A selfie in which I’m wearing a t-shirt that says “Autistic and Queer” in rainbow letters
My therapist Miranda and I meet on Sundays, and last Sunday she said something to me about I often refer to “The Autism Diagnosis”. She asked me why I refer to it that way and what the significance of that is. Her asking this question made me analyze why I refer to it the way I do, and I realized the reason shortly after she asked.
I told Miranda that I think of The Autism Diagnosis the way the world has often perceived the birth of Jesus. Our culture marks time by the birth of Christ. When I was growing up, we marked time by BC (Before Christ) and AD (Anno Domini, or “the year of our Lord”, meaning after Jesus’ birth). At some point, society decided to refer to it as BCE (Before the Common Era) and CE (Common Era), but that was really just renaming the terms for the same demarcation of time, which was still measured by when historians (at one point in time) thought Jesus was born.
The Autism Diagnosis has the same significance in my life. I guess I think of my life as Before The Autism Diagnosis (BTAD) and After The Autism Diagnosis (ATAD). Being formally diagnosed with Autism Spectrum Disorder is the single most significant thing that I think has ever happened to me. It completely reshaped the way I perceive my life story and the way I function in the world and why I am the way I am.
Before The Autism Diagnosis, I was filled with shame. I could not understand why I just didn’t seem to “get” life the way other people did. So many things that seemed to be automatic or instinctive to the people around me just didn’t click for me. I was obsessed with “behaving” the way I thought I was supposed to. I put so much effort into being “normal”, and I wasn’t even aware of how hard I was constantly trying to make my brain work the way the people’s around me did. When something was a challenge, not only was I frustrated by being challenged, I felt ashamed that the thing was challenging - it wasn’t “supposed to be” a challenge. I was so deeply entrenched in systems of performance - performing gender a certain way, performing socialization a certain way, performing capitalism/productivity a certain way. I knew in my bones that there was an explanation for why I felt so incredibly different and challenged by life, but I didn’t know what that explanation was. I tried every type of therapy, every medication, every type of social enhancement (both productive and destructive), and I still didn’t have an answer.
I don’t know why, but I have this mental picture of a stray dog walking against a hurricane with a belief that there is peace at the other side of it despite having no evidence that there is. That’s how the struggle to figure out why I always felt so broken felt. I had this almost rabid determination to keep walking through that hurricane, even though there were tons of signs that the hurricane was never-ending, even though logic was dictating that I truly was just broken without an explanation. And the fight to figure out why I am the way I am truly felt as futile as a malnourished, homeless, neglected street dog walking against a hurricane with some crazy, unprovable belief that nourishment, home, and care were at the other side. I don’t know, I guess it says something about the power of faith, that there is a belief that there is an explanation despite this thing that felt like a force of nature indicating that there is no other side to this storm.
I started therapy at the age of 17, although I had felt that I was broken long before then. During the 21 years between starting therapy and receiving The Autism Diagnosis, I was hospitalized more than once, I went through detox, and there were many times when I thought I wouldn’t survive. 21 years of constantly working to figure out what the hell was going on - especially with so many experts and professionals just not seeing it and misidentifying it - was exhausting in a way I can’t adequately describe. The brokenness that I felt was inherent to who I am was just constantly being reinforced by people who were telling me I was broken and that they didn’t know how to fix me. I had so many struggles, most of which were with work, but many outside of work too. While work was the area I consistently felt I was failing at, I also had a really hard time maintaining friendships, recognizing which people I encountered were unhealthy for me, setting boundaries, and being a healthy partner.
I think maybe the saddest part is that I just didn’t know who I was. I didn’t have any sense of my identity, what was important to me, how I truly felt about myself and the world around me. There was this emptiness that I hated. I had glimmers of feelings, vague concepts and hints of the real Daniel, but there was this distance from myself that was profound and painful.
After The Autism Diagnosis, life is extremely different. I know that I am not broken. I know that I just have a different operating system from the majority of the people around me, but that a different operating system does not make me bad or a failure. The operating system framework allows me to understand the way I move through life with so much more compassion for myself. If the world around me is built for the more common operating system, then of course things are going to be a struggle for me, who has the less common operating system, and I don’t have to feel ashamed of that struggle. I also don’t have to completely rewire the way I think, feel, and act in order to try to force myself to have the operating system that I just don’t have. You can’t force an Android to suddenly be an iPhone, and there’s no sense in trying to shame an Android for not being an iPhone.
I would say that, if there’s one specific thing that The Autism Diagnosis has changed about my life, it’s that I don’t feel shame anymore. Shame was my constant companion, it permeated every thought and feeling, everything I said and did was primarily informed by the shame I felt. I felt ashamed of not fitting in, of not “getting it”, of not performing the way the people around me performed, of not even understanding why everyone was just going along with all of these social constructs that are in place. Now I am truly not ashamed. I can still be embarrassed sometimes, and I can still feel the discomfort of not fitting in, and I still get frustrated when I say or do the “wrong” thing without meaning to, but I do not feel humiliated for who I am as a person.
There are a few people in my life who have been around since the day I was born who have commented that I’m very “open” (their word) in a way that’s unusual for them. Specifically, there are relatives who have stated that my openness is not like what I was taught, what I grew up with, and what the people who raised me were like. I don’t think those relatives are trying to shame me by commenting on my openness, but more than one of them has stated that it makes them somewhat uncomfortable. I was not raised in an environment of openness. I’m not going to get into what my thoughts are at this point in my life about the way openness was viewed by my lineage, but I will say that I think it’s pretty remarkable that I’ve ended up being as open as I am, considering where I came from. And I think my stubborn fixation on documenting my journey and my process might actually help some people. I also know that I yearn to be known by the people in my life, and when people take the time to really know me when I share this stuff, it feels deeply impactful, and like I’m being welcomed into their lives for all that I am. ATAD, this openness almost feels like my mission in life, like speaking the absolute truth about myself and forming a community of people who really know and love each other is an act of resistance and revolution.
Also After The Autism Diagnosis, I feel like I can just stop apologizing for the way I function. I don’t feel like I have to constantly explain my weirdness, and that I can stop putting so much energy into softening or interpreting my differences for the world around me. It could also be just a matter of getting older, but I find that ATAD, I just don’t freaking care if the people around me think I’m strange. It’s okay to be strange, and while the election in November reinforced that most people in our country have no tolerance for differentness, I also just know that there is no way for me to not be different, and so I can stop contorting myself into the “normal” boxes. The Autism Diagnosis allowed me to give myself permission to be fully myself, as different as I am.
Another way The Autism Diagnosis has had a profound impact on my life is in the area where I have historically struggled most - work. Shortly after receiving the formal diagnosis, I met with my manager to tell her of the diagnosis. Since then, she and I have talked about it a few times, and have talked about the accommodations that really help me thrive in a workplace. Lucky for me, my manager is an incredible person, and has stated multiple times now that the ways in which I’m different are actually strengths that benefit my job. I am less afraid of being direct with people ATAD, and have also given my manager a heads up that she is more than welcome to provide feedback to me if my directness gets out of line. Now that I know I’m autistic, I can advocate for the things I need to make life better, and I can read all sorts of resources and literature about the kinds of accommodations that help people like me, and I am not ashamed to ask for direct feedback and clear instructions. And when I mess up - which everyone does, but I am especially prone to breaking the social conventions of the neurotypical world - I am not ashamed of the fact that I messed up, because I have infinitely more compassion for myself than I ever did.
And the biggest impact from The Autism Diagnosis is that I finally - FINALLY - feel like I know myself. I know who I am, I know what’s important to me, I know what I believe, and I know who and what I love. The shame that I mentioned earlier also heavily impacted just understanding and knowing myself. I was so ashamed of how broken I felt that the shame prevented me from being okay enough with who I am to comprehend all of the details and facets of myself. I was so incredibly consumed by the sense of who I was supposed to be and how I was supposed to feel that it obscured my ability to just love who I am and disregard the “supposed to’s”. Now that I know who I am, I know that I love who I am - this genderqueer, autistic, nerdy, quirky, queer person. And knowing the truth about myself - both in terms of The Autism Diagnosis and just the truth about what is real about me - makes me feel even more empowered to write and share and be open about all of it.
So if you ever hear me refer to it as “The Autism Diagnosis”, just know that the significance of receiving the diagnosis and the impact it has had on my life makes it so that I actually measure time by it. My life before the diagnosis was so INCREDIBLY DIFFERENT from how it is after the diagnosis. And I’m going to keep writing about it and sharing about it, because it feels like my calling to do so.