SUPPORTING ASPERGERS FAMILIES IN ESSEX (SAFE) ASPERGER S SYNDROME Sarah Lennard Brown

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1 SUPPORTING ASPERGERS FAMILIES IN ESSEX (SAFE) ASPERGER S SYNDROME Sarah Lennard Brown

2 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.

3 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 Tony Attwood The complete guide to Asperger s 2006.

4 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

5 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

6 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.

7 Asperger s syndrome Social Communication Social interaction Social Imagination ) were called )the Triad of )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

8 OTHER PROBLEMS: CO-MORBID CONDITIONS: Anxiety Dyspraxia Stomach and colon disorders, Obsessive Compulsive Disorder ADHD Tourettes etc

9 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.

10 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.

11 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

12 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

13 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

14 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

15 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

16 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

17 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

18 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

19 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

20 Sensory motor difficulties Noise Touch Visual Taste Smell

21 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

22 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

23 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

24 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.

25 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.

26 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

27 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

28 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

29 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

30 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.

31 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

32 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)

33 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

34 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)

35 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

36 Other sources: The complete guide to Asperger s Syndrome Tony Attwood ISBN Counselling people on the Autistic Spectrum A Practical Manual Katherine Paxton and Irene A.Estay The British Psychological Society National Autistic Society Jessica Kingsley Publishers

We communicate 80% of what we want to say through non-verbal actions

We communicate 80% of what we want to say through non-verbal actions What is Autism? Autism is a developmental syndrome which means there are social and communication differences which affect the way a person communicates and relates to others What causes Autism? The exact