Hey friends! Just a note that I will not be posting until mid July due to my wedding and honeymoon. Have a fabulous summer folks!
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.
It’s not uncommon for friends and family of mine to come to me with questions about mental health, support, and services. Recently, I’ve had a couple of people ask about how they can support someone with depression, anxiety, or another mental illness. Specifically, what do you do when you have a friend or family member who is really struggling and doesn’t know what to do. I hope to put together some ideas for folks who themselves are in the spiraling downwards stage of depression and link that here, so that you can pass it along if you’re worried about a friend, but in the meantime, how do you encourage someone to get help and support them in making healthy decisions when they can barely get out of bed?
Before I begin, these are suggestions. They are based on my experience of depression and what I found helpful. Everyone who deals with mental illness is different. If possible, ask your friend what would be helpful for them, and always check in to see if what you’re doing works for them. This one’s going to be a long one because I want to throw out a bunch of options for people to work with. You don’t have to try all of these things, but maybe try one a week.
So here are a few things you can do to support someone who’s in a nastybad place.
- Be Honest
One of the things that was very frustrating to me about being incredibly sick was the way that people would dance around the topic. Very few people said to me straight to my face “You have an eating disorder. I’m worried about you. I want you to be healthy. What can I do?” It’s refreshing when someone says what they mean. It doesn’t have to sound like an after school special either. Use the language you normally would use, whether that’s “Hey I see that the jerkbrains have you down right now,” or “You seem really unhappy lately.” Whatever you do, don’t try to manipulate the person into health or sneak your support in without making sure they want it. Even if they are sick, they’re an adult, and they deserve the loudest voice in their treatment.
2. Be Proactive
It’s very common for supportive family and friends to ask “how can I help?” This comes from a very understandable place. You want to be helpful, you’re not sure what they want or what you can do, so you ask. Unfortunately, one of the things that is most overwhelming about being incredibly depressed/anxious is that you often have NO idea what will help. So instead of asking a really wide open question like that, I’d recommend making specific suggestions. Something like “Would you like me to make you food? I can make a sandwich or a salad.” “Does it feel better to talk about it or be distracted?” “I’d like to come over and see how you are today. Is that ok?” Depression is exhausting and makes every decision feel impossible. Keep the decisions as small as possible: yes or no, this or that. Don’t wait for them to give you an idea of how to help, come up with one yourself.
As a sidenote, this is a great way to help someone with things you think would be good for them. From the outside, it’s easy to look at someone who’s seriously depressed and think that they should eat better, go outside, move their body, leave the house…the list goes on and on. That can be incredibly difficult to do when you’re depressed. So instead of simply telling them that they should, help them. Offer to make them a meal, suggest you take a walk together, ask them to meet up for coffee (you could even say you’ll pick them up and carpool together to decrease the barriers they face). If you can think of something that is getting in their way that you could do for them, do it. This might sound infantilizing, but it’s just like any other acute illness. They’re spending all their energy fighting: you’re giving them a little bit of space to breathe.
3. Be Willing to Be a Normal Friend
Sometimes it’s important for you to jump in to “supporting and helping” mode. But someone who is in a crisis level of depression is still a person and still has the need for connection on a basic human level. Sometimes they want to talk about normal things or act like any other friend: they want to see a movie, they want to make a joke, they want to laugh or smile. So if they seem up for it, it can be nice to do a normal friend activity and not bring up depression for at least a little bit. If it’s possible to distract them from the overwhelming pain, that is a huge gift you can give.
4. Do the Minutiae
Most of helping someone with depression isn’t listening to them late into the night or giving them a great speech that convinces them not to hurt themselves. Most of it is actually really boring. It’s sitting with someone while they call their doctor because otherwise they won’t make an appointment. It’s checking in to see if they’ve taken their meds. It’s doing a load of laundry for them so that they don’t feel too disgusting to leave the house. If you really want to be the supportive friend, you have to truly accept that not only are you seeing them at their most vulnerable, you have to be vulnerable too. You have to be willing to get messy and be bored and do unpleasant things. It’s worth it though.
5. Accept the Awkwardness
One of the more vulnerable things in life is letting another person see you when you are really struggling with your mental health. Imagine someone seeing you when you can’t seem to dress yourself, feed yourself, wash yourself, or do other basic tasks. It’s an experience that can be embarrassing. It’s easy to feel like a child. You are witnessing someone in this situation and they are fully aware that they’re asking for help with things that seem like second nature to you. So recognize that someone is showing you an incredibly vulnerable side of themselves. You may even want to let them know that you’re aware, and that it’s OK, that they can take as much or as little time as they need to do things, and that they can ask you for anything.
It’s easy to see someone who’s struggling and follow your first impulse to try to make them feel better, or tell them it will be ok. What often gets forgotten is that when you’re overwhelmed by depression and anxiety, it can seem like one half of your world isn’t real. There’s such a huge disconnect between your internal emotional experience and the behaviors you witness in the rest of the world. You can feel like you’re losing your grip on reality, or like you must be making things up. It helps a lot for someone to just say “those feelings are totally real. You are not making up how bad it is. You really are fighting a hard battle, and it seriously sucks, and I’m so sorry.”
No, it doesn’t fix anything, but it is incredibly validating to hear that other people believe you, see what you’re doing, and recognize your experience as real. It helps to bridge some of those gaps between internal experience and external reality. It can particularly help if there are negative things happening in someone’s life to point out “Hey, you are not making this up. You’ve been dealing with hard things and maybe your reaction is particularly strong, but it makes complete sense to struggle with this.”
7. Walk the walk
Take care of yourself. I know in many other places in this article I’ve recommended being willing to do anything. What I mean by that is not letting pride get in the way. However you have limits too. If possible, demonstrate healthy boundaries and good self care. Saying something like “I’d really like to help out, but I can’t do x night because it’s date night. Can I help you on y night instead?” If you’re having a chat with them, it’s good to mention things you’re doing to take care of yourself, e.g. “I saw my therapist the other day and we talked through x problem.” It helps to normalize the steps that you’re asking the other person to take, and it also helps them feel less lonely. They’re not especially broken and sick. Other people are working on the same things.
8. Be Willing to Be a Safe Place
This one might be a little bit controversial, but it’s something that I think we should talk openly about. I and many of my friends who have dealt with self harm and suicidality have an intense fear of someone calling 911 on us. Especially for people who are black, autistic, trans, or another vulnerable group, interacting with the police is something to be avoided at all costs because it is dangerous. If you have a friend who has told you that they do not want to go to the ER or interact with the police, please respect that. Work with them to find other ways to keep them safe. Drive them to the ER yourself to get them stitches. Forced hospitalization is not fun for anyone, and if we can avoid it that’s great.
As a side note, one of the things that was most stressful to me when I was self harming was managing other people’s emotions about my self harm. I know that seeing someone you love injuring themselves is AWFUL. It is terrifying and it is painful. Those feelings are real. However in the moment when the person has hurt themselves is not the appropriate time to have that conversation. That’s the time when you need to be calm, ask them if they need to be cleaned up, if they need stitches or a bandage, and hold them tight. I cannot express how big of a deal it was for me when I finally met someone who reacted to my self harm in a calm manner rather than with fear and anger. There is something so validating about a person who loves you accepting that you’ve done this and still communicating that they love you. Save the fear and anger for a less charged moment.
If you have any other suggestions, feel free to drop them in comments!
Content notice: eating disorders, suicidality, self harm
The last couple of months have been trying for me in ways that would be challenging even to the most even keeled and mentally healthy of human beings. Today, my mother told me to remember that I am resilient. I am holding up well.
I have lived through some fairly horrific things. So much so that when I think back on the worst times in my life, I feel completely disconnected from them. Someone else must have done them, because I do not understand how anyone could have done what I did. For some reason I’ve been thinking about college lately. At the time, I hardly thought that anything I did was impressive. I didn’t change the world, I didn’t start my own club or create an initiative, travel abroad, or do anything particularly outstanding, as far as I was aware.
In college, with little variation, I did not eat more than once every two days. There were periods (up to a month or so) during which I ate once a week, supplemented by coffee with milk. In the picture above, I hadn’t eaten in days. My body was remarkably resilient. I could feel it falling apart under me. I was weak and tired, and found my heart and lungs struggling. But every doctor told me that there was nothing wrong, my blood work was good, I could still run and swim and bike and climb. I kept going.
One summer, I took two classes over the course of a month and a half. I could count the number of times I ate during that time on one hand. I walked away with A’s. I don’t understand how I did it, and when I think back on the time, it feels like it must be someone else who did it. That was too much, too painful, too cruel. I could not have done those things. How did I do those things? How did my mind follow a single sentence, much less Kant and Aristotle, Nietszche and Mill? When it was happening, it hardly seemed extraordinary. But now? No one could survive that.
But I did survive. I put one foot in front of the other. I held down a job, and I took my classes, and I graduated, and years later, I finally started to eat again. I became healthy. I felt joy again. I felt like I was giving up, over and over again. My body kept moving but I felt no purpose. I’m not sure if that constitutes resilience. I know that I could not live through it again, even as I know that nothing I experience now could ever feel as awful as spending years of my life actively suicidal every moment of every day. Is it resilience if you only keep going because you know you can? Because you know you’ve been through worse? I don’t understand how I did it, but it is hard evidence that I can survive nearly anything.
I suppose it doesn’t matter why as long as you keep going. Your boss tells you your work isn’t quite up to par and it feels awful, but you keep going. You haven’t seen your friends in weeks and you know you should, but you just keep going. Is this resilience? Because if I’m honest, it feels awful.
I don’t particularly want to keep going anymore. I want to collapse on the couch and eat tubs of ice cream. I want to drink a bottle of wine in one sitting. I want to stop picking up my phone and disappear from work. Perhaps that’s the secret of resilience: knowing how to be miserable for days and weeks and months on end. Not knowing if it will end, but moving forward nonetheless. I’ve found that most traits that keep you healthy feel awful in the moment. I suppose mental health is no different.
So I guess that I will keep feeling hideous and broken. That’s how it’s supposed to feel right now. In a year or two years I will look back and wonder “how did I survive?” And then I will continue to live through the seemingly unlivable parts of life. It is mundane how much pain there is in a single life, even as living that pain is an experience that is full of awe and fear. I think on the enormity of living in starvation for years, and how simple it seemed at the time. How normal. The juxtoposition with how overwhelming this feels is stark. I can feel my feelings now. But I will hold on to the resilience I had when I was cold and sick and broken. It is one of the few lessons that my eating disorder has given me.
Just pick up one foot and put it in front of the other. Repeat.
Anger is one of the stages of grief, or at least that’s what literally every self help book says. This week I’ve been angry. Easy enough, right? I know that my temper will be shorter than usual, and I’ll be mad at people who don’t deserve it. I’ll take my emotions with a grain of salt, and try not to put myself in stressful situations. There’s ways to deal with this.
Except that anger doesn’t always come out in those clear, straightforward ways you expect. It distorts things. It makes harsh lines and colors where the world is really soft and confused. I have been numb to politics and injustice for months now, too drawn up in my personal anxieties and sadnesses to expand my empathy beyond immediate family and friends. Yet suddenly, I am strident, passionate, full of declamations about mental illness and President Trump and self harm. Somehow grief has turned into this righteous anger at the state of the world.
And then there was the funeral, and suddenly the anger was turned to religion, and it felt righteous, and I know that it was just sadness. Anger seeped away, and my throat went tight. I haven’t been able to swallow properly in days, the tightness in my shoulders edging upwards until it feels like I’m going to puke out emotion.
Yesterday I had to admit to myself the hard truth. Grief is turning to my familiar friend depression. I’m beginning to lose joy again. It’s the first thing that goes when depression appears. It’s the empty sucking hole of inert disinterest. Why bother to go on living? It barely feels like anything anyway. The books tell me that depression is a stage of grief too, but perhaps that’s easier to bear when you haven’t lived for years under the weight of depression. Any return feels like an ending. Fear overwhelms the depression, and I begin to panic, wondering if the reprieve of the last two years was a blip in the larger flatline of my life.
What’s hard to explain is the way that the grief turns things. I thought I knew anger, I thought I could predict the path of healing. But it splinters your life in ways you don’t expect. I find myself sitting at work, reading the same line over and over again. I’ve never done that before. I get home, and my head hurts, my body aches, my chest feels hollowed out. I have no energy. I have always been active, but not today. Grief is not the same as the depression that is so familiar. Depression is a dark lens, but a predictable one. Grief is a kaleidoscope, turning some things bright and some things distorted and breaking others into a thousand pieces. It is the essence of unpredictable.
I am splintered and scooped out and empty inside. And where yesterday was righteous anger, today I can’t write a word about impeachments or intelligence leaks, all I can write is this emo bullshit that does nothing but lets it out and lets you in.
I’m grieving, and waiting for acceptance.
Last week, my fiance’s father died.
I don’t know what to write after that. It’s less than two months until our wedding. Later this summer, fiance’s older brother is moving away to complete a pastoral program. In the fall, there’s a new nibling on its way. Fiance’s family packs a lot of life into six months.
I live in the future and in the past. My therapists inform me that this is not the best way to live if you’re looking to minimize suffering. The present can only contain so much suffering, but the past and future are infinite you know. But here we are, which means that my mind is already two, four, six months into the future, imagining vows and journeys and births.
And I’m looking at a dead body.
I don’t do well with contradictions. It turns out that one of the traits of autism is black and white thinking (whodathunk), and for me that is particularly acute when it comes to emotions. I live my life in themes. I remember moods and underlying concepts. High school was anxiety and driven perfectionism. College was exhaustion and depression. Graduation was confusion and exploration. And now? Now I am all things, and I cannot understand any of them.
I never imagined that executive functioning might be the reason I struggle to parse my emotions into manageable pieces. I feel them as wholes, overwhelming waves of SOMETHING that is indescribable and undefinable. They cannot be chopped into reasons and elements and components. They just exist. But it turns out that emotions aren’t actually incomprehensible, unreasoning beasts. It turns out that there is a rhyme and reason to them, and with the right skills you can break them down in ways that make sense. And there’s the rub: my brain’s particular foibles make this mess of allthethingsthatlifecanhold not only overwhelming, but incomprehensible. How can I feel joy and excitement, then cry five minutes later?
Life doesn’t actually happen in clear, delineated pieces that allow you to process each one separately. The whole process of planning my wedding has been intermingled with fear, anxiety, and sadness at father in law’s diagnosis and decline. One month after we were engaged, he was diagnosed. And now, just over a month before we are to be married, he’s gone. Even in its chaos, life gives me some shapes and patterns to hold on to. Patterns are the only way that I know how to cope. Rituals, routines, comfort. 3 comes after 2, and it’s easy to rely on orders that don’t change.
My mantra these days is that events are separate. They feel mixed in and mushed together, but despite the fact that this death will affect my wedding, my wedding is still a separate event, fully contained, with its own joys and anxieties. I am allowed to feel all of on its own terms, without guilt. He is dead and I am making happy, exciting promises to my future husband. He is dead and there is a baby coming. Life doesn’t exist in “but”s, it exists in “and”s.
Rather than exchanging rings, my fiance and I have decided to get ampersand tattoos (no comments on the wisdom of wedding tattoos please). The symbol feels more fitting now. We aren’t removing the part of the sentence that was his father. We are adding to it. I hope that would have made him happy.
Picture thanks to Kaitlin Mackenzie Photography.
Hello all! It’s been quite some time since I posted, and I am so so sorry that I haven’t been keeping up. Life has been throwing a lot of curveballs my way, from a death in the family, to some wedding planning panic, to being short staffed at work during our two largest events of the year. But I’m back and plan to keep up my regular posting schedule of one post a week from here on out!
With that said, I’d love to hear some feedback from you! I’ve been writing this blog for over three years now, and in that time I’ve covered a lot of ground. There aren’t quite as many things burning in my fingers to get out on the page. Do you have ideas for what you’d like to hear me write about? Send them to me at email@example.com. Thanks buds, can’t wait to get writing again.