Neurodiversity is Not An Autism First Movement And Cannot Be Autism Exclusive

Disclaimer: this post is about my personal experiences with the neurodiversity movement. If others have more positive experiences, please point me in the direction of those communities. I would love to find them.

The concept of neurodiversity originated in the autism movement, and was created by an autistic person (from the research I have done, it was created by Kassiane, although as an internet term it’s a little bit difficult to know who was the first person to ever use it). Most everything I’ve ever read about neurodiversity is written by an autistic person or is focused on autism acceptance. Few mention other neurodivergences by name.

Ableism is unfortunately incredibly common, but for some reason I see a disproportionate number of conversations about ableism circulating around autism, and when people are accused of not understanding or being comfortable with neurodiversity, it’s nearly always that they have not respected autistics or their needs well enough. This first came drastically to my attention a year or so back when an autistic writer got into it with Rebecca Watson over using the phrase “too stupid to breathe,” (and apparently additional comments, although no one has been clear to me about what those comments were). It ended with Rebecca asking that writer to leave the site.

Many people have criticized Skepchick of being ableist since then, but for some reason no one brings up the fact that nearly every writer on the network has some combination of depression, anxiety, PTSD, eating disorders, ADHD, dyslexia, or a personality disorder. There are many writers who write openly and often about those issues on Skepchick (including yours truly). IT is of course possible for a place to include many neurodivergent individuals and still be ableist, but it seems odd to not address those neurodivergent individuals when asking if the place is welcoming to them or not.

Note: none of this is to speak one way or the other on how that incident went down. It is to say that many other writers who are neurodivergent were blatantly ignored in the conversation. I find it telling that none of them have autism but do have mental illnesses or learning disabilities.

I’m incredibly grateful to autism advocates for starting this movement. What I’m not ok with is the way that any form of neurodivergence other than autism seems to disappear in discussions of the movement. Sometimes learning disabilities or ADHD get a shout out, but despite the fact that I am deeply enmeshed in the movement, I still find myself unsure if mental illnesses “technically” count as neurodivergences. But if anything is a sign of your brain working a little differently, chronic anxiety, depression, or a personality disorder has to be it. And if the neurodiversity movement wants to be serious about accepting and supporting all diversity, they have to be willing to accept those whose brains changed over time, not just those who were born that way.

I am multiply neurodivergent. I only found out this month that I am autistic, and still have not talked publicly about it very much. I have never felt welcome in the neurodiversity movement. I often find that my experiences are talked over by folks with autism because mental illnesses occupy a hazy status in the movement. Some people don’t want to be associated with them because they are more clearly “broken” or “disordered” than autism. That is not ok.

If someone doesn’t understand autism or isn’t willing to make certain adjustments for autistic individuals, it doesn’t seem to matter whether or not they have been strong supporters of folks with other neurodivergences. And I understand that doing well many times doesn’t fix messing up. But why aren’t we even talking about it?

The latest incident happened over at The Mighty. They posted something fairly shitty, people called them out on it, they took it down and apologized. I feel like it should have been an open and shut case, because they took full responsibility for a lapse in judgment and did what they had been asked to do. But instead, people started jumping on the ‘fuck you Mighty’ bandwagon. Now there have been a number of criticisms, some of which seem really legit (way too much inspiration porn, not enough people getting paid) and some of which I have issues with. Namely that many criticizers say that the Mighty is prioritizing parental voices over the voices of people who are autistic and disabled, and that they don’t post from people who actually are disabled.

Which is, to be honest, bullshit. The post that fucked up in the first place was written by an autistic. I write for The Mighty and I am clearly, openly, someone with not an NT brain. The one place on the Mighty that does seem to be parent dominated is autism articles, but if you look at the mental health writing it is primarily by people who have mental illnesses. For some reason that all gets ignored and talked over by the people who say that we need to have platforms for people with disabilities.

You don’t get to ignore the voices of people who don’t agree with you and act as if their identities don’t exist because they aren’t how you express your identity. There are autistic people on The Mighty who are parents and post those Mommy Blogs you hate so much. And those people are still autistic and they still have a place in the autism community. There are people on The Mighty who post useful, interesting information about how they deal with their mental illness or disability. They count as part of the neurodiverse community that we’re aiming for, even if they aren’t autistic.

And that’s true of a lot of sites that are criticized for being ableist. Other disabilities, especially things like depression, anxiety, personality disorders, or eating disorders, get ignored. Sites are criticized for not listening to disabled voices when the people being criticized ARE THEMSELVES DISABLED. This is mind boggling to me, as the neurodiversity movement purports to be helping all people who aren’t neurotypical.

If you want to have a conversation about the right and wrong ways to talk about and approach disability that’s fine. But when your criticism is “you’re not listening to disabled people and you’re silencing disabled voices” you better make damn sure that you’re not talking to any disabled people because you have just erased their identity. And I see that happening over and over in incidents when neurodiversity advocates are calling out ableism.

There are important criticisms to be made of a variety of sites that host parents of people with disabilities or even people with disabilities themselves. There is such a thing as internalized ableism, and it’s important to call out things like inspiration porn or sites that host more parents than individuals actually affected or parents sharing personal information without a child’s consent. We should talk about these things. But those sins are not the same as silencing disabled voices. They are about balance and how all people (including neurodivergent individuals) tell stories about disability. And more often than not, an organization is not all good or all bad. It is more and more common for a site to be hosting mentally ill individuals writing about their own experiences but focusing on parents instead of developmentally disabled folks. That’s a dynamic we should be talking about.

But I do not feel welcome in the neurodiversity movement when the (very real) criticisms about autism parents are allowed to eclipse any writing that I may do or the fact that there are boatloads of neurodivergent people speaking up about their (not autistic) experiences. Those experiences just don’t always match up with what neurodiversity advocates think they should be, and they often aren’t about autism. There needs to be space in neurodiversity advocates for all kinds of neurodivergence. The movement cannot prioritize the needs of autistics over anyone else. I recognize that the focus on autism comes from a history of abuse, but autistics aren’t the only ones who have lived that history. Neurodiversity movements need to do more work to accept and support the diversity part of  neurodiversity.

I want to love the neurodiversity movement. I just don’t see it loving me back.

Before and After Stories: Time and Social Justice

What do narratives about trans* people, fat people, neurodiverse people, immigrants, and chronically ill people have in common? Yes they are all narratives about oppressed groups of people, but what sets these sorts of narratives apart from the narratives we hear about people of color or women? These stories almost always neatly fall into the narrative of before and after stories, with the before identity being the oppressed identity.

We rarely think about time in relation to social justice. Generally we view oppressed individuals as having characteristics or traits that don’t disappear with time. We may think about how these traits fit into categories, systems, treatment, prejudices, and the like, but we rarely think about how they change with time, or how the concepts of change and time are used as oppressive tools by majorities that wish these minorities to disappear. Oftentimes these stories are told as a journey with a movement from bad to good.  The acceptability of these minorities is often tied to time, and where they are in relation to a journey or a movement in time.

Recently I read an article on academia.edu that explored weight loss stories and how fat individuals have subverted the before and after weight loss narrative to empower themselves. In particular, “fat” is nearly always painted as the “before” and “thin” is the desirable “after” status. I was struck with this discussion, because this same narrative is often used in eating disordered stories wherein sick is before and recovered is after. This type of narrative is applied to many kinds of individuals, and could be an interesting lens with which to understand certain tools of oppression and new ways to empower oppressed people. Let’s start by looking at what is common across many of these narratives and how they are used to create binaries and enforce the view of society that certain halves of the binaries are acceptable.

One important thing that social justice advocates often talk about is that oppressed identities are often viewed as something that should change, generally in movement towards the “normal” or acceptable identity. When we speak of the identities I mentioned above, that identity is rarely viewed as the true identity of the individual, but rather it’s seen as a layer that needs to be shed to reach the “real” person underneath. You can see this for fat people in movies like Shallow Hal, or for people who are neurodiverse when you see narratives about the disease “possessing” someone, or that “functioning” is supposed to be the end goal. Oftentimes we don’t hear people tell stories of being this identity in the present tense: you don’t hear “I am anorexic and this is what it’s like” or “I am fat and this is what it’s like”. You hear “I was a teenage anorexic” or “my weight loss story” or even “here is my journey of transition from male to female, but now I am firmly female and no longer challenge the gender binary nuh uh”.

This use of the past tense does a great deal to undermine the experiences of these individuals, because it distances them from their experiences, and paints now as reality and the past as distant unreality. We are told that these experiences don’t persist through time: that it’s “just a phase”, or not enough of who we are to continue to be a part of who we are. Particularly when an individual does change, that process and the experience of change through time are often erased by creating a simple before and after picture that does not illuminate the complex and personal procedure of change. We get a sentence as simple as “I recovered” that erases the growth, the change, and the incorporation of the past into a new identity.

These are not always the stories that individuals with oppressed identities want to tell, but they’re the frameworks that society provides for us and appear to be the narratives that society wants to hear. They require us to give up ownership of parts of our lives, to distance ourselves from what we used to be and to look down on it as miserable or wrong. This means that the ability to claim full ownership of your entire life and to see positive and negative elements across time is a great privilege.

The other element of these narratives is that you’re considered fair game for judgment, pity, and condescension when you’re on the “before” end of the spectrum, and most people assume that you’re trying to reach the “after” end of the spectrum. They view you as unfinished until you change, then they see you as complete or acceptable. If you don’t want to change, you are often labelled lazy, wrong, stubborn or broken. It’s considered tragic if you never change. These views of individuals as simply on their way to something better completely erases the day in day out experiences of time, of change as a choice, or of narratives that don’t fit this pattern. The time that you were “before” is often considered lost, and you don’t get to claim it as your own. Relapse, or change back, is completely erased. These kinds of narratives, and the dominant societal interest in the before and after narrative take away many of our choices and remind us over and over again that we are so unacceptable that we are not even real until we have changed. Our experiences are changed from “lives” into “journeys” without our consent, and we are absolutely not allowed to be in between the two poles. These identities are only acceptable if they’re in the past.

So what do we do about these narratives? Are there ways  to rewrite our oppressed identities as things that persist through time, or to subvert some of the narratives? I think there are, but they require us to be extremely vigilant about when we talk about our lives and how we talk about our lives. It’s important for us to tell true stories about our lives at all points in time. When we have an eating disorder, we need to speak up about what it’s like. When we are fat, we need to speak up about what it’s like. When we are transitioning, we need to tell that story as the here and now. But we also need to remind ourselves over and over, and remind each other, that every iteration of us is the real us. You are always you and your experiences are always valid. There is no time when you are becoming yourself. You already are. When someone else tries to paint you as changing, in flux, or incomplete, fight back against that. Remind them that YOU ARE YOU right here and right now.

Stop using the past tense. Talk about now. And beyond that, ask for services and recognition in the here and now, not for the you that you will be. Ask for adequate medical services for yourself WHEN YOU ARE FAT. Ask for respect of your voice and your opinions, support of your struggles and confusions, and good relationships WHILE YOU ARE STILL STRUGGLING WITH YOUR MENTAL ILLNESS. Finally, find ways to rework the narratives. Use a frame that doesn’t have a clean ending. Make your oppressed identity the end rather than the beginning. Parody the narratives that exist a la Judith butler. Claim your identity right here and right now in any way you can.

Our identities are not a step on the path to acceptability. They are who we are. And ya know what? They’re pretty fucking awesome in the here and now. I have an eating disorder. That’s me. Get over it.

Empathy for the Neurotypical

Note: for the purposes of this post I’m using “neurotypical” in a more inclusive way than usual. Generally it’s used to contrast with Autism Spectrum Disorders. In this case I’m going to use it to refer to anyone without a diagnosis of a mental illness or disorder.

I have to admit something: I am not always a person who has a lot of sympathy for others. School comes easily to me, so when I hear someone say “I had to study for TEN HOURS for that test”, I have a hard time replying “That sounds horrible” instead of rolling my eyes and saying “Why the hell did you waste all that time? I didn’t study at all and I got an A.” I’ve spent a lot of time trying to teach myself the empathy required to understand that I’m highly privileged in that regard. But the area that’s actually the MOST difficult for me to be sympathetic is one in which I am highly underprivileged: depression, sadness, and difficult life situations.

One would think that with all my colorful and varied experiences of depression and mental illness, I would be the perfect person to talk to when you’re having a rough day. I’ve been there. I understand. I get that feeling. When I’m talking to someone else with mental illness, I”m fairly good at this (except when I can recognize stupid behaviors that I’ve done in the past like emotional manipulation or passive aggression or compliment fishing). But this week I had a neurotypical friend who is generally very happy and who has had a fairly easy emotional life get hit with something really hard and I’ve been trying my absolute best to be there for him. And I’ve found that my patience dwindles a lot more quickly than I would have expected.

Because here’s the thing: I have spent the last four years of my life spending the vast majority of my days in the emotional state that this friend is in. For the most part I’ve kept quiet about it to him and the majority of those in my life. I’ve worked and worked and worked to even survive to where I am right now. For the most part, my friends have been kind, but they haven’t particularly wanted to hear about how I hate myself. Getting through a week of depression is every week for me. And so when someone says they don’t know how they’ll survive because they’ve spent four days hurting I just want to scream back “THIS IS MY LIFE EVERY FUCKING DAY. EXCUSE ME IF I DON’T ROLL OVER AND ASK WHAT I CAN DO TO FIX YOUR WEEK.” I realize that it makes no sense to compare suffering. Just because my base level of suffering is higher and I’ve learned to handle it doesn’t mean that what my friend is feeling is any less of a major life crisis for him.

But when you see someone have their privilege taken away and they’re landed in the same boat you’re in all the time, it’s hard to work yourself up over it. So for those of us who do not have privilege and who spend all of our lives battling in a way that’s invisible to the privileged, we might have to practice empathy in a new way. We are totally familiar with these experiences and feelings. But we have to have the empathy of remembering or imagining what it’s like to experience them for the first time, to get hit with that wave of depression and anxiety without knowing what it is or whether it will end and how to get through it. We have to remember that we’ve built up skills and resistances, that we have had an education in emotional regulation simply by existing with our mental illness, and that those around us don’t necessarily have that education.

Very rarely do I suggest that the un-privileged take a lot of time out of their day to practice empathy towards the privileged. But when the privileged get knocked off their pedestal, they’re left in a place that those of us who live down here have never experienced, a place that’s scary and lonely and neither privileged nor un-privileged. It is often an eye-opening experience for those people, and if we can bring ourselves to see that they’re experiencing something we don’t have to experience every day, we can help them take some good lessons from that experience. Hopefully it can help us create a situation in which the neurotypical is left with a greater understanding of what it’s like to have a mental illness, and the neurodiverse person is left feeling like they have been compassionate and kind, and gained a stronger friend or ally from the experience, as well as helped stop a cycle of oppression.

And for the neurotypical among us, let me just say that your behavior towards your neurodiverse peeps when you’re doing ok can have a big impact on how much empathy they’re willing to have when you’re in a rough spot. If you never give them the benefit of empathy or of listening to their experiences or of accepting that their experience of the world is radically different from yours, they’re not likely to try to do the same for you. If you tell them they should just change their attitude, or that nothing’s really wrong and it’ll all be ok, or that you just don’t get why they’re unhappy or how they can be so introverted because it makes no sense, they’re not likely to spend the time understanding the nuance of your problems. Empathy goes both ways.

All of that said, no matter what the situation, taking care of self comes first (ESPECIALLY WHEN YOU HAVE A MENTAL ILLNESS). You don’t have to practice empathy at the expense of your own mental health. If you’re having a low spoons day and your friend is breaking down about not getting a job, you get to beg out of being the shoulder they cry on because you never have to give out of what you don’t have. If the difficulties your friend is experiencing and word-vomiting everywhere are triggering to you? You get to tell them to tone it down or stop.  Relationships are always about finding the balance between your own needs and the needs of the other.

Disability: Being Broken

Much of the time I feel broken. A fair amount of the time I don’t simply feel that way, I’m told that I’m that way. Not overtly, no, but in the way that people talk about mental illness, the way that people talk about people who don’t have good jobs straight out of college, in the way people talk about women who have experienced any sexual trauma…these things tell me that I’m broken. I once had a friend tell me that he could never be the parent of a disabled child because you would sink your whole life into them and they would still be subpar. As someone who has multiple birth defects and major mental illness, that fucked with me.

I’m told that I need to fix things about myself. I need to be less judgmental and more accepting. I need to stop reacting so quickly and harshly to things. I need to make my anxiety go away, and make my depression go away. I need to change how I feel about the world and myself, change how I perceive everything in order to be “happier”. I’m told that I need to change myself, fix myself, retrain my brain so that it’s different from what it is now and so that I behave differently in order to be whole and acceptable. I have been bribed and threatened by people who are well-meaning to get me into therapy to “fix” me.

And I now work in an autism program. And I hear the same kind of language. I’ve been reading blogs about autism and hearing about the ways that children are asked to ignore their own perceptions, feelings, and understandings so as to act in a way that is acceptable to others. I have begun to understand that in many ways, people to help those with autism still view autism as a disease that infects someone, a broken piece of their child that needs to be banished so they can have the real child back.

That’s how I feel when I talk about my eating disorder. People have literally told me to view the disorder as something separate from me, almost like it’s possessing me, like it’s broken and if I can just fight it away then I will be back and the disease will be gone. I’ve been broken or taken over by this bad thing, but if I could just get past it, throw it away, change it, then I would be normal and ok again.

Except that that’s not how mental illness or disability works. The way someone who is autistic views the world isn’t broken: it’s different. What is broken is the way that we treat those who see things differently or act differently. We expect them to move 99% of the way towards what we view as normal so that we can be comfortable, and then we make a 1% accommodation to adjust to them. We don’t allow that some people might be far more happy if they were allowed to act and think in a way that is radically different from the way we do.

As an example, I will always be more comfortable thinking in terms of my own safety and trying to avoid things that will be triggering for me: I will probably never be able to spend much time in a kitchen making food on my own. I will never cook for others. I will always feel more comfortable if others will simply accept what I say about my disorder and don’t question my experience. I will always feel more comfortable if I can move my hands when I’m anxious, or if I can twitch a body part when I have too much energy. Asking me to stop that doesn’t make my anxiety go away: it simply gives me no way to deal with it.

To take a more extreme example, for a lot of kids with autism, they have extreme sensory sensitivities. They can hear or feel things you or I never could. So they may never feel comfortable being in crowded or noisy places. And that doesn’t mean their broken. It doesn’t mean we should force them to deal with those situations. It means that we should accept what they can deal with, accept how they perceive as legitimate.

Instead of asking those of us who might perceive or experience the world differently from you to force ourselves into mental contortions so that we can look and act the way you might expect, maybe people should consider that we’re not broken. There is absolutely nothing broken about the fact that my brain likes to organize things A LOT, and thus it tends towards black and white thinking. There are useful elements to this and unhelpful elements to it. Telling me that it’s wrong will not make it go away, and even if I COULD stop acting in a black and white fashion it wouldn’t necessarily make me happier.

Making adjustments so that I can have time to think before jumping to black and white thinking, or encouraging me to rely on it in areas where categorization is useful but giving me some other tools to check it in my personal life: THOSE are helpful. They don’t try to fix me. They don’t tell me I’m broken or wrong in any way or that if I could just be more like other people or adjust my thoughts and my life everything would be ok. They do tell me that since I function differently than a lot of people I might need some help fitting myself and my perceptions into the larger scheme of things. Society is set up for the “norm”. It’s not set up for me. Which means I need some help getting myself to fit into the way society works. I need help functioning sometimes. But I can do that and still not give up the pieces of me that others view as broken. I can retain my mind and simply try to shape self and world to fit together.

Neurodivergence. We diverge from the norm. We’re not broken. We just fit differently. And it’s not all our job to make ourselves the right shape to fit into society, because sometimes we’re not that flexible. Sometimes society has to be flexible as well. I don’t want to feel broken anymore. I don’t want people to tell me I’m broken anymore. I have some more work to do to be able to function and to fit myself to society, but so do most people. I want that to be ok. I want it to be ok if I’m at a party and I say that I have to leave because it’s too noisy for me or because people are talking about diets. I want it to be ok if I show up to a party wearing fuzzy footie pajamas because I had a rough day and I need the sensory calming (see me up there in my onesie? That was the best party I’ve ever been to). There is nothing WRONG with these things. They don’t make me unhappy. What makes me unhappy is when people can’t accept that that’s how I cope. I am not a problem.