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GERRY BROPHY TALKING LIFE AUTISM GROUND RULES Confidentiality We have the right to make mistakes and not know things Take responsibility for your learning by asking questions and giving feedback Allow others to have their say, challenge the views not the person You can leave the room at any time, without explanation AIMS What is Autistic Spectrum Disorder(ASD) How does ASD impact on individuals? How these conditions can affect behaviours What support is needed in order to lead fulfilling lives. What communication tools can be used with people who are autistic? FULFILLING AND REWARDING LIVES FOR ADULTS WITH AUTISM The guidance focuses on 4 important areas where health and social care can practically change the way they support adults with autism: increasing understanding of autism amongst staff strengthening diagnosis and assessment of needs continuing to improve transition support ensuring adults with autism are included within local service planning WHAT ARE AUTISTIC SPECTRUM DISORDERS Life long developmental disabilities caused by neurobiological dysfunction that typically: Appears during first three years of life and prevents individuals from properly understanding what they see, hear and sense. This results in problems in communication, social relationships, and behaviour. Causes Theories about the causes of autism have changed markedly over the years. Many professionals, believed that inadequate parenting was the primary culprit. Recent increases in the numbers of children diagnosed with autism have also led to a search for possible environmental causes. However, there is no evidence that environmental factors such as vaccinations (notably the MMR vaccine), pollutants, dietary additives, and so on, are in any way responsible. CAUSES contd. The causes of autistic spectrum disorder are not clearly understood but include genetic factors, chromosomal abnormalities, complications of pregnancy and child birth leading to organic brain damage. The condition is associated with epilepsy in up to 30% of cases. Pervasive Developmental Disorders Asperger’s Syndrome Autism PDD – Not Otherwise Specified Rett's Syndrome Childhood Disintegrative Disorder What differentiates? •Number of characteristics •Age of onset •Genetic factors •Pattern of behaviors •A certain diagnosis does not mean a “lesser” set of concerns, this does not address severity of any behavior. ASPERGER'S SYNDROME First described in the 1940s Most people with Asperger's syndrome are within the normal range of intelligence but may have difficulties with social interaction and a restricted range of activities and interests. Their speech can be well developed and fluent but language may be used in unusual ways. Rett syndrome Typically, children with Rett syndrome begin by developing fairly normally but go through a period of regression, losing acquired skills; this can be accompanied by distress and anxiety. At least one in every 10,000 females born has Rett syndrome. It is believed to be the second most common cause of severe and profound learning disability in girls. A large proportion of people who have Rett syndrome have a mutation, or fault, on the MECP2 gene on the X chromosome. There are substantial communication and mobility issues for people with Rett syndrome. Most will not speak and, by adulthood, only 50% will walk. However, we are increasingly aware of people with Rett syndrome living well into their 50s and beyond. Childhood disintegrative disorder (CDD) Also known as Heller's syndrome and disintegrative psychosis, is a rare condition characterized by late onset (>3 years of age) of developmental delays in language, social function, and motor-skills. No known cause for the disorder. CDD has some similarity to autism, and is sometimes considered a lowfunctioning form of it, but an apparent period of fairly normal development is often noted before a regression in skills or a series of regressions in skills. Some children describe or appear to be reacting to hallucinations, but the most obvious symptom is that skills apparently attained are lost. Triad of Impairments Social Relationships Social Communication ASD Rigidity of Thought, Behaviour and Play (Social Understanding) COMMUNICATION Some may not use spoken language to communicate, and may use non-verbal means instead, e.g. pushing, biting, squealing, crying. May not understand subtle conversational clues e.g. facial expressions indicating surprise, anger etc. and may therefore not know to look contrite. May have difficulties with concepts e.g. more / less, time (including the need to wait) Inability to ask questions to establish another persons view point, but may ask repetitive questions e.g. What's your name? COMMUNICATION Some may use unusual intonation with stereotypical, stilted speech (or a sing-song intonation pattern) May have a very literal understanding of speech - therefore may fail to follow instructions Repetition of chunks of language heard in other situations/videos - may sound clumsy or odd Social Relationships • may display general awkwardness in social situations • May be unable to interact appropriately with peers • Difficulty in making friends – may initiate and want social contact, but lack understanding and skills to carry through • Unusual facial and/or physical gestures (smiles, grimaces, eye-contact) Social Relationships • Problems with social “distance” • may have difficulties with conventional turn-taking and sharing. May start/finish conversations abruptly or fail to answer appropriately. •may not see themselves as a part of group • Motivation – may not be rewarded by success at tasks (They are not being lazy or obstinate!) RIGIDITY OF THOUGHT, PLAY AND BEHAVIOUR May find activities difficult when imagination or pretend skills are needed, e.g. home corner, role play games Difficulty coping with adult direction and imposed routines Difficulties with understanding changes in routine and new situations RIGIDITY OF THOUGHT, PLAY AND BEHAVIOUR Some exhibit fixed interests and may become obsessional about these Attentional problems on tasks chosen by others Difficulties with problem solving, e.g. finding an item that is not in its usual place Seeing 'part' rather than 'whole' - not the 'bigger picture‘, e.g. focusing on a specific part of a picture Rigidity of thinking and behaviour Perseveration - the need to repeat words, actions, activities etc DIAGNOSTIC MANUALS INTERNATIONAL CLASSIFICATION OF DISEASES The ICD-10 is the most commonly-used diagnostic manual in the UK. It presents a number of possible autism profiles, such as childhood autism, atypical autism and Asperger syndrome. These profiles are included under the Pervasive Developmental Disorders heading, defined as "A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations". A revised edition (ICD-11) is expected in 2018 and is likely to closely align with the latest edition of the American Diagnostic and Statistical Manual (DSM). DIAGNOSTIC TOOLS The DSM and ICD-10 criteria create the foundation for diagnostic tools such as the DISCO (Diagnostic Interview for Social and Communication Disorders), the ADIR (Autism Diagnostic Interview - Revised), and the ADOS (Autism Diagnostic Observation Schedule). These, and other diagnostic tools, are used to collect information in order to help to decide whether someone is on the autism spectrum or not. The criteria form the basis for the diagnosis, but the individual clinician’s judgement is crucial. The DISCO diagnostic tool does not rely on the algorithms for ICD-10 and DSM-5. The approach is dimensional rather than categorical. The DISCO not only gives a diagnosis but gives an understanding of the profile and needs. Beyond the Triad of Impairments The Sensory World of Autism • Senses provide us with the unique experiences which allow us to interact & be involved with others • Senses play a significant role in determining our responses to a particular situation • Many individuals with autism experience either an intensification or absence of sensory integration Hyper— Hypo— The Sensory World of Autism The Five Senses • Touch (includes balance and body awareness) Tactile: relates to touch ,pressure, pain, hot/cold Hypo- Hyper- Holding others tightly High pain threshold Self-harming (biting, gouging etc.) Finds touch painful/uncomfortable (Social aspect) Sensitivity to certain clothing/textures Dislike of having things on hands/feet The Sensory World of Autism The Five Senses • Touch (includes balance and body awareness) Vestibular: informs where body is in space Hypo- The need for rocking, swinging, spinning Hyper- Difficulties in activities which include movement (sport, dance) Difficulties in stopping quickly or during an activity The Sensory World of Autism The Five Senses • Touch (includes balance and body awareness) Proprioception: where & how body is moving Hypo- Proximity – personal body space in relation to others. Navigating rooms – avoiding obstructions. Hyper- Fine motor difficulties, manipulating small objects (buttons, threading, shoe laces etc). Moves whole body to look at something. The Sensory World of Autism The Five Senses • Sight Visual: helps to define objects, colours, space Hypo- Peripheral vision (central vision blurred) Poor depth perception (throwing/catching) Hyper-Fragmentation of images (too many sources) Focussing on particular detail (rather than whole). The Sensory World of Autism The Five Senses • Hearing Auditory: informs about sounds around us Hypo- Partial or complete absence of hearing Enjoys noisy places/activities (bangs things) Hyper- Magnification or distortion of sounds Unable to filter out external sounds The Sensory World of Autism The Five Senses • Smell Olfactory: Is the first sense we rely on Hypo- May be oblivious to strong odours May lick things indiscriminately Hyper- Smells appear intensified/overpowering. Toileting problems The Sensory World of Autism The Five Senses • Taste Gustatory: Informs about various tastes Hypo- Likes very spicy/salted foods May eat anything (soil, grass, material etc) Hyper- Prefers bland (white) food Texture of food may be problematic (lumps) REPETITIVE AND STEREOTYPED BEHAVIOUR The triad of impairments is often accompanied by a need to carry out familiar, repetitive activities, this may show as anxiety and upset when the preferred routine is broken, or fascination with specific hobbies or interests. Behavioural difficulties may happen when there are changes to the routine and can be used as a way of coping with anxiety. REPETITIVE AND STEREOTYPED BEHAVIOUR People with an autistic spectrum disorder often have sensory problems, in that the brain is unable to process sensory information in a typical way, either being over-sensitive, under-sensitive or having an inappropriate reaction to stimulation. This may show up as extreme agitation or distress in dealing with discomfort. Other ways of dealing with sensory problems include repetitive actions such as spinning, jumping or flicking of objects, which may be a way of getting some sensory input. Literalness or Concreteness In receptive language nothing can be taken for granted in the individual’s understanding of instructions that are not specific. Humour or figurative speech will be very confusing. A request such as “Would you like to finish that writing now?” may only evoke the answer "No" …. (And this might be wrongly interpreted as provocative when this was not intended). You can communicate more effectively with a person who has ASD by: Avoiding using metaphors and sarcasm, Saying exactly what you mean, Using visual cues where necessary (for example, a fork for mealtimes, or a towel for bath time). Education When a child is diagnosed with ASD, they should have an assessment of their educational needs. Some children may need to attend a specialist school for children with ASD, whereas others may be able to attend a mainstream school, but require some extra support during lessons. In some cases, it might be more appropriate for your child to be educated at home. Most schools that educate children with autism have adopted the TEACCH approach Treatment and Education of Autistic and Communication handicapped Children (TEACCH). It is based on the principle that people with autism learn better in a structured educational environment The TEACCH approach is grounded in theories of cognition and behaviour. Understanding the causes of unwanted behaviour is important in the process of trying to reduce it. The physical learning environment in which the person is learning is organised in a structured way to help them learn what activities take place in particular areas, and to avoid sensory distractions. They are given clear instructions for every stage of an activity, usually presented in a visual way. people with autism tend to be visual learners FAMILY AND CARERS The impact of autism is keenly felt on relationships within the family including the parental relationship, the impact on other siblings and spousal relationships. Advice and help from services and from other families and carers of individuals with autism is valued highly. Parents also report a struggle to come to terms with a new identity as a carer of a person with autism and the sense of isolation or ostracism that came from this. WHAT CAN WE OFFER Offer families, partners and carers of adults with autism an assessment of their own needs including: Personal, social and emotional support Support in their caring role, including respite care and emergency plans Advice on and support in obtaining practical support Planning of future care for the person with autism. If the person with autism wants their family, partner or carer(s) to be involved, encourage this involvement and: negotiate between the person with autism and their family, partner or carer(s) about confidentiality and sharing of information on an ongoing basis explain how families, partners or carers can help support the person with autism and help with care plans Ensure that no services are withdrawn because of involvement of families, partners or carers, unless this has been clearly agreed with both the person with autism and their family, partner or carer(s). Give all families, partners and carer(s) (whether or not the person wants them to be involved in their care) verbal and written information about: autism and its management local support groups and services specifically for families, partners and carers Their right to a formal carer's assessment of their own physical and mental health needs, and how to access this. Intervention and Management The major issue is concerned with reducing any stress which might otherwise stem from some uncertainty over what is expected or from communication breakdown, and which might be reflected in what appears to be non-compliant or challenging behaviour. The programme for any given person will be based upon individual observations and assessments, but basic strategies could well include some or many of the following: •Providing a clear structure and set daily routines •Visual timetables and picture boards to provide checks on tasks to be covered •Providing warnings of impending changes of activity or interruption to routine •Use of clear and unambiguous language •Addressing requests or directions directly to the person, and not assuming that s(he) will adhere to group directions •Teaching what "finished" means •Repeating instructions and checking understanding •Using a range of means of presenting ideas …. modelling, etc. Visual, peer- •Specific teaching and practising of social skills like turntaking •Minimising distractors •Exploring the use of computer-based learning and wordprocessing •Not insisting on those activities which the person particularly dislikes, such as games The National Autistic Society indicates that there are a number of problems, which require specific consideration when assessing the needs of people with ASD. All the following difficulties have a potential impact on living and working environments: • “Resistance to change; • Obsession or ritualistic behaviour; • High level of anxiety; • Lack of motivation; • Inability to transfer skills from one setting to another; • Vulnerability and susceptibility to exploitation; • Depression; • Challenging behaviour; • Self injury.” https://www.camden.gov.uk/ccm/content/co ntacts/categories/contacts-for-autism/ HANDOUTS AND POWERPOINT 1. Visit the website: www.talkinglife.co.uk 2. Select TRAINING BUTTON 3. Select Client LOG-IN BUTTON on left hand side of this page 4. Select Isle of Tower Hamlets 5.Sign in as follows: username: LBTH3396 password: 06.06.2016 Go to I’ not a robot and verify 3 images 6. then log in 7. Select course and follow links to various handouts and presentations for LBTH tel 0151 6320713