Note from the National Guideline Clearinghouse (NGC): This guideline was developed by the National Collaborating Centre for Mental Health (NCCMH) on behalf of the National Institute for Health and Clinical Excellence (NICE). See the "Availability of Companion Documents" field for the full version of this guidance.
General Principles of Care
Principles for Working with Adults with Autism and Their Families, Partners and Carers
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.
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
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
- Potential discrepancy between intellectual functioning as measured by intelligence quotient (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 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
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.
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:
- 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.
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.
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.
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
- 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 general practitioner (GP) or dietician.
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.
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
In order to effectively provide care and support for adults with autism, the local autism multi-agency strategy group (see the NGC summary of Autism: recognition, referral and diagnosis of children and young people on the autism spectrum, NICE clinical guideline 128) 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.
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
- Occupational therapists
- 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 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
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.
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)
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
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
Identification and Assessment
Principles for the Effective Assessment of Autism
Staff who have responsibility for the identification or assessment of adults with autism should adapt these procedures, if necessary, to ensure their effective delivery, including modifications to the setting in which assessment is delivered and the duration and pacing of the assessment.
Identification and Initial Assessment of Possible Autism
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
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) (Allison, Auyeung, & Baron-Cohen, 2012). (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.
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:
- 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.
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]) (Baron-Cohen et al., 2005)
- The Autism Diagnostic Interview – Revised (ADI-R) (Lord et al., 1997)
- The Autism Diagnostic Observation Schedule – Generic (ADOS-G) (Lord et al., 2000)
- The Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI) (Gillberg et al., 2001)
- The Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R) (Ritvo et al., 2011)
- The following tools in particular for people with a learning disability:
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) (Wing et al., 2002), 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:
- 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
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
- 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 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.
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 needed to manage a crisis (see recommendations under "General Principles of Care" above
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 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 (see the NGC summary Autism: recognition, referral and diagnosis of children and young people on the autism spectrum, NICE clinical guideline 128).
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).
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
Assessment of challenging behaviour should be integrated into a comprehensive assessment for adults with autism.
When assessing challenging behaviour carry out a functional analysis (see recommendations under "Interventions for Challenging Behaviour" below) 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 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 (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
When discussing and deciding on care and interventions with adults with autism, take into account the:
- 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 recommendations under "General Principles of Care" above)
- 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
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 (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
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
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)
- 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 Symptoms of Autism
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 group-based activities difficult
Social learning programmes to improve social interaction should typically include:
- 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 adults with autism.
Psychosocial Interventions Focused on Life Skills
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.
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
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 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.
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 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.
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 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.
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
Do not use anticonvulsants for the management of core symptoms of autism in adults.
Do not use chelation for the management of core symptoms of autism in adults.
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)
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.
Do not use oxytocin for the management of core symptoms of autism in adults.
Do not use secretin for the management of core symptoms of autism in adults.
Do not use testosterone regulation for the management of core symptoms of autism in adults.
Do not use hyperbaric oxygen therapy for the management of core symptoms of autism in adults.
Do not use antipsychotic medication for the management of core symptoms of autism in adults.
Do not use antidepressant medication for the routine management of core symptoms of autism in adults.
Interventions for Challenging Behaviour
Before initiating other interventions for challenging behaviour, address any identified factors that may trigger or maintain the behaviour (see recommendations under "Identification and Assessment" above) 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 recommendations under "General Principles of Care" above)
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.
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 [reinforcement may be by the person with autism or those working with or caring for them])
- 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 person with autism and, where appropriate, their family, partner or carer(s)
- Past history of care and support
Psychosocial Interventions for Challenging Behaviour
Psychosocial interventions for challenging behaviour should be based on behavioural principles and informed by a functional analysis of behaviour (see recommendations above).
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
Consider antipsychotic medication* 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 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
Consider antipsychotic medication* 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.
Do not routinely use anticonvulsants for the management of challenging behaviour in adults with autism.
*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.
Interventions for Coexisting Mental Disorders
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
For adults with autism 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 adults with autism 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 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
For adults with autism 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 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
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.
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 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) (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
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 (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123)
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)
- 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
When providing information about local care pathways to adults with autism and their families, partners and carers, all professionals should:
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 (see the NGC summary of Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
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 (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
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 (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
Improving Access to Care
There should be a single point of referral (including self-referral) to specialist services for adults with autism.
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 recommendations under "General Principles of Care" above)
- 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 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) (see the NGC summary Common mental health disorders. Identification and pathways to care, NICE clinical guideline 123).
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.
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 recommendations under "General Principles of Care" above)
- Inside and outside spaces where the person with autism 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 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