My Diagnosis Story, Or how I met myself for the first time  

I was in my mid-thirties, sitting in a therapist’s office about to bare some of my inner most thoughts about who I am, and I was flippantly dismissed. I’d managed to make it my entire life without officially “knowing” I was Autistic. Though, I always felt “different” in some way which I could not define I never took it too seriously. However, recent events in my life had driven me to an “aha” moment to pursue a diagnosis of being on the Autism Spectrum. So, I did what I do: I researched. I jumped online, read post after post on forums of people, many of whom were in their 50’s, on their second or third marriage, or recovering addicts, all finding out later in life that they were Autistic. I related to many of the themes in their stories. I spent hours reading the DSM definition and comparing it to myself. I explained all this to the therapist. The room went awkwardly silent.

He then proceeded to tell me that I was not Autistic. Pulling out his phone to access a digital version of the DSM, he challenged everything I said about myself, and that was that. It would have seemed that the door was closed.

In retrospect, this event was either a testament to my learned ability to mask, the poor education on Autism he received in school, the blinding capability of stereotypes, or a bit of all three. Regardless, I rejected his professional opinion and kept looking until I found a psychologist who did diagnostic testing and was more knowledgeable about the subject and scheduled an appointment. I won’t go into what the testing is like, there are tons of good references online, but after testing and waiting a couple of weeks, I got my diagnosis. I am Autistic.

There, in a hotel room 1,500 miles from home, I was finally introduced to myself, as I actually am.

The impact of my diagnosis took a few days to set in. I had to travel the next morning for work and stayed distracted by that until the last day of my trip when I found myself with a few idle hours in my hotel room. It was only then that I could process what all this meant. Even though I expected a diagnosis, I had not fully grasped its importance. Slowly, sitting in that hotel room things began to make sense. I could look back at my life, see situations and begin to understand why I did and felt a certain way. I cried. There, in a hotel room 1,500 miles from home, I was finally introduced to myself, as I actually am. It was bittersweet; finally having an understanding of myself and how I interact with the world, all while wondering what my life would be if I had known myself earlier.

Let me explain this a bit. I do not believe that a diagnosis of Autism Spectrum Disorder (ASD) makes you Autistic – no, that is something you are born as. However, it is a descriptor which helps me understand how I am in the world. For my entire life, I’d watch as I struggled with things that others didn’t and just assumed I did so because I was lesser. I marveled at how other people seemingly were able to turn off their brain and not obsess with an internal dialogue about a difficult problem at work throughout the weekend, how I assumed everyone hid their (what I now know as) verbal stimming after a difficult meeting. How they could so easily enter, engage, and keep a social conversation going without simply wanting to go on and on about a topic which they find interesting – much to the disappointment of the poor person stuck in the conversation. I just thought everyone was like this, and I just sucked at dealing with it – I simply must just suck at being human.

Sometimes, I could frame this to myself as a badge of honor, other times it manifested as self-pity or self-hate, but this was the going internal dialogue I had with myself and it, quite honestly, stifled me in so many areas of my life. Sure, I’d done well for myself being an undiagnosed Autistic, but I’ve paid a personal price for not knowing, and, though you will never see those scars, they will be with me forever.

This is the beautiful jubilee of diagnosis. I cannot change who I am, nor my past, but I can for the first time understand myself as (to steal the words of Temple Grandin) different, not less. Knowing that I am Actually Autistic has given me the room to see myself for who I am, and know that when I struggle it is ok, and when I triumph to remember the parts of me that make that possible.

But here is the problem. I had the privilege of having the time and the means to pursue a diagnosis even after being rejected by that first therapist. I was lucky to find a diagnostic psychologist who took my insurance and, if I needed to, could have found the money to pay for it out of pocket. I also had the privilege of being “High-functioning” and, though I hate labels, meant that outside of being seen as the shy, nice smart guy, was not discriminated against by the educational system or my peers. Not everyone is this lucky and this angers me.

Autistics have a suicide rate of 3 times the average.¹ This data is based only diagnosed Autistics. I would assume the actual number is much higher if you factor in non-diagnosed. However, there are a lot of adults who are not diagnosed. Thanks to previous stereotypes and negative connotations, many autistic adults slipped through life only to find out that they are autistic after having a child diagnosed. Others, have spent years being the “bad” or “troubled” child, and having to come to grips with those labels. It shouldn’t be this way. No one should suffer because they are a deviation from the norm, nor should anyone not have the opportunity to learn about who they are. Look, if you are reading this and any of this hits home for you about yourself, or someone you care about, please, pursue getting a diagnosis, give yourself the gift of self-understanding and acceptance.

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