Actually, I Do Let Autism Define Me: Identity-First Language

person first fallacy.jpg[Image description: A young boy leaning against a wall with yellow and white text, “if all you see is autism, autism, autism, you will miss loving, smart, funny, sweet, insightful, unconditional, empathetic, uniquely observant, impeccably talented, ever so intelligent, and capable of creating extraordinary change in the world”.]

The above image is one I have seen shared around my news feed on social media. One of those generic, feel-good types of messages you hear about Autistic people, the kind that some of us refer to as “inspiration porn”. I have a serious problem with the message in this picture, and am extremely vocal about it. As though autism is somehow mutually exclusive with all the traits denoted. I think whoever edited that photo didn’t stop to think that maybe, just maybe, all those positive traits are a direct result of being Autistic?

For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will  say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.

These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.

Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.

The above quotations, and person-first language alike, are based on the same assumptions:

  1. That Autism can and should be separated from the individual.
  2. That Autism is shameful, and a bad thing: a disease, illness, disorder, something undesirable that should be shunned.

Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.

The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.

Now, for the second concept: the idea that autism is a bad thing. Shameful. A disease/disorder that should be cured. Some people actually justify person-first language by saying, “well, you wouldn’t call a person with cancer a cancerous person”, not realizing how offensive and wrong it is to compare autism to cancer(or any other illness). This, of course, is untrue as well. Autism is not a disorder, nor a disease, nor shameful – while it has its’ challenges (like every other neurotype, including neurotypicality), Autistic brains are not inherently damaged or less-than. Granted, most academic papers now call it such, but there was a time when scientific and academic literature was all racist; that does not validate or justify racism. Just half a century ago, homosexuality was also considered a disorder(and in some countries and right-wing extremist groups, still is), until gay rights activists started to shift the paradigm.

Similarly, today Autistic activists are shifting the paradigm from the pathology paradigm to the neurodiversity worldview. Some day, Autism will (hopefully) be declassified as a disorder, and recognized as a valid form of diversity; neurological diversity.

I am Indian. I do not call myself a “person with Indianism”, because being from India is a big part of my identity; my ethnicity.  I also call myself Canadian, on that matter, since that is where I’ve lived most of my life, and it is also a part of my identity, in the form of nationality. Similarly, you wouldn’t refer to a gay person as a “person with homosexuality”; their sexual orientation is also a part of their identity. Similarly, autism, my brain, my neurology, is a BIG part of my identity. If you wouldn’t talk a certain way about another minority, don’t talk that way about neurological minorities, like autism.

For most of my childhood, I passed as neurotypical. I was taught that autism is shameful. I was told, “don’t let your autism define you”. I was under constant pressure to hide who I really was. To suppress a part of myself that I believed was bad. And ultimately, this did nothing to help me. It only hurt me.

As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.

If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.

An Introduction: My Story

“Read on to learn more about me, my story, and how I’ve come to support neurodiversity.”

I am just one of many passionate people eager to make their mark on the world. Or as Jango Fett from Star Wars would say, “one man trying to make his way through the universe”. But it hasn’t always been easy for me. Life has its’ ups and downs for most people, and everybody will face their share of defeats and disappointments. But I’m not exactly like most, typical people: I am Autistic.

This revelation always brings about different reactions, depending on who I tell. It can vary from “Pfft you can’t be autistic, I’ve met an autistic person before and you’re nothing like them” to “Oh my god, I’m so sorry”. Before I continue, I would like to say that while autism has its’ difficulties, it is not a tragedy. It is an essential part of who I am as a person, and in more ways than not, it is society  that disables us. We are forced to endure a society simply not designed for our minds, or even to accommodate us. There was a time when I saw myself as less, but that time has passed. It was many dark years before I was finally introduced to the neurodiversity movement.

The neurodiversity movement is a movement that will help improve the lives of all neurological minorities, including autistic people. It was largely created by autistic people, but can also be applied to other neurological minorities. Since this blog is primarily designed to share my experiences, blog about my life and my thoughts and feelings, in addition to talking about issues pertaining to autism and neurodiversity, (as well as various other topics but this will be the main focus), I feel it is appropriate I begin with an introductory post about who I am, my story, and my past, that has largely influenced my decision to write this blog. It will also explain why I support the neurodiversity movement. Read on to learn more about me and my story:

EDIT: I am dividing this into segments, to make it easier for people to read and navigate, as this is somewhat long and people may not want to read it all at once, or even every segment. Each “stage” describes different points in my lifetime, examining my experiences, growth, struggles, and mindset. These experiences come together to shape who I am today.

Stage 1: Infancy, Moving to Canada

I am Canadian. It is where I grew up, what I call “home”; what I primarily identify as. I hold the Canadian values of inclusion, multiculturalism, and diversity deep in my heart. But I was not born here. I am from India, and will always bear its’ stamp. I am proud of my Indian heritage, to the point of learning Indian classical vocal music, and learning about India’s history and culture. I moved to Canada when I was three-years-old. Moving here shaped the rest of my life – for the better. Unfortunately, India is still lacking in their understanding of mental illness, developmental disabilities, and neurodivergence, such as autism. Most people there still believe that corporal punishment is the “best solution”, and some think Western culture is inferior for not adopting such a practice. Indian society does not always have compassion for those who are not neurotypical. Unfortunately, this harmful belief continued to affect my life growing up, but that’s for another post. While most people in my family are relatively accepting, there is still a lot of stigma and insistence on “passing” (appearing “normal”).

Stage 2: Starting School/Kindergarten, First Grade & Day-Camp

As it was, when I started kindergarten, it was more apparent that I wasn’t “normal”.  I’d do things teachers found odd or disruptive – lining up my shoes in the same way consistently, pacing the classroom in exact, repetitive patterns. I wouldn’t always get along with other kids, often unintentionally disrupting or teasing them in various ways. My teacher would frequently scold me for this. My junior kindergarten teacher was nice enough, but things got worse in Sr. Kindergarten as I got in trouble for saying things I thought were harmless and/or funny. My peers were usually understanding and friendly enough, but nonetheless saw me as odd. But teachers were unfair. I remember once getting in trouble because I hid under a desk and refused to come out – the bright lights were hurting my eyes. They only assumed I was naughty/bratty. Even at this young age, I was bullied – I carry a scar on my left arm from when my babysitters’ kids cut it open with a pair of scissors. They often hit me hard and pushed me around, but acted like it was a game.

And then there’s summer camp. My parents often sent me off to those, and initially they were a nightmare(aside from outdoor camps with various adventures – I love the outdoors, and I love adventure). I’ve never been a fan of  soccer, and part of it was due to soccer camp. I was often mistreated and bullied, and got into fights, and the counselors never helped me at all. In camp, everything is blamed on me. Nobody ever actually tried to understand me. I don’t exactly remember how or why things always went downhill, but somehow something always ended up going wrong(story of my life). At camp my counselors were harsh and often rude. I tend to avoid sports in general because of the negative and ableist environment that often encompasses it. People get so caught up with winning (which isn’t bad in and of itself), but will often end up causing others pain in the process. Multiple times have I been the target for verbal and physical abuse because I made a mistake in judgement during a sports game, or couldn’t do something typically or quick enough. I’ve grown greatly in skill since then, but these memories haunt me.

It was around this time, at age 6, that I was diagnosed with ADHD. So now I felt I had something of an explanation for some of my behaviours, like impulsiveness. (Which can also be part of autism.) However, the child psychiatrist I visited assumed I couldn’t be autistic just because I communicated relatively fine. The results were interesting, since many Autistics are mistaken to have ADHD at first (some have both).

Stage 3: Finalizing my diagnosis/Elementary School

I was finally identified as autistic, first with PDD-NOS, later given the official diagnosis of Asperger’s Syndrome (both are now just part of the Autism Spectrum “Disorder” under the DSM-V) at age 7. I was in the second grade at this point, moved to a new home where I live to this day and have a grown fondness for. Elementary school saw many struggles. I was overwhelmed, and socially awkward. Sometimes I’d inadvertently tease other students in ways they didn’t like, or act out, not understanding how to go about making friends. Sometimes my eccentric behaviours or awkward coordination caused me to be made fun of. I expressed my feelings in ways neurotypicals/allistic people(allistic = non-autistic) wouldn’t. Sometimes when I was angry I’d be violent or hurtful. Sometimes when trying to have fun, I would inadvertently act out and hurt someone else. Looking back, sometimes I wonder what had gotten into me at times. Impulse accounts for a lot.

I will always live with regrets. People used to assume I was inherently mean, a bad person. It’s quite different from now, with many saying that I’m one of the nicest/most caring/inspirational/strongest guys they know. Getting to where I was now, being a better person now, was not a smooth or easy journey.

Like some autistic children, I also wandered as a child when things got overwhelming. Or rather, hid. You may have heard the occasional story about an autistic child going missing, only to be located later, sometimes by the police. Police were never involved with me, but my disappearances still alarmed teachers and camp counselors alike. I was often warned that I’d be taken into police custody/get into lots of trouble if I kept disappearing.

Like most autistic people, I also deal with meltdowns. It was more frequent in my childhood; I was frustrated that I seemed to get into fights wherever I went, no matter what I did. I was often bullied or excluded and ridiculed by my peers, and sometimes even older individuals. I was also often overstimulated. Sensory overloads can often be difficult to deal with, especially since I’m prone to motion sickness.

I had friends in elementary school who were also bullied for disabilities they had(such as dyslexia), and one of them actually had to change schools over it. I help victims of bullying whenever I can. I have been bullied both physically and verbally. Yes, I have also been a bully at times in my life, but I have learned from those situations and grown each time. I make efforts to own up. A lot of my ‘acting out’ stemmed from confusion, loneliness, and sensory overload. I always try to apologize to people I have wronged; I am always trying to improve myself as a person correct mistakes. Always. I was an advocate for bullying awareness back then, and will continue to be, particularly in the case of children with disabilities.

I have spent most of my life being told nobody cares about or likes me, or that I have no friends, and this has affected my self-esteem to this day, particularly with mind-numbing paranoia. It can all be traced to this period in my life.

When I was 7, soon after my diagnosis, I made my first autistic friend at a summer camp. Initially I found him strange, not fully understanding myself or autism, but as I started interacting with him more, I felt a connection to him, as though we had something in common that I could not clearly see at the time. One of the beauties of being autistic is an ability to connect with people like you; intuitively understanding and connecting with them. Having other autistic friends is such an empowering thing for any autistic person, and I wish I had met more as I was growing up.

Stage 4: Middle School

Come middle school, things got worse – a lot worse – the sixth grade was one of the worst school years of my life. I was still learning and made mistakes or had outbursts – usually from being overwhelmed or upset  – but this was often a result of classmates antagonizing me. On one occasion, I hit a classmate who broke my ceramic lunch container and rendered my lunch inedible since there were pieces of ceramic inside. I was blamed by the teacher for getting angry and striking back, but nothing was said to them about maybe considering not breaking my lunch containers.

I was also blamed for typical autistic behaviours. This included being accused of giving “dirty looks” because I showed little variation in facial expression. I was traumatized by one of my sixth grade teachers, who would blame me for everything. If I wanted to talk to her or ask her help, she’d accuse me of “stalking” her or wasting her time. If I avoided her(the favourable option), she would scold me for trying to “hide”. Other kids would make fun of me and she would look the other way. She would blame me for my inability to socialize. But the worst part was her forcing me to make eye contact. “LOOK AT ME. LOOK AT ME WHEN I’M TALKING TO YOU.” Most autistic people are made uncomfortable by eye contact, for various reasons. Sensory issues, a feeling of vulnerability, being overwhelmed by the emotions the other person might be feeling (yeah, we do feel empathy, folks), etc. With me it was a combination of all three. I was afraid of facing the brunt of her anger, felt extremely anxious and vulnerable, and experienced sensory pain looking right into her eyes, much like what one would feel from cutting onions. To this day I cannot explain why, but I can’t make eye contact with some people for that reason. (Side note: on the other hand, if I look at her because I want to talk to her, or even in her general direction, she’d accuse me of “staring”. Consistency is all I ask for, folks.) I feel my blood boiling, my heart hurting as I remember this flashing through my head. See, many in my middle school saw autism via the medical model rather than the social/neurodiversity model: a defect, something that needs to be cured, or at least have all the visible signs gone. Much of the therapy and support outside of school I’ve had was helpful, and I am eternally grateful. But we really need to change the way schools handle Autistic people, and deviating from ABA and other cure-based methods would be a good start. Focus on getting the autistic to accept themselves, and accept them as they are.

The sixth grade was when I started to become self-conscious, wondering what made me different from others, why others seemed to be able to socialize so well, and what I was missing. How could I be well-liked? And even if I got the answer, how could I implement it in a place where people have preconceived negative notions of me?

So the sixth grade was absolute hell. It ended with one person in particular, who would remain an enemy throughout middle school, fighting, tripping, getting me in a headlock and telling people the next year that he “beat me up”, while adding his own sensationalized details. Middle school taught me a valuable lesson in fighting back. I used to be a bad fighter and was therefore unable to defend against physical assailants, but starting in grade 7, I improved my combat effectiveness. My attacker from the last day of sixth grade, among others, quickly learned their lessons trying to fight me again. I would also spar and train with some of my friends, most whom were also unpopular and bullied for various reasons. Some of them were also disabled and neurodivergent (meaning their brain works differently from the typical; autism falls into this category). I stood up for them, and also taught them to fight back and fend for themselves against bullies. Note: If you are my friend, and being verbally or physically bullied/abused and want to fight back, I am willing to help. This is, and has always been, and always will be, an essential part of what friendship means to me.

I have always loved music, but didn’t get the chance to express it until grade 7. I was a good singer, even having won a few vocal competitions – but people assumed I wasn’t good, or uninterested, when I joined my middle school choir. To prove them wrong, I sang a song at my middle school’s Spring Concert, which gave me something of a popularity boost, which was nice. People started to realize I was more than just an awkward annoying kid: they now saw me for me, a talented but misunderstood individual who wanted to express himself. It was this year I also started to actively work on changing my public image, so people would consider me a better person (though also not one to pick fights with). It went fairly well, and my social standing generally improved in the eighth grade as well. The last two years of middle school were a lot better, though I did have my share of difficulties then, too.

I learned two important lessons in middle school: one is that if someone targets you, you should fight back instead of standing there and taking it. Authorities can only do so much. Friends can also only do so much. I befriended a person who was severely bullied, and (at the time) too timid to fight back – I fought for him, and eventually his bullies would back down, unwilling to continue mocking him while I was around. In addition, I helped him fight for himself, and he slowly stopped becoming a target.

The other important lesson I learned is that people should not judge others without interacting with them. This wasn’t something I had much trouble with – I’d judge people based on my experiences with them, and their actions – never hearsay. However, in middle school that there were those who had preconceived notions about me from what others said – they were not open to learning what I was really like. I remember seeing social media comments about people I’d never spoken to expressing their distaste for being in my class, which really angered me. And I called them out on it.

Stage 5: High School 

This continued into the ninth grade. By this time I told some people I was Autistic, though most of them hadn’t really heard of what Asperger’s was, so they didn’t really understand anyway. Frustrated, I didn’t bother to bring it up again. Bad mistake. Bad, bad mistake. Because I went to a regional arts program (for music), I didn’t go to my local high school. This was a fresh start, with only a few people from middle school showing up….. who had to screw things up again. They pretended to be friendly with me as we conversed with one other person who just met me- and then they attempted to flee, me unaware of this, and told that person things about me – next thing I knew, this person was no longer comfortable talking to me, and later on did some really rude and unjustifiable things, including saying really rude things to me for no reason, and creating a fake Facebook account to stay anonymous and give me “advice” (mostly telling me I was broken and less for being different, etc.).

Grade nine started off pretty well. I was a nice and kind person, who was a good singer. I also loved Star Wars. Like loved it. Loved it so much, I couldn’t stop talking about my favourite show, Star Wars: The Clone Wars. (Dammit Lucasfilm, why’d you cancel it?)

People talk about their favourite shows all the time, so why not me? I was being nice, trying my best to fit in (and initially it was working rather well). But then people started to see me as weird and annoying, as usual. Initially I was well-liked. My teachers liked me (throughout high school they usually did) and my grades were actually higher, and more representative of my potential (I found it sometimes hard to focus on academics in middle school, hence not getting as good grades, and I do have executive functioning difficulties). But after this short-lived happiness, I was once again a social outcast.  And it went downhill from there. Friends I initially spoke to would ask me to no longer speak with them because it would affect their reputation. People would ignore or avoid me, as though I had measles. Some people would outright be extremely rude. I started to feel bitter, angry, sad, upset, and extremely depressed. Some people thought I was upset for attention. Some people who were there for me would try to “fix” me, telling me to “like things other people my age like”, etc. I was perplexed as to why people could not just accept me for who I am. During this time I came out as autistic to some more of my friends. Some of them were receptive while some of them told me to “deal with it”. But one of my closest friends at this time didn’t believe me. “My mom works with kids with Asperger’s and you’re nothing like them”. She eventually believed me, but never apologized until two years later. Either way, I’ve forgiven them because they’ve gone through a lot themselves and are overall a good person. By the end of the ninth grade, I publicly told everyone the truth, and people started to like me (a bit) better.

The tenth grade was wonderful. Initially I still felt irrelevant, but that soon changed and I started to feel accepted, possibly for the first time in my life. I got along well with most of my friends, and forming friendships I hoped would last a long time. Things were going great until the very end of the school year – when I lost a friend I really cared about. They were, in many ways, similar to me, having been ostracized and excluded in the past, and were unique, different, introverted.  People think I’m “clingy” just because I like to spend time with my friends, and because I care about them a lot. Sometimes I may come off that way because I’m afraid of losing those I do have. Allistic (non-autistic) individuals sometimes think the way we show kindness and care is weird. Maybe it’s because we’re actually genuine when we say nice things about others. Either way, this hurt a lot. I felt like I knew someone on my wavelength, for like me, they experienced social exclusion, and were authentic, kind, and also had difficulties with social interaction. Based on what I know about them, they may even have been Autistic themselves without being aware of it, but that’s  pure speculation on my part. But in the end I’d lost them.

During the ninth grade, there was a time when I felt abandoned, isolated, and severely depressed. This happened again during the summer after grade 10, but a lot worse. Worse still, when the school year rolled around. Meltdowns were frequent. Moreover, I started to become withdrawn. I was angry with myself, thinking I was defective for being a clingy, socially awkward person. For caring too much. For being Autistic. I exhibited a lot of anger towards the rest of the world. I felt it was a cruel place where people who were disadvantaged, disabled, or otherwise different, were treated like crap and had to deal with it. I hated the human race for not standing together, instead dividing each other and excluding individuals. I thought it was extremely unfair that some people get to be popular while others struggle simply to be noticed and liked. All I’d ever wanted was some acknowledgement as a person, some form of recognition and respect. Like all individuals, I want friends to be happy with, who care about me.

As I started to have these thoughts, I took to activism. It was the one thing that took the pain out of my mind – I have always been a good writer, and enjoy discussing issues I care about. Some of these included the harms of the anti-science movement, and autism acceptance.  Unfortunately, radical, loud activists tend not to be liked by people. And so, I noticed the amount of friends I had dropping steadily. People I used to be close with would no longer talk to me, and if I tried interacting with them, they usually brushed me off. This hurts a lot, and angers me because these are people who should have known and understand my motivations. I’d been through a lot and was shaken by much of it. Therefore, it isn’t surprising that I’d be radical about things I care about. I only wish people would be more understanding of why I do what I do.

Stage 6: Approaching Adulthood

Present day, I’ve gotten over much of my struggles in the eleventh grade. However, I still feel unrecognized to a certain degree. I still deal with feelings of abandonment, paranoia, worthlessness, fear, and hopelessness. It is hard to undo a lifetime of being told people don’t like or care about you. I hope to make things better by participating in initiatives for autism acceptance, being a kinder and more persuasive person, improving my people skills, and growing as a person. I do feel I have come a long way, but I still have a long way to go. I regret losing certain friends in the past who used to be close to me. I still feel angry, hurt, and upset when people who have never truly tried to understand me are rude to me, or judge me just because I’m Autistic. I feel confused and upset when I think a person is my friend, only to find out they’ve blocked me on some form of social media.

There was a time (mostly around the eleventh grade) when I wished I could be “cured” of my autism. This, of course, is impossible: autism is an integral part of who I am.I struggled with suicidal thoughts during this time as well; I had throughout high school. During my time in despair, a teacher and wonderful parent of two autistic children, whom I had collaborated with before for autism acceptance initiatives, showed me that self-hatred was wrong.  She reminded me that I have many amazing qualities, just both as her kids do. I also did a lot of meditation and looked inward into my very being – and found that I liked being autistic after all. If I wasn’t Autistic, I would not love the things I love, enjoy the things I enjoy, or even have many of the skills and talents that I do. I stopped seeing myself as less and started seeing myself as adequate and powerful.

Changing the way I think of autism has helped me a lot – and I want people to see that “disability” isn’t a bad word, nor does it prevent you from achieving great things – especially when it’s largely society that disables you. I now do have friends whom I feel secure with, knowing I will never lose them. I care for them endlessly and always will.

“Often, the biggest disability a person with autism experiences is discrimination.” -Michael McCreary, an Autistic stand-up comedian

Advocacy, and looking for ways to support Autistic people has become a big part of my life. I want to change the way people see autism, for the better. I want to help create a world in which Autistic people are raised without discrimination, or being told they have a disorder. I will be entering university and studying psychology (with a side of music), and I hope to use my psychology degree to help with these goals. I shall let it be known that I am autistic and proud.

“Nobody said being autistic is easy. But it is worth it. We’re okay. We love and deserve to be loved.” -Kassiane Sibley, an iconic Autistic neurodiversity activist and inventor of the term “neurodivergent”

 

 

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