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.

Weekly Action Scripts February 7

Welcome to your weekly scripts! Last time I gave scripts for calling and tweeting elected officials about various issues related to disabilities. This week let’s talk immigration. This one will not be quite as long as last week’s as there aren’t quite as many issues immediately on the table right now, but I promise there will be more.

The biggest issue on the table at the moment is the travel ban that came through an executive order from President Trump. There’s not a whole lot that legislators can do about this one, as it’s an executive order, but this is a good time to bombard Trump’s social media and phone lines to make it as clear as possible that we do not condone an act that seems to be motivated by blatant racism and fearmongering.

In my previous post I outlined the best ways to contact the White House, as the comment line is no longer open. Make sure you check that out if you’re planning to make calls. Here are some basic scripts for contacting President Trump to urge him to end this ban.

Twitter: @realDonaldTrump your immigration ban does nothing to improve safety and hurts people who need help. END IT.

Phone call script:

Hello, I am calling in regards to the travel ban that President Trump has put on people from seven Middle Eastern countries. I am calling because as an American citizen, I believe that this ban is inappropriate, cruel, and not in the best interests of the American people. Immigrants already go through a heavy screening process, and it is inappropriate to leave refugees with nowhere to go. This ban does not make America any safer, but it has broken apart families, left many people in confusion about whether it affects them, and sent a clear message that America is not friendly to people of different nationalities and religions. I urge President Trump to reverse the ban. Thank you.

The second issue I’d recommend making yourself heard on is the wall on the Mexican border (it feels like a goddamn post apocalyptic caricature to even type that).

Twitter: @realdonaldtrump Mexico will not pay for a wall. Immigrants should be welcome in America, and this wall puts people in real danger. NO WALL.

Phone call script:

Hello, I am calling in regards to President Trump’s proposal to build a wall on the Mexican border. I am calling to urge President Trump to reconsider, as this will be exorbitantly expensive, ineffective, and does not represent the attitudes of the American people. We should welcome those who come to us for a better life. Please do not move forward with this wall. Thank you.

As always, feel free to adjust these scripts to suit your needs. I had a friend turn last week’s into postcards, which was fantastic! If you have a particular issue you’d like some scripts for, let me know in comments. Thanks all!

Of Course I Want Donald Trump to Fail

This image has been floating around my Facebook feed for a couple of days now and I’m getting to a point where I need to rant about how inaccurate this metaphor is. It’s easy to feel clever when you stumble upon a metaphor that you think explains a situation, but if there are major and important discrepancies between the metaphor and the real situation, all you’re doing is confusing things.

“But this is an apt metaphor!” you might say. Well no, it’s not. Obviously no metaphor is perfect, but there are a couple pertinent areas where this one does not map accurately onto reality. There are two that seem highly important to me.

The first is that this metaphor implies that if we fail, Trump fails and vice versa. A pilot has a vested interest in landing a plane safely because if it crashes then they will die too. But here’s the problem: TRUMP IS NOT ON THE PLANE WITH US. If we (America, the American people, minorities) get fucked over, crash and burn, and die, Trump does not. He’s got a little golden parachute or an escape pod or maybe he’s just on a totally different plane. Our dear president has the money and resources to survive whatever he might do to the plane (our country). This is actually true of MOST presidents, although Trump is wealthier than most and appears to have this uncanny knack of just suing everyone who suggests he might have failed. But it is absolutely possible for a president to “crash” the country while remaining 100% safe and fine themselves. That’s one of the reasons that people are concerned with the perceived temperament of a president: he does not have a personal motivation to keep the plane in the air, so we want someone empathetic enough to care about those of us who will die if it crashes.

But the other, perhaps MORE relevant concern is that Trump’s stated goal is a goal that involves either kicking a lot of minorities off the plane to their death, or just nose diving the plane into the ground, depending on how many of his stated goals you believe he actually wants to put into action. This is where the metaphor truly breaks down.

Yes, I do want Trump to fail. I want him to fail because if he does what he wants to do, our flight will crash and burn. Honestly, I think the more apt metaphor is that America is in one plane with Trump and his cronies in another plane and they’re shooting at us. I would really really like them to fail. Not because I’m willing to fuck over America in order to see a politician that I dislike fail, but rather because from the perspective of the people who are protesting, writing letters, afraid, etc. Trump succeeding means that we lose. We lose our health care, our marriages, our legal gender identities, our access to abortion and birth control, our freedom of speech, our ability to freely enter and exit the country, our access to college, our good public education…in some cases we may even lose our lives. I would like him not to succeed at hurting me and all the people I love.

It all depends on what you mean by “succeed” and “fail”. If by succeed you mean “is a good president who doesn’t start WWIII, doesn’t follow through on any of his campaign promises, and generally doesn’t do anything”  then yeah, I’m for it. But if by succeed you mean “gets a fraction of the legislation that he promised through Congress” then no. I do not want him to succeed. Because I think that would make him an awful president, and would fuck over our country.

There’s nothing unpatriotic, selfish, or petty about hoping that someone does not accomplish a goal that you think is awful.

2017 Was a Year of Mourning

It’s the new year! Hey 2017. Good to see you.

I have a lot of friends who are not fans of 2016. I agree with them on many fronts about the dumpster fire of the last year. 2016 was objectively one of the hardest years I have ever had on a personal level. There was simply too much happening. Some of it was amazing, but some of it was truly horrible, and I cannot really process it all. For some people, 2016 was awful because of the election and celebrity deaths and large, communal events, things that didn’t appear to affect them personally but which they’ve reacted to anyway. Let’s talk about that. Let’s talk about what it’s like to have group experience that affect your perception of the world and the people around you.

I have seen some people shitting all over the idea that someone should be sad at the deaths of celebrities or at the election of Trump. These things don’t make an immediate impact. Other celebrities will die. Trump isn’t even president yet. 2017 will be worse. Just wait until their policies get enacted. Don’t complain, act! That’s not the RIGHT way to react to horrible things. 

I am not inclined to be particularly forgiving to anyone telling another person how to feel, but in this case, I think that naysayers have missed a major part of WHY others are reacting in the ways that they are and so I am particularly annoyed. One of the most common refrains that I’ve heard amounts to “get over it. It will just get worse so you need to toughen up and figure out how to deal with it.”

I have news for those naysayers: this communal outcry? The complaining, the jokes, the GIFs of a dumpster fire? That IS us getting used to it. It’s called grief and it’s a process, and 2016 was a year that was all about realizing that loss and cruelty are a part of our lives, then grieving for the reality we thought we knew. Grief happens in all kinds of ways. It’s not always rational, it’s not always clear, but it is necessary emotional work, and it will take time. People have to feel these emotions before they can move on to creating positive change.

I particularly want to focus on a brand of criticism that I’ve found frustrating and harmful. After Trump’s election a lot of people had a lot of feelings. Many people acted on those feelings in ways that made themselves feel more safe, or because they wanted to feel sure they would have birth control/be married/be able to get citizenship/whatever else they were worried about before Trump could make any changes. I have friends who moved up their wedding dates, people who invested in long term birth control, acquaintances who suddenly started volunteering and giving money at high levels. People are making changes. To some, this might appear rash. Trump isn’t going to take away marriage equality tomorrow, why are you having your wedding right now?

It’s true that in the sense of practical action, some of people’s behaviors aren’t necessary. People probably don’t need to worry about their healthcare disappearing the moment Trump gets sworn in, or about their marriages being annulled in a few weeks. Some of these behaviors might even be a little bit irrational in the strictest sense. I don’t really want to get in to a discussion of “how scared should people be”, because honestly it doesn’t even matter. These actions are serving a very important purpose that is completely separate from their existence as political actions.

People are doing things because they are sad and afraid. A world that they thought had existed is gone. They are mourning the loss of that world and the illusion of safety it had provided. Sometimes, when you are mourning, it is perfectly reasonable to do things just to make yourself feel better. You get to act irrationally, especially if it’s not hurting anyone and it makes you feel safer. You get to focus on yourself for a little bit.

When you understand people’s behaviors not necessarily as calculated political action but rather as personal grief, it makes a lot more sense, and hopefully can give us all a lot more patience with each other. Maybe things will stay as awful in 2017 as they felt in 2016. That’s certainly a possibility. But what I doubt will stay the same is the way people are behaving. Human beings require time to adjust to change, particularly unpleasant and difficult changes. 2016 was a year of realization for many people: the world is not what I thought it was. People are not who I thought they were. Death is a regular part of my life. Suffering cannot always be avoided.

2016 was a year of mourning those realizations and the loss of some hope and security that came from not believing those things. As we move into 2017, I hope we can start to grow from mourning to action. But I also want to recognize the people who are still coping, or still struggling to cope. Emotions move at their own pace. People feel and understand emotions differently from each other. None of us should be heaping shame and guilt on each other for the feelings we have about 2016.

I want to publicly witness your mourning. I want you to know that it’s ok. I want you to know that the fear and grief make sense. I want you to know that you aren’t alone. I want to recognize that there are moments in which communities collectively see and understand change, and that this isn’t just the same as usual, and maybe this is our new normal, but we take time to adjust to normal. It’s ok to feel like 2016 was a big and important year. Recognize those feelings. It’s the only way to move forward, and the only way to truly adjust to the world as it is. There’s no call for shaming each other.

5 Ways You Can Be An Ally to Minorities Right Now

Donald Trump is going to be our president. Ick. Unfortunately, as we’re seeing from many of his cabinet picks, this appears to be bad news for minorities and oppressed groups. We’ve already seen a huge uptick in harassment, particularly of the racist, homophobic, and sexist varieties. If you are white, particularly white and cis, and most particularly white, cis, and male (and straight, able-bodied, ya know), now is the time to put your money where your mouth is and actually do something to help protect the vulnerable people around you.

It might seem overwhelming, and you may have no idea where to start. That’s ok. I have some ideas for you! Minorities cannot survive this presidency alone. It is the responsibility of those with privilege to do the work. So let’s get moving.

1. Donate. Yes, I know, it’s a pain and it doesn’t feel like you’re doing much, but I promise that setting up a monthly recurring donation to an organization like Southern Poverty Law Center or RAINN or Planned Parenthood does make a difference. If you have the financial resources to commit $20 a month to an organization that is working to protect minorities, then you damn well better be doing it. Here’s a list of some good options if you’re feeling stuck on finding an organization.
2. Reach out. I know that as white people and men we aren’t used to doing a whole lot of emotional labor, especially not the emotional labor of educating ourselves, supporting our minority friends, and looking racism straight in the face. We have to be willing to do that right now, because I can promise you that the people who feel threatened right now have zero emotional resources left to do that. For many people, this election is a grieving process. Your job is to give your oppressed friends all of their spoons to do the grieving. Make a list of all the women, people of color, queer people, disabled people, etc. that you know, and get in touch with all of them. Yes, all of them. Even the ones you don’t know very well. Ask them how they’re feeling and if there’s anything you can do to help. Make suggestions. I have multiple friends who are having a hard time feeding themselves right now, so I’m bringing over pre-cooked meals. I have some friends who just needed to vent and talk. Keep this list somewhere handy, and in another month or two months, or at the inauguration, or after any shitty policy announcements, reach out again. We can’t afford to be reactive right now, we have to be proactive.
3. Volunteer. There are approximately a bajillion organizations out there that would love some help. The best part is no matter what your interest there is probably an organization that is specifically focused on it. You could do clinic escorting at Planned Parenthood, work with Black Lives Matter organizing protests and rallies, or pretty much anything else on the planet. One thing to consider is what skills you have. Are you a lawyer? Do you know social media? Are you an accountant? Volunteer your learned skills as well as for untrained work. Most nonprofits would adore someone who can do a little bit of pro bono professional work for them.
4. Call your representative. This one is incredibly hard for me due to phone phobia, so I will likely write an email instead, but most people are 100% capable of doing it, and it’s not that hard. Take 5 or 10 minutes, call your representative with specific policy issues that Trump is proposing that will harm minorities and specific action items you would like your representative to take. Currently a great option is to oppose his choice of Stephen Bannon as Chief Strategist.
5. Go to a rally. Join a march. Take direct action. If you are able bodied and can get to the location, you should be out in the streets, showing solidarity. I am making it a goal of mine for 2017 to attend one march or rally each month. They’re out there, and you can seek them out through organizations like Black Lives Matter, NAACP, or a local organization that’s important to you. Get out there and show that you are willing to act on your values.

Is Self-Care Part of the Capitalist Machine?

Self care is really important to me, so when someone passed along an article entitled “Why I Don’t Believe in ‘Self Care’ (and how to make it obsolete)“, I was intrigued. I like a good critique of something that I care about, especially if it makes me consider things in a different way. The intriguing thing about this critique is that it appears to be based in Marxism, which i’m mostly going to ignore because I don’t want to argue against all of Marxism, but suffice it to say that buying things ever is not inherently evil. That said, there are some interesting things to consider about the critique.

According to the article, self care means “any necessary human regulatory function which is under individual control, deliberate and self-initiated….In modern medicine, preventive medicine aligns most closely with self care.” The author pulls this definition from Wikipedia, and goes on to talk about the fact that we call many things self care that don’t fall under this definition. In the author’s mind that’s a problem, because we confuse things that are necessary and under our own control with things that we do to cope temporarily with bad situations.

There’s a lot to unpack here, but the first thing I want to point out is that hinging your entire argument on a Wikipedia definition of a word is not a strong case. Words are defined by how we use them, so if everyone around you is using the phrase self care to mean “taking care of yourself, doing things that feel fulfilling, checking in with yourself to engage in practices that keep you going”, then that’s probably what the phrase means, rather than something very strictly defined as “under your own control.” In fact, if I were to ask 100 of my closest friends what they think self care means, I doubt a single one of them would include the self initiated and under individual control elements, but those appear to be huge parts of the author’s argument.

I have a huge problem with folks who profess to be intersectional, but take strong prescriptivist positions on language. That shit is racist and classist, and if you don’t understand that we have to look at how language actually functions in real life, then I really don’t have time for you. So let’s just take a moment to find irony in the fact that an author who is arguing against the problems of capitalism and the abuses of the oppressed classes relying on prescriptivist arguments for their article.

But to move on to the main argument of the post, the author wants to distinguish between coping, which is a temporary strategy to get through a hard time, and self care, which is the ongoing actions you take to ensure your well being. I think there’s an important nugget of truth to be found in this article: there are some things that we do that feel nice in the moment but are not sound long term strategies. I think it’s important to recognize the fact that often self-care will put us at odds with other people, and that we need to be aware of how our self care affects others. I’ve seen people say that self care is eating a whole pizza and binge watching Netflix. That might be self care in this moment, but it is not going to be self care if you do it every day. That’s the challenging balance: sometimes you have to do temporary things to get through the day, sometimes you have to go exercise and eat a salad in order to stay healthy and make a sustainable life.

What I find bizarre is the shamey tone that the author brings to this argument.

She says that “The result of this [self care] is that we end up spending a lot of resources on unnecessary things, even as we are trying to work for a less wasteful and anti-consumerist world. We’ve bought into the consumerism that we claim to oppose.”

I find myself confused. It’s easy to say that if something isn’t totally ethical then it isn’t sustainable, and therefore isn’t self care. We should be able to get by without it. But that’s not always true. There are times that a person requires something that isn’t great in order to survive. An example: in order for me to eat in a healthy manner, I have to live in opposition to my values; I cannot be a vegan, which is what I logically believe is the most ethical position to take. If I were to eat vegan, I almost certainly would fall back into my eating disorder and seriously hurt myself or potentially die.

That would not change if society were different or if I had a better communal support system. It is a simple fact about my combination of sensory sensitivities, difficulties with restriction, and rule following nature. Sometimes there is no circumstance in which we can both take care of ourselves and do the best thing. That’s ok. My biggest beef with this piece is that it doesn’t recognize how hard someone can try to be a good person and still need to “fall short” in some ways in order to take care of themselves. I don’t think we need any more shame around the concept of self care. We have so much already.

 

What the article gets really really right is the promotion of more community care instead of an individualized understanding of health. We are interdependent and it is important to recognize that. I’ve always thought that an important part of self care is recognizing when we need others, so I think we might be down to semantics in distinguishing self care from community care. You can put the focus on the individual by saying everyone is responsible for asking for help when they need it, or you can put the focus on the community by saying that it’s impossible for any of us to meet all of our own needs. I think it’s important to remember both, as the community can’t help unless we articulate our needs, and we cannot take care of ourselves without community.

It is absolutely important to recognize that the language of self care can put the onus of survival on an individual rather than on systems. Self care cannot exist in a vacuum without advocating for change to workplaces that are unsupportive or relationships that aren’t interdependent. This is the most important element of this piece in my eyes: self care cannot replace a society that is functional for the people in it. What I disagree with is the idea that self care or even coping has no place in a “good” society.

“It sounds so simple, but here’s the big secret: community care can make our unsustainable coping mechanisms obsolete. If we can build a culture of community care, where people’s needs are met through each other, coping becomes unnecessary. We can cut down on waste. We can make our communities sustainable.”

There will never be a community so sustainable that people never have to use unsustainable coping mechanisms for some things, or so sustainable that some people don’t have to use long term self care methods that are not ideal. That is not possible and saying it is is a utopian myth. There will always be times that in order to get by, we will need to do things that aren’t perfect or that might hurt other people. One of the hardest things about engaging in self care is recognizing that sometimes it is ok to prioritize yourself and your own well being over other people.

I think that this article gives us a great starting point: communal care needs to be part of our understanding of living a healthy life. But I think that a healthy life involves a balance: giving and receiving help from others, while also sometimes prioritizing your own needs.

Not everything we do can be sustainable, perfectly ethical, or communal. Sometimes we have to do things for ourselves that means someone else won’t get our time, or that we take a resource from someone else. It’s not ideal, but it is also reality, and shaming people for being realistic about taking care of themselves is pretty shitty in my opinion. So yes, let’s aim for community care. We absolutely can do better. But making all unsustainable coping mechanisms obsolete? Ha. There is no system under which I will never want to binge Netflix and eat a tub of ice cream. Unsustainable coping mechanisms are part of life, because some situations are unsustainable and that will never change.

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.

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.

It Doesn’t Matter If You Turned Out Fine

One of the recurring discussions that pops up on my social media feeds and blog rolls is one that people have strong opinions about: hitting or spanking kids to punish them. One of the most common exchanges/memes I see in regards to spanking goes like this:

“I got hit and I turned out fine.”

“Do you think it’s ok to hit kids? Then you’re not fine.”

I have problems with both elements of this exchange. While I agree that thinking it’s ok to hit children means you probably aren’t a paragon of ethics, I don’t think the response really gets to the heart of the matter, which is this: hitting someone is a Bad Thing. It hurts them. You do not need to show any additional harm beyond the actual hitting. You don’t need to show that it causes psychological damage later in life. Hitting another person all on its own is inappropriate.

The ONLY way that spanking advocates could show that they are correct is by a. showing that the benefits outweigh the negatives or b. showing that hitting their child does not actually harm the child at all. B seems fairly impossible since you are physically striking the kid. Maybe there’s some level of spanking that doesn’t actually hurt the kid at all, but then why are you doing it if the point is to punish?

Because once again, hitting someone else is IN AND OF ITSELF a harm. It is actually the most basic definition of harm most people can come up with. It causes physical pain and/or suffering. I do not know how else to explain that hitting someone is not a good thing, and that the age of the person is not relevant.

So we move on to a. The ONLY way that spanking would be justified is if it turns out it is actually a super effective disciplinary method that works SO MUCH better than any other way of raising your kid that it outweighs the immediate harm you’re doing the child.

It’s pretty easy to look around and see tons of amazing, awesome people who didn’t get hit as children. It’s easy to find studies that show negative outcomes of spanking in terms of its use in discipline. It doesn’t make kids better behaved: it makes them more likely to lie, more aggressive, and more reliant on external forms of punishment than internal morality. Really the only benefit you’re getting is kids whose immediate compliance is faster.

So yeah, it’s possible there are long term consequences to spanking that damage someone’s mental health. But it also doesn’t matter. Because you’re hitting someone. You’re hitting someone who’s defenseless and trusts you. That’s bad. And we don’t have evidence that hitting someone is a miracle cure for bad behavior.

 

So no matter how many awesome people did get hit, it doesn’t matter. Because the only thing that could ever justify hitting a kid is if there is literally no other way to discipline them. And that is just very clearly not the case. So next time someone brings up “well I turned out fine,” point out to them that it’s completely irrelevant! Lots of people turn out just fine with all kinds of disciplinary styles! The fact that your defense of your parents’ child rearing style is “it didn’t fuck me up,” says that you know it’s bad and are looking for an excuse.

No more excuses. There is no evidence that spanking turns out people who are better. And all other things being just about equal, not hitting people is better than hitting people.