‘If you can empathize with others, you’re not autistic.’ I wondered if I was an alien.’: Nonbinary person shares long journey to autism diagnosis, urges ‘knowledge about autism can save lives’

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Disclaimer: This story includes mentions of suicidal ideation and eating disorders that may be triggering to some.

“My life has been a wild ride so far. I’m only 26, but I already overcame depression, CPTSD, substance abuse, self-harming behaviors, and anorexia nervosa twice.

When I was somewhere around the age of 11, I got help for my mental health for the first time. At that point, I was insecure and scared of failing. I couldn’t keep up with the tasks of school. People could see I was smart enough, but it wasn’t showing in my tests. I was in my own world a lot as a child. People called me shy and a dreamer.

A child covers the sides of their face with their hands
Courtesy of Mik

I always felt different from other people. I did not understand their behaviors, and I seriously considered if I was an alien when I was younger. I also took into consideration if I was mentally disabled and nobody had the guts to tell me. There were many reasons for me to feel different. It just seemed like everybody had a script of what to do in every situation, and I did not. How do other people make friends? How do people know what to do with so few instructions? How do people know when something is a joke and when it is not? These were things I just did not understand.

Unconsciously, I started mirroring and masking. Masking is when you hide your autistic traits to look more neurotypical (non-autistic). Mirroring is looking at other people for behavior and copying that. I looked around me and learned how to behave neurotypical from people around me. I learned you have to look into people’s eyes. When someone made a joke, I looked around: had other people started laughing? If they laughed, I would laugh too. If people would not laugh, I would take it seriously.

When I was 13, I developed depression and an eating disorder. The divorce of my parents pushed me over the edge. Too many things were changing. I could not handle it. All I wanted was control. Therefore, I tried to control my body and food, which resulted in a nightmare. I noticed that when I did not eat enough, I did not get so many stimulations from the outside. As I was almost always overstimulated, I found it really helpful not to eat.

When I was 16, I went to the hospital for urgent treatment twice because of my eating disorder. The second time, I had to stay for two weeks. Right after that, I went to a psychiatric hospital for children. There they gave me even more diagnoses: borderline personality disorder (should only be given when 18 or older, but I got it already there), social anxiety, depression, and anorexia nervosa type 2.

A person sits sideways in a wheelchair
Courtesy of Mik

My mom asked if it could be autism as that is something that runs in the family. However, they did not take it seriously. So, I only got treatment for the other disorders. For 9 months, I was in the hospital.

A person with anorexia lies on pillows
Courtesy of Mik

Group treatments can be harmful to autistic people. It is overwhelming to be with so many people. Also for me, it was very harmful. I was still mirroring people without being aware of it. This resulted in me mirroring other people’s behaviors. As the other people in the group had problems too, I took over some problematic behaviors there. I also got in touch with the wrong crowd in there, which resulted in an abusive relationship. As I was very vulnerable as an autistic person and even more because I did not know I was autistic, so they preyed on me. I got into a relationship with someone you could almost describe as a ‘lover boy.’ This went on for 3 years.

A young person with red hair holds a cigarette between their lips
Courtesy of Mik

Around this time, I was 17. I got some new diagnoses again. Social anxiety changed to social phobia, and they added cannabis use disorder. I had a lot of meltdowns, but nobody saw them as such. People called them mental breakdowns and gave me tools to deal with overwhelming emotions. This never helped, as it was not my emotions that were bothering me. It was life and all the stimulations and overwhelmingness it brought. I’ve been told I was not trying enough. But now, I know I was working on the wrong disorders.

I was in and out of hospital for years as my mental health was suffering greatly. I didn’t know I was autistic, so I didn’t know how to help myself. I thought I was having all of these mental health issues I had to work on. So, I worked on them, a lot. But nothing helped. It made me hopeless. I tried to take my own life multiple times because I could not see how this would ever change.

A person wearing earrings smokes a cigarette
Courtesy of Janne Igbuwe

When I was 21, I was done. I couldn’t take it anymore. I tried taking my own life once again, and I almost succeeded. I ended up in the ICU. The doctors saved my life. After that, they put me on a waiting list for yet another treatment. The list was long, so I waited a year for a spot. In that year I crashed on my mother’s couch as I was still very depressed and suicidal. My mom took days off from work to look after me. They medicated me heavily so I would stay alive at least.

During this year, I had an appointment in a hospital where they could potentially treat me for my borderline. During the intake, they said I should be tested for autism because the treatment could do more harm than good if that would be the case. I thought this was ridiculous! Me, autistic? The image of autism I had was shaped by the media and stereotypes.

When I told my psychiatrist of that time, she laughed and asked: ‘Can you empathize with other people?’ I told her, ‘Yes, sometimes even too much.’ ‘Well, then you’re not autistic,’ was her answer. I agreed, and we focused on looking for another treatment center. Now, I know this is a very outdated view of autism: autistic people can be very empathetic. Even hyper-empathetic, like me. You trust the health professionals you come across because they studied for it. But a lot of them seem to know very little about the autism spectrum.

A person wearing a pink shirt and sunglasses
Courtesy of Mik

I went to another hospital for treatment of my borderline. This time I got some other diagnoses. Alcohol use disorder and CPTSD (complex post-traumatic stress disorder). I had my eating disorder under control at this time, so they took it off my diagnosis list, the rest stayed there as it was. I felt like my life was out of control. I could no see how I would ever be able to get out of this spiral.

I was 22 at the time, and my whole youth I was struggling. I was scared of getting older. I would never be able to hold a job or live by myself. After this treatment (for a year) I went to a rehab facility. We were treating the symptoms, but not what was lying underneath, the autism. Still, I did not think I had autism at all. I just thought I was a difficult person.

After this it went well for a while, I went to study and all was good. Until I got a burnout because going to school 5 days a week was too much. This resulted in a relapse in my anorexia. It went wrong again. I was watching a television show where somebody was talking about autism in women, and I could relate so much. Because I had a relapse again, I thought maybe I should let myself get tested. So, in the intake, I asked the psychologist about it, and she put me on a waiting list for an assessment.

An autistic person holds their head in their hands
Courtesy of Mik

In that eating disorder clinic, they had a special group for people with an eating disorder and a question if they are on the autism spectrum. The numbers of people with both autism and an eating disorder are so high this is needed. It was so nice to hear about other people’s experiences because they were so similar to mine.

After a while I got my assessment, they talked with me, gave me some tests, and they talked separately with my parents and my partner at the time. After some time, the results were in. I was sitting in the room with my partner at the time, waiting for the results. They told me after doing the assessments it was very clear: ‘You are on the spectrum,’ they told me. I was so happy and relieved. Finally, I knew what was going on. All the treatments that didn’t work were not my fault. I was born this way. I can’t help it.

A person wearing a red jacket
Courtesy of Mik

After that, a lot of things started to make sense. It was like reliving my life in my head. Different scenarios would pop in my head and I would think, ‘Was that because of autism?’ For example, I smoked cigarettes, but only when I was around other people. I figured out I did this to have an excuse to go outside. It helped me socialize with people as I would go outside with the smokers, and it was a great help against overstimulation because I could take a break when stimulations would get too much.

I understood my rebellious behavior. I didn’t understand how people always knew what to do, so I created this wild and rebellious character for myself. When you rebel, you don’t have to follow any rules. So, if I would make a mistake in behavior, I could blame it on being ‘the weird rebel who doesn’t care.’

A person smokes a cigarette
Courtesy of Janne Igbuwe

Ever since I got my diagnosis, I started to understand myself better. I am myself more. Being autistic is a big part of my personality. Hiding it away for so many years has done a lot of harm. I have also been very angry. If I had known earlier in life, I’m sure I wouldn’t have had to go through all the suffering I did I would have been able to create a life suitable for me instead of trying so hard to fulfill everybody’s expectations.

A person with red hair covers their face
Courtesy of Mik

This is one of the reasons why I am speaking up about it. There are so many people out there who don’t know they are autistic, and it is harming them. I want to show what autism can also look like, so people know they could be on the spectrum too. I almost died being undiagnosed autistic. By spreading more knowledge about autism, we can save lives.”

A person with pink hair and their partner
Courtesy of Mik
A person wearing a colorful skirt stands in the street holding a rabbit
Courtesy of Mik

This story was submitted to Love What Matters by Mik of the Netherlands. You can follow their journey on Instagram and YouTube. Be sure to subscribe to our free email newsletter for our best stories.

Read more stories like this here:

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‘Do you want to be my friend?’ They’d laugh and walk away. There were unwritten rules to friendships.’: Nonbinary person shares autism diagnosis

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