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

1.1.1.

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.

1.1.2.

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.

1.1.3.

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.

1.1.4.

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.

1.1.5.

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.

1.1.6.

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.

1.1.7.

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.

1.1.8.

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.

1.1.9.

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.

1.1.10.

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.

1.1.11.

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

1.1.12.

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.

1.1.13.

In each area a specialist community-based multidisciplinary team for autistic adults (the specialist autism team) should be established. The membership should include:

• clinical psychologists
• nurses
• occupational therapists
• psychiatrists
• social workers
• speech and language therapists
• support staff (for example, staff supporting access to housing, educational and employment services, financial advice, and personal and community safety skills).

1.1.14.

The specialist autism team should have a key role in the delivery and coordination of:

• specialist diagnostic and assessment services
• specialist care and interventions
• advice and training to other health and social care professionals on the diagnosis, assessment, care and interventions for 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

1.1.15.

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).

1.1.16.

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).

1.1.17.

Give all families, partners and carer(s) (whether or not the person wants them to be involved in their care) verbal and written information about:

• autism and its management
• local support groups and services specifically for families, partners and carers
• their right to a carer’s assessment of their own physical and mental health needs, and how to access this (see the NICE guideline on supporting adult carers).

1.1.18.

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.

Principles for the effective assessment of autism

1.2.1.

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

1.2.2.

Consider assessment for possible autism when a person has:

• one or more of the following:

  –

  persistent difficulties in social interaction

  –

  persistent difficulties in social communication

  –

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

• one or more of the following:

  –

  problems in obtaining or sustaining employment or education

  –

  difficulties in initiating or sustaining social relationships

  –

  previous or current contact with mental health or learning disability services

  –

  a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.

1.2.3.

For adults with possible autism who do not have a moderate or severe learning disability, consider using the Autism-Spectrum Quotient – 10 items (AQ-10). (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. [amended 2021]

1.2.4.

For adults with possible autism who have a moderate or severe learning disability, consider a brief assessment to ascertain whether the following behaviours are present (if necessary using information from a family member, partner or carer):

• difficulties in reciprocal social interaction including:

  –

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

  –

  interaction to fulfil needs only

  –

  interaction that is naive or one-sided

• lack of responsiveness to others
• little or no change in behaviour in response to different social situations
• limited social demonstration of empathy
• rigid routines and resistance to change
• marked repetitive activities (for example, rocking and hand or finger flapping), especially when under stress or expressing emotion.

If two or more of the above categories of behaviour are present, offer a comprehensive assessment for autism.

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

1.2.5.

A comprehensive assessment should:

• be undertaken by professionals who are trained and competent
• be team-based and draw on a range of professions and skills
• where possible involve a family member, partner, carer or other informant or use documentary evidence (such as school reports) of current and past behaviour and early development.

1.2.6.

At the beginning of a comprehensive assessment, discuss with the person the purpose of the assessment and how the outcome of the assessment will be fed back to them. Feedback should be individualised, and consider involving a family member, partner, carer or advocate, where appropriate, to support the person and help explain the feedback.

1.2.7.

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.

1.2.8.

To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:

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

  –

  the Adult Asperger Assessment (AAA; includes the Autism-Spectrum Quotient [AQ] and the Empathy Quotient [EQ])

  –

  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.

1.2.9.

To organise and structure the process of a more complex assessment, consider using a formal assessment tool, such as the Diagnostic Interview for Social and Communication Disorders (DISCO), the ADOS-G or the ADI-R.

1.2.10.

During a comprehensive assessment, take into account and assess for possible differential diagnoses and coexisting disorders or conditions, such as:

• other neurodevelopmental conditions (use formal assessment tools for learning disabilities)
• mental disorders (for example, schizophrenia, depression or other mood disorders, and anxiety disorders, in particular, social anxiety disorder and obsessive–compulsive disorder)
• neurological disorders (for example, epilepsy)
• physical disorders
• communication difficulties (for example, speech and language problems, and selective mutism)
• hyper- and/or hypo-sensory sensitivities.

1.2.11.

Do not use biological tests, genetic tests or neuroimaging for diagnostic purposes routinely as part of a comprehensive assessment.

1.2.12.

During a comprehensive assessment, assess the following risks:

• self-harm (in particular in people with depression or a moderate or severe learning disability)
• rapid escalation of problems
• harm to others
• self-neglect
• breakdown of family or residential support
• exploitation or abuse by others.

Develop a risk management plan if needed.

1.2.13.

Develop a care plan based on the comprehensive assessment, incorporating the risk management plan and including any particular needs (such as adaptations to the social or physical environment), and also taking into account the needs of the family, partner or carer(s).

1.2.14.

Provide a ‘health passport’ (for example, a laminated card) for 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.

1.2.15.

As part of a comprehensive assessment consider developing a 24-hour crisis management plan, where necessary in conjunction with specialist mental health services, which should detail:

• the likely trigger(s) for a crisis
• the nature and speed of the reaction to any trigger(s), including details about the way in which autism may impact on a person’s behaviour leading up to and during a crisis
• the role of the specialist team and other services (including outreach and out-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.

1.2.16.

Consider obtaining a second opinion (including referral to another specialist autism team if necessary), if there is uncertainty about the diagnosis or if any of the following apply after diagnostic assessment:

• 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.

1.2.17.

On an individual basis, and using information from the comprehensive assessment and physical examination, and clinical judgement, consider further investigations, including:

• genetic tests, as recommended by the regional genetics centre, if there are specific dysmorphic features, congenital anomalies and/or evidence of a learning disability
• electroencephalography if there is suspicion of epilepsy
• hearing or sight tests, if there is suspicion of hearing or visual impairment
• other medical tests depending on individual signs and symptoms (for example, sudden onset of 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).

1.2.18.

Offer all adults who have received a diagnosis of autism (irrespective of whether they need or have refused further care and support) a follow-up appointment to discuss the implications of the diagnosis, any concerns they have about the diagnosis, and any future care and support they may require.

Assessment of behaviour that challenges

1.2.19.

Assessment of behaviour that challenges should be integrated into a comprehensive assessment for autistic adults.

1.2.20.

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.

Psychosocial interventions for the core features of autism

1.4.1.

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.

1.4.2.

Social learning programmes to improve social interaction should typically include:

• modelling
• peer feedback (for group-based programmes) or individual feedback (for individually delivered programmes)
• discussion and decision-making
• explicit rules
• suggested strategies for dealing with socially difficult situations.

1.4.3.

Do not provide facilitated communication for autistic adults.

Psychosocial interventions focused on life skills

1.4.4.

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.

1.4.5.

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.

1.4.6.

A structured leisure activity programme should typically include:

• a focus on the interests and abilities of the participant(s)
• regular meetings for a valued leisure activity
• for group-based programmes, a facilitator with a broad understanding of autism to help integrate the participants
• the provision of structure and support.

1.4.7.

For 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.

1.4.8.

Anger management interventions should typically include:

• functional analysis of anger and anger-provoking situations
• coping-skills training and behaviour rehearsal
• relaxation training
• development of problem-solving skills.

1.4.9.

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.

1.4.10.

Anti-victimisation interventions should typically include:

• identifying and, where possible, modifying and developing decision-making skills in situations associated with abuse
• developing personal safety skills.

1.4.11.

For 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.

1.4.12.

An individual supported employment programme should typically include:

• help with writing CVs and job applications and preparing for interviews
• training for the identified work role and work-related behaviours
• carefully matching the 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

1.4.13.

Do not use anticonvulsants for the management of core features of autism in adults.

1.4.14.

Do not use chelation for the management of core features of autism in adults.

1.4.15.

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).

1.4.16.

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.

1.4.17.

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

1.4.18.

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

1.4.19.

Do not use testosterone regulation for the management of core features of autism in adults.

1.4.20.

Do not use hyperbaric oxygen therapy for the management of core features of autism in adults.

1.4.21.

Do not use antipsychotic medication for the management of core features of autism in adults.

1.4.22.

Do not use antidepressant medication for the routine management of core features of autism in adults.

Psychosocial interventions for behaviour that challenges

1.5.5.

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).

1.5.6.

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

1.5.7.

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

1.5.8.

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.

1.5.9.

Do not routinely use anticonvulsants for the management of behaviour that challenges in autistic adults.

Psychosocial interventions for coexisting mental disorders

1.6.2.

For autistic adults and coexisting mental disorders, offer psychosocial interventions informed by existing NICE guidance for the specific disorder.

1.6.3.

Adaptations to the method of delivery of cognitive and behavioural interventions for 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

1.6.4.

For autistic adults and coexisting mental disorders, offer pharmacological interventions informed by existing NICE guidance for the specific disorder.

Developing local care pathways

1.8.1.

Local care pathways should be developed to promote implementation of key principles of good care. Pathways should be:

• negotiable, workable and understandable for 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
• outcome focused (including measures of quality, service user experience and harm).

1.8.2.

Autism strategy groups should be responsible for developing, managing and evaluating local care pathways. The group should appoint a lead professional responsible for the local autism care pathway. The aims of the strategy group should include:

• 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.

1.8.3.

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
• older 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.

1.8.4.

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.

1.8.5.

The autism strategy group should design local care pathways that promote a range of evidence-based interventions at each step in the pathway and support autistic adults in their choice of interventions.

1.8.6.

The autism strategy group should design local care pathways that respond promptly and effectively to the changing needs of all populations served by the pathways. Pathways should have in place:

• clear and agreed goals for the services offered to 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.

1.8.7.

The autism strategy group should design local care pathways that provide an integrated programme of care across all care settings. Pathways should:

• minimise the need for transition between different services or providers
• allow services to be built around the pathway and not the pathway around the services
• establish clear links (including access and entry points) to other care pathways (including those for physical healthcare needs)
• have designated staff who are responsible for the coordination of people’s engagement with the pathway.

Improving access to care

1.8.8.

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

1.8.9.

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

• delivering assessment and interventions in a physical environment that is appropriate for people with hyper- and/or hypo-sensory sensitivities (see recommendation 1.1.8)
• changing the professional responsible for the person’s care if a supportive and caring relationship cannot be established.

1.8.10.

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

• ensuring systems (for example, care coordination or case management) are in place to provide for the overall coordination and continuity of care for 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

1.8.11.

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 wellsupported 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.

1.8.12.

Residential care environments should include activities that are:

• structured and purposeful
• designed to promote integration with the local community and use of local amenities
• clearly timetabled with daily, weekly and sequential programmes that promote choice and autonomy.

1.8.13.

Residential care environments should have:

• 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).

1.8.14.

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.

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.

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.

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.