Looking for Beta Readers!

Hello lovely readers!

I don’t have a proper post about being autistic for you today, but I do have a post about autistics in literature – specifically, the book I just finished a first edited rough draft for! I’m so excited I keep feeling the need to jump up and down!

The Unwanted: Castle of Blue Stone is the first book in a young adult fantasy series I hope to write, and is currently 77,000 words long (About 257 pages in a word document, for those who aren’t writers and don’t think in word-count). Here’s a short description:

 

In one moment, autistic fourteen-year-old Crimson Yates was exploring her new backyard. In the next, she found herself magically transported to a parallel world, and promptly shot with an arrow.

The refurbished ruins of an old military fort known as the Castle of the Unwanted serve as a safe haven for half-humans escaping persecution from a human-dominated, Native American/Nordic blended society. Crimson transitions to the new world with help from people she slowly acknowledges as friends: primarily a gender-bending shapeshifter and a half-jotunn (a type of semi-giant, often sprouting antlers) boy who’s cursed with deadly magic. While adults research ways to send her home, Crimson learns about the magic runes, how to ride mammoths, and how to wield a longsword. But all is not as idealistic as it would appear on the surface. Depictions of monsters loom on the walls, and threats rise from beyond the border of a neighboring kingdom. Crimson must find her courage and manage her anxieties to help save the place she’s come to call home, or risk losing everything – her life, and the lives of her new friends.

 

If this sounds interesting to you, I am on the search for beta readers! This does not mean editors: I am looking specifically for people of all demographics who enjoy reading and would be willing to read my book, answer questions about it, and provide general feedback.

I’d be especially interested in hearing feedback from POC, since the characters with the most ‘screen time’ are African American, Native American, and Asian, as well as any young adults/teenagers out there since that’s the target demographic.

Please contact me if you would be interested in helping. Thank you!

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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.)

A Letter to Autism Parents from an Autistic Adult

Dear Autism Parents,

I don’t know what it’s like to have an autistic kid. There’s a good chance I will in the future since there is definitely a genetic component to autism, but at the moment, it’s not an experience I can fully understand. I get that it’s hard – there’s things you have to cope with and learn that you never expected to have to cope with or learn when you decided to be a parent. And to the good parents, guardians, and family out there, you are absolutely invaluable. Really, I mean it. I realized as I was writing my last post about Disney that the reason I don’t have as many sensory issues as I might have otherwise is that my family, in providing good support, created a mobile sanctuary. These were my safe people. Safe people function kind of the same as a safe space. They provide comfort simply in their vicinity. They empower me and make it possible for me to do things that on my own I simply can’t. Their words and attitude towards me are vital in providing that support. I got messages like, “You are capable of so many great things”, “I know you can do this”, and “it’s okay to be yourself” throughout my childhood. And if I couldn’t do something, then “that’s okay, do you want to try again?” along with “Without failure, you’d never have success,” helped to pick me up and encourage me. These are good things to hear, said to me by a truly awesome ‘autism mom’ who never even labeled herself as such (I think the label is slightly problematic, but that’s a topic for a different post: suffice to say, if parents have a kid who’s deaf, they don’t call themselves ‘deaf parents’ because they themselves are not deaf). She was just my mom, and that was what I needed.

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Bad things for a kid to hear are unfortunately posted in almost every single ‘autism community’ comment section I’ve ever seen by the very parents we depend on. There are tons of comments about how autism ruins lives and destroys families, or that it’s simply such an awful thing to exist. Some parents do reprehensible things like recording their child during a meltdown without permission – an extremely vulnerable, sometimes terrifying episode that is emotionally tumultuous – and publishing it for the world to see. They talk about cleaning up a teenager’s fecal matter, as if it’s okay to discuss the very private bathroom difficulties of someone else who’s already dependent and vulnerable. There was even once a video made of an autism mom talking right in front of her kid about how she fantasized about killing herself and her autistic daughter, and only didn’t because she had one “normal” child. And they constantly insult, block, and put down adult autistics.

My Son's not a label snipit
This is part of an argument that occurred commenting on a video of an autistic explaining why she prefers to be called ‘autistic’ rather than ‘person with autism’. The mother in question felt that this was wrong, and her son should never be labeled – then proceeded to label him male, funny, spontaneous, intelligent, and interesting without seeing the irony.

There’s a rift between autism and autistic communities. One is made up mostly by people who know autistics, the other is made up by autistics themselves. The first seems to think that the latter standing up for themselves is some sort of crime. (Generally speaking – there are those out there who stand up for autistics, but they’re unfortunately not as loud.) For something as simple as saying that I think that those of us on the spectrum should be able to decide for ourselves how we’re referred to (autistic vs person with autism), I was told by a self-proclaimed mother of an autistic boy to “kindly fuck off and shove your judgement up your arse!” This was followed up with, “I couldn’t care less what you think… I don’t care what you have to say.” This isn’t even unusual. Everywhere there’s autism parents online, there’s a good amount who say and think exactly that. They treat autistic adults like we’re monsters out to get them, when we just want to say how it is to actually be autistic in hopes of autism parents doing well by their autistic children. When autism parents internalize the idea that autistic adults are bad, the message they’ll end up sending their autistic kids is that they’re bad. If a mom complains about how autism has ruined her life, then her kid hears that their existence has ruined her mom’s life.

And contrary to some people’s opinion, a lot of us do understand. Even those who are non-verbal can still be capable of understanding. Responding is the difficult part. And in understanding, we can internalize at a young age your frustrations and anger, and feel it’s not directed at, say, wishing you had more energy to keep up with your child, but rather at the fact that your child is autistic. That there is something wrong about the way we are that makes your life worse. That our existence is a burden, and you resent us for existing.

I think that even if you never flat out say these things to your child, but you say them to your friends or to strangers online, it’s still in your mind. It’ll subconsciously reflect in your behavior at some point and harm your child. I hope none of the autism moms who insult people like me online want to harm their children. Yet… they see no problem in harming other autistics, and try to discredit us whenever we speak.

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Can you spot the difference?

 

They tell us that we, autistic adults, are nothing like their kid, so we’re wrong in everything we say. Of course I’m nothing like a four-year-old. I’m twenty-four. What neurotypical twenty-four-year-old is just like a neurotypical four-year-old, and why are neurodivergent twenty-four-year-olds expected to be just like neurodivergent four-year-olds? We’re what they grow up to be, and have plenty of insight that could help you and your child if you’re willing to listen to us rather than insult and degrade us (I’ve seen some stoop so low as to call us brain-damaged R-words for daring to disagree). We don’t stop being legitimately autistic when we’re older. Also, there’s a very good chance that your child will grow up to agree with the things that those who are autistic adults say. Children don’t stay children forever. Insulting autistic adults insults your child’s future.

If an autistic adult has advice, or says that you might not be doing something right, don’t act defensively and lash out – even if said autistic adult doesn’t word things in a perfectly tactful manner. We’re autistic: social communication isn’t necessarily our forte, and it gets frustrating trying to teach neurotypicals the same thing over and over, so we might be a little rude once in a while, but generally mean well.

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When an autistic adult shares information, use it as a resource and gather that information. We’re on your side in that we just want what’s best for the next generation of autistics. If someone who’s autistic tells you ‘Traditional ABA therapy is compliance training that is torture for us – I know, I survived it’ don’t shout at them and rave about how it works because your kid can hug you without screaming in pain now. Consider what they’re saying. Maybe your child shouldn’t be forced to hug anyone if their initial reaction is to scream in pain. For more on why compliance training and forced physical contact is harmful, see my post on sexual assault: somegirlwithabraid.wordpress.com/2017/09/18/sexual-assault-autism-and-the-case-for-comprehensive-sex-education-for-autistics-and-the-disabled/

Most importantly when interacting with autistic adults online, think about the people on the other side of the screen. For me, there’s a level of sheer anxiety when I comment on autism online, because I just know that there’s a good chance some autism mom will rise up like a sea serpent and try to drown me for daring to sail in waters she sees as her territory and no one else’s. Don’t be a sea serpent. If you can’t see us as people worthy of respect, then remember we’re some Autism Mom’s kid. Think about how you would feel if you found out that a group of people ganged up on your child and cursed them out for daring to have an opinion and be autistic at the same time.

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And think about what your child might think of you when they get older, log onto facebook one day, scroll through your old conversations, and find you telling an autistic adult that they’re not worth listening to because they’re just a brain-damaged r-word. Your child will become us. They’ll understand that you stood against us – against them. They will feel betrayed. They will understand that you care less about their struggles than you care about your pride, and that you are the cause of some of their struggles. They might even believe that you don’t genuinely care if they read that you said to an autistic adult, “I couldn’t care less what you think… I don’t care what you have to say.”

I have wonderful parents who never insult me or other autistics. They encourage me and don’t see me as a burden. Sometimes I have disagreements with them, but overall, they’re pretty awesome. Be the kind of parent that an autistic adult son or daughter can be proud of and think well of when they’re grown.

In my opinion, the only people who should rightfully get a say about autism and how it’s treated are autistics. We know what the experience is like, and those who are not autistic do not. They can’t understand it the way we do. Meaning well isn’t enough if someone is doing something harmful. Listen to what we have to say. Read what we write. Try to understand our perspectives. Don’t shut us out and silence us. Don’t hurt us. You’re only hurting your own children.

Thank you for your time.

Sincerely,

An Autistic Adult

 

Are you autistic? Have you encountered these sorts of parents online? Would you like to share your experiences and say what you would like them to know? Comment below.

Alternatively, are you an Autism Parent, or other member of the Autism Community (aka, non-autistic people involved in the lives of autistics)? Are you willing to stand up for the Autistic Community by supporting our voices and agency? Comment below.

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 at Disney World

As a Floridian, I’ve had the great fortune of several magical trips to Disney World over the years. Disney World is awesome. It’s intense, but awesome. I’ve never had any real trouble with going to Disney because, while strange, loud, and crowded, it was also familiar in a way, and familiarity is comfort. I knew all the songs from the movies, and recognized characters and sights. I knew that I’d have fun on the Dumbo ride, I knew that the castle was awesome, and I knew that women in giant princess ballgowns were sweet and kind. I remember I was obsessed with Kida from the (highly underrated) Atlantis movie and spent my entire vacation hunting down a pin depicting her and begging my mom to help find her – which she did. I still have it, it’s one of my favorites.

kida pin

There’s a few good ideas to keep in mind when considering a Disney vacation when on the spectrum. My best suggestion is to go during off-season if it’s possible, when there’s the least amount of people. I was recently at Epcot during their food and wine festival the day before Veteran’s Day, and the most overwhelming part about being there was the sheer amount of people flooding the streets. It’s very hard to find a quiet corner to decompress in a situation like that. Bathroom stalls sorta work, but if you’re female there’s definitely going to be a crowd/long line most of the time. To decompress, I suggest finding out which rides are relaxing in whatever park you’re going to. If you’re sensitive to noises and need some quiet, I’d suggest just flat out bringing noise-cancelling headphones. They play music everywhere.

Remember to eat to keep up your energy. I forget this sometimes. When I was at Epcot, all three of the people I was with around dinner said I looked like I was fading and completely out of it when it was late and we still hadn’t eaten. After dinner, I was much better, even though I hadn’t realized how low I’d gotten because I was so focused on my feet hurting (bring comfortable walking shoes!).

And speaking of food, for those out there with refined palates, aka, ‘picky eaters’ like me who are sensitive to certain tastes or textures and are cautious about eating at new places, look up menus online in advance if you’re planning to eat at a restaurant to make sure there’s something you want to eat there. It’s a small way to ease up some of the stress you might otherwise feel. Or, consider bringing your own food in a backpack. It saves money, and you ensure you have something you’re willing to eat. If you are eating at a nicer restaurant, especially for dinner, rather than one of the more ‘fast food’ type places, I highly suggest getting reservations online in advance. We were wandering around looking for a place to have dinner around 6:00 PM, and one place we talked to told us to come back at 8:45 PM to see how bad the wait would be then, with no guarantee that we’d be seated.

Avatar Land food
Food from Animal Kingdom’s new Pandora section

The most important suggestion I have is to make sure that you have at least one person with you who makes you feel safe. I’ve almost always gone only with family in the past, and family is safe and comforting. In retrospect, I think that’s why I’ve never had any real problems with carnivals or theme parks in the past. In my adult years, when I’ve gone without as much support, I feel more vulnerable and find myself becoming overwhelmed easier. But when I go with someone I feel is a strong support – like family, close friends, or my fiancé – I’m able to handle things without any problem that on my own I’d probably find too much. There was one time I was in Magic Kingdom on a special school trip first to the Kennedy Space Center, then Magic Kingdom, and I got separated from my group. It was harrowing, and suddenly the plastic magic didn’t seem so familiar. Don’t go without someone who you trust and are comfortable with by your side (or an emotional support animal if you use one), because their support makes all the difference between a wonderful, incident free fun time and feeling panicked.

Norway
My fiancé and I with the troll in Norway’s gift shop in Epcot

One more small suggestion. If you can, don’t plan your trip so that immediately after you return home, you have to jump back into work or school. A day to relax after your vacation can be an invaluable way to decompress and enjoy some quiet time.

On an unrelated note, Epcot is my favorite of the four main Disney parks. I love the collection of unique architecture and culture, the foods, the sounds. I like the idea of being able to learn and experience these things. I had the pleasure of introducing my fiancé to it for the first time, and was thrilled to see him find that same enjoyment in it.

Though I have to say, I’ll never truly forgive Disney for turning Maelstrom into a light-hearted Frozen ride. [sigh] At least I have my memories.

 

Do you enjoy theme parks, or are they too much? What sort of coping methods do you use?

Which theme park is your favorite?

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.

 

While I’ve never used disability services at Disney before, here is a link for those who might want more information as to what Disney does to assist autistics: https://www.orlandovacation.com/disney-world/special-needs-guide/guests-with-autism/

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.

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Sexual Assault, Autism, and the case for Comprehensive Sex Education for Autistics and the Disabled

Trigger Warning: Sexual Assault discussion

I am lucky as a disabled woman in our society. I’ve never been raped or seriously sexually assaulted, unlike so many of my peers. When I say ‘seriously’, I mean that no one’s ever held me down, no one’s gone under my clothes without permission, no one’s not accepted ‘no’ for an answer. Not that other forms of sexual assault aren’t serious, but I don’t quite know what other word to use to differentiate between what I’ve experienced, which has been relatively minor, and the deeply traumatic pain that’s been inflicted on others to an extent I can’t comprehend. With that disclaimer for the limitations of the English language, let’s discuss what I have experienced and how it applies to the topics of sex education and autism.

I have had a few brushes with inappropriate men in my life. Two in particular stand out to me, since I’m going to ignore common things like catcalls for now (they’re their own nightmare for another time). The first happened in seventh grade, at twelve or thirteen years old. I was in the school musical, and we girls were backstage in our dressing room getting on costumes and make-up. Without any warning, announcement, or request for permission, the videographer the school had hired to film the production decided to barge in and record us. Most of us were at least half naked, or in only underwear. He was a grey-haired, older man. I still remember the creepy, wide, toothed smile he had on his face as he ogled us. He seemed entertained by the panicked reaction he’d gotten. I was infuriated instantly at the sight of him, at the gall he had to do such a thing, and put myself between his camera and some of the practically naked teens and pre-teens who were trying to hide their bodies from him to try and ruin his shot. I screamed at him to leave. I believe some others shouted at him too, but the details of that are fuzzy because I was hyper focused at the time. He was practically giggling with how giddy he was, but we did get him to leave.

Later, he was instructed by one of the adults to come up to me privately and apologize, as if I were the only one offended because I’d been the loudest. It was explained to me that he was simply trying to get filler backstage content, and that it wasn’t that big of a deal, that lots of films about stage shows and musicals had that sort of footage of actors getting ready, but that he was sorry he’d offended me. I don’t remember what I said, but I remember questioning myself as to whether it was a big deal or not, since none of the adults seemed to think it was to my knowledge. I never mentioned this incident to anyone until recently when talk of the appropriateness of authoritative older male figures barging into pre-teen dressing rooms came into question during an uncomfortable conversation. I realized it had happened to me, and how deeply wrong that is.

The second incident happened in tenth grade, when I was a little older. My school had a fencing team, and the coach had always been just on the edge of being possibly uncomfortable to me, but never crossing any lines – or at least not being reported for it. I do recall him grabbing one of the moms he knew was married and kissing her on the lips against her will, without being reported for it. I said nothing because I was a child and she was an adult, so I figured if she didn’t say anything then it wasn’t my place to. Other than that, he always gave me the vibe of someone I shouldn’t let myself be alone in a room with for long. He would sometimes get a little too close for comfort with me. When I asked about buying my own gear, he said I could buy the standard ‘male’ outfit, but I’d look a lot better with the female tailored outfit to show off my curves (I was fifteen). When giving awards to those participating in a competition he would shake the hands of all the male students and kiss the cheeks of and hug all the female students. Those who know me well enough know that I absolutely loath hugging people I’m not comfortable with, and kisses from people I don’t want kisses from make me want to scream for multiple reasons. But I grit my teeth and dealt with it because I didn’t know how to tell him not to without coming across as reading too much into it, or as ‘weird’ for not being okay with something everyone else felt was normal (back when I refused all hugs from non-family I’d been accused of having ‘something’ wrong with me, and for a long time I lived in fear of coming across that way). The action that went over the line was when he decided it was appropriate to lay his hand on my behind. I had a fencing sabre in hand and instinctively spun around and struck him with it, causing him to berate me for attacking a teacher while I screamed in tears that he wasn’t allowed to touch me like that. It was an embarrassing, confusing spectacle in front of the whole fencing team. I stormed out when he wouldn’t apologize and walked home early from school.

I remember thinking to myself… maybe he didn’t mean it the way I thought he did. Maybe it was appropriate in some ‘sporty’ way. Maybe my pants were too tight – he’d commented on my tight clothes before. Maybe somehow it was my fault, or I’d read the situation wrong. These thoughts shocked me because I knew they were wrong, but they wormed their way into my mind anyway. What kept me secure in the knowledge that he had done wrong and I had done nothing wrong was the education I’d received about my rights to my body, and also my right to defend myself. The confident message I’d always received from my parents that no one had the right to touch me if I didn’t want them to. I mustered my courage and went to the principle first thing the next school day. The coach was fired – which I’m grateful for considering how many schools don’t handle sexual assault well – and I never saw him again.

These are ‘minor’ things in the grand scheme of sexual assault, but I want to talk about them for a very specific reason: how I conducted myself. I didn’t put up with it. I knew consent was something I needed, and that it wasn’t okay for men I didn’t want to film me nearly naked or touch my privates. I’d been taught about consent, and had classes on comprehensive sex education. No means no, and nothing else.

Not all autistics or disabled people get that education. In fact, when it comes to mental disability, it’s sometimes not just neglected completely, but messages opposite to ‘no means no’ are taught.

Five-year-old Johnny doesn’t want to hug his parents. His therapist tells him he has to. He shakes his head, he avoids eye contact, he tries to wiggle away, he has a meltdown, he gives every signal he can to show how deeply uncomfortable and physically painful this is for him. His parents think it means he doesn’t love him because they can’t understand that physical contact and love aren’t necessarily connected. His therapist spends hours, weeks, years training him to hug on command regardless. His no does not mean no. He is not allowed to say no, because his therapists and his parents don’t believe he has a right to his own body.

When Johnny is in middle school, his parents don’t let him take sex ed because they feel it’s not something someone with his neurology needs. Then his PE coach makes inappropriate comments that go unchallenged. The coach makes him give hugs that last too long after class. The coach slides his hand between Johnny’s legs. The coach says they should shower together, that it’s okay and it’s what adults do. The coach wants to show Johnny other things adults do. Johnny obeys because he’s been taught and trained and forced to submit by his parents, his therapist, and his teachers. He’s been taught that his body isn’t his, and that he has to do what others tell him to do, even if it makes him uncomfortable, if he doesn’t want to, if it doesn’t feel right, or even if it hurts. He doesn’t know it’s wrong. He learns what sex is from his coach. Sex is a painful act forced on him for the purpose of someone else’s pleasure. He has never learned anything to tell him that’s wrong, that sex is supposed to be something else, something good. That a relationship isn’t supposed to hurt.

There are a lot of horror stories around compliance training – most I hear about come from traditional ABA therapy. Therapists forcing their young clients to hug on command, and those clients growing up not to have a concept of bodily autonomy, making them perfect victims for sexual predators. I’ve read the stories of victims and survivors, and it makes me sick to my stomach. I think of all the people out there not taught about sexuality or healthy relationships because it’s deemed inappropriate for their autistic brains, despite them potentially being sexual beings like all other teens and adults.

I think how easily that could have been me if I’d gotten an early diagnosis and my parents had sent me to a bad therapist simply because they wouldn’t have known any better.

Maybe instead of trying to keep that videographer from filming us, thirteen-year-old me would have just stood there and allowed myself to be filmed in my underwear by a man old enough to be my grandpa. Maybe he shows me that inappropriate footage and tells me that if I don’t take off the underwear in private, he’ll send the film to my classmates and parents. Maybe instead of getting my fencing coach fired, fifteen-year-old me would have remained quiet, giving him the ‘signal’ that I wouldn’t report him if he progressed to more horrific actions.

Not being labeled as autistic or disabled may have saved me from a terrible fate, but I shouldn’t need to suffer through nearly two decades without a term for my own brain to have access to the education to learn to stand up to assault, to learn about healthy sexuality. Autistic and disabled people deserve appropriate, comprehensive education. We often have mature sexual bodies. We need to learn about what that means. We need to have full knowledge of the concept of consent, and about what healthy relationships are like, what they look like with us in them. Healthy relationships are about mutual respect, friendship, love, and potentially also include pleasurable sex (including lgbt+ sex – not all autistics are straight). While this is desperately needed for everyone, I feel there’s a heightened need for those of us with social disability to have education on this because social norms are something we need to learn across the board. A relationship is a social construct, and if we aren’t taught about them in a good way, there’s the potential for someone to teach it to us in a bad way.

If you are the parent of an autistic, don’t assume that because of their difficulties (non-verbal, no eye contact, intense stimming, severe sensory disorders, or any other issues) they don’t need to learn about adult matters. Consent is not a luxury for the able-minded or able-bodied. Autistic children become autistic adults. We have adult bodies and we need to know about them, about our rights to them. I am what happens when you do things right – a strong individual capable of standing up for her right to say no and eventually finding fulfilling, happy, healthy relationships in the dating world. Your child, who will become an adult, should be too. Please, don’t neglect us.

Thank you.