Autism: Journey to Discovering the Neurodiversity Movement

A Spoken Word Poem by The Autistinquisitor (real name has been removed for the sake of anonymity)

From when I was very young, I knew I was different. I didn’t pay much heed though. I was satisfied with who I was, carefree, happy. From time to time I did things that were foolish, but it shouldn’t be a big deal; everyone makes mistakes, at least that’s how I feel. I was adventurous, explorative, excited, wanted to see the world. But sometimes I was also in my own world. In synchronization with myself, my mind; who knew what wonders I could find? But little did I know, I would be left behind. My peers? They weren’t very kind.

Preschool, I didn’t talk to people much, just stare out the window. The world seemed to move real slow. Come moving to Canada; there still wasn’t much for me to wish. In kindergarten, I’d rather have conversations with fish. I was small, and parts of the world didn’t make much sense; a lot of things, the sounds, the lights, were very intense. I was sometimes too mellow, sometimes too hyper; I would start to notice something the teachers would try to decipher.

In those days, that age, the kids and I were mostly on the same page. Young, overwhelmed, innocent, they were mostly nice, as I could tell, and I fit in rather well… yet some still saw beyond my veil, and then begun the start of a darker tale. At four or five years old; I can’t remember very clear. A fellow classmate and kindergartener cut my left arm with a pair of scissors. I didn’t so much as shed a tear. The bleeding didn’t go too far… but to this day, I’m left with a scar.

Going up the scale, through elementary; my social skills were barely rudimentary. I was ostracized, disliked; virtually friendless. To this day, I hardly process the true meaning of friendship as I do not feel I have truly experienced it. The sixth grade, I asked myself; why am I so different? What do other have that I don’t? What makes social interaction among other things so easy for them? The sixth grade was when I felt my difference first; among the middle school pre-teen years, this would have qualified for worst. Seventh grade, I started to feel more worth, but it was hardly a rebirth. Grade 8, a twist of fate; I go to a high school for the arts. My talents shone through, and won some hearts.

Ninth grade, starts off great. Ninth grade, I get more hate. People think I’m weird. Suddenly I become feared. My grades start to slip, my happiness starts to flip. I start to see my differences put me apart, and that’s when I decide it’s time for a new start: time to retell my story, with the truth.

I was determined to be on the autism spectrum at around age 7. Back then it was known as Asperger’s Syndrome, though the biggest difference is really just the spelling. People say, “you don’t look autistic! You must be high functioning!”. Well, some days I may be. Some days I’m not. My ability to do things is hardly in stasis. Believe it or not, I’m a living being that grows, develops, and changes on a daily basis like any other individual.

When I come forward with the truth, respect is born out of shade; yet eventually after the initial surprise, things start to fade. Yet now I feel more secure not hiding myself; there is a word for what I feel now: free. No longer trapped. Once again, I try to enjoy being me.

Tenth grade, starts off rough; by the middle, I feel more tough. Self-doubt removed; good things seem to stay; at this point I was really in my heyday. Little do I know, this would come crashing down, my smile would quickly fade to beyond a frown. Ecstatic laughter suddenly becomes the painful sensation of an incoming meltdown. Despite my attempts to be myself, yet also blend; in the end I lose a friend. Push has always come to shove; I feel I lost my capacity to love. Despite moments of weakness, it took this long; now I feel I’m no longer strong. I’m losing the fight; I feel I’m in twilight. In it, are two emotions: vindictive anger, and self-hatred. Why was I born this way? Is this how I will always stay? Why me? Why am I broken? What the hell is wrong with me?

The rage on the other hand, went towards others; society itself, fellow sisters and brothers. I saw the way people like me were treated. Seeing it made my blood boil, my mind get heated. Yet I had no choice but to stay seated. We deserved better.

I would spend a while looking for ways I could possibly fix myself. It was futile, for I was never broken.

Twelfth grade; a shift was made. I discovered a word that changed my life: Neurodiversity.

Neurodiversity; the diversity of brains and minds. Human thought comes in shapes of all kinds. Neurodiversity is a verifiable fact. Everyone’s brains slightly differ; some more than others, but nobody’s base brain is truly wrong; they are intact. People act like being Autistic and being healthy are mutually exclusive. They are not. But if we were treated better, we may have a better shot.

Looking at life through the lens of neurodiversity, we see a new paradigm. The old way is outdated, harmful, and gone way past its’ time. Looking at diverse brains through pathology does no good; it just made me feel bad about myself; where I stood. When you look all around, you see people trying to drive Autistics to the ground. People will risk their kids dying out of fear they turn out like me. Is that really what so many people see? I look at how society views autism and I’m torn, as people funnel six-figure money to prevent those like me from being born.

Neurodiversity is the same as cultural, ethnic diversity and all other kinds. Neurological minorities are subject to the same dynamics of power and oppression that affect other demographics. It is intersectional. Yet what is done to Autistic people would be inhumane or criminal done to anyone else.  This needs to change.

My being Autistic is as much a part of my humanity as my being a person of color, as being an Indian. Autism is not a way of being broken. Being Autistic is not easy, but it is still worth it in its’ own way. I don’t need to live a normal life to live a worthwhile one. For all the things, I struggle with, there are things I can excel in. I am different, but not less. There is no default or right human mind, brain, or body. Through embracing the neurodiversity paradigm, we can create an inclusive, accessible world that embraces the entire spectrum of humanity.

 

 

On the Border: A New Diagnosis, Part 1

Introduction: When I first started this blog, I made two posts detailing my experiences growing up. Having become a little too uncomfortable with them, I removed both posts, although there is a slight possibility of editing and reposting them later. However, there are some experiences that I need to write down, and would like to share in hopes that it brings understanding to others. I initially had not planned to split this into two parts, but as I wrote, I realized I had a lot more to cover and decided it was for the best.

Content Note: This covers receiving a diagnosis as well as an overview of difficult life experiences, including bullying, violence, social abandonment, abuse, and trauma. It also briefly touches upon suicidal ideation.

For most of my life, I grew up with a diagnosis of Autism (then Asperger’s), and ADHD. I had come to terms with the fact that I was multiply disabled, and had endured my fair share of struggles; some out of my personal weaknesses, but many because of social attitudes. But little did I know until I read about it about a few years ago, there was another neurodivergence, a disability of a psychological nature, often brought on by trauma – that described me quite well. And about a week ago, I was told I had it. It was not very surprising to me at all.

Like most Autistic people, I had many traumatic experiences growing up. I still have flashbacks of meltdowns in my childhood. Of being attacked, betrayed, bullied, or ignored. I was not perfect either; many of my flashbacks also consisted of me doing things I was not proud of. We all make mistakes. Yet I felt as though what was done to me was a lot worse than anything I could have dished out. Possibly because I was only one person, and things done to me came from many angles.

By now, as an adult, I have learned a lot more about friendships and interactions compared to what I knew as a child, and adolescent. Moreover, I am also a lot more confident.

As a child, I was obviously socially awkward, or at least viewed as such by the majority of neurotypicals I knew. I had a few friends, some of whom I suspect may be Autistic as well, or were otherwise neurodivergent. I seemed to get along more with other social outcasts than I did with most people. I was okay with that.

The social world was quite confusing for me, though. Sometimes I would do things that I realized later were considered inappropriate, or wrong. I would learn from such experiences and not do it again. Sometimes I would imitate what I saw others doing in an attempt to gain popularity, however that too, often backfired. No matter what, I was seen as weird or awkward. I found that acting out sometimes gained me attention, but it was negative. Sometimes when I look back at things I did, I can’t help but wonder why I did it. I guess it’s a normal experience, but to me it is no less mortifying or upsetting, as I recriminate various scenarios to see what I could have done differently to have not been treated or viewed negatively. I realize now that a number of factors could have contributed to certain negative ways I reacted – sensory confusion, aggravation, copying the actions of others, trying to gain attention – however, I also realize to an extent that I may be going a little too hard on myself. Yes, I did make mistakes. But so did many others. As an Autistic child I was naturally labeled a troublemaker and someone to blame things on.  Nothing I did in elementary school after-school programs warranted parents ganging up on the managers to have me removed for being a “troubled kid”, or for parents to tell their kids that I’m “challenged” and that they should take pity on me.

More importantly, a lot of the ways I acted were natural Autistic ways of expression. Vocal stims in class. Acting out. Having a few intense interests and following them even while being mocked. And having meltdowns. And sometimes I was bullied just for not following the norm, or for making simple mistakes, such as when playing sports – mistakes that had anyone else made, they’d probably be let off the hook more easily than me.

And I often did good things as well. Helped others. Stood up for people who were being bullied or excluded. I was good at heart, even if others didn’t always see it.

And while I definitely did things I regret, and while I may have been violent or bitter at times, it’s something that’s bound to happen to someone who was stabbed in the arm by a pair of scissors at age five by his babysitter’s children and beaten multiple times because they thought he acted “weird”.

Though I never would have admitted it a year and a half ago, I was definitely abused as a child. Only some of the time would it actually be physical beatings. Other times it would be emotional: left out, socially rejected. I was often labeled “friendless” by others. Lonely, a loser, an outcast. Someone nobody really cared about. People would avoid me, mock me, talk and whisper about me, sometimes attack me. Sometimes I would fight back, yet the blame was usually always placed upon me. Sometimes rightfully so, but usually not. Meltdowns were often punished.

I was also bullied a lot. In elementary school, it often took place at the hands of groups: perhaps gangs; groups of people who would name-call, harass, attack me, and sometimes lie to teachers claiming I did bad things to them, thus getting me in more trouble.

I knew I was Autistic during this time, this young in age, but I didn’t tell anyone; out of fear or embarrassment, I cannot remember.

Either way, back then it hadn’t bothered me as much. I always knew I was different. I just got along however best I could, knowing I would make it through in the end somehow. This turned out to be true, but at a price. The older I got, the more painful my differences became. I started to want to be closer with certain people but wasn’t sure how to approach it. Sometimes I did make friends only to have them leave later.

By the time I was in middle school, I was getting fed up. I also started to hurt more from the isolation. Started to ask myself why I was different – why others seemed to get along easier than I did. Teachers and others alike started to gang up on me – often unfairly punishing my Autistic traits. In addition, I only had a few friends, and my friendships with them were bumpy. In addition to this, others would often talk about me visibly, insult me, or sometimes even physically attack me, however if I chose to defend myself, or fight back, I would be the one getting in trouble.

The sixth grade ended with me getting into a fight. Back then I wasn’t that strong, but I could do a few things. However, my opponent, a bully who had teased and insulted me repeatedly, broke one of the rules of our engagement and tripped me, then held me down. This humiliation was the last straw. From then on, I vowed that anyone who ever caused me any pain and suffering would pay for it. I became a better fighter, and entered the seventh grade with that confidence.

I got similarly bullied then, but this time I was ready for it, and stood up. Not only that; I helped other similarly marginalized kids stand up and fight back. This may be an unpopular opinion, but I truly believe that if somebody is causing you pain, bullying you, or otherwise bringing you harm, it is fully within your right to fight back. In some cases, contrary to popular belief, it can dissuade them from persisting to trouble you. Bullies are interested in victims, not opponents. Of course, some people cannot fight back, which is okay. That just makes it more imperative for those who can to lend a hand. Those who claim to be allies but wouldn’t actually stick their necks out beyond their comfort zone to help whomever they claim to ally with; aren’t.

As a side note, I was also learning music for over four years at this point; talented with the piano and the voice. After years of nervousness, I put this talent on full display at a school concert, and then became ever-so-briefly popular. I liked it, although when I tried to further interact with the people who seemed to like me, I was once again pushed away.

At this point, I had also become a lot more openly kind, and less abrasive like I was in the past. Thus, by the time I entered high school I was a lot more well-liked than I once was. And so for once, I felt emotionally secure. This didn’t last.

I played things carefully in high school, but things seemed to go wrong at every turn. I struggled to keep friends for long periods of time, aside from a minute few. This time again, my Autistic traits were the contributing factor. People didn’t like a guy who was eccentric, talked about his few interests frequently, and was all-around awkward. And the lapse in confidence that resulted from this took a toll on me, and my performance levels dropped; something common that happens to Autistics who face trauma.

Eventually, I finally came out as Autistic. It brought understanding and acceptance, if temporarily. People understood that I wasn’t just choosing to be awkward; that all my idiosyncracies, as well as my talents were a result of a brain wired in a certain way; a sensory system that was configured in a way that made me see the world in a different way; that sometimes made things hard, but made it all the more worth it, and also gave me many skills and talents; some greater than others.

It was also around this time, however, that I felt myself breaking. I always felt excluded, lonely, and because of how I was treated, even inferior. I started to wonder if I had any real purpose in this world. I felt like I was expendable and not really worth anything to anyone. I had thought about suicide before, but this was the first time I really started to consider it. I started to feel as though I didn’t have a future, that my life was meant to end soon, likely by suicide. I started to obsessively think about it, and tried to learn more about it: different methods, as well as how suicide affected others. All in preparation for a scenario in which I may choose to leave the world on my terms.

By the tenth grade I was better known; better liked. My popularity had spiked, and I felt like I finally belonged. However, by this time I was paranoid. I was always afraid of losing people close to me, people I cared about. Sometimes I felt (and often was) unnoticed by others, and the feelings of inadequacy were still omnipresent. Only for a certain period of time did these feelings subside. I had started to bond with more people and make some truly great connections, and some really close friends. However, the paranoia stuck with me. And thus, my fear of losing my beloved friends led to me being rash and impulsive, terrified that my friends would leave me; desperately clinging on.

This, however, led certain close friends of mine to alienate me. All of a sudden, my intense feelings of sadness, of grief, of pain and anger, of loss, and of wanting to end my life, struck me – all at once. I spent the entirety of the next year in a very dark, angry place. I started to blame my status as a social outcast on being Autistic, and sought to find ways to “cure” it were it ever to be possible. During this time I unintentionally made myself a bit of a social recluse. Some of my friends noticed drastic changes to my personality, but abandoned me rather than find out or help. For a time, my suicidal ideation had worried people as well, although I did ultimately seek some assistance for that, with some difficulty.

By the time the last year of high school rolled around, I was tired. Beaten, battered, and shaken by my experiences of the world. I realized I felt more lonely than ever, and that so many who were once close friends of mine were now gone from my life; possibly forever. I felt lonely, forgotten, abandoned, and worthless.

Also around the eleventh grade, I had started to take up activism as a way to cope. The idea to become an Autistic activist actually came from a therapist I was seeing, and at first I started small, but ultimately went to town with it. In the twelfth grade I became ambitious and decided to make my activism grow; being an advocate, especially for my community, gave me a sense of purpose I didn’t have before. It was also an excellent way to cope with depression, and the feelings of worthlessness I often had. When you are making a difference, it is hard to feel like you’re not worth anything.

In the twelfth grade, I spoke to a parent of an Autistic child who was a teacher at my school, who saw potential in me. She introduced me to the term neurodiversity, and that ultimately led to me discovering the neurodiversity movement. Albeit with a bumpy start, I discovered the greater Autistic community and finally felt a true purpose and sense of belonging.

There was another emotion that drove me: anger. I felt a bitter anger at the world for how I was treated growing up. I also felt anger at how I saw society speak of me and my fellow Autistics. It made my blood boil. It made me act out of impulse, when it came to calling people out, both on and offline. As I learned the importance of intersectionality, my impulsive aggression reduced.

I fought for what I believed in. And I also started making new friends, and regained a few old lost friendships, though not many. Around this time I made one close friend who would become the best friend I’d ever had. Before this, I do not think I ever truly experienced what such a close friendship was like. It was beautiful, but it was also terrifying. The thought of losing this was unbearable, yet it always stayed at the back of my head. It was intrusive; the slightest discrepancy would raise a plethora of questions about whether I was really worth anything to my best friend at all. In addition, complications with a friend of that friend seeming to “compete” with me for their friendship made this anxiety worse.

I took in all of this, and thus graduating from high school was a struggle for me. By this time I experienced a phenomenon known as Autistic Burnout – having been drained almost dry of emotional and mental energy, it was hard to do well academically, despite being more than capable. In addition, I was terrified – of losing my friends, of my future, of ending up a failure. I was so afraid I sometimes wanted to die.

It was also around the twelfth grade that I first came across the term for a type of personality disorder that perfectly described me: my recklessness, my suicidal ideation, and my constant terror of losing my friends. It was a term I strongly suspected myself of having, but was only officially diagnosed to have the traits of such a week prior to writing this:

Borderline Personality Disorder.

 

 

Stim-Toys: The Potential for Innovation

One of the most commonly discussed characteristics of Autistic people is stimming. Autistic people talk about what enjoyment they get out of it, and what kind of stims they love. Behaviourists talk about ways to extinguish it. Parents either consider it troubling or perplexing. In Autistic culture, stims are shared and revered as something to be celebrated and accepted.

Many are in agreement that visible or unique stims are one of the easiest ways to identify if somebody is Autistic. But what exactly are stims, and why are they so important – and so controversial?

Let’s start with the basic definition:

“Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autism.”

This definition was taken from Wikipedia. As with all definitions on Wikipedia, though, this is partially true – but incomplete. It is true that people with developmental disabilities, including Autistics, often stim. But it is also true that people without developmental disabilities stim.

If you consider what truly constitutes stimming – repetitive motions, and actions meant to stimulate the senses(self-stimulation), then it becomes clear that everyone stims. Go to your local sports stadium, or a concert of your favourite modern-day musician, or even a local party, and you will hear lots of cheering and shouts such as “Woo-hoo!” or “Yeeeeeaaaaah!” You will see people dancing to music by fist-pumping, or waving hands from side to side.

Now, go into your average classroom – and observe the students carefully. You will start to see students scribbling, bouncing their legs, tapping their fingers on their desk, sometimes even humming melodies to themselves as they work. Most of the time these actions are merely considered fidgeting. But fidgeting is also a form of stimming: you are stimulating your senses to help you focus on the task at hand, or keep your body occupied.

It is a common assumption that Autistics stim more than others; but the assumption exists because we stim in unusual, unique, or greater ways. Autistic brains and nervous systems are wired differently than the average individual, which may result in unique forms of movement. Autistic people have a more intense and complex sensory experience of the world, and we also tend to have minds that focus in really deeply on certain things, perhaps as a result of our acute sensory perception. When something captures our sense, we focus in on it intensely. This is sometimes seen as a bad thing, but in my view, can almost always be turned into something useful. Either way, it means that we may need to stim more often in order to focus our minds or self-regulate.

The Autistic community has long advocated for stimming to be accepted and normalized. We have even recommended the usage of objects, toys, or items used for stimming. For years, these calls to action went unnoticed. Then suddenly, almost out of the blue, they came to fruition in the form of a fad: fidget spinners.

Suddenly, people who needed to stim or otherwise move for a variety of reasons – usually neurodivergent people – Autistics, people diagnosed with ADHD, kinesthetic/kinetic learners, people facing high levels of stress or anxiety – found a cheaply produced commercial item that they could use to help them cope with their need to fidget in order to focus or regulate their feelings.

However, like with every new invention, fidget spinners became a controversy of their own. Because of how popular they were suddenly becoming, neurotypical people also joined in, buying them en masse. Ordinarily, this would not be seen as a problem. But while everybody stims or fidgets, not everybody depends on it to a high degree. So the result is that neurotypical children often play with stim toys in ways they weren’t meant to be used, sometimes deliberately disrupting others while kids who really need them are using them out of necessity. This is, not unexpectedly, followed by some teachers and schools starting to resent fidget spinners, sometimes even calling to have them banned from classrooms. This, in despite of the benefits toward neurodivergent or disabled children.

When this realization dawned upon the Autistic community, along with other neurodivergent communities, and the broader social justice and progressive communities (at least those who care about neurodiversity or disability rights), it sparked outrage. And the outrage was justified. The Autistic community that had advocated relentlessly for years for the right to openly stim with or without items, and members of other neurological minority groups or with other disabilities were being negatively affected, being unable to access an item designed to help them in an educational environment thanks to some people abusing its’ usage.

There was, however, one flaw in this line of thinking. Yes, it is true that stim toys primarily benefit a very specific group of people. That Autistics advocated for it primarily, and are one of the groups that need it most. But, suppose fidget spinners were marketed specifically for us rather than for everybody. There would be far less customers, and thus less of an incentive to produce as much. In addition, as Autistic activist Kassiane noted, they would likely be categorized as medical rather than under ordinary commercial goods, and that may increase the price even further.

This is in addition to the fact that, in the end, everybody stims, and commercializing fidget spinners and similar gadgets so that they become available to the general population ultimately serves one of the Autistic community’s ultimate goals: to normalize stimming, thus demonstrating that everybody does it, regardless of who may need it more.

So, this leads to a dilemma: we cannot stop people from misusing fidget spinners or stem their production to only serve us, and we may not be able to stop fidget spinners from not being permitted in classrooms unless we were to massively protest for them to be allowed. So, what is to be done?

There is a third option, one that some Autistics like myself have used all our lives, and one that most of us could easily learn: creativity and innovation. Among the Autistic community, and even the larger population, there are infinite ways to stim. Some common ones include flapping or rocking. Others can include running, jumping, or spinning. My personal favourite stims include running from place to place, pacing, or swinging objects around. When the needs of other neurodivergent people are taken into context, another path becomes clear: why rely on fidget spinners when you can construct your own stim toys? They don’t even have to be built so much as modified. Or one can even use everyday items as stim toys, the way I would commonly utilize rulers or meter sticks.

In my opinion, this approach will benefit  everyone. There is no “right” way to stim, and there certainly does not need to be only one kind of stim or fidget toy that everyone has to use. Everybody stims slightly differently than others. Therefore, it makes sense that we may use different items to do it. Some may use sticks. Some may use squeeze-toys. Some may use rulers, or pencils, as I often do. Or, in some cases, a person can take the time and effort to build and customize their own stim toys in a way that suits them and is optimized for their specific needs. For some people, this will make stimming more meaningful and helpful to them, as they are doing it using their very own creation.

I currently use impromptu stimming tools, and am in the process of building some of my own. I find that this approach has helped me far more than any commercialized fidget product ever could, although I do have an interest in trying out a spinner just to see what it feels like.

In short? Stim toys can be improvised, or constructed. Building them may not be for everyone, but for those who are willing and able? It could be the perfect option. There is no need to rely solely on one specific product, when virtually any item at all can be used for stimming, provided it is safe.

By all means,  if you are most comfortable with a fidget spinner, buy one. Obtain as many as you desire. However, the potential for innovation with stim toys should not be overlooked. We may well end up creating a brighter future for Autistics and other neurodivergent people around the world.

 

 

 

BADD 2017: The Stigma Is the Problem, Not the Label

Foreword: This was a post I had intended to write a year ago, but figured it would make good material for BADD(Blogging Against Disablism Day) the following year. This post covers an issue I have personal experience dealing with, and it intersects with my previous post regarding identity-first language in many ways, given that many discourage it simply because it is supposedly a “label”. I know of parents who do not disclose their child’s disability to them out of fear that they label will “hold them back”. I intend to help dismantle this belief by demonstrating that stigma is to blame.

I include a lot of links here, mostly to works of other Autistic/disabled people. Most of these links are there for people who are new to certain terms, such as “inspiration porn”, “neurodivergence”, or “Autistic culture”. Others are specific examples of how the ‘Autistic’ label has empowered and helped people, and how the lack of such a label has done more harm than good. 

Disclaimer: While the focus of this post is on autism, it can be applies to other neurominorities and disabilities too. 

“The biggest disability is a bad attitude.”

“Labels are for cans, not people.”

“Don’t call yourself Autistic/Disabled/etc.”

How many times have you heard quotes like these, which reek of inspiration porn?

When parents have newly diagnosed Autistic children, they tend to react in various ways. Some good, others bad. Some parents, however, decide to hide the diagnosis from the child, specifically preventing them from learning of it as they grow up.

They justify this by stating that they have an aversion to “labels”. They see autism as a label that will hold their child back. They assume that if their child knows they’re Autistic, it will prevent them from doing their best, and give them a self-defeatist attitude. They believe that if their child never learns that they are Autistic, they will be able to do whatever they want in life without being held back.

It is likely that parents who take this approach with their kids, like many non-Autistic parents of Autistic children, are completely unaware of Autistic culture or the neurodiversity paradigm.

At face value, this seems noble. However, in withholding something that is an essential part of who they are, these parents are doing more harm than good. I would go so far as to call it abusive. Aside from the fact that people have a right to know such information about themselves, their child may require support and accommodations they will likely never get. (After all, if the child is receiving accommodations, they will eventually find out why.) In an attempt to give their child a better life, this will only make it all the more difficult.

Additionally, it is a huge myth that we suffer or do “worse” when we know we’re Autistic. Autistic people actually suffer far more when we do not know – many undiagnosed Autistics are endlessly bullied, abused, and often acquire psychiatric disabilities as a response to this trauma, from depression and anxiety to PTSD. In addition, Autistic people, including myself, as we grow older, often become painfully aware that we are “different”. We see things differently. We feel things more intensely. We develop certain interests and focus on them, which others might find odd, and mock us for. We move in ways that seem unusual to non-autistic people, or have sensory needs that differ – such as being extra sensitive to bright lights and loud sounds, or liking certain sensations so much we actively seek them. People take notice of these things, and we are often singled out for it. This often leads us to feel isolated, or othered(this link leads to a video; for the transcript click here).

Sadly, the world as we know it is still not very friendly to Autistic people. It is often very disabling to us, and without being accepted and accommodated, unidentified Autistic individuals can tremendously suffer. Some people need accommodations in order to succeed, and this requires them to be identified as Autistic. It does not connotate that they are broken, ill, or that they need “fixing”, but it allows them to receive  the support and accommodations that they need. There is nothing shameful about being disabled – disabled individuals are still worthy as they are, with worthy lives, and can still accomplish great things, especially when appropriately accommodated. The disability is not the problem – accessibility is.

In addition, labels are not inherently bad. They serve many purposes and are inevitable parts of our society. They work as tools, or as identifiers. We may all be human beings, but humans, like all species, are diverse, and this diversity is our strength. ‘Autistic’ as a label is another aspect of my identity, just like my ethnicity and culture.

Labels can be a source of pride. They can be empowering. They were empowering during the women’s rights movement, the civil rights movement, the LGBT rights movement, and they will be empowering during the neurodiversity movement.

There are countless examples of Autistic individuals embracing the label and being empowered by it. Kirsten Lindsmith describes it here, fellow Autistic activist and founder of the Ask an Autistic YouTube series Amythest Schaber(Neurowonderful), who was linked above, describes their experience here.

People often justify their aversion to ‘Autistic’ as an identification label because of the negative connotations associated with it – but this is hardly the fault of autism. Rather, it is because of the connotations themselves – the stigma – that is at fault. Fight to end the stigma, and people will be able to proudly identify as Autistic without reservation, and easily get the accommodations they require.

I knew I was Autistic since I was a young child – and was fortunate to receive accommodations in school (though I still had some issues with accessibility and unfair treatment). Not having thought of it much, there were times when people would exclude, disrespect, or bully me due because of my neurodivergence, whether they were aware I’m Autistic or not. Ultimately, this resulted in a period I spent in self-loathing, hating who I was and wishing I was born “normal”. One could say that I was held back by my label, but this would be misrepresentative. I was held back because I was taught that my ‘label’ was wrong, that my disability was something medically and morally broken inside me, rather than limitations imposed by a disabling society. I was held back by stigma, and by the lack of understanding and acceptance, not the label.

Of course there are some labels which are undoubtedly bad and shouldn’t be used – functioning labels, for one, which are inaccurate and harm Autistic people. Or labeling autism as an illness, which results in people trying to “fix” Autistic people rather than accommodating them, and results in Autistic people becoming self-loathing. However, this does not mean that all labels are bad. You can embrace and utilize good or neutral labels while discarding bad or harmful ones. It is just important to remember to differentiate between truly bad labels, and situations where the stigma rather than the label is the real issue.

To any non-Autistic parents of Autistic children reading this, always let your kids know they’re Autistic. It is part of who they are, and they deserve to know anything and everything about them. However, in doing so, you don’t have to let them soak up negative ideas either. Parents who fear the ‘autism label’ often buy into the tragedy narrative so common to autism. You don’t have to. Reject the idea that your child’s autism is a disease or tragedy. Accept it and celebrate it as something that makes them unique, and is part of who they are. Support them, and accommodate their needs. Encourage them to be themselves, and to be empowered. Embrace the neurodiversity paradigm, and encourage others to as well, and in doing so you will help create a society that is both accessible and accepting to people of all brains and minds, Autistic or otherwise.

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

Disclaimer: Some peoples’ initial impression may be that I’m saying Autism is not a disability and that it’s all easy. This is untrue. I don’t believe autism is a disorder, but I do consider it a disability. This is because I see disability under the social model. That is: a social construct caused by society being incompatible with the brains and bodies of certain individuals. Society can be disabling toward Autistic people, but it has been demonstrated many times that when we tweak it a bit to make it more enabling, Autistics thrive. We are skilled, and we deserve to be given the opportunity to grow, develop, and leave a mark on the world however we choose. The medical model of disability limits us, and disempowers us by suggesting we are broken or incomplete, and in need of fixing. This is not the answer; to help Autistic people we need to break this pattern.

 

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.