feelings

Open letter to sick kids and disabled kids.

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

When parents ask invasive questions

Hi. My parents are always asking me why I do things like rock back and forth or become unable to talk. When I say “I don’t know” they press me until I throw wordsoup at them. If I answer “I was overloaded” or whatever “Why were you overloaded?” “The lights.” “Why did the lights bug you today and not yesterday?” “I didn’t sleep well.” “Why didn’t you sleep well?” They go farther and farther until I say I don’t know, then press me until I make up reasons. I hate it. Help?
realsocialskills said:
That’s hard. There are no universal strategies that work for everyone in this case, and you might not be able to get them to stop, particularly if you are still living with them. That said, here are some possibilities:
Depending on your relationship with them, it might help to talk to them about it when you’re all calm. If they care about how you feel, it might help to tell them that it’s hurting you, possibly along the lines of:
  • Mom, when I am rocking back and forth or unable to speak, the last thing I want to do is talk about it. It really hurts my feelings when you press me for answers. There’s always a reason, but I don’t always know it, and it’s not something I want to talk about when I’m in that state of mind. When I’m rocking or unable to speak, I’d prefer that you leave me be.
  • or:
  • Dad, I get the sense that when I rock or can’t speak, it makes you very worried and you want to find out exactly what’s going on. I know you mean well, but that doesn’t help. Rocking and losing speech sometimes is actually fairly normal for autistic people, and it hurts my feelings when you act like it’s a problem to be solved. When I rock or can’t talk, that’s ok, and I’d prefer that you let me be and stop trying to investigate.
  • This only works if your parents care about your feelings and are likely to believe you. I don’t know you or your family, so I can’t tell you whether or not you have that kind of relationship.

Also depending on your relationship with them, you might be able to unilaterally refuse to talk about these things. This depends on how much power you have and how they are likely to react, but it’s a possibility worth considering:

  • If you refuse explicitly and say “I do not want to talk about that”, they will probably get angry
  • But it’s hard for them to argue with, particularly if you adopt a broken record approach and don’t answer questions like “why not?”, or answer them in closed ways like “That’s private.”
  • Whether this is a good idea depends on what your parents are likely to do if they get angry, and whether you consider that consequence bearable.
  • If all they’re likely to do is get angry or yell at you, it’s probably in your interest to develop a tolerance for yelling and anger
  • This is a good post by Dave Hingsburger about a man with a developmental disability learning to tolerate parental anger

Another possible broken-record approach:

  • When they’re asking, it might help to say “because I’m autistic”, and “because that’s what autistic people do” in response to all of their questions
  • Or something lighter like shrugging and saying “My brain works in mysterious ways”, if you can pull off a light tone with that.
  • This might work better than outright refusing or saying “I don’t know”, since it’s an answer, but it doesn’t get into details

Another possibility: infodump and bore them:

  • If they want to ask you about rocking or losing speech, you might try telling them every single thing you can think of about rocking and losing speech, in as verbose a manner as you can manage
  • And answer every followup question with another longwinded monologue
  • Infodumping can be a superpower of self defense. As Laura Hershey put it about wheelchair users blocking inaccessible doors, such power should not be wasted
  • If you’re infodumping and answering the question you want to answer rather than the one they want you to answer, that gives you power

Another possibility: lie

  • It might help to make up something that sounds plausible and just answer that every time they ask
  • Lying can be easier than trying to tell the truth
  • Particularly if you practice the lie and refine it to become an answer they find satisfying
  • “Why were you rocking?” “Because I was overloaded.” “Why?” “Because of the lights.” “Why did the lights bother you today and not yesterday?” “Today the lights were different. I think the bulbs are burning out.”
  • It is ok to lie when people are harassing you about things that are none of their business, even if they love you, even if they are your parents

Another possibility: Aggressively change the subject when they ask questions you don’t want to answer;

  • This is particularly effective if they have things they are particularly interested in
  • Eg “Why were you rocking?” “So, are you looking forward to the big game tonight?”
  • This doesn’t work on everyone, but it can be very effective with some people

Another possibility: Talk about the things they’re objecting to in positive terms:

  • “Why were you rocking?” “Because rocking is awesome!”
  • “Why weren’t you talking?” “Because words are overrated and the space outside of words is beautiful”
  • This can be disarming, in part because it’s rude to argue with people about things they like
  • They might follow up with: “But other people think it looks weird”, which you can answer “That’s their problem.” or “That’s ok.”
  • They might also say “That’s inappropriate”. I don’t know a great rhetorical response to that one, but people who say that are in fact wrong.

Another possibility: Turn the questions back on them:

  • “Why were you rocking?” “Why do you ask?”
  • This can be surprisingly effective with a lot of people, particularly if you can manage to sound curious or therapeutic.
  • Having a snarky/offended tone isn’t quite as effective, but it can sometimes work too, because it implies “that was not an appropriate question”. That tone will get some people to back off; it will cause others to argue

These are some of the strategies I know. Captain Awkward also talks about parents and boundaries a lot. You might want to take a look through her archives. (That said, take her advice about therapy with a grain of salt. What she says is true for a lot of people, but it isn’t necessarily going to be good advice for people with disabilities, particularly teenagers).

Beyond that, in any case, I think it’s important to keep in mind that this isn’t your fault, and that your parents should not be doing this. They may not intend any harm, they may well think they’re helping you, but they’re being mean. The problem is not caused by autism. The problem is caused by them being wrong about how to treat you.

These three posts about dealing with people being mean to you might help: “You’re ok, they’re mean.”, Learning self respect, and When people you love are mean.

I’m sorry you’re dealing with this. It’s an awful situation to be in. I hope that some of this helped.

monochromatically:

realsocialskills:

I have a friend with depression who frequently cancels plans or doesn’t message me back, and even though I know it’s because she has a limited amount of emotional energy and not because she doesn’t care about me, I end…

monochromatically said:

This is really spot on!

As the “Debra” in a similar situation last year, I’d say that actually discussing the emotional hurt in a non-confrontational, calm manner is an excellent way to work out new levels of expectation in the friendship.

My friend used to always make plans and want to meet up every day for “girly” best friend activities i.e. shopping trips, dinners out & spa outings. None of which I could find the energy for when my depression was at its worst. Our friendship really suffered. She felt like I was trying hard enough for the friendship and that I was being a bad friend. I felt that she wasn’t trying to understand what I was going through and not being very understanding/ listening to me.

Basically, what I’m trying to say is that communication is really important. Sometimes, planning events that don’t take much energy is a good way to still hang out ~ make outings that are close by, easy to get to, and not too long. Maybe try to message her and ask if you could come over to her house for a cup of tea etc. Keep it short and simple, and most of all, communicate clearly.

realsocialskills said:

Yes, communication is important.

It’s also hard. Because sometimes, people think they’re communicating about the problem when what they’re really having is more like this conversation:

  • Cathy: It really hurts my feelings when you can’t do things you’re incapable of doing right now
  • Debra: I’m sorry. I’ll do those things. I don’t know why I don’t. I’ll be a good friend now that I know how much it’s hurting you.

And that conversation just make everything worse, particularly when it happens over and over. 

A conversation that would be better:

  • Cathy: It really hurts my feelings when we make lots of plans that you don’t keep. I feel like you don’t care about me when that happens. Can we figure out a different way of doing things?
  • Debra: I really wish I could still make plans and do those kinds of things, but I can’t do that right now. What if we hung out more online?

tl;dr Talking about feelings can backfire. Feelings are not always the primary problem. When there’s another problem, it’s important to talk about that problem as well as or instead of hashing out feelings.

On "feeling unsafe"

Sometimes, people in power use “feeling safe” in a manipulative way. They shift the conversation away from whether or not you actually are safe, and into a conversation about your feelings. Sometimes people in power who do this have a kind affect and seem to really care about helping you to feel better. This can make it hard to know in your own mind what the problem actually is, and hard to keep hold of your understanding that something is wrong and needs to be addressed.

It helps to keep in mind that these things are different:

  • Feeling unsafe in reaction to something even though you actually are safe
  • Seeing something as evidence that you are actually unsafe
  • People in power will often try to confuse you about which thing you are experiencing, but it’s important to stay mindful of the difference.

It’s also possible to have a feeling that you are unsafe, and not be sure whether it’s reasonable or not:

  • It’s important to take that feeling seriously
  • And to think through what it means, and whether there might be a real danger
  • Sometimes when you feel unsafe it will be an irrational reaction, but don’t be quick to dismiss it as one
  • If you think it’s an irrational reaction, make sure you have a concrete reason for thinking that it’s irrational and that things are actually ok

People can feel unsafe around someone for all kinds of reasons other than being unsafe:

  • Being bigoted against another group (eg: racist fear of black people)
  • Being triggered by something (eg: feeling afraid because seeing men wear hats is triggering)
  • Forgetting to take medication and having strange reactions to things as a result 
  • Taking a new medication with unexpected side effects that complicate your ability to perceive things accurately  
  • Misunderstanding something someone did or said (eg: taking something literally that was not intended literally)
  • Hallucinations
  • Being exhausted
  • When it’s this kind of thing, sometimes the external situation still needs to be addressed, but often it can be dealt with by processing things yourself 

But sometimes the problem is that you’re *actually not safe*, and sometimes this is in ways that it’s hard for other people to see, eg:

  • If you are being pressured to share private information with people who can’t be trusted to keep things confidential
  • If you are being pressured to use a ramp that is too steep to be safe, or allow people to carry you into an inaccessible building
  • If people around you are bigoted against you in subtle, but constantly corrosive ways
  • If people are intentionally triggering you in order to confuse and disorient you into doing what they want
  • If you’re being triggered in a way that makes it impossible for you to understand what is going on well enough to keep yourself safe, even if no one is doing it on purpose
  • If there is no food available that you can safely eat for an extended period
  • If you are experiencing executive functioning problems in ways that make it hard or impossible for you to do things that are necessary for survival, and no one is willing to help you
  • If you’re spending a lot of time in a environment is physically overloading in painful ways
  • If you have medical problems and doctors refuse to communicate in a way you can understand, or if you only have access to them in an environment that prevents you from communicating
  • and any number of other things

All of these things are the kind of thing that apparently well-meaning people will often try to address by trying to get you to process your feelings so that you will feel safe. That’s a dangerous reaction, and it’s important to notice when people are doing it, and to learn how to insist that they address the actual safety issue.

Sometimes the feeling is the problem.

Sometimes the problem is that you’re *actually not safe*.

If someone’s trying to manage your feelings rather than the actual threat to your safety, it’s important to remember that they’re doing a bad thing. And that it’s ok to want to actually *be* safe, even if all they want to do is make you *feel* safe. 

Cooperation with feelings derails is one of the hardest anti-skills to unlearn. But it’s also really, really important.

Identifying bad friends

How to weed out bad friends?
realsocialskills said:
Here are some rules of thumb:
Good friends are people you like. If you’re trying to figure out whether you like someone, here are things to keep in mind:
  • Do you like being around them? Is interaction with them usually pleasant?
  • How do you talk about them when they’re not there? If most of what you say is a complaint of some sort, you probably don’t actually like them very much
  • It’s ok not to like people
  • But if you don’t like someone, it’s probably better not to try to be their close friend or spend lots of time with them
Good friends are people who like you:
  • Does this person enjoy your company?
  • Do they respect you when you’re there? If most of what they say is insulting, they probably don’t like you.
  • If they make a lot of jokes at your expense that hurt you, and mock you if you tell them to knock it off, they probably don’t like you very much
  • If they act like they’re doing you a favor by being your friend, they probably don’t like you very much
  • Life is a lot better when you surround yourself with folks who like you, and minimize entanglements with people who don’t
Good friends don’t creep on each other:
  • People who insist on touching you in ways you don’t like probably aren’t very good friends
  • People who won’t stop hitting on you or making sexual comments probably aren’t very good friends
  • People who insist on talking to you about explicit sexual topics you aren’t comfortable hearing about probably aren’t very good friends.
  • People who make a lot of explicit comments about your sex life or sexual desires without caring whether you want to discuss that with them aren’t good friends
  • In some social circles, you might come under tremendous pressure to laugh this kind of thing off
  • But it’s not ok, and life is better when you don’t tolerate it, and when you are able to create a social circle of people who don’t tolerate it
Good friends understand that you have a life outside them:
  • Friends aren’t always available when friends want them to be, because they have a life and other things that matter
  • Good friends understand that you spend time with other people, and have emotionally significant relationships that they aren’t part of
  • They also understand that you have other things you need to attend to, such as work, school, taking care of your health, etc
  • And they don’t treat it as an offense against them when you spend money on yourself, even when you’re buying something they wish they could afford but can’t
  • Friends who expect to always unconditionally come first in your life are not good friends. (Even if they think they put you first. Even if it’s true, but it usually isn’t.)
Pay attention to your feelings:
  • If you feel horrible about yourself every time you see someone, it’s probably not a good friendship
  • If how you feel about someone changes a lot, there’s probably something really wrong. It might be fixable, it might be possible to work around it, but it’s important to figure out what it is
  • If how you feel about someone is dramatically different when you’re with them than when you’re not, something is wrong and it’s important to figure out what it is
  • For instance, if you consistently dread hanging out with someone, but enjoy it when you do, something is wrong (it might not be a problem with them, it might be social anxiety or something else. But it’s important to figure out what’s going on)
  • And when you swear up and down that you like someone, but you also avoid them and don’t feel good when you spend time with them, you probably don’t actually like them as much as you think you do. Even if they have really great qualities.

Sometimes it’s not a bad friend. Sometimes it’s a bad friendship that can be improved by renegotiating boundaries:

  • For instance, some people are good to spend time with, but not good to spend tons of time with. Captain Awkward has a good post on small doses friends
  • Some people act dramatically different in public than in private. Spending time with them mostly or entirely in the setting you like them in can make the friendship a lot better
  • Some people are nice to interact with in person, but not online, or vice versa. Being someone’s friend doesn’t mean you have to discuss politics with them on facebook, or that you have to engage with their derailing comments on everything you post. Similarly, talking to someone online doesn’t mean you have to go to their noisy parties
  • Some friendships aren’t really personal relationships so much as alliances in which you trade favors. That’s an ok kind of relationship to have, so long as it’s actually equal and not exploitation. Trying to convert an alliance into a close friendship tends to end poorly though, especially if only one person wants that
 

Words like “bully”, “tease” or “abuse” are labels. Then someone can say “No, it isn’t!” because it doesn’t match the images in their mind. I think it’s better to describe what happened in terms that can’t be disagreed with, and to describe your own feelings, which others aren’t really in a position to disagree with. For example: “He stood close to me. I felt intimidated. He mentioned my disability in a sing-song voice. I felt humiliated. He struck me, and I could still feel it 30 minutes later.”
realsocialskills answered:
I think it’s important to have a way of talking about these things that isn’t just a matter of subjective feelings.
Because feelings can be wrong, or at least misleading. A bigot can feel humiliated by seeing someone they as subhuman being treated as my equal. A racist can feel intimidated by the presence of a person of color. In that case, the problem is that someone is a bigot or a racist. If they change how they think, they’ll feel better.
In contrast, if someone is experiencing injustice, the solution is for the injustice to stop. And it’s ok to oppose injustice by saying “this is wrong”; you don’t have to soften it by making it about your feelings.
Humiliation feels the same whether or not anyone is wronging you - you have to think about what’s going on and get a lot right to be able to figure out what to do.
Understanding the actual situation matters.
Push come to shove, it matters what’s true, and that’s not always a matter of feelings.
If we want to stop bullying, we have to be able to use words that acknowledge that people actually are bullying others. We can’t just focus on the fact that people feel bullied.