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

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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.

When Your Diagnosis Changes

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Today I received a diagnosis of autism spectrum disorder.

For those who have read a few of my writings, you’ll know that this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, EDNOS (anorexic type), major depressive disorder, and Borderline Personality Disorder traits. ASD was not even on my radar until the last few months, despite the fact that I’ve been through evaluations and in therapy and in the mental health system for nearly 5 years.

I have a lot of Feelings about getting a new diagnosis.

I feel some relief, because this was the first diagnosis that rang true to me, that I followed up on, that I sought out for myself, and that feels as if it might help to explain the things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis have felt like an external framework that I tried to fit myself to instead of something that emerged out of my own behavior.

I feel some worry, because I am not the typical image of autism. I am very far from the typical image of autism. I worry about my road going forward as a verbal, “high functioning”, female, activist autistic.

I feel confused because I still don’t feel like I can claim the identity autistic. What if it changes again? What if it’s not quite right? It doesn’t feel like an identity in the way many other autistics mention when they say it’s more their identity than their gender, or something that colors everything about the way they see and interact with the world. Perhaps this is because I haven’t noticed all the ways it affects me yet. Perhaps it’s just that I am really good at passing as NT. I don’t have a lot of the anger that many autistic advocates have and I can’t ever see myself having it. I don’t feel like I belong to that community.

I also feel something like regret. You see I’ve written openly about my past diagnoses in quite a few places. I’ve written about what it’s like to have BPD and how BPD affects me. But now I have the autism diagnosis. I feel a sort of fear/regret/worry that I have been lying or misleading people about what it’s like to have BPD. I worry that what at the time seemed like activism and honesty, telling people the truth of mental illness and giving others with BPD hope, turns out to have been a lie or a mistake all along.

But my ASD does not negate my BPD. I still have the BPD traits. Those still count. That honesty has paid off, because I have not hidden anything about myself or my feelings as they change and grow, which means that it’s all laid out there for others to see that those diagnoses weren’t quite right, and that this one fits and might offer some help and relief. I’ve also been honest about questioning my diagnoses in the past, and asked about connections between autism and BPD openly and often. I have never pretended that I am the complete expert on anything but my own experience. And I’ve been honest about the parts of BPD that didn’t quite make sense to me. So I suppose there’s a tinge of pride that I’ve been the only kind of advocate I know how (one who only focuses on me, myself and I JK lol kinda true though) and done it to the best of my abilities. With transparency and with a curious, open mind.

And of course I feel hope. I feel so hopeful that this might offer me some relief. That I might finally have some explanations for why everything seems so frustrating and overwhelming and impossible. That there might finally be some ways to stop the things that trigger excess anxiety before they happen. I can ask people straightforwardly what they’re feeling and why, or let them know with more clarity what I think and feel rather than trying to rely on my (shoddy) social skills and theory of mind to figure out who knows what.

And then there’s the added stress. Who do I disclose to? How? When? Obviously here I am disclosing to the world, but that’s very different from telling people at my work, who would not read my blog, or from telling my extended family, or from talking to my friends about what the diagnosis means for me. It’s a whole other piece of myself to start contemplating, and as you may have picked up at this point, I am really good at spending too much time contemplating myself and trying to understand the what and the why of my brain.

I feel a little bit frustrated. I have seen nearly a dozen therapists over the course of the last ten years. Some of them I’ve worked with for long periods, others briefly, but no one has ever said the word autism to me as a potential explanation for some of my behaviors and stresses. This diagnosis, which is probably the one that gives the most information to me about how to approach myself and the world, is the only one that I have ever had to learn about, research, discuss, and obtain for myself. I do feel proud that I was able to do that for myself, that I was able to recognize something about myself and have it externally validated, but I’m frustrated with the lack of education about how autism presents in women, because I am not entirely atypical in that regard. There is huge overlap between anorexia and autism in women. Someone should have been able to see it.

But also fuck my brain because who has BPD and autism? (lots of people. The answer is lots of people.)

So overall I’m hopeful. But the whole process once again reminds me of why I talk so openly about my mental health, because identifying and understanding these diagnoses is complicated and confusing, and it requires self advocacy. The reason I was capable of doing this was because I have researched and learned advocacy for the past three years on this topic. Not everyone is so lucky.

I’m Tired Of Curating

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I don’t want to be an advocate today.

Today I told my dietician in a session that I thought I was a little over my ideal body weight. She agreed with me.

I feel disgusting even typing that sentence.

Here are some things that are happening in my mind right now:

1. I miss the thin privilege I had when I was truly sick, the privilege to be taken seriously when I said I had eating problems.

2. Eating healthy doesn’t work. The only way I can lose weight is by serious restriction. When I eat normally, I gain weight. I’m not capable of eating normally. I don’t understand.

3. I hope I’m sick or something is wrong with me that means this weight gain is a fluke.

4. Having an eating disorder is easier than the “healthy” way of losing weight.

5. I’m not allowed to share these thoughts because they glorify an eating disorder, because I’m not actively telling people how awful it is to be sick, because I’m remembering how intertwined I am with the disease, the way it really is part of the way my mind works rather than something that needs to be kicked out of my life.

6. I’m hungry and I don’t want to eat. I’m tired and I will make myself exercise today.

7. I’m sick of trying to spin these thoughts into something useful or meaningful. Since I’ve started to write openly about treatment and recovery and mental illness, I feel as if I need to be a role model or someone that others can look to to see that mental illness does not destroy your life. And yet it’s consumed all of mine and I feel as if I’ve gained nothing except 50 pounds.

8. I don’t want to curate my words today. I don’t want to be careful not to trigger anyone or to mistakenly portray the ways I behave in a positive light. I want to be allowed the space to honestly portray my mental illness, including the way that it looks seductive when I’m anxious and overwhelmed. Right now restriction is the only thing that makes sense to me. I hate having to hedge that with the caveat that I know it’s not healthy and no other people shouldn’t do it and yes it will fuck up my life.

9. I’m so tired. I’m so, so tired.

10. As someone who has a mental illness and advocates for people with mental illnesses, sometimes I feel like I’m not actually allowed to have my mental illness. Sure, I get to talk about the experience and share inspiring stories or even stories about how nastybad it is and tips and tricks that I’ve picked up, but I don’t get to publicly have the thoughts and feelings that come with a jerkbrain. I don’t get to type “I think I’m a shitstain on the world” without people disregarding everything else I say. I don’t get to type “I truly would like to skip all upcoming meals indefinitely” without being accused of promoting unhealthy behaviors. Newsflash world: I have depression and an eating disorder. These are things that I think on the regular. If it’s too ugly to see it and you have to look away when I can’t be polished, then I don’t understand the point of my activism and advocacy. I don’t understand why I write anymore.

11. Sometimes I want to be sick. Lately the world has been making me want to be sick. Welcome to intersectionality.

12. I hope that part of activism can be honesty about the ways that mental illness is tempting and insatiable. I hope that it doesn’t look like I’m saying everyone should totally stop eating and get super depressed. What I am saying is that it’s so easy to want it when things are hard. “Fighting” seems like a foreign concept when something looks so calming and perfect and right. It’s less like a fight and more like a spell and some days the spell looks real nice.

13. I am reminded again and again and again that weight is a ridiculous criterion for an eating disorder. I am frustrated that the anxiety and stress and sadness and self hatred that just struggling with food causes aren’t seen as important enough for treatment, but that being over or underweight is. Of course physical health is important, but why bother if every day is a living hell?

14. I don’t know why this needs to be public except that I feel dishonest if I don’t admit that restriction still looks pretty good most days.

 

The Ways Depression Feels

Like someone has caught a fish hook in my chest and is pulling endlessly downwards. My flesh doesn’t rip, but it tugs and tugs and feels like drowning.

The tickling way my right arm starts to hurt when I’m holding in tears. Never the left. Always the right.

I’m aware of anything sharp enough to break skin. My eyes find those objects in any room, sometimes to avoid, sometimes to watch in a loving kind of visual caress. Sometimes my fingers find them too.

Exhaustion.

10 hours of sleep and exhaustion

12 hours of sleep and exhaustion

16 hours of sleep and exhaustion.

When my boyfriend tries to comfort me but his fingers start to feel like sandpaper on my skin as he rubs my arm. I can’t open my mouth to say stop. I’m afraid to say stop because I don’t want him to go away.

The changing color of my hair. Desperate bids to remind myself that I have control, at least over this.

Dripping snot into your bowl of ramen noodles because you can’t bring yourself to finish eating it and you feel incompetent that at 25 you still can’t feed yourself.

I can’t breathe, I can’t breathe, I can’t breathe.

Tattoo needles on my arms, when I start forgetting who I am and whether I am loved. I remind myself with permanence. I enjoy the pain.

Lips that are raw from biting.

Fingers that are raw from picking.

Have you ever felt fear for months/years/decades straight? I have.

Imposter syndrome for days.

My boss tells me that I shouldn’t continue to pursue a project I’m considering, sends me in a different direction. I spend the next three days fighting off the conviction that I’m about to become unemployed.

Sometimes, I see myself choosing emptiness. I wait in the next room and hope you’ll come to me and hug me and wipe my tears. I know that I could walk the few feet to you, or call out for you. But I wait. I don’t know why I wait. Eventually you come, but it’s always too late because I chose to wait.

I’m encased in ice, or in air, or in my body. Something that keeps you far away. My mouth doesn’t work and you ask me questions while I struggle to make my eyes blink or move. I describe everything in my room, silently, inside my head, to try to remember what existing in the world feels like. Or to remind myself that there is nothing here to hurt me.

My brain is always hurting me.

I’m Tired and So I’m Vulnerable

It seems like the hits just won’t stop coming. There’s been another shooting, this time a center that provided services for disabled individuals. I can’t even fathom what would possess someone to attack the most vulnerable people in our society, but I can’t fathom what would possess someone to shoot or kill another human being.

Each time it happens I get a little more tired. This week alone, there have been 3 shootings that I know of, all three related to things that I feel a personal connection to (one close to my home, one of a Planned Parenthood, and this latest, where people with autism receive services). They sap my energy to deal with my own life.

Brains only have so much capacity. Each little stressor that happens in your life makes you less capable of dealing with other things. Even if you manage to sort it out and get it swept off your plate, it still steals a few spoons. And of course, OF COURSE, the most vulnerable people in society are the ones who don’t have an excess of spoons to begin with. So it means the most vulnerable are the ones who get hit the hardest by acts of terror and violence.

I don’t have any raging thoughts anymore. I know what will happen next. The accusations of mental illness or the xenophobia. The way that white shooters are just sick. The way that anyone of color, or the disabled, whether they be victim or shooter, is seen as fundamentally wrong. I know what will happen and I feel numb.

What I have now is sadness, not just the sadness that of course we all carry for the people who are dead or injured and their families, but the sadness that comes from knowing that all the people who are already fighting the hardest battles every day just had their battles made that much harder. Because now they have the sadness and the shock to contend with. They have that much more fear infiltrating every day.

This is what terrorism is: it’s hearing the news and suddenly finding that you can’t quite function, that everything from a small criticism to the thought of cooking dinner leaves you broken and exhausted. It’s the way little tasks seem big. It’s the way your emotions are suddenly on hair triggers, so that one thing can send you spiraling.

I suppose it’s the fact that I don’t even know why I’m writing this because it seems ultimately pointless when I have such certain knowledge that there will be another shooting, if not tomorrow then next week, if not next week then this month. I have no confidence that we will make it to the end of this year without another attack.

I don’t know about other folks with depression, but that fact makes it intensely difficult for me to continue fighting my own little fights. Why bother? I don’t have hopeful words today. I have solidarity for people who are struggling, people who find that these things affect them more than others. I have guilt that I’m somehow making this huge tragedy about myself. I have the vulnerability that comes with all these little things adding up and just making me so, so tired.

I suppose what I have for you all today is validate that. Validate the fact that hearing about these things over and over, or even having a host of little problems, truly does add up. It truly does affect you. The science says it leaves you more vulnerable. Be gentle with yourselves.