My Experience with Braces and Retainers

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

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

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Image is of me at age sixteen with braces.

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

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

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

 

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

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

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

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

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

 

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Why I Don’t “Light Up Blue”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.