Social skills for autonomous people
I wanted to share one thing with you, one story about how what you write online flipped my impression of autistic people around. I know a kid with Down's syndrome, and his parents have friends with an autistic kid who is an incredible artist. We were working on a project and they suggested using the kid's paintings. I said 'Awesome, if he wants to, that would be great'. And they said 'Oh, no, he's so autistic, there's no point even asking him, he won't understand.' 1/3
Anonymous

dephinia:

youneedacat:

2/3 And I thought, wow, weird, but ok, they know this kid, they deal with developmentally disabled kids every day, they know better. And I didn’t think about it much. But then I read what you wrote about understanding, but not being able to respond. And it blew my mind. I thought of that kid, and how maybe asking him would have made perfect sense, because even if he can’t respond, that doesn’t mean he doesn’t get to be asked,

3/3and it doesn’t mean he doesn’t get to at least know what people want to do with his art. Even if he doesn’t have the capacity to voice his opinion about it. Thanks for writing about the way you do and don’t communicate, and explaining that lack of communication doesn’t equal lack of personhood or awareness. I will know that next time something like this happens, and maybe it will make a difference to the DD person it concerns.

Wow I’m seriously happy that people are asking him.

Something that made me cry, later, when I was capable of crying:

Sometimes I’m incapable of showing a single signal that I am aware of anything.  Nothing.  Not with my eyes, not with anything.

Normally, I’m accustomed to even people who know me, treating me different.  At least, their manner of talking to me and their voice changes, they get nervous.  At most…  I get to learn what they really think of me, because they talk about me as if I’m not even there, including complaining about me in terms that made it 100% clear that they would not say this if they thought I was present there with them.

So I was at AutCom and I’d just given a presentation.  It was super-crowded — the AutCom conference, 3 weddings, and a Bar Mitzvah, going on all at once in this hotel.  I had a killer migraine and I was overloaded and I’d just gotten through my presentation, which I’d given by lying on the floor writhing because I couldn’t get up.  One of those days.  When it was over, a bunch of us autistic people (all nonspeaking normally), all went out into the hall in various stages of shutdown.  Larry Bissonette was pacing.  I was leaning up against a wall and I couldn’t move or even focus my eyes or move my eyes in any way.

I love Sandra Radisch’s writing and I wish I’d had a chance to meet her when either of us was more communicative.  But her staff person came up to me to tell me what my presentation meant to her.  And she did not bat an eyelash, she did not change her way of speaking to me in the slightest, she talked to me as if she was talking to any random person, even though I had no prayer of even blinking my eyes in response to her at that point.

And that meant more to me than you could believe.

If this child gets talked to respectfully and as if people expect him to understand, then he will understand.  He may or may not understand the words.  There is no way of telling even whether a very verbal person understands the words.   He may understand every word said, or none, or it may vary day to day.  

But at minimum, he will understand what it means to be spoken to respectfully — people with receptive language problems tend to do better at picking up on emotional content like that, so if he doesn’t understand the words, he will doubtless understand the intent.  And he will begin to expect to be asked.  He will expect respect.  And when respect is not given, he will react badly.  And that is the beginning of self-advocacy for people with very severe communication impairments.

But he will also possibly remember the first time he was ever asked, for the rest of his life.  When nobody ever asks — it means the world.  It meant the world to me, and I’m nowhere near in the position of being underestimated as thoroughly as this boy is.  Talk to him. Include him.  Ask him things.  Talk even if you expect no response.  It will mean something to him.  It could mean everything to him.

"lack of communication doesn’t equal lack of personhood or awareness. "

^THIS, y’all.

We place so much emphasis on verbal communication that we forget that:

1) loudest does not equal right
2) most articulate/verbose does not equal right
3) there are other ways of communicating
4) which are no less valid
5) if someone has difficulty communicating in a typical or expected way that does not make what she/he wants to communicate invalid or unimportant
6) our lack of capacity to listen/understand does not equal lack of value/importance of the message!!

Listening and awareness are skills that must be practiced and developed as much as talking, and yet we learn so many anti-listening skills. LISTEN.

realsocialskills said:

Yes. And also, if you see others involved in someone’s care write that they “have no communication”, it’s particularly urgent to figure out ways they communicate and document them.

Even if you’re not sure. Even if they’re ambiguous. Document that. Eg “Bob says infrequent and hard to interpret words.” or “Bob waves his hand in response to questions”.

The consequences of being seen as incapable of communication can get really horrible really quickly, so if you’re in a position to counter that, do so.

reblog
What the autism spectrum is and isn’t.

blaiyrwitch:

Social skills: noticing when repetition is communication

realsocialskills:

So there’s this dynamic:

Autistic person: The door is open!

Other person: I *know* that. It’s hot in here.

Autistic person: The door is open!

Other person: I already explained to you that it’s hot in here!

Autistic person: The door is open!

Other person: Why do you…

blaiyrwitch said:

It’s important to also stress that Autism is a spectrum, ranging from extreme cases with non-verbal beings, and those who have very mild Aspergers. The key no matter what is patience.

realsocialskills said:

Sort of, but the way you put it is misleading. Patience is important, but it’s not enough. You also need knowledge. 

One piece of knowledge that is vital: All autistic people are disabled in significant ways, and it’s not always obvious how. There are a lot of stereotypes, and they’re misleading.

For instance, some nonspeaking autistic people have significantly better language comprehension than some autistic people who speak. (And you can’t tell from affect either: A student who spends all day rocking in a corner might be understanding significantly more than a student who spends all day sitting still at a desk.)

There are a number of things that go into autism. It’s a combination of impairments in cognition, communication, sensory perception, and movement. They combine in different ways.

They can also change over time, or in times of stress.

Someone you think has “very mild Aspergers” may well have no ability to understand language when they’re upset. They may be physically incapable of walking across a crowded room. They may have very little voluntary motion and be dependent on prompts in their environment.

Not all autistic people do the thing I’ve described in this post. (And not all autistic repetition is for this reason). But it has nothing to do with severity. When an autistic person repeats the same thing over and over in a conversation with you, it’s very important to consider the possibility that they’re trying to communicate something but don’t currently have the words to get you to understand. This is true even if they live alone and five minutes ago they gave a complicated lecture on physics.

reblog
You are not alone

bessibels:

youneedacat:

realsocialskills:

If you are being hurt by a person, they’re likely trying to convince you that no one else could possibly understand your relationship.

If you’re being hurt by your family, they’re likely trying to convince you that no one else could possibly understand your family.

If you are being hurt by a community, they’re likely trying to convince you that no one from outside the community can possibly understand.

It’s not true. You are not alone. There are others outside your relationship, family, and community, who can relate to what you’re going through and who can help.

Some aspects of your relationship, family, or community are unique. Some of them are probably unusual, positive, and hard for outsiders to understand. But that is not the barrier that those who are hurting you want you to think it is. It is not insurmountable.

People do not have to understand absolutely everything in order to relate to your experiences in important ways.

You can make connections with others, and a lot of things you have experienced will be very, very similar. Some aspects of abuse are universal. Others are very common. (One very common aspect of abuse is that there is often something about the relationship that is positive, unusual, and secret or hard to describe.). 

The people who you can relate to may be very different from you in a lot of ways. They may be a different age, ethnicity, religion, race, gender, or culture than you. Maybe they are disabled and you aren’t. Maybe their disability is different, or more severe, than yours. Maybe the particular horrors they faced took a different shape. That matters, but it’s not the only thing that matters.

It is ok to relate to the experiences of people who are very different from you. It is not appropriation. (It is not ok to pretend that your experiences are identical; but it’s completely possible to relate without doing that.) Don’t let anyone tell you to only listen to people who are just like you. We all need each other.

People may be trying to isolate you, but you are not alone. Other people can and do understand and care about the ways in which you are getting hurt.

youneedacat said:

I think this is one of the most harmful things about the flagrant misuse of the word ‘appropriation’ that I’ve seen flood through tumblr.  Like, “It’s appropriation if you flap your hands and you’re not autistic.”  As if autistic people have a secret cultural patent on hand-flapping.

But seriously — this fear of identifying with each other is toxic.  It’s far more toxic than the occasional overidentification is.  Overidentification can be plenty bad, and I dislike it as much as anyone does.  But.  What I see happening on tumblr and other places that adopt this attitude, is people getting pushed apart.

People getting pushed apart needlessly.  Because people are afraid to identify with each other’s experiences for fear of being ‘appropriative’.  (Which isn’t even what real appropriation looks like.  Real appropriation is horrible and awful and nasty, but it is not the same as identifying with someone different than yourself.  I keep wanting to say, “You’re appropriating the word appropriation.”)

And I think even in activist contexts this gets things screwed up.  It prevents solidarity among people with similar experiences.  It prevents people from different oppressed groups from comparing notes and learning from each other.  Because everyone is so afraid of accidentally stepping on each other’s toes that they won’t get within ten feet of each other, that’s how ridiculous it’s getting.

And yes — it also screws things up in contexts where a person is being abused and needs help but is afraid to identify with the experiences of other people.  I know that’s the main topic.  But I wanted to address it in terms of activism too because there’s a serious parallel thing going on there.

It’s just… it’s all so wrong, and all so toxic, and I can see what made things go bad in this direction, but I can’t see how to fix it.  Other than setting out little packages with bits of truth in them, like I’ve talked about.  Like the original poster did.  Like I’m doing now.  And then people can find the packages and read them and decide for themselves what to think about them.

bessibels said:

This also goes to the feeling of “I don’t deserve help because there are people who have it so much worse.” I think people who already have a tendency to feel unworthy and undeserving of good things sometimes wind up using anti-oppression rhetoric in the service of their own self-loathing. Part of that is isolating yourself from people you could have a bond with because you think you don’t deserve to identify with them or benefit from that connection.

reblog
So I fell in love. I had a very clear idea about the temporariness and ubiquity of it. And I liked that version where it’s special because of how it makes you feel but not-so-special because it often reaches an end, nevertheless its memory intact and treasured. Until, I fell in love. The guy lives in an other city and so we tried but he ended it because it was just ‘impractical’; very less chances of us every meeting. I get it. It was the right decision. But I can’t get over it. He is my THE ONE
realsocialskills said:
 
He’s not your The One. He is not yours. He is his, and he does not want to be in a relationship with you.
  
It sounds like you think that this man is the only person you can ever possibly love in that way. I don’t think that’s true. He’s probably not the one exception to your general principle that you should avoid getting too attached. It sounds to me like you found out through getting close to this guy that you actually do like to fall in love and be attached. It sounds like you found out that you want something different than you thought you wanted, but that you’re treating this as something you found out about your ex rather than something you found out about yourself.
    
Breakups are usually awful, and they are particularly painful when you really love someone and wish you could still be with them. It’s normal to feel awful because a relationship ended that you wanted to continue. It doesn’t mean you’ll always feel this bad, or that you can never feel this way about anyone else. This is survivable, and it gets better.
   
Push come to shove, being with someone who doesn’t want you anymore is a lot worse than being alone. It’s corrosive. It wears you down. You can’t make him want to continue the relationship, but you can get past this and find someone else who does want to be with you.
   
You learned something important about yourself from this relationship. You learned that you can fall in love, and value a relationship enough to care about it lasting. That’s a good thing to know about yourself. It will make it much easier in the future.
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Listening to people who have disability accents

cicero-of-cyrodiil:

realsocialskills:

mzminola:

realsocialskills:

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter).

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people. 

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)

mzminola said:

I’d like to add that “finding an interpreter” is not necessarily the only option, or even always most effective option, assuming “an interpreter” = “another human”.

If speaker and listener both have reading & writing skills in the same language (or even if just the speaker can write and the listener can read) then the two can communicate in writing, and not have to involve a third person.

If at least one has an Augmentative & Alternative Communication (AAC) device, then that could sometimes be used too.

I work in retail and have auditory processing difficulties. With customers and coworkers who share my dialect of English, I still find myself asking for repetition, or re-wording. Recently, I had to ask a customer who needed an item placed on hold to repeat herself about five times, as our interaction was over the phone, and there was too much background noise on both our ends.

When I get customers who do not share my dialect of English (speaking a dialect from a distant part of United States, or who have English as their second language) the amount of repetition/re-wording needed increases. If there is no assistance available to the two of us, I will lead the customer to the part of the store I think contains what they’re searching for. If I have misunderstood them, they tell me, and we try to find more descriptions and alternative phrasing, until either we do find what they need, or rope in more coworkers, or traverse the whole store and find that we don’t carry what they seek.

In the case of English-as-second-language customers, many do bring their own interpreter, often a relative, and between the three of us, a similar process as the above goes down, but much faster.

Highly effective are the customers who bring a smart phone, tablet, or other AAC device; computer-translated vocabulary isn’t always as exact or nuanced as needed, but it eliminates auditory processing issues from the equation, and the customer is also able to show me pictures.

Customers who share my dialect and have no noticeable disability accent also benefit from bringing AAC devices with them shopping, because if they can access the store’s website and find the product code, we can search our inventory, something we’re not able to do with just a description/name. Or they show me pictures of what they want, and while we might not have the same product, I can find them something similar. Corporate encourages use of such tech, offering coupons/sales/discounts through multiple platforms.

Summary of my thoughts: human interpreters are one of many  communication options, alongside writing, computers, etc. Which will be the most effective or practical varies contextually.

realsocialskills said:

Thank you for the important points you’ve added.

cicero-of-cyrodiil said:

You can have a receptive language difficulty?

realsocialskills said:

Yes, absolutely. It’s a cognitive issue that’s fairly common in autistic people. There are also auditory processing problems that can interfere with understanding speech (which are cognitive, not a problem with the ears). They are not the same thing, but have significant overlap (and a lot of people have both).

That’s one reason that some people need symbol support to be able to use AAC, and a reason that some people who are not deaf need captions to be able to understand TV. (And any number of other things).

reblog

iguanafish replied to your post “Anonymous said: Is it rude to wave your hands in front of…”

Option 3: this is someone whom this is happening to and they want validation that it’s wrong. That’s one reason this could “even” be a question.

realsocialskills said:

It didn’t sound that way to me, but that possibility is part of the reason I explained personal space first. I think you’re right that I ought to have taken that possibility into account more explicitly than I did though.

So here’s an answer, if that was the question:

No one has the right to wave their hand in your face, especially if they know you don’t like that. (Unless you’re their caregiver and you’re neglecting them in dangerous ways and that’s the only viable way they  can get your attention).

People who insist on putting their hand in your face are being mean. They’re not doing it because of your body language or your disability, they are doing it because they are mean. You’re ok, they’re mean.

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Is it rude to wave your hands in front of someone’s face or push your face in front of their eyes when they tell you not to that because they’re staring through you?

realsocialskills said:

Yes, it’s rude. It’s beyond rude. It’s a violation, and it’s important that you stop doing that.

I’m not sure why this is even a question. I’m guessing a couple of different possibilities:

Possibility number one: you’re a person with a disability, and you’re confused by the concept of personal space.

Personal space is a bit hard to explain. It’s kind of along the lines of this:

  • Bodies are private
  • People shouldn’t touch you without permission, unless there’s an emergency (eg: you’re about to walk into traffic)
  • If people need to touch you and they don’t understand your communication, they should still explain what they’re doing and why they’re doing it
  • And they should still try to ask, and explain that since they don’t understand, they’re having to make guesses
  • The space close to your body is kind of like part of your body, for this purpose
  • No one should be putting things very close to you, or putting their hands in your face, or putting their face very close to yours, unless they have a strong reason to believe that you agree to this
  • You shouldn’t be doing this to other people either. Because their personal space is theirs, and it’s up to them whether or not they want to invite you into it

Possibility number two: you’re a person who works with people with developmental disabilities, and you don’t yet realize that people whose communication and affect is different than yours are as entitled to personal space as you are.

This might be because you don’t realize that atypical communication is communication. Or because you think people need to be normalized to be ok. Or because you think a disabled affect is rude, and that you are entitled to force disabled people to be polite to you. Or any number of other things. I’m not sure what to say about that, except that you’re being rude and invasive and that you should respect personal space and boundaries. 

Some people can’t listen and look at your face at the same time. That doesn’t mean they’re not listening.

Learn to figure out other indications of their attention.

Learn other ways of getting their attention that they’re ok with.

Also: When someone you support is not paying attention to you, consider the possibility that they might be correct not to. They might be ignoring you because you are demanding their attention in circumstances in which it is unwarranted and invasive. People with disabilities have the right to stare into space during their free time without a staff person interrupting and making them interact. 

Be careful about demanding attention when you want to teach, too. If you’re their staff trying to put them on a program teaching something, and they’re ignoring you, they may well be right to. Adults get to decide that they don’t want to learn something. (And, in a lot of circumstances, so do children. If a child isn’t making any choices at all about what they’re doing with their time and what they’re learning, something is wrong.)

tl;dr Don’t wave your hand in front of someone’s face, especially if they’ve told you not to. It’s degrading and mean.

reblog
Listening to people who have disability accents

mzminola:

realsocialskills:

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter).

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people. 

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)

mzminola said:

I’d like to add that “finding an interpreter” is not necessarily the only option, or even always most effective option, assuming “an interpreter” = “another human”.

If speaker and listener both have reading & writing skills in the same language (or even if just the speaker can write and the listener can read) then the two can communicate in writing, and not have to involve a third person.

If at least one has an Augmentative & Alternative Communication (AAC) device, then that could sometimes be used too.

I work in retail and have auditory processing difficulties. With customers and coworkers who share my dialect of English, I still find myself asking for repetition, or re-wording. Recently, I had to ask a customer who needed an item placed on hold to repeat herself about five times, as our interaction was over the phone, and there was too much background noise on both our ends.

When I get customers who do not share my dialect of English (speaking a dialect from a distant part of United States, or who have English as their second language) the amount of repetition/re-wording needed increases. If there is no assistance available to the two of us, I will lead the customer to the part of the store I think contains what they’re searching for. If I have misunderstood them, they tell me, and we try to find more descriptions and alternative phrasing, until either we do find what they need, or rope in more coworkers, or traverse the whole store and find that we don’t carry what they seek.

In the case of English-as-second-language customers, many do bring their own interpreter, often a relative, and between the three of us, a similar process as the above goes down, but much faster.

Highly effective are the customers who bring a smart phone, tablet, or other AAC device; computer-translated vocabulary isn’t always as exact or nuanced as needed, but it eliminates auditory processing issues from the equation, and the customer is also able to show me pictures.

Customers who share my dialect and have no noticeable disability accent also benefit from bringing AAC devices with them shopping, because if they can access the store’s website and find the product code, we can search our inventory, something we’re not able to do with just a description/name. Or they show me pictures of what they want, and while we might not have the same product, I can find them something similar. Corporate encourages use of such tech, offering coupons/sales/discounts through multiple platforms.

Summary of my thoughts: human interpreters are one of many  communication options, alongside writing, computers, etc. Which will be the most effective or practical varies contextually.

realsocialskills said:

Thank you for the important points you’ve added.

reblog

iguanafish replied to your post “Listening to people who have disability accents”

is this an appropriate time to say “i’m so sorry” wrt struggling to understand someone, or does that come off as condescending? i don’t hear very well (or very fast, i guess, auditory processing thing) and i have the worst time with all accents

realsocialskills said:

I don’t know. What do y’all think? 

reblog
Listening to people who have disability accents

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter. EDITED TO ADD: I got this part somewhat wrong, and someone reblogged it with an important addition).

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people. 

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)

reblog