NICE Guidance on the General Principles of Care for Adults on the Autism Spectrum

The following is an extract from "Autism in adults: diagnosis and management". (2012). London: NICE.

General Principles of Care

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

9.1.1.1 All staff working with adults with autism should:

work in partnership with adults with autism and, where appropriate, with their families, partners and carers
offer support and care respectfully
take time to build a trusting, supportive, empathic and non-judgemental relationship as an essential part of care.

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

nature, development and course of autism
impact on personal, social, educational and occupational functioning
impact of the social and physical environment.

9.1.1.3 All health and social care professionals providing care and support for adults with autism should have a broad understanding of the:

nature, development and course of autism
impact on personal, social, educational and occupational functioning
impact of and interaction with the social and physical environment
impact on and interaction with other coexisting mental and physical disorders and their management
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.

9.1.1.4 All health and social care professionals providing care and support for adults with autism should:

aim to foster the person's autonomy, promote active participation in decisions about care and support self-management
maintain continuity of individual relationships wherever possible
ensure that comprehensive information about the nature of, and interventions and services for, their difficulties is available in an appropriate language or format including various visual, verbal and aural, easy-read, and different colour and font formats)
onsider whether the person may benefit from access to a trained advocate.

9.1.1.5 All health and social care professionals providing care and support for adults with autism and their families, partners and carers should:

ensure that they are easily identifiable (for example, by producing or wearing appropriate identification) and approachable
clearly communicate their role and function
address the person using the name and title they prefer
clearly explain any clinical language and check that the person with autism understands what is being said
take into account communication needs, including those arising from a learning disability, sight or hearing problems or language difficulties, and provide communication aids or independent interpreters (someone who does not have a personal relationship with the person with autism) if required.

9.1.1.6 All health and social care professionals providing care and support for adults with autism and their families, partners and carers should ensure that they are:

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.

9.1.1.7 Encourage adults with autism to participate in self-help or support groups or access one-to-one support, and provide support so that they can attend meetings and engage in the activities.

9.1.1.8 In all settings, take into account the physical environment in which adults with autism are assessed, supported and cared for, including any factors that may trigger challenging behaviour. If necessary make adjustments or adaptations to the:

amount of personal space given (at least an arm's length)
setting using visual supports (for example, use labels with words or symbols to provide visual cues about expected behaviour)
colour of walls and furnishings (avoid patterns and use low-arousal colours such as cream)
lighting (reduce fluorescent lighting, use blackout curtains or advise use of dark glasses or increase natural light)
noise levels (reduce external sounds or advise use of earplugs or ear defenders).

Where it is not possible to adjust or adapt the environment, consider varying the duration or nature of any assessment or intervention (including taking regular breaks) to limit the negative impact of the environment.

9.1.1.9 All health and social care professionals providing care and support for adults with autism should:

be aware of under-reporting and under-recognition of physical disorders in people with autism
be vigilant for unusual likes and dislikes about food and/or lack of physical activity
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.

9.1.1.10 All staff working with adults with autism should be sensitive to issues of sexuality, including asexuality and the need to develop personal and sexual relationships. In particular, be aware that problems in social interaction and communication may lead to the person with autism misunderstanding another person's behaviour or to their possible exploitation by others.

9.1.1.11 Ensure that adults with autism who have caring responsibilities receive support to access the full range of mental and physical health and social care services, including:

specific information, advice and support to parents about their parenting role, including parent training if needed, by professionals experienced in the care of adults and children with autism
social support, such as childcare, to enable them to attend appointments, groups and therapy sessions, and to access education and employment.

Structures for the organisation and delivery of care and interventions

9.1.1.12 In order to effectively provide care and support for adults with autism, 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 people with autism and their families, partners and carers.

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

clinical psychologists
nurses
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).

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

specialist diagnostic and assessment services
specialist care and interventions
advice and training to other health and social care professionals on the diagnosis, assessment, care and interventions for adults with autism (as not all may be in the care of a specialist team)
support in accessing, and maintaining contact with, housing, educational and employment servicess
upport 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

9.1.1.15 Discuss with adults with autism if and how they want their families, partners or carers to be involved in their care. During discussions, take into account any implications of the Mental Capacity Act (HMSO, 2005) and any communication needs the person may have (see recommendation 9.1.1.5).

9.1.1.16 If the person with autism wants their family, partner or carer(s) to be involved, encourage this involvement and:

negotiate between the person with autism and their family, partner or carer(s) about confidentiality and sharing of information on an ongoing basis
explain how families, partners and carers can help support the person with autism and help with care plans
make sure that no services are withdrawn because of involvement of the family, partner or carer(s), unless this has been clearly agreed with both the person with autism and their family, partner or carer(s).

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

autism and its management
local support groups and services specifically for families, partners and carers
● their right to a formal carer's assessment of their own physical and mental health needs, and how to access this.

9.1.1.18 If a person with autism does not want their family, partners or carer(s) to be involved in their care:

give the family, partner or carer(s) verbal and written information about who they can contact if they are concerned about the person's care
bear in mind that people with autism may be ambivalent or negative towards their family or partner. This may be for many different reasons, including a coexisting mental disorder or prior experience of violence or abuse.

Related Publications

National Institute for Health and Clinical Excellence (2012) Autism in adults: diagnosis and management. London: National Institute for Health and Clinical Excellence Read Full (New Window)

Quick link:: https://informationautism.org/nice-guidance-adults-general-principles-care

Updated: 23 Aug 2021

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