Changes

April 2025 — minor update. QOF indicators removed in line with NHS England's 2025 Quality and Outcomes Framework.

Update

Goals

To support primary healthcare professionals to:

• Be aware when to suspect a diagnosis of autism in children and young people.
• Arrange referral to a local multidisciplinary team for confirmation of the diagnosis and management, where appropriate.
• Advise about sources of information and support for the child or young person, family members and/or carers.
• Provide support and management for behaviour that challenges, coexisting mental health problems, and sleep problems, in line with specialist advice where needed.
• Prescribe medication to help with behaviour that challenges and/or sleep problems, if needed, as part of a shared care agreement with the child or young person's specialist team.

Outcome measures

No outcome measures were found during the review of this topic.

Audit criteria

No audit criteria were found during the review of this topic.

QOF indicators

No QOF indicators were found during the review of this topic.

QIPP - Options for local implementation

No QIPP indicators were found during the review of this topic.

NICE Quality standards

NICE quality standards relating to people with autism which may be relevant to this CKS topic include:

• Quality statement 1. 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.
• Quality statement 2. People having a diagnostic assessment for autism are also assessed for coexisting physical health conditions and mental health problems.
• Quality statement 3. People with autism have a personalised plan that is developed and implemented in a partnership between them and their family and carers (if appropriate) and the autism team.
• Quality statement 4. People with autism are offered a named key worker to coordinate the care and support detailed in their personalised plan.
• Quality statement 5. People with autism have a documented discussion with a member of the autism team about opportunities to take part in age-appropriate psychosocial interventions to help address the core features of autism.
• Quality statement 6. People with autism are not prescribed medication to address the core features of autism.
• Quality statement 7. People with autism who develop behaviour that challenges are assessed for possible triggers, including physical health conditions, mental health problems, and environmental factors.
• Quality statement 8. People with autism and behaviour that challenges are not offered antipsychotic medication for the behaviour unless it is being considered because psychosocial or other interventions are insufficient or cannot be delivered because of the severity of the behaviour.

[NICE, 2014]

NICE quality standards relating to people with a learning disability and mental health problems which may be relevant to this CKS topic include:

• Quality statement 1. Young people and adults with a learning disability have an annual health check that includes a review of mental health problems.
• Quality statement 2. People with a learning disability who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
• Quality statement 3. People with a learning disability and a serious mental illness have a key worker to co-ordinate their care.
• Quality statement 4. People with a learning disability and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.
• Quality statement 5. People with a learning disability who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.

[NICE, 2017]

NICE quality standards relating to people with a learning disability and behaviour that challenges which may be relevant to this CKS topic include:

• Quality statement 2. People with a learning disability have an annual health check from their GP.
• Quality statement 3.  People with a learning disability and behaviour that challenges have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
• Quality statement 4. People with a learning disability and behaviour that challenges have a named lead practitioner.
• Quality statement 5. Families and carers of a person with a learning disability and behaviour that challenges are involved in developing the person's care and support plan, which includes how to prevent or respond to a crisis.
• Quality statement 6. Parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent-training programme.
• Quality statement 7. People with a learning disability and behaviour that challenges take part in personalised daily activities.
• Quality statement 8. People with a learning disability and behaviour that challenges have access to specialist behavioural support in the community.
• Quality statement 11. People with a learning disability and behaviour that challenges only receive antipsychotic medication as part of treatment that includes psychosocial interventions.
• Quality statement 12. People with a learning disability and behaviour that challenges have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.

[NICE, 2019]

NICE quality standards relating to people with a learning disability and decision making and mental capacity which may be relevant to this CKS topic include:

• Quality statement 1. People aged 16 and over who may lack capacity to make decisions are supported with decision making in a way that reflects their individual circumstances and meets their particular needs.
• Quality statement 2. People aged 16 and over at risk of losing capacity to make decisions, and those with fluctuating capacity, are given the opportunity to discuss advance care planning at each health and social care review.
• Quality statement 3. People aged 16 and over who are assessed as lacking capacity to make a particular decision at the time that decision needs to be made, have a clear record of the reasons why they lack capacity and the practicable steps taken to support them.
• Quality statement 4. People aged 16 and over who lack capacity to make a particular decision at the time that decision needs to be made have their wishes, feelings, values, and beliefs accounted for in best interests decisions.

[NICE, 2020]

What is it?

• The term autism describes a pattern of 'qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact'. It may be associated with 'a range of cognitive, learning, language, medical, emotional, and behavioural problems including a need for routine... and difficulty understanding other people, including their intentions, feelings and perspectives', and coexisting mental health problems [NICE, 2021].
  • Features of autism are usually present in early childhood and are persistent, but some may not become apparent until a change in the child or young person's life, such as transition to pre-school or primary school, or change in health or social care services [NICE, 2021]. Difficulties may present differently in a child or young person, depending on their age, language level, and cognitive ability [Hyman, 2020].
  • Difficulties are severe enough to affect personal, social, educational, occupational, or other functioning, and are usually observable in all settings, but they may vary. Children and young people 'along the spectrum exhibit a full range of intellectual functioning and language abilities' [WHO, 2022].
• A clinical diagnosis of 'autism spectrum disorder' may be made if a child or young person meets the standardized criteria defined in the International Statistical Classification of Diseases and Related Health Problems (ICD-11) or the American fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) [NICE, 2022; NHSE, 2023].
  • The term 'autism spectrum disorder' is a broad, heterogenous neurodevelopmental disorder which is behaviourally defined, with different levels of symptom severity, that encompasses autism, Asperger's syndrome, and atypical autism [Fuentes, 2021; NICE, 2021; NICE, 2022]. For the purposes of this CKS topic, the term 'autism' will be used throughout to include all children and young people with a diagnosis of 'autism spectrum disorder'.
  • Previous terms used in DSM-IV to describe autism include 'Asperger's disorder', 'childhood disintegrative disorder', and 'pervasive developmental disorder - not otherwise specified (PDD-NOS)' [Fuentes, 2021; NICE, 2022].

What are the causes and risk factors?

The precise cause of autism is not known, however, a number of different genetic, neurobiological, and environmental factors are thought to play a role in its development.

• Factors associated with an increased prevalence of autism in children and young people include [Fuentes, 2021] [NICE, 2022]:
  • Some chromosomal and genetic anomalies — such as Down's syndrome, Fragile X syndrome, muscular dystrophy, neurofibromatosis type 1, and tuberous sclerosis.
  • Preterm birth — gestational age less than 35 weeks.
  • Parental schizophrenia-like psychosis or affective disorder.
  • Prenatal exposure — maternal use of sodium valproate during pregnancy.
  • Birth complications resulting in central nervous system (CNS) malformation or dysfunction, such as cerebral palsy.
  • Neonatal or epileptic encephalopathy, including infantile spasms.
  • A learning disability. See the CKS topic on Learning disabilities for more information.
  • Neurodevelopmental disorders such as attention deficit hyperactivity disorder. See the CKS topic on Attention deficit hyperactivity disorder for more information.
  • Family history — the rate of autism in siblings is much higher than the rate in the general population. Twin studies demonstrate substantially higher concordance rates for symptoms of autism in monozygotic twins than in dizygotic twins [Tick, 2016]. In families with one autistic child, there is a 10% recurrence risk of autism and a 20–25% risk of other neurodevelopmental disorders in siblings. The recurrence risk increases to 36% in families with two autistic children [Fuentes, 2021].

How common is it?

The worldwide reported prevalence of autism in the literature has increased over time, possibly due to increased general awareness, broadening of diagnostic criteria, and improved access to specialist referral pathways [Hyman, 2020]. Prevalence estimates vary, however, depending on the methodology, case definitions, and diagnostic criteria used in epidemiological studies [Fuentes, 2021].

• The European Society of Child and Adolescent Psychiatry (ESCAP) practice guidance states that the worldwide prevalence estimates for autism have increased from 0.04% in the 1970s to 1–2% [Fuentes, 2021].
• A review of 42 studies noted that the diagnosis of autism is often delayed, with the mean age at diagnosis ranging from 38 to 120 months [Daniels, 2014]. Another review article states it is one of the most common childhood-onset neurodevelopmental disorders, and the mean age of diagnosis is 4–5 years [Zwaigenbaum, 2018].
• A systematic review and meta-analysis of 54 prevalence studies (n = 13,784,284) found the male-to-female odds ratio for autism was 3.25 in the general child population. This suggests a potential diagnostic gender bias where girls meeting diagnostic criteria for autism are disproportionately less likely to receive a clinical diagnosis and are more likely to be under-diagnosed [Loomes, 2017].
• Similarly, the National Institute for Health and Care Excellence (NICE) guideline notes that autism may be under-recognized and under-diagnosed in girls and children and young people with a learning disability [NICE, 2022]. See the CKS topic on Learning disabilities for more information.

Which conditions may be associated?

Autism may be associated with a range of coexisting cognitive, learning, language, medical, emotional, and behavioural conditions, which vary in their severity and impact on functioning [NICE, 2021] [NHSE, 2023]. These may be underdiagnosed due to difficulties in interpreting symptoms, atypical presentations, and difficulties in communication and accessing healthcare services [NICE, 2021] [NICE, 2022].

• Neurodevelopmental problems [Fuentes, 2021] [NICE, 2021] [NICE, 2022]
  • Global delay or a learning disability. See the CKS topic on Learning disabilities for more information.
    • About 50% of people with autism have a learning disability [Fuentes, 2021].
  • Severe visual and hearing impairments.
  • Motor or co-ordination disorders including cerebral palsy.
  • Complex speech and language disorders, including lack of spoken language.
  • A learning difficulty such as dyslexia, dyscalculia, or dyspraxia.
  • Attention deficit hyperactivity disorder. See the CKS topic on Attention deficit hyperactivity disorder for more information.
  • Epilepsy. See the CKS topic on Epilepsy for more information.
• Mental health problems [Fuentes, 2021] [NICE, 2022]
  • Anxiety, phobias, and obsessive-compulsive disorder. See the CKS topics on Generalized anxiety disorder and Obsessive-compulsive disorder for more information.
  • Depression and risk of self-harm. See the CKS topics on Depression in children and Self-harm for more information.
  • Conduct disorder. See the CKS topic on Conduct disorders in children and young people for more information.
  • Oppositional defiant disorder.
  • Tics or Tourette's syndrome.
• Functional problems [Fuentes, 2021] [NICE, 2022]
  • Sleep problems. See the CKS topic on Insomnia for more information.
  • Restricted diets and nutritional deficiencies.
  • Bladder and bowel symptoms, including constipation, and urinary or faecal incontinence. See the CKS topic on Constipation in children for more information.
• Other problems [Fuentes, 2021] [NICE, 2022] [NHSE, 2023]
  • Social stigma and discrimination; social isolation and exclusion; bullying at school.
  • Increased risk of child exploitation and maltreatment. See the CKS topic on Child maltreatment - recognition and management for more information.
    • Girls are at increased potential risk of victimisation, teasing, and sexual aggression or abuse [Fuentes, 2021].
  • Increased likelihood of unemployment and difficulties living independently. See the CKS topic on Autism in adults for more information.
  • Potential carer stress and impact on family members including siblings.

What is the prognosis?

Autism is a lifelong condition which cannot be cured. Its prognosis is varied and can be improved by early diagnosis and specialist assessment [Fuentes, 2021].

• The American Academy of Paediatrics (AAP) clinical report notes that the prognosis and trajectory of a child or young person diagnosed with autism typically cannot be predicted at the time of diagnosis [Hyman, 2020].
  • It states that young children with autism and language impairment have more social difficulty than children without language impairment. Children with autism and a learning disability typically have the most social difficulties. See the CKS topic on Learning disabilities for more information.
• Follow-up studies from childhood to adulthood generally indicate that the severity of core autism symptoms decreases over time, and many people show marked improvements in social and communication skills as they grow older. Among the strongest predictors of a positive outcome are the development of language and having a non-verbal IQ in or around the average range [Fuentes, 2021].
• A prospective longitudinal study of 129 children with autism aged 2.5 to 5.5 years identified four trajectory groups [Venker, 2014]:
  • 36% of participants had persistent severe symptoms.
  • 42% of participants had persistent moderate symptoms.
  • 8% of participants had worsening symptoms.
  • 14% of participants had improving symptoms.
  • It theorizes that early difficulties with 'non-verbal cognition' and daily living skills may be predictive of persistent severe symptoms over time.
• Children and young people with an average to high IQ are often able to function well in mainstream school and work independently over time [Styles, 2020].
• A review article notes that people with autism have 'poorer outcomes' than peers in areas of employment, relationships, independent living, and mental health [Iles, 2021].
• Autistic people are at increased risk of premature mortality from preventable and treatable illness, and are at an increased risk of death by suicide, sometimes due to atypical or late presentation with symptoms [Doherty, 2021].

When should I suspect autism in a preschool child?

• Suspect a diagnosis of autism in a preschool child if any of the following features present consistently in different settings:
  • Language delay or regression, unusual characteristics of spoken language, or reduced or infrequent use of language (assessed using the child's first language if they are multilingual), for example:
    • Language delay may present with babbling or the acquisition of fewer words than would be expected for their developmental age (for example less than 10 words by the age of 2 years).
    • Regression in or loss of use of speech may result in using single words when previously 2–3 word sentences were used to hold a conversation.
    • Unusual characteristics of spoken language that may include non-speech like vocalizations, odd or flat intonation, frequent repetition of set words or phrases ('echolalia'), and reference to self by name or 'you' or 'she/he' beyond 3 years.
    • Reduced and/or infrequent use of language for communication, for example, the use of single words when they are able to speak in sentences.
  • A reduced or negative response to others, for example:
    • Reduced, absent, or delayed responsiveness to their name being called despite normal hearing.
    • Reduced or absent social smiling; reduced or absent responsiveness to other people's facial expressions or feelings.
    • Unusual negative response to the requests of others.
    • Rejection of cuddles initiated by parents or carers, although they may initiate cuddles themselves.
  • Reduced or absent interaction with others, for example:
    • Reduced or absent awareness of personal space, or being unusually intolerant of people entering their personal space.
    • Reduced or absent social interest in others, including peers, and rejecting others. If interested in others, their approach might appear inappropriate and can appear aggressive or disruptive.
    • Reduced or absent imitation of others' actions.
    • Reduced or absent initiation of social play with others, may play alone.
    • Reduced or absent enjoyment of situations most children like, such as birthday parties.
    • Reduced or absent sharing of enjoyment.
  • Reduced eye contact, pointing, and other gestures, for example:
    • Reduced or absent use of gestures and facial expressions to communicate.
    • Reduced or poorly integrated gestures, facial expressions, body orientation, and eye contact.
    • Reduced or absent shared attention, manifest by a lack of gaze switching, the inability to follow where someone is pointing (they may look at their hand instead), or not using pointing or showing objects to share an interest.
  • Reduced or absent imagination and variety of pretend play.
  • Unusual or restricted interests and/or rigid and repetitive behaviours, for example:
    • Repetitive 'stereotypical' movements, such as hand flapping, body rocking while standing, spinning, and finger flicking.
    • Repetitive or stereotyped play, for example, opening and closing doors.
    • Overly-focused or unusual interests.
    • Excessive insistence on following their own agenda.
    • Extremes of emotional reactivity to change or new situations, and the insistence on things being 'the same'.
  • Over- or under-reaction to sensory stimuli, for example, sounds, smells, taste, and textures; extreme food fads.
• Be aware that making a diagnosis of autism may be challenging in:
  • A child under 24 months of age.
  • A child with a developmental age of less than 18 months. See the CKS topic on Learning disabilities for more information.
  • A child where there is a lack of information about their early life (for example if looked-after or adopted).
  • A child with a severe sensory impairment (such as hearing or vision) or a motor disorder (such as cerebral palsy).

When should I suspect autism in a primary school child?

• Suspect a diagnosis of autism in a primary school child if any of the following features are consistently present across different settings:
  • Unusual characteristics of spoken language (assessed using the child's first language if they are multilingual), for example:
    • Very limited use of speech.
    • Speaking with a monotonous tone.
    • Repetitive speech, with the frequent use of learnt phrases, or excessively discussing topics they are interested in.
    • Talking 'at' others rather than sharing a two-way conversation.
    • Responses to others that seem rude or inappropriate.
  • Reduced, absent, or negative response to others, for example:
    • Reduced or absent responses to other people's facial expressions or feelings.
    • Reduced or delayed response to their name being called, despite normal hearing.
    • Subtle difficulties in understanding other people's intentions — they may take things literally and misunderstand sarcasm or metaphors.
    • Unusually negative response to the requests of others.
  • Reduced or absent interaction with others, for example, they may have a reduced or absent:
    • Awareness of personal space, or are unusually intolerant of people entering their personal space.
    • Social interest in other people, including peers. They may reject others and if interested in others, their approach may seem inappropriately aggressive or disruptive.
    • Greeting and farewell behaviours.
    • Awareness of socially expected behaviour.
    • Ability to share in social play or ideas; may play alone.
    • Ability to adapt their style of communication to the social situation, for example, they may be overly formal or inappropriately familiar.
    • Enjoyment of situations that most children like.
  • Reduced or absent eye contact, pointing, and other gestures when interacting with others, for example:
    • Reduced and poorly integrated gestures, facial expressions, body orientation, or eye contact.
    • Reduced or absent shared attention, manifested by a lack of gaze switching, the inability to follow where someone is pointing (they may look at their hand instead), or not using pointing or showing objects to share an interest.
  • Reduced or absent ideas and imagination, for example:
    • Reduced or absent flexible imaginative play or creativity; scenes seen on visual media (such as television) may be re-enacted.
    • Makes comments without awareness of social niceties or hierarchies.
  • Unusual or restricted interests and/or rigid and repetitive behaviours, for example:
    • Repetitive movements, such as hand flapping, body rocking while standing, spinning, or finger flicking.
    • Plays repetitively with objects rather than people.
    • Overly focused or unusual interests.
    • Rigid expectation that other children should adhere to rules of play.
    • Excessive insistence on following their 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, sounds, smells, taste, and textures; may have extreme food fads.
• Other clinical features that may suggest a diagnosis of autism include:
  • An unusual profile of skills or deficits, for example social or motor coordination skills may be poorly developed, while particular areas of knowledge, reading, or vocabulary skills are advanced for their chronological or mental age.
  • Social and emotional development is more immature than other areas of development; excessive trusting; lack of common sense; less independent than peers.
• Be aware that making a diagnosis of autism may be challenging in:
  • A child with a developmental age of less than 18 months. See the CKS topic on Learning disabilities for more information.
  • A child where there is a lack of information about their early life (for example if looked-after or adopted).
  • A child with a complex mental health problem, severe sensory impairment (such as hearing or vision), or a motor disorder (such as cerebral palsy).
  • A child with milder symptoms and/or average or above average intelligence.

When should I suspect autism in a secondary school child?

• Suspect a diagnosis of autism in a secondary school child or young person if any of the following features are consistently present across different settings:
  • Unusual or reduced communication behaviours (assessed using the child's first language if they are multilingual), for example:
    • Very limited use of speech.
    • Speaking with a monotonous tone.
    • Repetitive speech, with frequent use of learnt phrases; excessively discussing topics they are interested in.
    • Talking 'at' others rather than sharing a two-way conversation.
    • Responses that seem rude or inappropriate.
  • Unusual or reduced social interaction with others, for example, they may have:
    • A reduced or absent awareness of personal space, or are unusually intolerant of other people entering their personal space.
    • Longstanding difficulties in reciprocal social communication and interaction; few close friends or reciprocal relationships.
    • A reduced or absent understanding of friendship.
    • An apparent preference for being alone; social isolation.
    • Reduced or absent greeting and farewell behaviours.
    • A lack of awareness and understanding of socially expected behaviour.
    • Problems with losing at games, turn-taking, and understanding 'changing the rules'.
    • A lack of awareness or interest in what other young people their age are interested in.
    • An inability to adapt their style of communication to social situations, for example, may be overly formal or inappropriately familiar.
    • Difficulties in understanding others' intentions; may take things literally and misunderstand sarcasm or metaphors.
    • May make comments without awareness of social niceties or hierarchies.
    • Usually negative response to others' requests.
  • Reduced eye contact, pointing, and other gestures when interacting with others.
  • Reduced or absent ideas and imagination, for example, a lack of flexible social imaginative play and creativity; scenes seen on visual media (for example television) may be re-enacted.
  • Unusual or restricted interests and/or rigid and repetitive behaviours, for example:
    • Repetitive movements, such as hand flapping, body rocking while standing, spinning, or finger flicking.
    • Preference for highly specific interests or hobbies.
    • A strong adherence to rules or fairness leading to arguments.
    • Highly repetitive behaviours or rituals that negatively affect daily activities.
    • Excessive emotional distress at what seems trivial to others, for example, changes 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, sounds, smells, taste, and textures; may have extreme food fads.
• Other clinical features which may suggest a diagnosis of autism include:
  • An unusual profile of skills and deficits, for example poorly developed social or motor coordination skills, while particular areas of knowledge, reading, or vocabulary skills are advanced for their chronological or mental age.
  • Social and emotional development more immature than other areas of development; excessive trusting; lack of common sense; less independent than peers.
• Be aware that making a diagnosis of autism may be particularly challenging in:
  • A child or young person with a developmental age of less than 18 months. See the CKS topic on Learning disabilities for more information.
  • A child or young person where there is a lack of information about their early life (for example if looked-after or adopted).
  • A child or young person with a complex mental health problem, severe sensory impairment (such as hearing or vision), or a motor disorder (such as cerebral palsy).
  • An older teenager.

How should I assess a child or young person with suspected autism?

If a child or young person has a suspected diagnosis of autism, encourage and support family members and/or carers to be involved in care and management decisions wherever appropriate.

• Take a history, taking into account the person's communication needs, developmental stage, level of understanding, and severity and duration of features suggesting autism.
  • Check whether they have a preferred method of communication with others, such as the use of communication aids.
  • Make adjustments to accommodate sensory impairments (including vision and hearing).
  • Use different methods and formats for communication which are meaningful for the child or young person (such as written words; signing; visual aids, pictures, symbols, and objects; practical demonstrations; gestures or verbal).
  • Give the person time to process information before they respond.
• Ask the child or young person, their family members and/or carers about:
  • The developmental history and behaviour, including difficulties with speech, language and communication; interaction with others and social skills; sensory difficulties; impact on home life, education, and social care; the severity and duration of features of autism, and the extent to which features are present in different settings (such as home and school).
  • Family history including similar difficulties and/or neurodevelopmental disorders; social relationships with family members, carers, staff (such as nursery staff or teachers), and peers; any history of attachment difficulties; any history of trauma, neglect, or abuse; need for support with activities of daily living.
  • Antenatal and perinatal history including maternal exposure to drugs, birth weight and any risk factors for the development of autism.
  • Past and present physical coexisting conditions including difficulties with motor and co-ordination skills; bladder and bowel continence; feeding and nutrition; sensory problems including vision and hearing; sleeping problems; and other needs; and the likelihood of an alternative diagnosis.
  • Educational history (intellectual ability and learning style; academic skills; level of help and support required with reading, writing, or numeracy; any education, health and care plan; any qualifications achieved). See the CKS topic on Learning disabilities for more information.
  • Any emotional, psychological, mental health problems, or behaviour that challenges; problems with concentration and attention; any risk of self-harm, harm to others, or self-neglect; and any risk of exploitation, abuse, or neglect by others. See the CKS topics on Child maltreatment - recognition and management and Learning disabilities for more information about behaviour that challenges.
  • The level of concern and impact of features of autism on the child or young person's daily functioning, and the impact on family members including parents and siblings and/or carers.
  • Any previous assessments, medication and interventions, and response.
  • Input from professionals in other health, social care, or educational care settings.
• Observe the child or young person, including:
  • General appearance, developmental stage, and growth.
  • Eye contact.
  • Use of vocabulary and language skills (expressive and receptive).
  • Social interaction and communication skills.
  • Behaviour.
  • Physical examination including skin for signs of neurocutaneous disorders, neurological examination, and hearing and vision assessment.

What else might it be?

There is considerable overlap in diagnostic features with other neurodevelopmental, mental health, and communication disorders. Conditions that may present with similar clinical features to autism include:

• Neurodevelopmental disorders
  • Specific language delay or disorder — will usually develop compensatory non-verbal communication and have normal imagination and play, relative strengths in reciprocal social interaction and empathy, and a clear positive approach to peer friendships.
  • Learning disability or global developmental delay — likely to have delay across all areas of development with imitation present, and social intent and interest consistent with their developmental age. See the CKS topic on Learning disabilities for more information.
  • Developmental coordination disorder — organizational and motor planning difficulties with normal play and language.
  • Stereotypic movement disorder — early onset displays of repetitive motor behaviour which interfere with social, educational, or other activity, and may result in self-injury. Behaviour is not better explained by another neurodevelopmental or mental health disorder.
• Neurodevelopmental regression disorders
  • Rett syndrome — mainly affects girls and is characterized by motor regression, ataxia, a loss of purposeful hand movements ('hand-wringing' movements are characteristic), and problems with oro-motor skills.
  • Epileptic encephalopathy — the onset of symptoms is usually over a period of a few days and typically develops between the ages of 2–7 years after a period of normal development. It is characterized by the inability to recognize and interpret environmental sounds and the loss of previously acquired words and understanding of language. Social interest and play are preserved.
• Mental health and behavioural disorders
  • Social communication disorder — presents with deficits in social language and communication and social interaction, but no associated restricted repetitive behaviours, interests, and activities.
  • Attention deficit hyperactivity disorder — able to demonstrate social reciprocity and appropriate non-verbal communication, understands the rules of social norms, and does not usually react with marked distress to stimuli to which they are overly sensitive. The behaviour is driven by impulsivity with an understanding of the potential dangers. See the CKS topic on Attention deficit hyperactivity disorder for more information.
  • Depression — usually episodic events with a history of 'normal' social behaviour when not depressed. See the CKS topic on Depression in children for more information.
  • Anxiety disorder — can be associated with repetitive behaviour, but not typically stereotyped. Also typically has an interest in, and cares about, the opinions of others. See the CKS topic on Generalized anxiety disorder for more information.
  • Obsessive-compulsive disorder — the onset of symptoms usually occurs after 4 years of age, and behaviours are usually associated with distress. The content of obsessions and rituals are usually associated with avoiding harm and magical thinking. See the CKS topic on Obsessive-compulsive disorder for more information.
  • Oppositional defiant disorder — usually understands that their behaviour is undesirable or unacceptable, but still deliberately persists with the behaviour. They are able to show an understanding and competence of accepted social interaction and have no stereotypic or repetitive behaviour.
  • Conduct disorder — there is evidence of competence in social relationships and absence of early social communication problems. Behaviour can show sophisticated strategies to avoid detection. See the CKS topic on Conduct disorders in children and young people for more information.
  • Psychosis and schizophrenia — usually develops after a period of normal, or near normal, development. Hallucinations and/or delusions are defining features. See the CKS topic on Psychosis and schizophrenia for more information.
• Other
  • Severe hearing impairment — non-verbal communication, play, imagination, social interest, and initiation of peer interaction are usually unaffected.
  • Severe visual impairment — reduced or absent eye contact and shared attention (gaze switching or following a point), but normal imagination and play and no restricted interests or repetitive behaviours.
  • Selective mutism — there is usually a history of appropriate quality of communication and interaction in some circumstances, typically at home, where the child or young person usually talks normally.
  • Child maltreatment — can present with a marked change in behaviour which can be linked to maltreatment, specifically disinhibited social engagement disorder (DSED) and reactive attachment disorder (RAD) which are two trauma and stressor related disoders. DSED is characterized by indiscriminate behaviours and RAD by failure to seek or accept comfort and emotional withdrawal. They are considered different disorders but may co-exist. DSED and RAD are serious disorders of social functioning thought to have a poor long-term prognosis if untreated. These diagnoses should only be made of there is a history of serious early childhood maltreatment. See the CKS topic on Child maltreatment - recognition and management for more information. 

Scenario: How should I manage a child or young person with suspected autism ?

From birth to 19 years.

Scenario: How should I manage a child or young person with confirmed autism?

From birth to 19 years.

Search strategy

Scope of search

A literature search was conducted for guidelines and systematic reviews on primary care management of autism in children.

Search dates

October 2018 - April 2023

Key search terms

The terms listed below are the core search terms that were used for EBSCO MEDLINE (searched 17th October 2018). These terms were combined with search filters for systematic reviews and guidelines in EBSCO MEDLINE. The strategy was adapted for The Cochrane Library databases. 

S5 S1 OR S2 OR S3 OR S4 

S4 AB pervasive child development disorder* OR TI pervasive child development disorder*

S3 AB disintegrative disorder* OR TI disintegrative disorder* 

S2 AB ( autism or autistic or asperger* ) OR TI ( autism or autistic or asperger* ) 

S1 (MH "Autism Spectrum Disorder+") 

Sources of guidelines

• National Institute for Health and Care Excellence (NICE)
• Scottish Intercollegiate Guidelines Network (SIGN)
• Royal College of Physicians
• Royal College of General Practitioners
• Royal College of Nursing
• NICE Evidence
• World Health Organization
• Guidelines International Network
• TRIP database
• Agency for Healthcare Research and Quality
• Institute for Clinical Systems Improvement
• National Health and Medical Research Council (Australia)
• Royal Australian College of General Practitioners
• British Columbia Medical Association
• Canadian Medical Association
• Alberta Medical Association
• Michigan Quality Improvement Consortium
• Singapore Ministry of Health
• National Resource for Infection Control
• RefHELP NHS Lothian Referral Guidelines
• Medline (with guideline filter)
• Driver and Vehicle Licensing Agency
• NHS Health at Work (occupational health practice)

Sources of systematic reviews and meta-analyses

• The Cochrane Library:
  • Systematic reviews
  • Protocols
  • Database of Abstracts of Reviews of Effects
• Medline (with systematic review filter)
• EMBASE (with systematic review filter)

Sources of health technology assessments and economic appraisals

• NIHR Health Technology Assessment programme
• The Cochrane Library:
  • NHS Economic Evaluations
  • Health Technology Assessments
• Canadian Agency for Drugs and Technologies in Health
• International Network of Agencies for Health Technology Assessment

Sources of randomized controlled trials

• The Cochrane Library:
  • Central Register of Controlled Trials
• Medline (with randomized controlled trial filter)
• EMBASE (with randomized controlled trial filter)

Sources of evidence based reviews and evidence summaries

• Bandolier
• Drug and Therapeutics Bulletin
• TRIP database
• Central Services Agency COMPASS Therapeutic Notes

Sources of national policy

• Department of Health
• Health Management Information Consortium (HMIC)

Patient experiences

• Healthtalk
• BMJ - Patient Journeys

Sources of medicines information

The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.

• British National Formulary (BNF)
• electronic Medicines Compendium (eMC)
• European Medicines Agency (EMEA)
• LactMed
• Medicines and Healthcare products Regulatory Agency (MHRA)
• REPROTOX
• Scottish Medicines Consortium
• Stockley's Drug Interactions
• TERIS
• TOXBASE
• Micromedex
• UK Medicines Information

Stakeholder engagement

Our policy

The external review process is an essential part of CKS topic development. Consultation with a wide range of stakeholders provides quality assurance of the topic in terms of:

• Clinical accuracy.
• Consistency with other providers of clinical knowledge for primary care.
• Accuracy of implementation of national guidance (in particular NICE guidelines).
• Usability.

Principles of the consultation process

• The process is inclusive and any individual may participate.
• To participate, an individual must declare whether they have any competing interests or not. If they do not declare whether or not they have competing interests, their comments will not be considered.
• Comments received after the deadline will be considered, but they may not be acted upon before the clinical topic is issued onto the website.
• Comments are accepted in any format that is convenient to the reviewer, although an electronic format is encouraged.
• External reviewers are not paid for commenting on the draft topics.
• Discussion with an individual or an organization about the CKS response to their comments is only undertaken in exceptional circumstances (at the discretion of the Clinical Editor or Editorial Steering Group).
• All reviewers are thanked and offered a letter acknowledging their contribution for the purposes of appraisal/revalidation.
• All reviewers are invited to be acknowledged on the website. All reviewers are given the opportunity to feedback about the external review process, enabling improvements to be made where appropriate.

Stakeholders

• Key stakeholders identified by the CKS team are invited to comment on draft CKS topics. Individuals and organizations can also register an interest to feedback on a specific topic, or topics in a particular clinical area, through the Getting involved section of the Clarity Informatics website.
• Stakeholders identified from the following groups are invited to review draft topics:
  • Experts in the topic area.
  • Professional organizations and societies (for example, Royal Colleges).
  • Patient organizations, Clarity has established close links with groups such as Age UK and the Alzheimer’s Society specifically for their input into new topic development, review of current topic content and advice on relevant areas of expert knowledge.
  • Guideline development groups where the topic is an implementation of a guideline.
  • The British National Formulary team.
  • The editorial team that develop MeReC Publications.
• Reviewers are provided with clear instructions about what to review, what comments are particularly helpful, how to submit comments, and declaring interests.

Patient engagement

Clarity Informatics has enlisted the support and involvement of patients and lay persons at all stages in the process of creating the content which include:

• Topic selection
• Scoping of topic
• Selection of clinical scenarios
• First draft internal review
• Second draft internal review
• External review
• Final draft and pre-publication

Our lay and patient involvement includes membership on the editorial steering group, contacting expert patient groups, organizations and individuals.

Evidence exclusion criteria

Our policy

Scoping a literature search, and reviewing the evidence for CKS is a methodical and systematic process that is carried out by the lead clinical author for each topic. Relevant evidence is gathered in order that the clinical author can make fully informed decisions and recommendations. It is important to note that some evidence may be excluded for a variety of reasons. These reasons may be applied across all CKS topics or may be specific to a given topic.

Studies identified during literature searches are reviewed to identify the most appropriate information to author a CKS topic, ensuring any recommendations are based on the best evidence. We use the principles of the GRADE and PICOT approaches to assess the quality of published research. We use the principles of AGREE II to assess the quality of published guidelines.

Standard exclusions for scoping literature:

• Animal studies
• Original research is not written in English

Possible exclusions for reviewed literature:

• Sample size too small or study underpowered
• Bias evident or promotional literature
• Population not relevant
• Intervention/treatment not relevant
• Outcomes not relevant
• Outcomes have no clear evidence of clinical effectiveness
• Setting not relevant
• Not relevant to UK
• Incorrect study type
• Review article
• Duplicate reference

Organizational, behavioural and financial barriers

Our policy

The CKS literature searches take into consideration the following concepts, which are discussed at the initial scoping of the topic.

• Feasibility
  • Studies are selected depending on whether the intervention under investigation is available in the NHS and can be practically and safely undertaken in primary care.
• Organizational and Financial Impact Analysis
• Studies are selected and evaluated on whether the intervention under investigations may have an impact on local clinical service provision or national impact on cost for the NHS. The principles of clinical budget impact analysis are adhered to, evaluated and recorded by the author. The following factors are considered when making this assessment and analysis.
  • Eligible population
  • Current interventions
  • Likely uptake of new intervention or recommendation
  • Cost of the current or new intervention mix
  • Impact on other costs
  • Condition-related costs
  • In-direct costs and service impacts
  • Time dependencies
• Cost-effectiveness or cost-benefit analysis studies are identified where available. 

We also evaluate and include evidence from NICE accredited sources which provide economic evaluations of recommendations, such as NICE guidelines. When a recommended action may not be possible because of resource constraints, this is explicitly indicated to healthcare professionals by the wording of the CKS recommendation.

Declarations of interest

Our policy

Clarity Informatics requests that all those involved in the writing and reviewing of topics, and those involved in the external review process to declare any competing interests. Signed copies are securely held by Clarity Informatics and are available on request with the permission of the individual. A copy of the declaration of interest form which participants are asked to complete annually is also available on request. A brief outline of the declarations of interest policy is described here and full details of the policy is available on the Clarity Informatics website. Declarations of interests of the authors are not routinely published, however competing interests of all those involved in the topic update or development are listed below. Competing interests include:

• Personal financial interests
• Personal family interest
• Personal non-financial interest
• Non-personal financial gain or benefit

Although particular attention is given to interests that could result in financial gains or losses for the individual, competing interests may also arise from academic competition or for political, personal, religious, and reputational reasons. An individual is not obliged to seek out knowledge of work done for, or on behalf of, the healthcare industry within the departments for which they are responsible if they would not normally expect to be informed.

Who should declare competing interests?

Any individual (or organization) involved in developing, reviewing, or commenting on clinical content, particularly the recommendations should declare competing interests. This includes the authoring team members, expert advisers, external reviewers of draft topics, individuals providing feedback on published topics, and Editorial Steering Group members. Declarations of interest are completed annually for authoring team and editorial steering group members, and are completed at the start of the topic update and development process for external stakeholders.

Competing interests declared for this topic:

None.