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.

 

Skiing
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.

If you liked this post, show your support by following me here, on facebook (Some Girl with a Braid), or on twitter (@AmalenaCaldwell). Like, comment, and share!

mountains
View of the mountains from the resort

 

 

 

 

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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.

 

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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:

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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.

Looking for Beta Readers!

Hello lovely readers!

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

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

 

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

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

 

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

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

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

A Letter to Autism Parents from an Autistic Adult

Dear Autism Parents,

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

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

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

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

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

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

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Can you spot the difference?

 

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

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

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

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

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

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

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

Thank you for your time.

Sincerely,

An Autistic Adult

 

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

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

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

 

Autistic at Disney World

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

kida pin

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

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

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

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

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

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

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

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

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

 

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

Which theme park is your favorite?

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

 

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