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Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Guidance for Multi Agency Professionals Integrated Care Pathway for the Management of Autism Spectrum Disorders in Children and Young People Leicester, Leicestershire and Rutland 2009 tReview due 12 months after implementation Page 1 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 N.B. I’ve probably got the names all wrong……..Index Page Introduction 3 Working towards a diagnosis of Autismtic Spectrum Disorder 5 Role of the Autism Reference Group 8 Flow chart guidance for multi-agency professionals 9 Appendices 10 Appendix 1 What is an Autism Spectrum Disorder 10 Appendix 2 The Triad of Impairments 12 Appendix 3 Information for parents /carers on the 15 diagnostic criteria that may be used during an assessment for a possible Autismtic Spectrum Disorder Appendix 4 Glossary of abbreviations used 17 Appendix 5 List of parents and professionals involved in 18 Working Group for ASD Document tReview due 12 months after implementation Page 2 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Autismtic Spectrum Disorder Pathway Introduction The purpose of this guidance is to describe expected practice in relation to children whose needs may fall on the autismtic spectrum (see Appendices 1 and 2). It focuses particularly on the importance of joint working among professionals when an autismtic spectrum disorder is suspected. All relevant agencies in Leicestershire, Leicester and Rutland, which employ professionals involved in making a diagnosis of autism have agreed that this protocol will be followed.1 Why is the Integrated Care Pathway being developed now? For a number of years this has been an area of ongoing work involving local professionals working together to develop local guidance. The following drivers have ensured that this work is embedded in local practice. The National Service Framework for Children, Young People’s and Maternity Services (Department of Health, 2004) articulated the need for specialist services for children with Autismtic Spectrum Disorders to be provided in a seamless fashion as close to the child’s locality as possible (Standard 9). It stressed the importance of multidisciplinary and inter-agency working in order to meet the child’s needs effectively and without undue delay,: and emphasised that universal services have a clear role to play in child mental health, though they some children and young people also need ready access to appropriately skilled specialist mental health professionals for those children who go on to require it. The SEN Code of Practice (DfES, 2001) also stresses the importance of early identification, use of best practice in meeting needs, partnership working between parents and professionals, multidisciplinary approaches to service provision and timely intervention. Although these principles apply specifically to educational needs, the overarching themes are replicated in the broader ‘Every Child Matters’ agenda. ‘Every Child Matters’ recognises the need to bring services together, work in a multidisciplinary ‘team around the child’ and to focus on the needs of the child in the home, community and education settings. The National Autism Plan for Children (NIASA, 2003) sets out the need for a co- ordinated approach for the identification, assessment and diagnosis and support of children with Autismtic Spectrum Disorders. Current practice varies considerably across the country and thisthe National Autism Plan for Children plan sets out best practice in diagnostic assessment, making it clear that this should be multi-agency, and include observations of the child across different settings in addition to taking the early developmental history from parents/carers. 1 Please note that the terms “identification” and “diagnosis” are used interchangeably in this document. tReview due 12 months after implementation Page 3 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 What is the Purpose of the Pathway? It is recognised that early identification is important for the future of children with Autismtic Spectrum Disorders. Hence, the purpose of this pathway is to describe expected practice in relation to supporting children whose needs may fall on the Autismtic Spectrum. It focuses particularly on the importance of joint working among professionals when an Autismtic Spectrum Disorder is suspected or where there are differences of opinion between professionals. A large number of professionals in different agencies work with children who have been identified with an Autismtic Spectrum Disorder, which may involve specialist interventiontreatment. The AutisticAutism Spectrum Disorder pathway is designed to help professionals know where to go for additional help for the child. Also to make the process as clear and timely as possible, ensuring that the child and family receive the appropriate input at the right time. Most importantly, the Pathway should allow children, young people and their parents to understand how the various services they are in touch with will work together, with the aim of obtaining the best outcome as soon as possible. Assessment The Autismtic Spectrum Disorder Pathway will involve new ways of working with creative and positive thinking and practice. It should limit therepetition, and potential confusion and the hurdles families have to crossoften face and offer the opportunity for early voluntary sector support (even in the absence of confirmed identification of the problem, such as an Autismtic Spectrum Disorder). A guiding principle of this work is that whenever possible, a child’s presenting needs should be met from within universal services (such as Education), since in reality, this is where they will spend much of their time. However, in some cases a child and family may require an additional, more specialist level of intervention (such as from Child and Adolescent Mental Health Services or Community Children’s Children’s Community Health Services) to inform or enhance how the childy will continue to be managed in the universal setting. This involves a graduated approach in which more specialist services may be incrementally added to the universal services on the basis of individual need, but without in any way replacing them. When concerns arise from a professional about a child’s development, it is expected that people in contact with the child and family should get in touch with support services for advice, as per local referral guidelines Wherever concerns originate, or are first expressed by a parent/carer, it is expected that the practitioner involved will ensure further investigation and observations are undertaken. For all children with additional needs, it is expected that a holistic view of the child will be undertaken, which may include using under the Common Assessment Framework (CAF), as described within the Every Child Matters document. This should be discussed with the parent(s)/carer(s). tReview due 12 months after implementation Page 4 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 The Role of Parents/Ccarers Parents/carers are essential partners in the assessment process because as they are an invaluable source of information. While we recognise that practitioners may have a range of hypotheses, especially in the early stages of investigation, it is considered good practice that parents be included in and aware of these hypotheses. It is important that such information is co-ordinated amongst the professionals involved with the family in order to avoid mixed, or confusing, messages. Precisely how this information should be shared with parents is a matter for professional judgement. Working towards a diagnosis of Autismtic Spectrum Disorder This section should be read in conjunction with the Floflowchart on page 78. Stage 1: Initial concerns rRe. ccommunication /social interaction & gathering information Health Practitioners should consider either a Single Point of Access (SPA) referral to Community Children’s Community Health Service (CCHS) Children’s Health Services (CCHS) or a SPA referral to Child and Adolescent Mental Health Services (CAMHS) as necessary (see flow chart and information below), unless the child is already known to them. This is to explore other possible explanations for the child’s presentation. Education Practitioners should consult with appropriate supporting professionals in line with the SEN Ccode of Ppractice to seek to meet the child’s needs. If an Autism Spectrum Disorder is suspected then a referral should be made toC CCHS CHS or CAMHS (see Stage 2 below). A professional who will be the lead for the child’s assessment should be identified Formatted: Bullets and Numbering out of all the professionals involved with the family and child (this may be done as part of the CAF). This lead person should be someone who is working closely with the family and can be self appointed (with the family’s consent). Once the lead person is identified then the other professionals and parents should be informed (preferably in writing). Stage 2: Referral for Health Assessment Children with these difficulties may should be seen by either CCCHSCHS (Community Children’s Health Services) or CAMHS to consider and exclude any additional health needs or other diagnosis. Indicators for which service to refer to are outlined below. a. Referrals to CCHS should be considered if Formatted: Bullets and Numbering i. The child is under 7 years old AND/OR ii. There are any concerns about a child’s development AND/OR iii. There are concurrent medical issues such as possible seizures or regression tReview due 12 months after implementation Page 5 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 a.b. Referrals to CAMHS should be considered if Formatted: Bullets and Numbering i. There are suspected associated mental health problems (such as Obsessive Compulsive Disorder, Tourette’s, mood disorders, severe anxiety or possible psychosis) AND/OR ii. The child is 13 years old or older AND/OR iii. The child is ‘post adoption’ or currently being ‘Looked After’ (as attachment difficulties can present in a similar way) b.Referrals to CCHS should be considered if Formatted: Bullets and Numbering i.The child is under 7 years old AND/OR ii.There are any concerns about a child’s development AND/OR iii.There are concurrent medical issues such as possible seizures or regression d.c. Children who are over 7 years old but under 13 years old and have have no other needs, (as outlined above in parts a and b,) may be referred to either service. e.d. When a referral is received by a service (for example received by CAMHS) is felt to be inappropriate for that service, then the following options are available i. If the letter clearly indicates (as per the criteria in part a and b above) that the referral should have gone to the other service, then the referral letter should be faxed across to the other service with a standard note sent to the referrer to let them know. ii. If after assessment by one service it is felt that there is a clear indication for handover to the other service (as per the criteria in part a and b above), then a referral letter should be sent to the SPA for the other service. Please see * below iii. If after assessment by one service, a second opinion is sought from the other service, then a request for a second opinion should be sent to the SPA for the other service. Please see * below iv. If after assessment it is felt that a joint assessment is indicated with the other service, then a request for a joint opinion should be sent to the SPA of the other service. Please see * below * Any referrals from one service to another (for a referral, second opinion or joint assessment) should include all relevant assessments (including the child’s educational attainment and/or developmental level). Referral to Speech and language therapy to be considered (if SLT not involved) tReview due 12 months after implementation Page 6 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Stage 3: Comprehensive Assessment The lead person should consult all other agencies involved with the child, with parental permission, as part of the assessment process. Professionals have a duty to respond to requests for such consultations. . The information gathered should include observations in, and/or information from, different settings and an early developmental history. It should also include information on the child’s strengths and interests. A mMultiagency meeting (including parents where appropriate) should be held wherever possible to share information, and reach a conclusion . Also and to identify roles and actions to be taken. If a multiagency meeting is held it should be arranged by the lead professional for the child and should include as a minimum the lead professional and one other professional. At least 2 agencies should be represented at the meeting. A minimum of 2 professionals who are able to make a diagnosis (clinical psychologist, educational psychologist or doctor) need to be involved in the identification. The lead person should also seek information from all the professionals involved who are unable to attend the meeting. In the event that a multidisciplinary meeting cannot be held within a reasonable time Formatted: Bullets and Numbering frame, then the lead professional should gather information from all the different agencies involved (via reports or telephone). When professionals supply information in this way (rather than via a meeting), the professionals need to ensure that their view of whether there are any difficulties (or not) with the child’s social and communication skills, is clearly indicated. The lead professional should inform the other professionals involved if there is any difference of opinion when they collate the information. Stage 4: Outcome of Assessment Once the professionals involved in the assessment are satisfied that uncertainties Formatted: Bullets and Numbering have been resolved, and that Autismtic Spectrum Disorder is identified, this should be confirmed in a face to face meeting with the parents/carers (if this has not already taken place at Stage 3). Information about available support and agencies (such as that in the ASD information pack) should be given to the parents at this meeting. The identification of an ASD should and then be confirmed in writing to the parents/carers., There should be a discussion with the family about how and when to share the outcomes of the process with the child/young person, taking into account their age, developmental level and parental wishes. If the lead professional should need to change at this point, parents must be informed. All children should have a care plan. tReview due 12 months after implementation Page 7 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Where more time is required for assessment (for a child to develop, or for Formatted: Bullets and Numbering interventions to be evaluated), parents should be informed verbally and in writing what the next steps are and when the circumstances will be reviewed. with information about available support and agencies Where there is disagreement within the group of professionals involved with the child as to the outcome, the practitioners should seek a joint assessment with CAMHS/CCHS. Then if a disagreement still exists, the practitioners should request a review of all of the evidence by the Autism Reference Group. Where parents disagree with the outcome, it is important to try to resolve the disagreement amicably. This may involve identifying and clarifying the nature of the disagreement, consulting with colleagues and advising parents of the possible next steps, including consideration by the Autism Reference Group. tReview due 12 months after implementation Page 8 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Stage 5: Transition(NSF Standard 4 Growing up into Adulthood) Multiagency working with the team around the child continues for as long as Formatted: Bullets and Numbering necessary. Transition arrangements for young people above 13 years old will be supported by a Transitions Personal Advisor (PA) and in some cases a specialist PA, from the Connexions Service and referrals are made through the school SENCo or by approaching the Connexions bases within the child’s local community. Protocols have yet to be negotiated to inform the progression to adult services for Formatted: Bullets and Numbering Autism Spectrum Disorders. Role of the Autism Reference Group The Autism Reference Group is made up of professionals from all of the agencies involved in the diagnosis and support of children with Autismtic Spectrum Disorders, and at least one parent. When approached for guidance, the Group expects that all parties involved will share their evidence with the Group. The Group will aim to: Clarify sources of the discrepancy in opinions Identify the means to resolve these. Parental consent must be obtained before the Autism Reference group is approached. The Autism Reference Group can be contacted via the current chair of the Autism Reference Group who can be contacted via Charles Huddleston firstname.lastname@example.org. tReview due 12 months after implementation Page 9 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Guidance for Multi Agency Professionals Integrated Care Pathway for Autism Spectrum Disorders Leicester, Leicestershire and Rutland The following should be read in conjunction with the text of the document and Appendix 4 Stage 1: INITIAL CONCERNS Re. COMMUNICATION /SOCIAL INTERACTION Start (0 months) AND GATHERING INFORMATION Timeline is a guide -cases can progress differently through the stages-this should not be considered as binding. Parental Concerns or Professional Concerns (with parental consent) directed to: GP/SW SLT/HV Early Years Setting/School Assesses Assesses SENCo implements SEN Formatted: Bullets and Numbering Provides advice/intervention Provides advice Code of Practice Formatted: Bullets and Numbering Refers to CAMHS/CCHS /intervention / refers to other Refers to Teacher Support Formatted: Bullets and Numbering agencies (including CCHS) Services &/or EP Refers to CCHS or EP may refer to CAMHS Professional involved advises parents of Community, Voluntary & Independent support agencies. The professional who will be a lead is identified (see text) Stage 2: REFERRAL FOR HEALTH ASSESSMENT (to consider and exclude any additional health needs or other diagnosis) Notify GP if GP is not making referral themselves 6 months CAMHS CCHS (& referral to SLT needed if not involved) Stage 3: COMPREHENSIVE ASSESSMENT Supported by multi agency information Parents and all the professionals involved with child contribute to the assessment Whenever possible a multiagency meeting is held to share information. If this is not possible, then the lead person is to collate the information. 9 months Stage 4: OUTCOME OF ASSESSMENT Stage 4a: ASD IDENTIFIED Stage 4b: ASD NOT IDENTIFIED Diagnosis and information pack ASD ASD NOT EXCLUDED given to parent. EXCLUDED Complex case management Multi agency working with ‘Team around the Child’ continues. Alternatives Referral for CAMHS/ CCHS for A care plan is prepared & explored and handover/ 2nd opinion or joint implemented. appropriate assessment (see text in document) support given Parents given information about relevant ASD training, locally No multiagency consensus for ASD 1 year available intervention approaches (e.g. Early Bird & Early Bird Case discussed at Multi Agency Plus) & support agencies Autism Reference Group (Community, Voluntary and Independent) MULTI AGENCY WORKING CONTINUES WITH TEAM AROUND THE CHILD Stage 5: TRANSITION tReview due 12 months after implementation Page 10 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Appendices Appendix 1 – What is an Autism Spectrum Disorder? The term “Autism Spectrum Disorder” is used to describe a range of conditions, which share certain core featurespresent in very similar ways. However, although the clinical picture is unique to each individual, depending on factors such as gender, age, ability and personality style and . Although the core features of Autism Spectrum Disorders are always present, thesey may vary in degree and expression. All children with an Autism Spectrum Disorders have difficulties in the following characteristics, describedthree areas, known as the “Triad of Impairments.” These are: a. Difficulty with social understanding and relationships with adults and children. b. Difficulty with social communication and language. c. Difficulty with social imagination (i.e. difficulties with activities involving flexibility of thought and behaviour). In addition, their sensory perception and processing is often different from other children They can be hypo or hyper sensitive and can have difficulty selecting out what is relevant, thus being overwhelmed or confused by sensory information. (For more details on the Triad of Impairments, please see Appendix 2) Difficulties in these areas must be present before the age of 36 months for a diagnosis to be made ((ICD-10, WHO, 1992), although such difficulties can be missed in the early years so that the diagnosis often occurs at a much later age, particularly in the more able group. These characteristic traits may be evident before the age of 3 years. While all children may show some or all of these tendencies difficulties at some time or another, where they are continuing, hey occur in more than one setting, and/or are at a level unusual for the child’s age, the matter should be investigated. How many people have an Autism Spectrum Disorder? Diagnosis is based on observation and history taking and there is no definitive test for ASD. A study of preschool children by Chakrabarti and Fombonne in 2001 in Staffordshire, found that 16.8/10,000 had autism, 70% of of whom had additional learning difficulties; and 62.6/10,000 were identified in the broader group as having an autism spectrum disorder. Baird (2000) found a similar prevalence of 57.4/10,000 for ASD in children before the age of 7 years. For Asperger syndrome, she found a rate of 27.1/10,000 (Baird, 2000). A review by the Medical Research Council review on Autism states that there is likely to be about 60 per 10,000 children with an ASD under the age of 8 years. This rate is likely to increase with age, as more children are identified. In some areas many more children are diagnosed with an ASD and in other areas there are fewer identified. More boys are diagnosed as having an ASD (overall ratio 4:1) than girls, particularly in the more able group. The most recent studies (2005-6) suggest between 0.9% and 1.16% of the population. The National Autistic Society believes 1% of the population to be the best estimate available at present. It is generally believed that up to 4 times as many boys may have an Autism tReview due 12 months after implementation Page 11 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Spectrum Disorder than girls. This means that in the school age population of Leicester, Leicestershire and Rutland there are likely to be between 1,900 and 2,500 children and young people with an Autism Spectrum Disorder. What causes an Autism Spectrum Disorder? There is some evidence from twin studies and studies of family members thatof genetic factors beingare involved in ASD, probably with the involvement of several genes. Twin studies have shown that there is much increased likelihood of both twins having ASD if one has a diagnosis, than in non-identical twins; and other family members too may also have a diagnosis of ASD. Several environmental factors and possible triggers are also being researched. (eg pollutants; diet; pre and post natal incidents). , in that the conditions tend to be more common in some families:. Hhowever, there may also be other underlying factors and environmental triggers. Put mMore simply put, we don’t really know yet! tReview due 12 months after implementation Page 12 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Are children with Autism Spectrum Disorders more likely to have other problems? As traditional methods of learning require good communication skills, then aA large proportion ofAll children with an ASD will be affected in their ability to learn in school in the traditional ways, as these are largely socially mediated and require good communication and social understandingneed staff to be . Staff will need to be aaware of their particular learning styles for children with ASD. They are often visual learners and may be advantaged in relation to some tasks (eg their focus on detail; ability to attend to areas of special interest). About 70% of children with autism also have additional learning difficulties and will be delayed in their development. But About 30% of children with autism and all of those with Asperger Ssyndrome will be of average or above average intellectual ability and can do very well academically. However, their good academic skills may mask their difficulties in social and emotional understanding, problem-solving and independent living skills. children also have additional learning difficulties – estimates for this vary wildly. Children with Autism Spectrum DisorderASD are also more likely to have epilepsy, which develops in adolescence. They may also have, hearing difficulties, visual problems, sensory problems, motor perceptual problems, and dietary problems.difficulties in sleeping and in eating a balanced dietdietary problems. Some specific medical conditions are also more commonly associated with Autism Spectrum Disorders. These include genetic disorders conditions such as Fragile X syndrome, Rett Syndrome, and Down Syndrome and Tuberous Sclerosis. Can children with Autism Spectrum Disorder be helped? It is generally accepted that ASD is a lifelong condition and that education is the most effective intervention (NIASA, 2003). With appropriate support and interventions, children can develop strategies to help address the difficulties they have in social understanding, interaction and communication, so that with time, their ASD might be less apparent and disabling. If their ASD is understood and teaching staff make adjustments to typical school routines and teaching methods, then they can succeed well at school and lead godd quality lives as adults. If they are misunderstood and not supported, then they can become very depressed or highly anxious and stop attending school or become very challenging to services. Ghaziuddin (2005) has written a recent book on the mental health needs of those with ASD. Yes. While there is currently no known cure for Autism Spectrum Disorders, it is recognised that an early diagnosis and assessment, leading to an appropriate package of support, can help children and their families to reach their full potential. References Baird, G et al. (2000) A screening instrument for autism at 18 months of age: a 6 year follow-up study, Am. Acad.Child Adolesc. Psychiatry, 39, 694-702 Chakrabarti, S and Fombonne, E (2001) Pervasive developmental disorders in preschool children, JAMA, 285, 3093-3099 Ghaziuddin, M (2005) Mental health aspects of autism and Asperger syndrome, London: Jessica Kingsley Medical Research Council (2001) Review of autism research: epidemiology and causes, London: Medical Research Council tReview due 12 months after implementation Page 13 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 National Initiative for Autism: Screening and Assessment (2003) National Autism Plan for Children, London: National Autistic Society tReview due 12 months after implementation Page 14 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Appendix 2 – The Triad of Impairments As noted in Appendix 1, all children with Autism Spectrum Disorders have the following characteristics, described as the “Triad of Impairments.” These are: a. Difficulty with social understanding and relationships with adults and children Formatted: Bullets and Numbering a.b. Difficulty with social communication and language b.c. Difficulty with social imagination (i.e. difficulties with activities involving flexibility of thought and behaviour). c. Formatted: Bullets and Numbering In addition, their sensory perception and processing is often different from other children They can be hypo or hyper sensitive and can have difficulty selecting out what is relevant, thus being overwhelmed or confused by sensory information. The following notes attempt to explain theseelaborate on these three areas. Children with an ASD can be very different from one another so not all the features described will be seen in all children or to the same degree (both within and between genders). . different parts of the “Triad”. However, please note that this list is by no means exhaustive! a.a) Difficulty with social understanding and relationships with children and Formatted: Bullets and Numbering adults This is shown in different ways, according to the specific needs of each child. However, there are four main types, or groups, of behaviour. These are:Four different social subgroups have been identified in the autism spectrum (Wing, 1996). Children can change over time in terms of which group best describes them. i) The aloof group Children in this group are not people focused. They may behave as though if other people do not exist. – for example, , by not responding when they are called or if you speak to themspoken to, or and by they may appearing to look through or past you. They may also avoid physical contact from others (including hugs), unless this is initiated by them.), aleven though they may respond well to rough and tumble play. T, hey may walk past you others (or even over you) without acknowledging your their presence. They may grab your you’re their mother’suse another’s hand to arm to use your her hand to grip objects or carry out tasks (e.g. open a fridge door), without looking at you herthe person. or holding hands. They may show no interest or sympathy if you are in pain or distress. This group are is often described as being “in a world of their own.” Claire Sainsbury (2003), a very able woman with ASD says, “We are in your world, but we are just attending to different parts of it.” If children take part in rough and tumble play, social contact may appear “normaltypical” and appropriate, but the child will often return immediately to his or her “own world” once the game is over. ii) The passive group tReview due 12 months after implementation Page 15 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 This group will accept social approaches from others but do may not initiate social contact with children or their parents. Like the aloof group, they may avoid eye contact but are more likely to meet other people’s gaze when reminded to do so.and make very few demands on their parents/carers. They are often termed prematurely independent or as babies may be described as ‘too good.’. They may take part in guided play but may find it difficult to adjust when the game changes. iii) The ‘active but odd’ group Children in this group make often make active social approaches to others, most often with adults, but this often feels in a one-sided. The manner in which they make contact can be unusual and inappropriate (e.g. touching others; hitting others; interrupting loudly with a question about their special interest). fashion that makes demands on others or meets only their own needs, without consideration for others, sometimes including the “invasion of body space.” Eye contact can be strong but only in that it is poorly timed and rarely broken. Physical contact can be over-enthusiastic and they may cause pain to others but not realise this – as they domay have difficulties in not interpreting and/or expressing feel the pain themselves. They may therefore be termed rude, selfish and aggressive, when this is not their intention at all. They fail to understand and appreciate others’ needs and emotional feelings. – again without consideration for the needs of others. This group tends to present problems of identification and diagnosis becausemay be misdiagnosed or miss diagnosis as their the active social approaches can mask their lack of understanding of how and why to interact socially. iv) The over-formal, stilted group This tends to show up in adolescence, and may be seen in those who are most able and who have a good level of spoken language. They are may be excessively polite and formal in their behaviour and try hard to stick rigidly to the rules of social interaction. They have difficulty understanding these rules and may have difficulty in accepting the different rules for different situationsunderstanding that these rules change with the social context. – e.g. they may remain as formal with their own family as with a complete stranger. b) Difficulty with verbal and non-verbal communication and language All children and adults with Autism Spectrum Disorders have difficulties with in understanding the purpose of communication and in how to communicate effectively. They often only communicate with others for a very limited range of functions (usually requests for objects or activities) and do not communicate for the simple pleasure of sharing ideas and observations with others. communication. They also may have problems in processing the spoken language of others and take language literally. They will act on the words alone without taking in the context and so be confused with phrases such as ‘Paint the child next to you’ or with metaphor and jokes. Their language may – or may not – be impaired, but the problem lies with the way they use whatever language they do have. Apart from children with Those with Asperger Syndrome, syndrome are not delayed in developing spoken language, whereas all other groups of children on the autism spectrum are delayed in developing spoken language by the age of 3 years and some of thoese children will need alternative forms of communication to speech. Children with good spoken language can often have problems with holding conversations with difficulties with social timing, intonation, body language and in changing the focus from their interest to that of the listener. tReview due 12 months after implementation Page 16 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 All children with ASD, including the most able, will benefit from having instructions in a number of different forms (eg speech; objects; photos; symbols) to make the meaning clear. i)Using speech Formatted: Bullets and Numbering Delay and abnormality in development of speech are very common, but the severity can vary considerably. For example, some children remain mute, or just develop a few sounds and single words (occasionally). Others develop speech ,but this often beginsning at a much later age than “normal.” They often start by repeating words spoken by others, especially the last word or few words from a sentence, sometimes with little or no meaning for the child. The accent and intonation used by the original speaker may be copied. This is called ‘echolalia.’ Some children repeat words or phrases they have heard in the past. This is called ‘delayed echolalia.’ These phrases may sometimes be used appropriately. Some children never pass the stage of echoed speech, while others will move on to working out some basic phrases for themselves – starting with single-word statements, usually naming wanted objects or comforts such as “drink,” or “sweet.” Some will go on to use more complex statements involving two or more words, but often with mistakes in grammar and word meanings. Examples of this may be “want dinner,” or “go car shops.” There is often a confusion with “me” or “I,” and “you.” Others may develop a large vocabulary with good grammar, and may not have had any early delay. However, But there are usually more subtle difficulties, such as those with a good vocabulary who speak very little. Others may speak at length but tend not to use colloquial expressions, making them sound pedantic and old-fashioned. Some have been described as “little professors.” The content of speech of those who can talk tends to be repetitive and not conversational in style. They may even repeat the same question endlessly regardless of the answers received, or deliver a monologue on their special interests – whether or not the audience appreciates it. ii)Understanding Speech Formatted: Bullets and Numbering Some children do not understand speech and do not respond when spoken to. Most do have at least some understanding. This may be limited to the names of familiar or simple, contextual instructions, such as “Give me your cup.” It can be difficult to know how much is understood from the words and how much is guessed from the context of the situation. Confusion may arise from a lack of flexibility in word meaning, for example where an object may have more than one name. For example, aA car may be referred to by the family as a “Vectra” – but to the child with an Autism Spectrum Disorder, all cars may now be a “Vectra.” Literal interpretation of language may be another area of difficulty. Examples include “Go and wash your hands in the toilet,” with the unfortunate and predictable result. Others, like tReview due 12 months after implementation Page 17 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 “It’s raining cats and dogs,” can result in confusion, and a mistaken belief that the child is being cheeky because s/he is looking for a horde of animals dropping from the sky. iii) Intonation and voice control Formatted: Bullets and Numbering The majority of people with Autism Spectrum Disorders have odd or monotonous speech patterns, and/or may also have problems in controlling the volume of their speech. This may be too loud or (not very often) too quiet. iv)Using and understanding non-verbal communication Formatted: Bullets and Numbering Much of our communication is not through speech so much as through gesture, body movement and facial expression. People with Autism Spectrum Disorders have difficulty in using and interpreting these methods of communication. For example, young children may take a parent by the arm and lead them to a desired object, trying to put their parent’s hand on the object to convey their wishes, while a child who is developing normally is more likely to point at the object while giving eye contact to their parent. A child may not be able to interpret a smile or a frown. c) c) Difficulties with activities involvingin flexibility of thought and behaviour Children without ASD are usually able to adapt if situations change and can predict what they might do instead – often recalling similar, past experiences. This enables them to problem solve, to make choices and to engage with different social partners. In ASD, all children including the most able, find it very hard to work out what to do when their usual routine or activity is interrupted or can not be followed and this can cause great distress. It is very helpful if they are given visual reminders or suggestions of what they might do. They may not appreciate that toys represent the real object nor that they can pretend to be someone else in a game – and so find other ways to explore a toy car or train (e.g. spinning the wheels). Their play therefore often looks unconventional and they may need support in broadening out the range of play activities. Once they have developed a particular routine (e.g. route to school) or way of doing an activity (drinking from a bottle), some children with ASD prefer to stick to this routine – as they know it works and they can succeed. Suggesting an alternative can be very anxiety- provoking as they can not then predict what might happen instead. Change therefore has to be gradually introduced and planned to reduce anxiety and panic. Children with Autism Spectrum Disorders do not develop pretend play and imaginative activities in the same way as other children. Many never develop any kind of pretend play. This may mean that toys are handled for sensory or physical reasons, such as picking up a toy car and spinning the wheels, or lining cars up in a fixed order. Some will repeat scenes from favourite TV programmes. Some will copy the actions of an animal or inanimate object (such as a train). These actions will be limited and repetitive, rather than inventive. Others will act out a series of actions that they have invented, but without any variation on repeating the activity. Most do not involve other children :or if they do, they usually want the others to take part in the same repetitive activity. They may reach a stage when they want to take part in other children’s imaginative games but do not know how. tReview due 12 months after implementation Page 18 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Children with Autism Spectrum Disorders will often use stereotyped activities for sensory or physical stimulation such as tasting, smelling, feeling or tapping and scratching different surfaces, staring at lights or shiny objects, flicking fingers or hands or other objects near the eyes, spinning objects or switching lights off and on repetitively. There are many other possible examples. Sometimes the repetitive activity takes the form of self-injurious behaviour, such as head banging, self-slapping, etc. Most often, this type of behaviour is a response to distress, anger or frustration, but can also be used as a self-occupying activity.Some have more complex repetitive routines, such as tapping a chair before sitting on it, or tapping a doorway (or all doorways in the immediate vicinity) before passing through it. Other routines may be linked to activities with parents – for example always taking the same route to the shops, or always having the same bedtime routine. An enforced break in the routine may well be accompanied by challenging behaviour. Resistance to change can apply to food in that some children will eat only a very restricted range of foods, dependent on colour, texture or flavour. Some are so sensitive to changes in flavour that different brands of the same foodstuff are not acceptable. More able children may be fascinated by special subjects such as railway timetables, dinosaurs, the weather , or any other subject ,- especially where specific facts may be collected, memorised and talked about. It should be noted that such facts may include, for example, statistical information on the goals scored by an individual in successive seasons, without any understanding of the reasons for the variation – such as injuries, increasing age, etc. Strengths and special interests Not all children with ASD will have an area of exceptional talent or skill. However, it is very important for ALL children that their strengths, special interests and skills are also assessed,and recorded and made a part of their programme of support. Children with ASD are not as motivated by the usual social rewards, and so their special interests can act as incentives for working on less desirable activities or difficult areas. It is worth noting that some able adults with ASD are keen to see ASD as Autism Spectrum Difference and not Autism Spectrum Disorder, as they maintain their way of being is a valid and successful way of being – and that they are only disabled when they are misunderstood and upset by others who do not know them and do not understand ASD. As ASD is so pervasive, there is a danger that in school or within their programme, the main focus is on areas of difficulty. It is therefore crucial that activities which they love and enjoy (no matter how strange they may seem to others) are built in to the programme. Social activities are likely to cause the most difficulty for many with ASD and so time alone at school and home is likely to be very beneficial. Some adults with ASD have said that ‘Social was their worst subject at school but they were not allowed to drop it.’ It is important to take note of this sentiment in what is planned. They will need to be supported in knowing what to do when they have time alone – as they literally may not see what they could do – if this is not made tangible. Baron-Cohen (2003), Attwood (2006) and others have suggested that ASD is perhaps an extreme form of the male brain. They have discussed the particular skills and talents of people with ASD and shown that some very successful artists, musicians, engineers and computer software designers probably had or have ASD. Their visual strengths, attention to detail and less time spent on social tReview due 12 months after implementation Page 19 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 relationships can lead to great achievements in areas such as engineering, architecture, composition and design. Showing parents/carers and the children themselves that there are successful role models and that ASD is not all about difficulties, can help a great deal to raise self esteem and improve the quality of life. There are able adults with ASD who are keen to see ASD as Autism Spectrum Difference and not Autism Spectrum Disorder, as they maintain their way of being is a valid and successful way of being – and they are only disabled when they are misunderstood and upset by others who do not know them and do not understand ASD. Wing, L (1996) (Adapted from: “The autistic spectrum: a guide for parents and professionals”, pp38-48, by Lorna Wing (1996). London: Constable, London) tReview due 12 months after implementation Page 20 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Appendix 3: Information for parents/carers on the diagnostic criteria that may be used during an assessment for a possible Autism tic Spectrum Disorder. The two lists of diagnostic criteria below are from the DSM IV (The 4th Diagnostic and Statistical Manual of Mental Disorders) and ICD10 (The 10th International Classification of Diseases, WHO, 1992). 1. Diagnostic criteria for “Autistic Disorder” (DSM-IV, 1994): A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): (1) qualitative impairment in social interaction, as manifested by at least two of the following: a) marked impairment in the use of multiple nonverbal behaviours, such as eye-to- eye gaze, facial expression, body postures, and gestures to regulate social interaction b) failure to develop peer relationships appropriate to developmental level c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) d) lack of social or emotional reciprocity (2) qualitative impairments in communication, as manifested by at least one of the following: a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others c) stereotyped and repetitive use of language or idiosyncratic language d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (3) restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities as manifested by at least one of the following: a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus b) apparently inflexible adherence to specific, non functional routines or rituals c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements) d) persistent preoccupation with parts of objects B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play. tReview due 12 months after implementation Page 21 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 C. The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder. 2. Diagnostic criteria for “Autism Disorder” (ICD-10; WHO 1992) At least 8 of the 16 specified items must be fulfilled: a) Qualitative impairments in reciprocal social interaction, as manifested by at least three of the following five: 1) failure adequately to use eye-to-eye gaze, facial expression, body posture and gesture to regulate social interaction 2) failure to develop peer relationships 3) rarely seeking and using other people for comfort and affection at times of stress or distress and/or offering comfort and affection to others when they are showing distress or unhappiness 4) lack of shared enjoyment in terms of vicarious pleasure in other peoples' happiness and/or spontaneous seeking to share their own enjoyment through joint involvement with others 5) lack of socio-emotional reciprocity. b) Qualitative impairments in communication: 1) lack of social usage of whatever language skills are present 2) impairment in make-believe and social imitative play 3) poor synchrony and lack of reciprocity in conversational interchange 4) poor flexibility in language expression and a relative lack of creativity and fantasy in thought processes 5) lack of emotional response to other peoples' verbal and non-verbal overtures 6) impaired use of variations in cadence or emphasis to reflect communicative modulation 7) lack of accompanying gesture to provide emphasis or aid meaning in spoken communication. c) Restricted, repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by ate least two of the following six: 1) encompassing preoccupation with stereotyped and restricted patterns of interest 2) specific attachments to unusual objects 3) apparently compulsive adherence to specific, non-functional routines or rituals 4) stereotyped and repetitive motor mannerisms 5) preoccupations with part-objects or non-functional elements of play material 6) distress over changes in small, non-functional details of the environment. d) Developmental abnormalities must have been present in the first three years for the diagnosis to be made. tReview due 12 months after implementation Page 22 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 Appendix 4 – Glossary ASD Autism Spectrum Disorder CAF Common Assessment Framework CAMHS Child and Adolescent Mental Health Services EP Educational Psychologist GP General Practitioner HV Health Visitor CCHSCCHS Community Children’s Community Health Services SEN Special Educational Needs SENenCo Special Educational Needs Coordinator SLT Speech and Language Therapist SPA Single Point of Access ( N.B. there are 2 separate SPA processes for CAMHS and CCHS) SW Social Worker Appendix 5 – List of Parents and Professionals involved in Working Group for ASD Document Dr K Bretherton Consultant in Learning Disability (CAMHS) Ms V Brown/Mrs R Speech and Language Therapists (CCHS) Leavesley Ms M Campbell Early Years SEN Co-ordinator Leicester City CouncilEducational Psychologist Leicester City Council Ms J Gamble Speech and Language Therapist (CCHS)(CCHS) Ms M Gornall Senior Educational Psychologist Leicester City Council Mrs L Hardcastle Parent Representative and member of Dr M Hodgkinson Consultant Child & Adolescent Psychologist (CAMHS) Mr C Huddleston Parent Representative Mr B James Principal Educational Psychologist Rutland County Council Dr K Karim Consultant Child & Adolescent Psychiatrist (CAMHS) Ms A Lewis Parent Representative and member of Red Cross Mr J Moran Health Visitor Dr A Shawcross Consultant Community Paediatrician (CCHS)(CCHS) Mr R Westerman Joint Principal Educational Psychologist Leicestershire County Council tReview due 12 months after implementation Page 23 of 24 Autism Spectrum Disorder Pathway for Children and Young People in Leicester, Leicestershire & Rutland March 20099 tReview due 12 months after implementation Page 24 of 24
"Autistic Spectrum Disorder Pathway for Children and Young People"