Plans, changes, anxiety, depression, and conflict

I have anxiety and depression and probably some other shit I get very scared and panicked when someone says “I’ll be right back” and walks away from me and if I’m supposed to meet someone and they are late or don’t show up. I guess it’s abandonment.
So my question is: how do I keep from flipping out on my boyfriend when he accidentally distresses me, like when I’m supposed to pick him up but he finds another way home. His phone is off so he can’t tell me.
And I guess my other question: is it fair for him to get frustrated and angry with me when I tell him that doing this is inconsiderate? He said he thought he’d get home before I left to get him so it wasn’t intentional, but I still feel disrespected.
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ealsocialskills said:
This doesn’t sound to me like it’s just a depression and anxiety problem. It sounds to me like either something is going wrong with your communication with friends, or people aren’t treating you well, or a combination of both. It’s hard for me to tell which from a distance.
Having anxiety and depression does not mean that you are wrong every time you are upset about something. Sometimes, you’re going to be upset because something is actually wrong.
It is not unreasonable to want people you make plans with to either show up or let you know that they’re not going to make it. It is not unreasonable to want people to tell you if they are going to be late. It is not unreasonable to want people you’re supposed to pick up to let you know if they found another ride. Those expectations are normal, and not something unusual caused by mental illness. Most people would be upset if others habitually made plans and failed to show up.
(It might be unreasonable to expect people to refrain for saying “I’ll be right back” and walking away, depending on the context. For instance, that’s sometimes a euphemism for going to the bathroom. So if you’re, say, eating at a restaurant and someone says that, it’s probably not reasonable to object.  But if they’re, say, leaving you in the middle of a crowded park without any clear plans for how you’re going to reconnect, that’s a problem. There are any number of configurations for that; it’s hard for me to tell just based on the phrase.)
It is entirely reasonable to want people to care that they flaked in a way that was distressing. Even if they did it for a reason or thought it would be ok, they should care that they flaked on you and apologize if it caused you distress. They should also be willing to think about how to avoid that problem in the future. In close relationships, people make mistakes from time to time that cause one another inadvertent distress. If someone gets angry and defensive every time you feel upset about something they did, something’s going wrong.
That said, it’s not ok to regularly flip out at people close to you for making mistakes. It’s hard for me to tell from your description if that’s what’s happening. Like, I could see a few possibilities:
Possibility #1: You’re actually flipping out in a way that’s not reasonable. Eg:
  • You: WTF?! Why didn’t you show up?! You’re a terrible boyfriend. You always do this. Why don’t you respect me?
  • Him: I thought I’d get home first. I’m sorry.
  • You: That’s not good enough. You’re awful. Why can’t you be considerate ever?

If this is what’s going on, you flipping out may well be part of the problem (but not the whole problem, because wanting people to either keep plans or let you know that they’ve changed is entirely reasonable even if the way you react is not.)

If actually flipping out on people is part of the problem, then it’s important to learn how to distinguish between how it feels to have anxiety triggered and what someone actually did. If you’re freaking out, it might be best to hold off on talking about what’s going on until you’ve calmed down. It might also help to say explicitly something like “I’m not rational right now; let’s talk about this in a few minutes.” (This is also the kind of issue that a lot of people find therapy helpful for. I don’t know if you’re someone who would find therapy helpful, but it might be worth looking into.)

But even if you are doing things that look like flipping out, that may be misleading. It’s possible that he’s intentionally provoking you in order to make you look unreasonable to avoid dealing with the problem. That brings us to possibility #2:

Possibility #2: He’s accusing you of flipping out as a way to avoid dealing with the thing you’re complaining about. Eg:

  • You: I went to pick you up and you weren’t there. What gives?
  • Him: Chill. I thought I’d be home by the time you got here. Why are you flipping out on me?
  • You: Can you please call me if plans change?
  • Him: Why are you accusing me of being inconsiderate? I didn’t do anything wrong.

For more on that kind of dynamic, see this post and this post.

Possibility #3: You’re responding to a pattern, he’s insisting that you treat it as an isolated incident, and that’s pissing you off. Eg:

  • You: I went to go pick you up and you weren’t there and didn’t call. Can you please let me know if plans change.
  • Him: Oh, sorry, I thought you’d come home first and see that I was already here.
  • You: Ok, but this happened last week too. Can we figure out how to stop it from happened?
  • Him: That happened last week. That’s over and done with.
  • You (raising your voice): This keeps happening! I need it to stop!
  • Him: Why are you flipping out? I *said* I was sorry.

Possibility #4: You both mean well, but you’re setting off each other’s berserk buttons inadvertently. Eg:

  • You (visibly close to melting down): You weren’t there?! You are here? Why weren’t you there?
  • Him (freaked out by the idea that he did something seriously upsetting, also visibly close to meltdown): I tried to be there! I did! I thought it would be ok!

If that’s the problem, finding an alternate way to communicate about problems might solve the problem. For instance, it might mean that you need to type instead of speaking, or use IM in different rooms, or talk on the phone. Or it might mean that you need ground rules about how to communicate in a conflict without setting each other off. For instance, some people need to explicitly reassure each other that this is about a specific thing and not your judgement of whether they’re a good person (sometimes judging people is appropriate and necessary. This kind of reassurance only help if that really *isn’t* the issue).

This is not an exhaustive list. There are other patterns of interaction that could be going on here. But whatever is going on, it probably isn’t just your depression and anxiety making you unreasonable. It is ok to expect people to either keep plans or let you know when they have changed.

You don’t have to like being disabled

This is what I think disability acceptance means:

  • Facing what your abilities are and aren’t
  • Accepting yourself as already having value
  • Living your life now and doing things you care about.
  • Not putting your life on hold waiting for a cure

But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:

  • It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
  • It’s ok to want treatment and to be frustrated that it isn’t available
  • It’s ok to pursue treatment that *is* available
  • It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
  • It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
  • All of those things are very personal choices, and no one’s business but your own
  • None of them are betrayals of acceptance or other disabled people

The point of acceptance is to get past magical thinking.

It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.

Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.

Self-diagnosed people

How do you feel about self-diagnosed autistics?
realsocialskills said:
I think that autistic people are autistic whether or not that they have been diagnosed.
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.

Acceptance is the opposite of giving up

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

Document communication

This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

Some specific things you can look for:

  • Do they turn their head when you come in?
  • Flap their hands when they’re angry or happy?
  • Vocalize?
  • Say words that may or may not be communicative? 
  • Try to get out of their chair?
  • Sing?
  • Become more calm or agitated when you speak to them?
  • Make eye contact?
  • Say numbers?
  • (There are any number of other things)

Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.

Liking things is never age-inappropriate

People get to like things. It’s ok to like whatever you like.

Even if it’s a show for little kids

Or toys. Or kids’ art supplies. Or picture books. Or YA novels.

When people like things, they’re being people who like things, not being age-inappropriate.

It’s wrong to invade spaces that are intended for young children, or to attempt to get children to accept you as a peer. That’s a boundary violation. Age matters when you’re interacting with others, and some things are genuinely wrong for adults to do.

But liking the thing is never the problem. It’s always ok to like things. Adulthood happens when you reach the age of adulthood. It is not something you have to earn by turning away from awesome things you like.

Nice Lady Therapists

Content warning: this post is about physical and emotional harm done to people (especially children) with disabilities by (mostly) female therapists. Proceed with caution.

This is a hard post to write. It’s about abuse. It’s about a kind of abuse I haven’t seen described much. I think abuse is the right word, even though a lot of abusers probably genuinely think they’re doing the right thing.

Anyway, here goes:

Many, many people with disabilities I know have been harmed or even outright abused by Nice Lady Therapists. (Usual caveat: not all therapists are abusive, and this post is not opposition to childhood therapy. I’m saying that therapists need to stop hurting kids and other vulnerable people, not that therapy is evil. Pointing out that therapy is often important and that many therapists are good is not an answer to what I am describing.)

Nice Lady Therapists tell us that, whatever they do to us is by definition nice, and good for us. And that we like it, and that they love us, and that they are rescuing us, and that we are grateful.

They have a brightly-decorated therapy room full of toys, and assure every adult they come across that ~their kids~ love therapy. They use a lot of praise and enthusiastic affect, and maybe positive reinforcement with stickers and prizes. They might call the things they have kids do games. Some of them really do play games.

And every interaction with them is degrading in a way that’s hard to pinpoint, and hard to recover from. They do all kinds of things to kids with disabilities that typically developing kids would never be expected to tolerate. And they do it with a smile, and expect the kids they’re doing it to to smile back.

Sometimes it hurts physically, sometimes it hurts emotionally. Sometimes it’s a matter of being 12 years old and expected to trace a picture for toddlers for the zillionth time. And being told “This is fun! I used to do this all the time when I was a kid!”.

Sometimes it’s a matter of being forced to do a frightening or physically painful exercise, and being forbidden to express pain or fear. It hurts their feelings if a kid is upset. Don’t we know how much she cares? Don’t we know that she’d never do anything to hurt us? Don’t we want to learn and grow up to be independent?

Sometimes it’s a matter of being expected to accept intensely bad advice as though it’s insight. For instance, getting sent to therapy because you’re not making friends. And being told “We are all friends in this school! You have to give the other kids a chance.” And, if you try to explain otherwise, she patiently and lovingly explains to you why your thinking is distorted and you’ll have lots of friends if you just let yourself try.

Sometimes it’s – crossing a physical line. Touching in a way they have no good reason to be touching. Or touching over the objections of the kid in a way that is in no way justified by therapy goals. Sometimes sexually, sometimes not. Sometimes in ways that are against ethical standards of practice, sometimes not. But intimately, invasively. And if you say no, she patiently, lovingly, explains that you have nothing to be afraid of and that everything is ok. And that if you just trust her, you will have fun and get better. And when her profession has professional training about boundaries and appropriate touch, she thinks or even says “women don’t do that.”

Some male therapists do many of these things too, but there’s a gendered version of it that usually comes from women. And that can cause a problem for people with disabilities who are recovering from this. Most things about trauma and abuse of power are about misogyny in some way. They’re about men hurting women, and taking advantage of power dynamics that favor men to do so. Those descriptions are important because that pattern is common. But it is not the only abuse pattern, and it is not the only gendered abuse pattern.

Female therapists are subjected to misogyny and the power of men just as much as any other women. But they also have tremendous power over people with disabilities, many of whom are deeply dehumanized. The assumption that women have neither the power nor the ability to hurt anyone gets really dangerous really quickly for children with disabilities receiving therapy.

And it also means that people with disabilities often have a different relationship to gender than most nondisabled people. If you’ve been harmed by women over and over and assured that you liked it, it complicates things. If you’re a girl, it can make it hard to see a group of women as a Safe Space, especially if they think the thing making it safe is keeping the men out. If you’re a boy who has been repeatedly harmed by women who believed they were powerless, it can be hard to understand that the gender hierarchies that feminists and others talk about actually do exist. And it complicates things in any number of other ways.

But if you have been hurt by Nice Lady Therapists, you are not alone. If it has affected your relationship to gender, you are not alone. If it has left scars that others say you shouldn’t have because she was nice and meant well, you are not alone.

You don’t have to think someone is nice because she says she is. It’s ok to think that someone is hurting you even if that upsets them. You don’t have to think someone is safe or loving just because they are a woman or a therapist or smiling. Women can be abusive too. In human services, it is common. You are not alone, and it was wrong to treat you that way. The harm done to you was not because of your disability, and it’s not something that you could have fixed by being more cooperative or working harder or having a better attitude.  It’s not your fault, and it’s not because of anything wrong with you. And it’s not your fault if it still hurts.

Honesty

When you’re teaching vulnerable kids social skills, it’s important to tell the truth.

They need skills for living in the world as it is, not as you would like it to be.

For instance: If you teach them to walk away from bullies, you have to tell them that sometimes bullies will follow them.

If you teach them to tell an adult, you have to teach them that sometimes the adult won’t care, or will take the bully’s side, or will tell them to stop tattling.

If you teach them to say “That hurts my feelings!”, you have to teach them that some bullies will laugh at them.

If you don’t teach kids that, when those things happen, they will think it is their fault. Or they will think that you don’t care. Either way, they’re not likely to be able to come to you for further support.

It’s much better to admit that your answers are imperfect. It’s much better to admit when you don’t know how to help. It’s much better if you can listen.

Sometimes the best thing you can say is “I’m sorry that people are being so mean to you. Do you want to talk about it?" 

“As a last resort”

Content warning: This is a graphic post about brutality towards people with disabilities. ABA and justifications for abuse are discussed. Proceed with caution.

People do a lot of brutal things to people with disabilities, including children.

Some examples: pinning them to the floor, punishing them with electric shocks, medicating them into immobility, putting them in 10-40 hours a week of repetitive behavioral therapy, taking away everything they care about and making them earn it by complying with therapy, taking away their food, and confining them in small places.

These things are now somewhat politically unpopular. We identify, as a culture, as having got past that point. We think of this kind of brutality as something that happened in the past, even though it is still common.

What this means in practice is that whenever people do brutal things to someone with a disability, it will be called the last resort. People doing the brutal things will claim that they minimize them, that there are protections in place, and that they only do them when necessary.

For example, this is an excerpt from the (as of this post) current ethical standards for BCBAs (certified ABA experts):

“4.05 Reinforcement/Punishment.

The behavior analyst recommends reinforcement rather than punishment whenever possible. If punishment procedures are necessary, the behavior analyst always includes reinforcement procedures for alternative behavior in the program.

4.06 Avoiding Harmful Reinforcers. RBT

The behavior analyst minimizes the use of items as potential reinforcers that maybe harmful to the long-term health of the client or participant (e.g., cigarettes, sugar or fat-laden food), or that may require undesirably marked deprivation procedures as motivating operations.”

In other words, the current standards of ethics for ABA practices explicitly allow punishment, harmful reinforcers, and “undesirably marked deprivation procedures”. But, they claim to “minimize” it, and only do it when they consider it necessary in some way.

This is an empty claim. Everyone who has ever used harmful reinforcers and brutal punishments has claimed that they are only used when they are necessary. Even the people who deprived children of food and made them live and study on electrified floors (graphic link, proceed with caution.) Even the electric shocks and food deprivation used by the Judge Rotenburg Center do not violate the BCBA ethical guidelines, because they claim that they are necessary and only used in extreme cases (even though they shock people for things like standing up from chairs without permission.) 

Whenever any of this is done to someone, it will be justified as “a last resort”. Even if it’s an explicit part of their plan. Even if it’s done regularly with no attempt to transition to another approach. Even if nothing else has ever been tried. Someone who is treated brutally will be assumed to have deserved it.

People call things last resorts to justify doing them. They choose to do brutal things to a vulnerable person, but they think of it as inevitable because it is “the last resort”. Calling something “the last resort” means “it’s that person’s fault I’m doing this; I could not possibly do otherwise.”

Treating someone in your care brutally and then blaming them for your choices is inexcusable. 

To those treated brutally and told it was a last resort: I’m sorry that happened to you. I’m even more sorry if it’s still happening. It’s not your fault. It’s not because of anything you did, and it’s not because there’s anything wrong with your mind. You were abused because others chose to abuse you.

The point is to build

Your last post mentioned “coming to terms with how awful the world is.” When recognize that injustice is everywhere, and that you personally benefit from it, is it ok to find joy in the world even though it’s awful? Things like (in the US) visiting a national park and having a fun hike, when the land was taken a long time ago from Native Americans; or watching a good movie that’s problematic; or enjoying sledding after a snowstorm that was responsible for a few deaths?
 For me it is impossible to keep injustice in mind all the time. So whenever I have fun, or feel happy, I feel guilty later because that fun indirectly came out of injustice, and instead of fighting that injustice I was enjoying it. How can you keep in mind that the world is a horrible place without neglecting your right (is it a right even?) to joy?
realsocialskills said:
The world contains much, much more than pain and injustice. It’s important to acknowledge and fight evil. It’s also important not to become so consumed by the fight that you can only see the horrible things.
The point is to build and to love. (And, sometimes, to fight battles that need fighting.)
Sometimes, people try to seek out some sort of purity by cutting out everything tainted by injustice. That doesn’t work, because everything is tainted in some way. If you go down that road seeking purity, you get stuck cutting out more and more things and not being able to find anything pure enough to like without shame. That doesn’t help. Everything is connected to something destructive. Sometimes particular kinds of destructiveness are dealbreaking, but it can’t be everything that has any connection to something bad. You can’t become pure that way, but you can do a lot of harm to yourself and others trying.
Liking things is good. Misery isn’t a moral accomplishment. If you want to make the world a better place, treat people right and build something good. The point is not to be miserable at the horrors of the world. The point is to build.
This is not about attaining moral purity through abstinence and misery. It’s about doing the work of making things better and building worthwhile things, and loving others more than our culture hates them. Your purity will not help anyone. Your work can.
To use some of the examples you gave:
Regarding the snow: it didn’t snow so that you could sled. Enjoying the sledding will not hurt anyone. Just don’t brag about sledding to people who are really upset about the snow. People who have been harmed by the snow might not want to hear how much you’re enjoying the snow, but that doesn’t mean that enjoying it is wicked, it just means it’s important to be considerate.
Watching a good movie that’s problematic: All movies have horrible aspects to one degree or another. It’s ok to ignore them and like something; *that’s the only way anyone ever gets to like anything in the media*.
But it’s also important to be willing to acknowledge that the problems are there and not be obnoxious about other people not wanting to hear about the thing you like. Everyone’s patterns of what’s deal-breaking are different. If the ableism in a movie is dealbreaking for someone, respect that, and don’t talk to them about how great you think it is. If someone got badly injured in the snow, don’t talk to them about how wonderful the snow is. Being considerate of other people’s boundaries, and their right to decide what is and is not personally dealbreaking, goes a long way.
You are allowed to be happy. It’s good to be happy. There’s a lot that’s wrong with the world, really really wrong, even. But…
The point is not to be constantly miserable about it. The point is not to wallow in shame. The point is to build.
Some building is activism and advocacy and fighting injustice. Some of it is just… building. All of it involves identifying situations in which you have the power to act, and finding things you can do that make good things more possible.
You can like things; you can love; it is good to like things and enjoy life. Refusing to ever like anything impure will not make the world better; your work can.