I Am Lucky To Be Autistic. You Shouldn’t Have To Be.

Three years ago I knew almost nothing about autism. I didn’t know what sensory sensitivities were, what a meltdown was, or why a weighted blanket might be someone’s lifeline. I had been diagnosed with depression, anxiety, anorexia, and subclinical borderline personality disorder. I had been in therapy for almost seven years, including two intensive programs, multiple groups, individual therapy, and family therapy.

Three years ago I would have laughed if you told me I was autistic. No therapist had ever suggested the diagnosis to me. I’m highly emotional, not analytical. I’m overly sensitive, not someone with flat affect. I’m highly successful in school, I don’t struggle at all.

Here I am three years later with an autism diagnosis that makes sense of my life in a way that no prior diagnosis ever has. And I have to be honest; it was luck and privilege that got me this diagnosis. Not only that, it was luck and privilege combined with my own determination, curiosity, and NEED to understand myself that got me the diagnosis.

That is entirely unacceptable.

If you want to read the rest of this post, head over to the new site, Aut of Spoons.

 

Trauma is Not What Makes us Autistic

I’d like to start this post by noting that while I mention ABA and the controversy over ABA, I hope that folks don’t focus exclusively on that as the point of this post.

There’s something that’s been festering in the back of my mind for a long time, a discontent with the autistic self advocacy community, a feeling that I do not belong there and that I cannot relate to many of the concerns of other autistics. I’ve never been able to put my finger on why I don’t feel quite right before. Until just this moment, when I saw a title of a talk that posited Trauma is an essential part of Autistic Identity.

And there it was. There was what I was missing. The bullying, the ABA, the mockery…when I read posts from other self advocates or talk to them in person, I find that they focus in a big way on traumatic experiences, often experiences in which they felt deeply othered by parents, peers, or teachers. Their way of being was seen as bad, and that is what has led to their advocacy.

Now I want to be very clear: talking about histories of trauma is important. Recognizing shared traumas is important. However what concerns me is making trauma a marker of identity. Trauma is not what makes us autistic. It is not an intrinsic part of being autistic. Ideally it’s something that we wouldn’t have to live with. And I have seen it used as a gatekeeping mechanism that says “if you don’t claim trauma as part of your history, you don’t get to talk about autism. You don’t get to talk about ABA. You must let the Real Autistics talk.”

In other areas I’ve seen suffering become a way to gatekeep. You’re not really queer if you’re not oppressed. You’re not really black if you can pass. In the asexual community, there have been discussions of whether we “count” as queer/LGBTQ because we haven’t experienced the same oppression that gay, trans, lesbian, or bi folks have. I’ve had little patience for it in other places, and in this case I finally feel as if I’m part of the “insiders” and can speak up without speaking over.

Maybe I don’t have to say this, but it absolutely is damaging when someone gets cut out of a community because they haven’t experienced “enough” oppression. It reminds me of people with eating disorders who believe they don’t deserve help because they aren’t “sick enough”. Everyone deserves to feel as if they are part of a community, and even if compared to other people in your community you’ve had a relatively easy go of it, you still deserve the support of knowing you’re not alone. All autistics experience ableism. Whether we have had a history of abuse or not, we all need a place to go that is understanding and welcoming. We all need to be able to talk about our experiences.

But beyond damaging the people who get cut out of the community or told that they need to shut up about their experiences, I think it does a disservice to people who are entangling their basic identity with trauma. I say this as someone who has a very deep relationship with mental illness and trauma, someone who knows what it’s like to be massively affected by negative experiences, and to feel that my identity has been altered at a basic level by the negative experiences I’ve had. But I firmly believe that entangling your basic identity with trauma limits your potential to actually move on and grow. It limits your ability to add other elements to your identity.

That sounds abstract. But when I was in the very deepest parts of my mental illness I rarely thought of myself as anything but anorexic. If someone asked me who I was or what I did or about myself, my first thought was “anorexic”. It was the default identity I had, and when I wasn’t sure about something, I would typically take the perspective of anorexic to understand it. That limited my ability to assimilate new information, it meant that when things challenged a perspective forged in pain, I discarded that new information. If trauma is always at the forefront of your mind, that is the lens through which you view the world. You see everything as a threat. It often means that if someone disagrees with you, you label them immediately as “source of trauma”. That does a lot of damage to you because you don’t get to see new perspectives, hear new information, and grow. You’re completely stuck with your brain still processing trauma over and over again.

Now all of this isn’t to say “oh it’s super easy to stop existing in a place of trauma”. That shit takes hard work. But right now what I’m seeing is that “trauma” as an identity and a perspective is being glorified among autistic self advocates. And it’s sad to me, because that is where I see the root of a lot of anger, fear, and confusion. If you’re not a part of the autism community right now, you may not know that there is some serious beef between parents of autistic kids/providers/teachers and autistic adults. I think there’s good reason for some of this beef, but in many cases you end up with people who have the same goal yelling at each other and feeling attacked. I’m concerned that the mindset of trauma is leading to it.

For example, many autistic adults experienced abuse in the form of “treatment” in their childhood. ABA has been and often still is incredibly abusive. As a response to those experiences, some autistic adults now say that all neurotypical parents of autistic children are abusive and all ABA is abusive. Let’s focus particularly on the first one, because I think it’s a more obvious example of what I’m talking about. I think most of us can find easy counterexamples to the statement “all NT parents of autistic children are abusive”. That’s an all or nothing statement that allows for no nuance and not only is fairly aggressive, but also shuts down and silences experiences of autistics who lived a different life. It says that a few people’s trauma is the final word on an issue.

And it concerns me because I have seen folks use their history of trauma to tell other autistics to shut up and sit down. I have seen the community condone that behavior and focus almost exclusively on trauma in a way that says these all or nothing, black and white statements are not only ok, but they’re important and necessary. There is no attempt to move beyond the hurt that was experienced, but rather a valorizing of those who have experienced trauma and a deference to every word they say.

Just because you have an experience doesn’t mean it’s true for everyone. And just because you are autistic and have experienced trauma does not mean people are not allowed to disagree with you. There is nothing bold and brave about holding tight to your pain and ignoring all new information. And as autistics, we should do better. We should know that we need to work on nuanced thinking because we tend towards black and white. We should know that we can struggle with theory of mind, and so we should work particularly hard to understand experiences (especially those of other autistics) that are different from our own. And if another autistic comes forward and says “hey, this wasn’t abusive for me”, we shouldn’t accuse them of lying or ostracize them. We’re losing valuable information about the breadth of experiences within autism.

There is no benefit to holding up a bar that says “you must be this traumatized to enter autistic spaces”. We can and should do better.

Autism Speaks is No Longer Searching for a Cure: Here’s Why That Gives Me Hope

Note: This is my personal view. It does not represent the views of any organizations with which I am affiliated.

Autism Speaks, the largest charity organization associated with autism in the U.S., announced this week that they would no longer be seeking a cure for autism. For those outside of the autism community, many autistic self-advocates have long been decrying Speaks’ push to find a cure, saying that the money should be spent on actual services for actual people, and that the “cure” language says their lives are not worth living. Especially within the neurodiversity paradigm, autistics understand that their brains cannot simply be rid of autism and still exist as their brains. Autism in inextricably linked with many people’s identities. So speaking of a cure felt like an attack on their selfhood. It said that because autistic brains are different, they are bad and should be eradicated, despite the fact that many autistics were loudly saying they did not want to be changed, they wanted support, understanding, accessibility, and opportunities.

Speaks has made many, many, MANY other missteps. Their unending focus on parents rather than people who are actually autistic, this horrific ad, the lack of actually autistic people on their board or in high up positions in the organization, the language they used around autism (epidemic, burden, etc.). It all adds up to a big ol’ pile of shit, and I have yet to meet someone who is autistic who hasn’t just said “fuck Autism Speaks, I’m out.”

So this rolling back of the “cure” language is too little too late for most people I know. I understand. It is a pretty pathetic attempt to win back the people you supposedly serve. I know a lot of people who are saying it doesn’t actually much, and that there is still absolutely no way that they will support Autism Speaks (especially without any apologies for previous mistakes). I am completely sympathetic to this viewpoint, and I also am not particularly interested in supporting Speaks.

But what makes me hopeful about this is not actually Speaks. What makes me helpful is that there have been YEARS of self advocates pushing for this change, without much response. It took years before people outside the deep neurodiversity community began to notice and understand the problems with Autism Speaks. So it gives me hope that finally, FINALLY people are listening. FINALLY the voices of autistic people were loud enough that the largest autism organization in the country felt the need to change. It may be a nominal change, with little in the way of actual money being moved to helping people, but we were loud enough that they couldn’t ignore us any more. They felt that there was enough pressure that they HAD to do something.

What this says to me is that we are growing more organized and more powerful. People are starting to take note. We have found some of the correct channels to reach the people who are most misguided. I am hearing more and more rhetoric that recognizes the value of disabled and autistic people.

It’s a baby step. It does not fix the past harms. We still have such a long way to go before people have the services, respect, and fulfilled lives that they deserve. But I see it as confirmation that we, the self-advocates, are doing what we should. I see it as a big old gold star that says “keep on keeping on. Change is possible.”

I want all of us to stop and recognize that for ourselves. We did this. It is small, but Speaks is fucking huge, and we made them budge. Oftentimes that first movement is the hardest. We can do this.

Neurodiversity and the Naturalistic Fallacy

I’m pretty much one of the biggest fans of the ideas of the neurodiversity movement out there. Brains are different and we can deal with that? Great! All people deserve accommodations and human rights? Awesome!

For some reason this is something that gets peoples’ goats. I’ve been trying to figure out what exactly it is that pisses people off about the neurodiversity movement, and I think I’ve figured out at least some of it. One of the basic tenets of neurodiversity that a lot of people get hung up on is the sentence “Autism/ADHD/learning disabilities/mental illness is a natural human variation.”

There’s no question that autism or mental illness or ADHD or learning disabilities are human variations. That’s pretty damn obvious. Are they natural? Well most likely. Mental illnesses have existed for as far back as we have records, and few people want to argue that they’ve just been created by some sort of unnatural means. Some people will say that autism is unnatural because of vaccines, but honestly fuck those people. They have no evidence. Some people seem to think that in order to be “natural” something has to be caused by genes with no influence from the world, but that actually makes no sense at all. For the most part I also haven’t seen very many people argue these things either. They recognize that a mix of genes and environment cause variations in human brains.

The problem is that a lot of people buy into naturalistic fallacy, or the idea that if something is natural, then that’s the way it’s supposed to be. Some people within the neurodiversity movement believe this, and that’s why they think neurodivergent people deserve rights. That’s not really the majority view of the movement though, and it’s not the one I’ve seen articulated by most organizations. But there are also people outside the movement who buy into the fallacy, and those people are causing a lot of confusion.

See here’s the thing: if you buy into the naturalistic fallacy, then the fact that autism or mental illness come with negative elements means that they can’t be natural. I’ve seen people argue against neurodiversity by saying “I’m autistic and sometimes my autism makes my life hard in x, y, and z ways.” Oddly enough that doesn’t actually address the claims of neurodiversity, but if you believe “it’s bad” means “it can’t be natural” then you think it does. For some reason when advocates say “autism is a natural human variation” people hear “that means that it’s great, requires no treatment, and comes with no downsides!”

There are actual arguments that happen between neurodiversity advocates and those who advocate a more medical conception of neurodivergence. These are good arguments to have. There is a wide variety of quality of life for those who are neurodivergent, and we need to talk about whether embracing neurodiversity will really improve life for the whole spectrum of people. We need to talk about specifics of which therapies and treatments are a problem and why, versus which really do provide an individual with more tools to live the life they want. But what we really can be done with please, is the debate about whether there are downsides to neurodivergence.

We all know there are. It’s all anyone talks about. When we say that neurodiversity is natural, we’re not arguing against that. When we bring up the benefits of variations, we’re trying to balance out a conversation previously dominated by the inabilities of neurodiverse people. I’m so sick of arguments that fundamentally misunderstand and straw man the arguments of the neurodiversity movement. I have never actually seen an argument against neurodiversity that disputes that basic tenet, even when people are saying they are. So please: look up the naturalistic fallacy and come back when you have an actual criticism of neurodiversity.

Awareness vs. Acceptance: We Do Need Both

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

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?