Diagnosed autistic: 3 years on

I received my diagnosis on March, 2014. For those who don't know me, I am from Greece and I came to the UK to do my master's in autism at the University of Birmingham in September 2013. And even though that was the primary reason I came to this country, there was another one: I wanted an "official autism diagnosis". I had pretty much figured out that I am probably on the autistic spectrum before I came to the UK, but there were no diagnostic services for adults in Greece and so I couldn't talk to anybody about it, much less get a diagnosis. When I came here I was incredibly desperate to get one, because I wanted to be part of the autistic community "properly", to be "properly" autistic. My personal diagnostic adventure soon became a part of my academic life, as I involved the online community of autistic women who have so greatly supported me in my research. And whilst I still think that that was one of the most life-changing things I have ever done, it changed the course of my entire career, at the time it was terrifying. After all, I didn't have a diagnosis yet, so I didn't know if I was talking as an autism professional or as an autistic person, which was a major, and very personal, dilemma. 

I remember my supervisor saying that I had to disclose in my dissertation my relationship with my participants, which at the time, almost broke me. I couldn't quite understand why it was so important for me to be so terribly personal in my work, after all wasn't it just important that these women have been going through all these struggles and nobody knows about it? In other words what I was saying was that their experiences, in many ways identical to mine, couldn't be described as "also mine" because a non-autistic practitioner hasn't given me their "autism stamp of approval" yet. It sounds ridiculous to me now, but it made perfect sense to me then and I think that it is a predominant thought of many autistic people who are going through the diagnostic process or are newly diagnosed, perhaps even more so in the case of individuals who cannot find themselves in the predominant autism literature (like autistic women and non-binary individuals). My university was very supportive and proactive about it and arranged for me to get in touch with a clinical psychologist who was part of the team that diagnosed adults in the West Midlands and a few short months later I had my official diagnosis.

And like many members of my beloved online autistic community then, I celebrated. I made a big announcement on my Facebook wall on the beginning of April. I took a selfie wearing a gold scarf. I started this blog. And perhaps most importantly, I could finally write in my academic writings that I am an autistic woman researching the experiences of autistic women. And it was great. Or was it?

There can be no doubt that knowing about my autistic-hood has been of great significance to me and helped me see my life in a very different light. That knowing that I am autistic put so many confused and inexplicable moments of the past into perspective and explained so much. But the problem is that that didn't start from the moment I learned about the experiences of autistic women and how much that explained my own life, but from the moment that I was diagnosed with autism from a much experienced, very kind, non-autistic clinical psychologist.

I remember sitting across from her on our second (and second to last) meeting and dreading what she was going to write on her report about me. I wanted to be autistic, I didn't want to be seen as not being able to do all the things I could do, or in any way less. I remember wondering if a 2000 word document could ever even accurately portray me in a way that will be relevant through the years (and the many way in which I am going to change the way I relate to myself and my identities, as I tend to do) that it will display all my individualities, my quirks, my abilities but also my challenges in a way that doesn't diminish me to a caricature, a stereotype, a section of who I am (and is being autistic all that I am or a section of who I am? And who decides that and how?). But, perhaps more importantly, is she the extremely wise, tactful and experienced person be that will be able to comprise such a document in such a way and does she recognise that she has complete and absolute control over my entire being, essentially rewriting my past, shaping my present and radically changing my future? Does this much experienced, very kind, non-autistic clinical psychologist sitting across from me in the room realise the complete and utter power she has over every segment of my being? And if so, how does she sleep at night? I kept thinking that the mere fact that I could have that much power over another person could make me lose sleep and give me nightmares, regardless of whether I did a good job with my power or not. 

As I was sitting there, this poem kept popping up in my head:

Had I the heaven's embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light;
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.

(W. B. Yeats, "The cloths of heaven")

"But I, being poor, have only my dreams." In front of her, I was completely poor. I was broke, penniless. I had no leverage, nothing that she might have needed that I could have offered, no power. And she was sitting there, reading page after page of my personal experiences that I had written over many days and nights, with many fears, tears and snot and sent to her in a desperate attempt to convey as much of my previous experiences as I could, to prove to her that I am not lying, I am not making things up, I don't just "think" that I am autistic, I have been autistic all my life and it has had terrible consequences time and again, because nobody got me, nobody understood me. And at that moment I didn't knowin which side of that binary she would fall on. "I have spread my dreams under your feet." In that moment, whatever her decision would be would undoubtedly change (as it did) my entire being. It changed how I saw myself. It changed how I saw others. It changed my understanding of how others saw me. It changed my views on the people I choose to surround myself with. It changed the very essence and quality of my relationships. It even changed the entire course of my professional life. 

"Tread lightly, because you tread on my dreams". You tread on my dreams. This phrase was verbatim in a loop in my head, over and over and over again. You tread on my dreams. You tread on my dreams. You tread on my dreams. My dreams. My dreams. Three years later I can safely say that I have never felt more powerless, more terrified in my entire life. I honestly don't know if I would have felt more panick, more cold sweats, more heart thudding, more shiver if someone were to hold a gun to my head and threaten to kill me. She had a complete and utter control over all of me. 

I cannot think of another instance in my life where other people have had that much control over me. Perhaps my mother when she was carrying me in her, giving birth to me and keeping me alive during those first years where I was too young to keep myself alive. But there was a significant difference this time: this time I knew that this much experienced, very kind, non-autistic clinical psychologist had this overwhelming power over me. I was aware of exactly how much that power was and what she could do with it, if she wanted. And I was aware that there was no possible way for me at the time to ever change that power dynamic. She was to take this power, use it to describe me in whatever way she felt necessary and I were to take that description of me home, read and reread it and rejoice or mourn its existence and content. There was no other way.

In the end, I was one of the "lucky ones". My report, or as it read to me at the time (I haven't read it since, I have it somewhere in my inbox because I refuse to even have a printed copy of it in the house anymore) was very positive, very just, very accurate, something that I could share with a person I would need to share it with someday and good things can come out of me sharing that. Heck, I remember that she even asked me in the end to read it and correct whatever I didn't like in terms of phraseology, style, format and even presentation, which I was very grateful of. 

But that, as you may have guessed by me repeatedly using the phrase "this much experienced, very kind, non-autistic clinical psychologist" throughout this document, isn't even the point. The point is that there is no way for me, an autistic individual, to feel like I have any amount of power during that situation which is so deeply personal and defining my very core, unless the kind powerful individuals deem me deserving of the "honour" to have part of that of power. And this model of approaching autism leaves autistic individuals feeling terrified, powerless, constantly in the mercy of others.

Three years later, the fact that I am autistic is widely accepted from anyone that knows me. Nobody disputes it anymore. But, from time to time, I keep remembering that that's how "it all started". It didn't; it all started from my birth, or even, arguably, my conception, but, in terms of my social world, that's when being an autistic person started being a way in which I could exist in the world. In my head, that's when I started having the right to openly be an autistic person (I remember thinking before that: "I need to get a diagnosis, because what if it isn't even that? What if I have some other disorder that I don't even know now that it exists? I need to know that I am autistic"). 

And now, three and something years later, I am left wondering:

Where does that leave me as an autistic professional who works with autistic people?

But, more importantly, where does that leave me as an autistic person?