Autism: recognition, referral, diagnosis and management of adults on the autism spectrum- webbrothersblog

NICE clinical guideline 142

guidance.nice.org.uk/cg142

NHS Evidence has accredited the process used by the Centre for Clinical Practice at NICE to

produce guidelines. Accreditation is valid for 5 years from September 2009 and applies to guidelines

produced since April 2007 using the processes described in NICE’s ‘The guidelines manual’ (2007,

updated 2009). More information on accreditation can be viewed at www.evidence.nhs.uk

Contents

Introduction …………………………………………………………………………………………………………………. 4

Person-centred care……………………………………………………………………………………………………… 6

Key priorities for implementation …………………………………………………………………………………….. 7

1 Guidance ………………………………………………………………………………………………………………….. 10

1.1 General principles of care …………………………………………………………………………………………………. 10

1.2 Identification and assessment …………………………………………………………………………………………….. 15

1.3 Identifying the correct interventions and monitoring their use ………………………………………………….. 22

1.4 Interventions for autism …………………………………………………………………………………………………….. 24

1.5 Interventions for challenging behaviour ……………………………………………………………………………….. 27

1.6 Interventions for coexisting mental disorders ………………………………………………………………………… 30

1.7 Assessment and interventions for families, partners and carers………………………………………………. 31

1.8 Organisation and delivery of care ……………………………………………………………………………………….. 32

2 Notes on the scope of the guidance ……………………………………………………………………………… 38

3 Implementation …………………………………………………………………………………………………………. 39

4 Research recommendations ……………………………………………………………………………………….. 40

4.1 Facilitated self-help for anxiety and depression in adults with autism……………………………………….. 40

4.2 Cognitive behavioural therapy (CBT) for anxiety disorders in adults with autism ……………………….. 41

4.3 Pharmacological treatments for depression in adults with autism ……………………………………………. 41

4.4 The structure and organisation of specialist teams ………………………………………………………………… 42

4.5 Augmentative communication devices for adults with autism ………………………………………………….. 43

5 Other versions of this guideline ……………………………………………………………………………………. 44

5.1 Full guideline ……………………………………………………………………………………………………………………. 44

5.2 NICE pathway ………………………………………………………………………………………………………………….. 44

5.3 Information for the public……………………………………………………………………………………………………. 44

6 Related NICE guidance………………………………………………………………………………………………. 45

Autism: recognition, referral, diagnosis and management of adults

on the autism spectrum

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guideline 142

7 Updating the guideline………………………………………………………………………………………………… 46

Appendix A: The Guideline Development Group, National Collaborating Centre and NICE

project team…………………………………………………………………………………………………………………. 47

Guideline Development Group…………………………………………………………………………………………………. 47

National Collaborating Centre for Mental Health…………………………………………………………………………. 48

NICE project team………………………………………………………………………………………………………………….. 49

Appendix B: The Guideline Review Panel………………………………………………………………………… 51

Glossary ……………………………………………………………………………………………………………………… 52

Augmentative communication …………………………………………………………………………………………………. 52

Behavioural principles ……………………………………………………………………………………………………………. 52

Care pathway ……………………………………………………………………………………………………………………….. 52

Challenging behaviour …………………………………………………………………………………………………………… 52

Chelation ……………………………………………………………………………………………………………………………… 52

Easy read …………………………………………………………………………………………………………………………….. 53

Facilitated communication ………………………………………………………………………………………………………. 53

Functional analysis ………………………………………………………………………………………………………………… 53

Hyper- and hypo-sensory sensitivities ……………………………………………………………………………………… 53

Informant ……………………………………………………………………………………………………………………………… 53

Learning disability …………………………………………………………………………………………………………………. 53

Modelling ……………………………………………………………………………………………………………………………… 54

Reinforcement ………………………………………………………………………………………………………………………. 54

About this guideline ………………………………………………………………………………………………………. 55

Autism: recognition, referral, diagnosis and management of adults

on the autism spectrum

NICE clinical

guideline 142

Introduction

Autism is a lifelong neurodevelopmental condition, the core features of which are persistent

difficulties in social interaction and communication and the presence of stereotypic (rigid and

repetitive) behaviours, resistance to change or restricted interests. The way that autism is

expressed in individual people differs at different stages of life, in response to interventions, and

with the presence of coexisting conditions such as learning disabilities (also called ‘intellectual

disabilities’). People with autism also commonly experience difficulty with cognitive and

behavioural flexibility, altered sensory sensitivity, sensory processing difficulties and emotional

regulation difficulties. The features of autism may range from mild to severe and may fluctuate

over time or in response to changes in circumstances.

A significant proportion of adults with autism across the whole autistic spectrum experience

social and economic exclusion. Their condition is often overlooked by healthcare, education and

social care professionals, which creates barriers to accessing the support and services they

need to live independently. In addition, people with autism are more likely to have coexisting

mental and physical disorders, and other developmental disorders. Some may have contact with

the criminal justice system, as either victims of crime or offenders, and it is important that their

needs are recognised.

There is wide variation in rates of identification and referral for diagnostic assessment, waiting

times for diagnosis, models of multi-professional working, assessment criteria and diagnostic

practice for adults with features of autism. These factors contribute to delays in reaching a

diagnosis and subsequent access to appropriate services.

When the diagnostic assessment process works well, professionals, the person with autism and

their family, partner or carer(s) communicate right from the start and the person with autism is

involved in the decisions relating to their care. This lays the foundation for a long-term

understanding between the person with autism, their family, partner or carer(s) and the

professionals supporting their needs. However, many adults with suspected autism have

difficulties accessing a diagnostic assessment. Even if they manage to obtain a diagnosis they

may receive no follow-up support because of the absence of appropriate services or an agreed

care pathway.

In this guideline ‘autism’ refers to ‘autism spectrum disorders’ encompassing autism, Asperger’s

syndrome and atypical autism (or pervasive developmental disorder not otherwise specified).

Autism: recognition, referral, diagnosis and management of adults

on the autism spectrum

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guideline 142

The Guideline Development Group recognises, however, that different individuals and groups

prefer a variety of terms for autism including autistic spectrum condition, autistic spectrum

difference and neurodiversity (in recent Department of Health, National Audit Office and Public

Accounts Committee documents, ‘autism’ is used to cover all of these terms).

This guideline covers the care provided by primary, community, secondary, tertiary and other

health and social care professionals who have direct contact with, and make decisions

concerning the care of, adults with autism.

A number of recommendations in this guideline have been adapted from recommendations in

other NICE clinical guidelines. Where this occurred, the Guideline Development Group was

careful to preserve the meaning and intent of the original recommendations. Changes to wording

or structure were made in order to fit the recommendations into this guideline. In all cases, the

original source of any adapted recommendations is indicated in a footnote.

The guideline will assume that prescribers will use a drug’s summary of product characteristics

(SPC) to inform decisions made with individual patients. In this guideline, drug names are

marked with a footnote if they do not have a UK marketing authorisation for the indication in

question at the time of publication. Prescribers should check each drug’s SPC for current

licensed indications.

Autism: recognition, referral, diagnosis and management of adults

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Person-centred care

This guideline offers best practice advice on the care of adults with autism.

Support and care should take into account peoples’ needs and preferences. People with autism

should have the opportunity to make informed decisions about their care, in partnership with their

healthcare professionals. If adults with autism do not have the capacity to make decisions,

healthcare professionals should follow the Department of Health’s advice on consent and the

code of practice that accompanies the Mental Capacity Act. In Wales, healthcare professionals

should follow advice on consent from the Welsh Government.

Good communication between healthcare professionals and people with autism and their

families, partners and carers is essential. It should be supported by evidence-based written

information tailored to the person’s needs. Support and care, and the information people are

given about it, should be culturally appropriate. It should also be accessible to people with

additional needs such as physical, sensory or learning disabilities, and to people who do not

speak or read English.

If the person with autism agrees, families, partners and carers should have the opportunity to be

involved in decisions about support and care.

Families, partners and carers should also be given the information and support they need.

Care of young people in transition between paediatric services/child and adolescent mental

health services (CAMHS) and adult services should be planned and managed according to the

best practice guidance described in the Department of Health’s Transition: getting it right for

young people.

Adult and paediatric healthcare/CAMHS teams should work jointly to provide assessment and

services to young people with autism. Diagnosis and management should be reviewed

throughout the transition process, and there should be clarity about who is the lead clinician to

ensure continuity of care.

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on the autism spectrum

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Key priorities for implementation

The following recommendations have been identified as priorities for implementation.

General principles of care

All staff working with adults with autism should:

work in partnership with adults with autism and, where appropriate, with their families,

partners or carers

offer support and care respectfully

take time to build a trusting, supportive, empathic and non-judgemental relationship

as an essential part of care.

In order to effectively provide care and support for adults with autism, the local autism multiagency

strategy group[1] should include representation from managers, commissioners and

clinicians from adult services, including mental health, learning disability, primary healthcare,

social care, housing, educational and employment services, the criminal justice system and

the third sector. There should be meaningful representation from people with autism and

their families, partners and carers.

Identification and assessment

Consider assessment for possible autism when a person has:

one or more of the following:

persistent difficulties in social interaction

persistent difficulties in social communication

stereotypic (rigid and repetitive) behaviours, resistance to change or restricted

interests, and

one or more of the following:

problems in obtaining or sustaining employment or education

Autism: recognition, referral, diagnosis and management of adults

on the autism spectrum

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guideline 142

difficulties in initiating or sustaining social relationships

previous or current contact with mental health or learning disability services

a history of a neurodevelopmental condition (including learning disabilities and

attention deficit hyperactivity disorder) or mental disorder.

For adults with possible autism who do not have a moderate or severe learning disability,

consider using the Autism-Spectrum Quotient – 10 items (AQ-10)[2]. (If a person has reading

difficulties, read out the AQ-10.) If a person scores above six on the AQ-10, or autism is

suspected based on clinical judgement (taking into account any past history provided by an

informant), offer a comprehensive assessment for autism.

When assessing challenging behaviour carry out a functional analysis (see recommendation

1.5.3) including identifying and evaluating any factors that may trigger or maintain the

behaviour, such as:

physical disorders

the social environment (including relationships with the family, partner, carer(s) and

friends)

the physical environment, including sensory factors

coexisting mental disorders (including depression, anxiety disorders and psychosis)

communication problems

changes to routine or personal circumstances.

Interventions for autism

For adults with autism without a learning disability or with a mild learning disability, who are

having difficulty obtaining or maintaining employment, consider an individual supported

employment programme.

Organisation and delivery of care

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Autism strategy groups should be responsible for developing, managing and evaluating local

care pathways. The group should appoint a lead professional responsible for the local

autism care pathway. The aims of the strategy group should include:

developing clear policy and protocols for the operation of the pathway

ensuring the provision of multi-agency training about signs and symptoms of autism,

and training and support on the operation of the pathway

making sure the relevant professionals (health, social care, housing, educational and

employment services and the third sector) are aware of the local autism pathway and

how to access services

supporting the integrated delivery of services across all care settings

supporting the smooth transition to adult services for young people going through the

pathway

auditing and reviewing the performance of the pathway[3].

[1] See Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum (NICE clinical guideline 128).

[2] Allison C, Auyeung B, Baron-Cohen S (2012) Towards brief ‘red flags’ for autism screening: the

short Autism Spectrum Quotient and the short Quantitative Checklist for Autism in toddlers in

1000 cases and 3000 controls. Journal of the American Academy of Child and Adolescent

Psychiatry 51: 202–12.

[3] Adapted from Common mental health disorders: identification and pathways to care (NICE

clinical guideline 123).

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guideline 142

1 Guidance

The following guidance is based on the best available evidence. The full guideline gives details

of the methods and the evidence used to develop the guidance.

1.1 General principles of care

Principles for working with adults with autism and their families, partners and carers

1.1.1 All staff working with adults with autism should:

work in partnership with adults with autism and, where appropriate, with their

families, partners and carers

offer support and care respectfully

take time to build a trusting, supportive, empathic and non-judgemental relationship

as an essential part of care.

1.1.2 All staff working with adults with autism should have an understanding of the:

nature, development and course of autism

impact on personal, social, educational and occupational functioning

impact of the social and physical environment.

1.1.3 All health and social care professionals providing care and support for adults

with autism should have a broad understanding of the:

nature, development and course of autism

impact on personal, social, educational and occupational functioning

impact of and interaction with the social and physical environment

impact on and interaction with other coexisting mental and physical disorders and

their management

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potential discrepancy between intellectual functioning as measured by IQ and

adaptive functioning as reflected, for example, by difficulties in planning and

performing activities of daily living including education or employment.

1.1.4 All health and social care professionals providing care and support for adults

with autism should:

aim to foster the person’s autonomy, promote active participation in decisions about

care and support self-management

maintain continuity of individual relationships wherever possible

ensure that comprehensive information about the nature of, and interventions and

services for, their difficulties is available in an appropriate language or format

(including various visual, verbal and aural, easy-read, and different colour and font

formats)

consider whether the person may benefit from access to a trained advocate.

1.1.5 All health and social care professionals providing care and support for adults

with autism and their families, partners and carers should:

ensure that they are easily identifiable (for example, by producing or wearing

appropriate identification) and approachable

clearly communicate their role and function

address the person using the name and title they prefer

clearly explain any clinical language and check that the person with autism

understands what is being said

take into account communication needs, including those arising from a learning

disability, sight or hearing problems or language difficulties, and provide

communication aids or independent interpreters (someone who does not have a

personal relationship with the person with autism) if required.

1.1.6 All health and social care professionals providing care and support for adults

with autism and their families, partners and carers should ensure that they are:

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familiar with recognised local and national sources (organisations and websites) of

information and/or support for people with autism

able to discuss and advise on how to access and engage with these resources.

1.1.7 Encourage adults with autism to participate in self-help or support groups or

access one-to-one support, and provide support so that they can attend

meetings and engage in the activities.

1.1.8 In all settings, take into account the physical environment in which adults with

autism are assessed, supported and cared for, including any factors that may

trigger challenging behaviour. If necessary make adjustments or adaptations to

the:

amount of personal space given (at least an arm’s length)

setting using visual supports (for example, use labels with words or symbols to

provide visual cues about expected behaviour)

colour of walls and furnishings (avoid patterns and use low-arousal colours such as

cream)

lighting (reduce fluorescent lighting, use blackout curtains or advise use of dark

glasses or increase natural light)

noise levels (reduce external sounds or advise use of earplugs or ear defenders).

Where it is not possible to adjust or adapt the environment, consider varying the

duration or nature of any assessment or intervention (including taking regular

breaks) to limit the negative impact of the environment.

1.1.9 All health and social care professionals providing care and support for adults

with autism should:

be aware of under-reporting and under-recognition of physical disorders in people

with autism

be vigilant for unusual likes and dislikes about food and/or lack of physical activity

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offer advice about the beneficial effects of a healthy diet and exercise, taking into

account any hyper- and/or hypo-sensory sensitivities; if necessary, support referral

to a GP or dietician.

1.1.10 All staff working with adults with autism should be sensitive to issues of

sexuality, including asexuality and the need to develop personal and sexual

relationships. In particular, be aware that problems in social interaction and

communication may lead to the person with autism misunderstanding another

person’s behaviour or to their possible exploitation by others.

1.1.11 Ensure that adults with autism who have caring responsibilities receive support

to access the full range of mental and physical health and social care services,

including:

specific information, advice and support to parents about their parenting role,

including parent training if needed, by professionals experienced in the care of

adults and children with autism

social support, such as childcare, to enable them to attend appointments, groups

and therapy sessions, and to access education and employment.

Structures for the organisation and delivery of care and interventions

1.1.12 In order to effectively provide care and support for adults with autism, the local

autism multi-agency strategy group[4] should include representation from

managers, commissioners and clinicians from adult services, including mental

health, learning disability, primary healthcare, social care, housing, educational

and employment services, the criminal justice system and the third sector.

There should be meaningful representation from people with autism and their

families, partners and carers.

1.1.13 In each area a specialist community-based multidisciplinary team for adults

with autism (the specialist autism team) should be established. The

membership should include:

clinical psychologists

nurses

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occupational therapists

psychiatrists

social workers

speech and language therapists

support staff (for example, staff supporting access to housing, educational and

employment services, financial advice, and personal and community safety skills).

1.1.14 The specialist autism team should have a key role in the delivery and

coordination of:

specialist diagnostic and assessment services

specialist care and interventions

advice and training to other health and social care professionals on the diagnosis,

assessment, care and interventions for adults with autism (as not all may be in the

care of a specialist team)

support in accessing, and maintaining contact with, housing, educational and

employment services

support to families, partners and carers where appropriate

care and interventions for adults with autism living in specialist residential

accommodation

training, support and consultation for staff who care for adults with autism in

residential and community settings.

Involving families, partners and carers

1.1.15 Discuss with adults with autism if and how they want their families, partners or

carers to be involved in their care. During discussions, take into account any

implications of the Mental Capacity Act (2005) and any communication needs

the person may have (see recommendation 1.1.5).

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1.1.16 If the person with autism wants their family, partner or carer(s) to be involved,

encourage this involvement and:

negotiate between the person with autism and their family, partner or carer(s) about

confidentiality and sharing of information on an ongoing basis

explain how families, partners and carers can help support the person with autism

and help with care plans

make sure that no services are withdrawn because of involvement of the family,

partner or carer(s), unless this has been clearly agreed with both the person with

autism and their family, partner or carer(s).

1.1.17 Give all families, partners and carer(s) (whether or not the person wants them

to be involved in their care) verbal and written information about:

autism and its management

local support groups and services specifically for families, partners and carers

their right to a formal carer’s assessment of their own physical and mental health

needs, and how to access this.

1.1.18 If a person with autism does not want their family, partners or carer(s) to be

involved in their care:

give the family, partner or carer(s) verbal and written information about who they

can contact if they are concerned about the person’s care

bear in mind that people with autism may be ambivalent or negative towards their

family or partner. This may be for many different reasons, including a coexisting

mental disorder or prior experience of violence or abuse.

1.2 Identification and assessment

Principles for the effective assessment of autism

1.2.1 Staff who have responsibility for the identification or assessment of adults with

autism should adapt these procedures, if necessary, to ensure their effective

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delivery, including modifications to the setting in which assessment is delivered

(see recommendation 1.1.8) and the duration and pacing of the assessment.

Identification and initial assessment of possible autism

1.2.2 Consider assessment for possible autism when a person has:

one or more of the following:

persistent difficulties in social interaction

persistent difficulties in social communication

stereotypic (rigid and repetitive) behaviours, resistance to change or

restricted interests, and

one or more of the following:

problems in obtaining or sustaining employment or education

difficulties in initiating or sustaining social relationships

previous or current contact with mental health or learning disability services

a history of a neurodevelopmental condition (including learning disabilities

and attention deficit hyperactivity disorder) or mental disorder.

1.2.3 For adults with possible autism who do not have a moderate or severe learning

disability, consider using the Autism-Spectrum Quotient – 10 items (AQ-10)[5].

(If a person has reading difficulties, read out the AQ-10.) If a person scores

above six on the AQ-10, or autism is suspected based on clinical judgement

(taking into account any past history provided by an informant), offer a

comprehensive assessment for autism.

1.2.4 For adults with possible autism who have a moderate or severe learning

disability, consider a brief assessment to ascertain whether the following

behaviours are present (if necessary using information from a family member,

partner or carer):

Autism: recognition, referral, diagnosis and management of adults

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guideline 142

difficulties in reciprocal social interaction including:

limited interaction with others (for example, being aloof, indifferent or

unusual)

interaction to fulfil needs only

interaction that is naive or one-sided

lack of responsiveness to others

little or no change in behaviour in response to different social situations

limited social demonstration of empathy

rigid routines and resistance to change

marked repetitive activities (for example, rocking and hand or finger flapping),

especially when under stress or expressing emotion.

If two or more of the above categories of behaviour are present, offer a

comprehensive assessment for autism.

Comprehensive (diagnostic, needs and risks) assessment of suspected autism

1.2.5 A comprehensive assessment should:

be undertaken by professionals who are trained and competent

be team-based and draw on a range of professions and skills

where possible involve a family member, partner, carer or other informant or use

documentary evidence (such as school reports) of current and past behaviour and

early development.

1.2.6 At the beginning of a comprehensive assessment, discuss with the person the

purpose of the assessment and how the outcome of the assessment will be fed

back to them. Feedback should be individualised, and consider involving a

family member, partner, carer or advocate, where appropriate, to support the

person and help explain the feedback.

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1.2.7 During a comprehensive assessment, enquire about and assess the following:

core autism signs and symptoms (difficulties in social interaction and

communication and the presence of stereotypic behaviour, resistance to change or

restricted interests) that have been present in childhood and continuing into

adulthood

early developmental history, where possible

behavioural problems

functioning at home, in education or in employment

past and current physical and mental disorders

other neurodevelopmental conditions

hyper- and/or hypo-sensory sensitivities and attention to detail.

Carry out direct observation of core autism signs and symptoms especially in social

situations.

1.2.8 To aid more complex diagnosis and assessment for adults, consider using a

formal assessment tool, such as:

the following tools for people who do not have a learning disability:

the Adult Asperger Assessment (AAA; includes the Autism-Spectrum

Quotient [AQ] and the Empathy Quotient [EQ])[6]

the Autism Diagnostic Interview – Revised (ADI-R)[7]

the Autism Diagnostic Observation Schedule – Generic (ADOS-G)[8]

the Asperger Syndrome (and high-functioning autism) Diagnostic Interview

(ASDI)[9]

the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)[10]

the following tools in particular for people with a learning disability:

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the ADOS-G

the ADI-R.

1.2.9 To organise and structure the process of a more complex assessment,

consider using a formal assessment tool, such as the Diagnostic Interview for

Social and Communication Disorders (DISCO)[11], the ADOS-G or the ADI-R.

1.2.10 During a comprehensive assessment, take into account and assess for

possible differential diagnoses and coexisting disorders or conditions, such as:

other neurodevelopmental conditions (use formal assessment tools for learning

disabilities)

mental disorders (for example, schizophrenia, depression or other mood disorders,

and anxiety disorders, in particular, social anxiety disorder and

obsessive–compulsive disorder)

neurological disorders (for example, epilepsy)

physical disorders

communication difficulties (for example, speech and language problems, and

selective mutism)

hyper- and/or hypo-sensory sensitivities.

1.2.11 Do not use biological tests, genetic tests or neuroimaging for diagnostic

purposes routinely as part of a comprehensive assessment.

1.2.12 During a comprehensive assessment, assess the following risks:

self-harm (in particular in people with depression or a moderate or severe learning

disability)

rapid escalation of problems

harm to others

self-neglect

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breakdown of family or residential support

exploitation or abuse by others.

Develop a risk management plan if needed.

1.2.13 Develop a care plan based on the comprehensive assessment, incorporating

the risk management plan and including any particular needs (such as

adaptations to the social or physical environment), and also taking into account

the needs of the family, partner or carer(s).

1.2.14 Provide a ‘health passport’ (for example, a laminated card) for adults with

autism, which includes information for all staff about the person’s care and

support needs. Advise the person to carry the health passport at all times.

1.2.15 As part of a comprehensive assessment consider developing a 24-hour crisis

management plan, where necessary in conjunction with specialist mental

health services, which should detail:

the likely trigger(s) for a crisis

the nature and speed of the reaction to any trigger(s), including details about the

way in which autism may impact on a person’s behaviour leading up to and during a

crisis

the role of the specialist team and other services (including outreach and out-ofhours

services) in responding to a crisis

advice to primary care professionals and other services on their responsibilities and

appropriate management in a crisis

advice for families, partners and carers about their role in a crisis

the nature of any changes or adaptations to the social or physical environment (see

recommendation 1.1.8) needed to manage a crisis.

1.2.16 Consider obtaining a second opinion (including referral to another specialist

autism team if necessary), if there is uncertainty about the diagnosis or if any

of the following apply after diagnostic assessment:

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guideline 142

disagreement about the diagnosis within the autism team

disagreement with the person, their family, partner, carer(s) or advocate about the

diagnosis

a lack of local expertise in the skills and competencies needed to reach diagnosis in

adults with autism

the person has a complex coexisting condition, such as a severe learning disability,

a severe behavioural, visual, hearing or motor problem, or a severe mental

disorder[12].

1.2.17 On an individual basis, and using information from the comprehensive

assessment and physical examination, and clinical judgement, consider further

investigations, including:

genetic tests, as recommended by the regional genetics centre, if there are specific

dysmorphic features, congenital anomalies and/or evidence of a learning disability

electroencephalography if there is suspicion of epilepsy

hearing or sight tests, if there is suspicion of hearing or visual impairment

other medical tests depending on individual signs and symptoms (for example,

sudden onset of challenging behaviour, change in usual patterns of behaviour,

sudden change in weight, or suspicion that the person might be in pain and is

unable to communicate this).

1.2.18 Offer all adults who have received a diagnosis of autism (irrespective of

whether they need or have refused further care and support) a follow-up

appointment to discuss the implications of the diagnosis, any concerns they

have about the diagnosis, and any future care and support they may require.

Assessment of challenging behaviour

1.2.19 Assessment of challenging behaviour should be integrated into a

comprehensive assessment for adults with autism.

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guideline 142

1.2.20 When assessing challenging behaviour carry out a functional analysis (see

recommendation 1.5.3) including identifying and evaluating any factors that

may trigger or maintain the behaviour, such as:

physical disorders

the social environment (including relationships with family members, partners,

carers and friends)

the physical environment, including sensory factors

coexisting mental disorders (including depression, anxiety disorders and psychosis)

communication problems

changes to routines or personal circumstances.

1.3 Identifying the correct interventions and monitoring

their use

1.3.1 When discussing and deciding on interventions with adults with autism,

consider:

their experience of, and response to, previous interventions

the nature and severity of their autism

the extent of any associated functional impairment arising from the autism, a

learning disability or a mental or physical disorder

the presence of any social or personal factors that may have a role in the

development or maintenance of any identified problem(s)

the presence, nature, severity and duration of any coexisting disorders

the identification of predisposing and possible precipitating factors that could lead to

crises if not addressed[13].

1.3.2 When discussing and deciding on care and interventions with adults with

autism, take into account the:

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increased propensity for elevated anxiety about decision-making in people with

autism

greater risk of altered sensitivity and unpredictable responses to medication

environment, for example whether it is suitably adapted for people with autism, in

particular those with hyper- and/or hypo-sensory sensitivities (see recommendation

1.1.8)

presence and nature of hyper- and/or hypo-sensory sensitivities and how these

might impact on the delivery of the intervention

importance of predictability, clarity, structure and routine for people with autism

nature of support needed to access interventions.

1.3.3 When discussing and deciding on interventions with adults with autism, provide

information about:

the nature, content and duration of any proposed intervention

the acceptability and tolerability of any proposed intervention

possible interactions with any current interventions and possible side effects

the implications for the continuing provision of any current interventions[13].

1.3.4 When deciding on options for pharmacological interventions for challenging

behaviour or coexisting mental disorders in adults with autism:

be aware of the potential for greater sensitivity to side effects and idiosyncratic

responses in people with autism and

consider starting with a low dose.

1.3.5 For any intervention used in adults with autism, there should be a regular

review of:

the benefits of the intervention, where feasible using a formal rating of the target

behaviour(s)

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any adverse events

specific monitoring requirements of pharmacological interventions as highlighted by

the summary of product characteristics

adherence to the intervention.

1.4 Interventions for autism

Psychosocial interventions for the core symptoms of autism

1.4.1 For adults with autism without a learning disability or with a mild to moderate

learning disability, who have identified problems with social interaction,

consider:

a group-based social learning programme focused on improving social interaction

an individually delivered social learning programme for people who find groupbased

activities difficult.

1.4.2 Social learning programmes to improve social interaction should typically

include:

modelling

peer feedback (for group-based programmes) or individual feedback (for individually

delivered programmes)

discussion and decision-making

explicit rules

suggested strategies for dealing with socially difficult situations.

1.4.3 Do not provide facilitated communication for adults with autism.

Psychosocial interventions focused on life skills

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1.4.4 For adults with autism of all ranges of intellectual ability, who need help with

activities of daily living, consider a structured and predictable training

programme based on behavioural principles.

1.4.5 For adults with autism without a learning disability or with a mild to moderate

learning disability, who are socially isolated or have restricted social contact,

consider:

a group-based structured leisure activity programme

an individually delivered structured leisure activity programme for people who find

group-based activities difficult.

1.4.6 A structured leisure activity programme should typically include:

a focus on the interests and abilities of the participant(s)

regular meetings for a valued leisure activity

for group-based programmes, a facilitator with a broad understanding of autism to

help integrate the participants

the provision of structure and support.

1.4.7 For adults with autism without a learning disability or with a mild to moderate

learning disability, who have problems with anger and aggression, offer an

anger management intervention, adjusted to the needs of adults with autism.

1.4.8 Anger management interventions should typically include:

functional analysis of anger and anger-provoking situations

coping-skills training and behaviour rehearsal

relaxation training

development of problem-solving skills.

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1.4.9 For adults with autism without a learning disability or with a mild learning

disability, who are at risk of victimisation, consider anti-victimisation

interventions based on teaching decision-making and problem-solving skills.

1.4.10 Anti-victimisation interventions should typically include:

identifying and, where possible, modifying and developing decision-making skills in

situations associated with abuse

developing personal safety skills.

1.4.11 For adults with autism without a learning disability or with a mild learning

disability, who are having difficulty obtaining or maintaining employment,

consider an individual supported employment programme.

1.4.12 An individual supported employment programme should typically include:

help with writing CVs and job applications and preparing for interviews

training for the identified work role and work-related behaviours

carefully matching the person with autism with the job

advice to employers about making reasonable adjustments to the workplace

continuing support for the person after they start work

support for the employer before and after the person starts work, including autism

awareness training.

Biomedical (pharmacological, physical and dietary) interventions and the core symptoms

of autism

1.4.13 Do not use anticonvulsants for the management of core symptoms of autism in

adults.

1.4.14 Do not use chelation for the management of core symptoms of autism in

adults.

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1.4.15 Do not use the following interventions for the management of core symptoms

of autism in adults:

exclusion diets (such as gluten- or casein-free and ketogenic diets)

vitamins, minerals and dietary supplements (such as vitamin B6 or iron

supplementation).

1.4.16 Do not use drugs specifically designed to improve cognitive functioning (for

example, cholinesterase inhibitors) for the management of core symptoms of

autism or routinely for associated cognitive or behavioural problems in adults.

1.4.17 Do not use oxytocin for the management of core symptoms of autism in adults.

1.4.18 Do not use secretin for the management of core symptoms of autism in adults.

1.4.19 Do not use testosterone regulation for the management of core symptoms of

autism in adults.

1.4.20 Do not use hyperbaric oxygen therapy for the management of core symptoms

of autism in adults.

1.4.21 Do not use antipsychotic medication for the management of core symptoms of

autism in adults.

1.4.22 Do not use antidepressant medication for the routine management of core

symptoms of autism in adults.

1.5 Interventions for challenging behaviour

1.5.1 Before initiating other interventions for challenging behaviour, address any

identified factors that may trigger or maintain the behaviour (see

recommendation 1.2.20) by offering:

the appropriate care for physical disorders (for example, gastrointestinal problems

or chronic pain)

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treatment for any coexisting mental disorders, including psychological and

pharmacological interventions (for example, anxiolytic, antidepressant or

antipsychotic medication), informed by existing NICE guidance

interventions aimed at changing the physical or social environment (for example,

who the person lives with) when problems are identified, such as:

advice to the family, partner or carer(s)

changes or accommodations to the physical environment (see

recommendation 1.1.8).

1.5.2 Offer a psychosocial intervention for the challenging behaviour first if no

coexisting mental or physical disorder, or problem related to the physical or

social environment, has been identified as triggering or maintaining challenging

behaviour.

1.5.3 When deciding on the nature and content of a psychosocial intervention to

address challenging behaviour, use a functional analysis. The functional

analysis should facilitate the targeting of interventions that address the

function(s) of problem behaviour(s) by:

providing information, from a range of environments, on:

factors that appear to trigger the behaviour

the consequences of the behaviour (that is, the reinforcement received as a

result of their behaviour[14])

identifying trends in behaviour occurrence, factors that may be evoking that

behaviour, and the needs that the person is attempting to meet by performing the

behaviour.

1.5.4 In addition to the functional analysis, base the choice of intervention(s) on:

the nature and severity of the behaviour

the person’s physical needs and capabilities

the physical and social environment

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the capacity of staff and families, partners or carers to provide support

the preferences of the person with autism and, where appropriate, their family,

partner or carer(s)

past history of care and support.

Psychosocial interventions for challenging behaviour

1.5.5 Psychosocial interventions for challenging behaviour should be based on

behavioural principles and informed by a functional analysis of behaviour (see

recommendation 1.5.3).

1.5.6 Psychosocial interventions for challenging behaviour should include:

clearly identified target behaviour(s)

a focus on outcomes that are linked to quality of life

assessment and modification of environmental factors that may contribute to

initiating or maintaining the behaviour

a clearly defined intervention strategy

a clear schedule of reinforcement, and capacity to offer reinforcement promptly and

contingently on demonstration of the desired behaviour

a specified timescale to meet intervention goals (to promote modification of

intervention strategies that do not lead to change within a specified time)

a systematic measure of the target behaviour(s) taken before and after the

intervention to ascertain whether the agreed outcomes are being met.

Combined interventions for challenging behaviour

1.5.7 Consider antipsychotic medication[15] in conjunction with a psychosocial

intervention for challenging behaviour when there has been no or limited

response to psychosocial or other interventions (such as environmental

adaptations). Antipsychotic medication should be prescribed by a specialist

and quality of life outcomes monitored carefully. Review the effects of the

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medication after 3–4 weeks and discontinue it if there is no indication of a

clinically important response at 6 weeks.

Pharmacological interventions for challenging behaviour

1.5.8 Consider antipsychotic medication[15] for challenging behaviour on its own when

psychosocial or other interventions could not be delivered because of the

severity of the challenging behaviour. Antipsychotic medication should be

prescribed by a specialist and quality of life outcomes monitored carefully.

Review the effects of the medication after 3–4 weeks and discontinue it if there

is no indication of a clinically important response at 6 weeks.

1.5.9 Do not routinely use anticonvulsants for the management of challenging

behaviour in adults with autism.

1.6 Interventions for coexisting mental disorders

1.6.1 Staff delivering interventions for coexisting mental disorders to adults with

autism should:

have an understanding of the core symptoms of autism and their possible impact on

the treatment of coexisting mental disorders

consider seeking advice from a specialist autism team regarding delivering and

adapting these interventions for people with autism.

Psychosocial interventions for coexisting mental disorders

1.6.2 For adults with autism and coexisting mental disorders, offer psychosocial

interventions informed by existing NICE guidance for the specific disorder.

1.6.3 Adaptations to the method of delivery of cognitive and behavioural

interventions for adults with autism and coexisting common mental disorders

should include:

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a more concrete and structured approach with a greater use of written and visual

information (which may include worksheets, thought bubbles, images and ‘tool

boxes’)

placing greater emphasis on changing behaviour, rather than cognitions, and using

the behaviour as the starting point for intervention

making rules explicit and explaining their context

using plain English and avoiding excessive use of metaphor, ambiguity and

hypothetical situations

involving a family member, partner, carer or professional (if the person with autism

agrees) to support the implementation of an intervention

maintaining the person’s attention by offering regular breaks and incorporating their

special interests into therapy if possible (such as using computers to present

information).

Pharmacological interventions for coexisting mental disorders

1.6.4 For adults with autism and coexisting mental disorders, offer pharmacological

interventions informed by existing NICE guidance for the specific disorder.

1.7 Assessment and interventions for families, partners and

carers

1.7.1 Offer families, partners and carers of adults with autism an assessment of their

own needs including:

personal, social and emotional support

support in their caring role, including respite care and emergency plans

advice on and support in obtaining practical support

planning of future care for the person with autism.

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1.7.2 When the needs of families, partners and carers have been identified, provide

information about, and facilitate contact with, a range of support groups

including those specifically designed to address the needs of families, partners

and carers of people with autism.

1.7.3 Offer information, advice, training and support to families, partners and carers

if they:

need help with the personal, social or emotional care of the family member, partner

or friend, or

are involved in supporting the delivery of an intervention for their family member,

partner or friend (in collaboration with professionals).

1.8 Organisation and delivery of care

Developing local care pathways

1.8.1 Local care pathways should be developed to promote implementation of key

principles of good care. Pathways should be:

negotiable, workable and understandable for adults with autism, their families,

partners and carers, and professionals

accessible and acceptable to all people in need of the services served by the

pathway

responsive to the needs of adults with autism and their families, partners and carers

integrated so that there are no barriers to movement between different levels of the

pathway

outcome focused (including measures of quality, service user experience and

harm)[13].

1.8.2 Autism strategy groups should be responsible for developing, managing and

evaluating local care pathways. The group should appoint a lead professional

responsible for the local autism care pathway. The aims of the strategy group

should include:

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developing clear policy and protocols for the operation of the pathway

ensuring the provision of multi-agency training about signs and symptoms of autism,

and training and support on the operation of the pathway

making sure the relevant professionals (health, social care, housing, educational

and employment services and the third sector) are aware of the local autism

pathway and how to access services

supporting the integrated delivery of services across all care settings

supporting the smooth transition to adult services for young people going through

the pathway

auditing and reviewing the performance of the pathway[13].

1.8.3 The autism strategy group should develop local care pathways that promote

access to services for all adults with autism, including:

people with coexisting physical and mental disorders (including substance misuse)

women

people with learning disabilities

older people

people from black and minority ethnic groups

transgender people

homeless people

people from the traveller community

people in the criminal justice system

parents with autism.

1.8.4 When providing information about local care pathways to adults with autism

and their families, partners and carers, all professionals should:

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take into account the person’s knowledge and understanding of autism and its care

and management

ensure that such information is appropriate to the communities using the pathway[13].

1.8.5 The autism strategy group should design local care pathways that promote a

range of evidence-based interventions at each step in the pathway and support

adults with autism in their choice of interventions[13].

1.8.6 The autism strategy group should design local care pathways that respond

promptly and effectively to the changing needs of all populations served by the

pathways. Pathways should have in place:

clear and agreed goals for the services offered to adults with autism

robust and effective means for measuring and evaluating the outcomes associated

with the agreed goals

clear and agreed mechanisms for responding promptly to identified changes to

people’s needs[13].

1.8.7 The autism strategy group should design local care pathways that provide an

integrated programme of care across all care settings. Pathways should:

minimise the need for transition between different services or providers

allow services to be built around the pathway and not the pathway around the

services

establish clear links (including access and entry points) to other care pathways

(including those for physical healthcare needs)

have designated staff who are responsible for the coordination of people’s

engagement with the pathway[13].

Improving access to care

1.8.8 There should be a single point of referral (including self-referral) to specialist

services for adults with autism.

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1.8.9 Support access to services and increase the uptake of interventions by:

delivering assessment and interventions in a physical environment that is

appropriate for people with hyper- and/or hypo-sensory sensitivities (see

recommendation 1.1.8)

changing the professional responsible for the person’s care if a supportive and

caring relationship cannot be established.

1.8.10 Support access to services and increase the uptake of interventions by:

ensuring systems (for example, care coordination or case management) are in

place to provide for the overall coordination and continuity of care for adults with

autism

designating a professional to oversee the whole period of care (usually a member of

the primary healthcare team for those not in the care of a specialist autism team or

mental health or learning disability service)[13].

Residential care

1.8.11 If residential care is needed for adults with autism it should usually be provided

in small, local community-based units (of no more than six people and with

well-supported single person accommodation). The environment should be

structured to support and maintain a collaborative approach between the

person with autism and their family, partner or carer(s) for the development and

maintenance of interpersonal and community living skills.

1.8.12 Residential care environments should include activities that are:

structured and purposeful

designed to promote integration with the local community and use of local amenities

clearly timetabled with daily, weekly and sequential programmes that promote

choice and autonomy.

1.8.13 Residential care environments should have:

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designated areas for different activities that provide visual cues about expected

behaviour

adaptations to the physical environment for people with hyper- and/or hypo-sensory

sensitivities (see recommendation 1.1.8)

inside and outside spaces where the person with autism can be alone (for example,

if they are over-stimulated).

1.8.14 Residential care staff should:

understand the principles and attitudes underpinning the effective delivery of

residential care for adults with autism

work in collaboration with health and community care staff from a range of specialist

services to support the delivery of a comprehensive care plan

be trained in assessing and supporting the needs of adults with autism

be consistent and predictable, but with some flexibility to allow change and choice

be committed to involving families, partners and carers.

[4] See Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum (NICE clinical guideline 128).

[5] Allison C, Auyeung B, Baron-Cohen S (2012) Towards brief ‘red flags’ for autism screening: the

short Autism Spectrum Quotient and the short Quantitative Checklist for Autism in toddlers in

1000 cases and 3000 controls. Journal of the American Academy of Child and Adolescent

Psychiatry 51: 202–12.

[6] Baron-Cohen S, Wheelwright S, Robinson J, et al. (2005) The Adult Asperger Assessment

(AAA): a diagnostic method. Journal of Autism and Developmental Disorders 35: 807–19.

[7] Lord C, Pickles A, McLennan J, et al. (1997) Diagnosing autism: analyses of data from the

Autism Diagnostic Interview. Journal of Autism and Developmental Disorders 27: 501–17.

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on the autism spectrum

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[8] Lord C, Risi S, Lambrecht L, et al. (2000) The Autism Diagnostic Observation Schedule –

Generic: a standard measure of social and communication deficits associated with the spectrum

of autism. Journal of Autism and Developmental Disorders 30: 205–23.

[9] Gillberg C, Gillberg C, Rastam M, et al. (2001) The Asperger Syndrome (and high-functioning

autism) Diagnostic Interview (ASDI): a preliminary study of a new structured clinical interview.

Autism 5: 57–66.

[10] Ritvo RA, Ritvo ER, Guthrie D, et al. (2011) The Ritvo Autism Asperger Diagnostic Scale –

Revised (RAADS-R): a scale used to assist the diagnosis of autism spectrum disorders in adults:

an international validation study. Journal of Autism and Developmental Disorders 41: 1076–89.

[11] Wing L, Leekam L, Libby S, et al. (2002) The Diagnostic Interview for Social and

Communication Disorders: background, inter-rater reliability and clinical use. Journal of Child

Psychology and Psychiatry 43: 307–25.

[12] Adapted from Autism: recognition, referral and diagnosis of children and young people on the

autism spectrum (NICE clinical guideline 128).

[13] Adapted from Common mental health disorders: identification and pathways to care (NICE

clinical guideline 123).

[14] Reinforcement may be by the person with autism or those working with or caring for them.

[15] At the time of publication (June 2012), no antipsychotic medication had a UK marketing

authorisation for this indication in adults with autism. Informed consent should be obtained and

documented.

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2 Notes on the scope of the guidance

NICE guidelines are developed in accordance with a scope that defines what the guideline will

and will not cover.

How this guideline was developed

NICE commissioned the National Collaborating Centre for Mental Health to develop this

guideline. The Centre established a Guideline Development Group (see appendix A), which

reviewed the evidence and developed the recommendations. An independent Guideline

Review Panel oversaw the development of the guideline (see appendix B).

There is more information about how NICE clinical guidelines are developed on the NICE

website. A booklet, ‘How NICE clinical guidelines are developed: an overview for

stakeholders, the public and the NHS’ is available.

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3 Implementation

NICE has developed tools to help organisations implement this guidance.

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4 Research recommendations

The Guideline Development Group has made the following recommendations for research,

based on its review of evidence, to improve NICE guidance and patient care in the future. The

Guideline Development Group’s full set of research recommendations is detailed in the full

guideline.

4.1 Facilitated self-help for anxiety and depression in adults

with autism

What is the clinical and cost effectiveness of facilitated self-help for the treatment of mild anxiety

and depressive disorders in adults with autism?

Why this is important

Anxiety and depressive disorders commonly coexist in people with autism and are associated

with poorer health outcomes and quality of life. This may occur because of the direct impact of

the anxiety or depression but also because of a negative interaction with the core symptoms of

autism. There is limited access and poor uptake of facilitated self-help by people with autism,

largely due to limited availability but also because current systems for the delivery of such

interventions are not adapted for use by people with autism. In adults without autism, facilitated

self-help is an effective intervention for mild to moderate depression and anxiety. The

development of novel methods for the delivery of facilitated self-help could make effective

interventions available to a wider group of people.

The suggested programme of research would need to: (a) develop current methods for the

delivery of self-help measures to take into account the impact of autism and possibly include

developments in the nature of the materials, the methods for their delivery and the nature,

duration and extent of their facilitation; (b) test the feasibility of the novel methods in a series of

pilot studies; and (c) formally evaluate the outcomes (including symptoms, satisfaction and

quality of life) in a large-scale randomised trial.

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4.2 Cognitive behavioural therapy (CBT) for anxiety

disorders in adults with autism

What is the clinical and cost effectiveness of CBT for the treatment of moderate and severe

anxiety disorders in adults with autism?

Why this is important

Anxiety disorders commonly coexist in people with autism and are associated with poorer health

outcomes and quality of life. This may occur because of the direct impact of the anxiety but also

because of a negative interaction with the core symptoms of autism. There is limited access and

poor uptake of psychological treatment services by people with autism, largely due to limited

availability but also because current systems for the delivery of such interventions are not

adapted for use for people with autism. In adults without autism, CBT is an effective intervention

for moderate to severe anxiety disorders. The adaptation of CBT for adults with autism and a

coexisting anxiety disorder could make effective interventions more widely available.

The suggested programme of research would need to: (a) develop current methods for the

delivery of CBT to take into account the impact of autism and the nature and duration of the

intervention; (b) test the feasibility of the novel treatments in a series of pilot studies (for the

commonly experienced anxiety disorders in autism); and (c) formally evaluate the outcomes

(including symptoms, satisfaction and quality of life) in a large-scale randomised controlled trial.

4.3 Pharmacological treatments for depression in adults

with autism

What is the clinical and cost effectiveness of selective serotonin reuptake inhibitors (SSRIs) for

the treatment of moderate and severe depression in adults with autism?

Why this is important

Depression commonly coexists with autism and is associated with poorer health outcomes and

quality of life. This may occur because of the direct impact of the depression but also because of

a negative interaction with the core symptoms of autism. There is poor recognition and

consequently suboptimal treatment for depression in adults with autism. However, it is probable

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that when depression is recognised the most commonly used treatment is antidepressant

medication as it is an effective intervention for moderate to severe depression. Little is known

about the extent of the use of antidepressant medication, adherence to prescribed medication

and its effectiveness in adults with autism. Moreover, concerns have also been raised about the

increased sensitivity of people with autism to the side effects of SSRIs and other antidepressant

drugs.

The suggested programme of research would need to: (a) describe the current use of SSRIs in

adults with depression and autism; (b) review the potential impact of increased sensitivity of

adults with autism to the side effects of medication; and (c) formally evaluate the outcomes

(including symptoms, satisfaction and quality of life) of SSRIs in a series of randomised

controlled trials.

4.4 The structure and organisation of specialist teams

What structure and organisation of specialist autism teams are associated with improvements in

care for people with autism?

Why this is important

The Department of Health’s autism strategy (2010) proposes the introduction of a range of

specialist services for people with autism; these will usually be built around specialist autism

teams. However, there is little evidence to guide the establishment and development of these

teams. There is uncertainty about the precise nature of the population to be served (all people

with autism or only those who have an IQ of 70 or above), the composition of the team, the

extent of the team’s role (for example, diagnosis and assessment only, a primarily advisory role

or a substantial care coordination role), the interventions provided by the team, and the team’s

role and relationship with regard to non-statutory care providers. Therefore it is likely that in the

near future a number of different models will be developed, which are likely to have varying

degrees of success in meeting the needs of people with autism. Given the significant expansion

of services, this presents an opportunity for a large-scale observational study, which should

provide important information on the characteristics of teams associated with positive outcomes

for people with autism in terms of access to services and effective coordination of care.

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4.5 Augmentative communication devices for adults with

autism

What is the clinical and cost effectiveness of augmentative communication devices for adults

with autism?

Why this is important

Many people with autism experience significant communication problems (for example, the

absence of any spoken language or significant deficits in interpersonal skills), which have a

profound effect on their ability to lead a full and rewarding life. It is probable that these problems

are related to the core symptoms of autism and are likely to persist for most people given the lifelong

course of autism and the lack of effective interventions for these core symptoms. A number

of communication devices have been developed for autism but few, if any, have been subjected

to a proper evaluation in adults. Despite this lack of formal evaluation, individual services have

made considerable investments in augmentative communication devices. Research that provides

high-quality evidence on the acceptability and the clinical and cost effectiveness of augmentative

communication devices could bring about significant improvements in the lives of adults with

autism.

The suggested programme of research would need to identify current devices for which there is:

(a) some evidence of benefit (for example, case series and small-scale pilot studies); (b) some

evidence that it meets a key communication need for people with autism (based on reviews of

people’s need in this area); and (c) indication that the device is feasible for routine use. The

identified device(s) should then be formally evaluated in a large-scale randomised trial.

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5 Other versions of this guideline

5.1 Full guideline

The full guideline, Autism: recognition, referral, diagnosis and management of adults on the

autism spectrum, contains details of the methods and evidence used to develop the guideline. It

is published by the National Collaborating Centre for Mental Health.

5.2 NICE pathway

The recommendations from this guideline have been incorporated into a NICE pathway.

5.3 Information for the public

NICE has produced information for the public explaining this guideline.

We encourage NHS and voluntary sector organisations to use text from this information in their

own materials about autism.

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6 Related NICE guidance

Published

Service user experience in adult mental health. NICE clinical guideline 136 (2011).

Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum. NICE clinical guideline 128 (2011).

Common mental health disorders. NICE clinical guideline 123 (2011).

Generalised anxiety disorder and panic disorder (with or without agoraphobia) in adults.

NICE clinical guideline 113 (2011).

Depression in adults with a chronic physical health problem. NICE clinical guideline 91

(2009).

Depression. NICE clinical guideline 90 (2009).

Attention deficit hyperactivity disorder. NICE clinical guideline 72 (2008).

Obsessive-compulsive disorder. NICE clinical guideline 31 (2005).

Post-traumatic stress disorder (PTSD). NICE clinical guideline 26 (2005).

Under development

NICE is developing the following guidance (details available from the NICE website):

Social anxiety disorder. NICE clinical guideline. Publication expected 2013.

Autism: the management and support of children and young people on the autism spectrum.

NICE clinical guideline. Publication expected 2013.

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7 Updating the guideline

NICE clinical guidelines are updated so that recommendations take into account important new

information. New evidence is checked 3 years after publication, and healthcare professionals

and patients are asked for their views; we use this information to decide whether all or part of a

guideline needs updating. If important new evidence is published at other times, we may decide

to do a more rapid update of some recommendations. Please see our website for information

about updating the guideline.

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Appendix A: The Guideline Development Group, National

Collaborating Centre and NICE project team

Guideline Development Group

Professor Simon Baron-Cohen (Chair, Guideline Development Group)

Director, Autism Research Centre, Psychiatry Department, University of Cambridge; Theme

Lead, NIHR CLAHRC for Cambridgeshire and Peterborough NHS Foundation Trust

Professor Stephen Pilling (Facilitator, Guideline Development Group)

Director, National Collaborating Centre for Mental Health; Director, Centre for Outcomes

Research and Effectiveness, University College London

Professor Gillian Baird

Consultant Paediatrician and Professor of Paediatric Neurodisability, Guy’s and St Thomas’ NHS

Foundation trust and King’s Health partners

Dr Carole Buckley

General Practitioner, Bristol

Dr Peter Carpenter

Consultant Psychiatrist (Learning Disabilities), Associate Medical Lead Learning Disabilities and

Specialist Adult Services, Avon & Wiltshire Partnership NHS Trust

Dr Juli Crocombe

Consultant Psychiatrist, St George’s Hospital, Stafford

Ms Jackie Dziewanowska

Autism Spectrum Disorder Nurse Consultant, Nottinghamshire Healthcare NHS trust; Clinical

Lead, Nottingham City Asperger Service

Ms Annie Foster-Jones

Autism Specialist Nurse, Cheshire & Wirral Partnership NHS Foundation Trust, Learning

Disabilities Clinical Service Unit

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Dr Marga Hogenboom

General Practitioner, Aberdeen

Professor Patricia Howlin

Professor of Clinical Child Psychology, King’s College London; Consultant Clinical Psychologist

Mr Campbell Main

Lay member (representing service user and carer concerns)

Ms Melissa McAuliffe

Asperger Specialist – Social Care, Rehabilitation & Recovery Team, East London NHS

Foundation Trust

Mr Richard Mills

Director of Research, The National Autistic Society; Honorary Secretary and Research Director,

Research Autism, London

Ms Joan Panton

Lay member (representing service user and carer concerns)

Ms Maggi Rigg

Advisory Board Member, Cambian Group, London

Ms Anya Ustaszewski

Autism and Disability Awareness Trainer and Rights Advocate; Musician and Composer

(freelance); representing service user and carer concerns

National Collaborating Centre for Mental Health

Mr Nadir Cheema

Health Economist

Ms Naomi Glover

Research Assistant

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Ms Flora Kaminski

Research Assistant

Ms Rachael Lee

Research Assistant (September 2011 onwards)

Ms Katherine Leggett

Project Manager

Dr Ifigeneia Mavranezouli

Senior Health Economist

Dr Odette Megnin-Viggars

Systematic Reviewer (March 2011 onwards)

Ms Sarah Stockton

Senior Information Scientist

Dr Clare Taylor

Senior Editor

Dr Amina Udechuku

Systematic Reviewer (March 2010 to June 2011)

NICE project team

Christine Carson

Centre for Clinical Practice Director

Caroline Keir

Guideline Commissioning Manager

Emma Banks

Guideline Coordinator

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Linda Sheppard

Technical Lead

Jasdeep Hayre

Health Economist

Catharine Baden-Daintree

Editor

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Appendix B: The Guideline Review Panel

The Guideline Review Panel is an independent panel that oversees the development of the

guideline and takes responsibility for monitoring adherence to NICE guideline development

processes. In particular, the panel ensures that stakeholder comments have been adequately

considered and responded to. The panel includes members from the following perspectives:

primary care, secondary care, lay, public health and industry.

John Hyslop (Chair)

Consultant Radiologist, Royal Cornwall Hospital NHS Trust

Sarah Fishburn

Lay member

Kieran Murphy

Health Economics & Reimbursement Manager, Johnson & Johnson Medical Devices &

Diagnostics (UK)

Ash Paul

Deputy Medical Director, Health Commission Wales

Liam Smeeth

Professor of Clinical Epidemiology, London School of Hygiene and Tropical Medicine

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Glossary

Augmentative communication

An alternative way of helping people with communication difficulties by using assistive

technology such as computers or other devices, such as a speech output device.

Behavioural principles

Ideas, such as reinforcement and function of behaviour, that underlie behavioural therapies and

underpin many interventions teaching adaptive skills for community living for people with autism,

including those with challenging behaviour.

Care pathway

A system designed to improve the overall quality of healthcare by standardising the care process

and promoting organised efficient service user care based on best evidence to optimise service

user outcomes.

Challenging behaviour

A term used to describe behaviour that is a result of the interaction between individual and

environmental factors, and includes stereotypic behaviour (such as rocking or hand flapping),

anger, aggression, self-injury, and disruptive or destructive behaviour. Such behaviour is seen as

challenging when it affects the person’s or other people’s quality of life and or jeopardises their

safety.

Chelation

A procedure that involves using one or more substances (chelating agents) to remove materials

that are toxic, including heavy metals such as mercury, from the body.

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Easy read

An accessible format for written communication designed for people with a learning disability. It

uses simple jargon-free language, short sentences and illustrations.

Facilitated communication

A therapeutic intervention whereby a facilitator supports the hand or arm of a person with autism

while using a keyboard or other devices with the aim of helping the person to develop pointing

skills and to communicate.

Functional analysis

A method for understanding the causes and consequences of behaviour and its relationship to

particular stimuli, and the function of the behaviour. The function of a particular behaviour can be

analysed by typically identifying (1) the precursor or trigger of the behaviour, (2) the behaviour

itself, and (3) the consequence of the behaviour.

Hyper- and hypo-sensory sensitivities

Being over-sensitive (hyper-sensitive) or under-sensitive (hypo-sensitive) to sound, light, colour,

smell or taste, which can cause anxiety or even pain in a person with autism.

Informant

A family member, partner, carer or other third party known to the person with autism who is able

to provide information about the person’s symptoms and behaviour so that professionals can

have a fuller picture of the person’s developmental history. Some assessment tools for autism

require information from informants.

Learning disability

Lower intellectual ability (usually defined as an IQ of less than 70) that leads to problems in

learning, developing new skills, communication and carrying out daily activities. Learning

disability severities are defined by the following IQ scores: mild=50–69, moderate=35–49 and

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severe=20–34. A person with a mild to moderate learning disability may only need support in

certain areas. However, a person with a moderate to severe learning disability may have no

speech or limited communication, a significantly reduced ability to learn new skills and require

support with daily activities such as dressing and eating. Learning disabilities are different from

‘learning difficulties’, like dyslexia, which do not affect intellect. Learning disability is sometimes

also called ‘intellectual disability’.

Modelling

A technique used in behavioural therapy that utilises video and other media. The service user

observes target behaviour on the video or computer screen, and repeats it.

Reinforcement

A technique used in behavioural therapy to teach ‘rules’ of social engagement through providing

prompts for behaviour.

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About this guideline

NICE clinical guidelines are recommendations about the treatment and care of people with

specific diseases and conditions in the NHS in England and Wales.

The guideline was developed by the National Collaborating Centre for Mental Health, which is

based at the British Psychological Society and the Royal College of Psychiatrists. The

Collaborating Centre worked with a group of healthcare professionals (including consultants,

GPs and nurses), patients and carers, and technical staff, who reviewed the evidence and

drafted the recommendations. The recommendations were finalised after public consultation.

The methods and processes for developing NICE clinical guidelines are described in The

guidelines manual.

The recommendations from this guideline have been incorporated into a NICE pathway. We

have produced information for the public explaining this guideline. Tools to help you put the

guideline into practice and information about the evidence it is based on are also available.

Changes after publication

October 2012 : minor maintenance

Your responsibility

This guidance represents the view of NICE, which was arrived at after careful consideration of

the evidence available. 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, in consultation with the patient and/or guardian or carer, and informed by

the summary of product characteristics of any drugs they are considering.

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

Commissioners and providers are reminded that it is their responsibility to implement the

guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have

regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a

way that would be inconsistent with compliance with those duties.

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material can be downloaded for private research and study, and may be reproduced for

educational and not-for-profit purposes. No reproduction by or for commercial organisations, or

for commercial purposes, is allowed without the written permission of NICE.

Contact NICE

National Institute for Health and Clinical Excellence

Level 1A, City Tower, Piccadilly Plaza, Manchester M1 4BT

www.nice.org.uk

nice@nice.org.uk

0845 033 7780

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