CAN WE TALK?

Getting in Touch with People with Severe Learning Disabilities who

have little or no Speech – and whose disability is linked to Autistic
Spectrum Disorder (ASD)

A Handbook for Families

and Carers

Phoebe Caldwell
Assisted by
Simon Willan

Phoebe Caldwell, Beechstones Barn, High Bentham, Lancaster LA2 7LA

Courtesy of North West Training Development Team (Partners in Policymaking)

www.nwtdt.com
Can you talk to Mary?

Do you feel cut off from Janeed?

Some people with learning disabilities are difficult to reach. We cannot

talk to them and they can’t talk to us. They seem to be locked in a world
of their own.

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Instead of looking at and listening to the world outside themselves, they
may be focusing on some activity or behaviour in a way which we call
self-stimulating. It is part of a conversation going on between their brain
and body. The brain sends a message to the body, ‘Do this’ and the body
sends ‘feedback’ to the brain saying, ‘Done it’.

For example:

The brain says, ‘Scratch your finger with your thumb’. The thumb does
this and sends back a feedback in the form of feeling to the brain, telling
it that it has done so.

All their attention is focused on this activity. It feels safe, hard-wired in.
In a world which they may see as chaotic and, in the case of ASD,
perceive as painful, they know what they are doing. They are not listening
to anything outside themselves.

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They may be paying attention to physical feedback from their own
bodies, for example, rubbing hands/fingers/thumbs, flapping hands,
humming, making sounds, screaming, rocking, banging their heads,
walking up and down. It may be some feeling, as little as just listening to
their own breathing rhythm.

Or it may be that they are using some activity hijacked from the outside
world to focus on. For example, they may be spinning objects, shutting
doors, moving furniture, switching lights on and off or tearing paper.

We need to learn to look at how a person is talking to themselves. What is

the feedback they are giving themselves? What are they paying attention
to? When they focus on themselves what is it that has meaning for their
brain? What they are doing is using a language their brain recognises and
feels safe with.

In order to get in touch with people we have to learn their language so we

can speak to them in a way that their brains feel safe with. It’s like a
smart card with a personal code that we can use to get access to their
inner world.

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We have to learn to think in terms of body language.

First of all we have to look hard – and really listen to see and hear what
they are doing (not what we think they ought to be doing but what they
are doing.) Are they making any sounds or movements? These may be
very small, as small as the sound of sucking their own saliva, or in the
case of movements, difficult to spot since fingers may be rubbing
themselves under crossed arms. However, once we know what we are
looking for it becomes easier.

If your child is more able, they may be

fixated on certain themes, such as
”Eastenders”. Talk to them through their
interests. Use the strategies that arise in
Eastenders to negotiate behaviour. They
may understand much more clearly than
trying to tell them directly.

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What is Kevin doing?

Is he listening to his breathing rhythm,

tapping, making small sounds,
crying, screaming?

Is he stroking himself,
stroking something else, scratching himself,
pulling his hair, banging himself or the wall,
hitting himself?

Rocking, swinging?

Poking his eyes, touching his face,

flapping fingers or objects,
spinning objects

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If Kalil is banging himself or rocking, try banging the wall in the same
rhythm? He will almost certainly stop in order to look and see what is
happening. Wait a minute or two and then knock the wall again. If he
repeats it, answer him.

You are trying to build up a conversation, taking turns as you would if

you were speaking to each other.

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 Does Nick bite
himself
and scream?

“Arrghh”

Stand where he can see you,

but not directly in front, put
your arm in your mouth and
echo his sound.

He may be so surprised that he stops, looks at you, and after a few more
times, turns away and gets on with what he was doing before his outburst.

If he gets used to this, you may have to vary the rhythm of your sound.

“Arrgh-arrgh!”

Use a sound like “arrgh”, only softer to talk to him when he is not upset.

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As well as seeing what they are doing, we need to think about how they
are doing it. If they are upset, sounds may get louder, hands flap more
agitatedly.

This tells us how they are feeling, if they are happy or upset.

Always Remember:

When a person is doing a Repetitive Behaviour, they know what they are
doing.

It is a hard-wired, non threatening conversation with themselves.

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TRY JOINING IN!

Watch and see what happens.

Do they seem to stop what they are doing and listen? Are they interested,
looking round to see where ‘their sound’, ‘their movement’ is coming
from?

Try again. Watch and see.

You may have to do this several times until they realise that if they make
a sound they get a response which means something to them, which they
recognise.

Whatever the person is doing, answer them. In doing so, you will shift
their attention from their inner world where they are listening to
themselves, to the world outside where we can share our lives.

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After a little while you will need to introduce some small variations.
Watch carefully to see if they introduce new material and respond to this,
otherwise they will think you are not listening to them and loose interest.

You may need to shift the mode in which you respond to them, answer
them in a different but related way - but still using their rhythm. For
example if someone is making a sound, you might make the ‘shape’ of
the sound on their arm.

If someone is rocking you might change the direction of the rock from
side to side to forwards and backwards, or while still rocking alter the
rhythm by putting a small jerk in it. Make a game of it, but be prepared to
introduce new material and follow when your partner offers it.

You can also use empathy by changing the quality of sound in your voice
to respond to the emotional tone of their utterance.

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Some people cut themselves off because they have autism – autistic
spectrum disorder – ASD. They find it difficult to make sense of what
they feel, see, hear, smell and taste.

Sam can see, but on the way to the brain, the images hit a bottleneck and
he cannot process them. Sam gets overloaded with images, sounds and
feelings.

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You can think of autism as being like a busy airport where more planes
are coming than there is space to land the aeroplanes stack up.

If there are too many planes they might crash.

In the autistic brain unprocessed images, sounds and feelings also stack
up, overload and interfere with each other.

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The more stressed Sam feels, the more overloaded he gets until the
images, sounds or feelings break up into fragments and unregulated
surges of feelings which are confusing - or maybe acutely painful.

It’s like: “A cattle prod”

“Being tuned into 40 TV sets at once”
“Having a faulty volume control”
“Being drowned in a tidal wave of feelings”
“Living in a Kaleidoscope where the pattern never settles”
“Having a lion in your head”
“Agony”
“Everything fires at once”

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There are many different causes of stress in people with ASD. Not all will
be upset by the same things. Some will find sounds difficult, others will
find visual effects cause stress. One of the hardest things is people
(emotional overload).

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 Vision

Look and see what it is that upsets Jenny.

Does she screw up her eyes, avoid bright lights?

Use dimmer light. Avoid “jazzy” patterns in clothes (yours and hers) wall
paper, carpets and pictures.

If she likes certain colours, use them.

CUT DOWN ON OVERSTIMULATION.

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 Lines we see as straight may
wriggle for Herbie – like the line
between the wall and the floor.

So

Herbie kicks the wall to know

where it is.

(People with ASD may often touch objects, lick, or

kick them to find out where they are).

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 Sounds

High frequency
hums

small
clicks

Loud noises

Telephone
bells

These are some of the sounds that

might upset people with ASD.
Sometimes they are OK –
Sometimes they……

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 Touch

If you have to touch Sandra, ALWAYS show her what you are going to
do first.

This gives her time to prepare her

body.

FIRM TOUCH IS LESS PAINFUL THAN LIGHT TOUCH.

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 Smell and Taste

Some smells are lovely for us

But
DISGUSTING
For
someone who is hypersensitive to smells!

Some tastes are

REPULSIVE!
To someone who is
hypersensitive
to taste!

Each person with ASD is different. We have to work out where each
piece of the jigsaw fits in.

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 Speech

Speech is a
problem!

I can hear the first word and sometimes the last

but in between it sort of
S
L
I
P
S
away.

Always use simple speech.

Always speak quietly
Accompany with gestures! (Signs may be too abstract).

Let Ann know what you intend doing

before you do it. Wait for her to nod. Then
you know that she knows what you are
trying to do.

USE YOUR HANDS TO TALK.

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 Emotional Overload

Instead of feeling happy when someone smiles at Di, she feels pain. The
feedback of warmth we feel when we make eye contact, hurts her – some
people experience “feeling” as agonisingly painful.

If Sian looks away when you look at her, do not insist on eye contact.

It will help her if you look away when you speak to her.

Eyeball to eyeball contact causes stress and pain to some people with
ASD.

Yasmin bites her Mother when her Mother tries to hug her, She wants to
be hugged but feels she is being drowned in a tidal wave of feeling.
Keep it cool!

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 What’s Happening?
She lives in a scrambled world. She can’t make sense of it. Even though
she can say words like, “tomorrow”, “yesterday”, “Tuesday”, “next
week”, she does not understand the “intervals” involved.

In order to take part in her life, Sue needs to know:

Who will be around.

What is happening.
When it will happen.

Sue needs telling in a way she will understand.

1.Clock
Buy a pack of electric works of a clock and the hands from a
watchmaker.

Drill a hole in the centre of the board and insert spindle.

For a day clock, throw away the minute hand.
For an hour clock, throw away the hour hand.

Do not put figures on the clock. Start with one picture.

Use white, self adhesive Velcro so it does not distract attention from the
picture.

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2. Day Timetable.

Pictures on front of card.

Fablon on back.
Velcro both sides so the card can be turned over.

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3. Weekly Timetable

This timetable can be used for pictures of both people and activities. The
important thing to get over is the difference between “now” and “not
now”

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4.Year Calendar

Use an office calendar and “split” the months to make it easy to see
where you are:

Cross off one day at a time. Make special dates, for example Christmas
tree for Christmas.

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These special clocks, timetables and calendars help people to know what
is going on at any time.

Put them where they can be used all the time, to negotiate and aid
understanding.

Use the same system at home and the day centre, otherwise they may
look in the wrong place for information.

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 Choices
can be very difficult

they double the amount of visual processing.

Change of programme
is always stressful.

Sarah has just about worked out what is happening and then it

.
She knows that she is going for a walk, but does she know that she is
coming back? You may have to show her by gesture that as well as going
out she is returning to the place she knows.

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SCHOOLS ARE HARD !
TOO MUCH …..
STIMULATION
Especially

IN THE LARGE

KEEP LIFE SIMPLE

LEARN THE LANGUAGE

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