Autism spectrum disorder in adults: diagnosis and management

This guideline covers diagnosing and managing suspected or confirmed autism spectrum disorder (autism, Aspergers syndrome and atypical autism) in people aged 18 and over. It aims to improve access and engagement with interventions and services, and the experience of care, for people with autism.

# 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'). Autistic people 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 autistic adults 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, autistic people 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 autistic person and their family, partner or carer(s) communicate right from the start and the autistic person is involved in the decisions relating to their care. This lays the foundation for a long-term understanding between the autistic person, their family, partner or carer(s) and the professionals supporting their needs. However, many adults 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). 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, autistic adults.
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.
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, recommendations are marked with a note if drugs 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.# Recommendations
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.
People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

# General principles of care

## Principles for working with autistic adults and their families, partners and carers
All staff working with autistic adults should:
work in partnership with autistic adults and, where appropriate, with their families, partners and carers
-ffer support and care respectfully
take time to build a trusting, supportive, empathic and non-judgemental relationship as an essential part of care.
All staff working with autistic adults 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.
All health and social care professionals providing care and support for autistic adults 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
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.
All health and social care professionals providing care and support for autistic adults 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.
All health and social care professionals providing care and support for autistic adults 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 autistic person 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 autistic person) if required.
All health and social care professionals providing care and support for autistic adults and their families, partners and carers should ensure that they are:
familiar with recognised local and national sources (organisations and websites) of information and/or support for autistic people
able to discuss and advise on how to access and engage with these resources.
Encourage autistic adults 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.
In all settings, take into account the physical environment in which autistic adults are assessed, supported and cared for, including any factors that may trigger behaviour that challenges. 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.
All health and social care professionals providing care and support for autistic adults should:
be aware of under-reporting and under-recognition of physical disorders in autistic people
be vigilant for unusual likes and dislikes about food and/or lack of physical activity
-ffer 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.
All staff working with autistic adults 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 autistic person misunderstanding another person's behaviour or to their possible exploitation by others.
Ensure that autistic adults 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 autistic adults and children
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
In order to effectively provide care and support for autistic adults, the local autism multi-agency strategy group 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 autistic people and their families, partners and carers.
In each area a specialist community-based multidisciplinary team for autistic adults (the specialist autism team) should be established. The membership should include:
psychologists with training and experience in working with autistic adults
nurses
-ccupational 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).
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 autistic adults (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 autistic adults living in specialist residential accommodation
training, support and consultation for staff who care for autistic adults in residential and community settings.

## Involving families, partners and carers
Discuss with autistic adults 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).
If the autistic person wants their family, partner or carer(s) to be involved, encourage this involvement and:
negotiate between the autistic person 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 autistic person 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 autistic person and their family, partner or carer(s).
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 carer's assessment of their own physical and mental health needs, and how to access this (see the NICE guideline on supporting adult carers).
If an autistic person 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 autistic people 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.

# Identification and assessment

## Principles for the effective assessment of autism
Staff who have responsibility for the identification or assessment of autistic adults should adapt these procedures, if necessary, to ensure their effective 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
Consider assessment for possible autism when a person has:
-ne 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
-ne 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.
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). (If a person has reading difficulties, read out the AQ-10.) If a person scores 6 or above 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. 
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):
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
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.
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.
During a comprehensive assessment, enquire about and assess the following:
core autism features (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
-ther neurodevelopmental conditions
hyper- and/or hypo-sensory sensitivities and attention to detail. Carry out direct observation of core autism features especially in social situations.
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  and the Empathy Quotient )
the Autism Diagnostic Interview  Revised (ADI-R)
the Autism Diagnostic Observation Schedule  Generic (ADOS-G)
the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)
the Ritvo Autism Asperger Diagnostic Scale  Revised (RAADS-R)
the following tools in particular for people with a learning disability:
the ADOS-G
the ADI-R.
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), the ADOS-G or the ADI-R.
During a comprehensive assessment, take into account and assess for possible differential diagnoses and coexisting disorders or conditions, such as:
-ther 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 obsessivecompulsive 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.
Do not use biological tests, genetic tests or neuroimaging for diagnostic purposes routinely as part of a comprehensive assessment.
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
breakdown of family or residential support
exploitation or abuse by others. Develop a risk management plan if needed.
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).
Provide a 'health passport' (for example, a laminated card) for autistic adults, 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.
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-of-hours 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.
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:
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 autistic adults
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.
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
-ther medical tests depending on individual signs and symptoms (for example, sudden onset of behaviour that challenges, 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).
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 behaviour that challenges
Assessment of behaviour that challenges should be integrated into a comprehensive assessment for autistic adults.
When assessing behaviour that challenges 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.

# Identifying the correct interventions and monitoring their use
When discussing and deciding on interventions with autistic adults, 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.
When discussing and deciding on care and interventions with autistic adults, take into account the:
increased propensity for elevated anxiety about decision-making in autistic people
greater risk of altered sensitivity and unpredictable responses to medication
environment, for example whether it is suitably adapted for autistic people, 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 autistic people
nature of support needed to access interventions.
When discussing and deciding on interventions with autistic adults, 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.
When deciding on options for pharmacological interventions for behaviour that challenges or coexisting mental disorders in autistic adults:
be aware of the potential for greater sensitivity to side effects and idiosyncratic responses in autistic people and
consider starting with a low dose.
For any intervention used in autistic adults, there should be a regular review of:
the benefits of the intervention, where feasible using a formal rating of the target behaviour(s)
any adverse events
specific monitoring requirements of pharmacological interventions as highlighted by the summary of product characteristics
adherence to the intervention.

# Interventions for autism

## Psychosocial interventions for the core features of autism
For autistic adults 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 group-based activities difficult.
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.
Do not provide facilitated communication for autistic adults.

## Psychosocial interventions focused on life skills
For autistic adults 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.
For autistic adults 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.
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.
For autistic adults 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 autistic adults.
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.
For autistic adults 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.
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.
For autistic adults without a learning disability or with a mild learning disability, who are having difficulty obtaining or maintaining employment, consider an individual supported employment programme.
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 autistic person 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 features of autism
Do not use anticonvulsants for the management of core features of autism in adults.
Do not use chelation for the management of core features of autism in adults.
Do not use the following interventions for the management of core features 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).
Do not use drugs specifically designed to improve cognitive functioning (for example, cholinesterase inhibitors) for the management of core features of autism or routinely for associated cognitive or behavioural problems in adults.
Do not use oxytocin for the management of core features of autism in adults.
Do not use secretin for the management of core features of autism in adults.
Do not use testosterone regulation for the management of core features of autism in adults.
Do not use hyperbaric oxygen therapy for the management of core features of autism in adults.
Do not use antipsychotic medication for the management of core features of autism in adults.
Do not use antidepressant medication for the routine management of core features of autism in adults.

# Interventions for behaviour that challenges
Before initiating other interventions for behaviour that challenges, 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)
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).
First offer a psychosocial intervention for the behaviour that challenges if no coexisting mental or physical disorder, or problem related to the physical or social environment, has been identified as triggering or maintaining behaviour that challenges.
When deciding on the nature and content of a psychosocial intervention to address behaviour that challenges, 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)
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.
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
the capacity of staff and families, partners or carers to provide support
the preferences of the autistic person and, where appropriate, their family, partner or carer(s)
past history of care and support.

## Psychosocial interventions for behaviour that challenges
Psychosocial interventions for behaviour that challenges should be based on behavioural principles and informed by a functional analysis of behaviour (see recommendation 1.5.3).
Psychosocial interventions for behaviour that challenges 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 behaviour that challenges
Consider antipsychotic medication in conjunction with a psychosocial intervention for behaviour that challenges 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 medication after 34 weeks and discontinue it if there is no indication of a clinically important response at 6 weeks.In June 2012 this was an off-label use of antipsychotic medication. See NICE's information on prescribing medicines.

## Pharmacological interventions for behaviour that challenges
Consider antipsychotic medication alone for behaviour that challenges when psychosocial or other interventions could not be delivered because of the severity of the behaviour that challenges. Antipsychotic medication should be prescribed by a specialist and quality of life outcomes monitored carefully. Review the effects of the medication after 34 weeks and discontinue it if there is no indication of a clinically important response at 6 weeks.In June 2012 this was an off-label use of antipsychotic medication. See NICE's information on prescribing medicines.
Do not routinely use anticonvulsants for the management of behaviour that challenges in autistic adults.

# Interventions for coexisting mental disorders
Staff delivering interventions for coexisting mental disorders to autistic adults should:
have an understanding of the core features 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 autistic people.

## Psychosocial interventions for coexisting mental disorders
For autistic adults and coexisting mental disorders, offer psychosocial interventions informed by existing NICE guidance for the specific disorder.
Adaptations to the method of delivery of cognitive and behavioural interventions for autistic adults and coexisting common mental disorders should include:
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 autistic person 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
For autistic adults and coexisting mental disorders, offer pharmacological interventions informed by existing NICE guidance for the specific disorder.

# Assessment and interventions for families, partners and carers
Offer families, partners and carers of autistic adults an assessment of their own needs (see the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of families, partners and carers).
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 autistic people. See the NICE guideline on supporting adult carers.
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).

# Organisation and delivery of care

## Developing local care pathways
Local care pathways should be developed to promote implementation of key principles of good care. Pathways should be:
negotiable, workable and understandable for autistic adults, 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 autistic adults and their families, partners and carers
integrated so that there are no barriers to movement between different levels of the pathway
-utcome focused (including measures of quality, service user experience and harm).
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 features 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.
The autism strategy group should develop local care pathways that promote access to services for all autistic adults, including:
people with coexisting physical and mental disorders (including substance misuse)
women
people with learning disabilities
-lder people
people from black and minority ethnic groups
transgender people
homeless people
people from the traveller community
people in the criminal justice system
autistic parents.
When providing information about local care pathways to autistic adults and their families, partners and carers, all professionals should:
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.
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 autistic adults in their choice of interventions.
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 autistic adults
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.
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.

## Improving access to care
There should be a single point of referral (including self-referral) to specialist services for autistic adults.
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.
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 autistic adults
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).

## Residential care
If residential care is needed for autistic adults 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 autistic person and their family, partner or carer(s) for the development and maintenance of interpersonal and community living skills.
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.
Residential care environments should have:
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 autistic person can be alone (for example, if they are over-stimulated).
Residential care staff should:
understand the principles and attitudes underpinning the effective delivery of residential care for autistic adults
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 autistic adults
be consistent and predictable, but with some flexibility to allow change and choice
be committed to involving families, partners and carers.

# Terms used in this guideline
This section defines terms that have been used in a particular way for this guideline.

## 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 autistic people, including those with behaviour that challenges.

## Behaviour that challenges
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.

## 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.

## 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.

## 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 an autistic person 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 an autistic person.

## Informant
A family member, partner, carer or other third party known to the autistic person who is able to provide information about the person's features 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=5069, moderate=3549 and severe=2034. 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. Reinforcement may be by the autistic person or those working with or caring for them.# Recommendations for research
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 recommendations for research is detailed in the full guideline.

# Facilitated self-help for anxiety and depression in autistic adults
What is the clinical and cost effectiveness of facilitated self-help for the treatment of mild anxiety and depressive disorders in autistic adults?

## Why this is important
Anxiety and depressive disorders commonly coexist in autistic people 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 features of autism. There is limited access and poor uptake of facilitated self-help by autistic people, largely due to limited availability but also because current systems for the delivery of such interventions are not adapted for use by autistic people. 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.

# The structure and organisation of specialist teams
What structure and organisation of specialist autism teams are associated with improvements in care for autistic people?

## Why this is important
The Department of Health's autism strategy (2010) proposes the introduction of a range of specialist services for autistic people; 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 autistic people 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 autistic people. 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 autistic people in terms of access to services and effective coordination of care.

# Augmentative communication devices for autistic adults
What is the clinical and cost effectiveness of augmentative communication devices for autistic adults?

## Why this is important
Many autistic people 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 features of autism and are likely to persist for most people given the life-long course of autism and the lack of effective interventions for these core features. 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 autistic adults.
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 autistic people (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.