Autism Recognition, referral and diagnosis

1. Autism Recognition, referral and diagnosis Implementing NICE guidance September 2011 NICE clinical guideline 128

2. What this presentation covers • Definition • Background • Epidemiology • Scope • Priorities for implementation • Costs and savings • Discussion • NICE Pathway and NHS Evidence • Find out more

3. Definition • The over-arching category term used in ICD-10 and DSM-IV is pervasive developmental disorder, a term used synonymously with autism spectrum disorder. • Different individuals prefer a variety of terms. • ‘Autism’ in this slide set and throughout the NICE guideline refers to ‘autism spectrum disorders’ and is used as an umbrella term, synonymous with all diagnosed autism spectrum disorders.

4. Background • Autism is a lifelong disorder that has a great impact on the child or young person and their family or carers. • Autism describes behavioural differences and difficulties with reciprocal social interaction and communication, combined with restricted interests and rigid and repetitive behaviours. • Core autism behaviours are typically present in early childhood, but features may not be apparent in some individuals until their circumstances change, such as going to school or transition to secondary school.

5. Epidemiology • Autism was previously thought to be an uncommon disorder, but is now thought to occur in at least 1% of children. • There is wide variation in availability of services. • Delays in diagnosis affect access to services. • Coordination between health and other services is a key element to improving care.

6. Scope • The guideline covers: • Children and young people from birth up to their 19th birthday. • Local strategy and pathway for recognition, referral and diagnosis of autism. • Signs and symptoms of possible autism. • Components of diagnostic assessment and the health professionals who should be involved with this. • Information and support needs. • This guideline does not cover management of autism.

7. Key priorities for implementation • Local pathway for recognition, referral and diagnostic assessment (slides 8–10 covering the local autism strategy group and the autism team). • Diagnostic assessment (slides 16–17). • Communicating the results from the diagnostic assessment (slide 21). Other recommendations related to the key priorities for implementation are also included within this slide set.

8. Local autism multi-agency strategy group: 1 A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector.

9. Local autism multi-agency strategy group: 2 Appoint a lead professional within the strategy group responsible for the local autism pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include: • improving early recognition through development of a pathway to diagnostic services • raising awareness of the signs and symptoms • raising professional awareness of the local autism pathway • supporting the transition to adult services • monitoring implementation of the pathway through data collection and audit.

10. Multidisciplinary autism team In each area a multidisciplinary team (the autism team) should be set up. The core membership should include a: - paediatrician and/or child and adolescent psychiatrist - speech and language therapist - clinical and/or educational psychologist And should also include or have access to a: - paediatrician or paediatric neurologist - child and adolescent psychiatrist - educational psychologist - clinical psychologist - occupational therapist - other professionals who may be able to contribute to the assessment.

11. Autism team role : 1 Autism team members should: • provide advice to healthcare professionals about whether to refer for autism diagnostic assessments • decide on assessment needs of those referred • carry out the autism diagnostic assessment • share the outcome of the assessment • share information from diagnostic assessment with relevant services (if consent given)

12. Autism team role: 2 Autism team members should: • offer information about appropriate services and support • have the skills to carry out diagnostic assessments for those with special circumstances • consider carrying out the diagnostic assessment jointly with adult services if a young person presents at the time of transition to adult services.

13. Recognising possible autism: 1 • Healthcare professionals should consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for this. • Take the child/young person’s and parent’s or carer’s concerns seriously. • Use the NICE signs and symptoms tables to help identify possible autism. • When considering the possibility of autism, ask about use and understanding of first language.

14. Recognising possible autism: 2 Be aware that: • signs and symptoms should be seen in the context of overall development, and will not always have been recognised • signs and symptoms in older children may have been masked • it is necessary to take into account cultural variation, but do not assume language delay is accounted for by hearing difficulties or because English is not the family’s first language • autism may be missed in those with an intellectual disability or those who are verbally able

15. Recognising possible autism: 3 Be aware that: • autism may be under-diagnosed in girls • important information about early development may not be readily available for some children, e.g. looked-after children and those in the criminal justice system • signs and symptoms may not be accounted for by disruptive home experiences or parental/carer mental or physical illness.

16. Referring to the autism team: 1 • The autism strategy group lead should ensure that there is a single point of access to the autism team. • If there are concerns regarding regression, healthcare or other professionals should: - refer children younger than 3 to the autism team if there is regression in language or social skills - refer first to a paediatrician or paediatric neurologist, who can refer to the autism team if necessary, children and young people: • - older than 3 years with regression in language • - of any age with regression in motor skills.

17. Referring to the autism team: 2 • Healthcare or other professionals should consider referring to the autism team if concerned about possible autism on the basis of reported or observed signs and symptoms. • When referring to the autism team, include in the referral letter: - reported information about signs and/or symptoms - your own observations of the signs and/or symptoms • Explain to parents/carers or, if appropriate, the child/young person, what will happen on referral.

18. Autism diagnostic assessment The autism team should: • Identify a case coordinator for every child or young person having a diagnostic assessment. • Include in every autism diagnostic assessment: - details about concerns - experiences of home life, education and social care - a developmental history - assessment of social and communication skills - a medical history - a physical examination - systematic assessment for conditions which may coexist - consideration of the differential diagnosis - developing a profile - communicating assessment findings.

19. Diagnostic assessment: individual profile • Consider which assessments are needed to construct a profile for each individual, for example: • intellectual ability and learning style • academic skills • speech, language and communication • fine and gross motor skills • adaptive behaviour (including self-help skills) • behaviour likely to affect day-to-day functioning and social participation • mental and emotional health • physical health and nutrition • sensory sensitivities • socialisation skills.

20. Differential diagnoses • Consider the following differential diagnoses for autism and determine whether specific assessments are needed to help interpret the autism history and observations: • Neurodevelopmental disorders • Mental and behavioural disorders • Conditions in which there is developmental regression • Other conditions: • severe hearing impairment • severe visual impairment • maltreatment • selective mutism.

21. Diagnostic assessment: coexisting conditions • Consider whether the child or young person may have any coexisting conditions, and if suspected carry out appropriate assessments and referrals.

22. Diagnostic assessment: diagnosis • If there are diagnostic discrepancies, consider gathering further information and/or carrying out further autism-specific observations. • Use information from all sources together with clinical judgement to diagnose autism. Do not rely on any autism-specific diagnostic tool alone. • Be aware that there may be uncertainty about the diagnosis of autism. Some children and young people will have features of behaviour that are seen on the autism spectrum but do not reach the diagnostic criteria.

23. After the assessment • Immediately discuss the findings sensitively and in person with the parents or carers and child/young person if appropriate. • With consent, disseminate and share the results with professionals in education and, if appropriate, social care, so it can contribute to the child or young person’s individual education plan and needs-based management plan. • For those with a diagnosis of autism, offer a follow-up appointment within 6 weeks of the end of the autism assessment.

24. Information and support • Provide individual information on support available locally for parents, carers and young people with autism. This may include contact details for: • local and national support organisations • organisations that can provide advice on welfare benefits • organisations that can provide information on educational support and social care • Support may also include information to help prepare for the future, for example transition to adult services.

25. Costs • Potential areas for additional costs locally are: • recruitment and training of new autism team members, or training for existing roles. • an increase in the overall volume of referrals to the autism team due to improved recognition • additional costs to communicate the results of autism assessments, for example school visits by autism team

26. Savings • Potential areas for savings locally are: • increased use of tools to identify children and young people with an increased likelihood of autism may decrease the number of unnecessary referrals to the autism team. • efficiency savings due to better multi-agency working.

27. Discussion • What actions do we need to take to set up an autism strategy group locally? • We may need to use the workforce as flexibly as possible; what first steps can we make? • How can we raise awareness of, and aid dissemination of, the signs and symptoms tables within primary care? • Who is responsible for looking at and amending the care pathway to incorporate these recommendations?

28. NICE Pathway • The NICE autism in children and young people Pathway covers: • recognising possible autism • referral • assessment • diagnosis Click here to go to NICE Pathways website

29. NHS Evidence To be added- the latest NHS evidence image Visit NHS Evidence for the best available evidence on all aspects of autism Click here to go to the NHS Evidence website

30. Find out more • Visit www.nice.org.uk/CG128 for: • the guideline • the quick reference guide • ‘Understanding NICE guidance’ • costing statement • audit support • clinical case scenarios • signs and symptoms tables

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