I have really been reflecting a lot on labels, diagnosis, and self identifying words. When we choose to define ourselves with a word many people see this as a self limiting box. People often say, “don’t let labels define you,” or as Colin Wright said, “labels only confine. Aspire to be undefinable.” Now, here’s the thing. I totally agree with this. I lived my whole childhood without a medical label, diagnosis, or pathology placed on me by others. This led me to be free to be myself wholeheartedly as a child which was amazing for me. My parents didn’t force me to assimilate as a young girl. They allowed me to be me and to spend all day lining up my small cars, and then smashing them with my toy monster truck, even though I was a girl. My Dad let me help him fix his car because I was fascinated by the way it all worked. My mother let me eat whatever I wanted even if it was Mac and Cheese for weeks in a row. (Granted I probably could have used more vegetables.) What I am trying to convey though is that they did not judge me for being me. I was allowed to live in my own little world and be silent if I wanted to be. I was allowed to be shy and wasn’t forced to be someone I wasn’t (in my younger years) and that was a tremendous gift. Where I ran into trouble, like many autistic kids, was when I reached my pre-teen, and teenage years. Then it became clear that I didn’t quite fit. What growing up in this fashion as a younger kid, without a label, taught me was that it was okay to be me. I was just me and that was okay. When I reached my pre-teen years though, I began to receive labels that were not so kind. I was a “freak,” “weirdo,” “F*%&ot,”, or some other horrible name. I was ostracized because of what other people deemed me to be. I did not choose any of the labels the kids or adults in my school gave me. This taught me that some words absolutely did not define me, conversely, labels could also help me to understand parts of myself that I was proud to let shine. “Freak” was one of those labels. At first it really hurt, but then I found a whole community of kids who were different like me and together we formed alliances in weirdom. Freak gave me the freedom to say proudly, “yes, I am different and that is more than okay. Not only that, but I am proud of my differences.” I chose to redefine the label thrown on me by others to allow myself to truly shine in all that I was, which was different, and that ownership taught me that great strength can come from changing a label to work for you instead of against you. Labels can equal personal freedom in certain instances, within certain perspectives, because a word can liberate you to be your true self.
When I was initially called a freak I was really heartbroken. My school years were never easy, but I did find my way at times, mostly that was when I was left alone to be me. When I interacted with other kids at recess I learned pretty quickly that I didn’t really understand the way they played, so I just kept to myself. It was in my quiet moments I learned the most about how the world worked. I absorbed so much by observation. I really was a little scientist collecting data on insects, human behavior, the way the leaves float on wind, the way my body jumped and landed, how gravity held me firmly to the Earth, the way my hula hoop would go around forever if I just kept myself at this specific set of positions and speeds, and the way the sun sparkled in pools of water. I was in love with the world and I was so enamored with exploring it. I was at peace in these moments and I was at peace with myself.
It was not until other people, children and adults, started calling out my differences in a negative way that I started adopting a self view that was also negative. I let their perception of me define me because I did not see my reflection in the world except for perhaps in my parents. As I grew, however, even my parents grew exacerbated with me and my inability to just conform and toe the line socially like everybody else did. “Why are you doing that?” “What is wrong with you?” These are questions that will stunt the self concept of any young person from developing positively. This perception other people have that, different is bad, is truly what I was allowing to define me. And until I reframed that and took ownership of my differences I did not have much, if any, self esteem. This was one socially fatal misstep for me in my youth; it was not my inability to read other people. It was not my social awkwardness. It was not my interest in subjects or the way I learned. It was that I was allowing myself to be defined by other people’s labels for myself. And perhaps in this way, that is what people mean when they say we should never allow labels to define us. Yes, I agree. We should not let other people’s judgement or misconceived perceptive define us, whether doctor, principle, parent, peer, or even negative self belief. We are all worthy intrinsically of being who we are how we are (as long as we are not hurting others). We are all multifaceted and amazing human beings with unique perspectives, challenges, self concepts, and beliefs. It is truly in our differences that we shine.
Why do we seek so desperately for sameness? Why do we seek so desperately to avoid who we truly are because I can guarantee you, we are all many shades of amazing. Each and every human on this Earth is worthy of love, acceptance, and respect. And perhaps if we allowed our differences to shine we wouldn’t be so afraid of labels because we would be operating from a self love perspective. When we confidently own all that makes us who we are we reclaim our power. We change our perception from outside to knowledge that who we are is okay, and not everyone will understand us, but that shouldn’t stop us from being who we are. We shouldn’t allow labels to stop us from being who we are, but we also should not be so afraid of taking ownership of parts of ourselves that we refrain from ever stating I am, x, y, z. Labels can give voice to the unnamed. Labels can be road signs to find others with shared experiences.
I have been using the label of autism for a year now. I am 36 years old and I was diagnosed last year. The most interesting thing, to me, is that the label Autism fit me the same way freak did. Other people saw one thing when they said freak to me. They saw me and the word as a negative thing. I, however, proudly owned that label because I saw the gift in my difference. I saw that being different meant I could play nine instruments. It meant that I could draw from memory, and get the trumpet solo in the band. It meant that I got voted “Most Unique” in the yearbook. It meant that I got to define what my life meant, not other people, and it was in my difference that that definition lay. I was proud of being different, just as I was proud of being autistic when I found out. And when I started using the label, Autistic, the people around me confounded me once again because they consistently told me not to be defined by that label. They saw that label as negative. I did not.
I found freedom in finally having a word to define my difference because it meant that I no longer had to live in the dark as to WHY I was different. When you don’t understand the inner workings of your mind or existence it can feel completely anxiety inducing. Not understanding why I was unable to communicate with others easily, or why I went mute, or had sensory meltdowns made it really easy to believe my negative self concept. It made it easy to hide, suffer in silence, and mask who I was. As I grew older it became increasingly difficult to own my fabulous “freak” title because that also meant that I had extreme difficulty holding down a job, relationship, or completing college. When I found out that my differences had a name I was elated because that meant that I had a road map to finally understand the easiest routes to navigate my life. It gave me the knowledge to finally get the help I needed, speech therapy, occupational therapy, behavioral therapy, books, sensory integration, stimming, self soothing tools, weighted blankets, cured insomnia, healed relationships, etc.
Since discovering I am autistic I have my first solo apartment, car, budgets, paid on time bills, a full time job, and self confidence I was never really able to completely own before I gained the label Autistic. Sure, I was proud of being different, but I was not proud that I could not hold a job, or had numerous misunderstandings and dangerous interactions with others. Finding out why I am different gave me the freedom to make choices for my own self improvement and I am flourishing with my new label. When I first started telling people, “Hey! I am autistic!” I said it with elation at finally being able to understand myself and I had hoped that others would be open to understanding that too. What I did not expect was sweeping invalidation and disregard. “You don’t look autistic.” “Oh, well you are lucky because I know this person with autism and they can’t function so you must be fine.” Someone even told me to ignore doctors completely because they are just trying to pathologize me. See, the thing is, I sought my diagnosis. I learned about autism and for the first time I finally saw my reflection in the world. I was given a profound and life changing gift because up until that point I struggled in silence to the point of suicidal ideation. No matter how hard I tried or how high I let my freak flag fly, I could not seem to succeed in this world. As an adult my self esteem tanked and eventually led to a nervous breakdown and time in an inpatient facility. Autism was a gift because I finally understood sensory overload, how I hear, why I meltdown, what the difference between a meltdown and panic attack are, why I don’t relate or understand others, why I think the way I do, why I use words the way I do, I mean the list is endless. You could even argue the label, Autism, saved my life because up until that point I had all but given up on continuing to try to fit in this world, even in my own different and splendiferous way. Who wants to exist on the verge of homelessness their whole life?
I didn’t think for one second that people would start seeing me differently because they saw me through their perception of what that label meant, just like the kids in school saw “freak” as a bad thing. I started noticing a theme in the reactions to my announcement. And I started growing increasingly silent about talking to people about my major life awakening and transformation. I am still the exact same person I was before I knew I am autistic. I did not realize that by labeling myself I was giving other people a filter to see me through, a reason to “other” me, and isolating myself. I didn’t realize this because I don’t think differences are bad, but after seeing the same reaction repeated over and over when I say, “I am autistic,” I realize people must see differences and labels differently than I do. The filter of their perception being their own misguided concept of what autism means to them. I see consistently that people aren’t willing or able to hold space for what that label means for me. They don’t see the positives, or the freedom that came with my choice of this particular label. The label then became bothersome when I realized that I am othering myself by using that label because people do not like what they do not understand. A label that, to me, set me free to succeed and be proud of who I am also led other people to view me as broken. That is so discouraging to me because when I finally found the label Autism, I finally saw that I could be proud of who I am. Autism, to me, is not a label, it is intrinsically who I am just as I am American. I can no more change my country of origin than I can my neurology, nor would I want to. I am different not less. I am unique, just as every human is unique, and that is beautiful and what makes the world a varied and spectacular place to be alive.
When I see other people invalidating my choice of self definition I realize that they see autism as a negative thing. I understand this. There are so many lives that have been so greatly impacted by autism and I am by no means saying that their struggle is not worthy of validation. I do know full well that autism can mean fear, struggle, pain, anxiety, sleepless nights, and dread from family members and others with autism. I am aware that it can cause so many hurdles and challenges to overcome with dedicated vision and sticktoitiveness. But what I would like to challenge here is that we can choose to redefine what labels mean to us. We can choose how we look at a label. We can learn to see the beauty in the differences in all forms of human variation. We can learn to see strength over weakness, love over hatred, acceptance over ridicule, and we can hold space for all of our versions of what our self defining concepts and labels mean.
I am proud, excited, and triumphant when I say I am autistic, because just like the proud little freak I was in school, I know that autism doesn’t imprison my multifaceted existence as a being on this planet. It is what sets me free to own all that I am proudly. It is a label I choose to define myself with because it doesn’t scare me. It is who I am, just as I am the same person I was before I had the label autistic. The only difference now, is that I have a map that explains me, and finally I know how to chart a course to be my best and most ausome self.
I would hope that all those who receive this label, or any for that matter, could learn to see the positives that come when we choose to define what labels mean to us and to refuse to be defined by what labels mean to other people. May we all have the strength to rise above and reframe limited perceptions, both within ourselves and without. Is it the label that is truly confining us or is it our perception of what that label means? Can we redefine what labels mean? We define who we are. No one else has the power to do that. I choose to be proud of who I am in every aspect of who I am and my differences are where my strength truly lies. I can never be put in a label prison because I am already free inside to be me. “Reclaim the freedom to be your true self by defining your own identity and wrestle back control of your own thoughts, feelings, and sense of self-worth from those you have inadvertently given power over you.” Labels can, as in my case, set you free.