Quality statement 1: Diagnostic assessment by an autism team

Quality statement

People with possible autism who are referred to an autism team for a diagnostic assessment have the diagnostic assessment started within 3 months of their referral.

Rationale

There are several different routes by which someone with possible autism can be referred to an autism team for a diagnostic assessment. It is important that the assessment is conducted as soon as possible so that appropriate health and social care interventions, advice and support can be offered.

Quality measures

Structure

Evidence of local arrangements to ensure that people with possible autism referred for a diagnostic assessment by an autism team have the assessment started within 3 months of their referral.

Data source: Local data collection.

Process

Proportion of people with possible autism referred to an autism team for a diagnostic assessment who have the assessment started within 3 months of their referral.

Numerator – the number of people in the denominator who have a diagnostic assessment started within 3 months of referral to the autism team.

Denominator – the number of people with possible autism referred to an autism team for a diagnostic assessment.

Data source: Local data collection. NICE clinical audit support tool: Autism: recognition, referral and diagnosis of children and young people on the autism spectrum, criterion 1 states that autism diagnostic assessments should start within 3 months of the referral to the autism team.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers ensure that they are part of a transparent diagnostic pathway for autism, and that people with possible autism who are referred to an autism team for a diagnostic assessment have the assessment started within 3 months of their referral.

Health and social care practitioners working within an autism team ensure that people with possible autism who are referred for a diagnostic assessment have the assessment started within 3 months of their referral.

Commissioners should work with local health, social care and education partners to commission an autism diagnostic pathway that includes provisions for people referred for a diagnostic assessment by an autism team to have the assessment started within 3 months of their referral.

What the quality statement means for service users and carers

People who are referred for an assessment because they may have autism are seen by a specialist autism team and have their assessment started within 3 months.

Source guidance

  • Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (NICE clinical guideline 128), recommendation 1.5.1

  • Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142), recommendation 1.2.5

Definitions of terms used in this quality statement

Autism team

The team conducting the assessment for children, young people or adults should be a specialist integrated autism team with age-appropriate expertise, and should be part of the local autism diagnostic pathway (as required by the Autism Act 2009).

Children and young people

The core staff of the autism team for children and young people should include:

  • paediatricians and/or child and adolescent psychiatrists

  • speech and language therapists

  • clinical and/or educational psychologists.

The autism team should either include or have regular access to:

  • paediatricians or paediatric neurologists

  • child and adolescent psychiatrists

  • clinical and educational psychologists

  • occupational therapists

  • other professionals who may assist with the assessment, for example specialist health visitors or nurses, specialist teachers or social workers.

[Adapted from Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (NICE clinical guideline 128), recommendations 1.1.3 and 1.1.4]

Adults

A local adult autism team should include:

  • clinical psychologists

  • primary care services

  • nurses

  • occupational therapists

  • psychiatrists

  • social workers

  • speech and language therapists

  • support staff (for example, to support access to housing, educational and employment services, financial advice, and personal and community safety skills).

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (clinical guideline 142), recommendation 1.1.13]

Diagnostic assessment

This definition describes the autism diagnostic assessment for people who the autism team decide need an assessment. Some people who are referred for assessment will not receive a diagnostic assessment if the team's initial review of the referral suggests that the person does not have autism. For these people the autism team will either refer the person to another service and/or inform the practitioner who made the initial referral.

Children and young people

The following should be included in every autism diagnostic assessment for children and young people:

  • Detailed questions about parents or carers' concerns and, if appropriate, the child or young person's concerns.

  • Details of the child or young person's experiences of home life, education and social care.

  • A developmental history, focusing on developmental and behavioural features consistent with the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) criteria (consider using an autism-specific tool to gather this information).

  • Assessment (by interacting with and observing the child or young person) of social and communication skills and repetitive and stereotyped behaviours, including sensory sensitivities, focusing on features consistent with the ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information).

  • A medical history, including prenatal, perinatal and family history, and past and current health conditions.

  • A physical examination.

  • Consideration of the differential diagnoses (see NICE clinical guideline 128, recommendation 1.5.7).

  • Systematic assessment for conditions that may coexist with autism (see NICE clinical guideline 128, recommendation 1.5.15).

  • Developing a profile of the child or young person's strengths, skills, impairments and needs, including: intellectual ability and learning style, academic skills, speech, language and communication, fine and gross motor skills, adaptive behaviour (including self-help skills), mental and emotional health (including self-esteem), physical health and nutrition, sensory sensitivities, and behaviour likely to affect day-to-day functioning and social participation. This profile can be used to create a personalised plan, taking into account family and educational context. The assessment findings should be communicated to the parent or carer and, if appropriate, the child or young person.

[Adapted from Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (NICE clinical guideline 128), recommendations 1.4.1–8, 1.5.5 and 1.5.8]

Adults

During a comprehensive diagnostic assessment, enquire about and assess:

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

  • early developmental history, if possible

  • behavioural problems

  • functioning at home and in the community (for example, in education or in employment)

  • past and current physical and mental health problems

  • other neurodevelopmental conditions

  • hyper- and hypo-sensory sensitivities.

Carry out direct observation of core autism signs and symptoms, especially in social situations. Include observation of risk behaviours and safeguarding issues.

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142), recommendations 1.2.5–7 and 1.2.12]

Equality and diversity considerations

If the local autism team does not have the expertise to carry out an assessment, or in complex situations, a person may need to be referred to the regional (national specialist) team.

If a person does not have access to a specialist autism team near their homes, and has difficulty travelling long distances (because of the financial cost or other reasons), support may be needed to help them access the service.