Excerpt

This guideline has been developed to advise on the management and support of children and young people on the autism spectrum. The guideline recommendations have been developed by a multidisciplinary team of healthcare professionals, children and young people with autism, their carers and guideline methodologists after careful consideration of the best available evidence. It is intended that the guideline will be useful to clinicians and service commissioners in providing and planning high-quality care for children and young people with autism while also emphasising the importance of the experience of care for children and young people with autism and their carers.

Although the evidence base is rapidly expanding, there are a number of major gaps. The guideline makes a number of research recommendations specifically to address gaps in the evidence base. In the meantime, it is hoped that the guideline will assist clinicians, and children and young people with autism and their carers, by identifying the merits of particular treatment approaches where the evidence from research and clinical experience exists.

Contents

• GUIDELINE DEVELOPMENT GROUP MEMBERS
• ACKNOWLEDGMENTS
• 1. PREFACE
  • 1.1. NATIONAL CLINICAL GUIDELINES
  • 1.2. THE NATIONAL AUTISM GUIDELINE
• 2. INTRODUCTION
  • 2.1. HISTORY
  • 2.2. DIAGNOSING AUTISM
  • 2.3. TERMINOLOGY USED IN THE GUIDELINE
  • 2.4. CLINICAL FEATURES OF AUTISM
  • 2.5. THE PREVALENCE OF AUTISM
  • 2.6. THE CAUSES OF AUTISM
  • 2.7. COEXISTING CONDITIONS
  • 2.8. ONSET AND COURSE OF AUTISM
  • 2.9. THE IMPACT OF AUTISM
  • 2.10. SERVICES FOR PEOPLE WITH AUTISM, PREVIOUS GUIDELINES AND THE NATIONAL CONTEXT
  • 2.11. THE NEED FOR A GUIDELINE ON MANAGEMENT AND SUPPORT FOR CHILDREN AND YOUNG PEOPLE WITH AUTISM AND THEIR FAMILIES
  • 2.12. TRANSITION TO ADULT LIFE
  • 2.13. CONCEPTUAL FRAMEWORKS FOR INTERVENTION
  • 2.14. MULTIPROFESSIONAL AND MULTI-AGENCY COLLABORATION
  • 2.15. EVALUATING THE EVIDENCE OF THE EFFECTIVENESS OF INTERVENTIONS FOR CHILDREN AND YOUNG PEOPLE WITH AUTISM
  • 2.16. THE ECONOMIC COST OF AUTISM
• 3. METHODS USED TO DEVELOP THIS GUIDELINE
  • 3.1. OVERVIEW
  • 3.2. THE SCOPE
  • 3.3. THE GUIDELINE DEVELOPMENT GROUP
  • 3.4. REVIEW QUESTIONS
  • 3.5. SYSTEMATIC CLINICAL LITERATURE REVIEW
  • 3.6. HEALTH ECONOMICS METHODS
  • 3.7. FROM EVIDENCE TO RECOMMENDATIONS
  • 3.8. STAKEHOLDER CONTRIBUTIONS
  • 3.9. VALIDATION OF THE GUIDELINE
• 4. EXPERIENCE OF CARE AND THE ORGANISATION AND DELIVERY OF CARE
  • 4.1. INTRODUCTION
  • 4.2. REVIEW OF THE PRIMARY EVIDENCE
  • 5.2. EXPERT ADVISORY GROUP VALIDATION
  • 5.3. THE ORGANISATION OF SERVICES
  • 5.4. FROM EVIDENCE TO RECOMMENDATIONS
  • 5.5. RECOMMENDATIONS
• 6. INTERVENTIONS AIMED AT THE CORE FEATURES OF AUTISM
  • 6.1. INTRODUCTION
  • 6.2. PSYCHOSOCIAL INTERVENTIONS – CORE FEATURES OF AUTISM
  • 6.3. PHARMACOLOGICAL INTERVENTIONS – CORE FEATURES OF AUTISM
  • 6.4. BIOMEDICAL INTERVENTIONS – CORE FEATURES OF AUTISM
  • 6.5. FROM EVIDENCE TO RECOMMENDATIONS
  • 6.6. RECOMMENDATIONS
• 7. INTERVENTIONS AIMED AT BEHAVIOUR THAT CHALLENGES
  • 7.1. INTRODUCTION
  • 7.2. PSYCHOSOCIAL INTERVENTIONS – BEHAVIOUR THAT CHALLENGES
  • 7.3. PHARMACOLOGICAL INTERVENTIONS – BEHAVIOUR THAT CHALLENGES
  • 7.4. BIOMEDICAL INTERVENTIONS – BEHAVIOUR THAT CHALLENGES
  • 7.5. HEALTH ECONOMIC EVIDENCE – BEHAVIOUR THAT CHALLENGES
  • 7.6. FROM EVIDENCE TO RECOMMENDATIONS
  • 7.7. RECOMMENDATIONS
• 8. INTERVENTIONS AIMED AT ASSOCIATED FEATURES OF AUTISM AND COEXISTING CONDITIONS
  • 8.1. INTRODUCTION
  • 8.2. IMPAIRMENTS IN ADAPTIVE BEHAVIOUR
  • 8.3. SPEECH AND LANGUAGE PROBLEMS
  • 8.4. IQ, ACADEMIC SKILLS AND LEARNING
  • 8.5. SENSORY SENSITIVITIES
  • 8.6. MOTOR DIFFICULTIES
  • 8.7. COMMON COEXISTING MENTAL HEALTH PROBLEMS
  • 8.8. COMMON MEDICAL AND FUNCTIONAL PROBLEMS
• 9. INTERVENTIONS AIMED AT IMPROVING THE IMPACT ON THE FAMILY
  • 9.1. INTRODUCTION
  • 9.2. PSYCHOSOCIAL INTERVENTIONS AIMED AT IMPROVING THE IMPACT OF AUTISM ON THE FAMILY
  • 9.3. PHARMACOLOGICAL INTERVENTIONS AIMED AT IMPROVING THE IMPACT OF AUTISM ON THE FAMILY
  • 9.4. BIOMEDICAL INTERVENTIONS AIMED AT IMPROVING THE IMPACT OF AUTISM ON THE FAMILY
  • 9.5. CLINICAL EVIDENCE SUMMARY
  • 9.6. ECONOMIC EVIDENCE
  • 9.7. FROM EVIDENCE TO RECOMMENDATIONS
• 10. ADVERSE EVENTS ASSOCIATED WITH INTERVENTIONS
  • 10.1. INTRODUCTION
  • 10.2. HARMS ASSOCIATED WITH PSYCHOSOCIAL INTERVENTIONS
  • 10.3. HARMS ASSOCIATED WITH PHARMACOLOGICAL INTERVENTIONS
  • 10.4. HARMS ASSOCIATED WITH BIOMEDICAL INTERVENTIONS
  • 10.5. CLINICAL EVIDENCE SUMMARY
  • 10.6. FROM EVIDENCE TO RECOMMENDATIONS
• 11. SUMMARY OF RECOMMENDATIONS
  • 11.1. RECOMMENDATIONS
  • 11.2. RESEARCH RECOMMENDATIONS
• 12. REFERENCES
• 13. ABBREVIATIONS
• APPENDICES
  • APPENDIX 1. SCOPE FOR THE DEVELOPMENT OF THE CLINICAL GUIDELINE
  • APPENDIX 2. DECLARATIONS OF INTERESTS BY GUIDELINE DEVELOPMENT GROUP MEMBERS
  • APPENDIX 3. STAKEHOLDERS AND EXPERTS WHO SUBMITTED COMMENTS IN RESPONSE TO THE CONSULTATION DRAFT OF THE GUIDELINE
  • APPENDIX 4. RESEARCHERS CONTACTED TO REQUEST INFORMATION ABOUT UNPUBLISHED OR SOON-TO-BE PUBLISHED STUDIES
  • APPENDIX 5. ANALYTIC FRAMEWORK AND REVIEW QUESTIONS
  • APPENDIX 6. REVIEW PROTOCOLS
  • APPENDIX 7. SEARCH STRATEGIES FOR THE IDENTIFICATION OF CLINICAL STUDIES
  • APPENDIX 8. QUALITY CHECKLISTS FOR CLINICAL STUDIES AND REVIEWS
  • APPENDIX 9. SEARCH STRATEGIES FOR THE IDENTIFICATION OF HEALTH ECONOMICS EVIDENCE
  • APPENDIX 10. METHODOLOGY CHECKLIST FOR ECONOMIC STUDIES
  • APPENDIX 11. RESEARCH RECOMMENDATIONS
  • APPENDIX 12A. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: EXPERIENCE OF CARE
  • APPENDIX 12B. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: INTERVENTIONS AIMED AT CORE FEATURES OF AUTISM
  • APPENDIX 12C. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: INTERVENTIONS AIMED AT BEHAVIOUR THAT CHALLENGES
  • APPENDIX 12D. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: INTERVENTIONS AIMED AT AIMED AT ASSOCIATED FEATURES OF AUTISM AND COEXISTING PROBLEMS OR DISORDERS
  • APPENDIX 12E. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: INTERVENTIONS AIMED AT IMPROVING THE IMPACT OF AUTISM ON THE FAMILY
  • APPENDIX 12F. CLINICAL EVIDENCE –STUDY CHARACTERISTICS TABLES: ADVERSE EVENTS ASSOCIATED WITH INTERVENTIONS
  • APPENDIX 13. CLINICAL EVIDENCE –FOREST PLOTS
  • APPENDIX 14. COMPLETED METHODOLOGY CHECKLISTS
  • APPENDIX 15. COMPLETED METHODOLOGY CHECKLISTS: ECONOMIC EVALUATIONS
  • APPENDIX 16. EVIDENCE TABLES OF ECONOMIC EVALUATIONS
  • APPENDIX 17. GRADE EVIDENCE PROFILES
  • APPENDIX 18. NATIONAL AUTISTIC SOCIETY REPORT
  • APPENDIX 19. LOCAL AUTHORITY DUTIES AND SERVICE USER AND CARER RIGHTS