Sensory Processing: When You Need To Go Up

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So I have a new therapist and I love her. Which means that there are about to be a lot of posts about personal insights coming your direction, because it’s been literally years since I’ve had a therapist who is pushy enough to get me to talk and insightful enough to make suggestions I haven’t heard before. And let me tell you she dropped some insight on me yesterday and it’s only our third session and I was not ready for her to pick up on my needs so dang quickly. This is your regular reminder to get you a therapist that feels right to you, because I have struggled through about five therapists who weren’t right and got nothing, and in 3 hours this lady has done more for me than any of them.

But today we’re not going to be talking about therapists and how awesome they can be. Today we’re going to talk about an element of sensory needs that is so rarely discussed that I work at the autism society and I flipping forgot about it: when you need more sensory energy instead of less. To clarify: I’m not talking about needing more sensory input vs. less sensory input. I’m talking about which direction the input takes your nervous system.

This can be a confusing distinction, so let’s take a couple of steps backward and see if we can work from there. When humans are faced with conflict, our nervous system activates: we hit fight or flight. But some of us have a freeze tendency. We leave our bodies, we dissociate, our energy and adrenaline seem to disappear. On an everyday basis it’s always useful to be balanced between that high energy reactivity which you may need because it activates you to go and do, vs. the calm that keeps you from getting overwhelmed and overstimulated.

We often think about sensory input as a way to bring people down: are you having a meltdown? You may need different sensory input. Are you running and screaming and have too much energy? Maybe you need some deep pressure. We think of the senses as a way to calm people down because it’s much easier to see if someone is dysregulated when they’re highly energized and all over the place.

But sensory input can go the other direction too. It can also bring someone’s energy levels up. The example that we were talking about was my average workday. Therapist asked what I do for self care at work (and I laughed), so we discussed where I tend to be on an anxiety level at work. I tend to be hugely disconnected from my body. I dissociate. I ignore my bodily needs. You know, the usual. What we realized was that I was getting really minimal sensory input of the type that makes my body feel good and capable: the proprioceptive, vestibular, spinny, pressure, bouncy goodness that keeps me awake and connected to my body.

It had literally never occurred to me before that I needed to be more activated at work, since we spend so much time thinking about reducing anxiety, staying calm, bringing our emotions down, etc. But here we were, talking about ways to hype me up. Get that nervous system flaring and energized. It was wild but made so much sense, as my responses always tend towards shutdown rather than meltdown, fatigue rather than insomnia, just falling asleep instead of facing my problems. When I do hit high anxiety or high activation, I know how to respond: I know the breathing techniques, I know the mindfulness, I know the sensory input that helps to calm me down.

What I DIDN’T know was what wakes me up and gets me excited. I didn’t even know that I needed to think about that. I think that this is one of the downfalls of focusing our discussions of autism and sensory processing disorder almost exclusively on children. Kids tend to have more energy than your average adult. It’s rare that I hear discussions of sensory supports that talks about people who fall asleep at the drop of a hat, or people who won’t get out of their chair or move. Those are the folks whose nervous systems are down down down. And I’ve noticed that the older people get, the more likely they are to deal with the fatigue, low energy, no activation style of sensory processing.

In order to deal with the fatigue and low energy, we’ve decided that I need to introduce sensory breaks into my day to get up and walk around, as well as start using a yoga ball for seating at least some of the time (so I can do a bit of the bouncy input).

I think it’s incredibly common that issues like sensory processing disorders get pigeonholed as one thing, and the people who fall on the reverse side get a bit boned. I’m always excited when a therapist points out the quieter side of a spectrum and reminds me to notice those needs.

It’s Not About the Fucking Straws Anymore

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I would put a “this is the last straw” pun here to start off the post with some levity, but honestly I’m too cranky so you get Serious Post from start to finish. You’ve probably heard that a number of cities are proposing banning plastic straws at a variety of levels, whether just in restaurants, or from being sold at all. What you may not have heard unless you’re active in the disability community is that many disabled folks are asking that this not be a straight out ban, as straws are accessibility devices for people with limited mobility or motor control. There are many people out there who cannot drink without a straw, and plastic straws are particularly well suited to the needs of disabled people as they hold up for a long time (many disabled people take longer to drink, and paper straws melt), they are the right size (larger metal straws can be a choking hazard), they are flexible, and they don’t require intensive washing like reusable straws (which many people with limited motor skills or mobility can’t do).

So that’s a lot that just happened in a paragraph. It’s not uncommon that when one group tries to do something good, someone else mentions that there’s an intersectional effect and we could approach it differently.

But holy moly have people been total assbutts about this. Over and over I see abled people saying “oh, this is easy, just use a biodegradable straw/metal straw/reusable straw” despite the fact that I have literally seen dozens of articles in the last two days without even looking about why those alternatives aren’t feasible.

What really chaps my ass about it though is that when presented with the facts, I have seen multiple people respond with “well it’s still just not worth the environment.” As if it’s fine to just ignore accessibility if you feel like it. As if disabled people can be disposed of if there’s something MORE important. As if the ONLY thing between us and complete global warming meltdown is the straws and so it is vitally important that disabled people give them up.

Don’t get me wrong, I’m all for decreasing our use of plastic straws for those of us who can. But at this point it’s so obvious that it’s not about the fucking straws anymore. It’s about the fact that able bodied people would rather focus on their own feel good emotions that they can “do something good” than listen to the basic accessibility needs of disabled people. I do mean very basic: we’re talking about the right to take a drink with some level of independence. We’re talking about the ability to go buy food in the community and exist publicly.

The more I push on it, the more it becomes clear to me that able bodied people are totally willing to just let disabled people live subpar lives, as if that’s the price we should have to pay for daring to be disabled, as if disabled people are the ones who have to make the necessary sacrifice to protect the plane. Someone’s gotta give things up, so why shouldn’t it be your right to have a drink with some level of independence?

But it’s super obvious that plastic straws ain’t gonna save the environment. There are thousands of other things that people could be advocating for if we can’t perfectly implement a straw ban, and in fact there are dozens of things that impact the environment much more significantly (plastic cups, driving, meat consumption just to name a few). So why is it that when disabled people say “hey, that’s an awesome thing for a lot of people to do but not one that we can do” it suddenly becomes the end all be all of environmentalism? Could it be…ableism?

To top it all off, the whole idea of the straw ban is shoving responsibility to individuals whose impact on the environment is significantly smaller than industry. While it’s great to take personal responsibility when we can, 71% of global emissions come from a mere 100 companies. Maybe those folks could be taking a little bit more responsibility. Maybe huge industries are in a better position to make a sacrifice than the disabled community. Maybe, just maybe, we’re way more willing to throw disabled people under the bus because as a whole, society thinks it’s ok for disabled people to live lives that aren’t independent, that don’t give them access to their communities, and that are merely surviving(I’ve seen this in a couple of places when people asked “how did disabled people survive before plastic straws then” and it chaps my ass because maybe we would like to do more than survive for once). This CANNOT ever be an acceptable solution to anything. Full stop.

I fully recognize that many people who are arguing for straw bans don’t consciously think “well fuck disabled people”. But there seems to be an underlying assumption that it’s ok for disabled people to live worse lives than everyone else that is built into many of the arguments I see, especially when I see language like “the needs of the many outweigh the needs of the few” or “the answer just isn’t more plastic”, as if either of those addresses the fact that disabled people NEED these straws for basic accessibility. Yes, there is a need for improving our relationship with the environment, but there are so many other ways we could work on it, why do we have to give up these very basic needs? Nothing should outweigh a person’s right to have a damn drink.

If your argument is “yeah, this is super inaccessible I guess, but too bad nothing we can do,” it’s a bad argument.

It isn’t about straws anymore. It’s about the fact that disabled folks are asked to carry this burden for society in a disproportionate way, and people are simply ok with that. Give us equal dignity and equal consideration please. It’s literally all we’re asking, and it’s definitely possible to advocate for environmentalism in ways that don’t hurt us.

A List of All the Things That Normal People Can Just Do But Are Now Behaviors Because I’m Autistic

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When I was younger, I was quirky. I didn’t have a diagnosis then, and nobody noticed the myriad of small ways that I managed my sensory world, or if they did they just thought “yeah, she’s a kid, she’s particular and picky.” But then I became and adult and those quirks didn’t go away. I continued to do kiddish things because they felt nice on a sensory level.

And then I got a diagnosis of autism, and I knew that if that had been around for all of my childhood, those quirks wouldn’t have been quirks. They would have been behaviors. There would have been an explicit program introduced into my life to extinguish them. When I was “normal” they were fine, but now that I’m autistic they are signs of my difference, and when you’re disabled every sign of difference needs to disappear. That’s how you survive in the world right? Never stick out, never appear incapable, never ask for help.

This all came into sharp focus for me last month when I was talking to a parent, and as a way of explaining one of their child’s struggles they said “the moment he comes home he always wants to put on his pajamas. I think it must be a sensory thing. What do I do?” I had to look her straight in the face and say “I do that. Don’t do anything.” She looked shocked. I can fake neurotypical decently enough. When I wasn’t diagnosed, no one ever imagined that this was something I should have to change, because I was an adult and I could do whatever weird stuff I wanted to. But here was this mom, convinced that because it was a symptom of autism it was a problem and she needed advice about how to manage it.

My advice? Let it be unless it’s hurting someone. So without further ado, here are all the things that would have been seen as problem behaviors to be extinguished if I were diagnosed as a child.

-Wearing a onesie on a regular basis, sometimes in public
-Chewing on things, all the things, including jewelry that I have specifically bought to chew on
-Having very specific dietary requirements that limit what I will eat (I will never eat fish, have a gag reflex every time I come near tofu, prefer to eat chicken nuggets as often as possible, and typically don’t cook beyond “press the button on the microwave”)
-Eating food that’s undercooked, specifically grains and sometimes raw pasta
-Stimming! I twist back and forth to crack my ankles when I’m standing, or sometimes roll onto the sides of my feet to stretch my legs out. I chew on my lips semi constantly, and when I was a kid I chewed on my hair.
-I will not talk on the phone unless it’s an emergency. I don’t care if it’s considered rude, I have such major anxiety.
-I grind my teeth, pinch myself, or dig my fingers into my arms when I’m upset.
-I lose verbal ability when I’m deeply upset and sometimes will use text instead.
-I periodically will sleep for 15+ hours at a time.
-I use my phone when socializing to manage anxiety (this was just seen as super rude for a long time, but no one told me they were going to use therapy to make me stop).
-I don’t sit upright in chairs unless I’m at work. No seriously, I slide down into them and turn into a weird little ball.
-I become obsessively interested in things and will engage in them for hours and hours to the point of almost hating them (video games, or a particular movie or TV series). Netflix binges aren’t seen as a symptom for most people.
-I wore two watches as a kid. No reason, I just liked it.

A lot of these are things that I KNOW neurotypical people do. But you add enough of them together and suddenly all of them are problems, because now you’re autistic and you can’t do anything that might be weird, or that might be because of sensory sensitivities/executive dysfunction/social issues. Why are autistics held to a higher standard than NTs? I might hazard a guess of ableism, but what do I know? I’m an autistic who still has all these negative behaviors.

Passing Means Always Passing: How Disability Systems Punish Functionality

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I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.

I can generally pass for neurotypical. I can be independent. Until I can’t.

There are two ways that this comes back to bite me in the ass: one is in terms of the services and supports I might want, and one is in terms of the personal blowback that comes from being disabled and neurodivergent. These problems appear either when I start to experience burnout from pushing myself to be functional for so long, or when stresses start to add up and I can’t keep up anymore.

There is literally no system in place to allow temporary respite for people with disabilities. There is absolutely respite care for families and caregivers, but there’s no system that will say to me “sure, take a vacation come stay at this place and we’ll feed you/take care of you, and we’ll cover your lost wages so that you can actually afford to take this break”. That sounds preposterous to me even typing it, because I have been so conditioned to think that I don’t deserve something like that, despite the fact that it would completely change my life for the better, make me more productive, more stable, more happy.

In order to receive services through the government, you have to prove beyond all shadow of a doubt that you are super disabled and really absolutely definitely need services or money. That means that if you are capable of holding down a job, if you make any amount of money, if you aren’t visibly disabled, you don’t get services, much less temporary services until you can get back on your feet that are easily accessible during a crisis.

Most services ask simple questions about your functioning rather than looking at how that functioning affects you. I can work, yes, but it exhausts me to the point that I sleep for 14+ hours in a go at least once a month. I can drive, yes, but it sets me on edge and gives me massive anxiety. I can call and make my own medical appointments, yes, but that’s about all I can do in a day. I have demonstrated that I can do these things, and now I’m expected to do them without any kind of repercussion to my well being because I’m “high functioning”. People don’t notice that they stack expectations very quickly: once you’ve demonstrated you can do one thing, they expect one thing AND.

If you can fake it for some amount of time, the system is not interested in the burnout or the toll it takes. It is not interested in prevention. It barely has the funding to help those who are already in crisis, much less those of us who would prefer to avoid a crisis.

On top of all of that, when you can mask for a while people start to think that that’s who you really are, or that it doesn’t affect you. We’re all so used to hiding our disabilities that when we can’t, it can result in all the ableism we’ve hidden from coming crashing down on us. Jobs assume that if you could complete the task yesterday you should be able to complete it today (and when you can’t you get consequences, or may even lose the job). Friends and family don’t understand why sometimes you can socialize and other times you can’t. It can look like you’re just an asshole if you work very hard to maintain relationships most of the time, but when you get burnt out you stop returning texts and phone calls or forget to reach out, miss a birthday, can’t be supportive.

Underlying all of these problems is the lack of recognition that “functioning” requires lots of other supportive activities: work requires showering and eating and transportation and sure maybe I can do one piece of that but not all of it. Maybe I can afford to maintain a home but I don’t have the spoons to keep it up and no one is around to help with that. Passing means being able to do all of the tiny things that keep up the facade around whatever you do: if you want to pass at work you have to pass enough to go out with coworkers, enough to bus or drive, enough to pack a lunch.

This is horrific for people like me. I can function well enough for long stretches, but one of the most common symptoms of autism in people like me (and particularly women) is exhaustion and fatigue. I am tired all the time. When I have a major event it takes me weeks to recuperate (case in point, my work’s conference and gala were two weeks ago and I’m barely starting to feel human again). If we’re lucky we find jobs and people who understand that our energy and functioning fluctuate, people who will pick up the slack when we’re struggling to get from bed to the car to work. But if we’re not lucky? We push ourselves until we can’t move, we become immensely depressed, we don’t understand what’s wrong with us because shouldn’t we be able to do all the things everyone else is able to do?

There are no supports when you can pass some of the time. It sucks.

When Mental Illness Makes You a Hypocrite

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I do a lot of things that I tell other people they shouldn’t do. Basically every day. I tell other people they shouldn’t skip meals or think of food as good and bad (food is not moral). But here I am, skipping breakfast literally every day and judging the hell out of my own food. It’s basically the most common mental illness experience as far as I can understand: we all think we’re uniquely bad in some way and deserve the cruelty we heap on ourselves in a way that no one else ever could.

I’ve been feeling it a lot lately though because mental illness also limits my ability to follow through on my values. The March for Our Lives was this weekend, and it’s something that I care a lot about. I believe deeply in the importance of public demonstrations, and of coming together when you have a cause. I didn’t go. I wasn’t busy. I could have gone, quite easily in fact. But I didn’t. The thought of it made me anxious and exhausted. The marches I have been to in the past knocked me out for a day or two afterwards, and honestly I have too much shit happening right now to manage that.

I feel awful about it.

If one of my friends came to me and said they feel like they aren’t doing enough for the movements they care about because they don’t go to marches and call their representatives, I’d remind them that there are a thousand ways to make a difference. Writing, talking to friends, supporting those people who are on the front lines, volunteering, working at an organization that supports the community, pushing for accessibility in events and spaces…these are all things that I do. I’d tell them that all of these things are important, and that staying functional and happy as an oppressed person is honestly job #1.

But I can’t listen to it when it comes to me. I’m special. I should be able to do more than other people, or do things that make me miserable because of…reasons.

It’s doubly frustrating because it feels like no matter what I do I betray my values in some way: go to a March, push myself too hard, feel like shit, and betray my strong value that each person has something to bring to social justice movements and it doesn’t have to be marching in the streets, and it’s ok to recognize your own limits. Or, don’t go, and feel like I’m betraying the movements I care about.

It’s amazing how many of these instances come up. I think we all have places where we have to compromise our values because we’re human and fallible and we can’t do all the things that we would like to or feel we should do. I can’t be vegan because I would actually literally die due to my sensory sensitivities+eating disorder. I can’t call legislators because it sets off my anxiety and I am a wreck before and after. I’m really awful at setting boundaries despite telling other people that they’re super healthy (because hey when you’re depressed your brain tells you any boundaries will make people leave you forever).

There are a lot of things that frustrate me about having mental illness/disability. But the worst is unquestionably that it impacts my ability to be a good person.

And yet.

Mental illness is not an excuse to be a bad person. But sometimes it’s definitely an excuse to not do all of the hundreds of things you’d like to do to be a good person. And I have to remind myself that there’s a difference between being a bad person and not being the best person (heyo look there’s my old friend black and white thinking). It’s easy to think that you’re making excuses for inappropriate behavior when you try to accommodate your disability. It’s easy to think you’ll slide into treating people badly because well I’m mentally ill and it’s just how I am. It’s easy to think only anxiety will keep you vigilant.

Sometimes I get so wrapped up in myself that I’m convinced the line between “using my disability as an excuse to be a shithead” and “accommodating my disability” is blurry and grey and hard to understand. I don’t think that’s actually true. Sure, there are some edge cases like “how often can I cancel before I really am a bad friend?”. But “should I choose not to do this thing that’s really hard for me and instead focus on things that use my talents”? That’s not one of them.

So sure, I might feel like a hypocrite or worry that I’m betraying my values, and even feel like I’m ignoring my own advice by even having those feelings (seriously, anxious people can feel anxious about anything). But I’d know if I were truly violating my own ethics. One of the hardest things to do when you’re mentally ill is trust your own assessment of a situation. But our own assessments are so important when it comes to our own values. I’m going to start practicing; I am living up to my values to the best of my ability. And that’s good enough, no matter what anyone else says.

 

Coming Out Disabled Part 2

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Welcome to part 2 of the Coming Out Disabled series! In part 1 we talked about who you might want to come out to, the pros and cons of coming out, and why you’d decide to do it. Here in part 2 we’re going to get practical: what should you actually say to someone when you come out as disabled? What are some scripts? And how do you manage when it doesn’t go the way you planned?

Formal Disclosures

Let’s start with the relatively simple; formally disclosing. This is disclosing at work, school, or another environment where you are legally protected and want to ask for accommodations.

“Employers are compelled under the ADA to make reasonable accommodations for qualified individuals with disabilities. An accommodation is a modification or adjustment that allows the individual to participate in the interviewing process or to perform the essential functions of his or her job. Examples of reasonable accommodations include providing written instructions, allowing the use of headphones to block office noise, a modified training program, flexible scheduling, etc.”-from Workplace Disclosure

In these circumstances it’s best to stay short and to the point. As we mentioned in the last post you may want to preemptively disclose if you feel that the environment is right. In that case you might say something like “I have autism. In particular I struggle with executive function, verbal instructions, and task prioritization. I don’t need accommodations right now, but I may in the future and would like it on record.”

More common however, is that you need an accommodation and you’re asking for something specific. In those cases it can be very beneficial to plan your actions ahead of time. Brainstorm (alone, with a therapist, with a trusted friend or family member) what accommodation may help you the most. Take the time to decide who you will disclose to: do you have an HR department? Do you feel comfortable disclosing to your direct supervisor? Is your direct supervisor the one who is causing problems, so you need to go to their supervisor?

Choose the person who is a. most effective at getting you the accommodation and b. that you feel comfortable speaking with. You can disclose in person or through email, whatever feels the most comfortable to you. Eventually you will probably want to get any formal accommodations in writing.

The script will probably go something like this “I have autism and because of that I have some difficulty with sensory processing. That means that the noise in the office is incredibly distracting and sometimes painful to me. I’d like to bring noise cancelling headphones as an accommodation.” You may want to provide some kind of brief information about the concern you’re bringing up to help educate your supervisor/teacher/etc.

Remember that accommodations have to be reasonable, so there is the possibility that you may not receive every accommodation you ask for, or your employer/school may suggest an alternative. However if you feel they’re ignoring the ADA you do have options, which we’ll address in part 3.

Personal Disclosures

There is no single script for disclosing to family, friends, and other close people. That’s because when you come out to your family and friends, you’re not just telling them one piece of information. You’re educating them about your entire diagnosis.

Coming out to your family is likely to be a much longer process of education and renegotiation about what you’re capable of and what supports you need. This is where the metaphor of “coming out” is particularly apt: within the queer community, people talk about the fact that you’re never done coming out. You have to keep deciding with each new person how much information to share.

That is also true with disabilities, but there’s an added layer for disabilities: for each new difficulty, need, and support you have to decide how much you want to share. For example you might tell your parents that you’re autistic, and explain that this is why you have struggled with friendships, with an intense fascination for rules, with falling too deeply into certain interests. They accept it.

A couple months later you realize that one of your struggles is with plans that change unexpectedly. Do you tell your parents and ask them to give you advance notice when things might change? What about a couple months later when you realize talking on the phone gives you anxiety and you’d prefer they text?

We’re told that having these kinds of preferences is picky and demanding, so it can become harder and harder to be open and honest the more accommodations you have to ask for. Part of coming out is the self care and self awareness to remind yourself that even if other people don’t accept your requests, they are still valid. You can set boundaries, and you deserve to have those boundaries respected.

My friend Jillian summed it up nicely:

“People are often afraid to disclose cause people might judge them, but I try to remember that the people that would judge me for disclosing are going to be the same ones that will judge me if I don’t disclose and happen to be autistic in a situation. Those aren’t the people I want in my life, or the places I want to be.”

Ok But Really What Do I Say?

Alright, fine, I’ll give you some scripts. To start out with, it can be nice to disclose to someone close to you when you’re not asking for anything. You might say something like:

“Hey mom/dad/friend/partner: I wanted to let you know something pretty important. I recently received an autism diagnosis/am autistic. There’s a whole lot of information about autism out there, but I want to give you an idea of what it means for me.

My biggest concerns are (fill in: sensory issues, executive dysfunction, eye contact etc. with a brief explanation of any technical terms and one or two concrete examples). If you’re interested, I can definitely tell you more about it, or give you some examples of how it affects my relationship with you. It might mean that I’ll ask to do things a little bit differently in the future and it would mean a lot if you can be supportive.”

They may have questions. Feel free to share as much or as little as you feel comfortable, and where you don’t feel comfortable just say “That’s a little personal. I might share it later, but right now let’s talk about (fill in other subject they seem curious about)”. They may disbelieve you or question the diagnosis. You don’t have to prove the validity of your diagnosis. Just stick to the story. “I am autistic. I don’t care if you believe it or not but I need you to respect that identity and respect my needs.”

Once you’ve established the diagnosis you may want to ask for specific accommodations. That can be pretty similar to a formal disclosure: “Hey mom: talking on the phone makes me incredibly anxious because of my autism. Can you text instead?” If you’re running in to pushback on these types of things, there are some amazing resources on setting boundaries out there. You deserve to have your diagnosis taken seriously and respected, and that should be a boundary that you set with those closest to you. You also deserve to have your accommodations respected, and you get to set the boundary that if those accommodations aren’t met (or at least if folks aren’t attempting to meet them) you will no longer be around them.

This is where disclosure gets hard. Because you may have to repeat yourself. A lot of times. Your family and friends may think they “get” it, but still forget, or still not fully believe it, or still question it somewhere in their brain. Disclosure is repetition. “No, I still cannot cook because the executive function of it makes me anxious. Yes, I know it’s been 5 years since I’ve had an eating disorder, this isn’t about that.”

Disclosure is also specificity. It’s about helping the person you love to understand presume competence, believe disclosure. What does that mean? It means explaining that while I can’t cook that meal, I’m perfectly capable of baking a cake from scratch because those are totally different. It’s explaining splinter skills: yes, I can do advanced calculus but no I can’t balance my budget. It’s constantly reiterating which places you need help and what that help looks like, while reminding that you’re not fragile, weak, or incompetent.

At its heart, disclosing to family and friends is agreeing to educate them, and educate them thoroughly on what your disability is and means to you. And that is your peek into the next installment in this series, which is other considerations when it comes to disclosing.

Coming Out Disabled Part 1

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Content note: in this post I am going to refer to the process of telling someone about your disability as “coming out”. I recognize that this language refers to the LGBT community and here I am using it metaphorically to point at a similar experience to increase understanding. I also recognize that there are problems with referring to all experiences of opening up about your identity as “coming out”, however the common understanding of the language means it’s a very useful move. I’m 100% open to criticisms and would love to hear your thoughts.

This will be a multi part post due to the many factors and ways of “coming out”.

A couple of years ago, I sent my mother an email. We weren’t at a great place at the time, so it was short and sweet: “I wanted to let you know that I’ve been diagnosed with autism. I’m not sure exactly what that means, but I thought it was important for you to know. If you have any questions I’m happy to answer them.”

This is not how you should tell your family important information about yourself.

When you receive a diagnosis like autism, or another disability it’s hard to know when to tell people, how much to tell them, what words you should use. Do they even need to know at all? This is your comprehensive guide to coming out disabled.

In this first post, we’re going to talk about who and when to tell, and talk about some of the pros and cons of coming out.

Who Should I Tell and When Should I Tell Them?

For the most part this is going to be a guide to disclosing an invisible disability because when you are visibly disabled you don’t get to choose when to have these conversations. However you can use these same kinds of guidelines to decide how much to disclose and when to have conversations about accommodations.

There are a few different types of people you may want to disclose to: friends, family, coworkers, acquaintances, teachers, landlords, and romantic partners (who could fit into some of these other categories but if you’re dating you might want to consider some specific things).

The one group of people I suggest you disclose to immediately are your medical professionals because they need to know what’s up with you.

Your Goals

When it comes to everyone else here’s what I would consider: what do you hope to get by disclosing? If you’re looking at a work, housing, or school setting, disclosure typically happens when you’re looking for accommodations. If you’re really struggling and need help, I would push more strongly to disclose. For family, friends, and acquaintances, one motivation to disclose is often to ask for additional help and support, but sometimes it’s also simply because you want validation and understanding, or because you want others to understand why you behave the way you do.

You may also want to “come out” for reasons similar to LGBT folks: it’s an important part of your identity and you don’t want to feel like you’re hiding or unable to talk about the things that affect your life and those around you.

Finally, it is possible that you want to increase awareness by disclosing. This is a pretty different goal from the others, and if that’s your goal, then it seems that there are fewer barriers to you disclosing as you’re willing to put in the time and effort to educate and fight stigma. We’ll get into that a bit in the next post.

Reaching Goals

Once you have identified what you hope to get by disclosing it’s important to consider whether you think disclosing will actually allow you to reach those goals.

Let’s start with work, housing, and school. Has the institution demonstrated that they’re willing to make accommodations? Is there a policy in place? Do you often hear supervisors or professors making ableist comments, or do they show some understanding of disability? These are the kinds of questions to ask yourself. The less that an institution has demonstrated that they’re willing to make accommodations, the more likely you will have to put in a lot of time and energy to reach the goals you had in disclosing. You may still wish to disclose, but you’ll want to plan ahead for a potential fight and gather resources first (ADA citations, potentially even a lawyer).

On the other hand, if you’ve got an institution that is vocal and open about providing accommodations, you may want to disclose your diagnosis preemptively. Especially in the workplace it can be good to let HR know ahead of time that you have a diagnosis so that if and when you ask for accommodations it’s already on file.

While disclosing at work and school can be challenging, it seems to be a fairly simple calculus to me: will I receive the accommodations I want from this? Even if the accommodations aren’t formal, it may be giving your boss a heads up so that they understand your needs as an employee.

Where things get a lot more complicated is with family, friends, romantic partners, and acquaintances. In many cases, you aren’t thinking in the same “I want to achieve this goal” way, but you wouldn’t be disclosing if you didn’t think it would improve things in some way. So think a bit about what reaction you would like from the person you’re disclosing to. Do you simply want them to know more about you? Do you want them to be a support person, and if so do you have ideas or examples of how they could help? Would you like them to be someone you can vent to? Or do you want them to be more understanding of behavior that is motivated or caused by your disability?

You can then evaluate how likely it is that you’ll be able to reach each of those goals. In some cases you might know that a friend is unlikely to be sympathetic. They may have a pattern of dismissing disabilities, or maybe they’ve been very unsympathetic when you’ve asked them to change behavior in your past. You can use these kinds of questions to determine if disclosing is likely to improve your relationship with someone or hurt it. I tend to think that if you’re close enough to someone that your disability is going to affect your relationship with them, it’s good manners to let them know about it. If you feel comfortable before that, or if you have a good gut feeling about someone, go for it! Some people think there’s such a thing as disclosing too early but I’m not one of them.

On that note, let’s talk about dating.

Romantic Relationships

Most people agree that if you want to date someone in a serious fashion there is a point at which you should disclose if you’re disabled. We’ll get into the how next week, but for now let’s talk when. Honestly there is no formula. I disclosed to all potential partners before we even went on a date, but it’s true that this might scare some people away (I personally think if they can’t handle me word vomiting about my depression I don’t want to date them). However most people think somewhere between date 3 and getting exclusive/serious. Your mileage may vary.

I would suggest that if you’re at a point where you’re calling each other “boyfriend” or “girlfriend” or a similar word, and they don’t know about something that affects most parts of your life, you may have waited too long. What’s good is that this is something you can always fix! You can disclose any time! Even if it means having a conversation about why you didn’t come out earlier, it’s better than keeping it hidden forever.

Why Wouldn’t I Want to Disclose?

So why am I writing this post if all these rules are so clear (ha)? Well because there are many things that can influence people NOT to come out. If you feel an impulse not to disclose because you feel uncomfortable, that is entirely valid, and no one has a responsibility to come out. However it can be helpful to consider what is actually motivating that discomfort and whether it’s reasonable or not.

Here are a few reasons that people choose not to disclose:

You are concerned that the person you disclose to will judge you, treat you differently, or misunderstand the diagnosis. This feels really awful, especially if they invalidate it, say it’s fake or you don’t have it, or belittle you in any other way. It is possible that this can happen and if you suspect someone might do this to you if you disclose PROTECT YOURSELF. No one deserves that shit.

However it’s also possible that you’re concerned that disclosure will be a long and difficult process. This is honestly true more often than not. When you come out, it’s not enough to just say “I’m autistic”. More often than not it means educating someone about what the diagnosis is, what it means for you, how they can help, and opening a channel for communication going forward. It’s something you keep doing over time, and can end up being a lot of work. It’s 100% valid if you don’t feel you have the spoons to educate someone at any given time, however I will say that some work on the upfront can save spoons in the future, so if you have a hunch that someone just needs to learn in order to be more helpful/understanding/supportive, it might be a good idea to brainstorm when you’ll have the energy to disclose and talk to them.

It’s surprising how often people are more willing to be understanding when they understand why you’re doing something.

Finally, some people are just private. That’s ok. You don’t have to share personal information about yourself unless you want to. However I would encourage you to remember that sharing the information can be very helpful and also decrease stigma.

Why Would I Want to Disclose?

With all that it seems like there might not be reasons to disclose. We have discussed some already, like gaining accommodations and support, but there are two that I want to focus on here.

First, every time you come out, you make it easier for the next person. Every time you educate, you increase the likelihood that another person with your diagnosis will be met with empathy and understanding rather than judgment. You aren’t required to take on this work, but it’s good, fulfilling, important work if you choose to do it.

Additionally, it can be incredibly important to disclose because it makes your life easier. Sometimes it’s not right away, and sometimes it’s not even about getting more support. Sometimes it’s as simple as being able to say out loud “I’m autistic” with ease and comfort. It’s about being yourself and cutting down on the amount of time that you have to mask and hide. Forcing yourself to act in unnatural ways takes a major toll on anyone. Being open about what you’re going through and who you are, behaving in the ways that are natural to you, and feeling comfortable to let down your guard does wonders for mood and ability to take on bigger challenges.

Coming out gives you space to relax. When people are supportive of your coming out, it’s incredibly validating. The gay community has talked before about how damaging it is to someone’s identity to live in the closet. Hiding your identity hurts no matter what kind of identity it is, and all of us deserve to be seen and recognized for ourselves.

Finally, and in my opinion best, is the fact that coming out can help you find other people who are like you. By talking about my diagnosis I have made some of the best friends in my life, people who understand and who are also autistic. It takes vulnerability, but claiming the label helps you find your people.

Look forward to some scripts and ideas for how to actually come out in part 2!

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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