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Struggling to Advocate for Myself as a Health Professional on the Autism Spectrum

It seems kind of ironic that someone who is a practicing medical provider with over a decade of experience would have trouble advocating for themselves as a patient. I’ve had a couple of medical issues during the last few months, and it has raised my self-awareness about assumptions and bias that exist in the medical field. Here are some of the difficulties I have noticed.

Being on the autism spectrum, in-person communication still gives me a bit of anxiety. Often, medical terms are the only ones I can use comfortably, and sometimes the  doctor or nurse will ask me if I’m a nurse — a little gender bias, I think. I am fortunate to have the medical title, as I know if I didn’t, using such terminology I would probably look like a hypochondriac patient who had spent too much time on WebMD. Assumptions and bias would escalate. Sometimes I am not sure if I should reveal that I am in the medical field, and even when I do, it doesn’t matter anyway. I would say only about two of my last five experiences with medical providers over the last six months actually acknowledged this and
incorporated it into the visit and plan of care.

During an appointment, I’m trying to process so much information that it becomes overwhelming and I can’t express myself in real time. It’s kind of like I’m processing what the provider is saying and doing (and yes, lots of judging on their clinical judgment and exam skills) as well processing a whole internal
conversation with myself, asking things like:

“When are they going to mention X condition?” Or “I told them X, Y and Z, are they going to make a connection? Are they going to order W or should I try and ask for W now or should I wait until a follow up, or will there even be a follow-up? How should I ask for W without sounding too demanding? I mentioned A, B and C, did they catch it? Do I need to repeat myself? How should I repeat myself? If they didn’t get it the first time, how can I express it in a different way? Is way #2 appropriate? Do they realize why I can’t do X is so important to me? Does it sound like I’m whining? Do they think there is  some secondary gain? Do they think I am overreacting or a hypochondriac?”

This is just a sample of what’s going on in my head. Before I know it, the 15, 20 or 30 minutes is up, my brain is tired, and I just nod about what they tell me to do.

In order to compensate for my social and communication faults, I have a tendency to “walk on eggshells,” being extra careful to not offend or give off a negative impression — again, avoiding more assumptions and bias from the provider. Sometimes I struggle because I try to “stay in my lane” and let the “subject matter experts” do their job.

Lastly, a huge obstacle I have as a patient is the stigma of mental health. It’s not uncommon for many people with ASD to have depression or anxiety. The doctors see my major depression diagnosis and my
medication, and maybe all of the “stars” from the confidential notes when they look through my records. It’s usually the first thing they see, even before they review the reason for my visit or a previous visit. My fear is that they might think my condition is psychosomatic, sometimes referred to as a “functional” condition. Or I fear they will get the impression that I’m a difficult or complicated patient, or that I am whining, or the pain, fatigue etc. is just all in my head. Throw in the female gender factor and assumptions and bias will be even more likely. This happens, I’ve seen it.

Psychiatric/psychological factors have to be considered and weighed in for many medical conditions from fatigue and headaches to back pain. But if I say my depression is controlled, and the abdominal pain with an 18 pound unintentional weight loss is what is really concerning me, please don’t tell me, “It’s probably stress.”

For people on the autism spectrum, being understood is often one of our greatest needs and desires, whether it is in the medical field, school or workplace. The struggles continue and I have slowly been able to speak up more, like asking, “can we check this level?” Maybe the single word “we” does make a difference as we are all on the same team with the same fight for wellness. I have resolved to check my own assumptions and bias as a medical provider, and it has strengthened my goal to provide even better quality and compassionate care.

Getty image by Nanostock.

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