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A Guideline for the recognition, referral and diagnosis of autism In Children and Young people up to the age of 19 years With draft recommendations from the adult guideline Autism Spectrum Disorder: • A disorder defined by behavioural symptoms. • Impairments in social interaction and social communication combined with restricted repetitive interests and behaviours, often with sensory sensitivities and stereotyped mannerisms. • Manifestations change over time and context and are often associated with other neurodevelopmental, mental/behaviour problems and medical symptoms and conditions. • A neurobiological condition, heterogeneous in manifestation and causation The reason for the guideline • Variation in availability of diagnostic services • Delays in diagnosis affect access to services. • Inequalities of diagnosis eg those with intellectual disability; those with good verbal ability and average or above intellectual ability; Girls; those with a dual language; ‘looked after’ children; those in the Criminal Justice system Context • • • • • • National context Prevalence DSM & ICD diagnostic systems Categories/ dimensions A spectrum Terminology National Context • National Autism Plan • SIGN • Equity and Excellence/The Health and Social Care Bill • DfE--SEN Green Paper • Autism Bill 2009/Autism Act • Autism Strategy (Dec 2010) The Autism Act 2009 A legal requirement on all LAs and Trusts to have: • A lead professional to develop diagnostic and assessment services in every area with a clear pathway to diagnosis • Specialist training for key professionals and improved awareness of autism in frontline staff through training • Assessment of individual needs • Planning relevant services to meet needs including transition to adulthood • Gathering local information about numbers and needs Aim: to improve health and wellbeing of individuals with autism (Fulfilling and Rewarding Lives) Prevalence of autism and Asds • Autism was previously thought to be an uncommon disorder, but is now thought to occur in at least 1% of children. NB 6-14 fold variation in current studies estimating prevalence rates ? Number of children/YP with similar symptoms without an ASD diagnosis DSM 5 and ICD11 • • • • • New revisions of the classification systems Removal of subgroups of ASD Reduction in domains Severity specifiers Expected timing—2012/13 Context • • • • • • National context Prevalence DSM & ICD diagnostic systems Categories/ dimensions A spectrum Terminology Context • • • • • • National context Prevalence DSM & ICD diagnostic systems Categories/ dimensions A spectrum Terminology Guideline 1 for the recognition, referral and diagnosis of autism In Children and Young people up to the age of 19 years The aim • To make a difference to the current recognition and diagnosis of autism . • To make practical recommendations, using an evidence based approach, for ‘front line’ staff for recognition and referral and diagnostic assessment. • To support person centred care and coordinated service delivery for children and families NICE guidelines 2 &3 • 2. Recognition, referral, diagnosis and managment of adults with autism • 3. Management and support of children with autism and their families What did parents want? NAS parent survey 1. 2. 3. 4. A clear pathway pre and post diagnosis Decreased waiting time Improved access to specialists Increased awareness of co-existing mental/physical health problems and the uniqueness of each child’s presentation 5. Improve coordinated approach to diagnosis by different professionals 6. Make diagnosis more collaborative with parents and improve support during and after diagnosis What did Community Paeds say? 1. Do not produce an unworkable guideline or suggest a diagnostic process that increases waiting times 2. Clarify terminology to produce some consistency across professionals noting that strict diagnosis is a ‘where do you draw the line’ problem which may not reflect a child’s needs. 3. Give guidance for difficult differential diagnoses eg attachment disorders and ‘quasi-autism’. 4. Clarify any biomedical investigations needed NICE GDG decisions • To use the term autism in the NICE guideline to refer to ‘autism spectrum disorders’ used as an umbrella term, synonymous with all diagnosed autism spectrum disorders. • To use ICD10 and DSM IV but have regard to the future changes in ICD11 and DSM 5 • To conceptualise diagnostic assessment as a process that considers differential diagnosis, coexisting conditions and enables construction of a profile of the CYPs strengths and weaknesses, so that a plan of needs can be developed taking into account family and educational context. Guideline Key questions: 1. What signs and symptoms should prompt recognition of autism and referral for diagnosis? 2. What is core to autism diagnosis? What tools should be used for autism diagnosis if any? 3. What biomedical investigations should be recommended as part of autism diagnosis 4. What coexisting conditions should be systematically assessed 5. What information/support should the child/YP/parents be given during and following diagnosis Key Recommendations In every area: a strategy group; multi agency, multiprofessional autism including Commissioners, managers and clinicians from health, education and social care, parents/users and the voluntary sector responsible for : 1. Establishing a Lead professional for autism diagnostic assessments for all ages and all levels of intellectual ability 2. Development of a Pathway to diagnostic services 3. Raising awareness of autism through multiagency training 4. Audit 5. Data collection An Autism Team May consist of few or many members who may be part of other teams but have: Autism specific skills and competences in diagnostic assessment Core team membership for each autism diagnostic assessment Doctor (paediatrician or child &adolescent psychiatrist), SLT, Psychologist (EP or Clin), Additional desirable team members: OT, EP or Clin psych –(whichever not above), paed or psychiatrist—(whichever not above) Others depending on local circumstances eg teacher, specialist nurse, social worker Recognition and referral • Awareness raising through multiagency training • Tables of signs& symptoms for various ages • A clear local referral pathway and single point of referral for autism diagnosis age up to 19 • ‘Screening questionnaires’ can be used but no evidence to recommend routine universal use • School information to be sought in all with parental permission-no specific tool recommended CYP guideline-referral Children under 3 years who regress in language and/or social skills In other situations: • Severity, pervasiveness, impact and duration of signs and symptoms • Concern shared by parents and professionals • Presence of factors increasing prevalence of autism • Liklihood of alternative explanation of behaviour Adult Guideline Identification • Persistent difficulties in reciprocal social engagement or social communication AND rigid repetitive behaviours or resistance to change AND one or more of: • Problems in obtaining or maintaining employment or education • Difficulties in initiating ir sustaining social relationships • Previous or current contact with CAMHS or LD services • A neurodevelopmental disorder Adult Guideline-referral for autism assessment Two or more of: • Poor reciprocal social interaction including being aloof, indifferent, social approaches that are naïve or unusual, interactions to fulfil needs only, • Lack of responsiveness to others social approaches • Little or no change in behaviour in response to social situation, • No or limited demonstration of social empathy, • Rigid routines and resistance to change, • Marked repetitive behaviours when under stress or expressing emotion • In average ability clients—can use AQ 10 (score >6) Adult Guideline A comprehensive assessment should be : • Undertaken by professionals who are trained and competent • Be team based drawing on a range of professions and relevant skills • Involve an informant/ family member or other or use documentary evidence of current/past behaviour and early development Case Co-ordinator • A Case coordinator to be appointed from within the team to be point of contact for each CYP and family and signpost support during process of assessment, coordinate information gathering and subsequent care plan The following elements to be included in every autism diagnostic assessment: • detailed enquiry about parent or carer concerns and if appropriate the child or young person’s concerns • a medical history including prenatal, perinatal and family history past and current health conditions • the child's or young person's experiences of home life, education and social care • a developmental history focussing on developmental and behavioural features consistent with ICD-10 or DSM-IV criteria (consider using an autism-specific tool to gather this information) • assessment through interaction with and observation of the child or young person of their social and communicative skills and behaviours focussing on features consistent with ICD-10 or DSM-IV criteria (consider using an autism-specific diagnostic tool to gather this information). • consideration of differential diagnosis The following elements to be included in every autism diagnostic assessment: • A physical examination. • • • No routine medical investigations in autism Genetic tests as advised by local service Other tests according to clinical judgment and symptoms • A systematic assessment of co-existing conditions • communication of assessment findings with parent/carer and where appropriate, the child or young person • A profile of the individual’s strengths, skills, impairments and needs that can be used to create a needs-based management plan taking into account family and educational context. Develop a Profile of strengths, skills, impairments and needs in the following to inform the management plan • • • • • • • • • intellectual ability and learning style academic skills speech, language and communication fine and gross motor skills adaptive behaviour (including self-help skills) mental and emotional health (including self esteem) physical health and nutrition sensory hypo and hyper sensitivities behaviour likely to affect day to day functioning and social participation • socialisation skills. In both the FAMILY and EDUCATIONAL CONTEXT Adult guideline During comprehensive assessment , assess the following risks: • Self harm • Rapid escalation of problems • Harm to others • Self-Neglect • Breakdown of placement • Exploitation or abuse by others Following assessment • Immediate ‘feed-back’ (involving CYP if appropriate) • A written report (a health passport) • (Formulate a management plan including a crisis plan if needed) • Follow up appt within 6 weeks to discuss findings • Disseminate/share findings with all relevant services, with permission, which may include a school visit • Signpost support services for family both statutory and voluntary Principles of Care in guideline • Person centred • Respectful and inclusive/partnership • Professional knowledgeable about autism, course and impact of the condition on the individual, including gap between intellectual skill and adaptive function, and on family • Impact of environment on autism Potential areas for additional costs locally are: • recruitment and training of autism team members. • an increase in the overall volume of referrals to the autism team due to improved recognition • additional costs to communicate the results of autism assessments, for example school visits by autism team Savings •Potential areas for savings locally are: •efficiency savings due to better multiagency working. What is needed to effect change? • Leadership at national regional and local levels • A local strategy group including users • Commissioners contracting for pathways and outcomes • Clinicians/managers working together from health/social care and education • Audit/inspection/tariffs? Translates into • More with the same not more of the same • Change clinical practice • Redesign care pathways • Focus on integrated care • Use workforce as flexibly as possible • Share back office staff and functions While retaining the High quality care : • Patient centred • Specialist Competence • Continuity of care NICE Pathway • The NICE Pathway published in October 2011 covers: • recognising possible autism • referral • assessment • diagnosis Click here to go to NICE Pathways website NHS Evidence To be added- the latest NHS evidence image Visit NHS Evidence for the best available evidence on all aspects of autism Click here to go to the NHS Evidence website