Autism Spectrum Disorder in Adults: Diagnosis and Management

Overview

This new Guidelines summary covers recommendations from NICE’s guideline on autism spectrum disorder in adults (updated in June 2021) on identifying, assessing, and managing adults with autism spectrum disorder, including Asperger’s syndrome and atypical autism. For a complete set of recommendations, refer to the full guideline.

This summary is intended for use by primary healthcare professionals, and therefore only contains recommendations related to this setting. For recommendations on interventions for coexisting mental disorders, assessment and interventions for families and carers, and organisation of delivery of care, refer to the full guideline.

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
  • 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 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
  • offer advice about the beneficial effects of a healthy diet and exercise, taking into account any hyper- and/or hypo-sensory sensitivities; if necessary, support referral to a GP or dietician.
• 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.

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. 
• 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.

For recommendations on structures for the organisation and delivery of care, refer to the full guideline.

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 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). (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 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
  • other 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 [AQ] and the Empathy Quotient [EQ])
    • 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:
  • 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 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 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
  • other 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 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
  • 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.

For recommendations on psychosocial interventions focused on life skills, refer to the full guideline.

Biomedical (Pharmacological, Physical and Dietary) Interventions and the Core Features of Autism

• Do not use the 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 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)
• 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.
• 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 3–4 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 3–4 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 autistic adults.

For recommendations on general principles of care, interventions for coexisting mental disorders, assessment and interventions for families and carers, and organisation and delivery of care, refer to the full guideline.