Autistic April Survival Guide: A Call to Action, and More

This is a message directed to all members of the Autistic Community. Note how I use the term “Autistic”, and not “Autism”. When I refer to the Autistic Community, there is a simple criterion one must fit to be a part of it: you must be Autistic.

This is meant to be a survival guide, a call to action, a sandbox of ideas, and more. It is meant to bring comfort, but also amusement and joy, in a month where we are often overwhelmed with stress, negativity, and fear.

 

Another year, another April. I think we’re all used to it by now, but we really shouldn’t be. At first glance, you may think the puzzle pieces and blue lights that signify “awareness” are somehow great. As the Autistic community continues to push toward acceptance and the neurodiversity paradigm, those who oppose it adjust their tactics accordingly, sometimes attempting to hide their true colours. They mask their ableism, and their desire for a world where we no longer exist.

Yet past the headlines and clickbait, what we really see is a horror show. This horror is not Autism, but peoples’ reactions to it. Tragedy. Epidemic. Disaster. Crisis. Before April 2018 even started, articles are already pouring, of people referring to their Autistic children as burdens, and alarmist rhetoric about how the number of us are supposedly increasing. The past 12 months have been filled with ableism and anti-autistic sentiment, from “To Siri With Love” to “Autism Uncensored”.

 

There is much more that can be said about the rhetoric in April, but other blogs have covered that adequately. My question is: how do we deal with it?

 

It’s heartbreaking that in a month where we are theoretically supposed to be accepted and loved, we are instead feared and further ostracized. It is appalling and deplorable that Autistics are sometimes so traumatized or afraid,  we dread the thought of leaving our homes, with some of us going into hiding, even online.

“Awareness” turns into “beware-ness”: we exist, and that is scary and tragic. People are aware of Autism, but that doesn’t mean they understand it. Often, it is quite the opposite, especially in a culture dominated by neurotypicals and the pathology paradigm. Many of us get overwhelmed by the hate and fall apart or become reclusive. Sometimes it’s necessary. We need to take care of ourselves first, long before we can protest the anti-autistic vitriol flowing through April. But the two do not have to be mutually exclusive at all.

 

On self-care:

There are many “self-care” guides for Autistic and non-autistic individuals. However, many are either generic or unhelpful. In some cases, counterproductive. My view on self-care(for anyone), on the other hand, is much simpler: do what you love, and find what makes you happy. For Autistics, this can mean focusing on things that interest you; your passions. Or what non-autistics refer to as our “special interests”.

Our special interests are frequently referred to as “weird”, “unhealthy”, “obsessive”, or other derogatory terms meant to pathologize our existence. And I say, to hell with that. Those are words meant to oppress us, to prevent us from enjoying things as well as we do. Our interests bring us joy, and oftentimes end up highlighting our skills. They bring out the best in us, as they do with most people. And we must use that.

 

Self-care is not one concrete thing and making yourself feel better and happier is also not a concrete thing. It varies from individual to individual, and it is important to find whatever it is that makes you happy and do it.

 

When it comes to immersing yourself in your interests and passions, it leads into the other part of this survival guide: how you can turn self-care into a weapon of protest. Particularly during this month, I will openly speak about my interests and passions, no matter how unusual. We are often discouraged from doing so, lest we come off as “odd”. We are taught to be ashamed of having intense passions and interests.

“Awareness” has contributed to this. But it doesn’t have to stop us. On the contrary, focusing on our passions and special interests is, in my eyes, a double-score: we get to make ourselves happier by thinking about and doing what we love. And it in and of itself is a form of protest.

 

“Respect existence or expect resistance.”

This quote sums up my survival guide for “awareness” rhetoric throughout April. For all the hordes of people proudly displaying their desire for a world where we don’t exist, the best way to protest that is to be ourselves wholly and without compromise. It is hard, but it is worth doing. Simply being openly Autistic is in and of itself an act of resistance. We have been oppressed for long enough, and it is time to take a stand. We were never broken, and we will not go away for the convenience of others.

 

We are often forced to try to be more like allistics, to be someone we are not. That must end. As some would say, “living well is the best revenge”. If we can show people that despite all the hardships and struggles we face, we are capable of being happy and thriving, we can be the living defiance of the narrative that being Autistic is an all-out tragedy. We can display parts of us that we do like. In the process, we can wind up frustrating those who express anti-autistic sentiment.

 

There is another way we can protest simply by being ourselves: stimming… openly.

I have written about this before. Stimming is a universal trait within multiple species. Autistics may need to stim more due to a complex sensory perception, and the need to direct our focus. Stimming is something that is supposed to be both helpful, and a way to express ourselves through movement. And yet, it is vilified by non-autistic people.

We are made to suppress it through ABA, and taught to avoid it in most other situations, lest it come off as “weird”. But who cares about “weird”? If it brings you comfort and doesn’t harm anyone, it’s acceptable, and as far as I’m concerned, “weird” isn’t a bad thing at all.

 

Stimming brings us comfort and it brings us joy. It helps us deal with our pain. It helps us connect with the world and the universe around us in a unique, and special way. Most importantly, it is a form of self-expression. An Autistic person’s stims are as unique as them, and they deserve to be respected as such.

Stimming also happens to be one of the ways Autistic people are easily identified in public. If people have a hard time believing you are Autistic, flourishing your stims openly may persuade them before they have the chance to voice that.

Stimming openly is also a measure of defiance, in a society where Autistic expression is frowned upon. Stimming openly and without hesitation is one way we can enjoy ourselves, express ourselves, and defy cure-rhetoric.

 

In summation, two of the best ways to survive April as an Autistic person are to openly stim, and to express your passions and interests. Turn to the things you love for joy, even if they are forbidden. It has long been said that the best way to defy the anti-autistic narrative, and to spite your oppressors, is to be openly Autistic in front of them. To flaunt it, and to wear it with pride. Living as an Autistic person is one of the most defiant things you can do and is also the most gratifying.

 

That being said, it is important to take safety precautions. When it comes to openly stimming, apply your judgement and be careful doing so around law enforcement, or anyone with the power to do you serious harm. Remember to protect yourself first and foremost: know your limits, and apply your judgment to the best of your ability. You know how to take care of yourself best.

These ideas are not to be seen as solid instructions, but concepts to be molded, customized, and personalized to suit you. Withstanding April is hard for many Autistics, and I hope that these ideas bring comfort, hope, and amusement to some of you. Best of luck surviving, and fighting April.

 

 

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Empathy: A Cultural Neurodiversity Perspective

Imagine living in another country or planet where the culture was vastly different from what you were used to; most people acted completely differently from you. Imagine that what was normal to you was absurd to most others; what was normal to them seemed absurd or nonsensical to you. Imagine that because of these cultural differences, you were the one seen as “odd”. More importantly, when misunderstandings occurred, you were blamed. Because everybody acted so differently from you, saw the world differently than you did, it was hard for you to understand them, and you were blamed: it must have been some sort of personal defect; perhaps a lack of empathy. You may eventually learn to understand others on some level, but you will always be different and painfully aware of it. You may resonate with those who share similar traits, but to the majority of the population you’re a deviant. According to them, you lack the empathy needed to connect.

 

This is a reality that Autistic individuals face every day. There is a stereotype that we lack empathy. The truth is, however, that everybody, including Autistics, possess varying degrees of empathy. Moreover, empathy has many different interpretations and is no single concrete thing. Allistic (non-autistic) people are included in this. Therefore, to say that an entire population of people lack empathy is stereotyping, and unfairly so.

 

Much of the reason we are labeled as collectively lacking empathy lies in the reason stated in the introductory paragraph: cultural difference. Neurotypicals make up the majority of society, and because Autistics are wired differently, we may struggle to understand them. This can come in the form of not interpreting their social cues, struggling to understand expressions, or comprehending their language.

 

However, this does not reflect a lack of empathy. This reflects a difficulty in understanding something that is different from you. In this case, Autistic culture versus neurotypical culture. When my family moved from India to Canada, we faced similar struggles when it came to understanding the different dynamics of Western culture. Indeed, immigrants usually find a hard time adjusting to new norms at first. And when a person’s brain is wired differently to the rest of the population, these challenges can be amplified.

 

Autistic people, in reality, often experience extreme amounts of empathy. This is one of the reasons many of us have a strong sense of justice; we feel for those who struggle and want to make the world a better place for them. This is why many of us, including myself, are emotionally impacted by stories, movies, or music. It is also why myself and many other Autistics tend to develop powerful bonds and strong emotional attachments to others, sometimes to a fault. Many of us have reported having to shut down and lock ourselves in due to this, which is consistent with the Intense World Theory of Autism. When people suffer, we notice, and we care. We may not always express it in a typical way, but we do care.

 

Autistics are stereotyped to lack empathy due to innate differences: our difficulties understanding neurotypicals, and the differences in how we respond to emotions.

 

The irony is that non-autistic people tend to blame miscommunication entirely on us without criticizing themselves or examining their own prejudices. They say we lack empathy, but did they ever stop to see if they understood how we feel? Most of the time they do not. Every stereotype about Autistic empathy can be flipped: non-Autistic people may not be able to read our body language or social cues. They may struggle to understand our expressions or feelings. And such is often the case.

 

Autistics usually, in contrast, get along with each other, or at least understand each other, better than Allistics understand us, since our minds are wired more similarly, and we can relate to one another. Many discussions around Autism revolves around comparisons of our sensory, emotional, and other experiences. This empathetic support provides us with much-needed validation: that we are not broken; we are just Autistic; our minds are wired differently.

 

Now, it is important to remember that empathy varies within every individual; Autistic or not. There are some Autistics who may genuinely lack empathy, but this does not mean that they do not care for others. One can lack empathy but still have morality. And just because some Autistics may genuinely lack empathy does not mean we all do. Just as some neurotypicals lack empathy, but that does not automatically make them bad people, nor does it imply that all neurotypicals lack empathy.

 

 

 

My personal experience with empathy is complicated. As a child, there were adults who assumed I didn’t have empathy. And it was true that as a child, there were times when I was self-centered, or not understanding of the needs or wishes of others. However, I was far from the only kid who behaved this way, and others often treated similarly; in fact, it could be argued that I was treated this way far more than I treated others.

 

As a teenager and adult, I am always deeply impacted by depictions of injustice; particularly bullying, exclusion, or environmental destruction. I was also affected by depictions of oppression; whether it was from my friends in the LGBTQ community, or people of other subjugated minority groups, being multiply marginalized myself. Abuse, bullying, social rejection, prejudice, trauma, depression, and suicide, are issues that very deeply affect me. They rattle me so much I develop strong opinions regarding these issues.

 

I am not fully innocent myself (is anyone?), having said and done things I’m not proud of. But for what it’s worth, I stood up for others. I spent time with those who were excluded, and helped them fight back against bullies. I know firsthand the negative effects of unfairly judging others, and that was something I swore never to do. I absolutely refuse to be ruled by prejudice, even when pressured to by others. When it comes to friendships, I display a staunch and fierce loyalty to people I care about, vowing to do my best to be a caring and supportive person. Even if such loyalty is rarely, if ever returned.

 

All these attributes are a testament to my empathy, and directly contradict the words of non-autistic “professionals” who played off stereotypes and tried to label me unempathetic just because I may not have expressed my emotions the way they wanted me to.

 

My affective empathy is strong, and I can often tell if someone is upset or unsettled, even if I do not show external signs of knowing. As an Autistic, I am naturally hyper-aware and sensitive of my surroundings. However, there are times when I do not understand why someone feels a certain way. Why would someone choose to end a close friendship rather than fixing the problems that arose just because one situation was difficult to deal with? Why does Autistic infodumping(the act of imparting substantial amounts of information on a specific subject) come off as “annoying” to certain people? Why do parents mourn having an Autistic child? Why do minor things make people uncomfortable?

 

Some of these are questions asked by everyone, and it goes to show that empathy is fluid and varies from person to person.

 

There are many instances in which I can tell that a non-autistic (or in some cases, even another Autistic) person feels a certain way about something, but I will not understand why they feel that way, or will disagree with their perspective, which is also perfectly normal. While it is my responsibility to be a respectful and understanding person, it is also their responsibility to meet me in the middle and be understanding of my perspective.

 

It is a common saying within the Autistic community that where we give 97%, Allistics resent having to give back a meager 3% of emotional energy and empathy. This isn’t fair. For proper inclusion, we must demand an equal amount of understanding.

 

Empathy goes both ways.

Why I Do Not Identify as a “Self-Advocate”

I am not a “self-advocate”. I am an Autistic activist.

 

Since I started advocating as a member of the Autistic community (a collective group of Autistic, pro-neurodiversity activists who fight for acceptance of Autistic people, advocate for our civil rights, and combat narratives that view us as tragic diseases), I was branded a “self-advocate”.

Now, some people may find this term appealing or empowering. I don’t. In fact, I truly despise it: a term used to minimize our efforts and silence us. I hope that someday this term gets phased out of existence.

In disability advocacy, a “self-advocate” is someone who happens to advocate for themselves. Now, for those who value intersectionality, you may already start to see a problem with this. Why is the term “self-advocate” applied only to disabled and neurodivergent people?

How come people of colour who fight for racial justice aren’t labeled “self-advocates”? How come LGBT+ activists are not called “self-advocates”? How come most activists are simply referred to as such, rather than “self-advocates”?

We recognize these people as brave individuals fighting for their community, sometimes putting their safety on the line. It comes as no surprise to the layperson to see a member a marginalized group standing up for their demographic as an activist. Most oppressed groups throughout history have been known to come together as a community to fight for their rights. So why are only disabled/neurodivergent activists called “self-advocates”?

The answer is simple, but also disturbing: the term “self-advocate” is used to deny us agency. Autistics are often not seen as full human beings. We are assumed to be incompetent and incapable of fighting for ourselves. It is assumed that unlike other marginalized communities, we cannot come together and fight alongside one another. When someone refers to me or any Autistic individual as a “self-advocate”, what I hear is “I am genuinely surprised to see an Autistic person voicing their opinion on Autistic issues”. People often assume that Autistic activists are rare, or don’t have much to say about how we are treated. An assumption that is quite obviously false, and perpetuated with labels like “self-advocate” – used ultimately as a silencing tactic.

“Self-advocate” is also fundamentally wrong in another way: it assumes that we must advocate only for ourselves. One of the most common phrases used to silence Autistic activists is, “you don’t speak for all Autistics”. While it is true that we cannot speak for every Autistic person, this also implies that we are incapable of standing up for our community. And why should we only be permitted to speak in ways that non-autistic people approve of? Why should everything we say be carefully coded as applying only to us? Why can’t we fight for the fair treatment of everyone in our community, the same way members of other marginalized groups do?

When other disenfranchised activists fight for their community, they are just seen as activists. They want justice for everyone in their group, not just themselves. Thus, self-advocate is inaccurate to describe Autistic people like myself, who fight to make sure that no Autistic is ever mistreated or oppressed. We fight for the liberation and empowerment of all who share our neurology.

There are many “controversies” over Allistic (non-autistic) parents of Autistic children clashing with those they consider “self-advocates”. These parents will often point fingers at us for wanting to “speak for everyone in our community”, and cite it as a reason that “self-advocates” should not take the center stage. Ironically enough, they are the ones who try to speak over us.

It is true that nobody of any demographic can speak for every single individual. That is virtually impossible. However, Autistic people, like members of other communities, CAN and DO stand up and fight for each other. We are perfectly capable of creating our own movement, one centered around Autistic voices.

So, to my fellow esteemed Autistic activists, it’s time to drop this demeaning and useless term. Stop calling yourself a self-advocate, and start referring to yourself as an Autistic activist.

 

 

 

Autism: Journey to Discovering the Neurodiversity Movement

A Spoken Word Poem by The Autistinquisitor/Rishav Banerjee

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.

 

 

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. Stims come in all shapes and sizes – from vocal ones, to visual, to audio, to motion. Motion is the most common one as it is most easily detectable.

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 correct that Autistics stim more than others; but the assumption exists because we stim in unusual and unique ways. Autistic brains and nervous systems are wired differently than the average neurotypical individual. 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 direct result of our acute 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. I am a strong advocate for exercise and physical activity for Autistics, as the movement can count as extreme stimulation to help deal with sensory issues and anxiety.

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 this act. 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.