NICE Guidance on the Identification and Assessment of Adults on the Autism Spectrum

The following extracts are from "Autism in adults: diagnosis and management." (2012). London: NICE.

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 (see recommendation 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)76. (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:

  • core autism signs and symptoms (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 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])77
    • the Autism Diagnostic Interview - Revised (ADI-R)78
    • the Autism Diagnostic Observation Schedule - Generic (ADOS-G)79
    • the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)80
    • the Ritvo Autism Asperger Diagnostic Scale - Revised (RAADS-R)81
  • 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)82, 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
  • 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 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 crisisadvice 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 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 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 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 recommendation 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 addressed84. 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 recommendation
  • 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 intervention. 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.

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23 Aug 2021