SUPPORTING ASPERGERS FAMILIES IN ESSEX (SAFE) · •Tony Attwood – The complete ... Friendship problems Find it very hard to understand the give and take of ... SUPPORTING ASPERGERS

SUPPORTING ASPERGERS

FAMILIES IN ESSEX (SAFE)

ASPERGER’S SYNDROME

Sarah Lennard Brown

Autism Spectrum Conditions

• Autism is a lifelong developmental

disability that affects how a person

communicates and relates to others.

• It is a spectrum condition, which means

that while all people share certain

difficulties, their condition affects them in

varying ways and to different degrees.

History

• Leo Kanner in 1943 first described autism

• Hans Asperger in 1944 described the

syndrome named after him (German – so

‘Asperger’ has a hard ‘g’

• Asperger’s work went virtually unnoticed

until Lorna Wings work of 1981.

• Tony Attwood – The complete guide to

Asperger’s 2006.

Prevalence – NAS statistics

• Approximately 1in 100 of the population (700,000

nationally)

• If you include families it affects 2.7 million people

nationally

• More males than females 15:1 (Asperger’s syndrome)

• Affects all classes and ethnicities equally

• Nearly 2/3 of people with autism do not have enough

support to meet their needs

• 1 in 3 adults with autism have severe mental health

problems as a result of the lack of support

• 15% of people with autism in paid employment

Causes

• Not Parenting

• Genetic Factors – currently investigating. There are a number of genes being investigates and these work together in different ways to produce the variations of the spectrum

• Physical factors and environmental factors

Neurological differences • Larger brains overall and higher brain volume but

communication between two hemispheres is smaller but there are fewer neurone connections between the two hemispheres. (Palmen and van England 2004)

• The limbic system (seat of emotion) impaired (Rogers 1998)

• People on the Autistic spectrum have problems with the fusiform face gyrus, the area of the brain associated with facial recognition (Schultz 2005)

• Cerebellum abnormalities. The Cerebellum is crucial in learning motor sequencing and adaptation learning

• Hemisphere reversal – language centre is normally in the left hemisphere but in Autism Right (the left hemisphere is involved in language learning –people with Autism often benefit from a visual form of learning.

Asperger’s syndrome

• Social Communication ) were called

• Social interaction )the Triad of

• Social Imagination )impairments

BUT NOW a FOURTH equally important

SENSORY:

Sound, touch, taste, smell, sight

Peaks and troughs of performance

Difference between chronological age, IQ

age and developmental age

OTHER PROBLEMS:

CO-MORBID CONDITIONS:

• Anxiety

• Dyspraxia

• Stomach and colon disorders,

• Obsessive Compulsive Disorder

• ADHD

• Tourettes

• etc

Problems can arise in these areas

• Making sense of people – facial expressions,

body language, tone of voice, idioms

• Social relationships: friendships, communication,

emotion, take things literally, rigid imagination,

• Coping with Groups

• Phobias

• Sensory and motor

These problems last a lifetime although may

change as the person gets older and develops

strategies.

All the behaviours associated with ASD have a

function and this must be assessed if they are to

be addressed.

Making sense of people People can be difficult to understand if you don’t

get:

• Facial expression

• Body language

• Tone of voice

• Idioms

So:

• Keep instructions simple and clear

• Use visual back up

• Train individuals for specific situations.

Communicating with people with Aspergers

Syndrome

• People with AS have good vocabulary that

veils difficulties in understanding

So:

• Use the name of the person

• Use the persons interests to help focus

attention

• Use visual cues (pictures and diagrams)

• Use simple language

Communication – taking things literally

• language is usually literal and concrete

So:

• Don’t use idioms – very hard!

• Sarcasm

• Subtle jokes

• Metaphors

• Be precise in instructions don’t use

unnecessary words - say what you want

not what you don’t want

Coping with Groups

Working with groups is difficult

• If you expect someone to take part in a

group make sure they are not expected to

do anything other than cope with being in

a group – learning for example

Social Relationships 1 • Cannot make friends although wants to do so

• Knows he is different but doesn’t understand

how or why

• Does not understand how to make friends

• Social cues others use

• Turn taking

• Indicators of interest or boredom –facial and

body

• Personal space

• Tone of voice – “I didn’t say she stole my

money”

Social Relationships 2

So:

• Teach rules explicitly – visual

• Use of signals or code to indicate when to

stop or change subject

• Escape plan

• Structure time that is usually unstructured

– break, rest, relaxation

Interrupting and appearing rude A person with AS may not realise they are being

rude. They do not always understand different

forms of languages for different situations –

especially under stress so may be:

• Excessively blunt

• Make personal comments that are not polite but

usually are true

• May not understand personal space

• Lack of eye contact and understanding body

language

• So – be understanding – don’t take offence

Rigid Imagination Talking about one subject all the time – reduces anxiety,

only way to hold a conversation, obsessive thought

So:

Be careful – this focus is one of their special

talents

• Set aside special times – good luck with that!

• Use reward system for completing a task –

without side-tracking

• Give other strategies to cope with stress

• Use the interest to develop conversational skills

• Find others with similar interests to talk to

Breaking routines

People with AS get upset when things are

not as expected – sometimes small changes

are more difficult to accept than large ones

So:

• Calendar apps on phones and computers

• Warn of change – being late or early

Phobias Phobias can include anything – dogs, dirt, water,

crane flies, vomiting, illness, etc…

Caused by rigid connections based on a single

experience

Continued avoidance of phobia makes it worse

So:

• Very gradual exposure to phobia

• Associate pleasurable experience with phobic

experience – e.g. ice-cream in park with dogs

• Use photos, then video, then real item at a distance

• Strategy to help cope – look away and walk quickly

Sensory motor difficulties

Noise

Touch

Visual

Taste

Smell

Noise

Allow people to separate themselves from

loud noise, especially in unstructured

situations – tolerance can vary – airplanes!!

Babies crying, young children shouting.

Gradually increase tolerance

Strategies – noise cancelling earphones and

music players

Warnings about expected loud noises – fire

alarms, hand dryers

Touch • Cannot distinguish accidental/ purposeful touch

• Cannot distinguish aggressive/ friendly touch

• Unaware of how other people experience their

touch

So:

• Approach from the front

• Warn if you are going to touch

• Debrief after incident and give strategies to calm

• Practice situations – give appropriate responses

• Social stories

Visual

• Visual distractions can be imposing on the

senses as sound or touch – they cannot

filter it out

So:

• Distraction free interaction area

• Show what to focus on

• Don’t insist on eye contact

• Lighting – florescent problems

Functioning difficulties

• Central coherence enables people to

understand broad concepts, enables

pieces of information to be fitted together.

For people with Asperger’s every detail

can be as important as every other, pieces

remain separate and unrelated. They are

excellent detailed thinkers as they have

weak central coherence.

Functioning difficulties

• Cognitive inflexibility – concrete thinkers.

Problems planning and transference of

knowledge from one situation to another.

• Organisational – either very obsessive

about order as they externally create

order, or total chaos.

• Obsessions occupy thoughts to the

exclusion of all else. This can be a coping

mechanism.

Theory of Mind

• Theory of Mind is the awareness that you have a mind separate and unique to yourself and others have minds of their own that are unique to them.

• People with AS often lack self awareness and an awareness of how their actions impact others or bring about consequences. They have a lack of awareness of their own mental state

And

• They often find it hard to understand that others have minds, thoughts and feelings of their own that may be very different from their own

Emotional differences

People are unpredictable – causes anxiety

Can be overwhelming

• Emotional development usually behind

chronological age – adolescent behaviour

into adulthood

• Not limited by fear of others reactions –

vulnerable

• Misinterpreting the approaches of others

Anxiety • Consistent routines help

• Warn of change

• Irrational fears – gradual desensitisation

(can take years and years)

• Rehearse new activities before they occur

• AS appropriate CBT

• Mentoring

• Medication

• Support and active involvement of family

Friendship problems

Find it very hard to understand the give and take of

friendship

• Often profoundly lonely

• Want things always on their terms – difficulty

negotiating

• This egocentricity is not conscious

• Friendships based on shared interest work best

• Mentoring helps – personal assistant /

supportive peer

Counselling people with AS

These are ideas on how to adapt

counselling for people with AS based on our

experience – we are not qualified

counsellors.

Counselling people with

Asperger’s syndrome • Understand Asperger’s syndrome

• Understand the person being counselled: their idea of self, their self esteem, self acceptance, as it has been formed by their experiences.

• Understand the latest on Theory of Mind

• Use computers, stick men, etc

• You may need to be more of a mentor rather than a counsellor – help the person with Asperger understand their own feelings better

• Help them understand their strengths and weaknesses

Counselling – Setting the scene • The challenge is to take verbal counselling and adapt it

to accommodate visual learning.

• Need to set the rules – what you expect and what they should expect – don’t say sessions will be every week as you may be sick – say they should be weekly but of course sickness and holidays occur so this may not always be possible. When they can contact you. May need to explain turn taking – perhaps have a visual cue to stop the person talking too much. Need to explain what you require of them – they must answer your questions fully. Not be surprised if there are a lot of questions. Try and work with you to identify issues and work on solutions together

• Base it on concrete issues not feelings

• Perhaps shorter sessions as they will get tired

• Be aware of environmental issues (flickering light, noisy radiator)

Basic modifications to counselling

• Writing down concepts and diagramming

them helps the client focus and

understand better

Use:

• thermometers for emotions, coping

• stick men for social stories

• emoticoms for expressions/feelings

Consider pocket prompts or use of new

technology

Counselling - adaptations

• Baseline assessment – does the person understand feelings and emotions and what is their understanding – it may not be the same as yours.

• Use graphs e.g. of how the person is progressing with counselling – explain it will look like a mountain peak – not all up but ups and downs

• Don’t expect a person with Aspergers Syndrome to understand how they feel.

• Need to realise the implications of What You SAY – they are literal e.g. do not eat sweet things before meal times as it will ruin your appetite- person instead eats lots of salty snacks and still ruins appetite as nothing was said about these.

• Lack of awareness of self and understanding of how their actions impact on others or bring about consequences

• They struggle to understand that others have minds, feelings, and thoughts (Theory of Mind)

Questioning • Keep it simple so don't ask multiple questions as people

with AS process non factual information slower and may only hear the first or last thing you ask (e.g Do you often have meltdowns and if so when and how do they occur? Rather: Have you had times when you have felt overwhelmed? (let person answer) When did this last occur (let person answer) do you know what brought it on (let person answer) etc…use of multiple choice questions – always include a box none of these .

• Don’t be surprised if there is a delay in them answering you as they may need longer processing time.

• If they do not appear to be listening use their name before you ask the question

• Ask detailed questions – people with AS do not deliberately hold back information they may not think or know how to convey information or they may think you already know what is going on in their heads

Other sources:

• The complete guide to Asperger’s Syndrome Tony Attwood ISBN1-84310-495-4

• Counselling people on the Autistic Spectrum A Practical Manual Katherine Paxton and Irene A.Estay

• The British Psychological Society – www.bps.org.uk

• National Autistic Society – www.autism.org.uk

• Jessica Kingsley Publishers www.jkp.com