WEBVTT

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Communication among people with profound intellectual and multiple disabilities

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What is communication and how does it develop?

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Yes, well, first of all, it's a central issue,

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because it starts even before birth

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and then continues to be an issue until the end of life,

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which is a recurring theme.

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I think it's important to make it clear

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which definition of communication we're talking about.

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That you have communication,

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that you say communication information transfer.

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But that is a very abstract form of communication,

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which presupposes many aspects.

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And if you look at

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people with profound intellectual and multiple disabilities,

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they haven't gotten there yet,

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but it's about

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phases of speech development,

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until you reach this level

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communication as a means of conveying information.

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And that doesn't mean

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that this is now better or requires higher skills,

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but it is simply a path

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that has to be taken to

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to get there.

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And if you look at it,

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communication, i.e., the transfer of information, requires

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that a system of signs

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can be used on a symbolic level.

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So I assume that

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when I say something or formulate something in words,

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that certain ideas are associated with it

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and that the other person can also recall this idea

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and that we then have a consensus

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about what we are talking about.

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And that's only possible

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with symbolic understanding,

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i.e. after the first year of life.

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And before that, there are many phases of communication

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where other goals are in the foreground

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or other aspects.

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So very early on, it's about

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to relate to each other at all,

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developing an interest in another person

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and relating to each other.

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The next step is then

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for the child to learn

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I can have an effect on the other person,

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i.e. influence someone,

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in other words, to experience self-efficacy.

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And then that just develops further,

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if I do it often enough,

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then I use it in a targeted way.

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Then I have intentional communication,

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meaning that I specifically influence someone else.

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And all of that happens

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using pre-linguistic means.

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So I don't need language for that yet,

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I don't need any other symbols or signs for that,

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but it's all possible with the repertoire of body language

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and if the

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child understands that,

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then at some point language will come, or

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if speaking is not possible,

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other sign systems then come into play,

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which take on this symbolic function

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and the child then wants what

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what is most effective, and in most cases

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that is spoken language,

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if possible.

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What special characteristics do people with profound intellectual and multiple disabilities exhibit in communication?

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Yes, and from this perspective, it may be that

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that people with profound intellectual and multiple disabilities

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are in these preliminary stages for a long time

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or perhaps remain there their entire lives.

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But nevertheless, it is meaningful

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because we are social beings.

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So this relating to each other and joy.

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That's how Stern once put it.

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It's about nothing else

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than being with the other person and enjoying that.

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So that alone can, so to speak,

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that's also quality of life,

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that's one aspect of quality of life

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and that is an aspect that is simply very, very important.

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I also think it's important

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that communication

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is not just about functional communication,

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but that small talk is just as important.

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There are studies on this,

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that our form of communication,

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that is, the proportion of small talk,

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that is, essentially meaningless communication,

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but you are in contact,

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predominates over this information portion

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or this functional part.

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I want something, I don't want something.

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So this function.

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And then you also know

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that with people who have a profound intellectual and multiple disability

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often tend to be addressed

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when you want something specific.

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So it's this functional aspect.

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You want to eat with someone now, or you

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want to do this activity, or you want

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someone not to do something.

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And this small talk aspect,

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which is so important to us,

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has only been developed in recent years

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with some approaches

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or some approaches have also been developed to this end,

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that this is just as important or

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perhaps even more important and the basis

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for all other developments to build on.

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A second aspect is

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that, on the one hand, it is of course about communicating,

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that I can express myself in communication.

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The other aspect,

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which is particularly important for people with profound intellectual and multiple disabilities

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is also very important,

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is to understand what is happening.

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So that the people

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who are involved with the person

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have a very important responsibility,

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themselves as individuals,

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but also processes and situations

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predictable and recognizable.

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And that plays an important role for all of us.

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With us, it just happens in a flash,

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we see everything at a glance

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and understand and know who is standing in front of us,

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recognize someone immediately,

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recognize the situation and

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then act within that situation.

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And with people with profound intellectual and multiple disabilities

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it's just not that easy,

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because they need certain markers, so to speak, and

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first of all, their attention has to be captured.

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that takes time,

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time may also be needed

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for delayed processing,

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it's that pace again,

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that a lot of things happen much too fast and

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then it's not clear to them either,

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so even if it's the same situation,

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but maybe a different person,

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then maybe it's

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a completely new situation or vice versa.

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And they just need a lot

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lots of clues for orientation,

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just this ritualization

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and this making things recognizable through

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additional signs, signals,

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then we are already

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back to supporter communication as an input strategy,

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that this is very important.

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Because otherwise, the person is busy all the time,

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trying to figure out

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what is happening here or, in the worst case,

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yikes, what is happening to me here.

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So, tension rather than relaxation, so to speak.

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And only when that is clear, the orientation,

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then are we, so to speak, free of resources,

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actually focus on communication,

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that is, on the content aspect of communication

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and the actual exchange.

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So that you free up resources,

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when I'm working on this other point, so to speak,

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that predictability or even building expectations,

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that's also a very

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important point again for communication,

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if I can build expectations about what

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what happens,

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then I can act within the context of this situation.

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And that has a lot to do with participation.

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As long as that orientation is not certain,

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I can't really participate yet,

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because I'm still busy

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with orientation, so to speak.

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What are the consequences when a person cannot communicate in a generally understandable way?

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So every person

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who shows and expresses life activity,

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can communicate.

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Or rather, what is a very crucial point,

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is that I have to distinguish

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between partner-dependent communication and

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partner-independent communication.

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And partner-dependent communication,

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that is, that I have to interpret every statement,

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every

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and that also refers to vital expressions,

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such as breathing or heartbeat.

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Of course, it's more difficult with this subtle signal,

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but it is possible to pick up on them

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and attribute meaning to them.

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And that is what

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communication can develop from

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or how communication is possible.

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And that is always possible

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as soon as someone shows the most basic activities.

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So I would say, roughly speaking,

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that everyone can communicate,

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whether all partners can communicate independently.

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That means purposefully

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a message or purposefully to another person

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about something,

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for example, that would be intentional communication,

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which may not be possible for everyone.

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But there is no appreciation,

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no evaluation in it,

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that one would be worth more or less.

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Communication is communication.

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This is again closely related to

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these two factors of sensitivity and responsiveness,

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namely the high degree of dependence these people have

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on the people around them,

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how well these people are trained,

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to perceive their smallest, minimal, subtle

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or unusual, or to perceive their signals

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and to perceive them in the first place, to perceive them at all,

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that they are there, and then to interpret these signals,

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to put them into context and

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then respond to them.

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And the difficulty lies in the fact that

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that these signals are very subtle

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For example, an increase in muscle tone

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or tension expressed in increased muscle tone

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or in a frown or

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perhaps in a change in breathing.

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That's different from when someone, for example,

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could express or does that by screaming.

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It will certainly be noticed and

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there will certainly be a reaction to it.

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But if these are very subtle signs

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that require the person to be very close,

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then it can happen

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that there isn't always a consistent response to it,

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but that

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on one day, the employee is there,

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who is very close to the situation and perceives everything accurately

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and then also creates exactly the conditions

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that the person needs, or

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responds to them and makes appropriate changes

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or even offers communication.

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On another day, there may be someone there who

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who is less efficient or less attentive

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and then the signals go unheeded.

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And that means

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that it's much more difficult for these people

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even what you know,

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in other words, contingency, or contingency expectations,

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in other words, building expectations about self-efficacy,

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which is then the basis,

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building expectations about self-efficacy,

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which is the basis for intentional behavior,

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that this basis

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is more difficult to establish, so to speak,

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because it is based on consistent responses.

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So that the child repeats or

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the person repeats the experience,

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aha, this follows that.

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And because the signals are so subtle,

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it more or less works.

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And they already have a difficult basis, so to speak,

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for building up these expectations.

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The other thing is

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that the signals

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can be misinterpreted more quickly.

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So there are also examples

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so I'm also referring to

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I learned a lot there

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from Flasskamp's books,

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that, for example, a smile does not always mean

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that someone is happy,

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but that a smile can also mean

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I'm in pain.

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So I had an example myself,

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again with children in the area,

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but it doesn't really matter,

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it could just as easily be adults,

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that the person in personal care often smiled

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or laughed and ultimately found out that

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she had a hip dislocation and that

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just caused her pain.

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And those are just the kinds of things

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that, of course, she also laughed,

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when she was feeling well,

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but then the laughter or

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smile looked a little different.

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And if someone doesn't know her that well

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or isn't informed about it,

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then of course you make completely different offers.

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So normally it's just a smile

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an invitation to do more of that

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or I'm enjoying myself

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and then you get in or

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maybe move around or whatever.

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And it's not, so to speak,

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a response to the sign

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that is appropriate.

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Or that doesn't fit then.

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Which, so to speak, is a

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And there are also many behaviors

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that are very unusual for us,

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that is,

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that we have to adjust to first.

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This also includes behaviors

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such as screaming or self-harming behavior

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or aggressive behavior towards others,

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where you first have to ask yourself,

00:14:00.986 --> 00:14:02.226
where you don't know exactly, okay,

00:14:02.226 --> 00:14:05.586
is it an epileptic seizure or is it

00:14:05.890 --> 00:14:07.490
a deliberate action, so to speak,

00:14:07.490 --> 00:14:09.010
so you have questions like,

00:14:09.010 --> 00:14:10.170
how should one classify it,

00:14:10.170 --> 00:14:12.410
that we lack the concepts

00:14:12.410 --> 00:14:14.030
to classify certain behavior.

00:14:14.030 --> 00:14:15.970
And that also has the consequence

00:14:15.970 --> 00:14:18.890
that many uncertainties arise,

00:14:18.890 --> 00:14:21.490
on the part of the caregivers.

00:14:21,490 - -> 00:14:23,250
One uncertainty, for example, is

00:14:23.250 --> 00:14:24.350
that you say,

00:14:24.350 --> 00:14:25.690
okay, I can't know for sure

00:14:25.690 --> 00:14:27.230
what this sign means.

00:14:27.230 --> 00:14:29.890
How am I supposed to attribute meanings to it?

00:14:29.890 --> 00:14:32.950
And that it's then more likely not to be done.

00:14:32.950 --> 00:14:37.598
And then there's no development, so to speak,

00:14:37.598 --> 00:14:39.238
but that it's important

00:14:39.238 --> 00:14:40.998
to proceed in a hypothesis-driven manner,

00:14:40.998 --> 00:14:44.578
to exchange ideas about it and to say,

00:14:44.578 --> 00:14:48.358
okay, always in this context you see this and that behavior,

00:14:48.358 --> 00:14:50.738
that could mean this and that, and then you agree,

00:14:50.738 --> 00:14:53.058
okay, we'll go this way for a while

00:14:53.058 --> 00:14:54.938
and then just see

00:14:54.938 --> 00:14:57.278
if anything changes or if, so to speak,

00:14:57.278 --> 00:14:58.438
that it's confirmed.

00:14:58.438 --> 00:15:00.138
And actually, it's always a search for

00:15:00.610 --> 00:15:01.690
how to proceed.

00:15:01.690 --> 00:15:03.170
And that's also a process

00:15:03.170 --> 00:15:05.390
where the environment also has to get involved,

00:15:05.390 --> 00:15:06.710
to these uncertainties,

00:15:06.710 --> 00:15:08.970
but then still not to say,

00:15:08.970 --> 00:15:10.270
not to start at all,

00:15:10.270 --> 00:15:11.930
but to start anyway.

00:15:11.930 --> 00:15:16.130
And that's what I think,

00:15:16.130 --> 00:15:19.010
that there is a lot of potential

00:15:19.010 --> 00:15:23.610
could still be exploited, so to speak,

00:15:23.610 --> 00:15:26.710
if we just got started.

00:15:26.710 --> 00:15:29.610
Or also that some people

00:15:30.498 --> 00:15:32.318
with the profound intellectual and multiple disabilities,

00:15:32.318 --> 00:15:34.858
that a routine develops,

00:15:34.858 --> 00:15:36.918
that the same offers are always made,

00:15:36.918 --> 00:15:39.798
that it is no longer questioned.

00:15:39.798 --> 00:15:40.578
So that's another example

00:15:40.578 --> 00:15:41.778
of something like basal stimulation,

00:15:41.778 --> 00:15:45.338
ten years of basal stimulation at school and yes,

00:15:45. 338 --> 00:15:46.738
what are the development prospects,

00:15:46.738 --> 00:15:47.858
where is it actually going,

00:15:47.858 --> 00:15:49.578
that this is not questioned at all

00:15:49.578 --> 00:15:51.978
and that also has something to do with the fact

00:15:51.978 --> 00:15:55.258
that it's difficult to recognize,

00:15:55.258 --> 00:15:58.554
but also with making the effort

00:15:58.554 --> 00:15:59.774
perhaps systematically,

00:15:59.774 --> 00:16:01.854
just as I described earlier with music,

00:16:01.854 --> 00:16:04.734
systematically over several weeks

00:16:04.734 --> 00:16:06.974
to try out different offers

00: 16:06.974 --> 00:16:10.834
and to look more closely,

00:16:10.834 --> 00:16:12.234
to look even more closely,

00:16:12.234 --> 00:16:14.514
in order to perceive these small differences

00:16:14.514 --> 00:16:15.754
in behavior,

00:16:15.754 --> 00:16:18.434
which may then express preferences or aversions

00:16:18.434 --> 00:16:21.974
or recognition or orientation.