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.

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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!

Autistic Moments: Aversions and Sensitivities

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

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

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

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Image is of a swimmer sinking into a dark ocean

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

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

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

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

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

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

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

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Image is of a plate of gobi manchurian

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

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

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

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

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Image is of a variety of seafood

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

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

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

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

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

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

DISABILITY IS NOT AN EXCUSE FOR ABUSE.

 

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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Autistic Moments – Aversions and Sensitivities (text)

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

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

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

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

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

Wheelchairs and Autism: A Comparison of Visible and Invisible Disability

I spent half my honeymoon in France in a wheelchair thanks to a skiing accident that left me with a fractured tibia and a torn ACL, and so I have an interesting perspective I’d like to write about. I’ve never been physically disabled before, even in this minor, temporary way. There’s something very different in experiencing an obvious, visible disability and experiencing an invisible disability, and I would like to explore that topic.

 

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Me skiing on the beginner slope of Mont Blanc in Chamonix, France

Having a wheelchair for five days got everyone’s attention. Everyone looked at me. Even now that I’m only on crutches, everyone wants to comment on it, everyone offers to help. Strangers go out of their way to open doors, and they look at me with sympathy. People constantly want to help, sometimes to the extent that it’s annoying. For example, I could wheel around fairly well in France, to get to the buffet line. I was capable of putting a plate in my lap, filling it with what I wanted, and taking it to my table – except for some stations which were too high for me to reach. While it was kind of endearing and adorable (and sometimes useful for when it was crowded) to have my husband get me food, sometimes I just wanted to get it for myself. Then when I would try, I’d have people trying to help me, trying to do everything for me. It was bittersweet in a way. I appreciated the help, but I just wanted to feel less like a chair ornament. Sometimes, people helping me felt as if they were robbing me of the one thing I could do for myself.

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My French X-Rays

Then there was another side to this. We decided to go visit the village in Chamonix, France, where we were staying. My husband pushed me up hill, both ways, through the snow and ice so that I wouldn’t be stuck in the one building of the ski resort – something that I’ll always love him for. But it was kind of humiliating, to be perfectly honest. To not be able to do something as simple as travel a few blocks and get there by myself. I literally could not have gotten the wheelchair through those conditions on my own. My husband had to lift the wheelchair up over obstacles like ledges and snow mounds multiple times while I sat there feeling worse than useless. Every little bump or imperfection on the sidewalk was suddenly a big deal and a potential trap.

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Me in Chamonix in front of a statue

I thought it would be better when we got to the village, but I found that the majority of the shops and chocolate stores and such had ledges or steps to get into the buildings, and no ramps. The weather was beautiful at least, and the scenery was breathtaking, but there’s something truly humiliating about wanting to get a souvenir and having to wait outside the store like a tied-up dog while my husband went inside and brought things to the window to see if they were what I liked. I felt as if I were wearing a big neon sign telling everyone, “LOOK AT ME. I’M HELPLESS.” Whenever I saw a store that didn’t have steps to get in, it was a massive relief, as if I could take off that sign for a little bit. There was one place the owner saw us doing our little “look through the window and give a thumbs up or down” routine, and she helped my husband lift me up into the store, which was very sweet of her. Though, still, even when I was in that store, I could navigate very little. Things were a bit tight, and while I did manage to get to the corner where the souvenirs I wanted were, there was a second half of the store completely inaccessible to me on the second floor. And the counter-top to pay at was way higher than I was. It’s a strange, very uncomfortable feeling, because I really don’t want to have to ask for help (thanks to a mix of pride and social anxiety).

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Picture from Google Maps. Try getting over these in a wheelchair.

That brings me to something interesting – help. In a wheelchair, it’s obvious to the people around me why I can’t do something. There is a clear physical barrier explaining to everyone why I will not be climbing stairs. That’s the difference between visible and invisible disability, I think. I don’t need to explain myself to get help. If I want water, I can ask whoever is around and they jump to attention with, “Of course, no problem.”

I’ll tell you a secret. I can technically get water on my own. I figured out a way, for when I’m alone in the house. It involves scooting on the floor on my butt, takes a lot of effort, and more time. But I can do it. I technically don’t NEED the assistance. But no one around me would deny me assistance. They’d snatch up the cup from the floor if they saw me, and say, “Oh no, please, let me help you. You don’t need to do that.”

No one does that for invisible disabilities. In fact, even for physical disabilities that aren’t super obvious, our society far too often denies assistance. For mental disability, there’s even less understanding.

No one sees me staring at a phone number and instantly snatches it out of my hand saying, “Please, don’t hurt yourself over this. I’ve got it, who do you need me to call and what do you need done?”

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Picture is of a cell phone displaying “unknown caller”

Invisible disability is just that, invisible. And because it’s not instantly obvious why someone might need help, sometimes it’s ignored. At my busing tables job (which I can no longer do due to not being able to walk without my crutches), I told them before I was hired that I was not going to answer the phone, period. I don’t do phones because I’m autistic. I still got requests while I was there to both make a phone call and answer the phone. The reaction to my flat ‘no’ was, as far as I can tell, annoyance. I’ve tried explaining to people before the level of anxiety involved in phone calls, and why it’s such a big deal. People will often say things like, “You really can’t just pick up the stupid phone and talk for less than a minute?” I say, “I’m autistic, phones are difficult for me” and then I get handed a phone anyway because apparently the cure to autistic problems is to, “Just get over it.”

And you know something? I do it sometimes. I do make important phone calls. I am capable of it if I write out a little script first. I set up my own physical therapy appointment at a place I’d never been to, talking to a woman I’d never met, because I had to. It is the autistic equivalent of scooting along the floor on my butt with a cup of water in my hand. The difference is, no one’s going to take the phone out of my hand.

Visible and invisible disabilities are different. They’re treated differently, they feel different, they are just different. But there’s some major similarities. The biggest one I want to draw attention to is that they both need to be treated better by society.

People in a wheelchair should not get stuck outside of buildings like animals waiting for their owners.

People who can’t make phone calls and get a job to avoid jobs requiring phones shouldn’t be handed phones.

 

The world understands visible physical disability, but I don’t think it does enough to accommodate. It sort of looks on with pity, occasionally tries too hard, and looks away when it realizes that not much can be done in that moment, and it’s easier to ignore. The world pretends invisible mental disability is a thing that can be overcome with a walk through the woods, yoga, and a new diet, like it’s something that doesn’t really exist and accommodations for it are just suggestions since there’s no obvious physical necessity.

These attitudes need to change. There needs to be more than understanding and awareness. In America, or at least in South Florida where I live, I’ve noticed it’s far more wheelchair friendly than where I was in France. But still, I went to a restaurant and noticed that the path to the wheelchair accessible bathroom was extremely narrow to the point of just barely being manageable to someone experienced in navigating with a wheelchair, and half of it was blocked by a row of stacked baby high-chairs. That can’t be acceptable. But it is, because most people are able-bodied, and it’s not their concern.

I think empathy is the key. Inclusiveness, accommodations. If someone in the airport needs a wheelchair, don’t take them to their flight and dump them out into the waiting room for two hours alone. If they need to use the restroom, they could be trapped, and then you’ve humiliated them (luckily, my gate was directly across from the women’s restroom and I had my husband there to assist me). If someone’s autistic and needs noise canceling headphones at work, don’t tell them it looks unprofessional or anti-social and forbid it. These things actively cause people pain. Different kinds of pain, but pain none-the-less.

Be mindful of others.

That’s part 1 of my series of honeymoon blog posts. Part 2 coming up when I have energy again.

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mountains
View of the mountains from the resort

 

 

 

 

Autistic Wedding in the Woods

I got married yesterday on January 13th, 2018.

I can honestly can say it was best day of my entire life. My new husband is an absolutely wonderful man and I love that I get to spend the rest of my life with him. Since weddings are notoriously high stress, I thought that I should make a post about it while it’s still all fresh in my mind.

Reading vows at wedding
A photo taken by my aunt of me reading my vows to my handsome husband

 

Once the actual ceremony started, the stress mostly melted away, but earlier in the day, I’d be lying if I said I wasn’t a bit on edge. It wasn’t that I was nervous about getting married – I was just nervous something would go wrong. There were a lot of homemade aspects and little details I did with help from family and friends that I was worried might not work out or would fall apart, plus my hair in the morning took longer than I’d expected, meaning that I had about ten minutes to help set up and look over the reception hall decorations (which we did completely on our own) before I had to go to my parents’ house to get ready.

I realized the best thing to do to help deal with the stress of the day is to have someone with you who is completely chill. When the people around me were panicked, stressing, anxious, or in a rush, then I felt panicked, stressed, anxious, and needing to rush. Not that I didn’t feel stressed and anxious on my own, but having people around me who were helpful and chill about everything, telling me that it was all okay, that helped incredibly.

When I went to get my hair done, I was incredibly nervous. I haven’t had my hair done professionally in about eighteen years. I’ve had people play with it before, which always puts me a bit on edge, but I’ve never sat down as an adult in a hair salon and let anyone do things to my hair. My brother gave me a fidget cube recently, and between that and a very chill and helpful bridesmaid, I got through sitting still for three hours while someone I didn’t know well turned my hair into a beautiful creation.

Another thing that I did to help alleviate stress was doing my own make-up. While not everyone is comfortable doing their own make-up, I’m a million times less comfortable having someone else do my make-up, and I happen to know how to do it from years of performances. I would suggest doing your own or having someone you know and trust do it for you, to avoid strangers touching your face, assuming make-up is something you want. There’s no rule against going make-up less on your wedding day, even if you’re a bride, especially if it’s a sensory thing. You don’t want to be focusing on how heavy your eyelashes feel when you’re marrying someone you love.

Back of hair shot
Picture of my hair from behind

At the actual ceremony, I only vaguely remember there being people around us. I was hyper focused on my immediate area – on my handsome, charming Evan, on our officiant, on our wedding party, and immediate family. We were in a beautiful outdoor clearing in the woods, with a lovely canopy of trees overhead, and perfect weather. Being with my now husband made the stress melt, and I could just focus on us.

Tree Tops Park Clearing
People arriving and getting ready for the ceremony

Some people there were aware I don’t like hugs, and that was fantastic. I could greet people and be happy, without having to get overwhelmed too much by hugging a lot of people, about a quarter I’d only just met. Family, close friends, and children I have no problem hugging – for everyone else who went in for a hug, I gave light, quick hugs. A good excuse to avoid hugs at a wedding is to have your bouquet in front of you – though that only works so well because they then expect you to move it out of the way to wrap your arms around them. A better one is an elaborate hairstyle that might be messed up by hugs, or a very large poofy dress that makes it difficult for people to get close. They’ll still try, and if there’s people you want to hug it makes for an interesting challenge, but it sorta worked. Only problem with a large poofy dress is having to go to the bathroom. I managed by myself, thank goodness, so it is possible, if a little difficult. Make sure there’s a decent sized handicap stall available if you have a large dress like that – mine wouldn’t fit into a normal stall.

If you want to be 100% certain you don’t get unwanted hugs because you know it’ll overwhelm you, I’d say go as far as to have a sign somewhere that says “The Bride/Groom is autistic – please do not hug her/him! Thank you!” You can also have someone nearby informing people as they approach to please not hug you, so that you don’t have to tell everyone every two seconds that you prefer no hugs.

 

Evan walking up to ceremony
Evan, my husband, escorted by his parents into the ceremony space

The food we got to taste in advance, so I knew it would be enjoyable. I had one of my favorite comfort foods – garlic mashed potatoes – in the buffet, which made me feel great instantly. Food makes people feel good. Familiar food that you’ve tasted before to check for texture and taste is even better. Make sure that wherever you get your caterer from for any event, but especially a high stress event like a wedding, lets you have a tasting of all the foods you’ll get. It gives you an extra something to look forward to on the day.

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Getting ready to cut the cake with a sword!

One thing that was kind of annoying was that the music got very loud, louder than was comfortable. It wasn’t the only reason I stepped out a few times (friends were socializing in the cool night air outside, and I wanted to join!), but it was definitely a factor. It hurt my ears at some points. This is partially my bad: I hadn’t talked to the DJ in advance about not liking noises too loud like that. I’m the kind of person who’ll bring ear plugs to movie theaters. Make sure that if you have music of any kind – live band, DJ, chamber music quartet – that you talk to them about your needs and stress the importance. DJs in general seem to have a program that they stick to, and are hesitant to deviate even when asked. Lowering volume is deviating from their programming, and I think it needs to be stressed the importance of sensory issues to ensure that they get it. Not a universal truth of course, but a possibility to be aware of. If they start getting too loud, but you’re socially awkward like me and afraid of asking more than once for them to turn down the volume because you don’t want to come across as pushy, send someone you trust to tell them on your behalf. Another option could be to come prepared with earplugs for yourself, but that would likely be seen as being anti-social, so it’s better to just make the DJ listen to your request by stressing its importance in advance.

Libby up in Chair
My mother-in-law being lifted in a chair for the Hora

The same should be said of a playlist. If you are particular about what sort of music you listen to, you need to be firm about it. I had a playlist, of which I heard a few songs from it during the first half of the event. It wasn’t until my parents went up to the DJ and told him to actually play the songs we requested and specially downloaded that they started playing some of the songs I really wanted to hear. There were still a lot we didn’t get to hear, including family favorites and a few that were supposed to be pleasant surprises for special people. I wanted songs by the Beatles, the Monkees, David Cassidy, the Carpenters, Ofra Haza, P!nk, Mystery Skulls, and several others, and I heard zero from any of those performers. Maybe one or two played while I stepped out, but I had a significantly long song list that was neglected.

From this experience, I think the best advice I have for those who are picky about music is to make a playlist and enthusiastically and dramatically forbid anything not on the playlist from being played. This is a bit difficult because you need to make sure to have enough to fill the entire amount of time of the reception, but it might be worth it. If it’s not stressed strenuously, the DJ will likely slip into their usual programming.

I think I’m unusual in enjoying larger parties, like bar/bat-mitzvahs and weddings. I’m the sort of autistic who wants to be social, but is terrified of it. I love dancing, and with the right people there to make the space feel safe for me, I can get really into it and have a fantastic time, which I did! But for those out there for whom the idea of a large dance party sends you into a cold sweat, I have a suggestion. Go small, quiet. Invite a handful of close people – I’m talking six to twelve, more or less depending on your comfort level – and get married at someplace you’re comfortable like a family living room. Get someone you know, trust, and are comfortable with to get a quick license to marry from the state, and either have a nice home-cooked meal if someone’s willing to make it, get take-out from your favorite restaurant, or maybe go out to your favorite restaurant afterwards. It’s your day. You don’t have to do anything that makes you uncomfortable. Be with people who make you happy. Have food you enjoy. Have the atmosphere that makes you feel good. You do what you and your fiancé enjoy, and make your wedding something you’ll look back fondly on.

For me, I’ll never forget how happy I was hearing Evan read me his vows, and how glad I was I wore water-proof mascara while reading mine to him. He’s everything I could ask for in a husband, and our wedding day was a dream come true.

 

Evan being sexy.jpg
Evan waiting for me before the ceremony, looking very sexy in his tux

Tomorrow we pack for our honeymoon, and we leave on Tuesday to go to France. We’ll be back at the end of January, and I’m sure I’ll have notes about the autistic experience of traveling in a foreign country. Until then!

 

If you like what you’ve read, 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.

Sex, Sexuality, and Being Autistic

Recently, I was asked by a woman named Violet Fenn if I could answer a few questions about sex and sexuality for an article she was writing about the subject and how autistic people relate to it. I think this is brilliant, and you can see the article here:

No, autistic people are not sexless – our sex lives are as varied as anyone’s

The reason I say this is brilliant is because so many people out there assume that anyone who’s got any sort of disability is asexual. While there are certainly asexuals out there, it’s ridiculous to think we all are. Just because I struggle socially doesn’t mean I don’t have biological urges the same as neurotypicals. And since I’m a pretty open-minded person when it comes to this stuff, I thought I’d share with you the entire article I wrote on the subject, of which there was only room for a few paragraphs in Violet Fenn’s wonderful piece. Mom and Dad, maybe stop reading here? Warning – I don’t get too explicit, but I am very blunt, and the topic is sex. Read ahead at your own peril.

So, here is a discussion on sex and sexuality from the perspective of an autistic.

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I started out being really shy and awkward about people and particularly about touching. If a stranger touches me, I still flinch. But sex itself has never been a real difficulty for me. It’s the getting to that point of having sex that is. I’m pretty sexual in nature, so I love that side of me, but I don’t know how to flirt with someone new I’ve met. I have literally sent this text message to someone before: “I didn’t know you were bi… I am too, and I think you’re really pretty. Want to do something maybe?” Apparently this took her totally by surprise and is not considered legitimate flirting, though I thought it was. Ended up working out, funny enough, and we dated for a while. That was only real relationship I’ve had with someone I didn’t meet online, but in person. My other long term in-person relationship I met online, something that is much easier for me. We bonded over books, went on a few dates, and now we’re getting married on January 13, 2018, which is fantastic and I couldn’t be happier – post upcoming on wedding stress and honeymooning in a foreign country eventually!

With sex itself, it’s like it’s in its own box. Normally, I absolutely hate hugs from most people, with exceptions for most family, some friends, children, and significant others. But once I’ve decided I’m comfortable with hugging someone, kissing them, letting them be close to me, and we’ve decided “okay, let’s have sex”, it’s in a box of ‘it’s okay to be physically close to someone right now, and this is the person I’m going to be with for this,’ so there’s a comfort level in making that decision, then acting on it. I’ve never been with someone new spontaneously though, every time I’ve talked with them through texting or instant messenger before we did anything, so it was planned and I knew what was going to happen. Open communication is super helpful. Once I got past a sort of ‘you’re not supposed to like sex because you’re a girl!’ mentality and learned terminology for things, I got pretty forward with everything. I know how to put into words what I like, don’t like, want to do, don’t want to do, and that clarity is very helpful. With most of my partners – at least, the good ones – I’ve had conversations about the sex afterwards. So, questions would be like, “What did you like the most? Was there anything you didn’t like? What do you want more of?” and things like that back and forth. It can be a bit sexy to talk like that, so it’s not super clinical, almost like reminiscing and then getting excited for the next time. Most of the time – we talk via messenger or text, which is just easier for me in any situation. It lets me get my words right.

laptop

With sensory issues, sometimes I get easily distracted. Like, we have a metal bedframe and if it starts squeaking it can just ruin everything. Sometimes my mind wanders a bit, though I haven’t really told my fiancé about that because I don’t want him knowing that I might be thinking about a sewing project while we’re having sex. Sometimes I get too hyper focused on sex itself and tense about it, and then I can’t orgasm because I wear myself out and just don’t have the energy to try anymore. This is really frustrating, and sometimes leads to me crying and apologizing for having a malfunctioning body because I get worried I’m disappointing him in bed. My fiancé has been really supportive about it though. Whenever I get upset over it, he just tells me its fine, we cuddle a bit, and then he might suggest we watch some Netflix or something to relax together, which helps.

A sensory issue I definitely have is with the fan or air conditioning when we’re naked. I don’t like feeling cold air blowing anywhere down there, and that’s where the apparently stuck vent points. So most of the time I just try to make sure he’s between me and the vent, or we have the covers on over us. I use the heavy comforter like a weighted blanket, and having it draped over us makes me very comfortable so I can focus on what we’re doing.

gender symbols

I like some eye contact during sex too, since it’s all very intimate. But there’s different positions so if I’m not in the mood to focus on eye contact, there’s a bunch of alternatives. Even if it is missionary, I can just close my eyes sometimes, which helps focus on what I’m feeling rather than things around the room. My fiancé thinks it looks sexy, so win-win.

Something that I think helped me get comfortable with the concept of having sex, before I had an in-person boyfriend, was writing about it a lot. I guess you could call it erotica. I’d write what I thought it would be like, that it would be enjoyable, things I thought I’d like or wanted to try one day. So I had it at least a little mapped out in my brain as to what the concept was, making it less foreign.

I used to be really shy and awkward about anything sexual at all (my nickname in high school was ‘virgin ears’ because I’d blush and clap my hands over my ears when people started talking about anything too intense for me), and I wasn’t always capable of saying words related to sex, like there was a block in my brain. Once I was more familiar with it, I think I’ve become pretty sex positive and much more open to talking about things than most people are – which I have to remember to reign in sometimes so I don’t make others uncomfortable. I think being autistic means that I don’t see the strict lines that the rest of society puts in place. I don’t want to be completely open about everything, since it is a private matter between my partners and me, and I don’t want to discuss that without permission, but I’ve seen a lot of “society says this is how you perform sex and relationships if you’re a girl” and I just sometimes throw that out the window and go with what feels good.

bisexual flag

 

For example, realizing I was bisexual was strange. I’d always liked guys and had crushes on them, like society’s narrative says I should, but I only ever had one real crush on a girl before I figured myself out, and I hadn’t been completely sure what it was I was feeling. I brushed it aside and didn’t think about it for years, deciding to just focus on boys because it was a lot easier. Then someone pointed out to me that they saw me looking at girls and I realized, oh, they were right. I didn’t have to just like guys or girls like the boxes society likes people to fit into. I could like whoever was attractive. Guys, girls, trans, and anyone else who happened to catch my eye.

 

Same with sex itself – it something was fun, there was no reason to feel a taboo over it once I got used to it (though that’s all the details I’m giving about that!). I guess, I just don’t understand society very well, and that gives me freedom because I realized my hang-ups didn’t make any logical sense. While being autistic makes it difficult for me to find someone to have sex with, I think it ultimately gives me more enjoyment and freedom with the sex I do have.

 

If you like what you’ve read, 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.

Autism Parent or Autism Adjacent?

I recently was thinking about a problem I’ve seen popping up in my feed lately, voiced by autistic parents. Not autism parents, autistic parents. As in, parents who are themselves autistic. They may or may not have children who are also autistic, but it is usually assumed when they say they are autistic parents that they are neurotypical parents of autistic children. This is because the label of ‘autism parent’ has been used for a long time to describe parents of autistic children.

Off the top of my head and with my 6:00AM foggy brain, I don’t think any other group does this. My fiancé was adopted from Korea, and I don’t think his parents have ever referred to themselves as ‘Korean parents’. That would imply they are parents who are Korean, which they are not. My short-haired mom doesn’t refer to herself as a long-haired braided mom just because I have long hair in a braid. Gay parents aren’t parents of gay children, they are parents who are gay.

You might as well have a cis-gendered mother refer to herself as a male parent if she gives birth to a son, as if having a male child makes her a male parent.

mom and baby
Description: Stock photo of a woman with a baby, added text has her thinking, “Having a male baby makes me a male parent, even though I’m a cis-woman!

 

So why are the parents of autistic children called autism parents?

I’m not sure what co-opting this identity accomplishes. I think some parents just find out that their kid has something, find a community, and slip into the preset of that community in order to find support without thinking too deeply about the label. I’m not sure how it started though. I don’t even think other groups of disabled people have this problem.  When I google ‘disabled parents’, I don’t find pages about parents of disabled children – I find pages about parents who are themselves disabled. I can google ‘blind’, ‘deaf’, ‘mute’, ‘paralyzed’, and ‘multiple sclerosis’ parents and not find any immediate pages about parents of children with those various conditions. Even changing ‘disabled’ to ‘disability’ gets me the same results – talking about parents who are disabled. Yet, when I google ‘autism parents’, here is the result:

Autism Parents.PNG
Picture is a screen-shot of the google search results for ‘autism parent’ referring exclusively to parents of autistic children

Why does this continue? There are parents who are autistic trying to find resources and connect with each other, and instead they end up being swallowed or erased by websites geared towards neurotypical parents of autistic children. There are autistics like myself who want to become parents one day struggle to find resources geared towards us. Perhaps this has something to do with the mistaken assumption that autism magically disappears at the age of eighteen. I’m not sure what legally being allowed to vote for the first time has to do with my neurology, but apparently some people think it’s linked? (Sarcasm)

As I was pondering the problem of the autism parent label and how it erases and makes things difficult for autistic parents, I thought about how there really isn’t a ‘neat’ alternative term. ‘Parent of an autistic’ feels bulky to say the same way ‘person with autism’ feels bulky – though you can see my previous post about the subject of language as to why there are other problems with that term. As I was thinking, the phrase ‘autism adjacent’ popped into my mind. And thanks to a quiet love of alliteration, it got its hooks in me.

Autism Adjacent literally means you are next to autism. You yourself do not have it, but someone you care for or love does. It sounds better thanks to alliteration, it says what it means, it doesn’t erase autistic parents, and it doesn’t have the same initials as ‘Animal Planet’ or ‘Alien v Predator’. I think that’s a win all around.

So, let’s see if this can be a thing. I know I’m a small blogger in a small corner of the internet, but I think ‘Autism Adjacent’ could be the much needed alternative to let autistic parents reclaim the space that should have been theirs all along. Maybe it’s too late for real change – I worry that ‘autism parent’ is too embedded into the culture of society to be easily removed, if simply because of habit. But I think it can happen.

Agree, disagree? Leave your thoughts in the comments section.

If you like what you’ve read, 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.