This site is intended for UK healthcare professionals
Medscape UK Univadis Logo
Medscape UK Univadis Logo

Welcome to the new home for Guidelines

Clinical guideline summaries and expert articles for UK healthcare professionals all in one place.

Summary for primary care

Autism in Under 19s: Recognition, Referral and Diagnosis

NICE

This Guidelines summary covers recognising and diagnosing autism spectrum disorder in children and young people from birth up to 19 years. It also covers referral.

NICE has also produced a guideline on autism spectrum disorder in under 19s: support and management.

Local Pathway for Recognition, Referral and Diagnostic Assessment of Possible Autism

A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector.

The local autism strategy group should appoint a lead professional to be responsible for the local autism pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include:

  • improving early recognition of autism by raising awareness of the signs and symptoms of autism through multi-agency training (see tables 1 to 3, below)
  • making sure the relevant professionals (healthcare, social care, education and voluntary sector) are aware of the local autism pathway and how to access diagnostic services
  • supporting the smooth transition to adult services for young people going through the diagnostic pathway
  • ensuring data collection and audit of the pathway takes place

In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:

  • paediatrician and/or child and adolescent psychiatrist
  • speech and language therapist
  • clinical and/or educational psychologist

The autism team should either include or have regular access to the following professionals if they are not already in the team:

  • paediatrician or paediatric neurologist
  • child and adolescent psychiatrist
  • educational psychologist
  • clinical psychologist
  • occupational therapist

Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment. For example, a specialist health visitor or nurse, specialist teacher or social worker.

The autism team should have the skills and competencies to:

  • carry out an autism diagnostic assessment
  • communicate with children and young people with suspected or known autism, and with their parents and carers, and sensitively share the diagnosis with them

Autism team members should:

  • provide advice to professionals about whether to refer children and young people for autism diagnostic assessments
  • decide on the assessment needs of those referred or when referral to another service will be needed
  • carry out the autism diagnostic assessment
  • share the outcome of the autism diagnostic assessment with parents and carers, and with children and young people if appropriate
  • with parent or carer consent and, if appropriate, the consent of the child or young person, share information from the autism diagnostic assessment directly with relevant services, for example through a school visit by an autism team member
  • offer information to children, young people and parents and carers about appropriate services and support
  • provide a single point of referral for access to the autism team

The autism team should either have the skills (or have access to professionals that have the skills) needed to carry out an autism diagnostic assessment, for children and young people with special circumstances including:

  • coexisting conditions such as severe visual and hearing impairments, motor disorders including cerebral palsy, severe learning (intellectual) disabilities, complex language disorders or complex mental health disorders
  • looked-after children and young people

If young people present at the time of transition to adult services, the autism team should consider carrying out the autism diagnostic assessment jointly with the adult autism team, regardless of the young person’s intellectual ability.

Recognising Children and Young People with Possible Autism

Consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for individual signs and symptoms.

Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others.

When considering the possibility of autism and whether to refer a child or young person to the autism team, be critical about your professional competence and seek advice from a colleague if in doubt about the next step.

To help identify the signs and symptoms of possible autism, use tables 1 to 3 (see below). Do not rule out autism if the exact features described in the tables are not evident; they should be used for guidance, but do not include all possible manifestations of autism.

When considering the possibility of autism, be aware that:

  • signs and symptoms should be seen in the context of the child’s or young person’s overall development
  • signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
  • when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment
  • it is necessary to take account of cultural variation, but do not assume that language delay is accounted for because English is not the family’s first language or by early hearing difficulties
  • autism may be missed in children or young people with a learning (intellectual) disability
  • autism may be missed in children or young people who are verbally able
  • autism may be under-diagnosed in girls
  • important information about early development may not be readily available for some children and young people, for example looked-after children and those in the criminal justice system
  • signs and symptoms may not be accounted for by disruptive home experiences or parental or carer mental or physical illness

When considering the possibility of autism, ask about the child or young person’s use and understanding of their first language.

Do not rule out autism because of:

  • good eye contact, smiling and showing affection to family members
  • reported pretend play or normal language milestones
  • difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)
  • a previous assessment that concluded that there was no autism, if new information becomes available

Discuss developmental or behavioural concerns about a child or young person with parents or carers, and the child or young person themselves if appropriate. Discuss sensitively the possible causes, which may include autism, emphasising that there may be many explanations for the child’s or young person’s behaviour.

Be aware that if parents or carers or the child or young person themselves have not suspected a developmental or behavioural condition, raising the possibility may cause distress, and that:

  • it may take time for them to come to terms with the concern
  • they may not share the concern

Take time to listen to parents or carers and, if appropriate, the child or young person, to discuss concerns and agree any actions to follow including referral.

Referring Children and Young People to the Autism Team

Refer children younger than 3 years to the autism team if there is regression in language or social skills.

Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:

  • older than 3 years with regression in language
  • of any age with regression in motor skills

Consider referring children and young people to the autism team if you are concerned about possible autism on the basis of reported or observed signs and/or symptoms (see tables 1 to 3, below). Take account of:

  • the severity and duration of the signs and/or symptoms
  • the extent to which the signs and/or symptoms are present across different settings (for example, home and school)
  • the impact of the signs and/or symptoms on the child or young person and on their family
  • the level of parental or carer concern and, if appropriate, the concerns of the child or young person
  • factors associated with an increased prevalence of autism (see Box 1)
  • the likelihood of an alternative diagnosis.

Box 1: Factors Associated with an Increased Prevalence of Autism
  • A sibling with autism.
  • Birth defects associated with central nervous system malformation and/or dysfunction, including cerebral palsy.
  • Gestational age less than 35 weeks.
  • Parental schizophrenia-like psychosis or affective disorder.
  • Maternal use of sodium valproate in pregnancy.
  • A learning (intellectual) disability.
  • Attention deficit hyperactivity disorder.
  • Neonatal encephalopathy or epileptic encephalopathy, including infantile spasms.
  • Chromosomal disorders such as Down’s syndrome.
  • Genetic disorders such as fragile X.
  • Muscular dystrophy.
  • Neurofibromatosis.
  • Tuberous sclerosis.

If you have concerns about development or behaviour but are not sure whether the signs and/or symptoms suggest autism, consider:

  • consulting a member of the autism team who can provide advice to help you decide if a referral to the autism team is necessary
  • referring to another service. That service can then refer to the autism team if necessary

Be aware that tools to identify children and young people with an increased likelihood of autism may be useful in gathering information about signs and symptoms of autism in a structured way but are not essential and should not be used to make or rule out a diagnosis of autism. Also be aware that:

  • a positive score on tools to identify an increased likelihood of autism may support a decision to refer but can also be for reasons other than autism
  • a negative score does not rule out autism

When referring children and young people to the autism team, include in the referral letter the following information:

  • reported information from parents, carers and professionals about signs and/or symptoms of concern
  • your own observations of the signs and/or symptoms

When referring children and young people to the autism team, include in the referral letter the following information, if available:

  • antenatal and perinatal history
  • developmental milestones
  • factors associated with an increased prevalence of autism (see box 1, below)
  • relevant medical history and investigations
  • information from previous assessments

Explain to parents or carers and, if appropriate, the child or young person, what will happen on referral to the autism team or another service.

If you do not think concerns are sufficient to prompt a referral, consider a period of watchful waiting. If you remain concerned about autism, reconsider your referral decision.

If the parents or carers or if appropriate, the child or young person, prefer not to be referred to the autism team, consider a period of watchful waiting. If you remain concerned about autism, reconsider referral.

If a concern about possible autism has been raised but there are no signs, symptoms or other reasons to suspect autism, use professional judgment to decide what to do next.

Communicating the Results from the Autism Diagnostic Assessment

After the autism diagnostic assessment discuss the findings, including the profile, sensitively, in person and without delay with the parents or carers and, if appropriate, the child or young person. Explain the basis of conclusions even if the diagnosis of autism was not reached.

Use recognised good practice when sharing a diagnosis with parents, carers, children and young people.

For children and young people with a diagnosis of autism, discuss and share information with parents or carers and, if appropriate, the child or young person, to explain:

  • what autism is
  • how autism is likely to affect the child or young person’s development and function

Provide parents or carers and, if appropriate, the child or young person, with a written report of the autism diagnostic assessment. This should explain the findings of the assessment and the reasons for the conclusions drawn.

Share information, including the written report of the diagnostic assessment, with the GP.

With parental or carer consent and, if appropriate, the consent of the child or young person, share information with key professionals involved in the child’s or young person’s care, including those in education and social care.

With parental or carer consent and, if appropriate, the consent of the child or young person, make the profile available to professionals in education (for example, through a school visit by a member of the autism team) and, if appropriate, social care. This is so it can contribute to the child or young person’s individual education plan and needs-based management plan.

For children and young people with a diagnosis of autism, offer a follow-up appointment with an appropriate member of the autism team within 6 weeks of the end of the autism assessment for further discussion (for example about the conclusions of the assessment and the implications for the child or young person).

For children and young people with a diagnosis of autism, discuss with parents or carers the risk of autism occurring in siblings and future children.

Information and Support for Families and Carers

Provide individual information on support available locally for parents, carers, children and young people with autism, according to the family’s needs. This may include:

  • contact details for:
    • local and national support organisations (who may provide, for example, an opportunity to meet other families with experience of autism, or information about specific courses for parents and carers and/or young people)
    • organisations that can provide advice on welfare benefits
    • organisations that can provide information on educational support and social care
  • information to help prepare for the future, for example transition to adult services.

Signs and Symptoms of Possible Autism

Using Tables 1 to 3

  • The signs and symptoms in tables 1 to 3 are a combination of delay in expected features of development and the presence of unusual features, and are intended to alert professionals to the possibility of autism in a child or young person about whom concerns have been raised. They are not intended to be used alone, but to help professionals recognise a pattern of impairments in reciprocal social and communication skills, together with unusual restricted and repetitive behaviours.

Table 1: Signs and Symptoms of Possible Autism in Preschool Children (or Equivalent Mental Age)

SOCIAL INTERACTION AND RECIPROCAL COMMUNICATION BEHAVIOURS

Spoken language

  • Language delay (in babble or words, for example less than ten words by the age of 2 years).
  • Regression in or loss of use of speech.
  • Spoken language (if present) may include unusual:
    • non-speech like vocalisations
    • odd or flat intonation
    • frequent repetition of set words and phrases (‘echolalia’)
    • reference to self by name or ‘you’ or ‘she/he’ beyond 3 years
  • Reduced and/or infrequent use of language for communication, for example use of single words although able to speak in sentences.

Responding to others

  • Absent or delayed response to name being called, despite normal hearing.
  • Reduced or absent responsive social smiling.
  • Reduced or absent responsiveness to other people’s facial expressions or feelings.
  • Unusually negative response to the requests of others (demand avoidant behaviour).
  • Rejection of cuddles initiated by parent or carer, although may initiate cuddles themselves.

Interacting with others

  • Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space.
  • Reduced or absent social interest in others, including children of his/her own age—may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive.
  • Reduced or absent imitation of others’ actions.
  • Reduced or absent initiation of social play with others, plays alone.
  • Reduced or absent enjoyment of situations that most children like, for example, birthday parties.
  • Reduced or absent sharing of enjoyment.

Eye contact, pointing and other gestures

  • Reduced or absent use of gestures and facial expressions to communicate (although may place adult’s hand on objects).
  • Reduced and poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication.
  • Reduced or absent social use of eye contact, assuming adequate vision.
  • Reduced or absent joint attention shown by lack of:
    • gaze switching
    • following a point (looking where the other person points to—may look at hand)
    • using pointing at or showing objects to share interest.

Ideas and imagination

  • Reduced or absent imagination and variety of pretend play.

Unusual or restricted interests and/or rigid and repetitive behaviours

  • Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking.
  • Repetitive or stereotyped play, for example opening and closing doors.
  • Over-focused or unusual interests.
  • Excessive insistence on following own agenda.
  • Extremes of emotional reactivity to change or new situations, insistence on things being ‘the same’.
  • Over or under reaction to sensory stimuli, for example textures, sounds, smells.
  • Excessive reaction to taste, smell, texture or appearance of food or extreme food fads.

Table 2: Signs and Symptoms of Possible Autism in Primary School Children (Aged 5 to 11 Years or Equivalent Mental Age)

SOCIAL INTERACTION AND RECIPROCAL COMMUNICATION BEHAVIOURS

Spoken language

  • Spoken language may be unusual in several ways:
    • very limited use
    • monotonous tone
    • repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest
    • talking ‘at’ others rather than sharing a two-way conversation
    • responses to others can seem rude or inappropriate.

Responding to others

  • Reduced or absent response to other people’s facial expression or feelings.
  • Reduced or delayed response to name being called, despite normal hearing.
  • Subtle difficulties in understanding other’s intentions; may take things literally and misunderstand sarcasm or metaphor.
  • Unusually negative response to the requests of others (demand avoidant behaviour).

Interacting with others

  • Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space.
  • Reduced or absent social interest in people, including children of his/her own age—may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive.
  • Reduced or absent greeting and farewell behaviours.
  • Reduced or absent awareness of socially expected behaviour.
  • Reduced or absent ability to share in the social play or ideas of others, plays alone.
  • Unable to adapt style of communication to social situations, for example may be overly formal or inappropriately familiar.
  • Reduced or absent enjoyment of situations that most children like.

Eye contact, pointing and other gestures

  • Reduced and poorly integrated gestures, facial expressions and body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication.
  • Reduced or absent social use of eye contact, assuming adequate vision.
  • Reduced or absent joint attention shown by lack of:
    • gaze switching
    • following a point (looking where the other person points to—may look at hand)
    • using pointing at or showing objects to share interest.

Ideas and imagination

  • Reduced or absent flexible imaginative play or creativity, although scenes seen on visual media (for example, television) may be re-enacted.
  • Makes comments without awareness of social niceties or hierarchies.

Unusual or restricted interests and/or rigid and repetitive behaviours

  • Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking.
  • Play repetitive and oriented towards objects rather than people.
  • Over-focused or unusual interests.
  • Rigid expectation that other children should adhere to rules of play.
  • Excessive insistence on following own agenda.
  • Extremes of emotional reactivity that are excessive for the circumstances.
  • Strong preferences for familiar routines and things being ‘just right’.
  • Dislike of change, which often leads to anxiety or other forms of distress (including aggression).
  • Over or under reaction to sensory stimuli, for example textures, sounds, smells.
  • Excessive reaction to taste, smell, texture or appearance of food or extreme food fads.

Other factors that may support a concern about autism

  • Unusual profile of skills or deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age).
  • Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

Table 3: Signs and Symptoms of Possible Autism in Secondary School Children (Older than 11 Years or Equivalent Mental Age)

SOCIAL INTERACTION AND RECIPROCAL COMMUNICATION BEHAVIOURS

Spoken language

  • Spoken language may be unusual in several ways:
    • very limited use
    • monotonous tone
    • repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest
    • talking ‘at’ others rather than sharing a two-way conversation
    • responses to others can seem rude or inappropriate.

Interacting with others

  • Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space.
  • Long-standing difficulties in reciprocal social communication and interaction: few close friends or reciprocal relationships.
  • Reduced or absent understanding of friendship; often an unsuccessful desire to have friends (although may find it easier with adults or younger children).
  • Social isolation and apparent preference for aloneness.
  • Reduced or absent greeting and farewell behaviours.
  • Lack of awareness and understanding of socially expected behaviour.
  • Problems losing at games, turn-taking and understanding ‘changing the rules’.
  • May appear unaware or uninterested in what other young people his or her age are interested in.
  • Unable to adapt style of communication to social situations, for example may be overly formal or inappropriately familiar.
  • Subtle difficulties in understanding other’s intentions; may take things literally and misunderstand sarcasm or metaphor.
  • Makes comments without awareness of social niceties or hierarchies.
  • Unusually negative response to the requests of others (demand avoidant behaviour).

Eye contact, pointing and other gestures

  • Poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) assuming adequate vision, and spoken language used in social communication.

Ideas and imagination

  • History of a lack of flexible social imaginative play and creativity, although scenes seen on visual media (for example, television) may be re-enacted.

Unusual or restricted interests and/or rigid and repetitive behaviours

  • Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking.
  • Preference for highly specific interests or hobbies.
  • A strong adherence to rules or fairness that leads to argument.
  • Highly repetitive behaviours or rituals that negatively affect the young person’s daily activities.
  • Excessive emotional distress at what seems trivial to others, for example change in routine.
  • Dislike of change, which often leads to anxiety or other forms of distress including aggression.
  • Over or under reaction to sensory stimuli, for example textures, sounds, smells.
  • Excessive reaction to taste, smell, texture or appearance of food and/or extreme food fads.

Other factors that may support a concern about autism

  • Unusual profile of skills and deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age).
  • Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

References

Related to this Summary

UP NEXT

All material on this website is protected by copyright, Copyright © 1994-2023 by WebMD LLC. This website also contains material copyrighted by 3rd parties.