December 2022

It hurts. The stream of water hits my small body and I shrink in myself. I hear the other children, shrieking with laughter. Are they having fun? I’m suffering. But I must endure it. It doesn’t occur to me to just step aside, to run away, as the teacher in the pre-kindergarten sprays us with water from the hose in the hot summer. 

It blinds. The light is too bright, too much. I squint, trying to see, my eyes full of tears. I stand rooted in place, blinded. Mercifully, one of the teachers notices my struggle and lends me a pair of sunglasses from a kid younger than me. The brightness stops. I breathe out with relief.

It calms me. I’m standing alone, facing the corner, in a room full of children. I’m dancing with my imaginary friend. I’m not interested in the children. I’m content. 

The signs were there from the beginning

In retrospect, it should have been clear. I was a quiet, bookish child, but I often had what my parents called “tantrums”. I was at the same time too adult and too childish for my age. I was too obedient, taking things too literally. 

I was so picky with food that when my mum asked me, slightly desperately, to write down my own meal plan for the weak, I wrote “eggs” and “potatoes” over and over for every day.

I walked through the preschool with my hands balled in fists, a gesture that nobody at the time recognized as a sign of deep anxiety. I didn’t talk much to the other children. I think I was afraid of them. I never picked the “good” toys. Instead, I was waiting for what would be left.

Everybody remarked how similarly I behaved as a child as later my little autistic cousin did. But in my childhood, in a newly democratic country that was still recuperating from long decades of communism, “women couldn’t be autistic.”

The psychiatrists didn’t find out I’m autistic. My aunt did.

The first person who had any suspicion was my aunt, who has an autistic child and is autistic herself. Not a single one of the small army of doctors and therapists that surrounded me from my early teen years when my mental illness broke out of control and nearly killed me had a clue.

They showered me with psychiatric diagnoses, but they weren’t the right kind of diagnoses. I went through two months-long psychiatric hospitalizations, and still, the person who “diagnosed” me with autism was my aunt. She sent me an article about how autism can manifest differently in women and how it often goes unrecognized.

At first, I was hesitant about the whole idea. I was very, very careful of thinking that I could be autistic because I discovered that in a corner of my soul, I was scared by how much I wanted it. 

It would mean that it wasn’t my fault. That I could stop blaming myself for the many things I lived in shame of for my whole life. That my social awkwardness, lack of understanding, all of the cringey moments weren’t my fault. That many of my psychiatric conditions may simply result from an environment that doesn’t accommodate differences. 

I could forgive myself for being different

Autism is invisible, but it isn’t intangible, like anxiety and depression. It’s a physical handicap, a physical difference in my brain from the brains of other people. At the time, I thought of it as a disability that in my eyes was not much different than someone missing an arm or a foot. If I knew I had a real, physical handicap, I could go much easier on myself. Now I realize that my brain isn’t disabled, just different – with its advantages and disadvantages.

Because I wanted that convenient label so much, I was very hesitant about claiming it. To me, for my whole life, I was “normal”. Yes, different from the others, but normal for me. Now I had to dive into a deep rabbit hole of my oddities and try to see things that I would rather not. I didn’t want to think of myself as “weird”.

Autistic imposter syndrome

I didn’t think autism really belonged to me. I didn’t want to appropriate the condition. I thought that perhaps I just wanted to be autistic because it would absolve me of my many shortcomings. This kind of thinking is called “Autistic imposter syndrome”.

I was also afraid that from the moment I was diagnosed, if I was diagnosed, I would try to avoid things that hurt, uncomfortable things, “because I’m disabled”. I was scared of losing my drive for overcoming. 

And there was also a dream to mourn. A dream that one day, in the future, I would be cured and as healthy and able as anybody around me. Because if I was autistic, there would be no cure.

A surprise ADHD diagnosis

It took me years to finally decide to get diagnosed. I applied to the best institution in our country. I was lucky that I have been able to pay for it then. They sent a lot of questionnaires, and interviewed my parents, my boyfriend, and finally myself. And then the verdict came: Not only I’m autistic, but I also have ADHD.

38 years of my life and I was finally holding the beginning of the answers in my hands.

But… people don’t really know what autism is

The diagnosis hasn’t been the all-absolving solution I hoped for. Shortly after finally getting diagnosed, I realized that telling people that I’m autistic won’t help me much. Because pretty much nobody around me understands what that word really means.

One of my friends said to me, hesitantly: “But I thought autistic people lack empathy, and you are the most empathetic person I know.” Contrary to popular opinion, autistic people are empathetic – in fact, we can even be hyperemphathetic, which is my case. I can’t even watch a sitcom because the humor is based on the premise of unpleasant things happening to people.

I decided that when I need to communicate something related to my autism, I will concentrate just on the relevant part.

“The music is too loud for me. Could you please turn it down?

“I need to be alone right now for a moment.”

“I can’t recognize and remember faces very well, so it’s very likely that we will introduce ourselves to each other several times until it sticks.”

I reveal the whole picture only to the people I trust – and to the people I fear. People who could make my life harder if they didn’t know there is an actual reason behind my odd behavior, however skillfully masked.

The benefits of being diagnosed

But am I glad I got diagnosed? Definitely. I found a community in various Facebook groups – and information. Coping strategies, advice, the feeling I’m not alone in this – all amazingly valuable things.

A few of the Facebook groups that I love are Autism Late Diagnosis/Self-Identification Support and Education, Neurodivergent Cleaning Crew, and Neurodivergent Cooking Crew. I also like to read Facebook pages like Diary of a Mom, who has an autistic daughter and is one of the gentlest beings that walked this Earth, Neurodivergent Rebel, NeuroWild, or young autistic advocate Summer Farrelly. Youtube videos, for example How to ADHD or Purple Ella’s videos on having both autism and ADHD are also very helpful.

The unexpected diagnosis of ADHD that I got along with the autistic one helped a lot too. Being autistic with ADHD can be a complicated thing, because the traits of both diagnoses often clash, making you a study of contradictions. The advice that helps just autistic people or just ADHD people may not suit you very well. But I could see now how much of my behavior is influenced by ADHD and I learned to understand myself much better.

I also got much better at forgiving myself. It turned out that while there isn’t a cure for autism or ADHD, the diagnosis itself can be a cure for self-hate. For the pressure that I was always putting on myself, for all the things that didn’t allow me to relax and just be myself. I didn’t lose my drive – the drive just got a different direction. I got a lot better at accepting myself as I am. And that’s what really matters.