Asperger's Syndrome

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    Nera Birch

    This Graphic Shows What the Autism Spectrum Really Looks Like

    Learn about life on the autism spectrum from people with first-hand experience. Add their stories to your inbox. Sign up for Notes From the Spectrum. Autism is a type of neurodiversity associated with characteristics like passionate interest in specific topics, difficulty with typical communication methods, sensory sensitivities, and using repetitive motions (sometimes called stimming) to regulate their experience. There has been so much discussion in the disability community, especially in the autistic community, about functioning labels. That’s why Tumblr user levianta created a set of five images to explain what we mean when we say autism is on a spectrum. Below, I’ve included the images, as well as an explanation of what each means to me as an autistic person. Autism has always been perceived as a spectrum. When most people think of a spectrum, they think of the graphic below — a horizontal line that runs from “low-functioning” to “high-functioning.” Everybody is supposed to fit neatly in their own dot on the spectrum. But, that’s not how it works at all. The second graphic is something that is becoming more common in the neurodiversity world. It illustrates how we can be very functioning in some ways and not as much in others. The characteristics reflected in this diagram include depression, fixations, abnormal/flat speech, noise sensitivity, social difficulty, anxiety, abnormal posture, poor eye contact, tics and fidgets and aggression. With this graphic, everyone can map their own personal spectrum. I love this set of graphics. I have been labeled “high-functioning.” I’ve been stuck on the far right end of the linear spectrum by professionals and government agencies my whole life. I present very neurotypically at appointments and interviews, so much so that I have been denied services I desperately need. I struggle in so many areas. My current mental state right now proves that more than ever. I’m suffering from one of the most severe burnouts in my life, purely because I try to live up to the label of “high-functioning” every day. It is something I have been coached and trained to do and something society expects of me. I am very lucky to have an amazing support system, but masking is wreaking havoc on my life. If I mapped my own autism based on this graphic, I would say I’m “higher functioning” on the verbal and social skills side of the map, but pretty low on things like anxiety and sensory issues. The third image (pictured below) says, “No two autistic people are exactly alike, but we shouldn’t be reduced to ‘high-functioning’ and ‘low-functioning’ stereotypes either,” and includes two different wheels with different skills and struggles highlighted. The first wheel represents Tumblr user levianta‘s autism, and the second wheel represents their brother’s. Below both wheels it says, “we have the same ‘amount’ of autism, just different symptoms.”   It’s worth mentioning that autism is sometimes listed as a “disorder” with “symptoms” in medical definitions, but it is not something that needs “fixing.” People on the spectrum simply experience the world differently than typical people. Even still, I loved this part of the graphic because I had never thought about autism that way, but that’s how I’ll view it from now on. I have often felt that I wasn’t “autistic enough,” except maybe on my bad days. My spouse and I would even call those my autistic days. It was freeing to realize that every day was an autistic day. Just because I was stimming a lot, did not me I had a bad or difficult day. It’s taking a lot of work, but I can let myself be autistic in public and around people. And being autistic equals being myself. The next image says: “the spectrum doesn’t look like this” with four people lined up, gradually becoming redder (symbolizing the “more autistic” idea mentioned above), while the final image says “we are far more,” with four technicolor people lined up (symbolizing how different every autistic person can be!). These graphics are so important because they empower autistic people who are considered “high-functioning” and “low-functioning.” I think we often base our functioning levels on whether you are verbal or not. But there are people who can’t communicate in a traditional way that do things like go to college, which I don’t have the capacity to do. People who are considered “lower functioning” can achieve things I could only dream of. By labeling us on a straight line, it hurts the people who can’t live up to their label and dismisses the talents and skills of those who are considered “lower-functioning.” Let’s empower every autistic person!

    Kaden M (he/they)

    Why It’s OK, Even Necessary to Self-Diagnose in the Autism Community

    If you have read online about autism and neurodiversity as a whole on Instagram, TikTok and other social media and online platforms, you may see that self-diagnosis is considered valid and accepted… and by that, I mean accepted as an identity, with the concept of labeling yourself as being Autistic in order to better explain who you are as acceptable. Valid. This is something I didn’t immediately understand. Why wouldn’t someone get a diagnosis? Well, there are a number of reasons. Here are some of the most common ones I have read: 1. Getting a full autism spectrum disorder diagnosis, including an IQ test and interview, is very expensive and/or may have long wait times. 2. Females and those assigned female at birth are particularly less likely to receive an accurate diagnosis. They are often misdiagnosed with a different condition or nothing at all — just labeled as “sensitive.” This is because the current DSM-5 criteria for autism are based mostly on boys (this is also true for ADHD). That being said, there is no one specific way to be Autistic — anyone can have any presentation. My point is that presentation varies widely from what is in the current DSM. Some may ask, is being Autistic just a trend? Something cool to say? A way to be different? But that’s the point, isn’t it? We (yes, I say we, as I feel I am part of this community) already grew up feeling different, unusual, odd, out of sync. We don’t want to be different necessarily — if anything, the opposite is true! When we realize we are Autistic, it validates our lived experiences, which oftentimes come with traumas like bullying, abuse, or neglect. Why am I so passionately writing this article, you may ask? Well, you may have guessed it — indeed I do self-identify/have self-diagnosed myself as being Autistic. I made this realization for many reasons, all of which may be too much for one article, but will certainly be something I write about going forward! But… but Kelly, you’re so social? But… you’re not that awkward? Kelly… I’ve never noticed you having a meltdown before? Well, wouldn’t we call those stereotypes? And second, one of the reasons many individuals are diagnosed later in life (if at all) is because of masking. Many Autistic people mask, or hide, their struggles. So sure, I may seem one way on the outside, but that is not truly indicative of what is on the inside. Not to mention the above comments would be stereotypes! Some stereotypes I’d like to squash: If you are Autistic, that means you are an introvert; you can’t be an extravert. FALSE. If you are Autistic, that means you are incapable of making eye contact or having close friends. FALSE. If you are Autistic, that means you are either “really Autistic” or “mildly Autistic.” FALSE. And so, so many more. I am Autistic because I have had lifelong struggles with social interactions; only I started to mask more as I got older. Fitting in has never been easy for me; I’ve always felt out of sync or like an alien. I am extremely sensitive, both emotionally and in a sensory processing sense. I struggle with attention and executive function. I can’t multitask. I had many developmental delays, including some that I never caught up to (I am an adult now!). I struggle with motor coordination. I tend to ramble. I have special interests and hyperfixations. I am drained easily by the stimuli around me. I have meltdowns, many of which are quiet or even silent, as I’ve written about previously. I don’t always notice when I’ve started to bore someone/monopolized the conversation. My processing speed is slow. I have learning disabilities, ADHD, anxiety, and depression, like many Autistics. I also have trauma from growing up undiagnosed. I struggle with handling changes and transitions, big or small. I am not flexible, often rigid in my thinking. I have low frustration tolerance. Mental pain is a much bigger deal to me than most physical pains. I struggle with eating at times because of sensory issues. I don’t understand sarcasm well and take things literally. And the list goes on… And just because these traits are part of my autism, it doesn’t mean someone else who is completely different is not also autistic. Once you’ve met one Autistic person, you’ve met one Autistic person. In other words, there is so much great and beautiful variation in this neurotype, one that can also be a challenging disability. So, whether you are diagnosed by a doctor or psychologist and able to receive official services, or you have self-diagnosed, you are valid. Totally and completely valid! I am Autistic and with that, I am slowly figuring out who I am as I battle mental illness, process trauma, and embrace my neurodivergent identity. I think I like who I am, even if it isn’t always easy or understood.

    8 Wearable Stim Toys for Autistic and Neurodivergent People

    Stimming is a necessity in the lives of many neurodiverse people — including autistic people, people with ADHD and those with anxiety. Everybody stims in some way or another. I love having easily accessible wearable stim toys and things for my sensory needs with me at all times. There have been many times when I start to feel overwhelmed, need to release excess energy, or just feel the need to stim, and digging around in my bag for a stim toy is just too much for me. Wearing a stim toy means it can be fidgeted with throughout the day, it can be discreet in workplaces and school, and it can help with accessibility during meltdowns. Plus they look super cute! Here are some ideas for wearable stim objects or toys: 1. Mindfulness Fidget Bracelet Old Soul Project Bracelets are perfect for fidgeting, mindfulness, and help regulate the stress from overstimulation and under-stimulation that people with ADHD and/or on the autism spectrum often experience. The bracelet comes with ideas for exercises and ways to stim with the bracelet. Their site is also full of how-tos and great information. 2. Push Pop Fidget Bracelet I love those push pop fidget toys but I never have them handy when I need them. I love the idea of having a push pop bracelet on my wrist that’s easily accessible. You can find these in all sorts of colors and styles on Amazon. 3. Fidget Necklace Have you ever worn a necklace and played with it? Well, some necklaces are specifically designed for stimming. Check out Stimtastic’s stim jewelry collection. Their Concentric Circles Necklace has three different beads that spin independently of each other you can roll or spin just one or all three together. 4. Fidget Key Rings Having stim toys that you can easily access on your keys is perfect for autistic and neurodivergent people to use while out and about. There are push pops, pea poppers, and gear shifters that you can put on your key rings. Plus keyrings can be pretty fun to fidget with. 5. Chewable Jewelry Many autistic and other neurodiverse people stim through chewing on things. This can be chewing on their fingernails, clothes, etc. Having a chew necklace can be a great way to stim and stop destroying our nails and favorite t-shirts. One of my favorite companies is Chewelry. You can usually find their products on Amazon. Stimtastic also has some great chew necklaces. Most companies have different textures and hardness; you might want to try a couple of different variations out and decide what you like. 6. Spinner Rings Spinner rings are really popular for anxiety, but are great for fidgeting and stimming for other reasons as well, such as ADHD and autism. I wear a lot of rings and I often find myself fidgeting with them. You can find spinner rings on Amazon and beautiful handmade spinner rings on Etsy like this one from BlackFeatherDesignUK. 7. Hair Ties If you have long hair, you probably always have a hair tie with you. Hair ties can be a wearable stim. Phone cord hair ties can be good for this because of the texture, and they’re fun to fidget with. However, everyone has their likes and dislikes with texture. Try them out to find out what feels best to you. 8. Bonus — Earplugs While earplugs are not necessarily stim toys, they are a great thing to always have with you for sensory issues. You can attach earplugs to a key chain or (as I’ve seen some people on TikTok creatively do with their loop earplugs),  make them into earrings.

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    Katie Louise

    What Does an Autistic Shutdown Feel Like?

    Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

    Nera Birch

    Depression vs. Autistic Burnout: How to Tell the Difference

    My depressive episodes and my autistic burnout episodes are two completely different things, although it did take quite a while to figure out that they were two separate entities. When I was younger, they blurred together a lot. I wasn’t able to verbalize the difference until recently. In my depressive episodes, all I want to do is sleep. Napping is the perfect way to diminish hours until it is time to go to bed again. I cry so much, usually loud gasping sobs. I also will talk to myself while crying, mostly nonsensical sentences. With burnout, I basically become paralyzed. During burnout, all I can do is sit somewhere and stare off into space. I don’t even feel like sleeping. I just become non-verbal and stare at the wall until a human comes along and tries to snap me out of it, although I am not always able to. If I’m by myself, it’s even worse, because I just have to sit there, waiting for it to be over. It’s like my meat puppet is there, but my soul is gone. I am able to cry, but it is usually just silent tears running down my face. Burnout is one of the scariest parts of being autistic, for me. It is terrifying being unable to even twitch a finger. There are differences in what causes the depression or burnout. I feel like my depression is more of a mental state and my burnout is when I just completely shut down. My burnout occurs most when I am done trying to exist in the scary human world and need a break. It happens a lot when I feel lonely or when I am going through a PTSD experience involving my abusive parents or ex-spouse. It also correlates a lot to when I feel like my social skills are inadequate and that no one will ever want to interact with me. One thing that is the same in both burnout and depression is the mean voice in my head. It is a constant litany of self-hate that enjoys reaching into the deepest depths of my mind to find whatever material it can use. The mean voice delights in bringing up whatever is necessary to keep me in a state of misery. Another similarity is the urge to kill myself. Both depression and burnout hurt a lot physically and mentally and my usually passive suicidal thoughts take a turn for the worse. The last thing they have in common is the occasional yo-yo effect. I will find myself being terribly upset one moment, better the next, and right back into the sadness. That makes it even harder to cope, because I never know what or when is happening next. There aren’t many tips I can give for dealing with either depression or burnout, other than to just try and get through it. I have made plans while in a good state of mind as to what to do if burnout or depression strikes. I have a list of activities, such as knitting and reading, and a list of people I can go to if I need help. I tell myself a lot that each minute that passes is another minute you managed to survive. It might be the smallest triumph, but at least it is a triumph.

    Asaka Mae

    What ‘Autism Is a Spectrum' Really Means

    Society’s perception of autism has appreciably expanded over the recent years. Gone are the days where people think all autistic people are Raymond Babbitt from “Rain Man.” These days, it’s common knowledge that autistic traits vary in intensity and come in different combinations. In other words: autism is a spectrum. And yet, far too often, our understanding of the spectrum ends at a very surface level. People look at me like I have two heads when I tell them that there is more than one explanation for so-called “autistic behavior,” that yes, even if you’ve come across two autistic people that act very similarly, the thought processes driving these behaviors may be vastly different. Just like much of the public, I had never considered these distinctions — until I found myself grappling with my own diagnosis. Being a “rare case,” I don’t see experiences like mine represented in the media, let alone in autistic circles. When I first received my diagnosis of autism (known as Asperger’s at that time) at 8, I was pretty much a textbook case. I preferred to talk to adults than kids my age. At recess, my teachers often found me curled up at the corner, reading encyclopedias made for much older kids. I liked people and even had a few friends my age, but I only wanted to talk about dogs — or else, I’d get bored. I often found myself stuck in my own head. Like many autistic people, I experienced alexithymia, or difficulty identifying one’s own emotions, and I had a hard time making sense of grey areas and contradictions. I had to do things a certain way — or else I’d get frustrated, sometimes to the point of tears. When I got a puppy, for example, I insisted that her leashes and collars had to be certain shades of pink. As I entered adolescence, my brain shifted gears. My ritualistic tendencies tapered away, and I became attached to social niceties that I previously did not care for. I began to adopt the mindsets of my non-autistic peers. It’s certainly not unusual for autistic people to display fewer autistic tendencies as they age. For many autistic people, these changes involve studied efforts to conform (also known as “masking“). Case in point, Temple Grandin once said: “The thing about being autistic is that you gradually get less and less autistic because you keep learning, you keep learning how to behave. It’s like being in a play; I’m always in a play.” I, however, don’t resonate with that trope. I never felt like I put on an act. Ultimately, I understood virtually everything typically developing kids could — just at a slower pace. Nonetheless, I still face obstacles. As an adult, my biggest challenge is communication. Though I’m outgoing and talkative, I appear to miss social cues, so my autism diagnosis is no surprise for those who have spoken to me, face-to-face, for a few minutes. You may be surprised, though, to learn why I act the way I do, because these are not the reasons you might expect from someone with an autism diagnosis. I don’t always make the “right” faces or talk in the “right” voice, but it’s not because I don’t know what people’s faces and voices indicate — it’s because my body doesn’t always cooperate with my mind, even though I understand. Sometimes, I blurt out awkward comments and go on tangents, but it’s not because I don’t see how or why that could be awkward — it’s because my mind moves too fast. I also have other social issues, but none of them reflect my ability to comprehend social norms or social cues (which are indeed real struggles for many autistic people — just not for me). “You’re a rare case,” a therapist once remarked. “I know,” I sighed. I don’t relate to most autism cliches and metaphors floating around on the Internet, even when they’re coming from autistic people themselves. Sometimes, I feel incredibly alone in my experience of autism. As a result, I’ve struggled to accept my autism diagnosis. I didn’t think it was possible to reconcile my internal experiences with this diagnosis. As a teenager, I fought my diagnosis. I was 15 when I first started questioning my autism diagnosis. One day, I found myself browsing through a website about ADHD and learning disabilities, after learning that two of my friends had ADHD. It was the first time that I actively sought out information about a disability other than autism, and damn, it was eye-opening. Long story short, it occurred to me that all these things I’ve previously chalked up to autism could well be explained by other diagnoses — I was thinking ADHD, and some combination of learning disabilities. Perhaps, autism was only a small part of my disability puzzle and not the whole thing, like I’d been led to believe. I went to my parents and began to probe. I wanted to know if I was tested for other, similar disabilities when I was diagnosed with autism. I wanted to know what my mom meant when she said I had “ADHD tendencies.” Have I ever been formally diagnosed with ADHD? Was it a matter of technicality (autism and ADHD couldn’t be diagnosed together until 2013), or did I simply not qualify? I wanted the whole saga, timeline and all. I was determined to find out which of my struggles could be explained by the autism diagnosis — and what couldn’t. I decided to refresh my knowledge on autism. I read articles, blog posts, and YouTube videos created by other autistic teenagers and young adults. I listened to dozens of people describe how autism influenced the way they think and feel. I couldn’t relate, beyond a surface level: for example, many of these people said they found school very difficult, and I did, too, but so do kids with other disabilities. My doubt only grew from there. Maybe I wasn’t autistic. At all. Soon, I told my parents that I wanted to speak to a doctor. “Asaka, you already have an IEP. You have all the help you need,” reasoned my mom, “Why do you care so much about labels?” “Because I need to tell everyone,” I said. My parents shook their heads. The more I fought my diagnosis, the harder my parents latched onto it. After all — what typical teenager would investigate their medical history in their free time and report it back to their classmates? My parents could only see these actions as a direct result of my autism. They reckoned that I spent so much time thinking about my disability because I had narrow interests, and that I cared so much about finding the “right” label because I was a rule-oriented, black-and-white thinker. My therapist was one of the few people who saw my quest as what it really was: a desperate attempt to negotiate with a world that ran on knee-jerk assumptions. And my parents, as much as they meant well, were a part of the problem. Language is a powerful thing. I knew my autism diagnosis wasn’t just a piece of paper handed to me — it was a lens through which people interpret my behavior. It was inescapable. Though I’d mostly grown out of my shrieking preteen self-consciousness, I couldn’t ignore the knowing looks. “Everyone in the school knows that you have autism,” I remembered my classmate informing me. It wasn’t that I felt insulted, but I felt misunderstood. I just couldn’t relate to many of the things associated with the word “autism.” And while my concerns regarding other diagnoses weren’t unfounded (years later, I’d be properly diagnosed with ADHD), it also served as a wedge, a way to distance myself from my autism diagnosis. More than anything, I wanted the permission to suggest that, well, actually, I’m not autistic, I have another disability. That year, I got re-tested. I’d convinced my case manager at school to write a referral to a neuropsychological evaluation, and my parents, though bewildered, wanted to support my self-advocacy — something that they have encouraged all my life, thankfully. I took an IQ test and an academic assessment, and then spoke to a doctor. He asked me and my dad some questions. “You have autism,” he said, less than halfway into the appointment. It wasn’t a concession, or some grand, deliberate conclusion. He sized me up like it was nothing, like there was a big sign plastered on my forehead that said “I’m autistic” and I’d asked him to read it. I was tired of fighting, but I also had lots of questions. Where do I go from here? Do I have to say that I’m autistic? What does it even mean to be autistic? These thoughts soon faded in the background, but they marinated, and I’d be reminded of it, every once in a while — like when someone in the audience asked me “What’s your disability?” when I gave a presentation on disability awareness, or when a questionnaire asked me to describe the nature of my disability. Yes, I have an autism diagnosis — but that doesn’t say much. Eventually, I realized that it wasn’t my autism diagnosis that was wrong, it was the assumptions attached to it that were wrong. The current edition of the DSM, the book that doctors use to diagnose mental conditions, states that a person should be diagnosed with autism when they demonstrate “deficits in social communication and social interaction” and “restricted, repetitive behaviors,” currently or by history. That sounds about right. The doctor was doing exactly what he was supposed to do. Though I couldn’t change my diagnosis, I could change the way I speak (and write) about my diagnosis. Today, I’m a writer and a disability advocate. When I talk about disability, I only mention my diagnoses when it’s relevant to the story. When I discuss my needs and limitations, I opt for specific, straightforward descriptions, rather than using “my autism” as a shorthand. Sometimes, I have to put myself first, and these shifts in language center my personal experiences, as opposed to some abstract, theoretical idea of autism. I don’t have to renounce my autism diagnosis in order to do that. Wasn’t I the one who said language is a powerful thing? In the past, I used to roll my eyes when people said that my diagnosis doesn’t define me because it was so painfully obvious. Any suggestion that I downplay my diagnosis made me defensive: it’s quite obvious that I’m a human being, first and foremost — why is it my responsibility to remind people of that? I now understand that de-emphasizing my diagnosis can be an empowering gesture. It doesn’t have to be about placating other people. If there’s anything I’ve learned, it’s that I can’t rely on a diagnosis to tell the world what I can do, what I can’t do, and what I need. I have to do that. At the end of the day, psychiatric diagnoses are socially constructed. Don’t get me wrong: brain structure and chemistry have a real, meaningful impact on people’s lives, and it’s crucial that we learn about it, think about it, and talk about it. That being said, frameworks evolve. Terminologies come and go; classifications grow and shrink. Nothing is set in stone. I can only hope that our language will refine, alongside our knowledge. In the meantime, I want the world to remember just how broad a singular diagnosis can be. Saying autism is a spectrum doesn’t just mean that autism looks different on everyone — it also means that autism, at least under its current definition, is felt and experienced differently by everyone. hey