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.

Thalassphobia
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.

bowl of roaches
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.

gobi manchurian.jpg
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.

seafood.jpg
Image is of a variety of seafood

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

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

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

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

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

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

DISABILITY IS NOT AN EXCUSE FOR ABUSE.

 

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Autistic Moments - Crawfish Dish.png

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.

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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!

 

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