How Doctors Fail Autistic Adults

Food is energy.
Food is energy.
Food is energy.

No matter how many times I remind myself, impaired interoception gets the better of me. I’m tired, dreary, unable to think, shaky, an indescribable sick-crying-type of feeling for which there are no proper words.

It’s no wonder that so many autistic people are severely malnourished or that die of malnutrition. Doctors don’t understand how to treat us. We say what’s up, and they ignore us because we’ve articulated it. We don’t articulate it, and they miss it completely.

When I was a kid, I had all these symptoms that were treated individually. As an adult, knowing the big picture was missing a major diagnosis, I know now that all of those tiny symptoms were actually signs of an eating disorder. I wasn’t eating enough, yet the solution to those individual problems was always to eat less of this and that.

Autistic people should never be told to stop eating something, unless it’s a life-threatening allergy, because we’re already so limited to what we’ll eat and at a high risk of malnutrition. Telling an autistic patient to stop eating Funyuns or chicken nuggets could lead to them eating nothing at all, or losing whatever energy and nutrients they received from those so-called “empty calories” and having even more symptoms that are viewed individually.

I dare say it’s dangerous to treat autistic people without considering more severe diagnoses. I know doctors are advised to think horses instead of zebras, but that advice applies best to neurotypical folks who do not experience sensory issues.

When I’m sick, I experience sensory-related symptoms that neurotypical people definitely do not, that causes my obviously neurotypical doctors to think I’m making my symptoms up. In turn, I do not receive proper care in time before it turns severe. The symptoms may resemble a stomach bug, especially if that’s going around, but the end diagnosis could actually be hypothermia.

I’m not a doctor, but I know from experience that neurotypicals do not care for background context. What neurotypical doctors view as the patient’s “whole life story” might be more important than the symptoms themselves. I wasn’t just working about my day and interacting with a virus — I was spending most of my shift in the freezer or dealing with frozen things. The doors were closed, and even my glasses started getting foggy after a few personal shopper trips.

Doctors ask for and treat the symptoms individually. They don’t ask what you were doing yesterday or before you started feeling ill, as if it’s completely irrelevant. But what if having real conversations with autistic patients, instead of mere clinical ones, was the key to providing better healthcare to autistic patients?

Of all the things in the medical industry, I wish referrals weren’t required for treatment. In order to get the tests I want, I’m supposed to go through a primary care physician, who has to decide whether I actually need those tests.

Most every specialist requires a referral, even if I’m not using insurance. The only reason for this I’ve been able to find is chatter by people in the medical billing industry saying that the prices should be put on display since they’re always made and marked up specifically to get more money from insurance companies.

Is this just an America issue, or does it happen in other countries as well? Because despite having pretty much all the research and reasons to get certain tests, I’ve still been declined and gaslit.

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Comments on this post

Great post! Even after years of trying to get my daughters and me some support, we are still not receiving the right care needed and I am so burned out!

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