This article was originally written in Luxembourgish for Konterbont Magazine. You can find it here.
There are two sentences that changed my life. The first is: “Well Tom, you are definitely autistic.” This is something my diagnostician told me on 7 December 2023. My life, as well as my perception of my identity, drastically changed from one moment to the next.
I know from experience that some people will struggle to understand how it is even possible to only be diagnosed as an adult. It was all fine up until that point, so what’s the deal with the diagnosis all of a sudden? Yeah, about that.
Neurotypical (=without neurological differences) people tend to judge situations based on how they appear from the outside: “But you have spoken in public before! But you were in a theatre group! But you’ve always acted normally around me!” Such a perspective ignores the internal world of autistic people, which often stands in stark contrast to the external world.
Here’s an attempt at describing what it’s like to be autistic, without knowing you are autistic.
Imagine you wake up one day and find yourself sitting in front of a PC. There is a programme on the screen. You neither know how this programme works, nor what it even is. You are not alone. Around you, there are other people sitting at computers. They are all working with the programme and they are doing all kinds of things with it. Everyone except for you seems to intuitively know what the programme is and what you can do with it. By now, you’ve been sitting there quietly for a while and some people start staring at you. “Come on, do something!” You look over at your neighbours’ screens and try to copy what they do. But their programmes have tools that yours does not. Through much trial-and-error, you eventually manage to locate some of them, but they are in a completely different place, and they work in a totally different way.
This is how I worked with my programme for many years. There were even moments in which people admiringly looked at my screen and said: “Wow, you’re really good with the programme!” But I still did not know, what the programme even was and why my version kept crashing randomly.
Eventually, life circumstances led me to consider autism. My diagnosis was made by a private centre abroad, for two reasons. First, the waiting times in our region are often several months or even years long, which is completely unacceptable. Second, I wanted to make sure that the medical experts making the diagnosis were themselves autistic. There are too many horror stories of autistic people that have suffered additional trauma because of outdated procedures and ignorant diagnosticians.
Since my diagnosis, my life has completely changed. It turns out that we humans do not all work with the same programme. This is “neurodiversity”, the idea that there is a diversity of neurological systems in nature. I went into therapy for about half a year, here in Luxembourg, with an autistic psychologist, of course. During this time, I received a slew of useful tips and tools on how to use my programme in a better way.
It was because of one of life’s unknowable whims that I also found new friends over the past few years, one of which would even go on to become one of the best friends I have ever had. The level of support and validation I have received from them is immense and is something that I never thought I would experience. I don’t know where I would be without them today, but my life is infinitely better because they are a part of it.
Many autistic people do not have the privileges that I had and continue to have, and it is important to understand that every autistic person is different. Find their stories and read them, listen to the autistic community! The times in which others spoke on our behalf are over. The second sentence that changed my life was also said by my diagnostician: “Tom, it’s very important that you understand that you will never be able to have a life like them [neurotypical people].” To understand that my life will play out differently, that it will not correspond to the normal “milestones”, is perhaps my main challenge, as it is for all autistic people who are only diagnosed later in life. But no matter what my life will ultimately end up being: It is, finally, my own.
Article image: © 2025 Julia Maaluf
Special thanks to Iris Dudek for reviewing an early draft of this translation!
just thoughts 