How To Share A Space With Your Partner (when you both have accessibility needs)

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As we continue in the Series That Never Ends (parts 1, 2, and 3), I like to dream that this will be the final installment. But I thought that last week, and here we are. Who knows what exciting new topics will be birthed within this blog post?

In the meantime, there’s a subgenre of competing access needs that I have never seen addressed, but that seems VERY important to discuss, and I have many Thoughts about it. That subgenre is when you are married to or living with someone whose access needs in some ways compete with your own.

But Olivia, you might say, how often does that happen? Well surprisingly often. I personally know…well almost every couple I know has at least a few accommodations they’re working with and that means two people have to find out how to accommodate each other basically 24/7. I know one couple in which one has severe anxiety and the other has severe misophonia making requests for noise accommodations a challenge, one couple in which one person has PTSD that is triggered by criticism, and another who has anxiety triggered by mess, meaning conversations about who has to take care of the house or whether things are being kept up can turn into meltdowns.

What do you do? How do you provide for different needs and make space for different ways of reacting to emotions?

I do not have the answers. I have some suggestions.

Get Yourself a Safe Space

More than anything else in the world, and perhaps this is simply because I am anxious introvert, I must recommend that every person has at least one room that is exclusively theirs or that feels 100% safe. It’s hard to articulate the way that having place to go where you don’t feel environmental stress or discomfort can bring your base level of functioning up. It allows a small amount of respite. When you’re living with someone who has differing needs from your own and the rest of the house may be a space of negotiation and compromise, having one area that is 100% you can make the difference between “home is exhausting” and “I have a place to recharge.”

That place to recharge allows you to disengage if a solution isn’t happening immediately, or if the shared spaces simply become too much for you. It helps to limit the amount of resentment you might feel when your needs don’t get met, helps keep you from hitting a meltdown point, and that space to breathe allows you to brainstorm solutions when your emotions are lowered.

So #1 piece is to make sure that you have one place where your needs are met, that belongs to you. But the rest of your house still exists, and you might want to eat meals with your housemate or occasionally interact with them. What do you do?

Talking About It

Because accommodations can be a fraught topic, I personally recommend setting aside a specific time to discuss them when no one’s emotions are high, but additionally setting up ongoing check ins so that it’s normal to discuss accommodations, and you don’t get that Serious Conversation vibe that can freak anyone out. Check in with your partner and see if the accommodations you’ve put in place are working for them. Let them know if they forget about yours. Make it normal, make it easy, and make it common to talk about whatever you need to be comfortable in your home.

When, Where, and How to Accommodate

Next, I think it’s not only important to discuss the types of behaviors that are difficult for each other (e.g. your constant need for reassurance sets off my anxiety) but also to discuss different spaces in the house, and how each one can be used most effectively. This might mean each of you makes a list of what you’d ideally like, and then you decide what’s easy (you institute it immediately), what you can do sometimes (maybe you have a specific room for it) and what will be challenging (we’ll get to this soon). In my home, the computer room is our quiet space. We talk there sometimes, but if one of us is on our computer with headphones on, it’s not time to bring up anything serious.

Do you want to set aside certain safe spaces? Do you want to say that “in space x I ask that you don’t eat, or don’t use this fidget”? It can help to give certain behaviors an expected time and place rather than out of the blue. This also gives someone who might need to fidget, bring up their anxieties, use an accommodation device, or accommodate their own needs in some other way a place they can go to do it. There also might be certain spaces that are particularly challenging to one of you. For a long time our computer room was set up such that I was facing away from the door, and my husband could come up and touch me on the shoulder without me noticing him at all. This was Not Pleasant so we rearranged.

 

When you hit the hard lines (e.g. one person can’t control their facial muscles and the other has misophonia) you may have to set specific rooms where things can or cannot happen, or decide that one person’s particular set of needs has to trump. It’s important to discuss these and have a way to bring it up.

Integrating Accommodations Into Your Life

Finally, it’s good to create a language for moving forward. Circumstances will change over time. Maybe you were fine with saying your partner gets to eat in the computer room with you, but you’re having a shit day and you need more space. You need to have a way to communicate that, and an understanding that the “rules” will change in the moment. It’s also good to have a way to remind your partner if they’re doing something they’d said they won’t (e.g. my partner knows I prefer there be music or noise on if he’s eating next to me). It can feel like nagging, but sometimes it does take time to develop the habit. If your partner feels like it you might brainstorm ways to build the habit together, e.g. a small visual reminder like a post it.

Essentially, there are a few ways you can manage competing access needs in a home: you can say that certain people get their accommodations at a specific time or place. You can say that one person’s need trumps another. Or you can try to find ways to make the needs mesh. A mix of both will probably be the best for everyone, but you have to talk about it to find what works for you.

 

Competing Access Needs

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My last couple posts have been about misophonia, and I’m sure you all are starting to get bored but I have one more post in me related to the topic so too bad for you. BUT I am not going to be focusing exclusively on misophonia here. Instead, I’m going to use a common occurrence for folks with misophonia to talk about a larger issue: competing access needs.

What Are Competing Access Needs?

Scene: you have misophonia. You’re chilling with one of your friends, who you happen to know is autistic, and they pull out a fidget cube. They’re going to town on it, clearly having some happy stimmy time, and it’s making this noise. This awful clicking noise. This triggering, infuriating, misophonia causing noise.

What do you do?

This is an example of competing access needs. One person needs the fidget to accommodate their needs, the other person needs the fidget to stop in order to accommodate their needs. How do both people access the space? How do they spend time together without being total assholes and making the other one miserable?

Well there’s a possibility that they can’t. It’s a lovely idea that every space should be accessible to every person. But in reality even that ideal can exclude some people. As an example, let’s say there’s a gay couple who in order to feel safe would like to be able to hold hands, or openly acknowledge each other as partners. On the other hand, perhaps there’s someone who is deeply offended by gay romance and finds a space unacceptable if there are openly gay people there. These two people cannot be welcomed into the same space without one of them feeling unsafe or unwelcome.

Most often competing access needs gets brought up in regards to safe spaces, and the kinds of beliefs and discussions that people want out of particular groups or organizations. But when we’re talking disability, I think things get a lot more practical and a lot more in your face. Let’s say I’m an autistic who has a deep desire for visual stimulation and you’re an autistic who has seizures when you’re visually overstimulated. Can we safely exist in the same space?

I’ve experienced this a LOT recently as someone with misophonia in a room with many people who are physically disabled, and who don’t have the greatest control over their facial muscles. Often this results in some very intense mouth noises, especially when food is involved.

Solutions

Ok, so this is a problem in a lot of places. But what do we actually DO about it? Is it a problem we can solve? Is it a problem we want to solve?

From what I can see there are two main approaches to dealing with diverse needs. One is to try to make every space universally inclusive. The other is to create many specialized spaces that cater to particular needs. In my mind, neither of these is a perfect solution, but if we are going to meet the most needs of the most people, we should be aiming to do some of each.

Universal Design

There are certain spaces that require as universal a design as possible. This includes public spaces like schools, libraries, government buildings, etc. I think we should be explicit about this, and that the people designing and organizing in those spaces should talk to community members to determine the biggest things they can do for accessibility (including but not limited to ramps/elevators for mobility accessibility, non flourescent lights, noise dampening materials to deter echo, using microphones, translators, and closed captioning, etc.)

Safe Spaces

In contrast, there are other spaces that are set up to cater to certain people and certain people’s needs. A GLBT group is there to cater to the needs of GLBT individuals. These spaces are typically explicit, but the problem comes when people within that group have different needs and folks are not explicit about which need they will cater to. One example of this came from Unit of Caring, who was one of the first to talk about competing access needs. They say that as a gay person it was very helpful and important to them to actively engage with the idea that being gay is inherently negative to humanity. There was a part of their brain that believed this, and they needed to parse through the arguments to come out feeling validated.

In contrast, most gay people I know find the very suggest offensive. There’s nothing inherently wrong about these different needs, but what is wrong is throwing all these people together under the guise of “queer support” and getting mad when someone gets hurt. It seems reasonable to me to have a process if someone wants to have a conversation that may distress others in a group setting, so that those who want to participate can and those who don’t can find support in their own fashion. To me, that would mean being explicit in the guidelines and introductions of any given group that people may have different needs, asking people to think before bringing up potentially painful and damaging topics, and having a way for someone to suggest a smaller group to deal with things like that.

Guidelines

There will of course be times, both in smaller groups and in more universal settings, where one need must be prioritized over another. In an ideal universe this would never have to happen, but in real life, it seems to me that there are some guidelines we can follow to decide whose need gets our immediate priority until we can accommodate everyone.

First, I would prioritize health concerns the highest. Your need for a strobe light stim does not trump my strobe induced epilepsy. If one person’s need to stim or access or talk will physically injure another person, the injury takes precedence. An interesting example of this to me has to do with the intersection of eating disorders and animal rights. I have had vegans come at me about eating meat, but cutting meat out of my diet is a recipe for me to fall into my eating disordered patterns and seriously injure if not kill myself. My need to remain healthy is more important than the discomfort that animal rights activists feel about meat.

Second, I would look at immediacy. Does the need or desire have to be fulfilled right now, or can a person manage for a little bit? For example if I am on the verge of a major meltdown and need a stim toy, but the sound of my fidget sets off your misophonia, I would prioritize the person about to meltdown in that moment.

Third, I’d look at the importance of the need: does it make you feel more comfortable, or will you simply be unable to access the space without it? I could access most spaces without accommodations it would just be really unpleasant and drain me quite quickly. Someone else who needs a ramp or ASL interpretation to be able to use the space at all would take priority in my mind.

And finally we’d also have to look at cost. Some things simply can’t be done without resources, and if those resources aren’t available it can be difficult if not impossible to make a space accessible.

So if you’re a group or a convention or a public space that’s looking to find ways to be careful about allocating your resources for accessibility, that’s what I’d look at if you can’t be accessible to everyone. I think it’s also important to be explicit. If you need to use a microphone and loudspeakers to make an event accessible to hard of hearing people, then also say or write that you recognize it can be a sensory difficulty for some people and offer a quiet space in addition. Having a policy that is written and available that allows people to make requests about accessibility, and lays out what you’ve chosen to prioritize and why goes a long way towards starting the dialogue and for more formal spaces that seems like the best way forward to me.

Private Spaces

But all of this started because of a question that had nothing to do with conferences or support groups. It had to do with someone who has misophonia and wants to be able to hang out with their friends who fidget. Who gets to say “please stop” or “no I really need this”?

Again I think talking is the first step here. Sometimes there’s an easy solution, like a different fidget that doesn’t make noise, and all you need to do is mention it. I’d recommend checking out part two of this series for how to bring up your misophonia, but if you feel comfortable with the person who’s competing for access with you, this is a great time to start a conversation. Everyone has the right to express their needs and wants in this situation, but I encourage people to weigh how their own accommodations affect others.

I think the same ideas that can guide larger spaces can hold to some extent here. But I also think the discussions don’t need to be as explicit. You can talk to your friends and navigate each individual situation based on who has more spoons at any given point, whether one person feels like they can handle things without accommodations, or whether someone really does need some help.

I’m not going to get into tons of specifics here because there are so many permutations of types of accommodations, but if you have specific troubleshooting you’d like to brainstorm, drop it in the comments.

This post is already getting too long, but I am going to make it into a two parter because I’d like to get into one very specific area of accommodations and competing access needs and that is living space. What if two people live together and both have accessibility needs? How do you manage? We’ll get into that next week along with some other exciting topics.

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Misophonia, Now With Sharing!

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Last week we spent some time talking about what misophonia was and some ways for managing it. Unfortunately we’re still low on research, so it was a lot of preliminary and experimental ideas.

But misophonia is not something that happens in isolation. More often than not, misophonia triggers are sounds that other people make: breathing, sneezing, eating, drinking. What’s a person to do when they have to manage social rules in addition to the intense emotions and anxiety of misophonia? Today’s post will focus on how to talk to other people, ask for help, and let others know that they might be triggering your misophonia.

I am a shameless thief. If there are a bunch of techniques for coping that fall under the header of a diagnosis I don’t have, I give 0 fucks and steal the hell out of them. In this case, because misophonia is such a new term and diagnosis, I’m going to be borrowing a lot from advice about anxiety and managing anxiety triggers with other people.

Note: If you are concerned that someone in your life might respond poorly to a disclosure, use your own judgment. Some people are truly assholes, and if they learn that something upsets you they will intentionally do it. Protect yourself! But if you trust someone, honestly and openness are typically my favorite ways forward.

So how the &@#$@#$& do I tell my friends/spouse/coworkers that they set off my misophonia?

One of the particular difficulties of misophonia is that it’s often anxiety centered on other people, which means that you have to manage social rules while in a heightened state. Ew. It also means navigating the challenging place of having to tell someone, likely someone close to you, that something they do not only irritates you, but makes you so angry you want to die.

No matter what, it’s possible that talking about your misophonia with someone will end poorly. They may think you’re overreacting, they may feel offended that they’re a trigger, or they simply might forget to stop doing the trigger. But there are some things you can do to make the conversation more likely to end well.

First, if you are in the midst of an episode, it’s not the best time to have an extended conversation about misophonia and coping skills. Try to remove yourself from the situation, or ask for a quick accommodation (hey could you turn on some music/stop rubbing your socks together/etc) so that you can calm down before you get into the weeds about what you really need, what triggers you, and what misophonia is.

Second, when you do want to talk to someone about a behavior they do that triggers your misophonia, prepare ahead of time. Start by knowing the background of misophonia and the science that shows it’s real. If you come to someone from the perspective that you have a problem and you’re asking them for help, they’re far more likely to make adjustments. Having a “diagnosis” can make it more legitimate and easier for people to understand. It’s nice to start by laying out the situation, for example:
1. I have misophonia. Misophonia is ___
2. Behavior x sets off my misophonia, and when I hear that noise I feel ___

That way you can lead into how they can help by asking them to adjust the behavior.
3. Could you not do behavior x, or only do behavior x in a different room, or have other noise on when you do behavior x?

You may even want to practice this ahead of time depending upon the person and the situation. It’s best if you can come in with a particular accommodation that you would like them to do, but sometimes you don’t have an idea and that’s ok. You may also have to spend some time explaining misophonia, have some links on hand with research, or give a person time to get used to the idea. I try to focus less on what they’re doing, and more on the fact that my brain processes something differently and I need help to manage it. People love to help. People hate to change.

What Are Some Examples of Accommodations?

I know a number of people who have talked to a partner or family member, and everyone is in to the idea of accommodating the misophonia, but that’s where they get stuck.

Many people will be willing to stop a behavior once they realize it’s frustrating or upsetting to you, but in some cases they may forget, or it may be a behavior they simply can’t stop (like eating) or something they do mindlessly (picking at fingernails). Those might require some work together to figure out the best way to move forward. I have found that the best way to make this effective is to approach it as “we are problem solving together” rather than “you need to fix something that annoys me about you.”

Some examples of accommodations include:
-having a “safe word” so they know if they’re triggering you
-can you start habitually having extra noise during meal times, e.g. TV or music?
-If they forget often, can you add a visual somewhere in their space like a post it note that will remind them?
-is there a specific place that they can eat/clip their nails/etc. to give you some space?
-is it easier for you if there is advance warning? Can your partner/friend alert you in advance when they’re about to do one of your triggers?

It’s important to remember that you’re likely working to change someone’s habits, and that’s challenging. It can easily devolve into nagging. It’s probably a good idea to discuss how the other person prefers you to bring it up if they forget or make a mistake. Maybe you institute check ins so that you can let them know if there have been problems or if there’s anything new you want to discuss. It might seem difficult, touchy, or potentially fight-inducing, but COMMUNICATION is so important.

“Anxious thoughts are supremely personal, but let your partner in on them. It’s an important part of intimacy. You will often be thinking about what you need to do to feel safe, what feels bad for you and what could go wrong. You will also have an enormous capacity to think of other people – anxious people do – but make sure that you let you partner in on the thoughts that arrest you. Keeping things too much to yourself has a way of widening the distance between two people.” From Hey Sigmund.

I think the same thing goes for misophonia. Letting them know “hey, I”m getting anxious and upset” can be enough to start a conversation that heads off a nasty interaction or building resentment.

Speaking of which, the WORST way forward is to do nothing, to communicate once and then hope for the best, or to otherwise foster resentment. It’s SO easy to feel resentful when someone unknowingly and blithely goes about their life making you miserable, but we have to remember that they simply don’t know and don’t experience it the way we do. We have to train our friends/partners/families to understand what our experience is like and to be empathetic to that response. How do we do that? Boundaries!

How Do You Set and Reinforce Boundaries?

First and foremost, the thing that I want to reiterate about boundaries (and this is advice for myself as well as others) is that setting a boundary is not a one time experience. You don’t tell someone your boundary and then it’s done and everything is good. It’s a process over time.

I like to state boundaries in terms of my needs rather than someone else’s behaviors. “I feel shitty when I hear this noise.” That’s a fact and no one can debate that fact. It also doesn’t put the other person on the defensive immediately. You can follow the script I laid out above. But there’s one final step to setting a boundary, and that’s introducing a consequence. It might mean that you will leave the room whenever they do the behavior, you may stop talking to them, or you may leave the house. It depends on what makes the most sense.

Over time, if the other person continues to do the behavior that you asked them not to do, you may have to remind them. “Hey, I asked you not to chew with your mouth open. Could you stop please? If you don’t, I’m going to go upstairs.” If they continue to ignore the boundary, enact the consequence. Captain Awkward has some great resources about setting boundaries, although they are not misophonia specific. BUT they can be applied, because in many ways navigating misophonia together is like navigating any other anxiety inducing trigger.

So What Are The Steps Again?

Ok, I talked a lot so here’s a tl;dr.

  1. If you feel comfortable disclosing, the first step is to tell the person who triggers you what misophonia is and what they’re doing that sets you off.
  2. The second step is to work together to create a plan of accommodations. This might be the other person ceasing the behavior, or adding in other noises to offset.
  3. Reinforce the boundary! The other person may forget, decide it’s not worth it, or just get careless. If that happens, it’s useful to remind them, and regularly revisit the plan to see if it’s working for everyone.

There you go, solved all your misophonia problems. JK, we have more to talk about. My next post will cover competing access needs, which is a much larger topic than misophonia, but we’re going to dive in through the lens of misophonia. Woohoo!

 

Miso-Motherfucking-Phonia

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My dear friend Jodi asked me to do a post about misophonia, which resulted in a LOT of words. Thus, this is the first in a series of (most likely) 2 posts about misophonia.

Hello. My name is Olivia, and when I hear chewing, smacking, slurping noises, I have to restrain myself from doing physical violence to whoever is creating those noises.

No, I’m not just too sensitive. I’m not making a big deal out of nothing. I shouldn’t just get over it. The sound of chewing is honestly painful for me, and despite all my reassurances to myself, my attempts to drown it out with other noises, my deep knowledge that no one is trying to attack me with their chewing, the rage builds the moment I hear mouth noises. I can’t seem to change that.

I have misophonia.

What the fuck is misophonia?

Cool story Olivia, but why are you talking about your weird internal problems? Well because it turns out that a surprising number of people have similar problems, especially folks with sensory sensitivities or (anecdotally) other neurodivergences. It appears to be more common in women and typically develops around age 12, but that’s most of what we know demographically.

And it also turns out that a lot of neurotypical folks have no idea what I’m talking about when I bring it up, so we’re going to do a twofold job here today: a little bit of education about misophonia, and a little bit of problem solving for those who deal with it.

So let’s start with what misophonia is, and some of the science about why it happens.

Some research

According to Harvard Health “People with misophonia are affected emotionally by common sounds — usually those made by others, and usually ones that other people don’t pay attention to. The examples above (breathing, yawning, or chewing) create a fight-or-flight response that triggers anger and a desire to escape. This disorder is little studied and we don’t know how common it is. It affects some worse than others and can lead to isolation, as people suffering from this condition try to avoid these trigger sounds.”

Now when I say emotionally affected I don’t mean annoyed or upset. I mean full on rage, a desire to harm another person, a panic attack, a meltdown, MAJOR emotional response. Some people even feel homicidal or suicidal urges, although that’s on the extreme end of the spectrum.

So what the heck causes some people to have these odd reactions? We don’t have a ton of good research yet, as the disorder is only recently named and studied. We do have preliminary evidence that those with misophonia have different neural responses to trigger noises than those without it, and that trigger noises lead to body responses like increased heart rate or sweat.

That means there is at least some physiological element to the problem, or at the very least that we’re not just making it up or making a big deal for no reason. Our brains respond differently.

There are some other theories out there: The Jastebroffs suggest that “sounds (processed in the “auditory part of the brain”) were associated during a negative experience with a person, place or experience within the limbic system (the “emotional part of the brain) and then stored in memory (via the “thinking part of the brain”).

Once this negative association is formed, every time the same sound is encountered, a person with misophonia will experience what’s known as autonomic arousal.” (Source). Some people have suggested it’s a form of synaesthesia, related to OCD or anxiety disorders, or has its basis in another mental illness. As research progresses, we should learn more about the sources of misophonia, and hopefully more about appropriate ways to treat it.

Please make it stop

Speaking of appropriate ways to treat it, what are you supposed to do if you have misophonia and spend your life filled with indescribable rage at basic human behaviors? Unsurprisingly, we also don’t have a ton by way of treatments, and the ones we do have really don’t have much research or evidence behind them. Primarily it has been communities of individuals with misophonia sharing techniques that work for them.

The first and most obvious solution is to try to get rid of or avoid the noise. Some folks have used different earplugs, whether that’s the simple cheap orange foam ones, or something like Vibes, which were designed to reduce some noise while maintaining clarity in music. Noise cancelling headphones are another option, and some people even use hearing aids to adjust the sound they’re hearing.

I personally prefer to drown out the noise. If there is music playing, a TV on, or if I am eating at the same time as someone else, my misophonia typically is not triggered. Some folks prefer white noise machines, or other versions of noise to mask the trigger sound. Your mileage may vary on this one though, as some people need very loud noises to drown out the misophonia. Most drastically, you can simply leave the room where the trigger is happening. This can be really challenging for people who are triggered by mouth noises, as it means mealtimes simply cannot be social. That’s one of the many reasons that sufferers would strongly prefer more research that could indicate ways to desensitize or change the reaction.

Another option that I found in my research is mimicry. According to some research and anecdotal evidence, mimicking the noise that triggers misophonia can alleviate some of the anxiety. In my personal experience, this has absolutely been true of chewing noises. If I am also chewing, it seems to cancel out the other person’s noise. Again, your mileage may vary.

There are limited case studies that show some efficacy in symptom reduction from Cognitive Behavior Therapy and Exposure Therapy. Note that this DOES NOT mean simply exposing yourself to the sounds and hoping you get used to it. You should be asking a therapist to conduct the exposure therapy with you, beginning with a low level of intensity, and ideally sandwiching the trigger noise between pleasant sounds.

A subset of the exposure therapy vein is called Trigger Tamer, and it’s an app that exposes you to a few seconds of a trigger sound, then asks you to identify your physical reaction and change that physical reaction (e.g. if your shoulders tense up, find a way to relax those muscles immediately upon hearing the trigger). This is still an experimental technique, but the app is only $40 so in terms of investment it’s not too bad.

Some people say hypnosis has worked for them. I can neither confirm nor deny if it works.

Another thing to investigate is Sensory Processing Disorder, a disorder related to autism. It’s when your brain cannot process the input of your senses and either over or understimulates you. There are far more resources out there about SPD than there are about misophonia, and one of the best places to start is a sensory diet. It might seem counterintuitive to fight overstimulation with more stimulation, but I have found that deep pressure like a weighted blanket, an intense hug, or a cat on your lap can go a long way towards calming my other senses. It’s also good to remember that if you are experiencing a misophonia trigger, there may also be additional sensory overload happening that you aren’t noticing. If the lights are too bright, the smells too intense, the room too crowded, your response to trigger sounds will be stronger. If possible, limit the amount of sensory input that’s coming in if you absolutely need to tolerate your trigger sounds.

The last overall technique that people use is not focusing on the sound as a trigger but rather learning how to manage the panic or anxiety that comes with it. That might include CBT, DBT, deep breathing, mindfulness, or any of dozens of other techniques that people use to manage anxiety. One element that many people with misophonia might forget about is that you are more susceptible to triggers when your overall stress levels are higher. That means if you’re eating, sleeping, exercising, taking your meds, and doing all your other coping techniques that keep your general anxiety low, misophonia will likely not be as intense.

So now that we’ve covered the basics, I’m going to cut off part 1 of this series here. Next week I’ll be covering the social elements of misophonia: how do you manage relationships when misophonia gets in the way, how do you communicate your needs to others, and how do you deal with competing access needs (someone’s fidget sets off your misophonia). See ya then!

 

Your Presumption Is Obnoxious

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CW: self harm, eating disorders

Earlier this week I posted an article detailing some clashes between autistic self advocates and parent advocates about whether it was appropriate for self advocates to represent the autism community as a whole, especially because (in the perception of parents) if a person is capable of engaging in self advocacy, of being part of a committee, of speaking for themself, and of intellectually understanding and pushing for civil rights, they are not even on the same spectrum as a child who will never live independently and has severe needs.

I am not the first person to explain why this is so very very wrong. You say that we are not like your child, but when we tell you the ways that we are, you discount our abilities. You say that we are not like your child, but when we show you that functioning depends on context, you demand conformity to neurotypical behaviors.

But I think that I am a particularly good example of why “you’re not like my child” is such BS, because no one has ever accused me of being high needs or dependent or any of those other awful words. I present as highly competent and highly functional, and I flew under the autism radar for a very long time. In fact I flew so under the radar that no therapist ever even brought up the diagnosis to me. I brought it up to them.

I was successful in school, I have always lived independently, I have always had a job, I have always had friends, and I have always had romantic relationships.

I appear incredibly high functioning because I am productive. I hold down a full time job and I freelance. I write a blog. I record and edit a podcast. I build websites. I volunteer. I am a public speaker. I do crafts and art projects. I create a great deal of output that people can point to and say “look how productive and functional she is.”

But autism nearly killed me.

How could something that doesn’t keep me from earning money or getting a degree or having relationships cause so much damage?

Before I was diagnosed, my mind was a hellish place to be. I don’t remember much clearly from the five years between the ages of 18 and 23. I do remember how nearly every moment of my life felt painful. Every moment I was a second away from feeling vehement hatred for myself, an overwhelming emotion that left me almost blinded, and desperate to rip out of my skin, destroy my body, or disappear entirely.

Being on the brink of suicidal for five years is exhausting. Externally it might have appeared that I had a reasonable quality of life, but internally I cannot express how deeply awful it felt, constantly. I spent years of my life counting down the hours until I could cut myself again, doing it daily if not multiple times in a day.

If it hadn’t been for the aggressive support system of my family, I would have killed myself.

Why? Because I was constantly feeling as if I couldn’t navigate my social systems. I felt lonely and empty and pointless because of perseveration and missing social cues. I was on sensory overload far more of the time than I realized. I didn’t get that I could stop and try to fix these feelings. They were just what living felt like to me. It was like my life was one neverending meltdown, but I had to get up in the morning and keep going because there were no other options.

And this whole time I was going to college. I graduated in three years, double major. I was published. I held a job. I had boyfriends. I had friends. I went to extracurriculars. Many people point out the fact that functioning is uneven, that you may see when someone is at their most functional but miss that at a different time, with different supports, they are not as capable. Someone could look highly functional in one setting, but require significant supports in a different setting.

But functioning labels miss even more than that. They completely overlook quality of life. They forget to think about what accomplishing a given task takes out of a person. Sure, I was functional, but every day for years I was on the brink of suicide (which I would argue is the least functional thing you can be).

I tapped out every resource that I had to keep going through those years, and every day felt like I was expending energy equivalent to climbing a mountain. Giving me the supports that a “lower functioning” person more visibly needs has improved my quality of life by leaps and bounds. Saying that they are “higher need” than I am misses that the impact of supports in my life has literally been night and day, the difference between spending every day wanting to die, and finding myself actually feeling joy on most days.

It’s the difference between being incapable of feeding myself, and refusing food for five years, and today, where I eat a reasonably healthy diet, intake food regularly, and even cook at times.

So yeah, I COULD survive, for a while, as a “functional” human adult without supports. But why should I? Why should I have to suffer because I’m really good at doing things that feel awful?

The presumption that I don’t understand what it’s like to be seriously disabled, that my condition is less serious, that I do not need supports…these are the things that lead people like me to go undiagnosed, to spend years of our lives in deep, dark depression, and sometimes even lose those fights. Functioning labels fucking kill, and that’s not a god damn exaggeration. Your assumption that I am not like your child dismisses all of my struggles. It disrespects not only me, but all the invisibly disabled people out there.

I am like your child. I struggle. I require supports. I require understanding. You do not know my life.

I Thought It Would Be Empowering, But I’m Just Embarrassed

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A couple of months ago I decided to do a photoshoot for Hella Positive Pinup. This meant taking some of my clothes off in front of a camera, posing in ways that were supposed to capture what I felt was sexy, and generally help expand the concept of what “beautiful” is.

I’ve never been a big fan of gettin’ naked, but I saw a photo that inspired me to do it. It was a beautiful photo of a woman with major scarring. It made me cry. I’ve never seen scars look beautiful before, not like that, and I’ve never seen a body whose skin is like mine be held up and photographed. I wanted to do that for people whose bodies are like mine.

It was supposed to be empowering. It was supposed to be the next step in my recovery, where I can look at photos of my stripped bare body and feel comfortable. I knew I was pushing my boundaries by doing it, but my brain told me that I should go for it, I’d feel better after I did it.

That people would tell me how beautiful I looked.

Looking back it’s easy to see that what I wanted was the external validation. That image that I saw that inspired me? There were comments all over it saying how gorgeous it was, how important it was, how it changed their perspective. I wanted someone else to do that for me, to remind me that my body isn’t a weird outlier, but that other people have similar experiences, that someone else can see me as attractive.

I’ve come to hate the images.

To be clear, the process was wonderful, and I still fully believe in the project. I just hate mine.

My body droops oddly, and doesn’t have the artistic quality that other images do. And it’s not just me. When I’ve mentioned it to others, they’ve said “well you were posed in an unflattering way. You weren’t going for sexy.”

But I was. And I don’t know how to make my body look and act the way that I want it to. And I feel humiliated. And after getting no validation from others, it confirms to me that my body is not what it’s supposed to be. I know I shouldn’t need that validation but hey, it turns out I’m flawed and I needed some reassurance as I move forward in recovery.

I’m not certain if all of the feelings that I’m having welling up around this shoot are important feelings to be in touch with, if I’ve been hiding from my feelngs about my body for too long. I know that I have been hiding from my body dysmorphia, just not looking at myself, avoiding mirrors, avoiding numbers, avoiding all of it. I don’t know if that’s a reasonable way to live. But after trying to be more open and get some support, I feel more alone and more like I want to pretend my body doesn’t exist.

I wanted to have a conversation with people about my body, and no one seemed interested. I was hoping that i could connect with other people who feel the same way that I do, and there was no one. It left me feeling more alone. People say that if there’s art you want to see you should create it, and so I took that step, but it seems like no one else wanted to see that.

I don’t know how to move forward with my body and making peace with my body at this point. I know that we often get stories of people who do shoots like this and find that it made them feel better and more empowered, encouragement to embrace your body and show it off, push your boundaries, step out of your comfort zone because you’ll learn something about yourself.

We don’t often hear stories of when body positivity fails. No one said anything cruel about my body, no one attacked me, but I pushed myself and came out feeling worse. Sometimes that happens. I wish I had a template for moving forward, for recognizing that I’m still at a place where I need people to react positively to my body or I’ll want to hide it away. I suppose that if nothing else, I’ve learned from this experience that I am not as far in recovery as I thought I was, or that perhaps I will always need external reminders about my body.

I don’t know if that’s ok or not, and I don’t know how to manage this failed experiment.

My Gender

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I don’t know what gender is anymore.

I say this not to invalidate people who feel gender deeply. I believe you when you say “I know I am a woman” or “It hurts me when you use female pronouns for me.” But I don’t understand, and I so deeply want to. I want to know why we care, why we are so obsessed with words that point to arbitrarily assigned characteristics.

I know a lot of things that gender isn’t. Gender isn’t our body parts. It isn’t our behavior. It isn’t our appearance, whether how our bodies look or what we choose to wear. Gender is not what you think or what you believe. Gender is not prescriptive, a set of rules that you HAVE to follow or a role you have to take. Gender is not binary, gender is not set, gender changes and grows all the time. But if it isn’t bodies or thoughts or appearances or behaviors or beliefs or rules or even feelings, then what the hell is it?

I don’t know what gender IS.

How can I know what my gender is, if I don’t know what gender is?

On Coming Out Day this year, I said that I was “less cis than originally advertised.” I don’t know what that means. Perhaps gender is the collection of attributes that are most important to you; your defining characteristics. Your core identity. Why have a word for it, if not your name? Gender Olivia?

Here is what I do know.

I am glitter and baggy sweatshirts, dresses with no structure because tight on my waist is sensory hell. I am COLOR.

I am buzzed hair and peacock hair, elaborate coifs and not washing for days because depression.

I am keeping up with the boys because fuck sexism, and the constant recognition that your testosterone makes you stronger than I am.

I am tattoos growing all over my skin, up and down my body, tying me in, keeping me here, protecting me from razor blades that would sap out the ink.

I am an Octopus Queen.

I am rhythm, constant, music in my head, the tip tap of fingers on a keyboard, the way the world sings, the buzz of electronics, the endless sounds sounds sounds.

I am deep pressure and crazy cat lady and cat eye glasses.

I am NO FUCK OFF.

I am autism.

I am depression.

I am starvation.

I am that tickle of desire that won’t leave that tells me testosterone would be an option because it would help me gain muscle and remove this endless fat.

 

My gender is that I hate this post and I don’t know the answer anymore. It’s shit and my gender is not a collection of behaviors and appearances and desires and needs, because isn’t that just me and what’s the point of having a word for it anyway?

My gender is 404 not found.

My gender is

My gender is that I am a writer and I don’t have the words. Help me.