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

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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

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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

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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?