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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My Experience with Braces and Retainers

A while back, I had an interesting conversation with a mom who was concerned about the possibility that her autistic child may need braces down the line. As someone who’s autistic and who had braces for several years, I volunteered to talk about my experience. Now, I think this might make for a good post for others to read. I don’t necessarily have great advice as to how to cope with braces, since I’m not sure how well I did coping myself. It was just something I knew I had to do, and at the time I thought of braces as teeth jewelry, so part of me liked the idea of them and was willing to put up with them because I thought they were beautiful. But that aside, almost everything about having braces was awful.

Braces definitely caused me serious sensitivity issues. That was the most memorable part of braces. I’ve always had very sensitive teeth, to the point that I don’t like drinks with ice in them because the cold hurts my teeth. When the braces were put on, it tasted awful in my mouth, and felt uncomfortable. I sat through it because I knew I had to and I’ve never had an issue with the dentist, but it was really awful. Every little adjustment that was made hurt, and the rubber bands that tugged at my teeth made it difficult to open my mouth.

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Image is of me at age sixteen with braces.

Eating was awful. For up to two weeks, even biting a blueberry after an adjustment was painful. I had a lot of soup, yogurt, mashed potatoes, ice cream, and other such mushy food I didn’t need to bite. I also have always had a bit of an unhealthy oral stim of biting my lip, and since I couldn’t do that well with my teeth encumbered by braces, I ended up rubbing the insides of my cheeks against the metal, where it would get caught and eventually scar. I honestly don’t remember what my mouth felt like without scars lining the insides of my cheeks. I’m also fairly certain that the slight indents I can feel on my lower lip are a result of braces and rubbing against them as well.

I didn’t know I was autistic at the time when I had braces, and I think that knowledge might have helped me figure out how to cope. There were some nights I went to sleep crying, but I did my best to hide that from everyone else because I didn’t want to be seen as being overly sensitive – I already was too sensitive, reacting to anything I had to bite too much, finding it all too uncomfortable. There was an object in the kit the orthodontist’s office gave that included a rubber bite piece that was meant to be bitten on to somehow help with the pain. I never quite understood this because biting down hurt, but it did have a soothing texture, so sometimes I’d just put it in my mouth as a distraction without biting. In retrospect, I suppose this was a type of stimming.

I’ve never had an issue with dentists, probably because I associated them with stickers for a long time, which were enjoyable. I also liked the sensation of the water and the suction tube that got rid of the water. It was interesting and kind of fun, so I never felt any anxiety about the dentist or orthodontist. As such, I didn’t really develop any coping mechanisms I can talk about. What I do want to talk about is retainers.

 

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Image is of me, likely around the age of fifteen, with braces on my teeth.

I think one of the important things to consider before either getting braces yourself or getting your child braces is retainers. No one told me at the start of the process that I would have to wear a retainer for the rest of my life to keep my teeth straight, or they’d go right back to being crooked. My teeth aren’t all that bad. I have a slight under-bite and the front of my lower teeth are a little crooked, but they’re really not all that bad. So, the prospect of wearing a severely uncomfortable piece of unforgiving plastic and metal in my mouth every night for the rest of my life to just keep my bottom front teeth from being a little off was unacceptable to me. It wasn’t worth it. When I asked how much longer I’d have to wear the retainer and they told me forever, I remember something in my head flipping and thinking, “Nope, I’m done.” I stopped wearing my retainer, and essentially made the whole experience a massive waste of money, pain, and time for everyone involved. That’s the most important thing to consider – will your child wear the retainer for the rest of their life on their own, or will they find the sensation too uncomfortable and abandon it when they get the chance?

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Image is a slightly creepy looking close up of my teeth as they are now, with my lower front teeth a little crooked.

I’m not an expert on teeth, so I won’t claim to know for certain if there’s something braces can fix that doesn’t require a retainer. In which case, if such an issue exists, maybe it’s worthwhile to have braces. All I can say for certain is that for me, that wasn’t the case. And, I definitely think that if braces are just there to fix something relatively minor, like the slight crookedness in my lower front teeth, then maybe consider that it’s just something that it’s okay to live with. I’m not going to have serious health problems because of the minor crookedness in my lower front teeth. It’s not severely out of place to the point of being a social hindrance. And so, I vote in favor of thinking critically about whether all that pain and money is really worth it for those considering braces, especially if you’re autistic and have sensitivities or anxieties about the dentist that non-autistics might not have.

If you have a real issue with your teeth, something more extreme than my slight crookedness, then it might be worthwhile to get braces. Talk to a dentist about the repercussion and make an informed decision. If you are making this decision for your autistic child, be as understanding as possible – the pain is something they might not know how to handle, and needing comfort objects or easy to eat food for a long while may be what they need to do to deal with it. I remember the pain lessening a little, but I was afraid of it still, so I still wanted soft foods. As long as the soft foods include healthy foods, there’s nothing wrong with that, and let your kid go at their own pace. Regardless of how crooked your teeth are or aren’t, remember to brush and floss!

 

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.

Why I Don’t “Light Up Blue”

“Light it up Blue” is a campaign for autism awareness started by Autism Speaks, which most autistic adults consider a hate group. For those confused as to why autistics generally don’t like Autism Speaks, think of it like this:

Imagine there was a group called “Homosexuality Speaks” run almost entirely by straight people who put all but 4% of their donations towards advertising for themselves and funding research on how to identify the gay gene in utero so that parents could abort gay children and fight the gay epidemic, as well as finding a cure for homosexuality. As they do this, imagine that these straight people gain popularity as “the voice” of the gay community, all while they actively do their best to silence gays from being allowed to speak up on their own behalf. Pretty sure the LGBT community would not support them. So that’s why most autistics don’t like Autism Speaks – they do not speak for autistics.

Anyway, since it is now “Autism Awareness Month”, I wanted to discuss the specific color blue, the concept of awareness, and how it relates to autism.

The color blue was chosen to represent autism because the people choosing the color thought that autism was a ‘boy’s only’ club. They chose blue because it’s associated with the male gender, and they wanted to exclude all women and girls (and, it’s safe to assume, all others as well) from the autism spectrum. I don’t believe this was out of any sort of malice, but simply ignorance. Which, once you learn better, no longer excuses it. I cannot “just wear blue to support autistm awareness!” (as I have been told to ‘just do’) because I will not wear something meant to represent my condition but also meant to exclude me because of my gender.

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Image is of a blue mustache labeled “It’s a boy”

Which is a real shame, because I look good in blue – it’s one of my favorite colors – and I loathe that it was ruined in the month of April by this campaign.

Now, you might say, “Well, that’s what it used to represent. It doesn’t anymore, now it’s all autistics! It’s just a support thing for awareness!”

There’s several things wrong with that. The first is that blue has been chosen by a specific brand to represent their specific brand of autism awareness. That awareness includes telling autistics that they are a burden on society, that we destroy marriages, that we cost too much money, that we are tragedies, that we are an epidemic, and that we need to be cured because they see autism as some sort of antagonistic disease rather than a type of person. “Light it up Blue” is tainted by that message, and so if I were to wear blue, I would not be supporting autistic people. I would be supporting the organization that wants to prevent people like me from being born.

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Image is of two children, a boy and a girl, with the boy covering his ears to block out the sound of his parents, who are arguing behind him.

The second thing that’s wrong with that sentiment is the idea of ‘awareness’. People are aware autism exists. Acknowledgement of the condition’s existence isn’t what autistic people want – we want acceptance. You might think that these two are the same, or similar enough, but acceptance means understanding that some autistics might need special considerations, while awareness promotes fear based on stereotypes. In my experience, awareness shows off how strange, weird, and ‘other’ autistics are, with the underlying message of how autistics need to be changed to fit a more ‘normal’ box, or how we need to be cured/prevented from being born to wipe out this epidemic. Saying things like “one in every sixty-eight children is diagnosed with autism” sounds scary. It’s reminiscent of showing statistics like “In this year, this many people were diagnosed with cancer – here are things to avoid to lessen your chance of cancer.” It wants to create fear – that’s awareness.

Acceptance shows that autism doesn’t have to be scary. Acceptance says, “sometimes someone who’s autistic can be highly sensitive to loud noises, and may wear headphones to help cope. Please do not take them away, insult, belittle, or tease them, as they are simply trying to avoid something painful.” Acceptance means accepting that cutting the corners off of a square peg to fit into a round hole is painful for the peg, and maybe we just accept that it’s not necessary. That we should let people be different, and accept what supports/accommodations they may need rather than forcing them into a mold that doesn’t fit.

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Image is of a square peg, with its corners broken by a hammer, forced into a round hole.

So, what can you do to support autistic people on this most terrifying and overwhelming of months, April, aka ‘Autism month’?

Well, if you’d like to donate, find a good organization, one by autistics, for autistics, focusing on accommodations and assistance rather than promotional material and research. Two good organizations are the Autistic Self Advocacy Network (http://autisticadvocacy.org/) and Autism Women’s Network (https://autismwomensnetwork.org/).

As to colors, the acceptance campaign I am the biggest fan of is Red Instead. It’s exactly as it sounds, and I like the idea of red because it’s the ‘opposite’ of blue – though not pink so that it isn’t strictly a ‘girl’ thing the way blue was chosen. Tone it down Taupe and Light it up Gold are other alternatives, but I’m a fan of red.

Red instead
Image is of me with my husband, and I am dressed in my favorite red dress, with a necklace that has a red gem.

I would also like to give a short opinion on the puzzle piece symbol. I get that some people like it – it’s visible, kinda cute, and a well known ‘autism symbol’. However, I’m not a fan. For one, it’s usually in blue. If it’s not blue, it’s in bright primary colors. Aka, it’s a little childish. There’s enough of a problem with people infantalizing autistics and assuming we’re all children that I don’t think we need to have a symbol alluding to support of that notion. The original puzzle piece was meant to symbolize what a puzzle autistic people are, how mysterious autism is, and how autistic people are ‘missing a piece in the puzzle’ of our humanity. That sounds a little too close to “elevator doesn’t stop at all floors, not the sharpest tool in the shed”, etc. I don’t think I’m a puzzle if someone gets to know me. It takes some effort, but autistics aren’t mysteries. We’re people. Some people think it’s a cute symbol, and if they like it, that’s up to them – sorta similar to how if someone on the spectrum wants to be called ‘person with autism’ rather than ‘autistic’, it’s completely their call. Personally, it’s not for me. I like the neurodiversity symbols like a rainbow infinity symbol or a rainbow colored brain. I think it’s more representative of who we are. Our brains our different, and there is a spectrum of what autism is.

For those who are curious here is a picture of the original puzzle piece symbol relating to autism. I hope that it’s understandable why I don’t care for it:

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Image is of the original logo by the National Autistic Society, depicting a child’s crying face on top of a green and black puzzle piece.

 

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.

New Autism Magazine – Masking, Issue 1

Recently, I was in contact with the amazing Olivia Armstrong to do an interview for a new magazine, Masking. It’s all about showing autistic voices talking about issues that matter to the autistic community. This is great for everyone to read – whether you’re autistic yourself, have a family member or friend who is, or just want to be more informed. It’s well put together and well written, highly suggest a read!
Here’s my contribution, a section about gender bias in diagnosing autism:

“It took 19 years for someone to suggest that I might be on the spectrum, after years of therapy and obvious symptoms, such as meltdowns, growing up. These were labeled tantrums, and I was considered to have anger management problems. Girls are socialized differently, so if you’ve got a social disability and are being judged against criteria set up for a group of people who are trained from birth to socialize differently from you, there’s going to be a difference and people won’t pick up on it. You don’t fit their mold.”

“There’s theories out there that being autistic means I have a male brain. I don’t see how that’s possible, since I feel female and am very happy as a female. It feels kind of dismissive of my identity as a female to say that I must be male in some way to have the neurology I do.”

“For a while I was told I was possibly bipolar. This didn’t stick because I didn’t get the right sort of mood swings, but suffice to say it took a while and several bad theories before realizing that ASD fit me perfectly and explained everything.”

That’s just a small portion of the amazing autistic voices in this magazine, and I highly suggest giving it a read to support this emerging journalist! To show her you want an issue 2, show your support by voicing it on social media and liking her magazine’s twitter page (@MaskingMagazine)

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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.

I Should Not Be Allowed a Gun

I should not be allowed a gun because I have struggled with my mental health.

CW: talk of suicide, depression, domestic abuse, and gun violence

Today, people around America are standing up for their right to live by marching to demand common sense gun control reforms. Many people will likely take this opportunity to discuss mental health once again. As such, I would like to explain why I should never be allowed to buy a gun. And the why is very important.

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Image is the “March for our lives – Parkland” logo

I should not be allowed a gun, not because I’m autistic. Not because all mentally ill shouldn’t be allowed guns. Rather, because I’ve struggled with severe depression in the past including suicidal thoughts. I should not be allowed a gun because if I ever go back to that and have a severely depressive, lonely night because some chemical imbalance in my brain wants to kill me, I don’t want to have the option of an easy way out. I want to make it to sunrise. I don’t anticipate this sort of depressive episode happening, but I’d rather not take that gamble with my life, and I want others to support my right to life by ensuring it will not be easily ended.

In the wake of any mass shooting, there is almost immediately a spotlight turned onto mental health. Which, mental health systems do need massive assistance and adjustment, yes. But not because of shooters. Simply because we have a bad system.

We shouldn’t ban the mentally ill from buying guns primarily out of fear that they’re going to go on a shooting spree. We should ban only those who show tendencies towards suicidal thoughts from getting guns to help save their lives. Plenty of people with mental conditions are completely harmless to both themselves and others and may enjoy hunting or want something at home for protection – if they want it and are responsible, that’s their call. Heck, my own grandpa has a gun at home, and I’m 100% certain that if he were to be evaluated, he’d be diagnosed as somewhere on the autism spectrum.

This does not mean psychologists and psychiatrists turning over all their medical information to some database for cops – that opens the door for far too many moral problems, and psychologists are already permitted to inform cops if they feel their patient is a danger to themselves or others. I feel this should just call for a psychological examination before someone is allowed to purchase a gun. We make people take written tests, practical tests, and vision exams for a driver’s license before they’re allowed a car – why not have tests appropriate to determine responsible, capable gun ownership?

Unfortunately for us, the government sees good, long-term psychological care as more expensive than a single bullet.

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Image is a stock photo of a depressed boy holding a gun

Every time a shooting happens, I hold my breath to see if the shooters were autistic. And some have been – but that is not the reason for the shootings. If they are, then there’s a new batch of fearful and hateful posts/comments about us online. But these shootings are not the result of all those dangerous autistics out there. Autistic people are statistically far, far more likely to be the victims of violence rather than the perpetrators. Shootings happen because (primarily) white men and boys grow up feeling like they’re entitled to ‘get the girl’ and ‘the job’ and ‘the salary’ and ‘success’ – often at the expense of minorities and women. The Parkland shooter had swastikas he engraved into his weaponry, a history of white supremacy, and targeted a place where the population is 40% Jewish – that has nothing to do with autism. There may likely have been other factors to his motives, but no one can pretend that it wasn’t a major influence. These shooters learn to hate those who get success over them or turn them down, that hatred brews, and they have easy access to a militaristic arsenal that doesn’t do background checks to see if they’ve been convicted of domestic violence – the thing that more shooters have in common than possibly even being white, straight males. My belief is that shootings happen because the shooter wants to either punish someone or gain notoriety, or both, and they have ridiculously easy access to weapons that will let them kill a room full of people in seconds.

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Image is of a screenshot of a news article’s title: “Florida shooting suspect [name removed] ‘etched swastikas into ammunition magazines used in massacre'” “Gunman was armed with 330 rounds when he opened fire on pupils and staff at Marjory Stoneman Douglas High School”
Regardless of the individual manifestos of each shooter, stop blaming autistics and the mentally ill. We have enough troubles without the world treating us like we’re all dangerous.

Don’t ‘walk up’ because you’re afraid if you don’t, you’ll be shot. Don’t pressure students to just be nicer to each other to avoid gun violence. That’s the same as telling a victim of domestic violence that if they’d just stayed with their abuser, then the abuser wouldn’t have stalked and brutalized them. If someone is actually that hateful and dangerous that they might kill the people around them, telling potential victims to be around their potential killer is not a good thing. If there had been a misogynistic white supremacist at my school, I wouldn’t have wanted anything to do with that nonsense.

Bullying is a problem. Mental health is a problem. But speaking as someone who both struggles with mental health and was bullied significantly by students and some school administration alike, I can guarantee you I have never even considered ever actually harming someone else over my grievances. Mentally ill children are bullied every day and grow up without turning into mass murderers. Also, if bullying really was the main cause of mass shooters, you’d see a lot more variety in the shooters – LGBTs, women, POC, disabled people, etc.

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Image is stock photo of a sad young boy walking by students who are making fun of him

If you ‘walk up’ to someone, don’t do it because you’re afraid. Don’t ask a quiet introvert, “Hey, we’re cool so you won’t shoot me if you end up shooting up the school, right?” If you ‘walk up’ to a quiet introvert or the autistic kid, do it because you are a decent human being with empathy and want a new friend. Don’t be afraid. We’re actually pretty cool once you get to know us. A lot of us are just too afraid of social rejection to try and make friends on our own.

Walk out and march if you can, call your representatives if you’re able to, write emails, sign petitions. If our voices are strong enough, I believe we can make a change. Common sense gun reform is supported by the majority of the country – even the majority of responsible gun owners. If we demand it, the government will eventually have no choice. And if they don’t help us, then we will vote them out and put in someone who cares more about lives than NRA donations.

I couldn’t march today because walking that much would be bad for my leg, but I want to be a part of this and show my support regardless. Here’s me with my sign:

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Image is of me on my crutches with my sign that says, “Our lives should be worth more than NRA $”

 

This post is dedicated to those who lost their lives on February 14, 2018 while at school and those who remain to fight for their rights. It is dedicated to the parents, siblings, and teachers of victims, to all those who support common sense gun control. In particular, dedicated to one of my best friends who is an alumna of Marjory Stoneman Douglas High School and is in DC marching for her school. Wish I could be there with you, and support you 100%.

 

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.

Toilet Talk

Let me just put this out there: don’t detail your disabled child’s bathroom struggles online or in print. Or anywhere. Unless you have their explicit, informed consent, don’t even think about publicizing it.

Warning about the tone for this post; I’m pretty angry. I wanted to finally sit down and write about what it’s like to travel to a foreign country as an autistic (no idea when I’m going to be in the mood to write that at this point), but there’s a new terrible hashtag full of ‘Autism Moms’ (and probably a few dads, but it really is majority moms) spouting nonsense, harmful debunked conspiracy theories about vaccines, insulting autistic adults, and detailing how they never wanted to take care of a disabled child. So I’d like to address just one aspect of this, one that is far too common even beyond the anti-vax crazies. Here it goes.

When an older child wets themselves in public, they don’t want the whole world to know. Yet, there’s a certain brand of ‘Autism Moms’ out there who feel it’s a badge of martyrdom pride that they cleaned their child’s waste.

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Image is of a medal labeled “Official Autism Martyr Mom”

Recently, one such mother attacked me because she believed that I don’t know anything about autism and specifically severe autism because I’ve never had to deal with an eight year son old pissing himself in public like she has.

Sure, I haven’t. I haven’t had a kid. I’ve helped with some children of others who have had this issue, but I haven’t raised them – and I will not name or indicate their identity because I value their dignity and agency.

At the same time, this woman has never been autistic in any way. Just because I’m not a parent doesn’t mean anyone gets to dismiss everything about my knowledge just because I don’t want to disclose when the last time I wet the bed was. That I don’t tell the world details about what my parents may or may not have had to clean up at what points in my life. For my reaction to this sort of silencing technique (You’re nothing like my child! You’re too high functioning! You can talk, so you’re not really autistic! This is my domain, RAWR!), see my post A Letter to Autism Parents from an Autistic Adult.

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Image is of a sea serpent rising from the ocean saying “How dare you speak out about autism! I am the only one able to speak about it! If you can talk, you’re not really autistic!”

I also have a question for you. Why would you ever tell anyone about such a private moment in your child’s life?! You think anyone wants to stand there soaked in their own waste due to fear or inability to control themselves and have the whole world know? Who benefits from the world knowing about this private, scary, humiliating moment? Certainly not your child. You, Autism Mom. You get pity points. Which, I fear, is all you want from your child anymore, because too many of you have written off your children as forever doomed, damaged, and practically dead – leading to irreparable damage to the children you’re supposed to treat with love.

I was in a class once where I was one of the better students. The teacher asked me to lead the beginning of class, because she needed to help another student. I didn’t know what the other student needed help for, but since the class was a subject I was confident about and I was friends with the other students (small class), I was okay with taking over and helping. I realized later as the teacher quietly helped and cleaned the floor that one of the children [neurotypical, to my knowledge – if that matters at all] who most would consider too old for such a thing had had an accident. And it was private. No one else realized what had happened. The teacher handled it right.

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Image is of an A+ graded school paper

Parents, here’s what you do if your child struggles with bathroom issues:

  1. Clean it up
  2. Get new sheets/clothes
  3. Wash your child
  4. Put your child in new clothes
  5. DON’T TELL EVERYONE

Seriously, don’t. Us older autistics generally don’t want everyone to know when we stopped wearing diapers. And if you ask, I sure as hell wouldn’t tell you if I waltzed out of the womb fully potty trained or if I wet the bed yesterday because it is no one’s business but my own. You are violating your child’s right to privacy and agency by telling the world about these things. And it’ll follow them.

“It won’t matter!” you might say. “My child is non-verbal and will never be capable of anything! The world needs to know my struggle!”

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Image is of a row of toilet stalls

Sure, maybe your child is non-verbal, incapable of independent function, and difficult to understand/manage now. But you know something? I’ve been reading plenty of writing from autistic adults who were there. They were non-verbal for years. Some still are. Some were institutionalized. Some probably were in diapers. They were told (or more likely, their parents were told) they would never be able to live independent lives.

And where are they now? Well, some of them ARE living independent lives, or more independent lives, decades later. They can learn, adapt, figure out how to navigate a very hostile world. (Please note that I am not attempting to speak for these people, out their individual struggles, or single anyone out. If any autistics who’ve experienced these things wish to comment their stories or link to their own articles/blogs/videos about their experiences, I more than welcome it. I want your voices heard.)

Back to Autism Parents: If your child finally manages to get themselves a job interview, and their potential employer does a search on them, the last thing your child will want their potential employer to find as a search result is a book by their mother with chapters dedicated to excruciating details describing what it was like to clean their waste when they were teens. “Was afraid of hand dryers at age eight and pissed themselves in public” makes a bad thing to have in mind when reviewing someone’s resume.

Or what about if they try dating at age forty? Their potential date googles them and the first thing they find is “My child constantly wet themselves until they were thirty! God, I just hated having to clean up their feces that specific very embarrassing moment when they were eleven and didn’t make it to the bathroom! Their crying was so annoying, this wasn’t what I wanted in a child! Here are all the details on that!”

Do you think that makes for good dinner conversation?

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Image is a stock photo of a woman in red sitting alone after a bad date

This extends to all other personal information that Autism Moms like to share about their children without their children’s knowledge or informed consent:

  1. Bathroom struggles
  2. Porn viewing habits
  3. Text messages
  4. Grooming struggles
  5. Executive functioning struggles
  6. Videoing/describing meltdowns in detail
  7. Anything personal and private about their children

Autism Parents, just stop this. You should love and care for your child enough that you don’t want to humiliate them. You sharing all this private information is not helpful, it harms autistics. It violates us.

Look, no one thinks it’s fun to clean up someone else’s mess. And it’s probably not what you thought you were signing up for when you had a kid, and you want to vent. Vent privately, not online for the whole world to see. Remember that this is the child you have, and you should love their autistic selves. Remember that your child is just as human as you, and treat them with dignity. If you think it’s a trial for you, just imagine for a moment what it’s like to experience what your child is experiencing for yourself. If you had a sudden case of food poisoning and made a mess all over your chair and the carpet at dinner, how would you feel if your mother took a picture of it and told all 500 of her Facebook or Twitter followers about what a burden it is to put up with a daughter/son like you?

Practice a little empathy. You’re supposed to be the ones who are good at that, right? Sharing this nonsense harms everyone:

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Image is a screenshot of a meme stating “I can’t wait for my 8 year old’s diapers to be delivered,” said no mother of a vaccine injured child, ever.

 

“I’m so happy my mother decided to share private, humiliating details of my most vulnerable moments because she wants to use my struggles to point the blame of my existence at anything other than her own genetics!” – said no child ever.

We are not ‘vaccine injured’. We are not ‘stolen children’. We are not ‘practically dead shells’, and we are not ‘missing’. We are the result of your genetics. We are your children. We are adults. We are part of this society. And we deserve basic human dignity. You owe your child respect.

 

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.

The Invisibility of Bisexuality and Autism

After my post discussing invisible disability, I was thinking about the concept of invisibility itself, and found myself drawing parallels between two aspects of my identity: bisexual and autistic. Also, it happens to be Bisexual Health Awareness Month in March, so I feel like it would be interesting to examine that intersection.

A little about my identity as bisexual: I didn’t spend much time in the closet. There was a girl I had a crush on from a group singing class I took, but I never quite realized what I was feeling, since at the time I associated that with boys, and then she stopped showing up. Liking boys was always easy, and liking girls was simply not a thing if you already liked boys. I also repressed the feelings I developed for a girl because it would have ruined our friendship. Her response to me jokingly saying “I’m a lesbian!” to test the waters was “God forbid,” which shut me down hard enough to not want to like girls. We no longer speak. It was just easier to be boy crazy than to consider both options.

I say I didn’t spend much time in the closet, because I didn’t truly acknowledge it was possible I was bisexual until I was in college and met a girl I couldn’t deny I liked. I told my dad over ice cream. He did a double take and ultimately decided that having double options seemed like an advantage. I told my brother on a family vacation, and he jokingly asked “boobs, butt, or legs?” followed by telling me he didn’t care as long as I didn’t bring anyone to the room we were sharing. I told my mom on the couch at home and shocked her since I’d only ever discussed crushes on boys with her. But even though I’ve never really hidden it from others, there’s something invisible about being bisexual. Especially being bisexual and in a heterosexual presenting relationship.

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Image is of a closed closet

I’m not entirely aware of how I come across to people, thanks to being autistic, but there was an interesting exercise we did in a gen-ed gender, sexuality, race, and class college course. We got into groups of four and had to guess what each person was – gender, sexual orientation, race, and class – then discuss it with the class to confront assumptions. There was a semi-feminine presenting gay male and two heterosexual females. All three assumed I’m straight (and for some reason thought I was biracial, possibly part Native American or Lebanese, which confused me since I’m very European). My sexuality is invisible.

If that class had added ability/disability to the list, they would have likely assumed I have no disability at all, because that too is invisible. For example, when I first met the lovely people who would become my in-laws, I thought everything went excellently. They were wonderful, intelligent, hippy types with lots of interesting stories and beautiful art in their home. Later on, my now husband told me they were worried I didn’t like them. Being autistic, I had no idea that was the message I’d sent out with my body language or tone. I’d had a genuinely enjoyable time. He asked if it was alright to explain me being autistic to them, and I said sure. Once it was out in the open, everything was cleared up, and we get along great. But me being autistic wasn’t obvious. I just came across as perhaps grumpy or uncomfortable. On a related note, it took nineteen years for anyone to suggest that I was on the spectrum at all.

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Invisibility Cloak from Harry Potter

My body is like a permanent invisibility cloak from Harry Potter, or invisibility cap if you like classic Greek mythology. No one knows I’m bisexual or autistic unless it’s explicitly revealed. Some people think that neither of these things even exist. That autistics are just undisciplined children in need of a beating, that bisexuals are just confused or going through a phase. It is hard to convince someone that just because I’m with a guy doesn’t mean I don’t like girls. Oddly, if I’m with a girl, it’s easier for people to assume I still like guys – or even only like guys – as if the whole thing is a performance for male attention. (Hint: it’s not. Evan knows that I’d leave him for Jennifer Lawrence and has come to terms with that!)

Performance is something I’ve learned to do to get by without even realizing it, mostly in masking autism (see my very first post, I’m Acting, for details). But sometimes I wonder if I’m supposed to be performing something else. Bisexuality and autism are supposed to act a certain way, and sometimes I wonder if I’m supposed to perform them ‘properly’ for the general public to believe me when I claim those identities. Maybe I should stim more than I normally would to non-verbally tell people I’m autistic so they won’t get aggravated if something like making phone calls comes up, because they can see that there is something “up” with me. I don’t because I believe in being myself, but sometimes wonder if it would help. With being bisexual, I feel a sort of pressure to mention that I’ve dated girls before to make myself “more legitimate” if talking to someone who’s gay or lesbian. Right now, I feel a pressure to prove I have an interest in girls because all anyone can see is my interest in boys due to who I married. I feel like I’m both supposed to be highly sexual to fit a stereotype and suppress overt sexuality to avoid fitting the same stereotype. When I was still dating around, I found that the majority of the lesbians I encountered didn’t want anything to do with bisexuals, because of stereotypes. There are some who will flat out state that they refuse to date bi girls on their profiles. We’re not “real” LGBTs, despite the B literally standing for bisexual. That we’re just going to cheat on them with men because we’re greedy and can’t be satisfied. They claim we’ll move on and date boys, because we’re just straight girls experimenting. We’re not, but if lesbians won’t date us, then eventually there’s a higher chance of us ending up with men because the dating pool gets skewed. I’ve actually only ever dated straight/bi men and bi women before, as a result of this.

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Theater masks

Joining the autistic community on twitter has been a breath of fresh air. I get to hear people talk about experiences like mine, and not be undermined with talk of how I’m not a legitimate part of their circle. Online, being autistic isn’t invisible – at least in the spaces I’ve explored. But I haven’t explored much as far as the online (or offline) LGBT+ world goes. Just like I was when I was dating, I’m worried about rejection. What if I’m somehow not bisexual enough or in the right way? What about all the LGs who don’t consider the B to properly exist?

People who say that bisexuality and autism don’t exist hurt our mental health. Invalidating a person’s identity with accusations that they’re greedy or poorly behaved hurts. It makes me want to avoid speaking with people. But, despite my social anxiety, I don’t.

I’m still bisexual if I’m married to a man. I’m still autistic even if I’m masking and making eye-contact.

It’s not a greedy inability to decide. It’s not bad behavior that needs to be beaten out of me.

I’m just me. The more visibility that exists in all identities, the more understanding will be cultivated, and the more acceptance we’ll receive.

 

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.

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Image is of my amazing husband and I just after our ceremony. He is the most wonderful husband in the world!