Excerpt

This guideline covers the recognition, referral and diagnosis of autism in children and young people from birth up to 19 years.

The term ‘autism’ describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours. Autism spectrum disorders are diagnosed in children, young people and adults if these behaviours meet the criteria defined in the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders DSM-IV Fourth Edition (Text Revision) (DSM IV-TR) and have a significant impact on function. The over-arching category term used in ICD-10 and DSM-IV-TR is pervasive developmental disorder (PDD), a term now used synonymously with autism spectrum disorder (excluding Rett syndrome): it is a behaviourally defined group of disorders, which is heterogeneous in both cause and manifestation.

The guideline development group recognised that individuals and groups prefer a variety of terms, including autism spectrum disorder, autistic spectrum condition, autistic spectrum difference and neuro-diversity. For clarity and consistency, in this guideline the term ‘autism’ is used throughout in keeping with the use of ‘autism’ in recent Department of Health, National Audit Office and Public Accounts Committee documents. However, in this guideline ‘autism’ refers to ‘autism spectrum disorder’.

Contents

• Guideline development group membership and acknowledgements
• 1. Summary of recommendations and care pathway
  • 1.1. Introduction
  • 1.2. Key priorities for implementation
  • 1.3. Recommendations
  • 1.4. Key research recommendations
  • 1.5. Care pathway
• 2. Development of the guideline
  • 2.1. Introduction
  • 2.2. Aim and scope of the guideline
  • 2.3. For whom is this guideline intended?
  • 2.4. Other relevant documents
  • 2.5. Who has developed the guideline
  • 2.6. Guideline development methodology
  • 2.7. Specific considerations for this guideline
  • 2.8. Schedule for updating the guidance
• 3. Recognition
  • Introduction
  • Clinical question
  • 3.1. Overview of the evidence
  • 3.2. Evidence profile
  • 3.3. Evidence statement
  • 3.4. Evidence to recommendations
  • Recommendations
  • 3.5. Research recommendations
• 4. Following referral
  • Introduction
  • Clinical questions
  • 4.1. Overview of the evidence: tools to identify an increased likelihood of autism spectrum disorders (ASD)
  • 4.2. Evidence profiles: tools to identify an increased likelihood of ASD
  • 4.3. Evidence statements: tools to identify an increased likelihood of ASD
  • 4.4. Evidence to recommendations: tools to identify an increased likelihood of autism
  • Recommendations
  • 4.5. Overview of the evidence: risk factors
  • 4.6. Evidence profiles: risk factors
  • 4.7. Evidence statements: risk factors
  • 4.8. Evidence to recommendations: risk factors
  • 4.9. Overview of the evidence: conditions with an increase risk of ASD
  • 4.10. Evidence profiles: conditions with an increased prevalence of ASD
  • 4.11. Evidence statements: conditions with an increased prevalence of ASD
  • 4.12. Evidence to recommendations: risk factors and conditions with an increased prevalence of autism
  • Recommendations
  • 4.13. Overview of the evidence: information from other sources
  • 4.14. Evidence profile: information from other sources
  • 4.15. Evidence statement: information from other sources
  • 4.16. Evidence to recommendations: information from other sources
  • Recommendations
  • 4.17. Research recommendations: information from other sources
• 5. Diagnostic assessment
  • Introduction
  • Clinical questions
  • 5.1. Overview of the evidence: accuracy of assessment tools
  • 5.2. Evidence profiles: accuracy of assessment tools
  • 5.3. Evidence statement: accuracy of assessment tools
  • 5.4. Evidence to recommendations: accuracy of assessment tools
  • 5.5. Overview of the evidence: agreement between assessment tools
  • 5.6. Evidence profiles: agreement between assessment tools
  • 5.7. Evidence statement: agreement between assessment tools
  • 5.8. Evidence to recommendations: agreement between assessment tools
  • 5.9. Overview of the evidence: other assessment tools to assist interpretation of the autism-specific diagnostic tools
  • 5.10. Evidence profiles: other assessment tools to assist interpretation of the autism-specific diagnostic tools
  • 5.11. Evidence statement: other assessment tools to assist interpretation of the autism-specific diagnostic tools
  • 5.12. Evidence to recommendations: other assessment tools to assist interpretation of the autism-specific diagnostic tools
  • 5.13. Overview of evidence: agreement between a single clinician and a panel of clinicians when making a diagnosis
  • 5.14. Evidence profile: agreement between a single clinician and a panel of clinicians when making a diagnosis
  • 5.15. Evidence statement: agreement between a single clinician and a panel of clinicians when making a diagnosis
  • 5.16. Evidence to recommendations: agreement between a single clinician and a panel of clinicians when making a diagnosis
  • 5.17. Overview of the evidence: stability of ICD-10 and DSM-IV-TR criteria
  • 5.18. Evidence profiles: stability of ICD-10 and DSM-IV-TR criteria
  • 5.19. Evidence statement: stability of ICD-10 and DSM-IV-TR criteria
  • 5.20. Evidence to recommendations for sections 5.1–5.19
  • Recommendations
  • 5.21. Research recommendations
  • 5.22. Overview of the evidence: communicating diagnosis to the family
  • 5.23. Evidence profile: communicating diagnosis to the family
  • 5.24. Evidence statements: communicating diagnosis to the family
  • 5.25. Evidence to recommendations: communicating diagnosis to the family
  • Recommendations
  • 5.26. Overview of the evidence: actions that should follow assessment for children and young people who are not immediately diagnosed
  • 5.27. Evidence profile: actions that should follow assessment for children and young people who are not immediately diagnosed
  • 5.28. Evidence statement: actions that should follow assessment for children and young people who are not immediately diagnosed
  • 5.29. Evidence to recommendations: actions that should follow assessment for children and young people who are not immediately diagnosed
  • Recommendations
• 6. Differential diagnosis
  • Introduction
  • Clinical question
  • 6.1. Overview of the evidence: identifying differential diagnoses
  • 6.2. Evidence profile: identifying differential diagnoses
  • 6.3. Evidence statements: identifying differential diagnoses
  • 6.4. Evidence to recommendations: identifying differential diagnoses
  • 6.5. Overview of the evidence: identifying features that differentiate ASD from other conditions
  • 6.6. Evidence profiles: identifying features that differentiate ASD from other conditions
  • 6.7. Evidence statements: identifying features that differentiate ASD from other conditions
  • 6.8. Evidence to recommendations: identifying features that differentiate autism from other conditions
  • Recommendations
• 7. Assessment of coexisting conditions
  • Introduction
  • Clinical question
  • 7.1. Overview of the evidence
  • 7.2. Evidence profiles
  • 7.3. Evidence statements
  • 7.4. Evidence to recommendations
  • Recommendations
• 8. Medical investigations
  • Introduction
  • Clinical question
  • 8.1. Overview of the evidence
  • 8.2. Evidence profiles
  • 8.3. Evidence statements
  • 8.4. Evidence to recommendations
  • Recommendations
  • 8.5. Research recommendations
• 9. Information and support
  • Introduction
  • Clinical questions
  • 9.1. Overview of the evidence: information during the process of referral, assessment and diagnosis
  • 9.2. Evidence profile: information during the process of referral, assessment and diagnosis
  • 9.3. Evidence statement: information during the process of referral, assessment and diagnosis
  • 9.4. Evidence to recommendations: information during the process of referral, assessment and diagnosis
  • Recommendations
  • 9.5. Overview of the evidence: support for children, young people, their families and carers
  • 9.6. Evidence profile: support for children, young people, their families and carers
  • 9.7. Evidence statement: support for children, young people, their families and carers
  • 9.8. Evidence to recommendations: support for children, young people, their families and carers
  • Recommendations
• 10. Service descriptions and resource use
  • 10.1. Introduction
  • 10.2. Descriptions of specific autism diagnostic services
  • 10.3. Estimating resource use for an autism specific assessment
  • 10.4. Conclusion
• 11. References, abbreviations and glossary
  • 11.1. References
  • 11.2. Abbreviations
  • 11.3. Glossary
• Appendix A. Scope
• Appendix B. Declarations of interest
• Appendix C. Registered stakeholder organisations
• Appendix D. Review questions
• Appendix E. Protocols
• Appendix F. Search strategies
• Appendix G. Excluded studies
• Appendix H. Included studies
• Appendix I. Diagnostic criteria
• Appendix J. Diagnostic tools
• Appendix K. Differential diagnosis advice for healthcare professionals

While every effort has been made to ensure the accuracy of the information contained within this publication, the publisher can give no guarantee for information about drug dosage and application thereof contained in this book. In every individual case the respective user must check current indications and accuracy by consulting other pharmaceutical literature and following the guidelines laid down by the manufacturers of specific products and the relevant authorities in the country in which they are practising.

This guideline has been fully funded by NICE. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient.

Implementation of this guidance is the responsibility of local commissioners and/or providers.