Fear of doctors as an autistic adult - Patients on a doctor's appointment

I’m an autistic adult and I’m scared of doctors.

I’m not so much scared of medical exams, although some of them freak me out. It’s the verbal communication with doctors that horrifies me.

Here’s what the horror of doctor’s appointments as an autistic adult looks like.

The fear of doctor’s appointments as an autistic adult

I need to see a new psychiatrist this year. I already freak out about it, even though the appointment is like four months away, and I haven’t even booked it yet.

The last appointment went well, but I was scared of it for six months in advance. And now there is a new psychiatrist again so I don’t know how it’s going to go.

And while I had a good experience with the latest psychiatrist, most of my experiences with this profession are not positive ones.

My previous unsuccessful visits to psychiatrists play in my head like a horror movie.

A hand againts the shower door - Horror movie scene

The doctor who didn’t listen

One psychiatrist I met kept his eyes closed during our whole meeting (I thought autistic people were supposed to have trouble with eye contact?). I told him I got bad side effects from a psychosis medicine (I’ve never had psychosis) and I didn’t want to use it again. I mentioned that the medicine made me so tired I slept all day.

The doctor didn’t listen. He kept his eyes closed and said he was going to prescribe the drug anyway. I could take it three times a day for anxiety.

I guess my anxiety would go away if I was never awake. So maybe the doctor had a point, after all?

The doctor who questioned my autism and ADHD diagnoses

Another psychiatrist questioned my autism and ADHD diagnoses. I had gotten my diagnoses from a private doctor (because I wasn’t taken seriously in public healthcare). Now I was back in public healthcare. The psychiatrist wrote that I had “possibly” Asperger’s syndrome.

I felt like I was living in a thriller movie or something. I had finally gotten my autism diagnosis, and now I “possibly” had it?

The psychiatrist didn’t want to renew my ADHD medicine prescription either. He was more than eager to raise the dose of my antidepressant, though. I had a meltdown at the doctor’s appointment.

The psychiatrist consulted a neuropsychiatrist. The neuropsychiatrist confirmed that I actually had Asperger’s syndrome and ADHD. The psychiatrist reluctantly renewed my ADHD medicine prescription.

According to research, autistic adults avoid healthcare services

According to research, young autistic adults used healthcare services less and less when they reached adulthood.

Why would you want to go to see a doctor when the appointment is a nightmare? I only see a doctor if it’s a question of life and death.

The healthcare system ignores autistic adults

One of the biggest issues is that doctors don’t know anything about autism. Even most psychiatrists are completely unprofessional when it comes to neurodivergent patients.

Of course, the healthcare system itself is to blame too. In Finland, public healthcare is designed to keep patients away. You need to consult a gatekeeper nurse over the phone. The nurse decides if you’re entitled to see a doctor or not.

The psychiatrists in public healthcare come and go, and you need to explain your issues to new doctors over and over again. That’s exhausting, especially when you’re autistic.

A desperate man in a psychiatrist's apointment

The main goal of the public healthcare system is to save money and keep as many patients away from doctors as possible. A system like this ignores people with special needs, including autistic adults.

But you can’t avoid the fact that some doctors should never have become doctors in the first place.

If only doctors were like in the 1800s; funny, old little men carrying their black doctor’s bags. These cheerful fellows were like leprechauns! Surely, I wouldn’t be scared of meeting a silly little leprechaun.

The modern doctor is too often someone who doesn’t listen. They don’t listen to their patients. And they don’t have empathy. If you don’t have any empathy, you should never become a doctor, nurse, or social worker.

A doctor who doesn’t listen is a nightmare for an autistic person. We have different needs than neurotypical people. When a doctor ignores your needs, you get the wrong treatment. You don’t get the help you need.

In my experience, psychiatrists are the worst. Autistic people often have mental health issues, such as anxiety and depression. But we react to treatment differently than neurotypical people. Doctors don’t know that autistic people are often sensitive to medication and can’t even take regular doses.

The standard is to prescribe as high doses of psychiatric drugs as possible. That often leads to serious side effects when you’re autistic.

The hellish communication cocktail of doctor’s appointments

Even if the doctor isn’t a nightmare (although many of them are), communicating with a doctor is stressful for an autistic person.

I always forget what I have to say. So I must have a written list of things I need to say when visiting a doctor.

The issue is that the appointment usually doesn’t go according to my script. I practice beforehand how to answer some questions the doctor might ask. But the doctor might ask surprising questions I haven’t prepared for.

I also need to convince the doctor that my issues are real. Doctors don’t always believe patients, especially when you’re autistic and your struggles may not show on the outside. Autistic people don’t express their pain the same way as NTs, whether it’s mental or physical pain.

Four doctors walking on a hospital hallway

The worst-case scenarios and autistic overthinking take my iatrophobia to a whole new level.

I can’t control the situation at the doctor’s appointment. That freaks the hell out of me because everything depends on how well the doctor understands me.

The feeling of not having control, especially when your livelihood and quality of life are at stake, sucks for anyone. For an autistic person, it’s a nightmare.

Having your back against a wall and everything depending on another person is a recipe for an autistic meltdown.

My iatrophobia has gotten so bad I can’t go to a doctor’s appointment alone. I need a support person (my husband).

Doctors need to learn to communicate with autistic adults

I’m a grown-up woman, autistic, and doctors scare the hell out of me.

How did this happen? Like most phobias, iatrophobia comes from bad experiences.

And I sure have my share of bad experiences with doctors, especially psychiatrists. They didn’t even believe I was autistic so I didn’t get my diagnosis until I was an adult.

Far too many doctors are unprofessional and have no empathy for patients. Most of them don’t know anything about autism.

The public healthcare system has its faults too. It’s all about short-term savings at the expense of patients’ health and well-being.

When the system fails, the most vulnerable groups of people suffer the most. That includes autistic adults.

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