NICE Clincal Guidance on the Organisation and Delivery of Care for Children and Young People on the Autism Spectrum

The following is an extract from "Autism spectrum disorder in under 19s: support and management" (2013). London: NICE.

Access to health and social care services

4.6.1.1 Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.

Organisation and delivery of services

4.6.1.2 The overall configuration and development of local services (including health, mental health, learning disability, education and social care services) for children and young people with autism, should be coordinated by a local autism multi-agency strategy group (for people with autism of all ages) in line with Autism in children and young people (covering identification and diagnosis) (NICE clinical guideline 128) and Autism in adults (NICE clinical guideline 142).

4.6.1.3 The assessment, management and coordination of care for children and young people with autism should be provided through local specialist community-based multidisciplinary teams ('local autism teams') which should include professionals from health, mental health, learning disability, education and social care services in line with Autism in children and young people (covering identification and diagnosis) (NICE clinical guideline 128) and Autism in adults (NICE clinical guideline 142).

4.6.1.4 Local autism teams should ensure that every child or young person diagnosed with autism has a case manager or key worker to manage and coordinate treatment, care, support and transition to adult care in line with Autism in children and young people (covering identification and diagnosis) (NICE clinical guideline 128).

4.6.1.5 Local autism teams should provide (or organise) the interventions and care recommended in this guideline for children and young people with autism who have particular needs, including: looked-after children and young people those from immigrant groups those with regression in skills those with coexisting conditions such as:

severe visual and hearing impairments
other medical problems including epilepsy or sleep and elimination problems
motor disorders including cerebral palsy
intellectual disability
severe communication impairment, including lack of spoken language, or complex language disorders
mental health problems.

4.6.1.6 Local autism teams should have a key role in the delivery and coordination of:

specialist care and interventions for children and young people with autism, including those living in specialist residential accommodation
advice, training and support for other health and social care professionals and staff (including in residential and community settings) who may be involved in the care of children and young people with autism
advice and interventions to promote functional adaptive skills including communication and daily living skills
assessing and managing behaviour that challenges
assessing and managing coexisting conditions
reassessing needs throughout childhood and adolescence, taking particular account of transition to adult services
supporting access to leisure and enjoyable activities
supporting access to and maintaining contact with educational, housing and employment services
providing support for families (including siblings) and carers, including offering short breaks and other respite care producing local protocols for:
- information sharing, communication and collaborative working among healthcare, education and social care services, including arrangements for transition to adult services
- shared care arrangements with primary care providers and ensuring that clear lines of communication between primary and secondary care are maintained.

4.6.1.7 Refer children and young people with autism to a regional or national autism service if there is a lack of:

local skills and competencies needed to provide interventions and care for a child or young person with a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem, or response to the therapeutic interventions provided by the local autism team.

Knowledge and competence of health and social care professionals

4.6.1.8 Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism, which should include:

the nature and course of autism
the nature and course of behaviour that challenges in children and young people with autism recognition of common coexisting conditions, including:
- mental health problems such as anxiety and depression
- physical health problems such as epilepsy
- sleep problems
- other neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD)
the importance of key transition points, such as changing schools or health or social care services
the child or young person's experience of autism and its impact on them
he impact of autism on the family (including siblings) or carers
the impact of the social and physical environment on the child or young person
how to assess risk (including self-harm, harm to others, self-neglect, breakdown of family or residential support, exploitation or abuse by others) and develop a risk management plan
the changing needs that arise with puberty (including the child or young person's understanding of intimate relationships and related problems that may occur, for example, misunderstanding the behaviour of others)
how to provide individualised care and support and ensure a consistent approach is used across all settings skills for communicating with a child or young person with autism.

Making adjustments to the social and physical environment and processes of care

4.6.1.9 Take into account the physical environment in which children and young people with autism are supported and cared for. Minimise any negative impact by:

providing visual supports, for example, words, pictures or symbols that are meaningful for the child or young person
making reasonable adjustments or adaptations to the amount of personal space given
considering individual sensory sensitivities to lighting, noise levels and the colour of walls and furnishings.

4.6.1.10 Make adjustments or adaptations to the processes of health or social care, for example, arranging appointments at the beginning or end of the day to minimise waiting time, or providing single rooms for children and young people who may need a general anaesthetic in hospital (for example, for dental treatment).

Information and involvement in decision-making

4.6.1.11 Provide children and young people with autism, and their families and carers, with information about autism and its management and the support available on an ongoing basis, suitable for the child or young person's needs and developmental level. This may include: contact details for local and national organisations that can provide:

support and an opportunity to meet other people, including families or carers, with experience of autism
information on courses about autism
advice on welfare benefits, rights and entitlements
information about educational and social support and leisure activities information about services and treatments available information to help prepare for the future, for example, transition to adult services.

4.6.1.12 Make arrangements to support children and young people with autism and their family and carers during times of increased need, including major life changes such as puberty, starting or changing schools, or the birth of a sibling.

4.6.1.13 Explore with children and young people with autism, and their families and carers, whether they want to be involved in shared decision-making and continue to explore these issues at regular intervals. If children and young people express interest, offer a collaborative approach to treatment and care that takes their preferences into account.

Families and carers

4.6.1.14 Offer all families (including siblings) and carers verbal and written information about their right to:

short breaks and other respite care
a formal carer's assessment of their own physical and mental health needs, and how to access these.

4.6.1.15 Offer families (including siblings) and carers an assessment of their own needs, including whether they have:

personal, social and emotional support practical support in their caring role, including short breaks and emergency plans
a plan for future care for the child or young person, including transition to adult services.

4.6.1.16 When the needs of families and carers have been identified, discuss help available locally and, taking into account their preferences, offer information, advice, training and support, especially if they:

need help with the personal, social or emotional care of the child or young person, including age-related needs such as self-care, relationships or sexuality are involved in the delivery of an intervention for the child or young person in collaboration with health and social care professionals.

Interventions for life skills

4.6.1.17 Offer children and young people with autism support in developing coping strategies and accessing community services, including developing skills to access public transport, employment and leisure facilities.

Transition to adult services

4.6.1.18 Local autism teams should ensure that young people with autism who are receiving treatment and care from child and adolescent mental health services (CAMHS) or child health services are reassessed at around 14 years to establish the need for continuing treatment into adulthood.

4.6.1.19 If continuing treatment is necessary, make arrangements for a smooth transition to adult services and give information to the young person about the treatment and services they may need.

4.6.1.20 The timing of transition may vary locally and individually but should usually be completed by the time the young personis 18 years. Variations should be agreed by both child and adult services.

4.6.1.21 As part of the preparation for the transition to adult services, health and social care professionals should carry out a comprehensive assessment of the young person with autism.

4.6.1.22 The assessment should make best use of existing documentation about personal, educational, occupational, social and communication functioning, and should include assessment of any coexisting conditions, especially depression, anxiety, ADHD, obsessive-compulsive disorder (OCD) and global delay or intellectual disability in line with Autism in adults (NICE clinical guideline 142).

4.6.1.23 For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

4.6.1.24 Involve the young person in the planning and, where appropriate, their parents or carers.

4.6.1.25 Provide information about adult services to the young person, and their parents or carers, including their right to a social care assessment at age 18.

4.6.1.26 During transition to adult services, consider a formal meeting involving health and social care and other relevant professionals from child and adult