autonomy

Thoughts on doing right by nonspeaking people

Anonymous said to :

I thought your post about kids with autism was great… but tbh I feel like a lot of autism resources ignore autistic people who are less self aware? For example, my sister, who has autism and is unaware of it + cannot speak… where are the resources that apply to her?

How can I help and support her? I feel like people with autism like her are frequently ignored in these kinds of posts.

realsocialskills said:

Several things:

Remember how much you don’t know:

  • You can’t really say definitively that your sister isn’t aware of autism
  • There is no reliable way to assess receptive language in someone without reliable expressive communication
  • Ie: You know that your sister can’t talk; you don’t know what she understands
  • Some tests can show that someone *does* understand language, but they can never show definitively that they *don’t*
  • Your sister may understand language; she may not. There’s no reliable way to be sure
  • It’s important to keep both possibilities in mind
  • Dave Hingsburger wrote a couple of good posts about interacting with nonspeaking people who may or may not understand language here and here

Keeping in mind the possibility that she understands language (or that she might be able to learn how to use language):

  • Talk to her like she understands
  • Tell her about things you think she might want to know (including autism)
  • Tell her that you can what she thinks, and that you know she might understand you
  • When you make choices related to her, explain them to her
  • Tell her what’s going on and what’s going to happen, whether or not she demonstrates understanding
  • Have books around about things she might want to know about
  • Turn the TV or radio to things you think she might be interested in
  • If she’s a child, put her in educational settings in which she’s hearing lessons on grade-level material, whether or not she’s able to demonstrate comprehension
  • Keep trying for communication support

Regarding communication support:

  • There are a *lot* of different things to try
  • A month-long trial is not long enough to determine whether a communication strategy will work for someone
  • Some people can use a system right away; some people need months of being shown how it works and experimentation before they can use it
  • You don’t have to use simpler systems before you can do more complex things
  • One of the things you should try is a high-tech AAC system based on core vocabulary.
  • Speak For Yourself has some advantages over most other systems (including that they have good resources for people supporting family members without much professional support)
  • This is a good post on the importance of trying things, with some suggestions of things to try. (It’s written by a parent of a young child, but it’s also relevant for people supporting older children or adults).
  • Human-supported systems like a PODD book work better for some people
  • Signed languages like ASL work well for some people
  • The Rapid Prompting Method works for some people nothing else works for. (It’s particularly effective for people with severe apraxia or severe attention problems.)
  • Multi-sensory systems like Makaton also work for some people (but systems that allow for more open forms of communication are better)
  • tl;dr There are a *lot* of approaches to supporting communication, and it’s important to keep trying to find one that will work for her

Keep in mind the possibility that she does not understand language, or that she needs help understanding it:

  • She might not understand words
  • She might need pictures or symbols to help her understand words
  • She might need simplified language (but don’t make *everything* simplified, because that might not be what she needs. It’s a guess)
  • Whether or not she understands language, she does think, and her thoughts matter
  • She likes and dislikes things, and that matters too
  • (Self-awareness and language aren’t the same thing)

Make room for stuff she cares about:

  • If you think she likes, cares about, or is interested in something, find ways of making that thing available to her
  • Even if it’s things like watching the same clips on YouTube over and over, or spinning things.
  • If those things are important to her, then they’re important
  • Create opportunities for her to try new things. (Not forced. But like, offer her different kinds of food and books and stuff to watch on TV and places to go.)
  • Let it be an end in itself
  • Don’t make everything she likes into therapy
  • And *especially* don’t make everything she likes into a reinforcer to get her to do what you want
  • She has the right to like things, be interested in things, and have time that is her own

Help her to find a peer group:

  • If she doesn’t know any other autistic people, that’s a problem
  • If she doesn’t know any other nonspeaking people, that’s a problem
  • If the only time she spends with other disabled people is in tightly regimented special education or therapeutic settings, that’s also a problem
  • It’s important for disabled people to have the opportunity to meet and interact with other disabled people
  • This is particularly important for disabled people whose communication is thoroughly atypical.
  • Eg: there may be other autistic people who readily understand her body language
  • Not all disabled people will be friends, and it’s important not to force it
  • It’s also important to create opportunities
  • (And to make sure she’s seen pictures and videos of other people who look like her.)

Find ways of listening to her:

  • Whether or not she uses language, she’s communicating some things in some ways
  • Find ways of listening to her
  • Pay attention to what she does, and how she’s reacting to things, and what you think she might mean
  • (Do keep in mind that you’re guessing — it’s easy to misunderstand nonverbal communication when someone has no words or unambiguous symbolic gestures to correct you with).
  • Tell her, through words and actions, that you care about understanding what she’s telling you
  • Eg: Say explicitly things like “I think you are trying to tell me something. I’m not sure what you mean, but I’m trying to understand.”
  • Then when you think you know what she means, don’t ignore it; act on it
  • Whether or not she understands your words, it’s likely that saying them will help her to understand that you care. (It will also remind you to care).
  • The more you work on listening to her, the more often you will understand her communication

Creative arts therapists might be helpful:

  • Some creative arts therapists (particularly music therapists) do good work with nonspeaking people
  • They can often find expressive and receptive communication that others don’t find
  • They can also help to figure out what someone likes
  • (Make sure the person you go to isn’t also a behaviorist. Behavior therapists are not good at this and they tend to cause other problems).

Share what you know about her communication:

  • If others think she doesn’t communicate, tell them what you know or suspect about her communication
  • Sometimes they will use what you tell them to communicate with her
  • Even if they don’t believe you, the fact that you think she communicates will often make them treat her better

Don’t make decisions for her that she can make for herself:

  • eg: If she understands what clothing is and can pick a shirt, don’t decide for her which shirt to wear
  • If there are different kinds of food, don’t pick for her; ask her what she wants
  • If she’s in a social setting with other people; don’t prompt her into interacting with particular people. Being nonspeaking doesn’t make you the boss of her social life.
  • Just generally, don’t script everything. Respect her space and see what she initiates and chooses.
  • And if she needs help choosing, don’t take over; offer support
  • Eg: If she’s overwhelmed by the number of shirts she has, try picking up two and asking which one.

tl;dr If someone doesn’t speak, it’s important not to assume they’re unable to understand language — and also important not to assume that they do. In either case, it’s important to listen to them, speak to them respectfully, work on finding ways to support their communication, make room for their interests, and respect their decisions.

I’m going through a breakup and am dealing with pretty crippling anxiety and depression despite the fact that my ex and I didn’t end on bad terms. I am a very socially awkward normally and my ADHD sometimes causes me to act impulsively. I have three questions: 1.) How/when/who is it appropriate for me to discuss my problems with (Like when people ask how I’m doing I normally lie but I think that may not be good for me.) 2.)How long should I wait before spending time with my ex, seeing him is like tearing off a band-aid and 3.) What is a good way for me to cope with my loneliness when my social anxiety prevents me from being able to be around most people?
Realsocialskills answered:
A few thoughts:
First and foremost, there is no one solution to this problem. You’re going to have to slowly find ways of making your life better. You’ll probably feel better if you think of it that way.
I get the sense that you might be thinking of the problem as “How do I get over my ex, stop being so impulsive, not be depressed, not be anxious, and not be so isolated, so that everything will be ok?” That’s a really overwhelming problem, but it’s not actually the problem you have to solve. The problem you have to solve is “What things can I do to start making my life better?”
And there are a lot of things that might be worth trying, and other things worth avoiding. I’ll start with the things I think you should avoid:
Don’t rely on your ex for emotional support:
  • It’s not good for either of you
  • Part of what being broken up means is that you need to separate emotionally and regain your own space
  • Relying on your ex for emotional support makes it damn near impossible to do this
  • Especially if you don’t have much else in the way of support
  • It is not your ex’s responsibility to make your life ok post-breakup
  • It’s probably not a good idea to spend time with your ex until you’re past the point of the breakup feeling like an excruciating loss when you see them

Respect other people’s boundaries:

  • Someone asking you how you are isn’t necessarily an invitation to share
  • “How are you” is usually a fairly meaningless socially greeting.
  • Sometimes people ask because they are concerned and really want to know. These are usually people you are already close to, or people you’re related to.
  • If you’re not sure whether they really want to know or if it’s just social noise, you can say “It’s kind of hard right now” or something similar, and see if they ask follow up questions
  • If they ask follow up questions, it’s usually ok to tell them what’s going on
  • But keep in mind that it’s ok for people to decide they don’t want to be your support system
  • And it’s important to respect that
Meetup.com
  • Meetup.com can bee a good way to meet new people in an unthreatening way
  • It’s easier to talk to new people when you know that you share an interest and are gathering to talk about it or do something
  • It’s also often ok to go and listen to other people talk
  • And it’s ok to leave if you need to

Interacting with people on the internet

  • A lot of people who can’t interact easily in person get a lot of social interactions from Tumblr
  • This counts as social interaction. Don’t devalue it
  • It also might help to seek out some other type of forum, like a message board about your interest/fandom/whatever
  • Email lists can be good too, especially if they’re the kind that don’t have archives that can be googled
  • Even with people you know, it might be easier to interact on chat or Facebook or some other internet based way

Religion

  • If you have a faith tradition, it might help you to go to church/temple/synagogue/mosque/place of worship.
  • If you have a bad experience with the place of worship you grew up with, you might be able to find one that works better for you
  • Most communities have a number of places of worship. Some of them probably have nice people
  • Unitarian Universalist churches work for some people who don’t feel comfortable in the organized forms of the religion they grew up with, but don’t want to reject it either
  • Going to a place of worship can be a way to meet people
  • It can also be a way to be around people without having to interact too much directly
  • For some people, being near people without having much conversation can be a way to feel less lonely without anxiety-inducing pressure
  • There also might be things you can volunteer to help with that aren’t too socially intense
  • There also might be study groups that work for you, because you can talk about the topic or just listen
  • Prayer can also help some people. Talking to God can help, even if you can’t talk to people.
  • Organized religion is not right for everyone, but it can be really good for some people

Reading fiction or watching TV

  • For some people, stories are a good way to cope with loneliness
  • Reading or watching stories is sort of like vicarious social interaction
  • It can also help you to learn a bit more about people and relationships
  • There’s a reason why lonely isolated kids coping with growing up by reading novels is such a pervasive trope
  • This isn’t helpful for everyone. Fiction can be really misleading and not everyone can understand it. But for some people, it can be good.

Therapy is helpful for some people

  • Some people find it helpful to talk to a therapist
  • Sometimes therapists can help people manage social anxiety and depression better
  • Or figure out executive functioning strategies
  • Or learn appropriate boundaries that make friendship easier
  • Therapy is not a good idea for everyone.
  • For some people, it isn’t helpful.
  • For some people, it’s a matter of finding the right therapist
  • For others, it’s actively anti-helpful and damaging.
  • For some people, it’s sort of helpful but not worth the costs
  • Therapy is something that can help some people to get support that helps them to figure out how to improve their life incrementally
  • Only you know whether therapy is a good idea for you (and it’s ok to decide to stop going to therapy if you decide that would be better)
  • In any case, therapy isn’t magic and it’s not a cure. There isn’t actually such a thing as “getting help” and that fixing your life. There’s just trying things and seeing what works.

Medication can be helpful for some people

  • Anxiety, depression, and ADHD are all conditions that some people find easier to manage with medication
  • For some people, medication is useful in the short term even if it’s not good in the long term
  • Some people don’t benefit from being on medications regularly, but do benefit from having medication available for occasional use to control anxiety or panic attacks
  • Medication is not right for everyone.
  • For some people it doesn’t work
  • For some people, it works, but has intolerable side effects
  • For some people, it works, but it takes a lot of experimentation to find the right medications and doses
  • Only you can decide if medication is right for you
  • Medication is not a cure or a way to become a different kind of person. It’s a strategy for managing things that works well for some people
  • If medication doesn’t work for you, that doesn’t imply that you don’t really have depression/ADHD/anxiety.
  • It also doesn’t imply that your condition is mild
  • Or that you’re not serious about making your life better
  • All it means is that medication is not a good strategy for you

Autonomy includes the right to be wrong


Irrational people have the right to make choices.

Personal autonomy is not conditional on other people thinking that you are using it correctly.
That’s pretty much what makes it personal autonomy.
For instance, people have the right not to interact with dogs
  • Even if the only reason they don’t want to is that they have a phobia
  • Even if the phobia is completely irrational
  • Even if they would be better off getting over the phobia and learning to like dogs
  • None of this gives anyone the right to make them interact with the dog
  • That’s their business and their choice
People have the right to decide what they eat
  • Even if it’s for ridiculous reasons
  • Even if they think it’s healthy and it isn’t
  • Even if they are in the grip of food fads and think that avoiding the color blue will solve their health problems
  • Even if they’re too religious for their own good
  • Even if they’re picky
  • Even if they’re fat
  • Even if they’re thin
  • Even if they’re being overly cautious about their allergies
  • Even if they are completely, utterly wrong
  • People have the right to make their own decisions about these things
People have the right to end relationships
  • Even if they’re only doing it because of a fear of committment
  • Even if the person they’re breaking up with has all kinds of reasons for thinking the relationship is a good idea
  • Even if they’re going to regret it
  • Even if it’s a stupid decision
  • People have the right to make their own choices about who who spend time with and be close with
People have the right to choose how to spend their time
  • Even if they are wasting it
  • Even if they will regret wasting it
  • Even if they have tons of potential and could be accomplishing so much more if they just applied themselves
  • Even if they watch a lot of TV and have terrible taste in TV
  • Even if they express dissatisfaction with the choices they are making
  • People’s time is their own, and they have the right to choose how they spend it.
The right to make choices includes the right to make mistakes.

Managing irrationality

mitsukake:

realsocialskills:

  • Everyone is irrational about something
  • It’s good when you can get over irrationalities and be rational about things
  • Rationality makes it possible to understand things better, and to be more flexible.
  • This does not mean that getting over a particular identified area of irrationality ought to be an overriding priority.
  • For instance, someone who is irrationally afraid of dogs may well be better off avoiding dogs than working intensely to figure out how not to find them frightening. Overcoming a phobia is a lot of work (and can’t always be done), and sometimes it’s more work than it’s worth.
  • It’s ok to say that yes, it’s irrational, and no, fixing it is not a priority.
  • You are allowed to decide what is and is not a priority. Being irrational about something does not mean that other people have the right to jump in and take over and fix you or demand that you fix yourself.
  • Personal autonomy is not contingent on being flawless.

Also more people need to understand the incredible amount of courage it takes to overcome irrational fears, and that when people do make it a priority to overcome certain irrational fears, especially social anxieties or phobias, they are making a huge effort and other people really do need to respect it.

Yes - overcoming irrational fears can be an immense amount of painful work, and it often makes more sense to put that effort elsewhere.

Managing irrationality 

Managing irrationality 

  • Everyone is irrational about something
  • It’s good when you can get over irrationalities and be rational about things
  • Rationality makes it possible to understand things better, and to be more flexible.
  • This does not mean that getting over a particular identified area of irrationality ought to be an overriding priority.
  • For instance, someone who is irrationally afraid of dogs may well be better off avoiding dogs than working intensely to figure out how not to find them frightening. Overcoming a phobia is a lot of work (and can’t always be done), and sometimes it’s more work than it’s worth.
  • It’s ok to say that yes, it’s irrational, and no, fixing it is not a priority.
  • You are allowed to decide what is and is not a priority. Being irrational about something does not mean that other people have the right to jump in and take over and fix you or demand that you fix yourself.
  • Personal autonomy is not contingent on being flawless.