Recognising possible autism in children and young people

Recognising possible autism in children and
young people

NICE Pathways bring together all NICE guidance, quality standards and other NICE
information on a specific topic.
NICE Pathways are interactive and designed to be used online. They are updated
regularly as new NICE guidance is published. To view the latest version of this pathway
see:
http://pathways.nice.org.uk/pathways/autism

Pathway last updated: 26 January 2016

This document contains a single pathway diagram and uses numbering to link the
boxes to the associated recommendations.

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Recognising possible autism in children and young people NICE Pathways

Autism pathway Page 2 of 16

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Recognising possible autism in children and young people NICE Pathways

1 Possible autism in a child or young person

No additional information

2 Concerns about development or behaviour

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.

NICE has produced a pathway on challenging behaviour and learning disabilities.

Resources

The following implementation tool is relevant to this part of the pathway.

Autism in children and young people: clinical case scenarios

3 Signs and symptoms in children 0–4 years old or equivalent mental
age

Use the list below to help identify the signs and symptoms of possible autism in preschool
children (0–4 years or equivalent mental age). Do not rule out autism if the exact features
described below are not evident; they should be used for guidance, but do not include all
possible manifestations of autism.

The signs and symptoms 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.

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Recognising possible autism in children and young people NICE Pathways

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).

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Recognising possible autism in children and young people NICE Pathways

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.

Resources

The following implementation tools are relevant to this part of the pathway.

Autism in children and young people: signs and symptoms tables

Autism in children and young people: clinical case scenarios

4 Signs and symptoms in children 5–11 years old or equivalent mental
age

Use the list below to help identify the signs and symptoms of possible autism in primary school
children (aged 5–11 years or equivalent mental age). Do not rule out autism if the exact features
described below are not evident; they should be used for guidance, but do not include all
possible manifestations of autism.

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Recognising possible autism in children and young people NICE Pathways

The signs and symptoms 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.

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.

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Recognising possible autism in children and young people NICE Pathways

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.

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Recognising possible autism in children and young people NICE Pathways

Resources

The following implementation tools are relevant to this part of the pathway.
Autism in children and young people: signs and symptoms tables
Autism in children and young people: clinical case scenarios

5 Signs and symptoms in children older than 11 years or equivalent
mental age

Use the list below to help identify the signs and symptoms of possible autism in secondary
school children (older than 11 years or equivalent mental age). Do not rule out autism if the
exact features described below are not evident; they should be used for guidance, but do not
include all possible manifestations of autism.

The signs and symptoms 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.

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.

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Recognising possible autism in children and young people NICE Pathways

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.

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Recognising possible autism in children and young people NICE Pathways

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.

Resources

The following implementation tools are relevant to this part of the pathway.
Autism in children and young people: signs and symptoms tables
Autism in children and young people: clinical case scenarios

6 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's coping mechanisms 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 an 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.

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Recognising possible autism in children and young people NICE Pathways

Discuss developmental or behavioural concerns 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.

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.

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
a previous assessment that concluded that there was no autism, if new information
becomes available.
Ask about the child or young person's use and understanding of their first language.

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.

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 these tools may support a decision to refer but can also be for reasons
other than autism
a negative score does not rule out autism.

Resources

The following implementation tool is relevant to this part of the pathway.

Autism in children and young people: clinical case scenarios

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Recognising possible autism in children and young people NICE Pathways

7 Decide whether to refer to the autism team

See Autism / Referral of children and young people with possible autism

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Recognising possible autism in children and young people NICE Pathways

ADHD

Attention deficit hyperactivity disorder

Behavioural principles

Ideas, such as reinforcement and function of behaviour, that underlie behavioural therapies and
underpin many interventions teaching adaptive skills for community living for people with
autism, including those with challenging behaviour.

CAMHS

Child and adolescent mental health services.

Care pathways

Systems designed to improve the overall quality of healthcare by standardising the care process
and promoting organised efficient service user care based on best evidence to optimise service
user outcomes.

CBT

Cognitive behavioural therapy.

Challenging behaviour

A term used to describe behaviour that is a result of the interaction between individual and
environmental factors, and includes stereotypic behaviour (such as rocking or hand flapping),
anger, aggression, self-injury, and disruptive or destructive behaviour. Such behaviour is seen
as challenging when it affects the person's or other people's quality of life and or jeopardises
their safety.

Chelation

A procedure that involves using one or more substances (chelating agents) to remove materials
that are toxic, including heavy metals such as mercury, from the body.

CPA

Care programme approach. Page 13 of 16

Autism pathway

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Recognising possible autism in children and young people NICE Pathways

DCD

Developmental coordination disorder

DSM-IV

Diagnostic and Statistical Manual of Mental Disorders, 4th edition

Easy read

An accessible format for written communication designed for people with a learning disability. It
uses simple jargon-free language, short sentences and illustrations.

Facilitated communication

A therapeutic intervention whereby a facilitator supports the hand or arm of a person with
autism while using a keyboard or other devices with the aim of helping the person to develop
pointing skills and to communicate.

Functional analysis

A method for understanding the causes and consequences of behaviour and its relationship to
particular stimuli, and the function of the behaviour. The function of a particular behaviour can
be analysed by typically identifying (1) the precursor or trigger of the behaviour, (2) the
behaviour itself, and (3) the consequence of the behaviour.

Hyper- and/or hypo-sensory sensitivities

Being over-sensitive (hyper-sensitive) or under-sensitive (hypo-sensitive) to sound, light, colour,
smell or taste, which can cause anxiety or even pain in a person with autism.

Informant

A family member, partner, carer or other third party known to the person with autism who is able
to provide information about the person's symptoms and behaviour so that professionals can
have a fuller picture of the person's developmental history. Some assessment tools for autism
require information from informants.

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Recognising possible autism in children and young people NICE Pathways

ICD-10

International Statistical Classification of Diseases and Related Health Problems, 10th Revision

Learning disability

Lower intellectual ability (usually defined as an IQ of less than 70) that leads to problems in
learning, developing new skills, communication and carrying out daily activities. Learning
disability severities are defined by the following IQ scores: mild = 50–69, moderate = 35–49 and
severe = 20–34. A person with a mild to moderate learning disability may only need support in
certain areas. However, a person with a moderate to severe learning disability may have no
speech or limited communication, a significantly reduced ability to learn new skills and require
support with daily activities such as dressing and eating. Learning disabilities are different from
'learning difficulties', like dyslexia, which do not affect intellect. Learning disability is sometimes
also called 'intellectual disability'.

Modelling

A technique used in behavioural therapy that utilises video and other media. The service user
observes target behaviour on the video or computer screen, and repeats it.

ODD

Oppositional defiant disorder

OCD

Obsessive compulsive disorder

Reinforcement

A technique used in behavioural therapy to teach 'rules' of social engagement through providing
prompts for behaviour.

Sources

Autism in children and young people (2011) NICE guideline CG128

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Recognising possible autism in children and young people NICE Pathways

Your responsibility

The guidance in this pathway represents the view of NICE, which was arrived at after careful
consideration of the evidence available. Those working in the NHS, local authorities, the wider
public, voluntary and community sectors and the private sector should take it into account when
carrying out their professional, managerial or voluntary duties. Implementation of this guidance
is the responsibility of local commissioners and/or providers. Commissioners and providers are
reminded that it is their responsibility to implement the guidance, in their local context, in light of
their duties to avoid unlawful discrimination and to have regard to promoting equality of
opportunity. Nothing in this guidance should be interpreted in a way which would be inconsistent
with compliance with those duties.

Copyright

Copyright © National Institute for Health and Care Excellence 2016. All rights reserved. NICE
copyright material can be downloaded for private research and study, and may be reproduced
for educational and not-for-profit purposes. No reproduction by or for commercial organisations,
or for commercial purposes, is allowed without the written permission of NICE.

Contact NICE

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