To provide guidance on autism spectrum disorder(ASD)in both children and adults in New Zealand mprove the eath recommendations on the principles of identification,diagnosis and initial assessment of individuals Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation of keydevelopmental,intelltadaiveklorryde a Multidisc 5.Identification of develop tal con ns and ap 6 Farly identification a ASD in adults Differ tial diac osis of d co ation of other possible conditions 9.Identification of sou osis support A formal whole population screening m was nsidered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence and as ent o r young children ne the Royal College rty Par entary Group on nent is av the guelinesbadand to which the reader Date Range for Inclusion of studies : Number of Source Documents Not stated Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group(NZGG)grading system(information on this system can be found at )sa two-tier system wth the olnt: 1.Critical appraisal of individual studies Each relevant study theudya meroe the hecmeo theor very ewcannohehetag 2.Weighing the body of evidence and development of graded recommendations
Guideline Summary NGC-7212 NGC banner Guideline Title Diagnosis and initial assessment of ASD. In: New Zealand autism spectrum disorder guideline. Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Guideline Status This is the current release of the guideline. Scope Disease/Condition(s) Autism spectrum disorder (ASD), including the following subgroups within the spectrum of autism*: l Pervasive developmental disorders (PDD) (as defined in the tenth edition of the International Classification of Diseases [ICD-10] and in the fourth edition of the American Diagnostic and Statistical Manual [DSM-IV]) l Classical autism l Asperger syndrome l PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified in the DSM-IV) *Note: See Appendix 4 of the original guideline document for complete ICD-10 and DSM-IV definitions and diagnostic criteria. Guideline Category Diagnosis Evaluation Clinical Specialty Family Practice Neurology Pediatrics Psychiatry Psychology Speech-Language Pathology Intended Users Advanced Practice Nurses Allied Health Personnel Health Care Providers Nurses Occupational Therapists Patients Physical Therapists Physician Assistants Physicians Psychologists/Non-physician Behavioral Health Clinicians Social Workers Speech-Language Pathologists Utilization Management Guideline Objective(s) l To provide guidance on autism spectrum disorder (ASD) in both children and adults in New Zealand l To provide the best evidence currently available to assist informed decision-making to improve the health, educational and social outcomes for individuals with ASD l To provide recommendations on the principles of identification, diagnosis and initial assessment of individuals with ASD Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation 1. Early identification, assessment and diagnosis of autism spectrum disorder (ASD) in young children (ages 1 to 3 years and ages 4 to 8 years), older children and adolescents (ages >8 years) 2. Assessment of key signs, developmental, intellectual, adaptive and cognitive skills for early identification of ASD 3. Standardised autism, Asperger syndrome, and ASD assessment interviews and schedules 4. Multidisciplinary assessment 5. Identification of developmental concerns and appropriate referral 6. Early identification, assessment, and diagnosis of ASD in adults 7. Differential diagnosis of autism and consideration of other possible conditions 8. Formulation and disclosure of diagnosis 9. Identification of sources of post-diagnosis support A formal whole population screening program was considered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . This is the full version on which this part of the guideline is based and to which the reader should refer for the evidence base and rationale for recommendations. Date Range for Inclusion of Studies For all workstreams, systematic searching was performed until 2004. Papers published after the completion of searching and, in some cases before the search dates, were suggested by members of all workstreams and incorporated in the text and evidence tables, where appropriate. In future updates of the guideline, systematic searching will commence in 2004 to ensure a systematic evaluation of all the literature is achieved. Number of Source Documents Not stated Methods Used to Assess the Quality and Strength of the Evidence Weighting According to a Rating Scheme (Scheme Given) Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group (NZGG) grading system (information on this system can be found at www.nzgg.org.nz ) is a two-tier system with the following steps: 1. Critical appraisal of individual studies Each relevant study was critically appraised using a checklist and was assigned an overall level of evidence, indicating whether the study had met most or all of the criteria in the checklist (+), some of the criteria (~) or very few or none of the criteria (-). 2. Weighing the body of evidence and development of graded recommendations For each clinical question, the relevant body of evidence summarised in evidence tables was considered. Decisions were made on the quality (level of evidence), quantity, consistency, applicability and clinical impact of all the studies forming the body of evidence that were relevant to each question. See the "Rating Scheme for the Strength of the Recommendations" field for definitions. Methods Used to Analyze the Evidence Systematic Review Systematic Review with Evidence Tables Description of the Methods Used to Analyze the Evidence The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the National Autism Plan for Children (NAPC) Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Evidence grades applied by the NAPC guideline were analysed and converted to New Zealand Guidelines Group (NZGG) grades, where possible. No evidence tables were provided for the assessment and diagnosis of children as this section of the guideline was an adaptation of the NAPC UK Guideline. Methods Used to Formulate the Recommendations Expert Consensus Description of Methods Used to Formulate the Recommendations The development of the autism spectrum disorder (ASD) Guideline was initially based on a phased approach where the work was discretely divided amongst three separate workstreams into age bands. This framework was later set aside in 2004 in favour of a more flexible, collaborative, 'whole of life' way of working across all workstreams. In March 2004 a Technical Advisory Group was developed. This group consisted of up to two representatives from each of the three workstreams and the project manager. At specific times during the development of the guideline, expert advisors were also co-opted on to the group, including a New Zealand Guidelines Group (NZGG) representative and technical editors. Consultation The detailed development of the guideline was undertaken by small working groups within each workstream. The workstreams also established advisory development groups to assist in the development and provide wider consultation. Methodology Each workstream used a separate methodology for the development of the guideline. Workstream 1 Workstream 1 was led by the Paediatric Society of New Zealand under contract to the Ministry of Health. The section on diagnosis and assessment of young children in Part 1 of the original guideline document is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism. Further reference was made to the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment developed by the California Department of Developmental Services, 2002. The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the NAPC Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Some areas identified by the AGREE assessment required adaptation to reflect the New Zealand context. Adaptation of the NAPC Guideline was undertaken during face-to-face meetings, audio conferencing and email consultation of drafts. Workstream 3 This workstream, set up by the Ministry of Health and the Disability Services Directorate, was made up of two workstream leaders and a virtual team of ASD subject matter experts from across New Zealand. The writers contributed separate sections, reflecting the different expertise of the team members. The workstream leaders were responsible for half of Part 1 of the original guideline document, the assessment and diagnosis of young people and adults. Rating Scheme for the Strength of the Recommendations Grades of Recommendations Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation To finalise the draft New Zealand Autism Spectrum Disorder (ASD) Guideline, a four-month written consultation process was undertaken from December 2006 to March 2007. Feedback was sought from across the health, education, disability and social service sectors. The consultation process involved a mail-out on request of the draft ASD Guideline and a submission booklet. These documents were also available on the Ministry of Health website, with links from the Ministry of Education website. At the same time, an expert peer review process was undertaken with nine international experts in ASD. The suggestions and references from both processes were analysed to determine whether they provided additional evidence to inform the recommendations of the guideline. Where appropriate, modifications and amendments were made to the draft ASD Guideline. Recommendations Major Recommendations Grades of recommendation (A–C, I) and good practice points (GPP) are defined at the end of the "Major Recommendations" field. Diagnosis and Initial Assessment of Autism Spectrum Disorder (ASD) Identification and Diagnosis Formal criteria for the identification and diagnosis of people with autism spectrum disorder (ASD) are provided in Appendix 4 in the original guideline document. Summary of Recommendations Table. Key Signs for Identification of Children 1–3 Years with ASD [C] Table. Key Signs in Children Aged 4–8 Years with ASD (modified from the NAPC Guideline) [C] Assessment Summary of Recommendations Differential Diagnosis of Autism and Consideration of Other Possible Conditions Summary of Recommendations Formulation, Disclosure of Diagnosis and Post-diagnosis Support Summary of Recommendations Definitions: Grades of Recommendation Recommendations Grade Early identification of children with autism spectrum disorder is essential. Early identification enables early intervention and is likely to lead to better function in later life. B A formal whole population screening programme for the identification of ASD is not recommended. B Health and education professionals should take regular opportunities (at least at 8–12 months, 2–3 years and 4–5 years) to discuss the child's development with parents as part of 'surveillance' to detect and respond rapidly to any developmental concerns. C Age of detection/diagnosis of all developmental problems, including ASD as a specified disorder, should be audited. C Parental inquiries regarding developmental concerns about their child must be taken seriously and addressed appropriately. B Good Practice Points At each health or educational professional encounter, concerns should be elicited regarding child development. GPP All health and education professionals involved in care of children should know referral pathways for those children about whom concerns are raised. GPP All children with ANY of the following findings MUST be referred for a general developmental assessment: l No babble, pointing to or showing of objects or other gesture by 12 months l No meaningful single words by 18 months l No two-word spontaneous (non-echoed or imitated) phrases by 24 months l ANY loss of any language or social skills at ANY age Key signs in children aged 1–3 years (which should prompt referral for a developmental assessment [modified from the United Kingdom National Autism Plan for Children (NAPC) Guideline]: Social impairments: l Lack of social smile and lack of eye contact l Lack of imitation of actions (e.g., clapping) l Deficits in joint attention, such as lack of showing to share interest or involving others in joint play with toys or other objects l Lack of interest in other children or odd approaches to other children l Minimal recognition or responsiveness to another's happiness or distress l Not wanting to be picked up and cuddled l Odd relationships with adults (either too friendly or distant) l Limited variety of imaginative play l Lack of pretend play, especially involving social imagination (i.e., not joining with others in shared imaginary games) l Appearing to be 'in his/her own world' l Failure to initiate simple play with others or participate in early social games l Preference for solitary play activities Communication impairments: l Impairment in language development, especially comprehension l Unusual use of language l Poor response to name l Deficient non-verbal communication (e.g., lack of pointing and difficulty following the pointing of others) l Failure to smile socially to share enjoyment and respond to the smiling of others l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond three years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics Impairment of interests, activities and other behaviours: l Over-liking for sameness and/or inability to cope with changes especially in unstructured setting l Repetitive play with toys (e.g., lining up objects or turning light switches on and off, regardless of scolding) l Over-attentiveness to small visual details (e.g., fascination with spinning wheels) l Repetitive motor mannerisms l Lack of flexible, cooperative imaginative play or creativity (although certain imaginary scenarios, such as those copied from videos or cartoons may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) Other factors which may support a diagnosis of ASD: Over- or under-sensitivity to: l Sound (e.g., has trouble keeping on task with background noise, responds negatively to unexpected/loud noises) l Touch (e.g., discomfort during grooming, avoids getting messy, picky eater, especially regarding certain textures) l Movement (e.g., becomes anxious or distressed when feet leave the ground, or twirls/spins/rocks self frequently during the day) l Visual stimuli (e.g., prefers to be in the dark, feels discomfort or avoids bright lights) l Smells (e.g., seeks out certain smells) Note: These factors in isolation are not indicative of ASD. They are intended to alert professionals to think about the possibility of ASD—whether and when they make a referral will depend on the overall situation. 1. Communication impairments l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond 3 years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics 2. Social impairments: l Inability to join in with the play of other children, or inappropriate attempts at joint play (may manifest as aggressive or disruptive behaviour) l Lack of awareness of classroom 'norms' (criticising teachers; overt unwillingness to cooperate in classroom activities; inability to appreciate/follow current trends, e.g., with regard to other children's dress, style of speech, interests, etc.) l Easily overwhelmed by social and other stimulation l Failure to relate normally to adults (too intense/no relationship) l Showing extreme reactions to invasion of personal space and extreme resistance to being 'hurried' 3. Impairment of interests, activities and behaviours: l Lack of flexible, cooperative imaginative play/creativity (although certain imaginary scenarios, e.g., copied from videos or cartoons, may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) l Inability to cope with change or unstructured situations, even ones that other children enjoy (such as school trips, teachers being away, etc.) l Preoccupation with restricted patterns of interest that are abnormal either in intensity or focus; over-attention to parts of objects 4. Other factors which may support a diagnosis of ASD: l Unusual profile of skills/deficits (e.g., social and motor skills very poorly developed, whilst general knowledge, reading or vocabulary skills are well above chronological/mental age) l Any other evidence of odd behaviours, including over- or under-sensitivity to sound (e.g., has trouble functioning when there is noise around), touch (e.g., difficulties standing in line or close to others, avoids getting messy, or excessively touches people and objects), movement (e.g., avoids playground equipment or moving toys, or seeks all kind of movement, and this interferes with daily routines), visual stimuli (e.g., prefers to be in the dark, discomfort or avoids bright lights) or smells (e.g., deliberately smells objects) l Unusual responses to movement (e.g., toe walking and hand flapping) l Unusual responses to pain l Any significant history of loss of skills Recommendations Grade The initial assessment of children may be undertaken by an individual practitioner. If there are ongoing concerns, a multidisciplinary assessment is recommended. B Preferably, a multidisciplinary team of health care practitioners experienced in ASD should undertake diagnostic assessment of young people and adults suspected of having ASD. In the absence of an assessment team, a health care practitioner trained and highly experienced in ASD may undertake diagnostic assessment. B Formal pathways for diagnostic assessment of young people and adults should be developed. C Diagnostic assessment of young people and adults should be comprehensive (covering all areas listed below), and involve the person concerned in interview and observation. C Standardised autism, Asperger syndrome and ASD assessment interviews and schedules should be used. B Test users should ensure that they are aware of the validity, reliability and appropriateness of tests when assessing people with ASD and take these limitations into account when forming opinions and reporting results. C The assessment of intellectual, adaptive and cognitive skills associated with autism, Asperger syndrome and ASD should be seriously considered and, where possible and appropriate, formally assessed. B Good Practice Points Children identified with a significant developmental concern in the 0–7 year age group should be seen by a developmental or general paediatrician. GPP A developmental services coordinator should be appointed in each local area. This person would manage the referral process for all children about whom there are developmental concerns. GPP All children suspected of having ASD or another developmental problem should have an audiology assessment. GPP If the general developmental assessment suggests an autism spectrum disorder, the developmental services coordinator should arrange a multidisciplinary assessment of the child. GPP Where the local Specialist Assessment Team has found difficulty in making a diagnosis because of atypical or complex presentation, a network of tertiary centres should be provided where children could have a tertiary-level assessment. GPP The psychometric properties of formal ASD assessment tools within the New Zealand population should be further researched. GPP Recommendations Grade Differential diagnosis must be covered during diagnostic assessment. C Differential diagnosis must be thorough and cover all conditions commonly confused with ASD and those known to coexist with ASD. C Health care professionals must have a good understanding of the different forms of expression of ASD symptomatology across developmental stages and the symptomatology of common coexisting and alternative conditions. B Good Practice Points Health care professionals must consult with specialists in areas of diagnostic overlap when issues are not clear. GPP Diagnosis of ASD in itself may be sufficient. Attempts to delineate ASD from Asperger syndrome may not be valid and are not necessary. GPP Recommendations Grade Formulation is the necessary next step from assessment. C Clarity of diagnosis should be the goal of assessment and formulation. C In situations when diagnostic clarity is not possible, an action plan should be developed to attend to areas of complexity and confusion. C All diagnostic assessments should include a detailed written report covering the person's strengths and weaknesses, developmental course, ASD symptoms, recommendations for intervention and information on support networks. C Disclosure of diagnosis of older teens and adults and decisions about the involvement of family and whānau or support people should take into consideration the wishes of the person concerned, privacy issues and their support needs. C Information on ASD and support services should be available at all diagnostic disclosure interviews and through health and disability services. B Sources of post-diagnosis support should be identified for the person with ASD. C Good Practice Points Disclosure of diagnosis of young teens should be family-centred and involve the family and whānau. GPP The need for formal support pathways of post-diagnostic support for newly diagnosed people with ASD should be investigated further. GPP Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Clinical Algorithm(s) Clinical algorithms are provided in the original guideline document for: l Identification and assessment process for children (aged <16 years) who may have autism spectrum disorder (ASD) l Identification and assessment process for young people and adults who may have ASD Evidence Supporting the Recommendations Type of Evidence Supporting the Recommendations The type of supporting evidence is identified and graded for each recommendation (see the "Major Recommendations" field). Benefits/Harms of Implementing the Guideline Recommendations Potential Benefits Implementation of this guideline will help primary care practitioners, education professionals, policy makers, funders, parents, carers, specialists and any others who make provision for individuals with autism spectrum disorder (ASD) to better understand people with ASD and their families, to improve services to people with ASD and their families and to help people better understand the information and theories around ASD and its management. ASD advocacy agencies, professionals and published accounts by people with ASD suggest that the assessment and diagnosis of young people and adults with ASD is important because it: l Prevents or rectifies misdiagnosis l Assists in the identification of appropriate educational options and placements l Assists in vocational choice, and identifies support which may facilitate vocational success l Provides access to appropriate resources, support and assistance l Enables appropriate environmental support l Facilitates contact with other people with ASD l Assists in the identification of support needs of families and whānau l Helps people with ASD to understand themselves l Helps people with ASD to understand other people l Helps other people to understand the person with ASD, including families, partners and employers l Prevents future problems l Minimises isolation by providing access to the ASD community l May lead to the identification of the broader phenotype of ASD in family members Good post-diagnosis support helps the person to: l Understand ASD and how it affects his/her life l Access good-quality ASD information l Discover his or her financial entitlements (if any) l Identify services for specific ASD support l Network with other people with ASD l Source further counselling from appropriately skilled practitioners Potential Harms Not stated Qualifying Statements Qualifying Statements Disclaimer Evidence-based practice guidelines are produced to assist health professionals, educators and consumers make decisions about education and optimum care in specific clinical circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve care. The advice in this guideline is based on epidemiological studies and other research evidence. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process. The recommendations in this guideline do not indicate an exclusive course of treatment or serve as an absolute standard of care or education. While guidelines represent a statement of best practice based on the latest available evidence (at the time of development), they are not intended to replace the professional's judgment in each individual case. Caveat As a result of feedback received during consultation, an additional independent review of applied behaviour analysis (ABA) is currently being undertaken. The purpose of the review is to critically appraise published research about ABA interventions in relation to outcomes for people with autism spectrum disorder (ASD). The current sections of the New Zealand ASD Guideline which relate to ABA will be neither reviewed nor amended until the independent review is completed. The recommendations and evidence from the review will be considered by the ASD Living Guideline Working Group using publicly available criteria that will be applied to all proposed changes to the Living Guideline (see page 16 in the original guideline document for an explanation of the Living Guideline). Interpreting Grades of Evidence In interpreting the grades attached to each recommendation, it is important to note: The strength of evidence grading does not reflect the importance of the recommendation or its direction. Implementation of the Guideline Description of Implementation Strategy Implementation Improvement in outcomes for individuals with autism spectrum disorder (ASD) will only occur with the implementation of the evidence-based recommendations in this guideline. Support and incentives will also need to be built into the implementation strategy. Barriers to implementation, identified in the impact analysis, will provide input for the design of strategies for successful implementation. Impact Analysis An impact analysis has been funded by the Ministries of Health and Education. The primary purpose is to assess the likely impact of implementing the key recommendations in the guideline, which in turn will assist government decisions regarding its implementation. To achieve this, the impact analysis used objective and prospective analysis, identified and prioritised the recommendations at a thematic level, and acknowledged the challenges for consideration in planning implementation. More specifically, the impact analysis involved the following: l A survey of current service provision, supplemented with interviews and focus group meetings l Identification of gaps in services and changes that would be required for implementation l An outline of legislation and policy implications l A thematic analysis of actions required to implement key recommendations The findings of the impact analysis contribute to the plan for implementing the New Zealand ASD Guideline. Implementation Tools Clinical Algorithm Foreign Language Translations Quick Reference Guides/Physician Guides For information about availability, see the Availability of Companion Documents and Patient Resources fields below. Institute of Medicine (IOM) National Healthcare Quality Report Categories IOM Care Need Living with Illness Staying Healthy IOM Domain Effectiveness Patient-centeredness Identifying Information and Availability Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Adaptation The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . Date Released 2008 Mar Guideline Developer(s) New Zealand Ministry of Education - National Government Agency [Non-U.S.] New Zealand Ministry of Health - National Government Agency [Non-U.S.] Source(s) of Funding New Zealand Ministry of Health and New Zealand Ministry of Education Guideline Committee Guideline Development Team Composition of Group That Authored the Guideline Team Members: Angelika Anderson, Former Researcher – Research Centre for Interventions in Teaching and Learning; Kevin Appleton, Child, Adolescent and Adult Psychiatrist, Auckland; Giles Bates, Paediatrician, Midcentral District Health Board, Palmerston North; Tanya Breen (leader of Workstream 3), Consultant Clinical Psychologist, Hamilton; Veronica Casey, Former CEO, Paediatric Society of New Zealand, Dunedin; Matt Eggleston, Child and Adolescent Psychiatrist, New Zealand Branch, Faculty Child & Adolescent Psychiatry, Royal Australia and New Zealand College of Psychiatrists Representative, Christchurch; Monique Faleafa (expert in Pacific peoples' issues), Clinical psychologist/Pacific advisor, Auckland; Jill Ford, Service Manager and occupational therapist, Ministry of Education, Special Education, Blenheim; Andrea Hasselbusch, Occupational therapist, Ministry of Education, Auckland; Lynne Hayes, Speech-language therapist, Ministry of Education and Capital and Coast District Health Board, Wellington; Anne Lethaby, Technical Editor, Independent evidence-based consultant, Santiago, Chile; Dannette Marie (expert in Māori issues), Adjunct Lecturer, Department of Psychology, University of Otago, Dunedin; Rosemary Marks (leader of Workstream 1), Developmental Paediatrician, Auckland District Health Board, Auckland; Andrew Marshall, Developmental Paediatrician, Capital and Coast District Health Board, Wellington; Keryn Mells, Primary teacher and parent member of the Autism Spectrum Disorder Intersectoral Advisory Group, Wellington; Tracey Moore, Project Manager, ASD Guideline, Ministry of Health, Dunedin; David Newman, Developmental Paediatrician, Waikato District Health Board, Hamilton; Sue Robertson (leader of Workstream 3), Project manager for Autism Solutions Ltd and parent for a person with ASD, Auckland; Adrienne Tomkins, Speech-language therapist, ex Special School Principal, Verifier, Eligibility Unit, Ministry of Education, Wellington; Marilyn Watson (leader of Workstream 2), Registered psychologist, Senior Advisor – Autism Spectrum Disorders, Ministry of Education, Special Education, Dunedin Financial Disclosures/Conflicts of Interest Contributors to the Autistic Spectrum Disorder (ASD) Guideline were asked to declare any competing interests. There were no competing interests declared by any contributors to the ASD Guideline. Guideline Status This is the current release of the guideline. Guideline Availability Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Availability of Companion Documents The following is available: l New Zealand autism spectrum disorder. Guideline summary. Wellington (New Zealand): Ministry of Health; 2008. 23 p. Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health (NZMoH) Web site . A Māori version is also available from the NZMoH Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Patient Resources None available NGC Status This NGC summary was completed by ECRI Institute on March 22, 2010. The information was verified by the guideline developer on July 20, 2010. Copyright Statement This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Disclaimer NGC Disclaimer The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site. All guidelines summarized by NGC and hosted on our site are produced under the auspices of medical specialty societies, relevant professional associations, public or private organizations, other government agencies, health care organizations or plans, and similar entities. Guidelines represented on the NGC Web site are submitted by guideline developers, and are screened solely to determine that they meet the NGC Inclusion Criteria which may be found at http://www.guideline.gov/about/inclusioncriteria.aspx. NGC, AHRQ, and its contractor ECRI Institute make no warranties concerning the content or clinical efficacy or effectiveness of the clinical practice guidelines and related materials represented on this site. Moreover, the views and opinions of developers or authors of guidelines represented on this site do not necessarily state or reflect those of NGC, AHRQ, or its contractor ECRI Institute, and inclusion or hosting of guidelines in NGC may not be used for advertising or commercial endorsement purposes. Readers with questions regarding guideline content are directed to contact the guideline developer
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Guideline Summary NGC-7212 NGC banner Guideline Title Diagnosis and initial assessment of ASD. In: New Zealand autism spectrum disorder guideline. Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Guideline Status This is the current release of the guideline. Scope Disease/Condition(s) Autism spectrum disorder (ASD), including the following subgroups within the spectrum of autism*: l Pervasive developmental disorders (PDD) (as defined in the tenth edition of the International Classification of Diseases [ICD-10] and in the fourth edition of the American Diagnostic and Statistical Manual [DSM-IV]) l Classical autism l Asperger syndrome l PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified in the DSM-IV) *Note: See Appendix 4 of the original guideline document for complete ICD-10 and DSM-IV definitions and diagnostic criteria. Guideline Category Diagnosis Evaluation Clinical Specialty Family Practice Neurology Pediatrics Psychiatry Psychology Speech-Language Pathology Intended Users Advanced Practice Nurses Allied Health Personnel Health Care Providers Nurses Occupational Therapists Patients Physical Therapists Physician Assistants Physicians Psychologists/Non-physician Behavioral Health Clinicians Social Workers Speech-Language Pathologists Utilization Management Guideline Objective(s) l To provide guidance on autism spectrum disorder (ASD) in both children and adults in New Zealand l To provide the best evidence currently available to assist informed decision-making to improve the health, educational and social outcomes for individuals with ASD l To provide recommendations on the principles of identification, diagnosis and initial assessment of individuals with ASD Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation 1. Early identification, assessment and diagnosis of autism spectrum disorder (ASD) in young children (ages 1 to 3 years and ages 4 to 8 years), older children and adolescents (ages >8 years) 2. Assessment of key signs, developmental, intellectual, adaptive and cognitive skills for early identification of ASD 3. Standardised autism, Asperger syndrome, and ASD assessment interviews and schedules 4. Multidisciplinary assessment 5. Identification of developmental concerns and appropriate referral 6. Early identification, assessment, and diagnosis of ASD in adults 7. Differential diagnosis of autism and consideration of other possible conditions 8. Formulation and disclosure of diagnosis 9. Identification of sources of post-diagnosis support A formal whole population screening program was considered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . This is the full version on which this part of the guideline is based and to which the reader should refer for the evidence base and rationale for recommendations. Date Range for Inclusion of Studies For all workstreams, systematic searching was performed until 2004. Papers published after the completion of searching and, in some cases before the search dates, were suggested by members of all workstreams and incorporated in the text and evidence tables, where appropriate. In future updates of the guideline, systematic searching will commence in 2004 to ensure a systematic evaluation of all the literature is achieved. Number of Source Documents Not stated Methods Used to Assess the Quality and Strength of the Evidence Weighting According to a Rating Scheme (Scheme Given) Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group (NZGG) grading system (information on this system can be found at www.nzgg.org.nz ) is a two-tier system with the following steps: 1. Critical appraisal of individual studies Each relevant study was critically appraised using a checklist and was assigned an overall level of evidence, indicating whether the study had met most or all of the criteria in the checklist (+), some of the criteria (~) or very few or none of the criteria (-). 2. Weighing the body of evidence and development of graded recommendations For each clinical question, the relevant body of evidence summarised in evidence tables was considered. Decisions were made on the quality (level of evidence), quantity, consistency, applicability and clinical impact of all the studies forming the body of evidence that were relevant to each question. See the "Rating Scheme for the Strength of the Recommendations" field for definitions. Methods Used to Analyze the Evidence Systematic Review Systematic Review with Evidence Tables Description of the Methods Used to Analyze the Evidence The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the National Autism Plan for Children (NAPC) Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Evidence grades applied by the NAPC guideline were analysed and converted to New Zealand Guidelines Group (NZGG) grades, where possible. No evidence tables were provided for the assessment and diagnosis of children as this section of the guideline was an adaptation of the NAPC UK Guideline. Methods Used to Formulate the Recommendations Expert Consensus Description of Methods Used to Formulate the Recommendations The development of the autism spectrum disorder (ASD) Guideline was initially based on a phased approach where the work was discretely divided amongst three separate workstreams into age bands. This framework was later set aside in 2004 in favour of a more flexible, collaborative, 'whole of life' way of working across all workstreams. In March 2004 a Technical Advisory Group was developed. This group consisted of up to two representatives from each of the three workstreams and the project manager. At specific times during the development of the guideline, expert advisors were also co-opted on to the group, including a New Zealand Guidelines Group (NZGG) representative and technical editors. Consultation The detailed development of the guideline was undertaken by small working groups within each workstream. The workstreams also established advisory development groups to assist in the development and provide wider consultation. Methodology Each workstream used a separate methodology for the development of the guideline. Workstream 1 Workstream 1 was led by the Paediatric Society of New Zealand under contract to the Ministry of Health. The section on diagnosis and assessment of young children in Part 1 of the original guideline document is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism. Further reference was made to the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment developed by the California Department of Developmental Services, 2002. The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the NAPC Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Some areas identified by the AGREE assessment required adaptation to reflect the New Zealand context. Adaptation of the NAPC Guideline was undertaken during face-to-face meetings, audio conferencing and email consultation of drafts. Workstream 3 This workstream, set up by the Ministry of Health and the Disability Services Directorate, was made up of two workstream leaders and a virtual team of ASD subject matter experts from across New Zealand. The writers contributed separate sections, reflecting the different expertise of the team members. The workstream leaders were responsible for half of Part 1 of the original guideline document, the assessment and diagnosis of young people and adults. Rating Scheme for the Strength of the Recommendations Grades of Recommendations Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation To finalise the draft New Zealand Autism Spectrum Disorder (ASD) Guideline, a four-month written consultation process was undertaken from December 2006 to March 2007. Feedback was sought from across the health, education, disability and social service sectors. The consultation process involved a mail-out on request of the draft ASD Guideline and a submission booklet. These documents were also available on the Ministry of Health website, with links from the Ministry of Education website. At the same time, an expert peer review process was undertaken with nine international experts in ASD. The suggestions and references from both processes were analysed to determine whether they provided additional evidence to inform the recommendations of the guideline. Where appropriate, modifications and amendments were made to the draft ASD Guideline. Recommendations Major Recommendations Grades of recommendation (A–C, I) and good practice points (GPP) are defined at the end of the "Major Recommendations" field. Diagnosis and Initial Assessment of Autism Spectrum Disorder (ASD) Identification and Diagnosis Formal criteria for the identification and diagnosis of people with autism spectrum disorder (ASD) are provided in Appendix 4 in the original guideline document. Summary of Recommendations Table. Key Signs for Identification of Children 1–3 Years with ASD [C] Table. Key Signs in Children Aged 4–8 Years with ASD (modified from the NAPC Guideline) [C] Assessment Summary of Recommendations Differential Diagnosis of Autism and Consideration of Other Possible Conditions Summary of Recommendations Formulation, Disclosure of Diagnosis and Post-diagnosis Support Summary of Recommendations Definitions: Grades of Recommendation Recommendations Grade Early identification of children with autism spectrum disorder is essential. Early identification enables early intervention and is likely to lead to better function in later life. B A formal whole population screening programme for the identification of ASD is not recommended. B Health and education professionals should take regular opportunities (at least at 8–12 months, 2–3 years and 4–5 years) to discuss the child's development with parents as part of 'surveillance' to detect and respond rapidly to any developmental concerns. C Age of detection/diagnosis of all developmental problems, including ASD as a specified disorder, should be audited. C Parental inquiries regarding developmental concerns about their child must be taken seriously and addressed appropriately. B Good Practice Points At each health or educational professional encounter, concerns should be elicited regarding child development. GPP All health and education professionals involved in care of children should know referral pathways for those children about whom concerns are raised. GPP All children with ANY of the following findings MUST be referred for a general developmental assessment: l No babble, pointing to or showing of objects or other gesture by 12 months l No meaningful single words by 18 months l No two-word spontaneous (non-echoed or imitated) phrases by 24 months l ANY loss of any language or social skills at ANY age Key signs in children aged 1–3 years (which should prompt referral for a developmental assessment [modified from the United Kingdom National Autism Plan for Children (NAPC) Guideline]: Social impairments: l Lack of social smile and lack of eye contact l Lack of imitation of actions (e.g., clapping) l Deficits in joint attention, such as lack of showing to share interest or involving others in joint play with toys or other objects l Lack of interest in other children or odd approaches to other children l Minimal recognition or responsiveness to another's happiness or distress l Not wanting to be picked up and cuddled l Odd relationships with adults (either too friendly or distant) l Limited variety of imaginative play l Lack of pretend play, especially involving social imagination (i.e., not joining with others in shared imaginary games) l Appearing to be 'in his/her own world' l Failure to initiate simple play with others or participate in early social games l Preference for solitary play activities Communication impairments: l Impairment in language development, especially comprehension l Unusual use of language l Poor response to name l Deficient non-verbal communication (e.g., lack of pointing and difficulty following the pointing of others) l Failure to smile socially to share enjoyment and respond to the smiling of others l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond three years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics Impairment of interests, activities and other behaviours: l Over-liking for sameness and/or inability to cope with changes especially in unstructured setting l Repetitive play with toys (e.g., lining up objects or turning light switches on and off, regardless of scolding) l Over-attentiveness to small visual details (e.g., fascination with spinning wheels) l Repetitive motor mannerisms l Lack of flexible, cooperative imaginative play or creativity (although certain imaginary scenarios, such as those copied from videos or cartoons may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) Other factors which may support a diagnosis of ASD: Over- or under-sensitivity to: l Sound (e.g., has trouble keeping on task with background noise, responds negatively to unexpected/loud noises) l Touch (e.g., discomfort during grooming, avoids getting messy, picky eater, especially regarding certain textures) l Movement (e.g., becomes anxious or distressed when feet leave the ground, or twirls/spins/rocks self frequently during the day) l Visual stimuli (e.g., prefers to be in the dark, feels discomfort or avoids bright lights) l Smells (e.g., seeks out certain smells) Note: These factors in isolation are not indicative of ASD. They are intended to alert professionals to think about the possibility of ASD—whether and when they make a referral will depend on the overall situation. 1. Communication impairments l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond 3 years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics 2. Social impairments: l Inability to join in with the play of other children, or inappropriate attempts at joint play (may manifest as aggressive or disruptive behaviour) l Lack of awareness of classroom 'norms' (criticising teachers; overt unwillingness to cooperate in classroom activities; inability to appreciate/follow current trends, e.g., with regard to other children's dress, style of speech, interests, etc.) l Easily overwhelmed by social and other stimulation l Failure to relate normally to adults (too intense/no relationship) l Showing extreme reactions to invasion of personal space and extreme resistance to being 'hurried' 3. Impairment of interests, activities and behaviours: l Lack of flexible, cooperative imaginative play/creativity (although certain imaginary scenarios, e.g., copied from videos or cartoons, may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) l Inability to cope with change or unstructured situations, even ones that other children enjoy (such as school trips, teachers being away, etc.) l Preoccupation with restricted patterns of interest that are abnormal either in intensity or focus; over-attention to parts of objects 4. Other factors which may support a diagnosis of ASD: l Unusual profile of skills/deficits (e.g., social and motor skills very poorly developed, whilst general knowledge, reading or vocabulary skills are well above chronological/mental age) l Any other evidence of odd behaviours, including over- or under-sensitivity to sound (e.g., has trouble functioning when there is noise around), touch (e.g., difficulties standing in line or close to others, avoids getting messy, or excessively touches people and objects), movement (e.g., avoids playground equipment or moving toys, or seeks all kind of movement, and this interferes with daily routines), visual stimuli (e.g., prefers to be in the dark, discomfort or avoids bright lights) or smells (e.g., deliberately smells objects) l Unusual responses to movement (e.g., toe walking and hand flapping) l Unusual responses to pain l Any significant history of loss of skills Recommendations Grade The initial assessment of children may be undertaken by an individual practitioner. If there are ongoing concerns, a multidisciplinary assessment is recommended. B Preferably, a multidisciplinary team of health care practitioners experienced in ASD should undertake diagnostic assessment of young people and adults suspected of having ASD. In the absence of an assessment team, a health care practitioner trained and highly experienced in ASD may undertake diagnostic assessment. B Formal pathways for diagnostic assessment of young people and adults should be developed. C Diagnostic assessment of young people and adults should be comprehensive (covering all areas listed below), and involve the person concerned in interview and observation. C Standardised autism, Asperger syndrome and ASD assessment interviews and schedules should be used. B Test users should ensure that they are aware of the validity, reliability and appropriateness of tests when assessing people with ASD and take these limitations into account when forming opinions and reporting results. C The assessment of intellectual, adaptive and cognitive skills associated with autism, Asperger syndrome and ASD should be seriously considered and, where possible and appropriate, formally assessed. B Good Practice Points Children identified with a significant developmental concern in the 0–7 year age group should be seen by a developmental or general paediatrician. GPP A developmental services coordinator should be appointed in each local area. This person would manage the referral process for all children about whom there are developmental concerns. GPP All children suspected of having ASD or another developmental problem should have an audiology assessment. GPP If the general developmental assessment suggests an autism spectrum disorder, the developmental services coordinator should arrange a multidisciplinary assessment of the child. GPP Where the local Specialist Assessment Team has found difficulty in making a diagnosis because of atypical or complex presentation, a network of tertiary centres should be provided where children could have a tertiary-level assessment. GPP The psychometric properties of formal ASD assessment tools within the New Zealand population should be further researched. GPP Recommendations Grade Differential diagnosis must be covered during diagnostic assessment. C Differential diagnosis must be thorough and cover all conditions commonly confused with ASD and those known to coexist with ASD. C Health care professionals must have a good understanding of the different forms of expression of ASD symptomatology across developmental stages and the symptomatology of common coexisting and alternative conditions. B Good Practice Points Health care professionals must consult with specialists in areas of diagnostic overlap when issues are not clear. GPP Diagnosis of ASD in itself may be sufficient. Attempts to delineate ASD from Asperger syndrome may not be valid and are not necessary. GPP Recommendations Grade Formulation is the necessary next step from assessment. C Clarity of diagnosis should be the goal of assessment and formulation. C In situations when diagnostic clarity is not possible, an action plan should be developed to attend to areas of complexity and confusion. C All diagnostic assessments should include a detailed written report covering the person's strengths and weaknesses, developmental course, ASD symptoms, recommendations for intervention and information on support networks. C Disclosure of diagnosis of older teens and adults and decisions about the involvement of family and whānau or support people should take into consideration the wishes of the person concerned, privacy issues and their support needs. C Information on ASD and support services should be available at all diagnostic disclosure interviews and through health and disability services. B Sources of post-diagnosis support should be identified for the person with ASD. C Good Practice Points Disclosure of diagnosis of young teens should be family-centred and involve the family and whānau. GPP The need for formal support pathways of post-diagnostic support for newly diagnosed people with ASD should be investigated further. GPP Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Clinical Algorithm(s) Clinical algorithms are provided in the original guideline document for: l Identification and assessment process for children (aged <16 years) who may have autism spectrum disorder (ASD) l Identification and assessment process for young people and adults who may have ASD Evidence Supporting the Recommendations Type of Evidence Supporting the Recommendations The type of supporting evidence is identified and graded for each recommendation (see the "Major Recommendations" field). Benefits/Harms of Implementing the Guideline Recommendations Potential Benefits Implementation of this guideline will help primary care practitioners, education professionals, policy makers, funders, parents, carers, specialists and any others who make provision for individuals with autism spectrum disorder (ASD) to better understand people with ASD and their families, to improve services to people with ASD and their families and to help people better understand the information and theories around ASD and its management. ASD advocacy agencies, professionals and published accounts by people with ASD suggest that the assessment and diagnosis of young people and adults with ASD is important because it: l Prevents or rectifies misdiagnosis l Assists in the identification of appropriate educational options and placements l Assists in vocational choice, and identifies support which may facilitate vocational success l Provides access to appropriate resources, support and assistance l Enables appropriate environmental support l Facilitates contact with other people with ASD l Assists in the identification of support needs of families and whānau l Helps people with ASD to understand themselves l Helps people with ASD to understand other people l Helps other people to understand the person with ASD, including families, partners and employers l Prevents future problems l Minimises isolation by providing access to the ASD community l May lead to the identification of the broader phenotype of ASD in family members Good post-diagnosis support helps the person to: l Understand ASD and how it affects his/her life l Access good-quality ASD information l Discover his or her financial entitlements (if any) l Identify services for specific ASD support l Network with other people with ASD l Source further counselling from appropriately skilled practitioners Potential Harms Not stated Qualifying Statements Qualifying Statements Disclaimer Evidence-based practice guidelines are produced to assist health professionals, educators and consumers make decisions about education and optimum care in specific clinical circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve care. The advice in this guideline is based on epidemiological studies and other research evidence. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process. The recommendations in this guideline do not indicate an exclusive course of treatment or serve as an absolute standard of care or education. While guidelines represent a statement of best practice based on the latest available evidence (at the time of development), they are not intended to replace the professional's judgment in each individual case. Caveat As a result of feedback received during consultation, an additional independent review of applied behaviour analysis (ABA) is currently being undertaken. The purpose of the review is to critically appraise published research about ABA interventions in relation to outcomes for people with autism spectrum disorder (ASD). The current sections of the New Zealand ASD Guideline which relate to ABA will be neither reviewed nor amended until the independent review is completed. The recommendations and evidence from the review will be considered by the ASD Living Guideline Working Group using publicly available criteria that will be applied to all proposed changes to the Living Guideline (see page 16 in the original guideline document for an explanation of the Living Guideline). Interpreting Grades of Evidence In interpreting the grades attached to each recommendation, it is important to note: The strength of evidence grading does not reflect the importance of the recommendation or its direction. Implementation of the Guideline Description of Implementation Strategy Implementation Improvement in outcomes for individuals with autism spectrum disorder (ASD) will only occur with the implementation of the evidence-based recommendations in this guideline. Support and incentives will also need to be built into the implementation strategy. Barriers to implementation, identified in the impact analysis, will provide input for the design of strategies for successful implementation. Impact Analysis An impact analysis has been funded by the Ministries of Health and Education. The primary purpose is to assess the likely impact of implementing the key recommendations in the guideline, which in turn will assist government decisions regarding its implementation. To achieve this, the impact analysis used objective and prospective analysis, identified and prioritised the recommendations at a thematic level, and acknowledged the challenges for consideration in planning implementation. More specifically, the impact analysis involved the following: l A survey of current service provision, supplemented with interviews and focus group meetings l Identification of gaps in services and changes that would be required for implementation l An outline of legislation and policy implications l A thematic analysis of actions required to implement key recommendations The findings of the impact analysis contribute to the plan for implementing the New Zealand ASD Guideline. Implementation Tools Clinical Algorithm Foreign Language Translations Quick Reference Guides/Physician Guides For information about availability, see the Availability of Companion Documents and Patient Resources fields below. Institute of Medicine (IOM) National Healthcare Quality Report Categories IOM Care Need Living with Illness Staying Healthy IOM Domain Effectiveness Patient-centeredness Identifying Information and Availability Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Adaptation The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . Date Released 2008 Mar Guideline Developer(s) New Zealand Ministry of Education - National Government Agency [Non-U.S.] New Zealand Ministry of Health - National Government Agency [Non-U.S.] Source(s) of Funding New Zealand Ministry of Health and New Zealand Ministry of Education Guideline Committee Guideline Development Team Composition of Group That Authored the Guideline Team Members: Angelika Anderson, Former Researcher – Research Centre for Interventions in Teaching and Learning; Kevin Appleton, Child, Adolescent and Adult Psychiatrist, Auckland; Giles Bates, Paediatrician, Midcentral District Health Board, Palmerston North; Tanya Breen (leader of Workstream 3), Consultant Clinical Psychologist, Hamilton; Veronica Casey, Former CEO, Paediatric Society of New Zealand, Dunedin; Matt Eggleston, Child and Adolescent Psychiatrist, New Zealand Branch, Faculty Child & Adolescent Psychiatry, Royal Australia and New Zealand College of Psychiatrists Representative, Christchurch; Monique Faleafa (expert in Pacific peoples' issues), Clinical psychologist/Pacific advisor, Auckland; Jill Ford, Service Manager and occupational therapist, Ministry of Education, Special Education, Blenheim; Andrea Hasselbusch, Occupational therapist, Ministry of Education, Auckland; Lynne Hayes, Speech-language therapist, Ministry of Education and Capital and Coast District Health Board, Wellington; Anne Lethaby, Technical Editor, Independent evidence-based consultant, Santiago, Chile; Dannette Marie (expert in Māori issues), Adjunct Lecturer, Department of Psychology, University of Otago, Dunedin; Rosemary Marks (leader of Workstream 1), Developmental Paediatrician, Auckland District Health Board, Auckland; Andrew Marshall, Developmental Paediatrician, Capital and Coast District Health Board, Wellington; Keryn Mells, Primary teacher and parent member of the Autism Spectrum Disorder Intersectoral Advisory Group, Wellington; Tracey Moore, Project Manager, ASD Guideline, Ministry of Health, Dunedin; David Newman, Developmental Paediatrician, Waikato District Health Board, Hamilton; Sue Robertson (leader of Workstream 3), Project manager for Autism Solutions Ltd and parent for a person with ASD, Auckland; Adrienne Tomkins, Speech-language therapist, ex Special School Principal, Verifier, Eligibility Unit, Ministry of Education, Wellington; Marilyn Watson (leader of Workstream 2), Registered psychologist, Senior Advisor – Autism Spectrum Disorders, Ministry of Education, Special Education, Dunedin Financial Disclosures/Conflicts of Interest Contributors to the Autistic Spectrum Disorder (ASD) Guideline were asked to declare any competing interests. There were no competing interests declared by any contributors to the ASD Guideline. Guideline Status This is the current release of the guideline. Guideline Availability Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Availability of Companion Documents The following is available: l New Zealand autism spectrum disorder. Guideline summary. Wellington (New Zealand): Ministry of Health; 2008. 23 p. Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health (NZMoH) Web site . A Māori version is also available from the NZMoH Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Patient Resources None available NGC Status This NGC summary was completed by ECRI Institute on March 22, 2010. The information was verified by the guideline developer on July 20, 2010. Copyright Statement This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Disclaimer NGC Disclaimer The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site. All guidelines summarized by NGC and hosted on our site are produced under the auspices of medical specialty societies, relevant professional associations, public or private organizations, other government agencies, health care organizations or plans, and similar entities. Guidelines represented on the NGC Web site are submitted by guideline developers, and are screened solely to determine that they meet the NGC Inclusion Criteria which may be found at http://www.guideline.gov/about/inclusioncriteria.aspx. NGC, AHRQ, and its contractor ECRI Institute make no warranties concerning the content or clinical efficacy or effectiveness of the clinical practice guidelines and related materials represented on this site. Moreover, the views and opinions of developers or authors of guidelines represented on this site do not necessarily state or reflect those of NGC, AHRQ, or its contractor ECRI Institute, and inclusion or hosting of guidelines in NGC may not be used for advertising or commercial endorsement purposes. Readers with questions regarding guideline content are directed to contact the guideline developer
Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation curnsultation ofste n wI D.The suggestions Recommendations Major Recommendations (A-C I)and g practiceonts(PP)are defined at the end of the"Maor sis and Initial As ent of Autism Spectrum Disorder (ASD) Identification and Diagnosis ApelgeegrhglengceiaeadLiagRossofpeoplewithautsmspectnumdisoraer(aso)areprovidedn en with autism spectrum order is essential.Early identification ena s early intervention and is likely to lead to creening programme for the identification of ASD is not recommende B ad's c nts as to any c regard ing developmental co B Table.Key Signs for Identification of Children1-3 Years with ASD [C h ANY of t e To wing fi gs MU ental assessment n-echemiated)phrases ANY loss of any lan at ANY age Inited Kingdom Nat ontac ts in oint att as lack ofs a to share others in oint play with toysor Lack of int shios with adults (either too friendly or distant)
Guideline Summary NGC-7212 NGC banner Guideline Title Diagnosis and initial assessment of ASD. In: New Zealand autism spectrum disorder guideline. Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Guideline Status This is the current release of the guideline. Scope Disease/Condition(s) Autism spectrum disorder (ASD), including the following subgroups within the spectrum of autism*: l Pervasive developmental disorders (PDD) (as defined in the tenth edition of the International Classification of Diseases [ICD-10] and in the fourth edition of the American Diagnostic and Statistical Manual [DSM-IV]) l Classical autism l Asperger syndrome l PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified in the DSM-IV) *Note: See Appendix 4 of the original guideline document for complete ICD-10 and DSM-IV definitions and diagnostic criteria. Guideline Category Diagnosis Evaluation Clinical Specialty Family Practice Neurology Pediatrics Psychiatry Psychology Speech-Language Pathology Intended Users Advanced Practice Nurses Allied Health Personnel Health Care Providers Nurses Occupational Therapists Patients Physical Therapists Physician Assistants Physicians Psychologists/Non-physician Behavioral Health Clinicians Social Workers Speech-Language Pathologists Utilization Management Guideline Objective(s) l To provide guidance on autism spectrum disorder (ASD) in both children and adults in New Zealand l To provide the best evidence currently available to assist informed decision-making to improve the health, educational and social outcomes for individuals with ASD l To provide recommendations on the principles of identification, diagnosis and initial assessment of individuals with ASD Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation 1. Early identification, assessment and diagnosis of autism spectrum disorder (ASD) in young children (ages 1 to 3 years and ages 4 to 8 years), older children and adolescents (ages >8 years) 2. Assessment of key signs, developmental, intellectual, adaptive and cognitive skills for early identification of ASD 3. Standardised autism, Asperger syndrome, and ASD assessment interviews and schedules 4. Multidisciplinary assessment 5. Identification of developmental concerns and appropriate referral 6. Early identification, assessment, and diagnosis of ASD in adults 7. Differential diagnosis of autism and consideration of other possible conditions 8. Formulation and disclosure of diagnosis 9. Identification of sources of post-diagnosis support A formal whole population screening program was considered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . This is the full version on which this part of the guideline is based and to which the reader should refer for the evidence base and rationale for recommendations. Date Range for Inclusion of Studies For all workstreams, systematic searching was performed until 2004. Papers published after the completion of searching and, in some cases before the search dates, were suggested by members of all workstreams and incorporated in the text and evidence tables, where appropriate. In future updates of the guideline, systematic searching will commence in 2004 to ensure a systematic evaluation of all the literature is achieved. Number of Source Documents Not stated Methods Used to Assess the Quality and Strength of the Evidence Weighting According to a Rating Scheme (Scheme Given) Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group (NZGG) grading system (information on this system can be found at www.nzgg.org.nz ) is a two-tier system with the following steps: 1. Critical appraisal of individual studies Each relevant study was critically appraised using a checklist and was assigned an overall level of evidence, indicating whether the study had met most or all of the criteria in the checklist (+), some of the criteria (~) or very few or none of the criteria (-). 2. Weighing the body of evidence and development of graded recommendations For each clinical question, the relevant body of evidence summarised in evidence tables was considered. Decisions were made on the quality (level of evidence), quantity, consistency, applicability and clinical impact of all the studies forming the body of evidence that were relevant to each question. See the "Rating Scheme for the Strength of the Recommendations" field for definitions. Methods Used to Analyze the Evidence Systematic Review Systematic Review with Evidence Tables Description of the Methods Used to Analyze the Evidence The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the National Autism Plan for Children (NAPC) Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Evidence grades applied by the NAPC guideline were analysed and converted to New Zealand Guidelines Group (NZGG) grades, where possible. No evidence tables were provided for the assessment and diagnosis of children as this section of the guideline was an adaptation of the NAPC UK Guideline. Methods Used to Formulate the Recommendations Expert Consensus Description of Methods Used to Formulate the Recommendations The development of the autism spectrum disorder (ASD) Guideline was initially based on a phased approach where the work was discretely divided amongst three separate workstreams into age bands. This framework was later set aside in 2004 in favour of a more flexible, collaborative, 'whole of life' way of working across all workstreams. In March 2004 a Technical Advisory Group was developed. This group consisted of up to two representatives from each of the three workstreams and the project manager. At specific times during the development of the guideline, expert advisors were also co-opted on to the group, including a New Zealand Guidelines Group (NZGG) representative and technical editors. Consultation The detailed development of the guideline was undertaken by small working groups within each workstream. The workstreams also established advisory development groups to assist in the development and provide wider consultation. Methodology Each workstream used a separate methodology for the development of the guideline. Workstream 1 Workstream 1 was led by the Paediatric Society of New Zealand under contract to the Ministry of Health. The section on diagnosis and assessment of young children in Part 1 of the original guideline document is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism. Further reference was made to the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment developed by the California Department of Developmental Services, 2002. The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the NAPC Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Some areas identified by the AGREE assessment required adaptation to reflect the New Zealand context. Adaptation of the NAPC Guideline was undertaken during face-to-face meetings, audio conferencing and email consultation of drafts. Workstream 3 This workstream, set up by the Ministry of Health and the Disability Services Directorate, was made up of two workstream leaders and a virtual team of ASD subject matter experts from across New Zealand. The writers contributed separate sections, reflecting the different expertise of the team members. The workstream leaders were responsible for half of Part 1 of the original guideline document, the assessment and diagnosis of young people and adults. Rating Scheme for the Strength of the Recommendations Grades of Recommendations Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation To finalise the draft New Zealand Autism Spectrum Disorder (ASD) Guideline, a four-month written consultation process was undertaken from December 2006 to March 2007. Feedback was sought from across the health, education, disability and social service sectors. The consultation process involved a mail-out on request of the draft ASD Guideline and a submission booklet. These documents were also available on the Ministry of Health website, with links from the Ministry of Education website. At the same time, an expert peer review process was undertaken with nine international experts in ASD. The suggestions and references from both processes were analysed to determine whether they provided additional evidence to inform the recommendations of the guideline. Where appropriate, modifications and amendments were made to the draft ASD Guideline. Recommendations Major Recommendations Grades of recommendation (A–C, I) and good practice points (GPP) are defined at the end of the "Major Recommendations" field. Diagnosis and Initial Assessment of Autism Spectrum Disorder (ASD) Identification and Diagnosis Formal criteria for the identification and diagnosis of people with autism spectrum disorder (ASD) are provided in Appendix 4 in the original guideline document. Summary of Recommendations Table. Key Signs for Identification of Children 1–3 Years with ASD [C] Table. Key Signs in Children Aged 4–8 Years with ASD (modified from the NAPC Guideline) [C] Assessment Summary of Recommendations Differential Diagnosis of Autism and Consideration of Other Possible Conditions Summary of Recommendations Formulation, Disclosure of Diagnosis and Post-diagnosis Support Summary of Recommendations Definitions: Grades of Recommendation Recommendations Grade Early identification of children with autism spectrum disorder is essential. Early identification enables early intervention and is likely to lead to better function in later life. B A formal whole population screening programme for the identification of ASD is not recommended. B Health and education professionals should take regular opportunities (at least at 8–12 months, 2–3 years and 4–5 years) to discuss the child's development with parents as part of 'surveillance' to detect and respond rapidly to any developmental concerns. C Age of detection/diagnosis of all developmental problems, including ASD as a specified disorder, should be audited. C Parental inquiries regarding developmental concerns about their child must be taken seriously and addressed appropriately. B Good Practice Points At each health or educational professional encounter, concerns should be elicited regarding child development. GPP All health and education professionals involved in care of children should know referral pathways for those children about whom concerns are raised. GPP All children with ANY of the following findings MUST be referred for a general developmental assessment: l No babble, pointing to or showing of objects or other gesture by 12 months l No meaningful single words by 18 months l No two-word spontaneous (non-echoed or imitated) phrases by 24 months l ANY loss of any language or social skills at ANY age Key signs in children aged 1–3 years (which should prompt referral for a developmental assessment [modified from the United Kingdom National Autism Plan for Children (NAPC) Guideline]: Social impairments: l Lack of social smile and lack of eye contact l Lack of imitation of actions (e.g., clapping) l Deficits in joint attention, such as lack of showing to share interest or involving others in joint play with toys or other objects l Lack of interest in other children or odd approaches to other children l Minimal recognition or responsiveness to another's happiness or distress l Not wanting to be picked up and cuddled l Odd relationships with adults (either too friendly or distant) l Limited variety of imaginative play l Lack of pretend play, especially involving social imagination (i.e., not joining with others in shared imaginary games) l Appearing to be 'in his/her own world' l Failure to initiate simple play with others or participate in early social games l Preference for solitary play activities Communication impairments: l Impairment in language development, especially comprehension l Unusual use of language l Poor response to name l Deficient non-verbal communication (e.g., lack of pointing and difficulty following the pointing of others) l Failure to smile socially to share enjoyment and respond to the smiling of others l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond three years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics Impairment of interests, activities and other behaviours: l Over-liking for sameness and/or inability to cope with changes especially in unstructured setting l Repetitive play with toys (e.g., lining up objects or turning light switches on and off, regardless of scolding) l Over-attentiveness to small visual details (e.g., fascination with spinning wheels) l Repetitive motor mannerisms l Lack of flexible, cooperative imaginative play or creativity (although certain imaginary scenarios, such as those copied from videos or cartoons may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) Other factors which may support a diagnosis of ASD: Over- or under-sensitivity to: l Sound (e.g., has trouble keeping on task with background noise, responds negatively to unexpected/loud noises) l Touch (e.g., discomfort during grooming, avoids getting messy, picky eater, especially regarding certain textures) l Movement (e.g., becomes anxious or distressed when feet leave the ground, or twirls/spins/rocks self frequently during the day) l Visual stimuli (e.g., prefers to be in the dark, feels discomfort or avoids bright lights) l Smells (e.g., seeks out certain smells) Note: These factors in isolation are not indicative of ASD. They are intended to alert professionals to think about the possibility of ASD—whether and when they make a referral will depend on the overall situation. 1. Communication impairments l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond 3 years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics 2. Social impairments: l Inability to join in with the play of other children, or inappropriate attempts at joint play (may manifest as aggressive or disruptive behaviour) l Lack of awareness of classroom 'norms' (criticising teachers; overt unwillingness to cooperate in classroom activities; inability to appreciate/follow current trends, e.g., with regard to other children's dress, style of speech, interests, etc.) l Easily overwhelmed by social and other stimulation l Failure to relate normally to adults (too intense/no relationship) l Showing extreme reactions to invasion of personal space and extreme resistance to being 'hurried' 3. Impairment of interests, activities and behaviours: l Lack of flexible, cooperative imaginative play/creativity (although certain imaginary scenarios, e.g., copied from videos or cartoons, may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) l Inability to cope with change or unstructured situations, even ones that other children enjoy (such as school trips, teachers being away, etc.) l Preoccupation with restricted patterns of interest that are abnormal either in intensity or focus; over-attention to parts of objects 4. Other factors which may support a diagnosis of ASD: l Unusual profile of skills/deficits (e.g., social and motor skills very poorly developed, whilst general knowledge, reading or vocabulary skills are well above chronological/mental age) l Any other evidence of odd behaviours, including over- or under-sensitivity to sound (e.g., has trouble functioning when there is noise around), touch (e.g., difficulties standing in line or close to others, avoids getting messy, or excessively touches people and objects), movement (e.g., avoids playground equipment or moving toys, or seeks all kind of movement, and this interferes with daily routines), visual stimuli (e.g., prefers to be in the dark, discomfort or avoids bright lights) or smells (e.g., deliberately smells objects) l Unusual responses to movement (e.g., toe walking and hand flapping) l Unusual responses to pain l Any significant history of loss of skills Recommendations Grade The initial assessment of children may be undertaken by an individual practitioner. If there are ongoing concerns, a multidisciplinary assessment is recommended. B Preferably, a multidisciplinary team of health care practitioners experienced in ASD should undertake diagnostic assessment of young people and adults suspected of having ASD. In the absence of an assessment team, a health care practitioner trained and highly experienced in ASD may undertake diagnostic assessment. B Formal pathways for diagnostic assessment of young people and adults should be developed. C Diagnostic assessment of young people and adults should be comprehensive (covering all areas listed below), and involve the person concerned in interview and observation. C Standardised autism, Asperger syndrome and ASD assessment interviews and schedules should be used. B Test users should ensure that they are aware of the validity, reliability and appropriateness of tests when assessing people with ASD and take these limitations into account when forming opinions and reporting results. C The assessment of intellectual, adaptive and cognitive skills associated with autism, Asperger syndrome and ASD should be seriously considered and, where possible and appropriate, formally assessed. B Good Practice Points Children identified with a significant developmental concern in the 0–7 year age group should be seen by a developmental or general paediatrician. GPP A developmental services coordinator should be appointed in each local area. This person would manage the referral process for all children about whom there are developmental concerns. GPP All children suspected of having ASD or another developmental problem should have an audiology assessment. GPP If the general developmental assessment suggests an autism spectrum disorder, the developmental services coordinator should arrange a multidisciplinary assessment of the child. GPP Where the local Specialist Assessment Team has found difficulty in making a diagnosis because of atypical or complex presentation, a network of tertiary centres should be provided where children could have a tertiary-level assessment. GPP The psychometric properties of formal ASD assessment tools within the New Zealand population should be further researched. GPP Recommendations Grade Differential diagnosis must be covered during diagnostic assessment. C Differential diagnosis must be thorough and cover all conditions commonly confused with ASD and those known to coexist with ASD. C Health care professionals must have a good understanding of the different forms of expression of ASD symptomatology across developmental stages and the symptomatology of common coexisting and alternative conditions. B Good Practice Points Health care professionals must consult with specialists in areas of diagnostic overlap when issues are not clear. GPP Diagnosis of ASD in itself may be sufficient. Attempts to delineate ASD from Asperger syndrome may not be valid and are not necessary. GPP Recommendations Grade Formulation is the necessary next step from assessment. C Clarity of diagnosis should be the goal of assessment and formulation. C In situations when diagnostic clarity is not possible, an action plan should be developed to attend to areas of complexity and confusion. C All diagnostic assessments should include a detailed written report covering the person's strengths and weaknesses, developmental course, ASD symptoms, recommendations for intervention and information on support networks. C Disclosure of diagnosis of older teens and adults and decisions about the involvement of family and whānau or support people should take into consideration the wishes of the person concerned, privacy issues and their support needs. C Information on ASD and support services should be available at all diagnostic disclosure interviews and through health and disability services. B Sources of post-diagnosis support should be identified for the person with ASD. C Good Practice Points Disclosure of diagnosis of young teens should be family-centred and involve the family and whānau. GPP The need for formal support pathways of post-diagnostic support for newly diagnosed people with ASD should be investigated further. GPP Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Clinical Algorithm(s) Clinical algorithms are provided in the original guideline document for: l Identification and assessment process for children (aged <16 years) who may have autism spectrum disorder (ASD) l Identification and assessment process for young people and adults who may have ASD Evidence Supporting the Recommendations Type of Evidence Supporting the Recommendations The type of supporting evidence is identified and graded for each recommendation (see the "Major Recommendations" field). Benefits/Harms of Implementing the Guideline Recommendations Potential Benefits Implementation of this guideline will help primary care practitioners, education professionals, policy makers, funders, parents, carers, specialists and any others who make provision for individuals with autism spectrum disorder (ASD) to better understand people with ASD and their families, to improve services to people with ASD and their families and to help people better understand the information and theories around ASD and its management. ASD advocacy agencies, professionals and published accounts by people with ASD suggest that the assessment and diagnosis of young people and adults with ASD is important because it: l Prevents or rectifies misdiagnosis l Assists in the identification of appropriate educational options and placements l Assists in vocational choice, and identifies support which may facilitate vocational success l Provides access to appropriate resources, support and assistance l Enables appropriate environmental support l Facilitates contact with other people with ASD l Assists in the identification of support needs of families and whānau l Helps people with ASD to understand themselves l Helps people with ASD to understand other people l Helps other people to understand the person with ASD, including families, partners and employers l Prevents future problems l Minimises isolation by providing access to the ASD community l May lead to the identification of the broader phenotype of ASD in family members Good post-diagnosis support helps the person to: l Understand ASD and how it affects his/her life l Access good-quality ASD information l Discover his or her financial entitlements (if any) l Identify services for specific ASD support l Network with other people with ASD l Source further counselling from appropriately skilled practitioners Potential Harms Not stated Qualifying Statements Qualifying Statements Disclaimer Evidence-based practice guidelines are produced to assist health professionals, educators and consumers make decisions about education and optimum care in specific clinical circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve care. The advice in this guideline is based on epidemiological studies and other research evidence. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process. The recommendations in this guideline do not indicate an exclusive course of treatment or serve as an absolute standard of care or education. While guidelines represent a statement of best practice based on the latest available evidence (at the time of development), they are not intended to replace the professional's judgment in each individual case. Caveat As a result of feedback received during consultation, an additional independent review of applied behaviour analysis (ABA) is currently being undertaken. The purpose of the review is to critically appraise published research about ABA interventions in relation to outcomes for people with autism spectrum disorder (ASD). The current sections of the New Zealand ASD Guideline which relate to ABA will be neither reviewed nor amended until the independent review is completed. The recommendations and evidence from the review will be considered by the ASD Living Guideline Working Group using publicly available criteria that will be applied to all proposed changes to the Living Guideline (see page 16 in the original guideline document for an explanation of the Living Guideline). Interpreting Grades of Evidence In interpreting the grades attached to each recommendation, it is important to note: The strength of evidence grading does not reflect the importance of the recommendation or its direction. Implementation of the Guideline Description of Implementation Strategy Implementation Improvement in outcomes for individuals with autism spectrum disorder (ASD) will only occur with the implementation of the evidence-based recommendations in this guideline. Support and incentives will also need to be built into the implementation strategy. Barriers to implementation, identified in the impact analysis, will provide input for the design of strategies for successful implementation. Impact Analysis An impact analysis has been funded by the Ministries of Health and Education. The primary purpose is to assess the likely impact of implementing the key recommendations in the guideline, which in turn will assist government decisions regarding its implementation. To achieve this, the impact analysis used objective and prospective analysis, identified and prioritised the recommendations at a thematic level, and acknowledged the challenges for consideration in planning implementation. More specifically, the impact analysis involved the following: l A survey of current service provision, supplemented with interviews and focus group meetings l Identification of gaps in services and changes that would be required for implementation l An outline of legislation and policy implications l A thematic analysis of actions required to implement key recommendations The findings of the impact analysis contribute to the plan for implementing the New Zealand ASD Guideline. Implementation Tools Clinical Algorithm Foreign Language Translations Quick Reference Guides/Physician Guides For information about availability, see the Availability of Companion Documents and Patient Resources fields below. Institute of Medicine (IOM) National Healthcare Quality Report Categories IOM Care Need Living with Illness Staying Healthy IOM Domain Effectiveness Patient-centeredness Identifying Information and Availability Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Adaptation The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . Date Released 2008 Mar Guideline Developer(s) New Zealand Ministry of Education - National Government Agency [Non-U.S.] New Zealand Ministry of Health - National Government Agency [Non-U.S.] Source(s) of Funding New Zealand Ministry of Health and New Zealand Ministry of Education Guideline Committee Guideline Development Team Composition of Group That Authored the Guideline Team Members: Angelika Anderson, Former Researcher – Research Centre for Interventions in Teaching and Learning; Kevin Appleton, Child, Adolescent and Adult Psychiatrist, Auckland; Giles Bates, Paediatrician, Midcentral District Health Board, Palmerston North; Tanya Breen (leader of Workstream 3), Consultant Clinical Psychologist, Hamilton; Veronica Casey, Former CEO, Paediatric Society of New Zealand, Dunedin; Matt Eggleston, Child and Adolescent Psychiatrist, New Zealand Branch, Faculty Child & Adolescent Psychiatry, Royal Australia and New Zealand College of Psychiatrists Representative, Christchurch; Monique Faleafa (expert in Pacific peoples' issues), Clinical psychologist/Pacific advisor, Auckland; Jill Ford, Service Manager and occupational therapist, Ministry of Education, Special Education, Blenheim; Andrea Hasselbusch, Occupational therapist, Ministry of Education, Auckland; Lynne Hayes, Speech-language therapist, Ministry of Education and Capital and Coast District Health Board, Wellington; Anne Lethaby, Technical Editor, Independent evidence-based consultant, Santiago, Chile; Dannette Marie (expert in Māori issues), Adjunct Lecturer, Department of Psychology, University of Otago, Dunedin; Rosemary Marks (leader of Workstream 1), Developmental Paediatrician, Auckland District Health Board, Auckland; Andrew Marshall, Developmental Paediatrician, Capital and Coast District Health Board, Wellington; Keryn Mells, Primary teacher and parent member of the Autism Spectrum Disorder Intersectoral Advisory Group, Wellington; Tracey Moore, Project Manager, ASD Guideline, Ministry of Health, Dunedin; David Newman, Developmental Paediatrician, Waikato District Health Board, Hamilton; Sue Robertson (leader of Workstream 3), Project manager for Autism Solutions Ltd and parent for a person with ASD, Auckland; Adrienne Tomkins, Speech-language therapist, ex Special School Principal, Verifier, Eligibility Unit, Ministry of Education, Wellington; Marilyn Watson (leader of Workstream 2), Registered psychologist, Senior Advisor – Autism Spectrum Disorders, Ministry of Education, Special Education, Dunedin Financial Disclosures/Conflicts of Interest Contributors to the Autistic Spectrum Disorder (ASD) Guideline were asked to declare any competing interests. There were no competing interests declared by any contributors to the ASD Guideline. Guideline Status This is the current release of the guideline. Guideline Availability Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Availability of Companion Documents The following is available: l New Zealand autism spectrum disorder. Guideline summary. Wellington (New Zealand): Ministry of Health; 2008. 23 p. Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health (NZMoH) Web site . A Māori version is also available from the NZMoH Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Patient Resources None available NGC Status This NGC summary was completed by ECRI Institute on March 22, 2010. The information was verified by the guideline developer on July 20, 2010. Copyright Statement This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Disclaimer NGC Disclaimer The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site. All guidelines summarized by NGC and hosted on our site are produced under the auspices of medical specialty societies, relevant professional associations, public or private organizations, other government agencies, health care organizations or plans, and similar entities. Guidelines represented on the NGC Web site are submitted by guideline developers, and are screened solely to determine that they meet the NGC Inclusion Criteria which may be found at http://www.guideline.gov/about/inclusioncriteria.aspx. NGC, AHRQ, and its contractor ECRI Institute make no warranties concerning the content or clinical efficacy or effectiveness of the clinical practice guidelines and related materials represented on this site. Moreover, the views and opinions of developers or authors of guidelines represented on this site do not necessarily state or reflect those of NGC, AHRQ, or its contractor ECRI Institute, and inclusion or hosting of guidelines in NGC may not be used for advertising or commercial endorsement purposes. Readers with questions regarding guideline content are directed to contact the guideline developer
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Guideline Summary NGC-7212 NGC banner Guideline Title Diagnosis and initial assessment of ASD. In: New Zealand autism spectrum disorder guideline. Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Guideline Status This is the current release of the guideline. Scope Disease/Condition(s) Autism spectrum disorder (ASD), including the following subgroups within the spectrum of autism*: l Pervasive developmental disorders (PDD) (as defined in the tenth edition of the International Classification of Diseases [ICD-10] and in the fourth edition of the American Diagnostic and Statistical Manual [DSM-IV]) l Classical autism l Asperger syndrome l PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified in the DSM-IV) *Note: See Appendix 4 of the original guideline document for complete ICD-10 and DSM-IV definitions and diagnostic criteria. Guideline Category Diagnosis Evaluation Clinical Specialty Family Practice Neurology Pediatrics Psychiatry Psychology Speech-Language Pathology Intended Users Advanced Practice Nurses Allied Health Personnel Health Care Providers Nurses Occupational Therapists Patients Physical Therapists Physician Assistants Physicians Psychologists/Non-physician Behavioral Health Clinicians Social Workers Speech-Language Pathologists Utilization Management Guideline Objective(s) l To provide guidance on autism spectrum disorder (ASD) in both children and adults in New Zealand l To provide the best evidence currently available to assist informed decision-making to improve the health, educational and social outcomes for individuals with ASD l To provide recommendations on the principles of identification, diagnosis and initial assessment of individuals with ASD Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation 1. Early identification, assessment and diagnosis of autism spectrum disorder (ASD) in young children (ages 1 to 3 years and ages 4 to 8 years), older children and adolescents (ages >8 years) 2. Assessment of key signs, developmental, intellectual, adaptive and cognitive skills for early identification of ASD 3. Standardised autism, Asperger syndrome, and ASD assessment interviews and schedules 4. Multidisciplinary assessment 5. Identification of developmental concerns and appropriate referral 6. Early identification, assessment, and diagnosis of ASD in adults 7. Differential diagnosis of autism and consideration of other possible conditions 8. Formulation and disclosure of diagnosis 9. Identification of sources of post-diagnosis support A formal whole population screening program was considered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . This is the full version on which this part of the guideline is based and to which the reader should refer for the evidence base and rationale for recommendations. Date Range for Inclusion of Studies For all workstreams, systematic searching was performed until 2004. Papers published after the completion of searching and, in some cases before the search dates, were suggested by members of all workstreams and incorporated in the text and evidence tables, where appropriate. In future updates of the guideline, systematic searching will commence in 2004 to ensure a systematic evaluation of all the literature is achieved. Number of Source Documents Not stated Methods Used to Assess the Quality and Strength of the Evidence Weighting According to a Rating Scheme (Scheme Given) Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group (NZGG) grading system (information on this system can be found at www.nzgg.org.nz ) is a two-tier system with the following steps: 1. Critical appraisal of individual studies Each relevant study was critically appraised using a checklist and was assigned an overall level of evidence, indicating whether the study had met most or all of the criteria in the checklist (+), some of the criteria (~) or very few or none of the criteria (-). 2. Weighing the body of evidence and development of graded recommendations For each clinical question, the relevant body of evidence summarised in evidence tables was considered. Decisions were made on the quality (level of evidence), quantity, consistency, applicability and clinical impact of all the studies forming the body of evidence that were relevant to each question. See the "Rating Scheme for the Strength of the Recommendations" field for definitions. Methods Used to Analyze the Evidence Systematic Review Systematic Review with Evidence Tables Description of the Methods Used to Analyze the Evidence The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the National Autism Plan for Children (NAPC) Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Evidence grades applied by the NAPC guideline were analysed and converted to New Zealand Guidelines Group (NZGG) grades, where possible. No evidence tables were provided for the assessment and diagnosis of children as this section of the guideline was an adaptation of the NAPC UK Guideline. Methods Used to Formulate the Recommendations Expert Consensus Description of Methods Used to Formulate the Recommendations The development of the autism spectrum disorder (ASD) Guideline was initially based on a phased approach where the work was discretely divided amongst three separate workstreams into age bands. This framework was later set aside in 2004 in favour of a more flexible, collaborative, 'whole of life' way of working across all workstreams. In March 2004 a Technical Advisory Group was developed. This group consisted of up to two representatives from each of the three workstreams and the project manager. At specific times during the development of the guideline, expert advisors were also co-opted on to the group, including a New Zealand Guidelines Group (NZGG) representative and technical editors. Consultation The detailed development of the guideline was undertaken by small working groups within each workstream. The workstreams also established advisory development groups to assist in the development and provide wider consultation. Methodology Each workstream used a separate methodology for the development of the guideline. Workstream 1 Workstream 1 was led by the Paediatric Society of New Zealand under contract to the Ministry of Health. The section on diagnosis and assessment of young children in Part 1 of the original guideline document is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism. Further reference was made to the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment developed by the California Department of Developmental Services, 2002. The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the NAPC Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Some areas identified by the AGREE assessment required adaptation to reflect the New Zealand context. Adaptation of the NAPC Guideline was undertaken during face-to-face meetings, audio conferencing and email consultation of drafts. Workstream 3 This workstream, set up by the Ministry of Health and the Disability Services Directorate, was made up of two workstream leaders and a virtual team of ASD subject matter experts from across New Zealand. The writers contributed separate sections, reflecting the different expertise of the team members. The workstream leaders were responsible for half of Part 1 of the original guideline document, the assessment and diagnosis of young people and adults. Rating Scheme for the Strength of the Recommendations Grades of Recommendations Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation To finalise the draft New Zealand Autism Spectrum Disorder (ASD) Guideline, a four-month written consultation process was undertaken from December 2006 to March 2007. Feedback was sought from across the health, education, disability and social service sectors. The consultation process involved a mail-out on request of the draft ASD Guideline and a submission booklet. These documents were also available on the Ministry of Health website, with links from the Ministry of Education website. At the same time, an expert peer review process was undertaken with nine international experts in ASD. The suggestions and references from both processes were analysed to determine whether they provided additional evidence to inform the recommendations of the guideline. Where appropriate, modifications and amendments were made to the draft ASD Guideline. Recommendations Major Recommendations Grades of recommendation (A–C, I) and good practice points (GPP) are defined at the end of the "Major Recommendations" field. Diagnosis and Initial Assessment of Autism Spectrum Disorder (ASD) Identification and Diagnosis Formal criteria for the identification and diagnosis of people with autism spectrum disorder (ASD) are provided in Appendix 4 in the original guideline document. Summary of Recommendations Table. Key Signs for Identification of Children 1–3 Years with ASD [C] Table. Key Signs in Children Aged 4–8 Years with ASD (modified from the NAPC Guideline) [C] Assessment Summary of Recommendations Differential Diagnosis of Autism and Consideration of Other Possible Conditions Summary of Recommendations Formulation, Disclosure of Diagnosis and Post-diagnosis Support Summary of Recommendations Definitions: Grades of Recommendation Recommendations Grade Early identification of children with autism spectrum disorder is essential. Early identification enables early intervention and is likely to lead to better function in later life. B A formal whole population screening programme for the identification of ASD is not recommended. B Health and education professionals should take regular opportunities (at least at 8–12 months, 2–3 years and 4–5 years) to discuss the child's development with parents as part of 'surveillance' to detect and respond rapidly to any developmental concerns. C Age of detection/diagnosis of all developmental problems, including ASD as a specified disorder, should be audited. C Parental inquiries regarding developmental concerns about their child must be taken seriously and addressed appropriately. B Good Practice Points At each health or educational professional encounter, concerns should be elicited regarding child development. GPP All health and education professionals involved in care of children should know referral pathways for those children about whom concerns are raised. GPP All children with ANY of the following findings MUST be referred for a general developmental assessment: l No babble, pointing to or showing of objects or other gesture by 12 months l No meaningful single words by 18 months l No two-word spontaneous (non-echoed or imitated) phrases by 24 months l ANY loss of any language or social skills at ANY age Key signs in children aged 1–3 years (which should prompt referral for a developmental assessment [modified from the United Kingdom National Autism Plan for Children (NAPC) Guideline]: Social impairments: l Lack of social smile and lack of eye contact l Lack of imitation of actions (e.g., clapping) l Deficits in joint attention, such as lack of showing to share interest or involving others in joint play with toys or other objects l Lack of interest in other children or odd approaches to other children l Minimal recognition or responsiveness to another's happiness or distress l Not wanting to be picked up and cuddled l Odd relationships with adults (either too friendly or distant) l Limited variety of imaginative play l Lack of pretend play, especially involving social imagination (i.e., not joining with others in shared imaginary games) l Appearing to be 'in his/her own world' l Failure to initiate simple play with others or participate in early social games l Preference for solitary play activities Communication impairments: l Impairment in language development, especially comprehension l Unusual use of language l Poor response to name l Deficient non-verbal communication (e.g., lack of pointing and difficulty following the pointing of others) l Failure to smile socially to share enjoyment and respond to the smiling of others l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond three years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics Impairment of interests, activities and other behaviours: l Over-liking for sameness and/or inability to cope with changes especially in unstructured setting l Repetitive play with toys (e.g., lining up objects or turning light switches on and off, regardless of scolding) l Over-attentiveness to small visual details (e.g., fascination with spinning wheels) l Repetitive motor mannerisms l Lack of flexible, cooperative imaginative play or creativity (although certain imaginary scenarios, such as those copied from videos or cartoons may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) Other factors which may support a diagnosis of ASD: Over- or under-sensitivity to: l Sound (e.g., has trouble keeping on task with background noise, responds negatively to unexpected/loud noises) l Touch (e.g., discomfort during grooming, avoids getting messy, picky eater, especially regarding certain textures) l Movement (e.g., becomes anxious or distressed when feet leave the ground, or twirls/spins/rocks self frequently during the day) l Visual stimuli (e.g., prefers to be in the dark, feels discomfort or avoids bright lights) l Smells (e.g., seeks out certain smells) Note: These factors in isolation are not indicative of ASD. They are intended to alert professionals to think about the possibility of ASD—whether and when they make a referral will depend on the overall situation. 1. Communication impairments l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond 3 years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics 2. Social impairments: l Inability to join in with the play of other children, or inappropriate attempts at joint play (may manifest as aggressive or disruptive behaviour) l Lack of awareness of classroom 'norms' (criticising teachers; overt unwillingness to cooperate in classroom activities; inability to appreciate/follow current trends, e.g., with regard to other children's dress, style of speech, interests, etc.) l Easily overwhelmed by social and other stimulation l Failure to relate normally to adults (too intense/no relationship) l Showing extreme reactions to invasion of personal space and extreme resistance to being 'hurried' 3. Impairment of interests, activities and behaviours: l Lack of flexible, cooperative imaginative play/creativity (although certain imaginary scenarios, e.g., copied from videos or cartoons, may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) l Inability to cope with change or unstructured situations, even ones that other children enjoy (such as school trips, teachers being away, etc.) l Preoccupation with restricted patterns of interest that are abnormal either in intensity or focus; over-attention to parts of objects 4. Other factors which may support a diagnosis of ASD: l Unusual profile of skills/deficits (e.g., social and motor skills very poorly developed, whilst general knowledge, reading or vocabulary skills are well above chronological/mental age) l Any other evidence of odd behaviours, including over- or under-sensitivity to sound (e.g., has trouble functioning when there is noise around), touch (e.g., difficulties standing in line or close to others, avoids getting messy, or excessively touches people and objects), movement (e.g., avoids playground equipment or moving toys, or seeks all kind of movement, and this interferes with daily routines), visual stimuli (e.g., prefers to be in the dark, discomfort or avoids bright lights) or smells (e.g., deliberately smells objects) l Unusual responses to movement (e.g., toe walking and hand flapping) l Unusual responses to pain l Any significant history of loss of skills Recommendations Grade The initial assessment of children may be undertaken by an individual practitioner. If there are ongoing concerns, a multidisciplinary assessment is recommended. B Preferably, a multidisciplinary team of health care practitioners experienced in ASD should undertake diagnostic assessment of young people and adults suspected of having ASD. In the absence of an assessment team, a health care practitioner trained and highly experienced in ASD may undertake diagnostic assessment. B Formal pathways for diagnostic assessment of young people and adults should be developed. C Diagnostic assessment of young people and adults should be comprehensive (covering all areas listed below), and involve the person concerned in interview and observation. C Standardised autism, Asperger syndrome and ASD assessment interviews and schedules should be used. B Test users should ensure that they are aware of the validity, reliability and appropriateness of tests when assessing people with ASD and take these limitations into account when forming opinions and reporting results. C The assessment of intellectual, adaptive and cognitive skills associated with autism, Asperger syndrome and ASD should be seriously considered and, where possible and appropriate, formally assessed. B Good Practice Points Children identified with a significant developmental concern in the 0–7 year age group should be seen by a developmental or general paediatrician. GPP A developmental services coordinator should be appointed in each local area. This person would manage the referral process for all children about whom there are developmental concerns. GPP All children suspected of having ASD or another developmental problem should have an audiology assessment. GPP If the general developmental assessment suggests an autism spectrum disorder, the developmental services coordinator should arrange a multidisciplinary assessment of the child. GPP Where the local Specialist Assessment Team has found difficulty in making a diagnosis because of atypical or complex presentation, a network of tertiary centres should be provided where children could have a tertiary-level assessment. GPP The psychometric properties of formal ASD assessment tools within the New Zealand population should be further researched. GPP Recommendations Grade Differential diagnosis must be covered during diagnostic assessment. C Differential diagnosis must be thorough and cover all conditions commonly confused with ASD and those known to coexist with ASD. C Health care professionals must have a good understanding of the different forms of expression of ASD symptomatology across developmental stages and the symptomatology of common coexisting and alternative conditions. B Good Practice Points Health care professionals must consult with specialists in areas of diagnostic overlap when issues are not clear. GPP Diagnosis of ASD in itself may be sufficient. Attempts to delineate ASD from Asperger syndrome may not be valid and are not necessary. GPP Recommendations Grade Formulation is the necessary next step from assessment. C Clarity of diagnosis should be the goal of assessment and formulation. C In situations when diagnostic clarity is not possible, an action plan should be developed to attend to areas of complexity and confusion. C All diagnostic assessments should include a detailed written report covering the person's strengths and weaknesses, developmental course, ASD symptoms, recommendations for intervention and information on support networks. C Disclosure of diagnosis of older teens and adults and decisions about the involvement of family and whānau or support people should take into consideration the wishes of the person concerned, privacy issues and their support needs. C Information on ASD and support services should be available at all diagnostic disclosure interviews and through health and disability services. B Sources of post-diagnosis support should be identified for the person with ASD. C Good Practice Points Disclosure of diagnosis of young teens should be family-centred and involve the family and whānau. GPP The need for formal support pathways of post-diagnostic support for newly diagnosed people with ASD should be investigated further. GPP Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Clinical Algorithm(s) Clinical algorithms are provided in the original guideline document for: l Identification and assessment process for children (aged <16 years) who may have autism spectrum disorder (ASD) l Identification and assessment process for young people and adults who may have ASD Evidence Supporting the Recommendations Type of Evidence Supporting the Recommendations The type of supporting evidence is identified and graded for each recommendation (see the "Major Recommendations" field). Benefits/Harms of Implementing the Guideline Recommendations Potential Benefits Implementation of this guideline will help primary care practitioners, education professionals, policy makers, funders, parents, carers, specialists and any others who make provision for individuals with autism spectrum disorder (ASD) to better understand people with ASD and their families, to improve services to people with ASD and their families and to help people better understand the information and theories around ASD and its management. ASD advocacy agencies, professionals and published accounts by people with ASD suggest that the assessment and diagnosis of young people and adults with ASD is important because it: l Prevents or rectifies misdiagnosis l Assists in the identification of appropriate educational options and placements l Assists in vocational choice, and identifies support which may facilitate vocational success l Provides access to appropriate resources, support and assistance l Enables appropriate environmental support l Facilitates contact with other people with ASD l Assists in the identification of support needs of families and whānau l Helps people with ASD to understand themselves l Helps people with ASD to understand other people l Helps other people to understand the person with ASD, including families, partners and employers l Prevents future problems l Minimises isolation by providing access to the ASD community l May lead to the identification of the broader phenotype of ASD in family members Good post-diagnosis support helps the person to: l Understand ASD and how it affects his/her life l Access good-quality ASD information l Discover his or her financial entitlements (if any) l Identify services for specific ASD support l Network with other people with ASD l Source further counselling from appropriately skilled practitioners Potential Harms Not stated Qualifying Statements Qualifying Statements Disclaimer Evidence-based practice guidelines are produced to assist health professionals, educators and consumers make decisions about education and optimum care in specific clinical circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve care. The advice in this guideline is based on epidemiological studies and other research evidence. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process. The recommendations in this guideline do not indicate an exclusive course of treatment or serve as an absolute standard of care or education. While guidelines represent a statement of best practice based on the latest available evidence (at the time of development), they are not intended to replace the professional's judgment in each individual case. Caveat As a result of feedback received during consultation, an additional independent review of applied behaviour analysis (ABA) is currently being undertaken. The purpose of the review is to critically appraise published research about ABA interventions in relation to outcomes for people with autism spectrum disorder (ASD). The current sections of the New Zealand ASD Guideline which relate to ABA will be neither reviewed nor amended until the independent review is completed. The recommendations and evidence from the review will be considered by the ASD Living Guideline Working Group using publicly available criteria that will be applied to all proposed changes to the Living Guideline (see page 16 in the original guideline document for an explanation of the Living Guideline). Interpreting Grades of Evidence In interpreting the grades attached to each recommendation, it is important to note: The strength of evidence grading does not reflect the importance of the recommendation or its direction. Implementation of the Guideline Description of Implementation Strategy Implementation Improvement in outcomes for individuals with autism spectrum disorder (ASD) will only occur with the implementation of the evidence-based recommendations in this guideline. Support and incentives will also need to be built into the implementation strategy. Barriers to implementation, identified in the impact analysis, will provide input for the design of strategies for successful implementation. Impact Analysis An impact analysis has been funded by the Ministries of Health and Education. The primary purpose is to assess the likely impact of implementing the key recommendations in the guideline, which in turn will assist government decisions regarding its implementation. To achieve this, the impact analysis used objective and prospective analysis, identified and prioritised the recommendations at a thematic level, and acknowledged the challenges for consideration in planning implementation. More specifically, the impact analysis involved the following: l A survey of current service provision, supplemented with interviews and focus group meetings l Identification of gaps in services and changes that would be required for implementation l An outline of legislation and policy implications l A thematic analysis of actions required to implement key recommendations The findings of the impact analysis contribute to the plan for implementing the New Zealand ASD Guideline. Implementation Tools Clinical Algorithm Foreign Language Translations Quick Reference Guides/Physician Guides For information about availability, see the Availability of Companion Documents and Patient Resources fields below. Institute of Medicine (IOM) National Healthcare Quality Report Categories IOM Care Need Living with Illness Staying Healthy IOM Domain Effectiveness Patient-centeredness Identifying Information and Availability Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Adaptation The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . Date Released 2008 Mar Guideline Developer(s) New Zealand Ministry of Education - National Government Agency [Non-U.S.] New Zealand Ministry of Health - National Government Agency [Non-U.S.] Source(s) of Funding New Zealand Ministry of Health and New Zealand Ministry of Education Guideline Committee Guideline Development Team Composition of Group That Authored the Guideline Team Members: Angelika Anderson, Former Researcher – Research Centre for Interventions in Teaching and Learning; Kevin Appleton, Child, Adolescent and Adult Psychiatrist, Auckland; Giles Bates, Paediatrician, Midcentral District Health Board, Palmerston North; Tanya Breen (leader of Workstream 3), Consultant Clinical Psychologist, Hamilton; Veronica Casey, Former CEO, Paediatric Society of New Zealand, Dunedin; Matt Eggleston, Child and Adolescent Psychiatrist, New Zealand Branch, Faculty Child & Adolescent Psychiatry, Royal Australia and New Zealand College of Psychiatrists Representative, Christchurch; Monique Faleafa (expert in Pacific peoples' issues), Clinical psychologist/Pacific advisor, Auckland; Jill Ford, Service Manager and occupational therapist, Ministry of Education, Special Education, Blenheim; Andrea Hasselbusch, Occupational therapist, Ministry of Education, Auckland; Lynne Hayes, Speech-language therapist, Ministry of Education and Capital and Coast District Health Board, Wellington; Anne Lethaby, Technical Editor, Independent evidence-based consultant, Santiago, Chile; Dannette Marie (expert in Māori issues), Adjunct Lecturer, Department of Psychology, University of Otago, Dunedin; Rosemary Marks (leader of Workstream 1), Developmental Paediatrician, Auckland District Health Board, Auckland; Andrew Marshall, Developmental Paediatrician, Capital and Coast District Health Board, Wellington; Keryn Mells, Primary teacher and parent member of the Autism Spectrum Disorder Intersectoral Advisory Group, Wellington; Tracey Moore, Project Manager, ASD Guideline, Ministry of Health, Dunedin; David Newman, Developmental Paediatrician, Waikato District Health Board, Hamilton; Sue Robertson (leader of Workstream 3), Project manager for Autism Solutions Ltd and parent for a person with ASD, Auckland; Adrienne Tomkins, Speech-language therapist, ex Special School Principal, Verifier, Eligibility Unit, Ministry of Education, Wellington; Marilyn Watson (leader of Workstream 2), Registered psychologist, Senior Advisor – Autism Spectrum Disorders, Ministry of Education, Special Education, Dunedin Financial Disclosures/Conflicts of Interest Contributors to the Autistic Spectrum Disorder (ASD) Guideline were asked to declare any competing interests. There were no competing interests declared by any contributors to the ASD Guideline. Guideline Status This is the current release of the guideline. Guideline Availability Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Availability of Companion Documents The following is available: l New Zealand autism spectrum disorder. Guideline summary. Wellington (New Zealand): Ministry of Health; 2008. 23 p. Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health (NZMoH) Web site . A Māori version is also available from the NZMoH Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Patient Resources None available NGC Status This NGC summary was completed by ECRI Institute on March 22, 2010. The information was verified by the guideline developer on July 20, 2010. Copyright Statement This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Disclaimer NGC Disclaimer The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site. All guidelines summarized by NGC and hosted on our site are produced under the auspices of medical specialty societies, relevant professional associations, public or private organizations, other government agencies, health care organizations or plans, and similar entities. Guidelines represented on the NGC Web site are submitted by guideline developers, and are screened solely to determine that they meet the NGC Inclusion Criteria which may be found at http://www.guideline.gov/about/inclusioncriteria.aspx. 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Guideline Summary NGC-7212 NGC banner Guideline Title Diagnosis and initial assessment of ASD. In: New Zealand autism spectrum disorder guideline. Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Guideline Status This is the current release of the guideline. Scope Disease/Condition(s) Autism spectrum disorder (ASD), including the following subgroups within the spectrum of autism*: l Pervasive developmental disorders (PDD) (as defined in the tenth edition of the International Classification of Diseases [ICD-10] and in the fourth edition of the American Diagnostic and Statistical Manual [DSM-IV]) l Classical autism l Asperger syndrome l PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified in the DSM-IV) *Note: See Appendix 4 of the original guideline document for complete ICD-10 and DSM-IV definitions and diagnostic criteria. Guideline Category Diagnosis Evaluation Clinical Specialty Family Practice Neurology Pediatrics Psychiatry Psychology Speech-Language Pathology Intended Users Advanced Practice Nurses Allied Health Personnel Health Care Providers Nurses Occupational Therapists Patients Physical Therapists Physician Assistants Physicians Psychologists/Non-physician Behavioral Health Clinicians Social Workers Speech-Language Pathologists Utilization Management Guideline Objective(s) l To provide guidance on autism spectrum disorder (ASD) in both children and adults in New Zealand l To provide the best evidence currently available to assist informed decision-making to improve the health, educational and social outcomes for individuals with ASD l To provide recommendations on the principles of identification, diagnosis and initial assessment of individuals with ASD Target Population Children and adults with autism spectrum disorder living in New Zealand Interventions and Practices Considered Diagnosis/Evaluation 1. Early identification, assessment and diagnosis of autism spectrum disorder (ASD) in young children (ages 1 to 3 years and ages 4 to 8 years), older children and adolescents (ages >8 years) 2. Assessment of key signs, developmental, intellectual, adaptive and cognitive skills for early identification of ASD 3. Standardised autism, Asperger syndrome, and ASD assessment interviews and schedules 4. Multidisciplinary assessment 5. Identification of developmental concerns and appropriate referral 6. Early identification, assessment, and diagnosis of ASD in adults 7. Differential diagnosis of autism and consideration of other possible conditions 8. Formulation and disclosure of diagnosis 9. Identification of sources of post-diagnosis support A formal whole population screening program was considered but not recommended. Major Outcomes Considered Not stated Methodology Methods Used to Collect/Select the Evidence Searches of Electronic Databases Description of Methods Used to Collect/Select the Evidence The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . This is the full version on which this part of the guideline is based and to which the reader should refer for the evidence base and rationale for recommendations. Date Range for Inclusion of Studies For all workstreams, systematic searching was performed until 2004. Papers published after the completion of searching and, in some cases before the search dates, were suggested by members of all workstreams and incorporated in the text and evidence tables, where appropriate. In future updates of the guideline, systematic searching will commence in 2004 to ensure a systematic evaluation of all the literature is achieved. Number of Source Documents Not stated Methods Used to Assess the Quality and Strength of the Evidence Weighting According to a Rating Scheme (Scheme Given) Rating Scheme for the Strength of the Evidence The New Zealand Guidelines Group (NZGG) grading system (information on this system can be found at www.nzgg.org.nz ) is a two-tier system with the following steps: 1. Critical appraisal of individual studies Each relevant study was critically appraised using a checklist and was assigned an overall level of evidence, indicating whether the study had met most or all of the criteria in the checklist (+), some of the criteria (~) or very few or none of the criteria (-). 2. Weighing the body of evidence and development of graded recommendations For each clinical question, the relevant body of evidence summarised in evidence tables was considered. Decisions were made on the quality (level of evidence), quantity, consistency, applicability and clinical impact of all the studies forming the body of evidence that were relevant to each question. See the "Rating Scheme for the Strength of the Recommendations" field for definitions. Methods Used to Analyze the Evidence Systematic Review Systematic Review with Evidence Tables Description of the Methods Used to Analyze the Evidence The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the National Autism Plan for Children (NAPC) Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Evidence grades applied by the NAPC guideline were analysed and converted to New Zealand Guidelines Group (NZGG) grades, where possible. No evidence tables were provided for the assessment and diagnosis of children as this section of the guideline was an adaptation of the NAPC UK Guideline. Methods Used to Formulate the Recommendations Expert Consensus Description of Methods Used to Formulate the Recommendations The development of the autism spectrum disorder (ASD) Guideline was initially based on a phased approach where the work was discretely divided amongst three separate workstreams into age bands. This framework was later set aside in 2004 in favour of a more flexible, collaborative, 'whole of life' way of working across all workstreams. In March 2004 a Technical Advisory Group was developed. This group consisted of up to two representatives from each of the three workstreams and the project manager. At specific times during the development of the guideline, expert advisors were also co-opted on to the group, including a New Zealand Guidelines Group (NZGG) representative and technical editors. Consultation The detailed development of the guideline was undertaken by small working groups within each workstream. The workstreams also established advisory development groups to assist in the development and provide wider consultation. Methodology Each workstream used a separate methodology for the development of the guideline. Workstream 1 Workstream 1 was led by the Paediatric Society of New Zealand under contract to the Ministry of Health. The section on diagnosis and assessment of young children in Part 1 of the original guideline document is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism. Further reference was made to the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment developed by the California Department of Developmental Services, 2002. The New Zealand Guideline Development Group in Workstream 1 applied the Appraisal of Guidelines Research and Evaluation (AGREE) tool to assess the NAPC Guideline. It was assessed as being an appropriate document to be adapted for the New Zealand environment. Some areas identified by the AGREE assessment required adaptation to reflect the New Zealand context. Adaptation of the NAPC Guideline was undertaken during face-to-face meetings, audio conferencing and email consultation of drafts. Workstream 3 This workstream, set up by the Ministry of Health and the Disability Services Directorate, was made up of two workstream leaders and a virtual team of ASD subject matter experts from across New Zealand. The writers contributed separate sections, reflecting the different expertise of the team members. The workstream leaders were responsible for half of Part 1 of the original guideline document, the assessment and diagnosis of young people and adults. Rating Scheme for the Strength of the Recommendations Grades of Recommendations Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Cost Analysis A formal cost analysis was not performed and published cost analyses were not reviewed. Method of Guideline Validation External Peer Review Internal Peer Review Description of Method of Guideline Validation To finalise the draft New Zealand Autism Spectrum Disorder (ASD) Guideline, a four-month written consultation process was undertaken from December 2006 to March 2007. Feedback was sought from across the health, education, disability and social service sectors. The consultation process involved a mail-out on request of the draft ASD Guideline and a submission booklet. These documents were also available on the Ministry of Health website, with links from the Ministry of Education website. At the same time, an expert peer review process was undertaken with nine international experts in ASD. The suggestions and references from both processes were analysed to determine whether they provided additional evidence to inform the recommendations of the guideline. Where appropriate, modifications and amendments were made to the draft ASD Guideline. Recommendations Major Recommendations Grades of recommendation (A–C, I) and good practice points (GPP) are defined at the end of the "Major Recommendations" field. Diagnosis and Initial Assessment of Autism Spectrum Disorder (ASD) Identification and Diagnosis Formal criteria for the identification and diagnosis of people with autism spectrum disorder (ASD) are provided in Appendix 4 in the original guideline document. Summary of Recommendations Table. Key Signs for Identification of Children 1–3 Years with ASD [C] Table. Key Signs in Children Aged 4–8 Years with ASD (modified from the NAPC Guideline) [C] Assessment Summary of Recommendations Differential Diagnosis of Autism and Consideration of Other Possible Conditions Summary of Recommendations Formulation, Disclosure of Diagnosis and Post-diagnosis Support Summary of Recommendations Definitions: Grades of Recommendation Recommendations Grade Early identification of children with autism spectrum disorder is essential. Early identification enables early intervention and is likely to lead to better function in later life. B A formal whole population screening programme for the identification of ASD is not recommended. B Health and education professionals should take regular opportunities (at least at 8–12 months, 2–3 years and 4–5 years) to discuss the child's development with parents as part of 'surveillance' to detect and respond rapidly to any developmental concerns. C Age of detection/diagnosis of all developmental problems, including ASD as a specified disorder, should be audited. C Parental inquiries regarding developmental concerns about their child must be taken seriously and addressed appropriately. B Good Practice Points At each health or educational professional encounter, concerns should be elicited regarding child development. GPP All health and education professionals involved in care of children should know referral pathways for those children about whom concerns are raised. GPP All children with ANY of the following findings MUST be referred for a general developmental assessment: l No babble, pointing to or showing of objects or other gesture by 12 months l No meaningful single words by 18 months l No two-word spontaneous (non-echoed or imitated) phrases by 24 months l ANY loss of any language or social skills at ANY age Key signs in children aged 1–3 years (which should prompt referral for a developmental assessment [modified from the United Kingdom National Autism Plan for Children (NAPC) Guideline]: Social impairments: l Lack of social smile and lack of eye contact l Lack of imitation of actions (e.g., clapping) l Deficits in joint attention, such as lack of showing to share interest or involving others in joint play with toys or other objects l Lack of interest in other children or odd approaches to other children l Minimal recognition or responsiveness to another's happiness or distress l Not wanting to be picked up and cuddled l Odd relationships with adults (either too friendly or distant) l Limited variety of imaginative play l Lack of pretend play, especially involving social imagination (i.e., not joining with others in shared imaginary games) l Appearing to be 'in his/her own world' l Failure to initiate simple play with others or participate in early social games l Preference for solitary play activities Communication impairments: l Impairment in language development, especially comprehension l Unusual use of language l Poor response to name l Deficient non-verbal communication (e.g., lack of pointing and difficulty following the pointing of others) l Failure to smile socially to share enjoyment and respond to the smiling of others l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond three years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics Impairment of interests, activities and other behaviours: l Over-liking for sameness and/or inability to cope with changes especially in unstructured setting l Repetitive play with toys (e.g., lining up objects or turning light switches on and off, regardless of scolding) l Over-attentiveness to small visual details (e.g., fascination with spinning wheels) l Repetitive motor mannerisms l Lack of flexible, cooperative imaginative play or creativity (although certain imaginary scenarios, such as those copied from videos or cartoons may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) Other factors which may support a diagnosis of ASD: Over- or under-sensitivity to: l Sound (e.g., has trouble keeping on task with background noise, responds negatively to unexpected/loud noises) l Touch (e.g., discomfort during grooming, avoids getting messy, picky eater, especially regarding certain textures) l Movement (e.g., becomes anxious or distressed when feet leave the ground, or twirls/spins/rocks self frequently during the day) l Visual stimuli (e.g., prefers to be in the dark, feels discomfort or avoids bright lights) l Smells (e.g., seeks out certain smells) Note: These factors in isolation are not indicative of ASD. They are intended to alert professionals to think about the possibility of ASD—whether and when they make a referral will depend on the overall situation. 1. Communication impairments l Abnormalities in language development, including muteness, odd or inappropriate intonation patterns, persistent echolalia, reference to self as 'you' or 'she/he' beyond 3 years, unusual vocabulary for child's age/social group l Limited use of language for communication and/or tendency to talk freely only about specific topics 2. Social impairments: l Inability to join in with the play of other children, or inappropriate attempts at joint play (may manifest as aggressive or disruptive behaviour) l Lack of awareness of classroom 'norms' (criticising teachers; overt unwillingness to cooperate in classroom activities; inability to appreciate/follow current trends, e.g., with regard to other children's dress, style of speech, interests, etc.) l Easily overwhelmed by social and other stimulation l Failure to relate normally to adults (too intense/no relationship) l Showing extreme reactions to invasion of personal space and extreme resistance to being 'hurried' 3. Impairment of interests, activities and behaviours: l Lack of flexible, cooperative imaginative play/creativity (although certain imaginary scenarios, e.g., copied from videos or cartoons, may be frequently re-enacted alone) l Difficulty in organising self in relation to unstructured space (e.g., hugging the perimeter of playgrounds, halls) l Inability to cope with change or unstructured situations, even ones that other children enjoy (such as school trips, teachers being away, etc.) l Preoccupation with restricted patterns of interest that are abnormal either in intensity or focus; over-attention to parts of objects 4. Other factors which may support a diagnosis of ASD: l Unusual profile of skills/deficits (e.g., social and motor skills very poorly developed, whilst general knowledge, reading or vocabulary skills are well above chronological/mental age) l Any other evidence of odd behaviours, including over- or under-sensitivity to sound (e.g., has trouble functioning when there is noise around), touch (e.g., difficulties standing in line or close to others, avoids getting messy, or excessively touches people and objects), movement (e.g., avoids playground equipment or moving toys, or seeks all kind of movement, and this interferes with daily routines), visual stimuli (e.g., prefers to be in the dark, discomfort or avoids bright lights) or smells (e.g., deliberately smells objects) l Unusual responses to movement (e.g., toe walking and hand flapping) l Unusual responses to pain l Any significant history of loss of skills Recommendations Grade The initial assessment of children may be undertaken by an individual practitioner. If there are ongoing concerns, a multidisciplinary assessment is recommended. B Preferably, a multidisciplinary team of health care practitioners experienced in ASD should undertake diagnostic assessment of young people and adults suspected of having ASD. In the absence of an assessment team, a health care practitioner trained and highly experienced in ASD may undertake diagnostic assessment. B Formal pathways for diagnostic assessment of young people and adults should be developed. C Diagnostic assessment of young people and adults should be comprehensive (covering all areas listed below), and involve the person concerned in interview and observation. C Standardised autism, Asperger syndrome and ASD assessment interviews and schedules should be used. B Test users should ensure that they are aware of the validity, reliability and appropriateness of tests when assessing people with ASD and take these limitations into account when forming opinions and reporting results. C The assessment of intellectual, adaptive and cognitive skills associated with autism, Asperger syndrome and ASD should be seriously considered and, where possible and appropriate, formally assessed. B Good Practice Points Children identified with a significant developmental concern in the 0–7 year age group should be seen by a developmental or general paediatrician. GPP A developmental services coordinator should be appointed in each local area. This person would manage the referral process for all children about whom there are developmental concerns. GPP All children suspected of having ASD or another developmental problem should have an audiology assessment. GPP If the general developmental assessment suggests an autism spectrum disorder, the developmental services coordinator should arrange a multidisciplinary assessment of the child. GPP Where the local Specialist Assessment Team has found difficulty in making a diagnosis because of atypical or complex presentation, a network of tertiary centres should be provided where children could have a tertiary-level assessment. GPP The psychometric properties of formal ASD assessment tools within the New Zealand population should be further researched. GPP Recommendations Grade Differential diagnosis must be covered during diagnostic assessment. C Differential diagnosis must be thorough and cover all conditions commonly confused with ASD and those known to coexist with ASD. C Health care professionals must have a good understanding of the different forms of expression of ASD symptomatology across developmental stages and the symptomatology of common coexisting and alternative conditions. B Good Practice Points Health care professionals must consult with specialists in areas of diagnostic overlap when issues are not clear. GPP Diagnosis of ASD in itself may be sufficient. Attempts to delineate ASD from Asperger syndrome may not be valid and are not necessary. GPP Recommendations Grade Formulation is the necessary next step from assessment. C Clarity of diagnosis should be the goal of assessment and formulation. C In situations when diagnostic clarity is not possible, an action plan should be developed to attend to areas of complexity and confusion. C All diagnostic assessments should include a detailed written report covering the person's strengths and weaknesses, developmental course, ASD symptoms, recommendations for intervention and information on support networks. C Disclosure of diagnosis of older teens and adults and decisions about the involvement of family and whānau or support people should take into consideration the wishes of the person concerned, privacy issues and their support needs. C Information on ASD and support services should be available at all diagnostic disclosure interviews and through health and disability services. B Sources of post-diagnosis support should be identified for the person with ASD. C Good Practice Points Disclosure of diagnosis of young teens should be family-centred and involve the family and whānau. GPP The need for formal support pathways of post-diagnostic support for newly diagnosed people with ASD should be investigated further. GPP Recommendations Grade The recommendation is supported by GOOD evidence (where there are a number of studies that are valid, applicable and clinically relevant). A The recommendation is supported by FAIR evidence (based on studies that are mostly valid, but there are some concerns about the volume, consistency, applicability and/or clinical relevance of the evidence that may cause some uncertainty, but are not likely to be overturned by other evidence). B The recommendation is supported by EXPERT OPINION only (from external opinion, published or unpublished, e.g., consensus guidelines). C No recommendation can be made. The evidence is insufficient (either lacking, of poor quality or conflicting, and the balance of benefits and harms cannot be determined). I Good Practice Point Where no evidence is available, best practice recommendations are made based on the experience of the Guideline Development Team or feedback from consultation within New Zealand. GPP Clinical Algorithm(s) Clinical algorithms are provided in the original guideline document for: l Identification and assessment process for children (aged <16 years) who may have autism spectrum disorder (ASD) l Identification and assessment process for young people and adults who may have ASD Evidence Supporting the Recommendations Type of Evidence Supporting the Recommendations The type of supporting evidence is identified and graded for each recommendation (see the "Major Recommendations" field). Benefits/Harms of Implementing the Guideline Recommendations Potential Benefits Implementation of this guideline will help primary care practitioners, education professionals, policy makers, funders, parents, carers, specialists and any others who make provision for individuals with autism spectrum disorder (ASD) to better understand people with ASD and their families, to improve services to people with ASD and their families and to help people better understand the information and theories around ASD and its management. ASD advocacy agencies, professionals and published accounts by people with ASD suggest that the assessment and diagnosis of young people and adults with ASD is important because it: l Prevents or rectifies misdiagnosis l Assists in the identification of appropriate educational options and placements l Assists in vocational choice, and identifies support which may facilitate vocational success l Provides access to appropriate resources, support and assistance l Enables appropriate environmental support l Facilitates contact with other people with ASD l Assists in the identification of support needs of families and whānau l Helps people with ASD to understand themselves l Helps people with ASD to understand other people l Helps other people to understand the person with ASD, including families, partners and employers l Prevents future problems l Minimises isolation by providing access to the ASD community l May lead to the identification of the broader phenotype of ASD in family members Good post-diagnosis support helps the person to: l Understand ASD and how it affects his/her life l Access good-quality ASD information l Discover his or her financial entitlements (if any) l Identify services for specific ASD support l Network with other people with ASD l Source further counselling from appropriately skilled practitioners Potential Harms Not stated Qualifying Statements Qualifying Statements Disclaimer Evidence-based practice guidelines are produced to assist health professionals, educators and consumers make decisions about education and optimum care in specific clinical circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve care. The advice in this guideline is based on epidemiological studies and other research evidence. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process. The recommendations in this guideline do not indicate an exclusive course of treatment or serve as an absolute standard of care or education. While guidelines represent a statement of best practice based on the latest available evidence (at the time of development), they are not intended to replace the professional's judgment in each individual case. Caveat As a result of feedback received during consultation, an additional independent review of applied behaviour analysis (ABA) is currently being undertaken. The purpose of the review is to critically appraise published research about ABA interventions in relation to outcomes for people with autism spectrum disorder (ASD). The current sections of the New Zealand ASD Guideline which relate to ABA will be neither reviewed nor amended until the independent review is completed. The recommendations and evidence from the review will be considered by the ASD Living Guideline Working Group using publicly available criteria that will be applied to all proposed changes to the Living Guideline (see page 16 in the original guideline document for an explanation of the Living Guideline). Interpreting Grades of Evidence In interpreting the grades attached to each recommendation, it is important to note: The strength of evidence grading does not reflect the importance of the recommendation or its direction. Implementation of the Guideline Description of Implementation Strategy Implementation Improvement in outcomes for individuals with autism spectrum disorder (ASD) will only occur with the implementation of the evidence-based recommendations in this guideline. Support and incentives will also need to be built into the implementation strategy. Barriers to implementation, identified in the impact analysis, will provide input for the design of strategies for successful implementation. Impact Analysis An impact analysis has been funded by the Ministries of Health and Education. The primary purpose is to assess the likely impact of implementing the key recommendations in the guideline, which in turn will assist government decisions regarding its implementation. To achieve this, the impact analysis used objective and prospective analysis, identified and prioritised the recommendations at a thematic level, and acknowledged the challenges for consideration in planning implementation. More specifically, the impact analysis involved the following: l A survey of current service provision, supplemented with interviews and focus group meetings l Identification of gaps in services and changes that would be required for implementation l An outline of legislation and policy implications l A thematic analysis of actions required to implement key recommendations The findings of the impact analysis contribute to the plan for implementing the New Zealand ASD Guideline. Implementation Tools Clinical Algorithm Foreign Language Translations Quick Reference Guides/Physician Guides For information about availability, see the Availability of Companion Documents and Patient Resources fields below. Institute of Medicine (IOM) National Healthcare Quality Report Categories IOM Care Need Living with Illness Staying Healthy IOM Domain Effectiveness Patient-centeredness Identifying Information and Availability Bibliographic Source(s) Diagnosis and initial assessment of ASD. In: Ministries of Health and Education. New Zealand autism spectrum disorder guideline. Wellington (New Zealand): Ministry of Health; 2008. p. 33-60. Adaptation The section on diagnosis and assessment of young children in Part 1 of the guideline is based on the National Autism Plan for Children 2003 (NAPC), which was developed by the United Kingdom National Autistic Society for the National Initiative for Autism: Screening and Assessment in conjunction with the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health and the All Party Parliamentary Group on Autism. The document is available from: www.nas.org.uk . Date Released 2008 Mar Guideline Developer(s) New Zealand Ministry of Education - National Government Agency [Non-U.S.] New Zealand Ministry of Health - National Government Agency [Non-U.S.] Source(s) of Funding New Zealand Ministry of Health and New Zealand Ministry of Education Guideline Committee Guideline Development Team Composition of Group That Authored the Guideline Team Members: Angelika Anderson, Former Researcher – Research Centre for Interventions in Teaching and Learning; Kevin Appleton, Child, Adolescent and Adult Psychiatrist, Auckland; Giles Bates, Paediatrician, Midcentral District Health Board, Palmerston North; Tanya Breen (leader of Workstream 3), Consultant Clinical Psychologist, Hamilton; Veronica Casey, Former CEO, Paediatric Society of New Zealand, Dunedin; Matt Eggleston, Child and Adolescent Psychiatrist, New Zealand Branch, Faculty Child & Adolescent Psychiatry, Royal Australia and New Zealand College of Psychiatrists Representative, Christchurch; Monique Faleafa (expert in Pacific peoples' issues), Clinical psychologist/Pacific advisor, Auckland; Jill Ford, Service Manager and occupational therapist, Ministry of Education, Special Education, Blenheim; Andrea Hasselbusch, Occupational therapist, Ministry of Education, Auckland; Lynne Hayes, Speech-language therapist, Ministry of Education and Capital and Coast District Health Board, Wellington; Anne Lethaby, Technical Editor, Independent evidence-based consultant, Santiago, Chile; Dannette Marie (expert in Māori issues), Adjunct Lecturer, Department of Psychology, University of Otago, Dunedin; Rosemary Marks (leader of Workstream 1), Developmental Paediatrician, Auckland District Health Board, Auckland; Andrew Marshall, Developmental Paediatrician, Capital and Coast District Health Board, Wellington; Keryn Mells, Primary teacher and parent member of the Autism Spectrum Disorder Intersectoral Advisory Group, Wellington; Tracey Moore, Project Manager, ASD Guideline, Ministry of Health, Dunedin; David Newman, Developmental Paediatrician, Waikato District Health Board, Hamilton; Sue Robertson (leader of Workstream 3), Project manager for Autism Solutions Ltd and parent for a person with ASD, Auckland; Adrienne Tomkins, Speech-language therapist, ex Special School Principal, Verifier, Eligibility Unit, Ministry of Education, Wellington; Marilyn Watson (leader of Workstream 2), Registered psychologist, Senior Advisor – Autism Spectrum Disorders, Ministry of Education, Special Education, Dunedin Financial Disclosures/Conflicts of Interest Contributors to the Autistic Spectrum Disorder (ASD) Guideline were asked to declare any competing interests. There were no competing interests declared by any contributors to the ASD Guideline. Guideline Status This is the current release of the guideline. Guideline Availability Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Availability of Companion Documents The following is available: l New Zealand autism spectrum disorder. Guideline summary. Wellington (New Zealand): Ministry of Health; 2008. 23 p. Electronic copies: Available in Portable Document Format (PDF) from the New Zealand Ministry of Health (NZMoH) Web site . A Māori version is also available from the NZMoH Web site . Print copies: Available from the New Zealand Ministry of Health, PO Box 5013, Wellington, New Zealand. Patient Resources None available NGC Status This NGC summary was completed by ECRI Institute on March 22, 2010. 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