Autistic Moments – Bleeding Lips

CW for self-harm

For those of you who don’t know, stimming is something that often goes hand in hand with autism. It’s short for self-stimulation, which is a way of helping those with sensory issues that are often associated with autism cope. It can help some focus – as was the original purpose of things like fidget-spinners and fidget cubes. It can be almost anything, such as hand-flapping, spinning, rocking, verbal stims in the form of sounds or words, tapping your foot up and down, playing with a click pen, etc. Stims are helpful in some way, and most are quite harmless. If you see an autistic person stimming in a way that seems odd but is harmless, don’t stop them, just let them do what they need to do.

That said, not all stims are harmless.

Now, I’m not talking about full blown self-harm in the form of something like cutting or burning due to depression or other mental conditions. This is more about an instinctual, subconscious thing. Such as me sitting here biting my lip while I type this.

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Image is of three attractive girls biting their lip in a sexy way, and the fourth is of Marge Simpson biting her lip in a comical manner.

When I say that I bite my lip, I don’t mean something cute and coy, like a movie star being flirtatious in a romance film. I mean that I bite my lip until bits of skin start to peel off, and then I end up bleeding. Sometimes I end up bleeding rather heavily, because I’ll be absentmindedly picking or biting on my lip and not realize just how thick the piece of skin that I’ve begun to tear is, and end up with a gash.

As someone who does this harmful type of stim… I honestly don’t have an answer as to whether you should stop someone doing it. I know I should say, “Yes, try to provide alternatives for the person stimming. Try to stop them from doing this, they’re hurting themselves.” But at the same time… I really love biting my lip. It’s one of my favorite stims, and I do it a lot when I’m focusing on something or deep in thought. Whenever my mom sees me doing it, she tries to get me to stop, which just annoys me.  So… to be perfectly honest, I’m on the fence about what to do.

Another time I started stimming harmfully was in high school, when swine flu was scaring everyone and they were giving shots for it on campus. Shots terrify me. I’ve gotten a little better over the years: my current method to deal with medical needles is to read out-loud from a random Wikipedia entry. But back then, I hadn’t quite figured out how to deal with it. To make things worse, I’d gone into the situation believing that there was an alternative nasal spray available. It was there, but not for me (I believe it was there for a handful of students who medically couldn’t get the normal shot for whatever reason).  So, I instantly freaked out, and started biting my arm quite harshly as I sat down to distract me from the fact that they were about to stick me with a needle. They ended up having I believe two teachers physically holding me down and pulling my arm out of my mouth while I screamed before they could manage to get a shot in me. (And yet still no one considered I was autistic for another four or so years…)

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Image is of a shot with a tag saying “Get your flu shot.”

I think this is the easier stim for me to address, because I’ve moved on and learned better coping for it. For me, I needed a significant distraction with this stim. In that moment of panic, I couldn’t think of anything other than using pain to get through my fear of shots. Now, with the proper preparation, I can handle it. I need my brain distracted. For someone else who maybe bites themselves, it could be an oral fixation. There are some truly wonderful places around the internet where you can find necklaces and bracelets to cater to this need, and that might be a good alternative.

The truly dark side of self-harming stims is that you can cause health concerns. If you bite yourself too hard and end up breaking skin, there is a lot of bacteria in your mouth that could cause serious problems for the wound. Biting my lip could leave me at greater risk for contracting/unknowingly passing on something like cold sores. For me, something that helps curb my lip biting a little is chapstick or lipstick. I’ve found if I’m wearing it, I’m much less likely to pick on my lips. But, I don’t often wear it… simply because I like biting my lip. I should get better at it… and maybe I will in the future.

I have noticed that for me, it’s not the pain that is the reason for this stim. It’s the pealing action. I similarly have a fixation with pealing dead skin from the bottom of my foot (sorry if that’s gross, but that’s just how it is for me). So, a good alternative that I should try is something like pealing dried glue. But as long as I have dried lips, I’ll probably find myself picking on them.

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Image is of four differently flavored chapsticks.

Even if it’s hypocritical of me, I want to encourage those of you who have self-harming stims to search for alternatives, at least to ease up a little on the potential harm. Example: I do sometimes wear chapstick now, while five years ago I would have thrown it out and bitten myself more. If your fixation isn’t on the pain itself, focus on what the sensation you’re craving is when the pain is taken away, and find something that provides that sensation without causing harm.

If your fixation is the pain itself, then look for sources online that help with people who struggle with self-harming caused by depression and the like. They often provide suggestions for alternatives, such as wearing rubber bands and snapping them. I won’t tell you to not cause yourself pain because of some philosophy that pain itself is a ‘bad’ thing. Honestly… I don’t think so. People endure pain for tattoos and piercings, some people enjoy pain in ‘unconventional’ kinky settings, lots of people eat food so spicy that it causes them to cry just for fun; pain itself isn’t a problem in my eyes. Harm is, because harm carries health risks, and no stim should cause health risks. If your need is an oral stim, you wouldn’t chew on something with lead paint. The concept is the same. Take care of yourselves. You’re important.

For those of you who are neurotypical and reading this… please don’t judge me or others too harshly. There’s something soothing about my stims. Even the not-so-nice ones. I’m working on it in my own time.

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

Autistic Moments - Bleeding Lips

Image description: Some Girl with a Braid Presents: Autistic Moments – Bleeding Lips

First box: Some Girl with a Braid sits at her computer, reading absentmindedly.

Second box: Some Girl with a Braid continues to sit and read absentmindedly, with some blood beginning to come from her lip as she bites it.

Third box: Some Girl with a Braid’s lips are now bleeding rather heavily, while she continues to read absentmindedly.

Fourth box: Some Girl with a Braid’s lips continue to bleed, but she notices and says, “I really should stop doing this.” She continues to bite her lip.

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Autistic Moments: Aversions and Sensitivities

I recently read an article about a mom physically tackling and fighting her autistic child to force them to confront one of their sensitivities/aversions. She calls her child a burden, and laments his ‘tantrums’, apparently ignorant of what sensory overload induced meltdowns are about. I don’t want to give her credit and views by linking her, but it was an article published by the Washington Post, presented as a positive thing despite her admitting doctors consider her actions dangerous. I wanted to address a particular phrase. She describes her child’s aversions as ‘autistic phobias’. I can’t begin to express my dislike of this phrase. Aversions and sensitivities are not ‘phobias’. They can cause legitimate pain. I have a phobia of spiders. I have an aversion to seafood. I know the difference.

I’ve been wanting to do a piece about sensory sensitivity and aversions for a while now, I just wasn’t sure how to start it. Now I know.

If your kid has an aversion to a large, crowded arena sized theater, let me give you what I imagine they might be experiencing in terms you might comprehend. Picture that you’ve been dropped into the ocean. You’re kicking frantically to stay afloat at the surface, exhausting you to the point that you want to pass out, but you can’t because you need to survive. It’s so deep that you can’t see the bottom. The vastness and space are oppressive and make you feel small and vulnerable. The darkness below is an expanse in which anything can be hiding to come up and chomp your legs. There are large fish making strange noises with large teeth swimming all around you, and you don’t know if you’re their prey or not. Waves keep hitting you, salt is stinging your eyes, and the water is so cold it burns your skin. The noises around you cause literal pain with how loud and close they are and make your eardrums feel like they’re going to explode. Everything happening all at once is overloading your senses because you can’t focus on each individual problem at the same time, so it turns into a giant ball of pain. You’re terrified, you don’t know how or when this will end. All you want is to get back into a boat and feel something solid under your feet, to be surrounded by familiar people who’ll give you a blanket and a cup of hot chocolate, to be in a safe environment. Instead, you give in and shut off, resigning to your fate as a tortured, drowning victim as you sink.

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Image is of a swimmer sinking into a dark ocean

Some people are professional divers or marine biologists who feel right at home and happy in this environment. They know that this particular species of fish is just curious and harmless to humans, they know how to block out the noise. They bring gear to give them protection from the elements. They have a great time with this experience. But that’s not necessarily you. In this scenario, the theater is the ocean, and you are a marine biologist. Try to understand that your kid is not. And they won’t be just because you beat them into submission – that’s just forcing them to chose between two different types of torture. Do they fight the waves, or let the fish drag them down? Forcing this choice on your child will make them suppress themselves around you in an unhealthy way that will emerge later as an adult or teen in the form of trust issues and trauma.

I don’t have this particular aversion to theaters, but I would like to talk about one I do have. I have a lot of food aversions and sensitivities. To throw extra wood on that fire, I literally taste things most people do not – my biology class in high school was talking about recessive traits, and there’s a paper with a particular very strong, very bitter, very unpleasant flavor on it that if you have a recessive trait you can taste, but most people do not. Only myself and one other person in the class could taste it. In addition to this, I also have strong aversions to certain textures and smells.

Let me make a quick comparison: If I told you I cooked up a nice batch of insects, the idea of putting that in your mouth would probably make you squirm and shake your head and make faces. Imagine those little legs prickling the inside of your cheek, that insect goo gushing out of its abdomen when you bite down, coating and sticking to your tongue. Little pieces of exoskeleton stuck against the roof of your mouth. It’s horrific – as in, literally a trope used in horror movies. That same aversion is what I feel towards textures of things like mushrooms and the smell of things like seafood. Just because some cultures see insects as perfectly delicious, legitimate food doesn’t mean you do. Just because you see mushrooms and seafood as perfectly delicious, legitimate food doesn’t mean I do.

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Image is a bowl of roaches. You are likely lying if this doesn’t make you squirm at least a little internally.

My mom used to hide food that I didn’t like in food I did like without telling me to try and trick me into eating it. I love mashed potatoes – so she put cauliflower in the mashed potatoes. She would not tell us what was in food unless we tried it first, leading me to just not eat a lot of food if I wasn’t fairly confident I knew what it was. She’d tell me that something in a solid color cup with a solid lid and a straw was my favorite drink (orange juice) when it was actually my least favorite drink (milk). That small mushrooms were actually ‘soft water-chestnuts’.

You know what this all amounted to? Me distrusting anyone giving me food if I don’t know exactly what it is and can’t see everything clearly. My husband even feels this instinctive distrust – for years, I was afraid if he offered me something new accompanied with the words, “Here, just try this, you’ll like it.” He could feel my distrust, and I think it hurt him a little. In short, my palate was not expanded by these actions, my distrust was. My palate expanded as an adult on my own time.

For example, I willingly tried a dish called Gobi Manchurian, which is essentially seasoned and fried cauliflower. It’s delicious. But I knew what was going into my mouth, there was no trick. I made the conscious choice to try it when I was open to the concept.

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Image is of a plate of gobi manchurian

Trying to get your autistic child to try new things is not bad, don’t misunderstand me. But breaking their trust to force the issue before they’re mentally able to cope is wrong, plain and simple.

Please note that I was not diagnosed as autistic as a child, and my mom had no concept of the intensity of autistic aversions. I’m not trying to bash her here, just trying to make a point. She really is a good mom, and my aversions were not as severe as some, so it may have not been as obvious. An example of a not good mom is one who will tackle their child in public, wrestle said child for over a half hour, and drag them kicking and screaming into a non-sensory friendly theater. Physically fighting them, practically body-slamming them, and dragging them as they scream for mercy is abuse.

If you’re forcing your child into non-sensory friendly environments, or forcing them to confront aversions, think about who you’re doing this for. Are you watching the milestones of neurotypical children and measuring your child against them, wishing you could brag about meeting those same milestones? Do you find yourself hating ‘autism’ and crying about what a burden dealing with ‘autism’ is, wishing you didn’t have ‘autism’ in your life? Do you call meltdowns ‘tantrums’, dismissing the cause of meltdowns entirely because you just see it as behavior in need of correcting? Do you find yourself overjoyed when your child does something ‘normal’ or is able to ‘pass’ not because you think your child is enjoying themselves or comfortable, but because for those moments it almost feels like you don’t have to deal with ‘autism’? Do you find yourself excusing abuse with “It’s okay, s/he’s autistic”? It’s not okay. And it’s not worth it. Try to imagine what your child is actually feeling and respond kindly and with empathy to that instead of focusing on how ‘autism’ affects you. It’s. Not. About. You.

And you know something… maybe your autistic kid will never get over their aversion the way I’ve learned to eat cauliflower. Maybe it’s so strong, so painful, that they just can’t. If it’s not harming them, then don’t push it. They don’t need to eat mushrooms. They don’t need to go to a non-sensory friendly performance in a giant arena with tons of screaming children.

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Image is of a variety of seafood

Something I don’t think I will ever overcome is my aversion to seafood. The smell is so abrasive that the idea of putting anything related to seafood in my mouth makes me break out into a cold sweat.

A while back, I went to this cooking event my parents had tickets for. They teach you how to make a meal, and the theme was New Orleans, so seafood was involved in some of the dishes. There was a dish that had small bits of crawfish in it. I didn’t have a lot in my bowl, but I knew it was there. All I could picture was that disgusting smell and how that smell would taste. My husband, then fiancé, was there with me, watching me try to force myself to put this food in my mouth. I literally trembled just holding the fork, tried to pretend I was a ‘normal’ adult, and ended up on the verge of tears.

My husband, Evan, said the most amazing thing. “You don’t have to eat it.”

He recognized that it was so difficult for me to mentally overcome this aversion that it was better to just not eat it, and I could eat something else later. It was like a wave of pure relief to be told I don’t have to force myself to do something I’m so opposed to. I felt understood and respected.

If your kid has aversions, give them the option to try and confront them, but don’t force it. In the long run, they’re only going to be hurt by it. Understand and respect them.

And, just for those in the back: Abuse is not excused because your child is autistic. If you wouldn’t throw your body on top of a neurotypical child and restrain/wrestle them for half an hour for something as trivial as not wanting to watch a concert you want them to watch, don’t do it to an autistic kid. Don’t force people to endure pain if there’s no danger in them not enduring it. Disability is not an excuse for abuse.

DISABILITY IS NOT AN EXCUSE FOR ABUSE.

 

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Autistic Moments – Aversions and Sensitivities (text)

Some Girl with a Braid: I can’t do it… I know there’s seafood. I can’t eat it.

Evan: You don’t have to eat it. It’s okay.

Some Girl with a Braid: I can feel her judging me. She’s watching me.

Evan: She doesn’t matter. You don’t need to eat it.

Some Girl with a Braid: I love you. Let’s get McDonalds.

Autistic Moments: Autistics Should Be Sterilized

Recently, I encountered an ‘Autism Mom’ who wrote that she thinks her son shouldn’t be allowed to reproduce. She uses these words: “I am still deeply worried about the idea that he could get someone pregnant and yet could never be a real father – which is why I will insist on having medical power of attorney, so that I will be able to make the decision about a vasectomy for him after he turns 18.” This is Judith Newman, author of ‘To Siri with Love’. (Updated)

According to a New York Times review, she advocates, in fact, for (implied non-voluntary/forced) vasectomies for all autistic men. I’m not sure if she assumes autistic women only have sex with autistic men (in case she reads this and doesn’t know, we are not a separate species incapable of reproducing with neurotypicals), or if she thinks that I too should be sterilized, but men were the ones specifically mentioned. Full disclosure, I have not read the entire book this woman has written detailing her point of view, and I do not wish to give money, publicity, and recognition to someone who seems to consider something that terrible as an option. I have read several passages, and found them disturbing enough to avoid the rest for my own mental health. However, I would like to discuss this topic of sterilization because there are a disturbing number of people out there – including those who claim to be allies of autistics – who feel that we should not be allowed to be parents.

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Let me just say it straight up for all the autism parents out there who think that sterilizing their children should be an option. IT. IS. NOT. YOUR. DECISION. Our bodies, our choice. Plain and simple. It is not your right to steal our potential from us.

The fact that any of you would even think it is your call disgusts me. We are allowed to have agency as individuals. And it hurts me deeply that you want to take that away from us. I’ve always wanted to be a mom one day. I’m getting married in less than two months, and if all goes well, in the next few years I’ll have a mini-me or mini-him. Whenever I’ve helped care for young children, I haven’t had any real problems. I’ve worked at summer camps before handling between three to easily a hundred kids at a time. I even just helped look after my year-and-a-half-old niece yesterday and we had a delightful time as she babbled adorable nonsense and took me on a tour of the backyard garden. There are plenty of autistic parents out there who do just fine – or even just mediocre, which isn’t a crime since there are plenty of mediocre neurotypical parents out there whose kids turn out alright. Autistic parents are hard to find online, because any googling of the words ‘autism’ or ‘autistic’ and ‘mom’, ‘dad’, or ‘parent’ automatically leads to an army of neurotypical people who’ve stolen our label to slap on themselves, but they do exist. There’s even autistics out there in the education system or helping out in daycares. In many cases, we are completely capable of being nurturing, loving, successful parents. Maybe when we’re five, ten, or fifteen we’re not at that point yet, but we can learn. Judith Newman’s son is a minor. He has the potential to perhaps become capable of parenting in the next few decades. She wants to rob him of that decision because he’s not as visibly mature in one way or another as current parents – as if people never change? The reason autistic adults are so different from autistic children is that we have learned. We’ve been often forced to adapt by society around us. And even if we haven’t, there’s always the chance that we will in the future. So just because you might look at an autistic boy having a full meltdown and think, “Oh god, he could never be a parent” doesn’t mean that in the future he won’t be fully capable of parenting well. You don’t know where the future will go, how he might adapt and evolve. You should not rob him of his choices by sterilizing him. Thinking differently and having difficulties in life does not mean we should be required to give up the human right that almost all other people on this planet have, whether you think we’re worthy of it or not.

To draw a comparison (and I apologize if I make any mistakes, since it’s not a community I’m intimately familiar with, nor a part of), a deaf person who was born deaf and has no concept of hearing thinks differently from a hearing person. A deaf person would use a visual language – sign language. They may or may not be able to speak verbally. Does this mean that we should sterilize said deaf person out of fear that they won’t be able to communicate well enough if they have a hearing child? No, that’s preposterous, inhumane, and reminiscent of horrifically immoral eugenics programs. Would we do a DNA check and sterilize a hearing person if they were prone to having deaf children out of fear that they wouldn’t be able to communicate well enough with their child? No, of course not, due to presumed competence of able people. We instead provide services. The parent should learn the language their child is most suited for.

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Translated to autism, we think differently. Not in something as straightforward as lacking the experience of one of the senses, but our brains are wired differently from neurotypicals. While most of the autistics I’ve encountered are online, I find them easier to communicate with than neurotypicals, and from all the literature on the subject, neurotypicals seem to find just as much difficulty communicating with us as compared to with each other. Speaking hypothetically and with no first-hand experience, I imagine having autistic children as an autistic would be easier for me than it would be for a neurotypical. The language is one that’s natural for me, so to speak. I don’t need to learn it. This isn’t to say that I couldn’t care for a neurotypical child. As far as we can tell at this point, my niece is a bright, social, neurotypical child – she still came running to bang on the bathroom door when I left her for a few moments with her grandmother, so I must have done something right. But to say that because I may have some difficulty different from a neurotypical parent that I shouldn’t be allowed to have the ability to reproduce is appalling. It regulates basic human rights to gatekeepers. What if such a thing were to become common practice again (as we did used to practice forced sterilization)? Why stop at autistics? Should we include all disabilities? After all, how could a blind person look after a child? As seeing people, we think about how difficult that might be for us and all the problems that could happen, but blind people are parents all the time and things turn out fine. Blind adults know how to handle their blindness, and it’s really none of our business how or if they parent so long as they’re not doing something genuinely abusive warranting a call to CPS. Likewise, in general, autistic adults know how to handle autism, and it’s none of your business how or if we parent so long as we’re not doing something genuinely abusive. So don’t you dare force us to give up our choices because you presume we’ll forever be incompetent.

babies

I’d like to mention here something that I learned a while ago that broke my heart. I’ve always imagined I’d adopt a child. Ever since I was little and learned that not everyone had parents or a family, I wanted to provide that for someone if I could. My fiancé is adopted from Korea, and we discussed having one child biologically, then trying to adopt a second, preferably from Korea. I looked up the restrictions for who can adopt from Korea, and it broke me to learn that parents with any history of mental health issues – including autism – are prohibited from adopting. I began reading on forums about adoption, and trying to find anyone writing from the perspective of an autistic trying to adopt or who had adopted not just from Korea, but from anywhere. What I encountered was an unfortunate mess of people who’d been told they shouldn’t be allowed to adopt, or people saying to autistics that (without any knowledge about our abilities as a potential parent or who we are as individuals beyond being autistic) simply because we are autistic we shouldn’t be allowed to be parents because we would be incapable of emotionally nurturing a child due to our lack of empathy. This blends misinformation and incorrect stereotypes into policy that blocks caring, giving people from helping children find families.

Not all autistics want to be parents, and that should be respected. And there’s a good chance some of us perhaps shouldn’t be. But the potential for us to make that choice needs to be there, the same as it is for neurotypical people who might not make for good parents. I think that plenty of us would make for pretty good parents, and I know that there are plenty of autistic parents already out their raising happy children. We just need to not be robbed of our potential.

One last note: If you are a non-autistic parent of an autistic child and want to write a book about it, ensure that you have several autistic adults review your book for content and language as sensitivity readers. I would suggest going on twitter if you have an account, and asking for help using the #askingautistics hashtag – a space set up specifically for neurotypicals to ask autistics questions. Chances are you can find someone willing to help you there.

Asking autistics

The mother who wrote the book inspiring this blog post clearly did some research and listened to things like youtube channels of autistic adults as part of her research, which is excellent, but that’s not enough. She pays lip service to things that mean a lot to many autistics, such as pointing towards actually autistic sources, but then undermines it all with presumed incompetence (“I want to understand what he’s thinking. *Is* he thinking?” Yes. Yes he is. And you feeling he doesn’t think will hurt him one day), infantilization, promotion of eugenics, appropriation of autistic adults without their consent or consultation, othering, demeaning language, dismissal of her own son’s agency as a person, dismissal of her son’s privacy as an individual, and overall harmful bile. An autistic sensitivity reader could have seen this and instantly told her how incredibly harmful such language is to our community – and to her son. I don’t think that parents with autistic children should never write books about their experience. I think such works can be very useful to other parents facing similar situations. However, they need to be extremely careful in doing so and ensure that they are not belittling, shouting over, harming, or presuming to speak for autistics. We are the only people who can truly speak for autistics. Keep that in mind next time you see a non-autistic writer appropriating our label, and if you read their work, read it with a grain of salt and a critical lens.

Like, share, comment, and/or follow to show support! You can also find me on facebook as Some Girl with a Braid, or on Twitter @AmalenaCaldwell.

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Image text:

Some Girl With a Braid at Six Years Old: When I grow up, I’m going to have a baby like my doll, and I’m going to make up a name for her like my mommy and daddy made up my name, and I’m going to love her, and take care of her, and cuddle her, and read to her, and teach her dancing…

Some Girl With a Braid at Twelve Years Old: There’s so many children without nice families like mine… I should make a family for one or two when I grow up. More people should adopt. I should try to adopt.

Some Girl With a Braid at Twenty-Four Years Old: You are the cutest little niece a girl could ask for. I hope your future cousin is even half as cute as you, you adorable little girl.

Niece: Kitty-Cat ah Goo!

Internet: Autistic people should be sterilized. Autistic men should have vasectomies. Autistics should not be allowed to adopt. Autistics should never be parents. Reproducing is a right they should not be allowed.

Some Girl With a Braid: *Sobs quietly*

(Update, 3:43 – came across an extremely disturbing passage and have decided to name names because while I don’t want to give her publicity, this needs to be shamed.)

Autistic Moments – Don’t Touch My Hair

I’ve noticed that in life, if there’s something unusual about a person, other people will want to touch them. They often won’t ask permission, and sometimes even if they do, they do so while in the middle of doing the thing they’re asking permission for. I don’t quite understand why others have this urge to touch strangers around them, but it gets very, very annoying.

Sometimes I’ll be standing in line somewhere like the supermarket, feel something move behind me, and turn around to find my hair in some stranger’s hands. This has happened enough times that it doesn’t even surprise me anymore. I’ve had waiters/waitresses sneak up behind me and start petting my braid, women grab my braid while I’m standing in line for the bathroom, and even groups of people surround me and start passing my hair around in their hands like a braided joint.

If I were a neurotypical person, I think this would be incredibly annoying and invasive. As an autistic person, I have to suppress the urge to violently swing around and roundhouse kick my space invader in the face because strangers touching me (especially by surprise) triggers a fight or flight instinctive response. My body tenses, I feel panic in my chest, I have to sometimes slip into meditation breathing to remember that I’m not actually in danger. Then I have to pretend to be nice, because apparently if I don’t want strangers touching me, I shouldn’t choose to be different (yes I have actually been told that before by multiple people). I plaster a smiling mask to my face and answer the repetitious questions everyone has.

Yes, it’s real. No, I don’t want to donate my hair. Because I like it on my head.

I’ve been growing it for eighteen years. No, I am not eighteen years old.

It is four and a half feet long when open. I sometimes trim it, but never cut it.

I wash it in the shower. With shampoo, conditioner, and water. Like everyone else.

I go to the bathroom just like everyone else and it doesn’t get in the way. Why would you ask a stranger how they go to the bathroom?

fighting stance

It does feel a bit like an attack whenever I’m out in public and get subjected to random pawing. I like my personal space. I can barely stomach hugs if I’m not already comfortable with the person I’m hugging. Having people surprise me by touching me drives me crazy in a very bad way. The worst part is how they always seem to ‘mean well’. I tell myself, they’re just curious, it’s fine. My hair is very unusual, and they’ve probably never seen something quite like it in person before. If it’s a kid, I don’t even really mind because kids are usually adorable – and they are actually the ones more likely to ask permission first. But adults should know better.

If you see someone who’s physically different in some way, don’t follow your instinct to immediately put your hands on them. For one, it’s really rude and invasive, but you also have no idea what sort of tolerance they have for that type of thing. They could be autistic, and having a stranger touch them could trigger fight or flight instincts. Don’t be responsible for traumatizing people who dare to leave the house while looking different. The day is already a minefield for us. Don’t be a mine. Being touched by strangers should not be the tax people have to pay if they keep their hair a way that you don’t, whether they have unusual colored hair dyes, curls, are black and have natural hair, or even if it’s just that their hair is longer than average. If you feel you really want to touch someone’s hair, tattoo, nails, or anything else, always ask permission. And if they tell you no, accept their choice without being offended as if you’re owed the right to lay your hands on someone. You’re not.

 

Has anyone else experienced this sort of thing? How do you handle it?

Like, share, comment, and/or follow to show support! You can also find me on facebook as Some Girl with a Braid, or on Twitter @AmalenaCaldwell.

 

Autistic Moments - Don't Touch Me

Picture text:

Space Invader: (grabs my hair) Oh wow! Your hair is so long!

Some Girl with a Braid: Do I know you?

Space Invader: I just had to come over! Your hair’s so long!

Some Girl with a Braid: Alright. And do you normally sneak up behind strangers and grope their hair? At what point while I was standing here did you get the message that I wanted you to touch me?

Space Invader: So can I touch your hair?

Some Girl with a Braid: Gee, nice of you to ask. NO.

 

 

Autistic Moments – What’s Wrong?

Apparently I forget about my face. It’s there, I know, and I’m supposed to put more effort into it, but I don’t. I don’t get why I should, really. Smiling all the time hurts my face, and why should I put effort into my expression especially when I’m not in the middle of socializing? Sometimes I’m hyper focused on something, and that focus means that I don’t have the diverted brain energy going into making my face palatable to others. Sometimes it’s just nice to be alone and stare into space while playing fantasies about mythical battles, dramatic romances, and epic dragons. When my brain’s so busy with such wonderful things, why would I bother trying to make my face look like I want to be approached?

Part of my lack of effort in my face is because I get annoyed when pictures are taken and my face isn’t perceived the way I perceive it. What’s the point in putting effort into smiling if the smile I like isn’t the smile other people like? I’ve been told that pictures I think look really nice (usually with a close-lipped smile) make me look like I want to murder people with some sort of death glare. That I don’t look properly happy without a big, toothy grin that feels weird to pose with on my face. I just don’t see it. I don’t think I look as good, I feel like I see more of me the way I see myself when I don’t smile at all, or when I have a slight smile. I think there’s something delicate about my lips in that way, and big, toothy smiles make me think of comedy, clowns, and jokes – all bulky things in my mind that are heavy and take up energy, even if they take up energy in a good way. Those things don’t mean ‘happy’ to me, not really. They’re amusing, of course, and I can feel happy while experiencing them, but that doesn’t capture ‘happy’ for me. Happy to me is more about being content and comfortable, with pizza, soft clothes, and a good book/movie/videogame. I don’t need smiles to enjoy those things. The way I feel in my head doesn’t match up to what other people feel my face expresses, and it can be exhausting practicing and making sure I remember not to let the mask slip.

I think some of the reason I get comments is because of gender. There’s a thing about getting girls to smile all the time that I don’t quite comprehend. If someone sees I’m not smiling, wouldn’t they understand there could be a reason I’m not smiling? Or maybe no reason to smile? Smiling takes energy and I wish people would stop demanding I spend energy for no good reason.

Just as common though are well meaning people who think I’m always sad or angry or that something must be wrong for me to be sitting by myself and staring off into space without any particular expression on my face. They just want to help, and I get that. I even appreciate the concern.

But sometimes sitting there alone and expressionless helps me recharge my social batteries before plunging into the fray once more. A few daydreams, a little bit of watching the grass grow, playing bejeweled on my phone, or bouncing my leg up and down, and I can be good to go.

So, nothing’s wrong, thank you for asking. I get that you mean well, but I really am fine and you don’t have to look so skeptical when I tell you I’m fine. If I’m not fine, chances are that I just need some time to recharge. If you are a close friend who knows that I enjoy spending time with them without feeling drained afterwards, that’s cool and I’m probably okay with hanging out while I recharge. If I’m not, don’t be offended. But if you’re just a well-meaning passerby, please continue to pass by. Don’t tell me to come on out of my shell because socializing and smiling will make me feel better. It won’t. And even when I do recharge, don’t be too worried about whether there’s a smile on my face. If it happens, it happens. But I don’t think it’s worth draining my batteries to force it.

Autistic Moments - What's wrong.png

Image text:

Well-Meaning Person: Hey, what’s wrong?

Some Girl with a Braid: Nothing. Why?

Well-Meaning Person: You look upset.

Some Girl with a Braid: Huh. Weird.

 

What type of techniques do you use to recharge? I have a few go-to stims (fidgeting, rubbing my eyes, bouncing my leg up and down), and I like soft quite places, like my bed with a heavy comforter (or two) and possibly a million pillows. I’m curious how others cope.

Like, share, comment, or follow me here, on Facebook (Some Girl with a Braid), or Twitter (@AmalenaCaldwell) for future updates if you enjoy my posts!

Autistic Moments – Talking Over Me

What is the correct way to refer to me and others like me? Let’s talk about talk.

When it comes to autism, there’s a lot of talk about talk. Mostly, in the form of arguments for or against one of two sides. One side promotes ‘person-first language’. Person-first language is calling someone a “person with autism.” This is because they feel that putting emphasis on the fact that we are people will help humanize us, and also often because they don’t want to see their child as a walking condition/diagnosis. Rather, they would like to see them as just their child.

The other side champions ‘identity-first language’. Aka: “I’m autistic”, “I’m an autistic”, or “I’m an autistic person.” This is because, since autism is in our brains and is a major aspect of our personality, we don’t see ourselves as separate from our condition anymore than you might see yourself as separate from your gender, sexuality, religion, race, or other intricate parts of your identity. We feel that separating autism from our personhood is dehumanizing in that it is trying to sanitize and change us to be more appealing to neurotypicals. As if we can’t be seen as both autistic and a person, that these things must be separate, because autism is not a person and the implication is that being neurotypical is the default onto which is added autism. Except that’s not the case. We cannot be without our autism, just like we cannot be without our gender, sexuality, religion, etc.

I’m female in the same way I’m autistic. No one ever stops me to say that I should say “No, you’re a person with female-ness. Put the person before the female.” The implication I get from that is that, somehow, females aren’t a type of people. Which is probably why no one says it, because females are undeniably people. But apparently, autistics are not?

If you can’t tell already, I prefer identity-first language for all the reasons I’ve listed, and probably a few more I’m forgetting.

The main point I’d like to get to isn’t the merits of one over the other. In fact, I think it’s just fine if someone prefers to be referred to as a person with autism (though as an English nut, I feel it’s a bulky, unnecessary phrase). If they do, then I’ll respect that and refer to them as such – though I should mention that the majority I’ve encountered and across the expanse of the internet prefer identity-first. No, the main point I’d like to get to has to do with non-autistic people getting all huffy and puffy over language. There are a lot of people online who claim to be autism advocates, parents, or professionals who flat out stamp on and insult autistic people for asking that their choices be respected. Sometimes a neurotypical posts something about “people with autism” and an autistic person corrects them, only to be virtually shouted at, berated, and belittled. Sometimes a neurotypical will seek out autistics and inform them that they’re being offensive.

However they make these comments, neurotypicals engaging in this behavior are disrespecting and offending the very people they claim they want to help. They are silencing our voices because we make them uncomfortable and they are accustomed to the stereotype that we cannot communicate. Sometimes they tell us that because we can speak, we don’t count (which is always amusing when this is told to someone who then reveals themselves to be non-verbal behind the keyboard).  It’s as if they want us to be silenced. They want to believe the stereotype that autistics cannot communicate. The advance of technology has made us more capable than ever before, and they don’t want us talking for ourselves, because then who will listen to them as the expert? We challenge their authority by existing and typing. You can’t have much more expertise and authority on autism beyond being autistic yourself and living it 24/7. I feel that these people talking over us are afraid that we’ll displace them and replace them as the ‘top dog’ in go-to autism related matters. They have a loud privilege at the moment in this society. Like all people with privilege, they’re afraid of losing it, even if it’s a sub-conscious fear. So they put us down and try to keep us quiet, try to make their voices the loudest.

No one likes being told that what they’re doing is hurtful. It’s a personal stab when someone accuses you of doing anything wrong, even if you didn’t mean to. But if you’re an adult, you should know to graciously accept comments and use them to better yourself. The proper response to an autistic person telling you, “Actually, I prefer being called autistic” is not “How dare you question me?! I have so many qualifications!” (or variations thereof). Instead, try, “I’m sorry, I didn’t know. I’ll try to do better in the future. Thank you.”

And as for other autistics out there… Don’t be afraid to correct people to whatever your preference is. If they don’t hear/read/see our voices and communications, then they’ll never change, never learn to respect our agency, and may not even realize we do indeed have our own agency. If you can’t emotionally handle the potential backlash, then do what’s best for your mental health. But if you can, know you have the support of at least this autistic. You do you, and don’t let anyone tell you you’re doing it wrong.

What are your thoughts on and experiences with person-first vs. identity-first language? Leave them in the comments below!

Autistic Moments - Talking Over Me

Comic Text:

Some Girl with a Braid says: … And that’s how I learned I’m autistic.

Blue Mommy Martyr says: Oh no, sweety, you shouldn’t say ‘Autistic’. Say ‘Person with Autism’ or else you’re insulting them. Put the ‘person’ first.

Some Girl with a Braid says: Can you not see us as people and autistics at the same time? I feel personhood is implied with any descriptive identity. And, as an autistic, I prefer identity-first language. Actually, the vast majority of autistics I’ve encountered within the autistic community prefer identity-first terminology because we feel that separating our personhood from our neurology is stigmatizing and vilifying a significant part of who we are. We cannot be the people we are without our autism. We cannot be people without our brains. Autism is also not something we can be rid of; it is not a cancer that can be cured or a purse that can be put down. It is always with us. It is who we are, for better or worse. It’s the same way you would refer to yourself as a female instead of ‘person with female-ness’. It’s a part of who you are and not offensive. If someone on the spectrum does prefer person-first language, then use it at their request, but by telling me how to talk about myself, you are policing and silencing the community you want to help, and insulting us by trying to rob our agency.

Blue Mommy Martyr says: How dare you! I know more about the experience of people with autism than you ever could because I’m a professional and I have a two year old nephew with autism!

Some Girl with a Braid says: …

Blue Mommy Martyr says: You obviously don’t know any better, so I’ll be offended by you on your behalf and attack you for you.

Some Girl with a Braid says: Are you serious right now?

Like, share, follow, etc. if you want continued updates of future posts and more Autistic Moments comics! You can find me at “Some Girl with a Braid” on Facebook and @AmalenaCaldwell on Twitter. Or, if you really love me, follow me here on my blog!

Autistic Moments – Faces

I’d always read about autistic people having difficulty with faces. Usually in regards to recognizing emotions and reading body language, but also in recognizing people. It’s called prosopagnosia, also known as ‘face blindness’, and is defined as the inability to remember faces, or sometimes even to differentiate a face from an object. I’d read about this often being something that autistics deal with, but always thought that was a symptom I just didn’t have. I can recognize my parents’ faces, my siblings, my cousins, grandparents, best friends, long-term classmates, and most teachers. If I meet someone I consider interesting, I’ll probably remember their face. Then I went to college, away from my small class of forty-two graduating students, some of whom I’d known for twelve years.

I started getting greeted by people I’d just met and completely not knowing why they were talking to me or why they knew my name unless they mentioned what class we had together, or how we’d met. I’d be unable to remember what name went with each person, and facebook (ironically named for this post) became a saving grace. I’d always had difficulty remembering names, but for the longest time I figured that was just because I knew too many people and that they only recognized me because of my unusual hair, so it was just natural some would slip my mind and I couldn’t be expected to remember everyone. Once in college, it was a jump into the deep end to try and keep everyone’s names and faces straight.

There was one particular class I remember that made it all crystal clear to me that perhaps I did have a mild version of this autistic symptom. I had a project I was supposed to present with a partner the next time we had class, and I was feeling fairly confident since she was a nice person and we’d done some good research. The day comes, and I go up to get ready to present. I’m pulling up our powerpoint presentation and realize I can’t spot her in the class. I start completely panicking, thinking that maybe she’s sick that day and I’d have to present her half of the project. I started frantically looking at the door, looking nervously at the teacher, reading over her half of the powerpoint so that I could practice at least a little and not bomb in front of the class… then at the last moment this girl walks up with a big smile and asks if I’m ready to go. Relief flooded me because I realized the only reason I thought she was absent was because she’d changed her hairstyle and that was how I’d been recognizing her up until that point.

I told this story to my fiance, and he just told me, “Yep, sounds like you had an autistic moment.” It took me a moment to realize, yeah, I had. And somehow, that felt really good to know.

If you’ve experienced moments like this, feel free to share them in the comments section, I’d love to hear all about it. Like, share, or follow me here, on Facebook (Some Girl with a Braid), or Twitter (@AmalenaCaldwell) for future updates if you enjoy my posts.

Autistic Moments - Faces

Comic Text:

Some Girl with a Braid says: See you tomorrow for the project presentation!

Girl with Ponytail says: Yep!

(Next day in class)

Some Girl with a Braid thinks: Oh no, she’s absent today, I’m screwed. Oh no, oh help, oh no…

Girl with Ponytail who’s hair is now open says: Hey! Ready to present our project?

Some Girl with a Braid says: Yep, all set up and ready to go!

Some Girl with a Braid thinks: Oh thank goodness, she just changed her hair.