Recognition, referral, diagnosis, and management of adults with autism: summary of NICE guidance

General principles

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

• The nature, development, and course of autism

• The impact on personal, social, educational, and occupational functioning

• The impact of the social and physical environment.

[Based on the experience and opinion of the Guideline Development Group (GDG) and on the evidence reviewed in the NICE guidance on improving the experience of care for people who use adult NHS mental health services.10 ]

Assessment for 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.

[Based on the experience and opinion of the GDG]

For adults with possible autism who do not have a moderate or severe learning disability, consider using the Autism Spectrum Quotient, 10 items (the AQ-10; figure⇓).11 (If a person has reading difficulties, read out the AQ-10.) If a person scores above 6 on the AQ-10, or clinical judgment suggests autism (taking into account any history provided by an informant), offer a comprehensive assessment for autism. [Based on low quality studies of the accuracy of diagnostic tests]

During a comprehensive assessment, inquire about and assess the following:

• Core autism signs and symptoms (difficulties in social interaction and communication and the presence of stereotypic behaviour, resistance to change or restricted interests) that were present in childhood and have continued into adulthood

• Early developmental history, where possible

• Behavioural problems

• Functioning at home, in education, or in employment

• Past and current physical and mental disorders (for example, schizophrenia, depression, or other mood disorders; and anxiety disorders—in particular, social anxiety disorder and obsessive compulsive disorder)

• Other neurodevelopmental conditions

• Neurological disorders (for example, epilepsy)

• Communication difficulties (for example, speech and language problems, and selective mutism)

• Hypersensory and/or hyposensory sensitivities and attention to detail.

Carry out direct observation of core autism signs and symptoms especially in social situations. [Based on the experience and opinion of the GDG]

Autism Spectrum Quotient—10 items (AQ-10): a quick referral guide for adults with suspected autism who do not have a learning disability

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Assessment of challenging behaviour

When assessing challenging behaviour, do a functional analysis (see “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.

[Based on the experience and opinion of the GDG]

Interventions for autism

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. [Based on low quality evidence from quasi-experimental parallel group controlled trials and an economic model]

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.

[Based on low quality evidence from quasi-experimental parallel group controlled trials]

For the management of core symptoms of autism in adults, do not use anticonvulsants, chelation, drugs specifically designed to improve cognitive functioning (for example, cholinesterase inhibitors), oxytocin, secretin, drugs for testosterone regulation, hyperbaric oxygen therapy, antipsychotic medication, or antidepressant medication. [Based on low to moderate quality evidence from randomised controlled trials and observational studies, and the experience and opinion of the GDG]

Interventions for challenging behaviour

When deciding on the nature and content of a psychosocial intervention for challenging behaviour, use a functional analysis. The functional analysis should facilitate the targeting of interventions by:

• Providing information, from a range of environments, on factors that seem to trigger the challenging behaviour; and on the consequences of the behaviour (that is, the reinforcement received as a result of their behaviour)

• Identifying trends in the occurrence of challenging behaviour, factors that may be evoking that behaviour, and the needs that the person is trying to meet by behaving in that manner.

[Based on the experience and opinion of the GDG]

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.

[Based on the experience and opinion of the GDG]

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 three to four weeks, and discontinue it if there is no indication of a clinically important response at six weeks. [Based on low quality evidence from randomised controlled trials]

Support for families 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. [Based on the experience and opinion of the GDG]

Offer information, advice, training, and support to families, partners, and carers if they need help with the personal, social, or emotional care of the person with autism; or if they are involved in supporting the delivery of an intervention (in collaboration with professionals). [Based on the experience and opinion of the GDG]