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.

Awareness vs. Acceptance: We Do Need Both

Olivia holding a fidget, wearing large red glasses and a green floral dress

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?

How the Push for More Inclusive Organizations Forces People to Out Themselves

Disability advocacy is one of the places where I often feel real torn. The place where I see this most is in the push for organizations that represent disabled people to employ disabled people. “Nothing about us without us,” is the battle cry. I would like to yell along. I would like to make that push along with people.

But as I’m realizing from my personal experience, it’s far more complicated than just hiring more disabled people. It’s about marketing and it’s about disclosure. Here’s a question for you: do you know how many people with disabilities work at your place of employment? Are those numbers available to anyone? The answer is most likely no, because of the nature of disability. It’s often invisible, it’s often stigmatized, and it’s often personal. So many if not most people do not disclose, especially if they have an invisible illness. Sure, there are some disabilities that are pretty obvious, like if someone is visually impaired or mobility impaired, but even then, they are under no obligation to disclose exactly what their disability is.

Let’s use my life as an example. I work at an autism organization. I have not disclosed my autism diagnosis to my coworkers, because there’s really no particular reason for me to do so. I don’t need accommodations at this job that I can’t create for myself with relative ease. I know of at least one other person in our organization who is on the spectrum but does not discuss their diagnosis or personal life publicly. We do not highlight either of us in our marketing because it would be wholly inappropriate for us to blast the personal lives of our employees. Neither of us is comfortable being out and talking about our experiences with our coworkers. For reference, we are an organization of less than 20 individuals.

My workplace has been criticized for not hiring autistic people. An organization that is over 10% autistics is criticized for not having enough autistic voices. Don’t give me BS about only autistics working at autistic organizations, that isn’t feasible or practical, and 10% is much higher than the proportion of autistics in the general population.

This means that those of us who are on the spectrum have a choice: disclose or have our voices and contributions erased.

Suddenly we are required to disclose our disability or be criticized for speaking over the voices of other disabled people. That’s a really shitty position to put someone in. Now look, I understand. If people aren’t open about their identities it’s really hard to advocate for their rights. Coming out is incredibly important for many movements for lots of reasons. But we can’t punish the people who are afraid to come out. This is why I have an issue with saying that only disabled people can speak about disability: you don’t know who is or isn’t disabled and no one is under any obligation to disclose to you. You cannot be the police of who gets to speak about disability because then you are the police of who has disabilities. That is not something that I am willing to accept.

With all of that said, it is important to continue to push for organizations that focus on disabilities to include people with those disabilities, and most especially to hire people with disabilities. Yes, this does put us in a bit of a bind: how can we hold people accountable if we have no way to get accurate numbers? How can you make improvements if you can’t really accurately identify who has a problem?

Ha, you thought I had good answers. I don’t. Unfortunately one of the most integral parts of improving life for people with disabilities is decreasing stigma, so that coming out isn’t as fraught or scary of a process. And part of that process is having visible, out members of society doing the things we consider normal. Welcome to the Catch 22 of activism.

So I suppose if there’s one thing I want from this post it’s for people to be aware that criticizing organizations for not including individuals with disabilities is not always as perfect of a solution as it might seem. You might be telling someone with a disability that they don’t count or that they have to prove their disability in some fashion. You may still choose to make the criticism, but please do not erase those who aren’t out. Note that there may be people with undisclosed disabilities, and be open to hearing that there is someone on the spectrum or with a disability that you didn’t know about.

The hardest thing to recognize is that there are virtually no actions that don’t harm anyone. So when we are engaging in activism, we need to be aware and self critical.

Featured image by Caitlin Tobias.

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.

Neurotypicality Is Not the Goal

Disclaimer: the person and tense in which I write in this post change throughout because I found myself fairly distressed trying to figure out who I was speaking to. Basically if you’re anyone who has any influence over someone who is neurodivergent and their treatment, pay attention.

Earlier this week I posted about some of the downfalls of ABA and was rightly called out on the fact that I forgot to include one that is incredibly important: ABA often pushes autistic people to behave more “normally” just for the sake of being less autistic.

This is a larger issue than just the autistic community. This affects everyone who is neurodivergent or mentally ill in any way. Because while the goal of therapy is ostensibly to help people live content and healthy lives, many therapists often forget that what they perceive as “good” or “happy” isn’t necessarily what their clients want. That means that acting neurotypical often becomes the goal. This is especially true for kids or other populations that can’t easily advocate for themselves, like people who are nonverbal.

Think for a second about treatment for people with autism. This is one of the easiest examples to use, because many “autistic” behaviors are very visual and obvious, but don’t do any harm to anyone. That includes things like hand flapping, spinning, or rocking. Many treatment plans include a goal to decrease these behaviors. Why?

Well there might be a few reasons. If someone is in school it’s true that these things can be distracting to other students. But NOT doing them is distracting to the student with autism. So why do neurotypical needs get prioritized over neurodiverse ones? And some stims aren’t even distracting but are still seen as bad because they make the person look different.

There should be one guiding principle in all treatment: has my client communicated that this behavior is something that makes their life worse? VERY occasionally this comes with the addendum that if a client can’t see that something is harming them you still might need to try to get rid of the behavior, but I can only see that applying in physically dangerous cases like self harm, extreme caloric restriction, purging, drugs, etc.

But the point of therapy isn’t to “cure” people. It’s to make them healthy. Healthy is not the same as normal, and often doesn’t mean living without any kind of mental differences. Healthy means that you can live your life in the manner you like and mostly achieve your goals. It means your life is the way you would like it to be, at least in the really big ways. Most if not all people who deal with any serious neurodivergence do that while also continuing to live with their neurodivergences, because a brain that is wired for anxiety or depression or OCD or a personality disorder doesn’t stop being wired that way. At best a person can hide it.

Hiding the way your brain works and trying to behave in ways that are counter to the way your brain works is painful and unpleasant. So again, let’s go back to the goal. WHY do you want to change a behavior? Is it because differences make you uncomfortable? Is it because you think that it must make the person unhappy? Is it because you think it’s making their life more difficult?

I have two words for you: communication and consent. I think many treatment programs forget to communicate with the client. Because that communication can help you find out why someone is doing something. What purpose does it serve? Do they like it? If so, leave it alone. If not, you still need to help them find a way to serve the same purpose. And if your client doesn’t want to change something then you don’t get to decide for them. Just because someone is neurodivergent or mentally ill does not mean that they cannot make their own choices, or that they don’t have preferences, or that they can’t tell you what upsets them and what doesn’t. Your perception of better or worse is irrelevant.

Being “normal” does not necessarily mean better. What is important is making sure that people are doing things that make them happy, that aren’t held back by their brains, that they aren’t hurting. It’s to give people the best life possible, which does not mean the most neurotypical life possible. It means a life that makes THEM happy.

Now of course for some people sticking out is unpleasant, and if they don’t like being different then by all means it’s no problem for their treatment goals to include looking more normal. But consent is the basis for all of this. Do not try to change someone’s brain without their consent. That’s called manipulation and it’s abusive and cruel and unnecessary.

The end goal isn’t neurotypicality. It’s happiness and fulfillment. It’s a life that someone with neurodivergence likes. What providers miss when they prioritize neurotypicality is that they might be actively hurting someone finds it easier to behave in a different way. If you need to stim and you can’t, it’s uncomfortable and sometimes painful. If you have extreme anxiety and socializing outside of your social circle is intensely anxiety provoking, it makes sense that you’ll want a small, close group of long term friends instead. If those people are forced to behave like “normal” people, they will be less happy and less capable of functioning.

This is why providers need to learn to ask questions more often: what do you want? Why? And then they need to learn to give their clients the time and space to give informed consent to their treatment. Even people who are non verbal. Even people you assume can’t understand. They still deserve the basic respect of having their desires for their life heard. Always. And your assumptions about what makes them happy are not more important than what they actually want, even if that means they’ll look autistic or anxious or delusional for the rest of their lives.

Some Problems With ABA And The Way We Talk About Autistics

Disclaimer: a content warning for nonconsensual treatment. This post represents my views alone and not those of my employer. I am not autistic, but as someone working for an autism organization I am striving to listen to their voices.

As part of working in the autism world, I’ve been spending time reading and learning about various therapies used to treat autism. There is quite a bit of controversy in the autism world about just about everything, but one of the most controversial therapies is called Applied Behavioral Therapy. It is an evidence based therapy that is considered the gold standard by many treatment providers. It is also considered abusive by many people who actually are autistic.

After spending a class delving in depth into ABA, I understand many of the criticisms that autistics bring to the table, and I want to signal boost some of the problems that I saw in the class, things that apply to many of the ways we talk and think about autistics in general, and things that seem as if they could easily be remedied in order to access the positive elements of ABA (because there are some elements of the therapy that rest on solid and respectful principles).

Let’s start with that. The underlying principles of ABA as they have been explained to me rest on the idea that every behavior has a function, and if you believe that a behavior is not helpful to someone, you have to give them another way to fulfill that same function. This seems like a really good principle. If someone is engaging in self injurious behavior, or their life is being impacted by their behavior negatively (they can’t socialize but they’d like to, they can’t get out of the house, they’re having a hard time getting a job and would like one), it makes sense to help them change that behavior. But it’s also incredibly important to make sure the person isn’t left without their coping mechanisms entirely and has support to fulfill their emotional, physical, and social needs.

Unfortunately that principle appears to get lost really often.

What also gets lost is that any time someone is being treated for anything they need to be an active part of their treatment. Whether they are verbal or not, “high functioning” or not, they need to have some way to communicate their consent and acceptance of the treatment. I actually heard an ABA practitioner say that you might be working with people who “aren’t capable of consenting.” I don’t think it’s possible for me to state NO to this sentiment strongly enough. Consent is not something that is exclusively verbal. It happens in all kinds of ways. It is very, very obvious when non verbal folks don’t consent to treatment, and if you think you’re allowed to continue a treatment after your client has had a meltdown, started crying, started screaming, tried to run away, or tried to hurt you, then you clearly have no respect for the way that your client is withdrawing consent.

What really frustrates me about ABA is that it doesn’t seem to consider the person whose behavior is being modified an equal and active participant, nor does it recognize that they are the expert on their mind and life. It doesn’t take advantage of their knowledge base and attempts to bypass that really important source of information in the process.

In one class that I was in, the presenter spent three hours discussing ABA and behaviors, and only at the end of the session did they mention you could ask someone what they were trying to communicate with their behavior or what they might want to do. One story they told included the fact that they had never just simply asked their client to change the behavior, and instead had tried to motivate the person in all sorts of behavioral ways without making it clear to the person what they wanted and why.

Even when we are talking about behaviors, we have to remember that a part of human behavior is communication. Sometimes that is verbal and sometimes it comes in the form of behavior, but we can communicate with other human beings. Writing off the importance of that communication for helping us understand the behaviors of autistics is a way to continue othering people who are neurodivergent, and for us to ignore what they want and need.

This leads me into the next point: people with autism are people. Just like any other person, they will have preferences. Sometimes there isn’t any deep, important, mental illness scarred reason for liking one way over another. If you get preferences so do they. That means when they tell you “I don’t like this,” you respect their preferences. Unless there is a serious reason that their preference needs to be overruled (e.g. they will only ever eat pizza and it is causing a serious health concern), then there’s no reason to ignore their preferences. Don’t tell me you can’t tell if they’re communicating preferences to you. You know what non verbal communication looks like. You can figure it out. People with autism communicate and it’s not something to be ignored.

What really gets my goat about the way neurotypicals talk about people with autism is that they act as if someone with autism would never have preferences about their treatment, or about the things they find helpful or not helpful. There always has to be some underlying REASON, like “I’m not a visual thinker” or “I had a bad experience with it,” instead of it simply not resonating. One example that I heard of this was when someone asked why one person might not like the 5 point scale, or why it might not work for them when it worked for someone else. The instructor’s response was that they might have had a bad experience with it in the past.

Think about that. If two people are taught the same skill in school and one of them finds it helpful and the other doesn’t, do we assume that it’s because one of them had a bad history with it? No. We probably assume that people are different and sometimes one method of learning is helpful to one person but not helpful to another person. It doesn’t mean there’s something wrong with the method or with the person, just that they don’t mesh.

People with autism get preferences. Most especially they get preferences when it comes to their treatment. It is really hard for me to fathom how a treatment system that rests on the concept of reinforcing positive behaviors does not focus at all on communicating with the individual to understand their preferences, desires, and aims. How can you use positive reinforcement if you don’t know what the person wants?

At this point I don’t know if ABA can fix the problems that so many autistics have talked about, or escape the allegations of abuse. What I do know is that for treatment of autism to move forward in a positive way it has to do so with the full consent of the people getting the treatment. If that means our first priority is researching how to community, then so be it. Autistics already have ways of communicating. As providers are so fond of saying, every behavior is communication. Why are we so bad at listening then?

ETA: Thanks to Benny Vimes for pointing out that another huge problem with ABA is that it’s often used to push autistics to behave in less autistic fashions, e.g. making eye contact or reducing hand flapping. I will probably write further about this in another post, but hand in hand with the idea of consent is the idea that there needs to be a reason to treat someone. There is NO reason to change a behavior if the person who is doing it doesn’t want to change, unless they are actually literally hurting themselves right now. There is NO reason to force allisticness on someone who doesn’t want it.