways to make things better, though!
The system can be adapted to work for us. Many children’s hospitals now have complex care teams so a child with severe long-term illness has someone familiar following them every time they are admitted. For me, it’s all new doctors every time, and they have made some dangerous moves simply because they don’t know better and don’t ask my specialist or PCP or me. Children’s hospitals also have child life teams to help kids who are in the hospital, and as an adult with special needs, I need similar support to deal with the stress and anxiety. The psychology sessions for typical adults aren’t appropriate, as my mood and self-confidence are just fine, and the whole focus on hidden emotions or “how did you really feel?” is really irritating for someone who is as straightforward as people come. I’ve even heard, “But no one is that straightforward–you must be using it as a front to hide something.” No, I just need time focusing on something fun, a chance to express myself in art or music and not words, and some bright colors on my walls!
Another important role is someone who can supportive when it comes to communicating with doctors. A social worker is well-suited to this. My mom has power of attorney, and she is there with me a lot of the time but not every second. I am pretty capable with the medical decisions; I know my illness and my body very well (and sometimes I get in more trouble for “knowing too much”). I don’t need power taken from me, I just need support communicating, almost like a translator for someone who speaks another language. I speak autism-ese! We also need acceptance of other communication methods so that individuals who do not speak are still given a voice and those of us who do speak but cannot always get our needs met that way need to feel comfortable using another method.
We also need better tangible resources. As children’s hospitals are renovated here and there, they include a shocking thing… color! The lack of color and comfort in a hospital is anything but healing. We need fidgets and dim lights and quieter waiting spots–I’ve had to leave the ER due to a meltdown in the overwhelming waiting area before (we drove directly to a less crowded one). Visual schedules would take away the anxiety of not knowing what to expect–the ER can never predict wait time, but they can use visuals to show the order of how the ER stay will go. Each day spent as an inpatient could use a similar setup. Social stories would reduce the anxiety for the unknown in outpatient testing.
It’s that simple.
When a patient of any age comes to the ER, asking in triage if the person is autistic could prompt staff to hand the person or parent a list of the accommodations the ER can offer, simple things like communication support and visuals. It’s that simple. Well, it could be.
I read an article recently about supporting autistic patients in the ER. I was shocked to find my main hospital highlighted in the article for training its staff and having various supports available. I’ve been there many times, including the horror stories told above. I’ve even asked for support. “Autism? But you talk! Those kids don’t talk.” I try to advocate wherever I go, but 3AM after 18 hours in another ER and a ride in the ambulance is not a time I should have to explain that actually, autistic people… well, and so on. You guys already know where that goes.
Recently, there was some concern that my tube had come out of place again, and I wouldn’t go in through the ER for a scan that my doctor wanted to see ASAP. My anxiety isn’t about the surgery or anesthesia… it’s about the doctors not understanding, the confusion and chaos, the sensory overload. I don’t get to choose not to be sick, but these things do not have to be this way, and changing them would definitely help more than the 1.5 (-ish) percent of patients who are autistic. But for these people–for me–changes in the medical system could change our lives by giving us better access to quality care.