DISCLAIMER: The following post describes my personal experience of discovering and embracing the fact that I am autistic. Diagnosis played a role in my story, but it may not in those of others. I want to make it very clear that self-identification as autistic is entirely valid in its own right as many autistic people either do not have access to diagnostic assessments or have other reasons for not pursuing one. Please note that every autistic person’s experience is different and I encourage you to seek out the stories of other autistic people to get a much more comprehensive understanding of the diversity of the autistic community.
I’ve felt a strong urge to write this post at regular intervals over the past months. However, time and time again, I hesitated. It’s somewhat ironic that after spending hours combing over every scrap of literature I could get my hands on, filling in countless questionnaires, and having an official screening report tell me in black-and-white that I tick every single box, I still have doubts. As if at the end of my final diagnostic interview, the assessor would be like “Well, you do fulfil all of the criteria, but you’ve been a little too confident on that eye contact just now, so it’ll have to be a no from me.”
At time of writing, I am still on the waiting list to schedule my final diagnostic interview, which is the final part of the diagnostic assessment process. If you are reading this, it means that I have recently completed this interview and received my formal autism diagnosis.
Some people may question the purpose of pursuing an autism diagnosis as an adult. “Clearly, you’ve managed to get by so far, so why do you need it now?” Well, about that.
“Highly sensitive,” “gifted,” “just very shy”
As far as I can remember, I’ve been aware of the fact that I don’t “function” like my peers from quite a young age. My paediatrician at the time described me as a “highly sensitive child” and expressed her surprise at the fact that I was talking in full sentences at a very young age. My awkwardness and sometimes even apprehension in interacting with others was generally attributed to me just being a “very shy” child. I have since come to learn that all of these things are common early signs of autism.
Not only did I start reading earlier than most children, the intensity with which I read was also considered unusual. I loved stories, particularly fairy tales, but I also quickly developed a passion for encyclopaedias. I have distinct memories of going through them again and again, to the point where many of my childhood books started to fall apart as a result of the sheer usage I was subjecting them to.
Even as a child, I was known for absorbing factual knowledge like a sponge and to this day, people frequently express their admiration for my at times… well, encyclopaedic knowledge on certain topics. This side of myself is well-known to outsiders, but what practically no one sees is how I acquire this knowledge.
The literal hours spent reading, listening, and watching content related to my interests. The intense focus, which sometimes borders on full mental absorption, with which I engage with these topics. The daily obligations and basic needs that go unnoticed because I’m so mentally consumed by my passions. All of this is and has always been invisible.
Autistic people don’t owe you a justification
Speaking of invisible: Learning as an adult that you’ve been fumbling your way through life with an invisible disability since the very start obviously throws you for a bit of a loop.
Now, even as I’m writing this, I’m struggling to determine how much I should disclose here. My initial plan was to delve into some detail on the struggles I face on a daily basis. And while I do think that there is value in discussing that, I started to question my actual motive behind it.
A fear that many autistic people share is that no one is going to believe us. This fear is particularly ironic considering that autistic people tend to be among the most rigorous researchers on the planet and are literally the last people to claim something they are not absolutely 100% certain about. However, it is also entirely justified because so many of us regularly struggle with being misunderstood/not believed. Seeing as autism is a mostly invisible disability, we rely on the empathy of others to believe us when we share our experiences. Sadly, way too many people do not grant us this shred of humanity.
This post is a good example of this paranoia. I expect that I will wait until I have my formal diagnosis before I publish it – even though it gets harder and harder for me to keep this a secret. I started looking into autism in late 2022. I started the diagnostic process in January 2023. I went through my phase of impostor syndrome, I considered every possible god damn angle to this situation, I have read countless books, articles, and even academic papers, I’ve listened to other autistic people talk about their experiences for hours. At time of writing, it is October 2023. There is no doubt in my mind that I am autistic. In my heart, I know who I am. And yet, I still fear that if I were to publish this post now, before I receive my diagnosis, I would not be believed.
Considering all of this, I have actually decided against going into great detail about my personal challenges. I will discuss all of that eventually, in the proper context. But I don’t want to do it here, if the only reason for doing so would be to convince neurotypical people that my struggles are real and deserve to be acknowledged. If there is one thing I learned from listening to other autistic people, it is that for far too long, people outside of our community have taken it upon themselves to “advocate” on our behalf and decide who’s in and who’s out. Well, that time is over. We don’t need anyone to speak on our behalf and we don’t need to justify our experiences to you.
Strange planet
That being said, I do want to mention one challenging aspect of autism, but only because it is a necessary set-up for what I hope you will agree is a really, really positive conclusion to all of this.
What made me originally look into autism is my profound struggle to make connections with others. This is something I have been aware of for a very long time. For most of my life, I have felt like an outside observer, someone stuck in “spectator mode.” Life, in my eyes, was something that other people were engaged in. I looked around and I saw others making friends, doing silly things, falling in love and breaking up again. And there I was, watching them live. I remember thinking, “How are they doing this?” Not knowing anything about autism at this point, the only explanation my brain could come up with as to why I was seemingly unable to connect to anyone was that I must simply be fundamentally unlikeable. You might see how this was the start of a vicious cycle.
I was still a teenager when I first started pondering that I might need to be prepared to spend the rest of my life alone. When I started writing my first poems, many of them dealt with feelings of isolation. I did not set out to write about this topic, it just seemed to flow out of my fingertips. My second German poetry collection was called glaswand (“glass wall”) and large parts of it centred around this idea of being stuck behind a glass wall, an invisible barrier that separates one from the rest of the world. At this time in 2016-2017, I had encountered the term “autism” perhaps once or twice, but looking back at this collection today, it almost seems as if it was written specifically as an autistic poetry collection.
Of course, on the surface, I was very much taking part in life. I had some friends, I did stuff, sometimes I even did stuff with friends. But this inability to truly connect with others was something I felt at a deeper level. And as I mentioned above, it was increasingly combined with a relentless amount of self-loathing that only seemed to get worse over the years. The hatred I so regularly felt towards myself was intense and often caught me by surprise because there was ultimately no rational explanation for it. It is so frightening when, at any point, you can fall victim to this onslaught of thoughts berating you, obsessing over every single mistake you make, and telling you repeatedly that no one could ever truly love you. If you’ve never experienced this, it is difficult to convey how hellish it is to live with a mind that seems to be actively hostile towards you.
I never had an explanation for this. I just assumed that this is what everyone has to deal with and kept quiet about this part of my life. It was only when I started to learn about autism that things suddenly started falling into place.
When living becomes performing
A major aspect of late-diagnosed autism is masking, i.e., “the active suppression of the telltale signs of anxiety and (other) autistic features in order to maintain the appearance of confidence and social prowess” (quote from this article on Embrace Autism). Masking is essentially a survival strategy based on concealing autistic traits and stringent self-policing to ensure that what makes us different is not picked up on by our peers. When I first read that it is very common for autistic people to feel exhausted all or most of the time because of the heavy mental toll masking takes, my heart sank. While I have struggled with insomnia in the past, in recent years, my sleep quality has generally been very good. I like to get up early in the morning, but I go to sleep early as well, so I always get 6-7 hours of sleep every night. And yet, on most days, I still practically collapse into my bed at the end of the day.
But masking does not just explain my limited energy resources. It also finally gave me the key to understanding where my self-loathing was coming from: It was my authentic autistic self rebelling against the mask it had been suffocating under for the past two decades.
Masking is one of the key aspects of autism, especially when it comes to late-diagnosed people, and I eventually want to dedicate a whole blog post on the topic. But what I’d like to highlight here is that once you fully understand masking and its effects, it leaves you with what I consider to be the most terrifying realisation post-diagnosis: If a majority of my teenage and young adult life has been spent behind a mask meant to appease the outside world, then who actually am I?
Grief is said by many to be the most difficult emotion to deal with. And as a late-diagnosed autistic person, you do grieve. You grieve the parts of life that will forever be lost. I spent the majority of my late teens up until today in my late twenties acting out the life of a person that I believed society could accept. I will never be able to get those years back. And the person I thought I was for so long turned out to be nothing more than a cardboard cutout, devoid of any real soul. This is autistic grief: The mourning of the neurotypical person that you thought you were for the majority of your life.
The advice I was given on how to deal with grief is the same as with any other emotion: Feel it. Don’t fight it. Don’t run away from it. Don’t get lost in it. Accept that there will be grief. Accept that there will be sadness, depression, despair. Accept to feel the pain.
Eventually, you may find that the grief transforms. Slowly, there is a clarity aspect that emerges from it. And in that clarity, you may recognise an opportunity.
The unexpected joy of true connection
At 27 years old, I am a blank sheet of paper. Looking back at my past, I can no longer connect to large parts of it because the artifice of it all has become far too apparent.
At 27 years old, I get to meet myself for the first time. The stranger behind my eyes is no stranger at all. He just thought he had to hide from the world because there was no place in it for him.
My journey of autistic self-discovery coincided with a rather turbulent period of change in my private and social life. And amidst that chaos, something happened that I would have never thought possible: I felt a connection to those around me. I made new friends – as an adult. This reads like the most mundane thing in the world, but to me, it is a fucking miracle, and it is genuinely the most wonderful thing that has ever happened to me.
All of this has made me realise that it is not my autism that made me feel separated from others up until now. It was the mask. Because the mask cannot connect to anyone. It is literally impossible since you are not giving people anything to connect to. But importantly, the mask is not you. You are so much more vibrant and beautiful than your mask and, as I have come to learn in recent months, there are plenty of people who will welcome you into their lives with open arms.
I have been given a life that wants to be lived. Now, I get to decide what that means for me. And I think I’ll start with the most important fact about myself:
My name is Tom and I’m autistic.
just thoughts 