Casey's Self-Realization Journey
(originally written and published October 23, 2021)
Hi everyone. Thank you for being here.
I am here to share some news with you…
The past few months have been a period of deep reflection, of self-realization, and of new awareness. At 33 and a half years old, I have been awakened to the fact that I am actually autistic.
What is autism? It's technically classified as a "developmental disability" that affects how I experience the world -- how I think, how I communicate, how I socialize, how I process my senses, and more. Basically, I am wired differently than most people (I'm 1 in about 68.)
This is the point where in writing this script I wondered what to say next.
I guess the first thing to clarify is that yes, the identification of my neurotype as autistic has in fact been “diagnosed” by a clinical psychologist with expertise in this area and who regularly performs psychological assessments including autism assessments on adults.
But I have suspected my differences for quite a while now (understanding it could be related to a possible difference in neurology for a few years and more generally feeling like an outsider since about 5th grade). About four years ago a colleague and now close friend and I were at a conference, and she asked in a nonchalant way, “you’re on the spectrum, right?” The thought had never crossed my mind, but my friend had known someone very close to them who was on the spectrum and saw similar traits in me. I did know that some of the people I had bonded with in life (in grad school, in my work, through my professional association the Association of Moving Image Archivists) identified as neurodivergent (or differing neurologically from what is considered typical).
For me – in part due to my privilege as a white woman working from home in a middle class job –the pandemic has been an opportunity for deep self reflection. A few events and one in particular during the pandemic led to my inquiry into my unique neurology. The major event involved what I now recognize as an autistic meltdown in public at my grandmother’s 90th birthday party (which was outdoors and after vaccinations led to that short period in late summer where we started feeling comfortable being around family again). I spent days ruminating on why that happened to me and created a one page list of bullets identifying some key areas that were and had always been challenges for me. But to be clear - this type of episode was not a new thing for me. I had had similar experiences throughout my life, more so since college but I do recall them in childhood and adolescence as well (often taking the form of uncontrollable crying). This was the first that had been witnessed by so many people whom I cared deeply about. For a long time, I had just shrugged these episodes off as being a hormonal or an overly sensitive person. Interestingly the meltdown took place shortly after an online event at work where we had brought in folks from Massachusetts General Hospital’s Aspire program to talk with us about providing inclusive workplaces and environments for neurodivergent folks. (Side note that the Aspire program has also given me the opportunity over the past several years to serve as a mentor to autistic or otherwise neurodivergent adults working with me in internships at my workplace, through which I have also received training and coaching on working with neurodivergent people, which has also hugely benefited my management skills in general.)
After the episode at my grandmother’s birthday party, I decided to schedule a meeting with a clinical psychologist and pursue a full psychological evaluation. I spent a lot of time reviewing all of the psychologists in my area to determine who would be the best fit and had the expertise in conducting these types of assessments. After an initial meeting with a psychologist, who interviewed me and also reviewed my initial document of bullets that I had created about my lived experiences (both struggles and unique perspectives), she suggested strong indications of Autism Spectrum and that we move forward with an official autism evaluation in person at her office. There were 8 weeks of waiting in between the initial meeting and the evaluation (which itself lasted 4.5 hours). But in the moments and minutes and hours and days and weeks following that initial meeting, all I could think about was the likelihood that I may be autistic. All of my hours outside of work were spent researching autism, e.g. even while I was eating I was listening to a podcast about the subject.
And while I didn’t yet have a clinical diagnosis, the more I read, listened to, and watched – from scientific, psychological and other scholarly literature, to conference proceedings/panel sessions to memoirs written by autistic adults to podcasts and YouTube videos of people sharing their lived experiences – the more I felt deeply sure that I was in fact autistic. I have included a list of some of the resources I used in this search for discovery, including the YouTube channels of folks like Yo Samdy Sam, Autistic Tyla, Purple Ella, and Aspergers from the Inside, and my new Unmasking Coach Katie Shuman (katiewildandfree on instagram). I will forever be indebted to them…
What resonated the most with me were the personal stories of autistic people who have been courageous and gracious enough to share their testimonies of their life experiences, their memories and ways-of-being. By reading and listening to their stories, I was able to map their experiences to specific memories and behaviors of my own, and in doing so, I created a 129 page single-spaced document of reflections organized in accordance with the criteria psychologists use to assess autism.
Despite what is commonly thought of or associated with an autism diagnosis, this revelation for many - and for me in particular - is positive, rather than sad or negative.
So I find myself today in a place where I am celebrating this newfound identity. I am working to figure out how to live my best life and thrive. I am working out how to support others in their journey towards realization. While there have certainly been some ups and downs on this rollercoaster ride of self-awareness (thank you to my family members and friends who have been by my side during this whole process), the dominating feeling could best be described as “euphoria.” I feel like I have been sleep-walking my entire life and I am now awakened and can see all of my experiences, my memories, my ways of being through the lens of this identity that has always been core to my being. So many questions are now answered, and so much confusion is now becoming clear.
It's why I have to work so hard mentally to have small talk. It's why eye contact bothers me. It's why I have a hard time maintaining friendships. It's why noises and light and other sensory inputs bother me. It's why I am so rigid with time. It's why I'm always fidgeting, singing and chanting. It's why I have intense special interests that I hyper-focus on for months and years at a time. (Digression: this paragraph bothers me because it is so incredibly simplified, but I felt like I needed it here. I must add that I do plan to write multiple articles on each of these topics in the future.)
Back to how I feel. I am happy, and I feel validated. This new realization is a vessel of freedom. Of course, there are challenges that come along with autism, including those I have experienced over the course of my life, which only until now do I understand relate to my difference in neurology from the dominating neurotype of our species (heretofore in this article identified as “neurotypical”).
As an autistic person, I am among great company, among them a personal hero youth climate activist Greta Thunberg. Just look up “famous autistic people” and see who you find. But also all the teachers, doctors, artists, archivists and so many others who live their own autistic experience and are navigating this world that wasn’t made for our neurology. I recommend following the #actuallyautistic community on Twitter to hear directly from folks who are part of this community.
A misconception some folks have that I want to clear up is that we “are all a little autistic.” That is not a thing (and while I am sure it is often well-intended, it is not a response I would suggest giving to an autistic person). To an autistic person, it sounds ridiculous, a little like someone calling someone else “a little pregnant”. You either are or you are not pregnant (I am not). Of course, one might have a trait or a couple of traits that are also traits of autism, but there are specific criteria one must meet in order to be autistic. I meet all of the criteria set forth in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders 5th Edition (or DSM-5), which is the manual used by U.S. and some European psychologists in conducting an assessment of autism.
So one is either autistic or not autistic - the “spectrum” does not flow linearly from the not at all autistic to the “very autistic.” Instead, the spectrum looks like a circle. Around the edges of the circle you see various autistic traits which can range in level of intensity/severity from autistic person to autistic person and even from day to day or situation to situation in some cases. I’ve told several folks of my new-found identity and some have, of course, again well-intended, responded with support and assurance that I am “high functioning.” The label of “high functioning” basically means that the person is able to conceal, or “mask,” their autistic traits, to “pass” as neurotypical – in order to meet the expectations of other people. The constant masking of my authentic autistic identity has exhausted me, both mentally and physically. In large part because of masking, I do have “low functioning” moments that most people have not witnessed.
Kieran Rose, or “The Autistic Advocate,” who is an autistic researcher, public speaker and trainer, defines masking as:
Autistic masking is a trauma response. A psychological safety mechanism made up of complex layers of physical, emotional and social actions which an Autistic person is driven to use to self-protect and present an acceptable version of who they are. This occurs by applying, in fluctuating degrees, often un-contextualized and sometimes rehearsed learnt behaviors to appropriate situations; whilst simultaneously suppressing both natural behaviors and self-identity, or conversely projecting an exaggerated identity. All this happens partly consciously with the person quickly learning to dissociate from the act; and from then on subconsciously; pre-emptive, reactive and unplanned; And all at great mental and physical cost.
There is a quote from a book I read recently called You Aren’t Autistic At All that stood out to me: “We...got diagnosed late because we were forced to learn to camouflage. It was our way of surviving but it wasn’t sustainable and eventually took its toll.” Except in the comfort of my home and with my closest family members, I have rarely expressed my authentic self to other people. Instead, I have masked for much of my life. Everyone masks a little bit - you go to a job interview and of course you put on your “best self.” Or you meet your significant other’s parents for the first time. I mask ALL THE TIME. And my mask is not just a “cleaned up” version of myself - the mask has taken the form of different personas over the course of my life – from different eras to situationally. And I never knew I was doing it or that other people didn’t mask to the extent that I did. My family (who knows and sees the authentic me) would describe me differently than everyone else would describe me.
Masking has been a coping mechanism that has been ingrained in me my entire life. At its core, it was and has been a way to suppress my authentic self and project acceptability to others. Beyond the projected personas, specific behaviors required to maintain the mask have included, but are not limited to: not saying what comes to my mind when I have a thought about something because it’s going to sound weird, awkward, random, oversharing or infodumping; not feeling physically able to express the thoughts in my head; preparing scripts/topics to talk about with people; not telling people about my special interests; maintaining eye contact with people when it actually makes it much more difficult for me to process what they are saying when I do so; trying to sit still and not stim or fidget; not telling people that because of a background noise that doesn’t seem to bother them that I haven’t heard a word they said; holding back the tears when a helicopter flies above me or construction is happening around me; not speaking up when I don’t understand something; overcompensating facial expressions, smiles and laughs; feeling incredible tension/distressing emotions I can’t explain after sharing something that is not received well or understood by others; not showing my literal distress (mentally and physically) when my plans or my routine are changed; socializing for longer or more often than is comfortable for me and considerate of my energy; not saying no to or not leaving situations that are uncomfortable or anxiety-inducing for me; and using ALL OF MY MENTAL ENERGY to try to keep a conversation going while having an inner dialogue about what to do with my hands and when and for how long to make eye contact and when to look away. All of this masking has contributed to the perpetual anxiety that I deal with on a daily basis which has manifested itself into both mental and physical exhaustion and constant physical tension.
Masking is one main reason why so many people who are autistic fly under the radar for so long. For 80 years the most recognized phenotype of autism has been that of the white cis (a person whose gender identity is the same as their sex assigned at birth) male (who stereotypically is socially awkward and has a random special interest like airplanes). The science of autism has focused heavily on this presentation of autism (primarily because the scientists studying autism have historically been white cis men), and it is also what the media has portrayed to us (think Big Bang Theory, Good Doctor and Atypical). Of course, this is a valid presentation of autism that many people relate to and experience. But this is not a comprehensive representation of autism, and there are many autistics (including some white males) who don’t present in this way, whose autistic experience is more internalized vs. externalized. Only in the past several years has research begun to focus on the presentation of autism in girls and women, as well as non-binary people and trans people, and others who have been socialized to camouflage their traits - folks who tend to have an average or higher IQ without any co-morbidities such as learning or other developmental disabilities (which would have been caught earlier in life). Autism also presents differently because of historically gendered differences in how boys and girls are socialized. If the scientific research on autism had not itself been historically biased, more girls might have been identified much earlier in life. So we’re now in a time when many people who were not identified earlier in life are now finally recognizing autism in themselves, either once they become parents and their kids are diagnosed or when they reach a breaking point/crisis – when the mind and body are so exhausted that it can no longer constantly project the mask. And they begin a search for answers. Over the past 4 months I have read the stories of many people diagnosed in their 20s, 30s, 40s and even older.
[The next paragraph requires a trigger warning. Feel free to skip to the following paragraph.]
Sure, the ability to mask has been a crucial skill for me over the course of my life (I think I deserve an Academy Award). And it is very useful in short bursts. But I cannot overstate the fact that it is not sustainable, especially over the long-term. I read that the average age of death among autistics is somewhere between 36 and 54 years old, and the primary causes of death among autistics is heart attacks and suicide. So you can see the impact of stress here, and masking is at the heart of it. Constant masking long-term is dangerous.
So as I mentioned earlier, in addition to reading a lot of the peer-reviewed research on the presentation of autism in women, one of the most helpful things to me over the past 4 months has been hearing autistic people share their experiences, memories, and behaviors, which helped me to recognize the same or parallel experiences from my own life as well as spark memories that were buried deep within me that I can now reflect on through the lens of my autistic identity. One of the goals of this and future articles I plan to create is to add my own story, in hopes that by sharing my own experience, I can help someone in their own process of self-discovery.
And now begins the process of unmasking. Yes, unmasking. Recognizing the detriment that masking has on my health and well-being, I am peeling back the many many layers of the onion, of the personas and the facades. My goal is now to learn how to comfortably be my authentic self as often as possible.
Through this process of unmasking, I recognize my privilege as a white person who is autistic. I understand that it is unsafe for some people to unmask and that some in our community are incapable of masking. So another goal that I have is to understand how my privilege serves me in being a self-advocate and to use my privilege to help create more equity for other autistics whose neurological identity intersects with other marginalized identities.
My overall reason for writing this article was first to give back to all of those who helped me in my process of self discovery. Thank you all again for sharing your experiences with me and for helping me find myself.
I also hope to start a dialogue with others who are autistic or are questioning whether they are autistic. Please reach out to me. What I have shared today is a tiny fraction of the information I have already gathered and want to share. I have so many other specific memories of my own that I plan to write about in hopes that by sharing my lived experiences, I can help someone else create a mapping to their own memories and ways of being. I hope to use this as a jumping off point to write more articles (maybe videos?) that go into more detail about autism because I really only touched the surface here in this article.
And finally, as someone whose work as an archivist for the past decade has been to document and preserve history for current and future generations, I see a connection between my identity as an archivist and oral historian and my identity as an autistic self-advocate. The voices of the autistic community need to be heard and preserved. So I am planning to launch a longer-term project to record interviews with and collect stories from the autistic community in hopes that we may find an institutional archive to house this collection and preserve it and make it accessible (in accordance with the preferences of each individual) so that in the future, our community as well as researchers and educators and students and the wider population can have a better understanding of our lived experiences. I would like to invite anyone who is interested or would like to be interviewed for this project to reach out to me at email@example.com.
If you made it this far, thank you so much for reading. ‘Til next time.