The Depression/Creativity Link

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I’m having a hard time writing lately. My brain feels sucked dry, as if I just don’t care about the things that I used to care about. I’m not sure if it’s burn out on the topics or burn out on writing, but getting words out is a serious challenge right now. I think there are some deeper issues here about putting forth a lot of time and effort without seeing a whole lot of pay off, but there’s also something a bit more personal.

In a twist of epic proportions, I have spent most of this month not being anxious.

I forget the last time that happened. It seems this therapy thing is starting to get at the very deep seated issues and perhaps it’s convinced my brain to run a little more slowly. Everything seems a little more balanced: I’m happy with my work, with my relationship, with my friends. I haven’t had any serious depression signs in a while. Cool.

Here’s my worry: I feel less passionate. One of the benefits of anxiety was the heightened awareness that came with it. I noticed things that were a problem and I made connections between things. My brain was always racing, always on. I couldn’t move on from an issue without dealing with it somehow, and that included social justice things that didn’t even affect me. It was how the wheels of my brain and my work kept going. My emotions just don’t hit as hard and as fast anymore, which is really great for being a functional human being who can go through a day without feeling like the world is ending, but not great for someone who wants to have Serious Inspiration.

I feel so tired and dull and numb. My brain is quieter now. I am fairly certain that I’m not as smart as I used to be. I wonder if I’m finally feeling all the stuff that I was pretending didn’t exist for a long time, all the tiredness that comes from pushing too hard for years, the deep hurts that come from using food and work as your only coping skills. I wonder if I’ll swing back towards the middle some day when I’ve recuperated from the long illness that is depression.

I know that it is a myth that mental illness is the way to be creative. I have seen for myself that I think more clearly when I’m not starving or suicidal. But what I wonder is if balance makes passion difficult. When my brain is in the midst of depression and anxiety, writing often feels like the only escape. It’s a necessity. I’ll prioritize it over cleaning or calling my insurance or doing other unpleasant, adult tasks. Without that driving, painful, intensity of mental illness feelings, it’s easier to do all the functional things that one should do. I make more time for my friends, I make time to improve my house, I do stupid adult things like cleaning regularly and researching the best vacuum cleaner. I just don’t have as much time to write because it isn’t a screaming priority. I still care about writing, and I try to make time for it, but when it’s coming after a full day of work and therapy and freelancing and taking care of my cat and managing insurance, I just have less left in me.

There’s a selfishness to being sick that comes of necessity. It’s the selfishness that says I have no choice but to pay attention to me because I cannot function otherwise. I miss that selfishness. Even as I’m learning a different kind of selfishness that comes from saying no and setting boundaries and listening to my wants, I’m still not sure how to balance the things that I’m passionate about with the mundane tasks of existing. Maybe this is why so few adults can keep up their hobbies and passions. Intentional self care is far less exciting than the self care that comes out of desperation.

Without some need or want, my writing doesn’t have the drive that it used to. It comes out slowly when I make myself sit down and create a topic out of thin air. Questions and concerns aren’t whirling around in my brain, ripe for a blog post, the way they used to be.

In many ways this parallels a larger difficulty I’m feeling: a loss of identity. There was so much happening inside my head for so long that I felt as if there was too much of me. These days, I feel as if I’ve shrunk. It feels more manageable, but I’m sad about it too. There isn’t as much chaos, but I’m not sure what’s left. Writing has often served as a stand in for who I am. I’ve stripped away so much of the sickness. Now I suppose it’s time to build up again.

I’ve never heard people mention that recovery might take away some of the abilities that seemed normal for my whole life. Even if overall the changes in my life are positive, any change is hard, and this change has side effects that affect my fundamental self. It’s not as simple as “there’s no relationship between mental illness and creativity.” I don’t think I’ve lost all my creativity, but I do need to relearn how to be creative. I don’t want to ignore it for the sake of presenting a good face on recovery.

So here it is: recovery is making it harder for me to do some of the things that I love. I don’t need them in the way that I used to. I trust that eventually I will figure out how to make this version of my brain work for me, but that doesn’t change that it’s harder now.

 

Getting to the Heart of Things: Am I Just Making It Up?

I had so many issues as a kid

My therapist and I have recently been embarking on a long and poopy journey deep into the recesses of my brain to try to tease out some of the reasons my particular set of neuroses decided to express themselves through my body. Unsurprisingly, I find this a frustrating and unpleasant experience, as thinking at great length about the relationship between my emotions and my body makes me want to stick my tongue out and go “phooey. I just don’t like my body and that’s it.” But I am curious about what made it all circulate around my body. How did I go from needing control and perfection to needing control over food in particular and perfection in the form of an abnormally skinny body?

So we’ve been talking about blurry, early childhood memories, or tenuous connections between what I know I feel and how those feelings express themselves in behaviors, or my early family relationships and lessons. A lot of it feels like looking through darkly tinted glasses: I can make out shapes, but I’m not entirely certain what I’m looking at. I’ll be sure there’s a connection between my feelings of uncertainty early in childhood and my eventual eating disorder, but teasing out that relationship and the catalysts later in life seems impossible. Any given issue, like my need for control, has about 15 different large elements that could have been an important “cause”. We’ll spend an hour delving into a particular relationship or incident, and by the end of the time there will be something like a narrative that offers an explanation.

It’s helpful in that knowing where something comes from helps me tailor my self care and my coping mechanisms. I’m a control freak because I grew up around some volatile people? I’ve surrounded myself with very stable folks who will listen when I tell them I’m scared they’ll get angry with me if I do x action. I seek reassurance that their feelings are stable. Understanding what needs are going unfulfilled helps me to meet those needs.

But on the other hand, I feel like I’m making things up. With so many possible explanations, all of which can be turned into neat narratives, how do I know which one is right? Even more worrisome is the fact that memory is so very fallible. There are many examples of people suddenly remembering things that never happened during therapy sessions, and even if it’s nothing quite that sinister, it’s easy to reinterpret or misremember the past (especially early life) to match your current interpretations. Is it really helpful to try to delve back so far? How much accuracy can I have when I’m partially relying on secondhand information from my parents about my early life, supplemented with fuzzy, emotional memories.

Here’s something that a very literal, black and white, absolute thinker like myself has trouble with: there is no correct answer to the how of my personality. A life cannot be reduced to a couple of simple equations that can be solved if you plug in the correct self care. There is no correct narrative about my life. I do not make sense and I never will. These are not judgmental statements. Ambiguity and randomness are facts of life. We just don’t like to admit that they apply to ourselves, especially when they end up creating pain in our lives.

So is there really any point in trying to make sense of all the billions of small factors that combined to give the world my current self?

I think there is. Each narrative contains some elements of the truth. This week I may focus on some of the difficulties my parents had when I was a child and the ways that it impacted my sense of stability. Next week I may focus on my natural tendency towards order and how it expressed itself as far back as I can remember. The week after I might think about the difficult relationship I had with my brother as a kid. Each of these things contributed something to the way I am right now. When I find answers, I like to hold on tight to them. This is how it is. I don’t get to do that with these kinds of answers. Each one is just a partial, flawed answer. I have to be gentle with them, or they will fall apart. Each time I try to grab onto one too hard and say “this is who I am, this is why I am,” it stops making sense.

The multitude of narratives also helps protect against all the bits that I don’t remember quite correctly. I have to fit competing narratives together, which means parts that don’t make sense get challenged. Any time I become completely convinced that one thing explains all of me, I have to remember how easy it is to tweak my memories to fit.

Of course trusting myself to figure it out in a reasonable manner is even harder as someone with anxiety and depression: I don’t trust my abilities and my brain. This is a hard task to begin with, but for those of us in therapy who really need to undertake it, it’s even harder. It’s easy to imagine that we’re lying to ourselves to make life easier or explain our behaviors away. I once again appreciate the importance of having a therapist I trust. I once again appreciate that this long term work of building a life that balances out my difficulties is impossible when I’m in crisis. I once again appreciate that nuance is necessary even if I hate it.

Posts like this leave me unsettled because there’s no conclusion. I do think that speaking openly about what therapy is like and how it can be difficult is important. I also want to recognize that therapy changes over time. I have been in therapy for almost 5 years straight now, and while ideally therapy is not unending, I have been working on distinct and distinctly important things throughout that time. This feels like it’s close to the end, and that’s exciting, even as I realize that there’s a strong possibility I’ll never be done with the work of accepting that I will never make sense of myself. So no, I’m not just making up stories to make myself feel better. There is some element of self creation in the narratives I choose to talk about, but the overlapping narratives give me some insight into the truth, as far as it exists. That may be the best I can do.

The Pitfalls of the “Gifted” Label

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Note: Sorry I’ve been away for so long. I was putting on a conference and gala at work, then moving! We should be back to our regularly scheduled programming now.

Lately I’ve been feeling a lot of pressure to do something awesome. Maybe it’s the season, or the fact that I’ve been feeling more like an adult than ever (with my real, big kid job, and an apartment that’s just me and my boyfriend), or maybe it’s seeing friends around me graduating from law school or getting books published or starting their own blog networks. Whatever it is, I’m wondering what I’ve been doing with my life

It happens periodically. I grew up with a lot of messages that I was pretty smart and would do pretty cool things. So every now and then I’ll remember when I was 11 and wrote my first draft of a novel. I remember hearing about Christopher Paolini and scoffing, knowing that when I wrote MY novel, no one would be able to tell it had been penned by a teenager. I imagined my name being on everyone’s tongue by the time I was 20, as That Girl who had shattered all expectations, been a prodigy.

I don’t talk about it very often, because it’s embarrassing to tell people that when you were a child you thought you would be a famous writer. But it’s not so ridiculous. My parents and teachers were all supportive in the way that makes you think you’re one of a kind special. I was gifted, I was capable of anything, I needed special work and special challenges to match my brain. At the time, this kind of encouragement was pretty par for the course. It was early in our understanding of gifted kids. I’m glad I got support and I’m glad I had people who pushed me to do more.

But I’ve begun to suspect that labeling a kid gifted is setting them up for disappointment later in life. Last week I was at a conference for work, and saw Rebecca Banks Cull and Diane Kennedy discussing autism and giftedness. They said something that really stuck with me. “In our society, giftedness is synonymous with achievement.” Until that changes, when we tell our kids that they are gifted, we are telling them that we have certain expectations for their achievements. Those expectations are almost always financial success, academic success, or other markers of societal status. More than that, many gifted kids get the message that their giftedness is only real when there is an external way to measure it: IQ, a book deal, a position as a college professor, prestigious awards, or success in their chosen field.

For me, giftedness often presented itself as speed. I picked up on things quickly, I completed my work before anyone else, I always finished tests early, and my work was still typically high quality. I assumed that everything else in life would come quickly too. I was told from a young age that I was working beyond the typical abilities of people my age. I was told I developed empathy early, that my abstract thinking appeared sooner than other kids, and that I had a maturity beyond my years.

So here I am wondering why I feel so behind in life.

I don’t think it’s because I’m actually doing anything wrong. I’m at a pretty average point in life for a 25 year old. But after a childhood being told that not only would I accomplish beyond my peers, but that I would do it quickly and easily, it’s easy to assume that I’ve done something wrong when my life just looks average. It’s easy to think that it was all a lie when people said that I was gifted, or that I have been lazy, or that I have squandered my talent. It’s easy to assume that the problem must be with me instead of with the fact that getting things done sooner isn’t necessarily better, or that working and living as an adult is drastically different from school, or that perhaps my talents are not easily measured by achievements.

The biggest problem with that gifted label as I see it is that it gave me the message that I didn’t really need to persevere. Things always came easily to me, and that was praised. So now that things are taking longer, and requiring more commitment, I begin to think that I’m incapable of doing them at all. I’m certainly not going to stop. I’m going to get a book published. I’m going to make a difference in the world somehow. But it feeds my imposter syndrome in a serious way to look back at the expectations people had for me when they labeled me gifted and compare those expectations with the achievements I have today.

I think that it’s always dangerous to give a child a label that implies they will be successful. The world is too random and out of our control to ever guarantee that. Giving a kid the idea that they can make themselves be successful is a dangerous idea, and a set up for disappointment and self hatred. I must have done something wrong, or I would have changed the world by now.

Or maybe, just maybe, those expectations are too high, unnecessary, and irrational. Maybe I’m doing just fine, and patience is the lesson I needed when I was told I was special. Perhaps it’s still the lesson I need. Average is ok. Average people do outstanding things all the time. There is no essence of myself that is gifted, and is just waiting to escape given the right circumstances. Mostly, doing amazing things is a lot of boring work. That’s what giftedness doesn’t get at. The mundanity of accomplishment, and the way that amazing moments of understanding don’t do a whole lot to pay the bills and get you through the everyday. Instead of focusing on what I haven’t accomplished yet, I want to remind myself that I still bring insight and curiosity and creativity to the world. I am still valuable, even if I haven’t translated Linear A yet.

Burnout and Self-Denial: Accepting Aspiehood

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I think I’m burning out.

It’s really hard for me to type that. Accomplishment is my self esteem. Staying busy is my form of sanity. Functioning through anything is my identity. It’s a family legacy. It runs in the women of my family: through an alcoholic husband and small children. Through law school and working and activism and creation. Through depression and keeping a family afloat. Through wars. When I think of my mother and aunts and grandmothers, I see women of steel.

I’ve always felt that pressure, and I have always lived it out by doing. I was the getting straight As, doing every extracurricular, working nights and weekends, writing in my spare time, graduating from college in 3 years type. I was the kind of person who’d go to the gym for 4 hours just to see if I could. I survived an eating disorder, major depression, self harming, anxiety, and just kept getting up and putting one foot in front of the other. I have always felt a sick kind of pride that no matter how exhausted I was, no matter how bad the depression was, I still made it to class, I was never fired from a job, I kept up my grades, I went to the gym, I got my shit done.

Yesterday, I left work early and slept for four hours. Over the weekend I took an eight hour nap. I haven’t been to the gym regularly in weeks. My blog posts are sporadic and infrequent. I know that I’ve dropped the ball on volunteer positions, and as a friend, and as an employee. I’m working less than I ever have, and I am more tired than I have ever felt before. It feels awful, but the more I fight it, the more tired I get. I have gotten blood tests and sleep studies and everything comes back fine. I am perfectly healthy.

Last year I was diagnosed with autism (Asperger’s for those who still use those terms). It felt weird. I haven’t done anything about it. I wasn’t sure what to do about it. I was busy. I had other things to keep track of and fix and plan for. I’ve been reading about it, wondering if I can implement any of the coping strategies I see, but not quite getting how they apply to me. I have some sensory sensitivities, but not the kind that I can accommodate very well: I am light sensitive and tough sensitive and taste sensitive. I’ve made all the accommodations a person can, by not touching people and keeping my shades drawn constantly and eating a limited diet. I have social anxiety, but I don’t script, and I don’t find it helpful to play out scenarios with other people (this causes me more anxiety). I want to incorporate more proprioceptive feedback into my life, but I can’t just install a swing in my room and I don’t know what else to do. I don’t feel at home in the autism community, and I don’t feel understood and helped by their suggestions.

But more than that, I never notice that I’m being worn down or stressed out by things like sensory input or social outings. I don’t like big groups of people I don’t know, but I avoid that. I don’t notice myself consciously trying to figure out social rules, or puzzling out who I should emulate or how I should behave. I wonder over and over if I really am autistic. I wonder why the label matters, if it matters. Why did I even pursue a diagnosis?

Ok I promise these two things are related.

It hit me really hard last week when my therapist asked “what if the fatigue is sensory?”

There’s this thing called autistic burnout that happens when you spend all day every day coping with a world that doesn’t entirely make sense and is fairly unpredictable, with your brain running full speed making all kinds of connections and trying to consciously puzzle out social rules, and all the while your senses are overloaded and overwhelmed. Basically you get exhausted and you start to shut down. It might seem like you’re getting tired from nothing, or that you’re just not capable of doing a whole lot, but really it’s that your brain and body are working constantly to stay regulated. You need more sleep. You don’t have the energy to do things you used to do. You can lose coping skills or functions that you used to have. You might feel foggy or have a hard time concentrating, or feel like your memory has gotten worse.

It feels like depression but not, because when you’re depressed your body isn’t actually fatigued, you just can’t bring yourself to move and it feels full and empty at the same time. The flavor of depression is one of listlessness and heavy air and rot. Nothing is worth it.

With burnout, things are very much worth it. I want so desperately to keep going, but my body and mind just give out. I fall asleep when I don’t mean to. I make inattentive mistakes. I find that my muscles are going.

So here is where I’m at: I think I’m burning out. I didn’t notice things like lights and noises and smells until I did, and now they are overwhelming. I didn’t notice overthinking and questioning and worrying about everything I was doing until I stopped being able to do it and I started messing up. I didn’t notice all these autistic characteristics until I couldn’t mask anymore. It’s amazing how internalized and unnoticed my coping skills were. And over the last few years they’ve been dropping away as I both become more forgiving towards myself and depleted my reserves. I know there are others out there like me who have a hard time seeing all the characteristics in themselves, even as they suspect strongly that they have an Aspie brain. It seems like falling apart is the only way to properly see the pieces.

I’m in this space where I still want to be the person I’ve always been, the organized and accomplished young woman who does everyone proud. But I’m slowly becoming aware that it is damaging to want that. I am a flawed, exhausted, broken being, just like every other person. I can see that others don’t need to earn their self worth. I just can’t see it for myself. I don’t know how to expect less of myself. I don’t know how to accommodate my sensory needs and my social needs and my overworked brain. I’ve always wanted to know how to turn it off, but no one will tell me what to do.

I’ve got these conflicting identities of “autistic” and “woman of steel,” except that I like to pretend that the autistic part doesn’t affect me. I haven’t really incorporated it into my self understanding. But I think I might have to if I want to deal with this burnout. This may be the point where I finally find concrete actions to take. Maybe it’s the self denial that’s been so exhausting.

I hate personal posts because I always feel as if I need to find a way to make it relevant to everyone else out there. But I suspect it already is relevant to more than one of you. It might not be autism, but there are approximately a billion different reasons that we each have different limits when it comes to our energy levels. Sometimes it’s staring us in the face that we need to deny less of the reality about ourselves. I think it goes back to the post I wrote earlier this week: being strong isn’t the same thing as requiring no rest and no care. I know I am stronger when I listen to my own needs, and understand how I’m built. I am not steel. No one is. There is no pride in pretending I am. Maybe that’s the self-acceptance I’ve been looking for.

Feminism Does Not Mean Strength, Success, or Power

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Last night I decided to watch The Mask We Live In as it had just arrived on Netflix, and after finishing it I couldn’t help but go back and rewatch Miss Representation. It’s still a pretty good movie, that introduces a lot of basic concepts about feminism and media in a really accessible way. But I found that as I was watching it I started to get really anxious.

It was a kind of anxiety that I hadn’t felt so acutely in quite some time. “You’re missing your window of opportunity,” is what it said. “What will you become?” it asked. “Why doesn’t anyone look up to you?” it taunted. It was very talkative anxiety. I remembered the feeling that I used to have as a kid that my life could be the kind of thing that someone would talk about with a tone of awe. In Miss Representation, Condoleeza Rice talks about her friend Sally Ride and says that if Sally had waited to see a female astronaut before she decided to become one, Ride never would have gone to space. I wanted to be that story for someone. THAT was what a feminist looked like in my young eyes.

In a lot of the talk about feminism, I heard often about accomplishments. I heard about the wage gap. I heard about women not being in positions of power. I heard about the ways that women are held back by bias or harassment or lack of representation. I heard that women needed to be more active and powerful in politics and large corporations, that we needed more women like Marie Curie or Sheryl Sandberg or Ruth Bader Ginsberg. Women who fought for their right to a space at the table in the field that they loved. I heard about the importance of highly visible role models, and the way that feminism will never advance if we don’t have women in positions of power. I rarely heard about average people, my mom or her friends. I more often heard stories of individual, exceptional women.

And so I learned that feminism meant being successful. Successful enough that your name is still known today. Successful enough that you have power over other people, often power in a traditionally capitalistic sense of the word if not in the governmental sense. Successful enough that other people could see you and want to be you. So successful that you are in fact exceptional.

This belief has been incredibly damaging in my life, and so I want to identify it, identify what’s wrong with it and try to understand how we can do better.

Definitionally, not everyone can be exceptional. I firmly believe that everyone can be a feminist. The actions, thoughts, and attitudes of feminism are difficult, but they are things that everyone can strive for. But more than that, it takes away the societal responsibility for improving circumstances and says that some super women have to fix things.

More than that, it creates a nice, impossible standard for young women. It might be a very different kind of impossible standard than traditional beauty standards or expectations of submissiveness and passivity, but it is just as difficult to attain. I have found throughout my life that I hold myself to expectations of perfection in a conviction that that is the only way to make a difference and give my life meaning and purpose. Now partially that’s my own issue, but I see some direct parallels with a feminism that doesn’t allow for nuance. If the way to be a feminist is to somehow, through sheer will or awesomeness, break through barriers that no one else has ever been able to break, you’re going to have some high expectations for yourself. It’s easy to assume that individual effort and ability are what counts when it comes to being successful, but let’s not forget that there are so many other factors at play (family support, random chance or luck, connections, timing, all the wide variety of axes of privilege and oppression, etc.).

When we hold up individual women as responsible for the great strides of the past, we imply that individual women should become great enough, all on their own, to make great strides into the future. Of course the truth is that making the world a more just and equitable place takes all kinds, and changing the world requires lots of people working together and supporting each other. It takes luck and privilege and a lot of circumstances aligning in the right ways, just as much as it does the hard work and talent of the people involved. It’s damaging to any individual who wants to make a difference if they assume they have to do it on their own, or that they should ignore their own needs, circumstances, and preferences in order to live up to some idealized vision of the Feminist Woman.

I want to think about other kinds of feminist inspiration we can have for each other. Inspiration that doesn’t create a damaging picture of how much any individual should be capable of by themselves. Let’s try this on for size:

I have a friend who has serious social anxiety and agoraphobia. The other day she contacted me out of the blue and asked if I wanted to go to coffee over Facebook. This is bravery. This is creating connections that sustain us. This is using the technology available to make the world work for us.

Every time I have an open, honest conversation with my partner about consent, preferences, and sexuality, I am prioritizing my own needs and sexual health. That is feminism. I’m an inspiring bitch.

When I see a female friend get honestly angry with someone else and express their boundaries in a clear fashion, I am seeing feminism at work.

When my friends demand their proper pronouns, or someone politely asks about pronouns, I am witnessing change.

These are not grand narratives. They are everyday moments that are often uncomfortable and don’t have huge payouts. But every time you question your sexist relative, speak honestly of your own experience, engage in self care, or ask for what you want, you are being inspiring to me. Sure, we also need the big changemakers, the people who bulldoze barriers in a powerful way. But we need all the rest of us doing a thousand small things every day to make those changes stick. That’s just as inspiring to me.

Awareness vs. Acceptance: We Do Need Both

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It’s almost April, which means it’s almost Autism Awareness Month, which means it’s almost the time of year where Autism Speaks becomes even more insufferable and awful than they are the rest of the year and a lot of advocates try to combat the Speaks messaging with messaging of their own. I’m all for reminding people that Speaks is not the only or even one of the better autism organizations, and for giving people concrete facts about what Speaks has done to harm people with autism.

But one thing that has been grating on me is that I see the message “we need acceptance not awareness” all over the place during April. I get it. We do need acceptance. There are lots of organizations that use the guise of “awareness” to peddle really harmful BS.  Autistic people really do need the same respect, autonomy, and fulfillment as anyone else, and nothing else will improve their lives as quickly. These are great goals and I fully support them. But a lot of Autistics and their families say that people are already aware of autism, so we don’t need awareness anymore.

I strongly disagree.

Personally I’m a big fan of the word “and”. We need acceptance AND we need awareness.

When I came out to my parents as autistic, they almost laughed at me in disbelief because they had a very different picture in their mind of what autism was (think more Rain Man, less me), and were not aware of how it can present differently in women. I still hear stories of people getting misdiagnosed because their therapist didn’t think women could have autism.

When I talk to friends, they still use “autistic” to mean socially awkward or obsessive, but they have never heard of many of the other traits of autism, nor do they understand the whole “spectrum” concept.

When I explain that people on the spectrum can have sensory sensitivities, I often am met with confusion or surprise. I’m still seen as picky or high strung because I cannot eat certain foods without a gag reflex. People are confused when you call perfumes and scents an access issue.

Sure, people know that autism exists, and might have a vague understanding of what it is, but many, many people don’t understand how it actually affects people. I tend to run in circles that are pretty up on psychological information, and even my circles are full of people who require a lot of 101 explanations of how their behaviors can make my life hard or how to do basic accessibility or even what autism can look like.

Awareness is not simply awareness that autism exists: it’s awareness of what autism is and why autistics behave in the ways they do and what the current issues are in the autism community. Of course we can’t educate every person on every nuance of autism, but that doesn’t mean we can’t give most people a solid foundation of understanding that will help them be more accepting.

Because I have a secret about human behavior for you: people will not accept your behavior unless they understand it. Acceptance relies on awareness. People are way more likely to accept your differences if they have some understanding of why you do what you do and have at least some ability to predict your behavior (does this sound familiar autism community? Do we sometimes find it hard to accept things that we don’t understand or that are sprung on us without prep time? Can we start implementing universal access in our own lives by walking allistic people step by step through what to expect?)

Now sure, it would be way better if we could all just accept each other’s differences without question, but that’s not how humans work. Some people can make that happen with a lot of work (in DBT we call it the skill Radical Acceptance), but acceptance is much easier with an explanation. We don’t just need to be aware of the existence of autism, but of the reasons it might push someone to behave in what we view as incomprehensible ways. We need to make autism comprehensible to others.

So no, I’m not done educating or increasing awareness. I want people to be aware of sensory sensitivities and what it means to be nonverbal, I want people to be aware of meltdowns from the internal perspective, I want people to be aware of what a fidget is and why someone might use it, I want someone to be aware of how their language and communication style might be alienating someone. And THEN I want them to accept all these differences. But I don’t think we’re done with step one yet. So I will still advocate for increased awareness, because I have experienced the ignorance of many folks when it comes to autism.

As a final note, none of this means that we have to do awareness before we can do acceptance. I think we should be working on both all the time. I am all for criticizing awareness done poorly. If you’re spreading misinformation (Jenny McCarthy…Autism Speaks…looking at you), then I’d rather you shut your mouth than try to help. But criticizing the whole idea of awareness? That doesn’t make sense. I want people to understand my life. I am always for more education.

Asking for Accommodations Doesn’t Mean I’m Delicate

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There’s this thing that I’ve noticed from people who are generally very nice and reasonable people when I tell them about the ways that my neurodivergent brain affects my life. I might say something simple like “I really can’t handle socializing for extended periods of time,” and ask for an accommodation.

Then comes the special tone of voice, one of mixed surprise and condescension. Especially when my accommodations are for something that seems small to me, like asking that people text instead of call, or when I say that I prefer to be in a small group to a large group, I often get the sense that people are astounded that I’m so broken.

Some people have even gone so far as to say things like “Well YOUR life sounds so much more stressful than mine. I can call people on the phone just fine.” There’s an assumption that because my brain prevents me from doing certain things, I live in some kind of hellscape or that I’m severely limited in what I’m capable of doing, sitting alone in my house wishing I could pick up the phone or go out and party.

It’s weird, because when I say things like “I have lots of anxiety about talking on the phone. I really hate it and would prefer not to do it,” I am not looking for sympathy, nor am I trying to tell people that I’m unhappy with my life. I’m not trying to make myself out to be fragile or delicate or in need of protection. I am asking for accommodations. I’m letting people know that I’d like to do things slightly differently from other people. Often I’ll include the full extent of why I’m asking for the accommodation because otherwise people think I’m being a diva or won’t respect my request.

There’s a really challenging kind of circle that you get stuck in when you’re disabled or mentally ill or asking for accommodations: explaining to people how hard things are means they start to discount your competence, but not explaining means that they will assume you don’t need the accommodations.

More often than not I’m likely to let people in on just how hard things can be because we need more honesty in that discussion, and because often people don’t really get what it means to be chronically mentally ill. But I’m getting incredibly sick of people thinking that this means I’m fragile, or acting as if they’re better than I am in some way because they can do “basic” tasks. Bully for you. Sometimes I can’t eat food without breaking down. But you know what I can do? I can write a mean blog post, take over a social media page without blinking, and alphabetize the shit out of anything. I can see patterns in things, I can make connections between things, and I can hold down some awesome conversations about everything from living forever to the intricacies of disability activism.

But you know what? Even if I COULDN’T do all those things, I still wouldn’t deserve your pity or your condescension. Because there’s nothing about talking on the phone or hanging out in crowded places that makes me less or more human. I am not a worse person because I am uncomfortable with times when I can’t quite catch the social cues for when to start and end sentences. My life isn’t WORSE because I can’t do or feel uncomfortable doing certain things. It is made worse by people who won’t accommodate my need to not do those things and by people who accommodate with a side helping of judgment, but there’s nothing about talking on the phone that would leave me fulfilled in a way that I’m not right now (in fact I maintain that my life is way better now than it was when I was trying to do a lot of things that set off my anxiety).

Asking for help doesn’t make me weak. It is not an invitation to comment on the value or fulfillment of my life. It isn’t something that puts you above me. In fact it’s probably a lot harder than most things most people do. It is self advocacy. But more than that, it isn’t an admission of limitations. When I say that I have trouble with something I’m not saying that I’m giving up on my life or giving up on interacting with people. I’m asking for help to find another way. It’s just like someone who can’t reach a shelf asking for a stool: it’s not a judgment about their abilities. It’s a recognition that they need to do it differently than someone taller.

I see too many people acting as if a statement like “I can’t talk on the phone without getting anxious” is the end of the conversation. It’s not. It’s the beginning. It’s the point at which you say “can I text you instead?” or I ask for another accommodation. It’s a statement of fact but not a recognition of failure. There are things in this world that I will never do. Run a marathon, quantum physics, and also feel comfortable in group settings. No one gets all uppity if I say I’m never going to understand the intricacies of the theory of relativity, so why do they make faces like they’re sucking lemons when I say I’m never going to feel comfortable in certain social situations? None of those things diminish my ability to live a good life that I enjoy and that contributes something to the world around me.

And I suppose that’s the point isn’t it? When I say there are certain things I can’t do, some people think that those things are a prerequisite for being a functional, happy human. They think that I’m diminishing myself by recognizing there are some things I can’t do. They seem to think that I’m fragile, or I need protection, or I can’t be independent because I can’t or won’t do certain tasks that they see as basic or necessary.

There are certain activities that enough people do that they have become synonymous with “human.” Of course these standards of “basic human tasks” have changed greatly over time and in different places, so no, there’s nothing inherently human about eating three meals a day, or being able to strike up a conversation at a coffee shop, or making small talk. When people hear that I can’t do some things they take for granted, they don’t understand that there’s nothing all that great about the things they take for granted.

The more I can question the idea that I need to do certain things in a certain way in order to be ok, the better I feel. I can’t do some things. So what I need from the people around me is just a little bit of adjustment. There are some things all of you can’t do that I can do. It doesn’t make you less than me. I make adjustments for people around me all the time without giving them any side eye. Can we make it mutual?