Trigger Warning: I am aware that this whole article contains internalized ableism. It being 2023, and myself holding the awareness I do, it would feel inappropriate to not note potentially problematic wording. With that said, I have made the conscious decision to include this wording in order to present my own thoughts and feelings in a complete and authentic way, with the hopes that it helps others experiencing similar to feel less isolated.
Dear Reader – and to my daughters,
I begin this letter in italics, and will continue to use italics throughout to show the many overlapping streams of thought that happen in my head at any given time. These are fully intact streams of thought and the co-occur.
As I write my introduction I think of my daughters, referenced in the salutation above. To these extra special readers, the daughters of my body, of my soul, and of my heart – one day I will give this to you or your guardian, and you will know that I wrote this for you. I write this letter anonymously now (and that may change down the line); my purpose in sharing it to lay bare my soul and my own experiences in the hope that it helps you to never feel unseen or alone.
With thanks for your patience, dear Reader, I ask you – have you ever learned something that changed your life forever? Maybe something about yourself.
Was it something you “knew”, but that you were certain most people would think was among the worst news possible? Was it, for you, some of the BEST news ever? Was it intensely uncomfortable, and yet energetically freeing at the same time? Was this the realization that you, in fact, have a disability? Was it that you ARE an Autistic?
As I write, I keep thinking about my grammar. I know that my friend and editor, who has years of experience in decoding my tone, intent, and errors, will assist in crafting an end result I can share. I am a fully grown adult with a home, family, and career, and I still need to stop and remind myself that I have meaningful support.
If you have or have not had this experience, I’d like to tell you a story – my story. I want to add that this is deeply personal and it can not be taken as true for anyone else. All people are unique. We are the mix of genetics; the ways those genes express in us; our personal history and the environment we are in. Please keep this in mind as you read.
At this time I am not ready to have this story tied to my name; I hope that in time I can remove the “anonymous” byline and claim my words. I am in the process of learning and claiming who I am fully, but it takes time.
I am a neurodivergent human. This means that my brain is made differently than that of many other humans. There is a physical component; the organ in my head is structured differently and functions differently than most people’s brains. The medical field of neuro imaging, of taking pictures of people’s brains, has developed to a point that Functional MRIs, FMRI, can see differences in the brains of Autistics. These avenues of research show that there are commonalities but the findings are not definitive. For this reason, this is not a diagnostic tool and it is worth noting that science can decipher the differences.
Yes, my brain is made different from the brains of the people our society was designed for, the Neuro-majority. It’s truly wild to think about.
The ways in which my nature interacts with the environment around me, and the demands of society, differ from many of the humans surrounding me. This difference can make it significantly harder; it’s harder for me to function in a world that was not made for my neurotype. Disability is when the external environment is designed in a way that makes functionality excessively challenging. I have a disability, actually more than one.
For most of my life I didn’t know that I was an Autistic. I knew I didn’t feel like I fit, but I never knew why. I didn’t understand that the world I lived in wasn’t designed for me to fit into; that I was not made with the naturally occurring skills many people have that make moving through this world seemingly effortless. I tried so hard. Maybe one day I will share more about things I attempted, but let’s say that many of these methods were less than ideal. As the years passed the strategies went from ones people would praise to ones that I am not proud of. It didn’t matter though. I was only chosen by others when my skills or abilities were needed.
I didn’t know why, but I knew that I had to work very hard to do “normal things” and I couldn’t get there either. The people around me knew what to do, what to say, how to progress through social situations, and I didn’t. In my head was a constant struggle to do what everyone else did, and expending that kind of mental energy day after day can be overwhelmingly tiring. I don’t feel like many people in my life understand how exhausting this is, or even what it truly means. You don’t know what you don’t know.
If you know me in real life, you may be surprised by this. It may not make sense. You see me, but have you ever truly SEEN me?
In some ways, I’m proud that the people I interact with regularly don’t see how hard I struggle. It means I’ve been able to mimic and learn social and functional activities to a point that I don’t stand out in any particular way. And it’s okay to be proud of myself, because I’ve worked extremely hard to get to this point. This has also come at a TREMENDOUS price. At this moment I would NOT pay that price again. Which is very hard to say, because I am a person who believes the journey of my past has led me to my present. I have so many things in my life that I am thankful for and I can’t imagine my life without. Yet the price I have paid has involved soul crushing pain, loss of self, and more.
I am just now realizing all the things I have done. All the ways I have modified myself so others could accept me. I didn’t learn these things on purpose and I used these skills expertly, until I couldn’t. Through necessity, fear, shame…I piled on layers of changes, adjusted behaviors, adopted tools, hacks, strategies, and maintained stressors that kept my presentation of self consistent. I walk with all of these constantly so no one knows the difficulty lying beneath.
That baggage has served me well, but it’s heavy. It’s trying and tiring to carry it with me every day and everywhere I go. Imagine some of the hardest things you know how to do. Now envision doing them all day, everyday. Imagine the frequency is so high you forget you’re doing it. This kind of fluency has benefits. I deploy many of these skills without conscious intention, this has helped me move in social spaces. However, I was at a point that I couldn’t choose to not utilize the camouflaging strategies. I could not choose to put the baggage down. I have spent a great deal of money to tell mental health providers “I’m tired” and the maintenance of hypervigilance was my ability to stay safe.
People who walk through life with me think I am a “really strong” person. The irony of this is not lost on me; iIn fact I have poetry from my teen years that talk about being caged. Feeling like I’ve been trapped behind a wall, hidden from even myself. I actually get very mad at hearing that statement, amongst other well meaning ones. Never stopping was survival.
Reader, skip the next paragraph if mortality is a trigger.
I don’t want to be “really strong”. Being “really strong” has almost claimed my life, more than once.
I hid. I hid my humanity from others and from myself. All of the things I have described have a name, Masking. I learned, very early in life, to conceal my nature. I built protection for myself and “functioned” in the world. Every slip of The Mask is quickly punished and pretending to “be normal”, to “fit in” or “act right” is depleting.
Something is always used when energy is expened. The price was to bury my authentic self so far down that I lost contact with it. I lost contact with my emotional awareness. I lack healthy boundaries in many relationships and as I begin to put them in place the backlash is saddening. I am losing connections that I believed were valuable and the truth is I always did. My history is that when I choose what is good for me, social rejection would follow. Today, that is ok. I choose me!
The choices I made with intention; the behaviors that I learned without realizing; the skills I have learned that keep others comfortable also stole basics as well. I struggle to feel internal my own state. As it relates to emotions I now know that this is called alexithymia. There are times that I can label the way I feel, but even those labels don’t “sound right”; this is called dyslexithymia. That can be abstract to grasp, the idea that it is hard to feel my feelings. More concrete examples are not being aware of hunger, thirst, or the need to visit the powder room until the physiological needs are so intense that I can not ignore them. I’m forever being told that I need self care practices, and it’s true. But the sad truth is that the disconnection from my authentic self means that I have no clue how to do this.
I have become very sensitive to the subtle cues in people.
I wonder if this is why so many neurodiverse people I know self identify as empathetic. Perhaps many of us excel at this.
When I focus enough attention on my environment, I have learned to predict people’s words and actions before they have been uttered or performed. The benefit is that being able to note early signs of disapproval and judgment allows me to draw back and protect myself. This sounds like a super power, but it can cause problems too. Most people don’t like being responded to before they have intentionally communicated something. I then latched onto the fear that I would be inaccurate in my predictions. This can slow me down and I have found this beneficial in public settings. However, in personal interactions, I developed healthy friendships in my 30s, this fear is less prominent. So I might interrupt and speak over people or worse yet let arrogance lead the way.
Masking has also robbed me of my ability to rest. When I say I have no chill, please trust that I legitimately have no chill. Friends have joked that I have a 26 hour day; two extra hidden hours no one knows about which allow me to do all the things I do. And I do accomplish a lot. I also struggle.
The way an Autistic person masks is personal. We don’t seek to have the experiences that help develop and shape the mask; the experiences that necessitate this creation are often based in shame and fear and can be deeply traumatic, personal, and protective. Because of this, no two masks are alike in the same way no two people are alike. Even identical twins differ in their humanity.
Many neurodivergent humans mask to hide their struggles and seek to fit in. The result may be the ability to “pass” in social and other situations, but the cost of forcing yourself to be inauthentic in order to be accepted is high. The inability to match expectations, the loneliness, the lack of support and understanding, is painful. Multiple times in my life I have worked with professionals. I have had so many mental health diagnoses. No two clinicians ever choose the same ones. I would look into the descriptions and none were a correct fit in my perspective Many professors of Introduction to Abnormal Psych. will tell their students to avoid self diagnosis while taking the class. This is because different human experience are still human experiences
Please be aware that I am not claiming any of this to be applicable to everyone, this is my own experience.
I crave socialization. My commonly used social tools is a faux bubbly and engaging personality, which I use most when I’m not feeling that way. Is built on real skills; I can be witty, silly, and downright playful. I love many genres of music. I have a good ability to store facts, and I know a bit about a wide assortment of topics and I can chat about many of them. I have learned to ask enough questions in a social situation to get someone to divulge interests, seeking one we share. Once I have found a stream of knowledge we both connect to, I can direct the conversation and enjoy casual socialization while avoiding conversations that confuse me. I’m not sure I was aware of this for many years.
When I learned that I am autistic, my sense of self crashed, hard and fast. That sounds terrible, but it wouldn’t be honest if I didn’t admit how difficult portions of this process are. At the same time the walls and cages vanished. My nature thrust itself to the surface. It has been an incredible experience. It’s odd to feel like I am grieving and finally living at the same time.
There is a meaningful loss for me. I am aware of lost time with me. I am sad and angry about not being allowed to be. I feel similarly about not being helped to remain authentic and whole. Like all grief it comes in waves and some moments are very challenging.
Despite these struggles, I am thankful for this experience. I have told therapists that I don’t have memories of significant portions of my life. I have gotten back memories I didn’t think I could recover, including some relating to some very hard things. With the bad came the good, and it feels GOOD to know my own, personal history again. It feels good to learn to put the baggage down. The boundaries I am learning are actual safety. Very slowly, I am beginning to see some of the aspects of myself that those I love most see.
No one’s journey is all positive, and I am okay that I am no exception. While I got back some difficult, traumatic memories, I also got back memories of laughter and play and joy. And most importantly I have understanding and clarity. I makes sense to me.
So many caring people have told me that I need to be easier on myself. My standards are too high, I’m too much of a perfectionist; if I could just lower my standards, I’d remove some of the pressure on myself. The one gift many of my inner circle have vocalized wanting to give me is the ability to see me as they do. Their perspective has merit. I am gaining clarity around the facts that If I could not match the expectations of the neurotypical majority I wasn’t able to access the interpersonal interaction that I craved.
It’s hard to admit that when I do not bring the precise and highly discerning characteristics of my personality forward in all social settings, I cannot match the expectations of the neuromajority. If/when I cannot match expectations, I am not invited back into social spaces. Therefore, as an adult, I have learned to make myself indispensable; even if someone is not impressed by my social skills, it makes it very difficult to exclude me. This mindset increased the self-applied pressure and resulted in persistent anxiety.
Recognizing the point in my own life where I began to craft this tool is interesting. Atthe age of 11 or 12 I sought a profession that would allow me control over my social interaction with other people. I wanted a job that had a large amount of time away from the neuromajoruty. I wanted one where I could engage a task and stay with it until I completed it. I was really looking to be allowed to intensely focus my attention in one direction without a high rate of unexpected interruptions.
I don’t work in the profession my preteen self thought I would, but the basis applies.
These traits and dreams I’ve described push me to be relentless. You see, when things are “just so”, when I have just the right amount of control, I feel safe. I don”t need all things my way, but the less shifts in my attention the better. I am not a big fan of the unexpected. I have often said that surprises you don’t want are called problems. Problems means there are demands that I might not be able to understand, manage, or navigate.
Safety is important to my well-being. Almost everything I do is to feel safe. I live my life with an Activated Central Nervous System (that’s fancy speak for this – I am in fight/flight/freeze/fawn mode at all times).
The original trigger warning comes into play here – this next statement reflects internalized ableism. I do not feel that skipping this portion, if you choose to, takes away from the meaning of this entire piece. I will note, in bold, where to start again if you choose to skip.
Let me prepare my announcer voice and get out my megaphone:
Living your life this way can win you your very own bright and shiny Generalized Anxiety Disorder diagnosis!
It is not my intention to be glib; please forgive me if this joke came out disrespectful.
Invisible pain is pain, full stop. And I don’t intend to belittle the very real private battles that people fight all the time. I fight this battle. It’s probably the only accurate mental health diagnosis I have ever received.
In my case, working so hard to mask and push down my struggles has led to living a life with this condition. I now understand why it never seemed to fit just right, and why I still struggled so hard. I am working to predict how things will challenge my nature and develop a defense all day.
If you skipped that portion, begin reading here, please.
I recognize that it comes from internalized ableism, and that is something I am working on. I also know I could have left that part out, but I want to be completely open while writing this. I want to drop everything and to show you fully some of the work I put in..
I may think something like that, but I try to stop that kind of thought from flying out of my face hole on the regular. It can be harder than it seems to be for others. I have told people things they didn’t know about themselves, without filter or warning. That is not ok. Especially, when those statements are related to their personal triggers.
I acknowledge that I will never be perfect, but I choose to be better than I was. I can and do make mistakes, and that’s okay. I also take responsibility for the harm my mistakes can cause. I’ve gotten so good at this effort to mitigate my responses and potential damage that I don’t always realize I’m doing it.
Since I created people, I struggle to sleep. My children are in grade school, and have seemingly endless energy. Sleep deprivation has added physical depletion to the list of barriers I overcome to be able to contact the social engagement that I crave.
Writing most of this has been a surprise for me. The cover of anonymity is giving me the ability to let you see inside my very first journal entry. The realization of this is interesting and something I want to respect needs processing. For this reason, I am choosing to stop here.
I want to write more, but don’t know when.
I WANT to write more. This feels nice and safe and comfortable.
I feel comfortable being myself. This is new.
For the small handful of people who can connect this story and my identity, I am good-to-neutral. I have gotten a ton of information in recent months. I have gotten to know myself a bit better, and I’m starting to see why you like me!
See? I’m funny too.
I want to end with this. If you remember nothing else from this, please remember that this is my process. It may resonate with other Autistic’s experiences, and it may not. There are many Autistics that are fluent in Allistic communication and many who are not.
When some is willing to share their journey, as I share my journey, remember we are telling our own stories for so many reasons. One of my reasons is to help allow the diversity of one of my communities to be seen. To acknowledge others’ experiences and deny my own is to remain inauthentic. In bringing these conversations to the forefront, I seek to allow all humans, myself included, the ability to be themselves harmoniously within the context of all spaces. I am also doing this for younger me. I felt so alone for so long, I share my story in hopes that others who feel like they are living on the fringes know that there are many of us out here. Our experiences may differ, but we’re not alone. You are not alone. I AM NOT ALONE!
Finally, I’d like to offer a very special thank you to the Bearded Behaviorist for giving me this space, and to my editor for helping organize my thoughts. Without you two, this process would feel unsafe.
~Someone who is meeting themself and inviting you on the ride