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Mental health

Autism in adults

Last revised in November 2025

Autism spectrum disorder is evidenced by difficulties in social interaction, communication, stereotypic behaviours, resistance to change, or restricted interests.

Autism in adults: Summary

  • Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition characterized by persistent difficulties in social interaction and communication, and the presence of stereotypic (rigid and repetitive) behaviours, resistance to change, or restricted interests.
  • ASD is strongly associated with several coexisting conditions which may significantly impact on the wellbeing of the person and their family and/or carers.
    • Mental health or behavioural disorders associated with ASD include anxiety and depression, attention deficit hyperactivity disorder, and learning (intellectual) disability.
    • Other conditions associated with ASD include sensory problems, gastrointestinal disturbances (such as inflammatory bowel disease, coeliac disease, diarrhoea, and constipation), and epilepsy.
  • The autism spectrum is very wide, ranging from people with limited self-help, independence, academic, or verbal skills through to those who are fully independent but have significant social difficulties.
    • The features of ASD may range from mild to severe, and the presentation varies greatly. 
    • The severity and impact of ASD differs at different stages of life, in response to interventions, and with the presence of coexisting conditions.
  • The precise cause of ASD is unknown. However, numerous genetic and environmental factors are thought to play a role in development.
  • The identification, assessment, and diagnosis of autism spectrum disorder (ASD) in adults may be challenging as ASD often coexists with other mental health disorders, such as depression.
  • ASD is likely under-diagnosed in adults, particularly among women; the estimated prevalence in adults is about 1.1%.
  • ASD is a life-long disorder, but the prognosis can be improved by early diagnosis and assessment.
  • The diagnosis of ASD is established by a specialist following referral. Ideally, this is carried out by an autism team, if available.
  • Primary care management of people with confirmed ASD includes:
    • Ensuring that the person with ASD has access to appropriate psychosocial interventions for managing core symptoms and improving life skills.
    • Ensuring that those with ASD and an associated mental health condition are offered appropriate pharmacological treatment or referred to an appropriate specialist.
    • Initial management of behaviour that challenges such as physical, emotional, or self-injurious behaviour.
    • Providing the person with ASD and their family, partners, and/or carers verbal and written information on management and information about local support groups and services.
    • Routine review, where appropriate.
    • Offering families, partners, and/or carers of adults with ASD an assessment of their own needs.
  • Secondary care management includes:
    • Specialist diagnostic and assessment services.
    • Specialist care and interventions.
    • Advice and training to other health and social care professionals on the diagnosis, assessment, care, and interventions for adults with ASD (as not all may be in the care of a specialist team).
    • Support in accessing, and maintaining contact with, housing, educational, and employment services.
    • Support to families, partners, and/or carers where appropriate.
    • Care and interventions for adults with ASD living in specialist residential accommodation.
    • Training, support, and consultation for staff who care for adults with ASD in residential and community settings.

Have I got the right topic?

From age 18 years onwards.

This CKS topic covers the primary care management of autism spectrum disorder (ASD) in people aged 18 years and over. In this topic, 'autism' refers to 'autism spectrum disorders' which encompass several previously used diagnostic terms (such as classic autism, Asperger's syndrome,  atypical autism, or pervasive developmental disorder not otherwise specified).

This CKS topic does not cover the recognition and management of ASD in children.

There are separate CKS topics on Learning disabilities, Attention deficit hyperactivity disorder, Autism in children, Depression, Generalized anxiety disorder, Obsessive-compulsive disorder, and Post-traumatic stress disorder.

The target audience for this CKS topic is healthcare professionals working within the NHS in the UK, and providing first contact or primary healthcare.

How up-to-date is this topic?

Changes

November 2025 — minor update. Added additional information regarding possible undiagnosed autism in older adults.

Previous changes

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

June 2024 — reviewed.  A literature search was conducted in May 2024 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. Minor structural changes have been applied to the topic, with the basis for recommendation sections updated to align with current guidance and evidence. The term, "People with autism" has been updated to "Autistic people" to align with changes in the NICE guidance from 2021.

May 2020 — minor update. Typographical error corrected.

May to June 2019 — new topic. The evidence base has been reviewed in detail, and recommendations are clearly justified and transparently linked to the supporting evidence.

Update

New evidence

Evidence-based guidelines

No new evidence-based guidelines since 1 June 2024.

HTAs (Health Technology Assessments)

No new HTAs since 1 June 2024.

Economic Appraisals

No new economic appraisals relevant to England since 1 June 2024.

Systematic reviews and meta-analyses

No new systematic reviews or meta-analysis which reach the CKS threshold for inclusion since 1 June 2024.

Primary evidence

No new primary evidence which reaches the CKS threshold for inclusion published since 1 June 2024.

New policies

No new national policies or guidelines since 1 June 2024.

New safety alerts

No new safety alerts since 1 June 2024.

Changes in product availability

No changes in product availability since 1 June 2024.

Goals and outcome measures

Goals

To support primary health care professionals to:

  • Maintain an index of suspicion regarding the detection of autism spectrum disorder in adults.
  • Ensure appropriate referral to multidisciplinary autism teams for diagnosis and initiation of management, where appropriate.
  • Monitor, liaise with and support the person and their families, partners, and/or carers in primary care.

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

  • 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.
  • People having a diagnostic assessment for autism are also assessed for coexisting physical health conditions and mental health problems.
  • Autistic people 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.
  • Autistic people are offered a named key worker to coordinate the care and support detailed in their personalised plan.
  • Autistic people 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.
  • Autistic people are not prescribed medication to address the core features of autism.
  • Autistic people who develop behaviour that challenges are assessed for possible triggers, including physical health conditions, mental health problems and environmental factors.
  • Autistic people 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]

Background information

What is it?

  • Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition characterized by persistent difficulties in social interaction and communication, and stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests [SIGN, 2016; Huang, 2020; NICE, 2021; NCCMH, 2023]. Difficulty with cognitive and behavioural flexibility and emotional regulation difficulties may also be presenting features [Hirota, 2023].
    • Difficulties in social interaction and communication [NCCMH, 2023]:
      • Atypical eye contact (staring at people for too long or not maintaining eye contact).
      • Intrusion into others’ personal space (standing too close to someone else, talking too loudly, or touching people inappropriately) or becoming obsessed with a person to an intrusive extent.
      • Reduced interest in socialising.
      • Social anxiety.
      • Loneliness (and risk of depression).
      • Social naïveté and vulnerability to exploitation.
      • Bluntness or lack of diplomacy; unable to tell white lies; reduced empathy.
      • Lack of social awareness.  
      • Difficulties in the following areas: understanding others’ behaviour, motives, and intentions; reading other people’s facial expressions or vocal intonation; taking turns in conversation or tendency towards monologue; making small talk or maintaining a conversation; reading between the lines or picking up hints; seeing things from another person’s perspective; resolving conflict; anticipating what might offend others; keeping track of what the listener or reader needs to know; making or keeping friends; understanding other people’s expectations; conforming; judging what might be relevant or irrelevant to others; coping with or interacting in social groups; and coping with ambiguity in language.
    • Stereotypic (rigid and repetitive) behaviours, resistance to change, or restricted interests may include:
      • Avoiding crowded places.
      • Difficulties multi-tasking; doing one thing at a time.
      • Narrow, deep interests rather than broad superficial interests.
      • Preference for repetition and routine; need for sameness (eating the same foods, wearing the same clothes, taking the same routes, going to the same places) and avoidance of novelty
      • Anxiety in the face of change.
      • Preference for predictability and predictable events (watching washing machines spinning or trains going down tracks).
      • Being extremely passive if an activity of interest is not available or initiated by someone else.
      • Need for clarity and expressing a pedantic request for precision and avoiding ambiguity.
      • Attention to small details.
      • Development of ‘fixated interests’.
  • ASD is strongly associated with a number of coexisting conditions that may significantly impact on the wellbeing of the person and their families, partners, and/or carer.
    • At least one associated mental health disorder occurs in approximately 70% of people with ASD [NICE, 2017]. These include [Howes, 2018; Hollocks, 2019; Huang, 2020; BMJ Best Practice, 2023; Hirota, 2023; NCCMH, 2023]:
      • Anxiety and depression.
      • Learning (intellectual) disability. 
      • Obsessive-compulsive disorder (OCD).
      • Attention deficit hyperactivity disorder (ADHD).
      • Tourette’s syndrome/tic disorder.
      • Dysexecutive syndrome.
      • Developmental coordination disorder.
      • Catatonia.
      • Eating disorders.
      • Gender identity disorder.
      • Personality disorder.
      • Psychosis.
      • Sleeping difficulties.
    • Other coexisting conditions associated with ASD include:
      • Sensory problems — occur in about 90% of adults with ASD without a learning disability [NCCMH, 2023].
      • Gastrointestinal problems — occur in almost 50% of adults with ASD and a learning disability [NCCMH, 2023]. These include inflammatory bowel disease, coeliac disease, chronic diarrhoea, and constipation [Buckley, 2017; Kim, 2022].
      • Epilepsy — there is an increased incidence of epilepsy (20–30%) in people with ASD [Buckley, 2017; BMJ Best Practice, 2023; Hirota, 2023].
  • The autism spectrum is very wide, ranging from people with limited self-help, independence, academic, or verbal skills through to those who are fully independent but have significant social difficulties [BMJ Best Practice, 2023; NCCMH, 2023].
    • The features of ASD may range from mild to severe, and the presentation varies greatly in different people [NICE, 2021; NCCMH, 2023].
    • The severity and impact of ASD differs at different stages of life, in response to interventions, and with the presence of coexisting conditions [NICE, 2021; NCCMH, 2023].
  • Historically, several clinical diagnoses have been used to describe a group of related conditions characterized by the delayed development of social interaction and communication skills (previously termed pervasive developmental disorders). These include:
    • Autism, autistic disorder, classic autism, or Kanner syndrome.
    • Asperger syndrome — People with Asperger syndrome are of average or above average intelligence and do not have the learning disabilities that many autistic people have (although they may have specific learning difficulties). They usually have fewer problems with speech but may still have difficulties with understanding and processing language [NAS, 2023; NCCMH, 2023].
    • Atypical autism or pervasive developmental disorder not otherwise specified (PDD-NOS) — These diagnoses have not been officially recognised since the fifth edition update of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) and the eleventh edition update of the International Classification of Diseases (ICD-11) [NAS, 2023].
  • The recommended standard is to use the term 'ASD' to aid with the recognition that these conditions represent a single continuous clinical entity which varies in severity. People with a historical diagnosis of autistic disorder, Asperger's syndrome, or PDD-NOS should have their diagnosis updated to ASD [Hirota, 2023]. However, it is recognized that some people may prefer to retain and use their original diagnostic term [BMJ Best Practice, 2023].

What are the causes and risk factors?

  • The precise cause of autistic spectrum disorder (ASD) is unknown. However, genetic factors, including genetic and chromosomal disorders, play a substantial role in the aetiology (estimates of heritability are between 40–90%) [Howes, 2018; Genovese, 2020; NCCMH, 2023]. A number of different environmental factors are also thought to play a role in development.
  • Factors associated with an increased prevalence of ASD include:
    • Male sex — the proportion of males to females diagnosed with ASD varies across studies but always shows a greater proportion of males to females, mostly ranging from 3:1 to 5:1 [NCCWCH, 2022; BMJ Best Practice, 2023; NCCMH, 2023].
    • Family history of ASD — siblings of people with ASD have a 50 times greater risk of ASD, with a recurrence rate of 5–10% [Park, 2016; BMJ Best Practice, 2023]. The concordance rate reaches up to 82–92% in monozygotic twins compared with 1–10% in dizygotic twins [Park, 2016].
    • Genetic disorders, such as Fragile X, Angelman syndrome, tuberous sclerosis and Rett syndrome [Genovese, 2020].
    • Chromosomal disorders, such as Down's syndrome and Turner syndrome [Genovese, 2020].
    • Environmental factors, including prenatal, perinatal, and neonatal factors, such as [NICE, 2017; Howes, 2018; BMJ Best Practice, 2023; Hirota, 2023]:
      • Advanced parental age. 
      • Maternal use of sodium valproate during pregnancy.
      • Maternal vitamin D deficiency.
      • Maternal obesity.
      • Maternal preeclampsia.
      • Parental schizophrenia-like psychosis or affective disorder.
      • Maternal pre/postnatal infections (TORCH).
      • Prematurity (particularly gestational age less than 35 weeks).
      • Very low birth weight (less than 1500 g).
      • Perinatal hypoxia. 
      • Neonatal or epileptic encephalopathy.
      • Birth defects associated with central nervous system malformation and/or dysfunction, including cerebral palsy.
    • Neurodevelopmental conditions, such as [NICE, 2017; Howes, 2018; BMJ Best Practice, 2023]:
      • Learning (intellectual) disability. 
      • Attention deficit hyperactivity disorder.
      • Muscular dystrophy.
      • Neurofibromatosis.
      • Tuberous sclerosis.
  • It is important to note that:
    • ASD is not caused by emotional deprivation or the way a person has been brought up [NCCMH, 2023].
    • There is no link between ASD and mumps, measles, and rubella (MMR) vaccine, based on all published research [NCCMH, 2023].

How common is it?

  • Autism spectrum disorder (ASD) is one of the most common childhood-onset neurodevelopmental disorders. In the UK, the estimated prevalence in adults is about 1.1%, with relative consistency across studies [Huang, 2020; NCCWCH, 2022; BMJ Best Practice, 2023; NCCMH, 2023].
    • Comparing this estimated prevalence of ASD in adults with that of children (1-2%) suggests that ASD is underdiagnosed among adults [Huang, 2020].
    • One population-based cohort study sampled 10% of all GP records in England and found that adults aged 20–49 years and those over the age of 50 were less likely to have been diagnosed compared to people under 20 years of age. The authors projections suggest that up to 489,900 people aged 20–49 years, and that up to 591,600 people over the age of 50 may have undiagnosed autism. These projections suggest that the total autistic population in England could be over 1.2 million; nearly twice the widely-cited figure of 700,000 given for the entirety of the UK [O'Nions, 2023].
  • The proportion of males to females diagnosed with ASD varies across studies but always shows a greater proportion of males to females, mostly ranging from 3:1 to 5:1 [NCCWCH, 2022; BMJ Best Practice, 2023; NCCMH, 2023].
    • ​​​​​This gender split is largely thought to be as a result of females being better at camouflaging their difficulties and ‘fitting in’ with society’s expectations [Buckley, 2017; McQuaid, 2022]. It is also thought that ASD traits in girls are under-reported and hence under-diagnosed [SIGN, 2016].
    • Camouflaging techniques, which may increase the possibility of underdiagnosis, may also be more common among those who are gender diverse or diagnosed with ASD in adulthood [McQuaid, 2022].
  • Studies of autism in adults have shown that up to 80% of people have experienced a difficulty in obtaining a diagnosis, and many adults will not have received a formal diagnosis [NCCMH, 2023].

What are the complications?

  • Complications of autism spectrum disorder (ASD) in adulthood include [Howlin, 2021; NCCMH, 2023; BMJ Best Practice, 2023]:
    • Failed relationships, including marriage(s).
    • Unemployment — approximately 30% of adults with ASD in the UK are in full or part-time paid employment, compared with 80% of non-disabled people.
    • Problems at work.
    • Inability to live independently (only a minority of affected people with lower levels of impairment manage to work and live independently).
    • Poor general health (because people with ASD often do not seek help for medical problems).
    • An increased vulnerability to mental health problems, such as anxiety and depression.
    • Social isolation.
    • Reduced quality of life [Ayres, 2018].
    • Premature mortality — the average age of death for people with ASD and no intellectual disability is 16 years younger than the rest of the population, and 30 years younger for those with ASD and an intellectual disability. The reasons for this disparity are multifactorial, but problems appropriately accessing healthcare and diagnostic overshadowing have been implicated [Hirvikoski, 2016; Buckley, 2017].
  • The management and support of people with ASD and their families, partners, and/or carers incur substantial costs to the health and social care services and the wider public sector [NCCMH, 2023].
    • ASD costs the country an estimated £32 billion per year, making it the single most expensive health condition, exceeding cancer, heart disease, and stroke [Buckley, 2017].
    • The total cost, including accommodation, support, loss of earnings, and health care, for a person with ASD over their life span has been estimated to range between £1.5 million to £0.92 million for a person with or without intellectual disability, respectively [Howes, 2018].
  • Autistic women may be more likely to experience poorer social and employment outcomes, increased mood and anxiety-related problems, and lower overall quality of life [Howlin, 2021]. This sex-based bias in the diagnosis of autism results in females who are more severely affected experiencing poorer outcomes. 

What is the prognosis?

  • Autism spectrum disorder (ASD) is a lifelong disorder [NICE, 2021; NCCMH, 2023]. It varies greatly in terms of the level of impairment, which influences the prognosis.
    • The presence or absence of associated learning (intellectual) disability, language impairment, and additional mental health problems are the most important prognostic factors [Howlin, 2021]. Unaffected language development and the absence of an associated intellectual disability are associated with a more favourable prognosis [APA, 2022].
    • A minority of affected people with lower-level impairment live and work independently in adulthood [APA, 2022; Hirota, 2023]. It has been estimated that 15% of adults with ASD live independent lives, whereas 15% to 20% live alone with community support [BMJ Best Practice, 2023].
    • Premature mortality rates are approximately twice as high among those with ASD compared with the general population, with mortality risk increased by coexisting neurological disorders or psychiatric illness. The risk of death by suicide among people with ASD, after accounting for sex and age,has been estimated to be approximately 4 times higher than the background population [Hirota, 2023].
    • Although outcomes are highly variable, autistic people may experience improvements as they transition into adulthood, with reductions in symptom severity, less severe impairment from ritualistic behaviours or sensory sensitivities, and improvements in social, communication, adaptive functioning and independence skills [Howlin, 2021].
  • The prognosis of ASD can be improved by early diagnosis and assessment. 
    • However, due to a wide variation in rates of identification and referral for diagnostic assessment, waiting times for diagnosis, models of multi-professional working, assessment criteria, and diagnostic practice for adults with features of ASD, many adults with suspected ASD have difficulties accessing a diagnostic assessment and subsequent access to appropriate services [NICE, 2021].
  • It is important to recognise that there may be individual differences in what constitutes a good social outcome or quality of life for people autistic people.
    • The criteria that define these outcomes should not be benchmarked against the general population (such as having a high level of social engagement, being at work, or living independently).
    • It has been suggested that outcome assessments should be based on measures of within-individual growth over time and progress on a wide range of variables and domains identified as meaningful by those living on the autism spectrum [Howlin, 2021].

Diagnosis of autism in adults

When should I suspect possible autism spectrum disorder in an adult?

  • The identification, assessment, and diagnosis of autism spectrum disorder (ASD) in adults is challenging because ASD can coexist with a number of mental health disorders, such as depression. In addition, the differential diagnosis can present difficulties.
  • Consider assessment for possible ASD when a person has:
    • One or more of the following:
      • Persistent difficulties in social interaction.
      • Persistent difficulties in social communication.
      • Stereotypic (rigid and repetitive) behaviours, resistance to change, or restricted interests.
    • And one or more of the following:
      • Problems in obtaining or sustaining employment or education.
      • Difficulties in initiating or sustaining social relationships.
      • Previous or current contact with mental health or learning disability services.
      • A history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.

Basis for recommendation

These recommendations are based on the National Institute for Health and Care Excellence (NICE) guidelines Autism. Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023] and Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], and expert opinion in narrative review articles [Huang, 2020; BMJ Best Practice, 2023]. For detailed information on the evidence NICE used to make these recommendations, see the full NICE guideline.

Signs and symptoms of autism

  • The NICE guideline development group (GDG) identified a number of signs and symptoms that were likely to have sufficient sensitivity and specificity to improve the identification of autism spectrum disorder in adults and prompt assessment where necessary [NICE, 2021; NCCMH, 2023].
  • Although adults with ASD may present to healthcare at any time or age, including older age, presentation may be more common at times of uncertainty, change, or stress (including, but not limited to, times of lifestyle transition or following bereavement). Symptoms of ASD may also be identified as a cause of difficulties at home, in social relationships or in the workplace, leading to healthcare presentations [BMJ Best Practice, 2023; NCCMH, 2023].
Diagnosis and assessment complexities
  • The assessment of adult autism is complex. Primarily, diagnosis requires knowledge of developmental history, which may not be available from childhood medical records and/or recall of developmental milestone attainment may be inaccurate. Additionally,  adults with autism may have learned to use coping strategies which reduce the impact of their autism on everyday functioning [Huang, 2020; NCCMH, 2023].

What else might it be?

  • Conditions that may present with similar features to autism spectrum disorder (ASD) in adults include:
    • Neurodevelopmental disorders, including:
      • Learning (intellectual) disability or global developmental delay — the delay is likely to be across all areas of development with imitation present, and social intent and interest consistent with their developmental age.
      • Stereotypic movement disorder — stereotypic movements are among the diagnostic characteristics of ASD. The diagnosis of stereotypic movement disorder is not made if the behaviour is better explained by ASD unless the behaviour causes injuries, in which case both diagnoses may be appropriate.
    • Mental health and behavioural disorders, including:
      • Attention deficit hyperactivity disorder — a behavioural syndrome characterized by hyperactivity, impulsivity, and inattention. See the CKS topic on Attention deficit hyperactivity disorder for more information.
      • Mood disorder — usually episodic events with a history of 'normal' social behaviour when not depressed or severely anxious.
      • Anxiety disorder — anxiety can be associated with repetitive behaviour but is not typically stereotyped. The person will also have an interest in, and care about, the opinions of others. See the CKS topic on Generalized anxiety disorder for more information.
      • Obsessive-compulsive disorder — characterized by recurrent obsessional thoughts or compulsive acts or, commonly, both, which may cause significant functional impairment and/or distress. See the CKS topic on Obsessive-compulsive disorder for more information.
      • Personality disorder — characterized by difficulty with forming social relationships and empathy deficits, but not involving the narrow interests or resistance to change that are typical for people with ASD.
      • Schizophrenia — hallucinations and/or delusions are defining features of the condition. See the CKS topic on Psychosis and schizophrenia for more information.
      • Social (pragmatic) communication disorder — characterized by impairment in social communication and social interactions. There are no restricted and repetitive behaviour or interests.
    • Other conditions, such as:
      • Communication difficulties (for example, speech and language problems and selective mutism).

Basis for recommendation

The information on the differential diagnoses of autism spectrum disorder (ASD) is taken from the National Institute for Health and Care Excellence (NICE) guidelines Autism. Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023], Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], Autism: recognition, referral and diagnosis of children and young people on the autism spectrum [NCCWCH, 2022], and Autism spectrum disorder in under 19s: recognition, referral and diagnosis [NICE, 2017]; the Scottish Intercollegiate Guidelines Network (SIGN) guideline Assessment, diagnosis and interventions for autism spectrum disorders [SIGN, 2016]; the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5 text revision) [APA, 2022]; and expert opinion in a narrative review article on ASD [BMJ Best Practice, 2023].

Management

Scenario: Managing suspected autism

From age 18 years onwards.

How should I manage an adult with suspected autism spectrum disorder?

  • For adults with possible autism spectrum disorder (ASD) who do not have a moderate or severe learning disability, consider using the Autism-Spectrum Quotient – 10 items (AQ-10) tool to help identify those who should be referred for further assessment. If the person has reading difficulties, read out the AQ-10.
    • If the person scores above six on the AQ-10, or ASD is suspected based on clinical judgement (taking into account any past history provided by an informant), offer referral to an autism team if available (or if not, to a psychiatrist) for a comprehensive (diagnostic, needs, and risks) assessment for ASD.
  • For adults with possible ASD who have a moderate or severe learning disability:
    • Consider a brief assessment to ascertain whether the following behaviours are present (if necessary, using information from a family member, partner, or carer):
      • Difficulties in reciprocal social interaction, including limited interaction with others (for example, being aloof, indifferent, or unusual); interaction to fulfil needs only; and interaction that is naive or one-sided.
      • Lack of responsiveness to others.
      • Little or no change in behaviour in response to different social situations.
      • Limited social demonstration of empathy.
      • Rigid routines and resistance to change.
      • Marked repetitive activities (for example, rocking and hand or finger flapping), especially when under stress or expressing emotion.
    • If two or more of the above categories of behaviour are present, offer referral to an autism team if available (or if not, to a psychiatrist) for a comprehensive (diagnostic, needs, and risks) assessment for ASD.
  • For all adults with possible ASD, consider a brief assessment (if necessary, using information from a family member, partner, or carer) to ascertain whether there is any behaviour that challenges, such as:
    • Stereotypic behaviour (such as rocking or hand flapping).
    • Anger or aggression.
    • Self-injury.
    • Disruptive or destructive behaviour.
  • Provide verbal and written information on ASD. For example:
    • The National Autistic Society website (www.autism.org.uk) has information on support available before diagnosis of ASD, the benefits of diagnosis, the diagnosis process, available services and next steps after diagnosis.

Basis for recommendation

These recommendations are based largely on the National Institute for Health and Care Excellence (NICE) guidelines Autism. Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023] and Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], and expert opinion provided in a narrative review [BMJ Best Practice, 2023]. For detailed information on the evidence NICE used to make these recommendations, see the full NICE guideline.

Adults with possible autism spectrum disorder (ASD) who do not have a moderate or severe learning disability
  • The NICE guideline development group (GDG) considered the sensitivity and specificity of the five versions of the Autism-Spectrum Quotient (AQ) questionnaire: the 50-item (AQ-50), the 21-item (AQ-21), the 20-item (AQ-20), and two versions of a 10-item questionnaire (AQ-10 [British] and AQ-10 [Japanese]) [NCCMH, 2023; NICE, 2021]:
    • The GDG judged that there were no important differences between the AQ-50 (cut-off at 32), AQ-20, and AQ-10 (British) in terms of sensitivity and specificity in populations with normal intellectual ability.
    • Because the AQ-10 takes only a brief time to administer (2 minutes) and requires no particular expertise in its administration or scoring, the GDG decided that the AQ-10 (British) would be appropriate for use in primary care, social care, and other non-specialist settings to support the decision to refer for a specialist assessment in people with ASD without a learning disability.
  • The NICE GDG favoured sensitivity over specificity in developing this recommendation [NCCMH, 2023].
Adults with possible ASD and moderate or severe learning disability
  • The NICE GDG did not identify any instruments to aid the brief assessment of people with suspected ASD and a learning disability. However, the GDG thought it was important to provide advice in this area, given that a significant proportion of adults with ASD (about 60%) have a learning disability [NCCMH, 2023; NICE, 2021]:
    • The GDG thought that a self-completion tool would not be feasible for a significant number of people with a learning disability and that a clinician-completed measure would be unlikely to be used routinely.
    • Therefore, the GDG drew on a review of existing diagnostic manuals and assessment schedules designed specifically for use in people with ASD and a learning disability, which enabled the GDG to identify a number of important indicators of ASD, including social interaction problems, lack of responsiveness to others, little or no response to social situations, lack of demonstrable empathy, rigidity of routine, and marked indication of stereotypies.
    • The GDG formulated these into a list of considerations that should comprise a brief assessment for ASD to be performed by health and social care professionals to support them in determining whether or not to refer for a specialist assessment.
  • The NICE GDG also favoured sensitivity over specificity in developing this recommendation [NCCMH, 2023].
  • There are numerous instruments available to aid a more comprehensive assessment of adults with learning disability, includingthe Autism Diagnostic Observation Schedule-Generic (ADOS-G) and the Autism Diagnostic Interview, Revised (ADI-R) [NCCMH, 2023; NICE, 2021].
Referral to a psychiatrist if an autism team is not available
  • The availability of autism teams varies locally. CKS has therefore based this recommendation on pragmatic considerations to allow referral, if needed, to other appropriate professionals.
Providing verbal and written information on ASD
  • The recommendation to provide verbal and written information on ASD is based on what CKS considers to be good clinical practice.

Scenario: Managing confirmed autism

From age 18 years onwards.

How should I manage an adult with confirmed autism spectrum disorder?

All healthcare professionals providing care and support for adults with autism spectrum disorder (ASD) should be familiar with the general principles of care, which include having an extensive understanding of the nature, development, and course of ASD; considering the impact of the practice environment, including noise, lighting, and proximity of others, on the person with ASD; and adjusting consultation techniques, including the duration and pacing of the consultation, to allow for communication and processing difficulties. People with ASD, and, if they consent, their family, partners, and/or carers should be involved in making informed decisions about their care.

  • Following confirmation of the diagnosis of autism spectrum disorder (ASD) in secondary care, if appropriate, offer a follow-up appointment to discuss the implications of the diagnosis, any concerns they have about the diagnosis, and any future care and support they may require.
    • The decision to routinely review the person in primary care (to ensure that they and their family, partners, and/or carers are coping well and receiving appropriate support) should be made on a case by case basis using clinical judgement.
    • Review in primary care may not be appropriate in all cases, for example in:
      • People who are under regular specialist review, or
      • People who are coping well with the current support they are receiving and are well informed on how to access additional support if needed.
  • Ensure that the person with ASD has access to appropriate psychosocial interventions, such as social learning or a structured leisure activity programme to improve social interaction and anger management interventions, where appropriate.  Other options include teaching about decision-making and problem-solving skills to decrease the chance of victimization, and individual supported employment programmes for those with ASD without a learning disability or with a mild learning disability, who are having difficulty obtaining or maintaining employment.
  • For those people with ASD and coexisting mental health disorders, offer appropriate pharmacological treatment, or refer to an appropriate specialist.
    • For people who have sleep problems see the CKS topic on Insomnia for more information. 
  • Do not use pharmacological, physical or dietary interventions for the management of core features of autism in adults.
  • Manage behaviour that challenges, if present. 
  • Ensure that the person with ASD and their family, partners, and/or carers are given verbal and written information on ASD and its management and information on local support groups.
  • Offer families, partners, and/or carers of adults with ASD an assessment of their own needs.
    • This should include:
      • Personal, social, and emotional support.
      • Support in their caring role, including respite care and emergency plans.
      • Advice on, and support in, obtaining practical support.
      • Planning of future care for the person with ASD.
    • When the needs of families, partners, and/or carers have been identified, provide information on, and facilitate contact with, a range of support groups, including those specifically designed to address the needs of families, partners, and/or carers of people with ASD.
    • Offer information, advice, training, and support to families, partners, and/or carers if they:
      • Need help with the personal, social, or emotional care of the family member, partner, or friend, or
      • Are involved in supporting the delivery of an intervention for their family member, partner, or friend (in collaboration with professionals).
    • The NHS website (www.nhs.uk) has information on Carer's assessments.
  • For additional sources of information on ASD for healthcare professionals, see the section on Information - healthcare professional.

Principles for working with adults with autism spectrum disorder and their families, partners, and/or carers

The National Institute for Health and Care Excellence (NICE) outlines the following principles for staff working with adults with autism spectrum disorder (ASD) and their families, partners, and/or carers. Core aspects of these recommendations include:

  • Developing good working relationships with people with ASD and their families, partner or carers by:
    • Offering support and care respectfully.
    • Addressing the person using the name and title they prefer.
    • Taking time to build a trusting, supportive, empathic, and non-judgemental relationship.
    • Aiming to promote the person's autonomy through encouraging active participation in decisions about care and support self-management.
  • Developing a high level understanding of ASD and its management, including the:
    • Nature, development and course of ASD.
    • Impact of ASD on personal, social, educational and occupational functioning.
    • Impact of the social and physical environment on ASD.
    • Impact of coexisting mental and physical disorders, and their management, on ASD.
    • Potential for discrepancy between intellectual functioning and adaptive functioning.
    • Local and national sources of information and support that are available for people ASD and their families, partner or carers.
    • Awareness of under-reporting and under-recognition of physical disorders in autistic people.
  • Supporting effective communication by:
    • Carefully considering any communication needs, including those arising from a learning disability, sight or hearing problems or language difficulties, and providing communication aids where appropriate.
    • Clearly explaining any clinical language and check that the person has understood the discussions.
    • Ensuring comprehensive information is provided to people with ASD, and where appropriate, their families, partner or carers, in a format which is suitable for their level of understanding.
    • Considering whether the person may benefit from access to a trained advocate.
  • Altering the physical environment in which autistic adults are assessed, supported and cared for, and where required, making adjustments to:
    • The amount of personal space given.
    • The use of visual supports.
    • Decoration, furnishings and lighting choices.
    • Noise levels.
  • Offering advice about the beneficial effects of a healthy diet and exercise.
  • Being sensitive to issues of sexuality, including asexuality and the need to develop personal and sexual relationships.
    • In particular, be aware that problems in social interaction and communication may lead to the autistic person misunderstanding another person's behaviour or to their possible exploitation by others.
  • Ensuring that adults with ASD who have caring responsibilities receive support to access the full range of mental and physical health and social care services.

Involving families, partners, and carers in the care of an adult with autism spectrum disorder

  • The National Institute for Health and Care Excellence (NICE) recommends that a discussion should be had with the adult with autism spectrum disorder (ASD) to ascertain if and how they want their families, partners, and/or carers to be involved in their care. During the discussions, any implications of the Mental Capacity Act (2005) as well as any communication needs the person may have should be considered.
    • If the person with ASD wants their family, partner, and/or carer(s) to be involved, NICE recommends that the clinician should encourage this involvement and:
      • Negotiate between the person with ASD and their family, partner, and/or carer(s) about confidentiality and sharing of information on an ongoing basis.
      • Explain how families, partners, and/or carers can help support the person with ASD and help with care plans.
      • Ensure that no services are withdrawn because of involvement of the family, partner, and/or carer(s), unless this has been clearly agreed with both the person with ASD and their family, partner, and/or carer(s).
    • If a person with ASD does not want their family, partners, and/or carer(s) to be involved in their care, NICE recommends that the clinician should:
      • Give the family, partner, and/or carer(s) verbal and written information on who they can contact if they are concerned about the person's care.
      • Be aware that people with ASD may be ambivalent or negative towards their family or partner. This may be for many different reasons, including a coexisting mental health disorder or prior experience of violence or abuse.

Role of secondary care

  • The diagnosis of autism spectrum disorder (ASD) is established by a specialist following referral. Ideally, this is carried out by an autism team if available (or if not, by a psychiatrist).
    • The autism team is a specialist community-based multidisciplinary team with the skills and competencies to carry out an autism diagnostic assessment and to communicate with people with suspected or known ASD (and with their family and/or carers) and sensitively share the diagnosis with them.
    • The autism team should include clinical psychologist, nurses, occupational therapists, psychiatrists, social workers, speech and language therapists, and support staff (for example, staff supporting access to housing, educational and employment services, financial advice, and personal and community safety skills).
  • The specialist autism team should have a key role in the delivery and coordination of:
    • Specialist diagnostic and assessment services
    • Specialist care and interventions.
    • Advice and training to other health and social care professionals on the diagnosis, assessment, care, and interventions for adults with ASD (as not all may be in the care of a specialist team).
    • Support in accessing, and maintaining contact with, housing, educational, and employment services.
    • Support to families, partners, and/or carers where appropriate.
    • Care and interventions for adults with ASD living in specialist residential accommodation.
    • Training, support, and consultation for staff who care for adults with ASD in residential and community settings.

Basis for recommendation

These recommendations are based largely on the National Institute for Health and Care Excellence (NICE) guidelines Autism. Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023] and Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], and are in line with recommendations in the Scottish Intercollegiate Guidelines Network (SIGN) guideline Assessment, diagnosis and interventions for autism spectrum disorders [SIGN, 2016] and expert opinion in narrative review articles [BMJ Best Practice, 2023; Hirota, 2023].

General management of adults with autism spectrum disorder (ASD), including principles of care

  • The NICE guideline development group (GDG) reviewed primary qualitative studies and surveys reporting experiences of adults with autism spectrum disorder (ASD) and/or their families, partners, and carers, to identify the emerging themes for their experiences in terms of the experience of ASD, of accessing services, and of treatment [NCCMH, 2023; NICE, 2021]. Several themes were identified and are discussed in the full NICE guideline. The NICE GDG also reviewed the evidence in the NICE guideline on Service user experience in adult mental health to identify important areas where a recommendation needed to be developed for the NICE autism guideline [NCCMH, 2023; NICE, 2021].
    • NICE based the principles of care for adults with ASD on evidence from this review, evidence in the NICE guideline on Service user experience in adult mental health and in other NICE guidelines for people with long-term disorders, and the expert knowledge and experience of the GDG. For detailed information on the evidence NICE used to make these recommendations, see the full NICE guideline.

Psychosocial interventions

  • NICE recommends that all health and social care professionals providing care and support for adults with ASD should ensure that comprehensive information about the nature of, and interventions and services for, their difficulties is available in an appropriate language or format [NICE, 2021]. Based on this recommendation, CKS recommends ensuring that adults with ASD have access to appropriate psychosocial interventions for managing core symptoms and for improving life skills.
  • NICE recommends considering the following psychosocial interventions for adults with ASD (detailed information on each intervention, and the evidence for each intervention, is available in the full NICE guideline) [NICE, 2021]:
    • For adults with ASD without a learning disability or with a mild to moderate learning disability, who have identified problems with social interaction:
      • A group-based social learning programme focused on improving social interaction, or
      • An individually delivered social learning programme for people who find group-based activities difficult.
    • For adults with ASD of all ranges of intellectual ability, who need help with activities of daily living:
      • A structured and predictable training programme based on behavioural principles.
    • For adults with ASD without a learning disability or with a mild to moderate learning disability, who are socially isolated or have restricted social contact: 
      • A group-based structured leisure activity programme, or
      • An individually delivered structured leisure activity programme for people who find group-based activities difficult.
    • For adults with ASD without a learning disability or with a mild to moderate learning disability, who have problems with anger and aggression:
      • An anger management intervention adjusted to the needs of adults with ASD. 
    • For adults with ASD without a learning disability or with a mild learning disability, who are at risk of victimization:
      • Anti-victimization interventions based on teaching decision-making and problem-solving skills.
    • For adults with ASD without a learning disability or with a mild learning disability, who are having difficulty obtaining or maintaining employment:
      • An individual supported employment programme.
  • It is noted that high-quality evidence on the effectiveness of these psychosocial interventions may be limited or lacking [BMJ Best Practice, 2023].
  • Treatments not recommended:
    • Based on a lack of evidence for significant benefits and concerns regarding potentially significant harms, NICE does not recommend facilitated communication interventions for adults with ASD.
    • Based on a lack of evidence (overall or for benefits), NICE does not recommend [NICE, 2021]:
      • The following biomedical (pharmacological, physical, and dietary) interventions for the management of core symptoms of ASD in adults: anticonvulsants;  antipsychotics; chelation; exclusion diets (such as gluten- or casein-free and ketogenic diets); vitamins, minerals and dietary supplements (such as vitamin B6 or iron supplementation); drugs specifically designed to improve cognitive functioning (for example, cholinesterase inhibitors); oxytocin; secretin; testosterone regulation; and hyperbaric oxygen therapy.
      • Antidepressants for the routine management of core symptoms of ASD in adults.
      • Drugs specifically designed to improve cognitive functioning (for example, cholinesterase inhibitors) for the routine management of associated cognitive or behavioural problems in adults with ASD.
    • For detailed information on the evidence NICE used to make these recommendations, see the full NICE guideline.
    • There is a lack of robust evidence that lifestyle alterations (such as nutritional supplements, or diet alterations/exclusions) can improve core features of ASD [BMJ Best Practice, 2023; Hirota, 2023].

Coexisting mental health disorders

  • Symptoms of attention deficit hyperactivity disorder (ADHD) are common in people with ASD, with an estimated prevalence of 30-50%. Difficulties with listening and concentrating are common features of ADHD which could exacerbate social problems experienced by people with autism, and further add to social anxiety, while difficulties with executive function could reinforce low self-esteem and low mood. Early identification and intervention for ADHD could make a dramatic difference to many patients with ASD [Leaver, 2023].

How should I manage behaviour that challenges in an adult with autism spectrum disorder?

Behaviour that challenges is a term used to describe behaviour that occurs as a result of interaction with environmental factors, and includes physical, emotional or self-injurious behaviour which affects the person's or other people's quality of life and/or jeopardises their safety.

  • Consult the care plan (if available) for any advice on managing behaviour that challenges.
  • Assess for and manage (where possible):
    • Coexisting physical illness, such as gastrointestinal disorders and chronic pain.
    • Coexisting mental health disorders, for example, anxiety, depression, or schizophrenia. See the CKS topics on Generalized anxiety disorder, Depression, and Psychosis and schizophrenia for management information.
    • Communication problems with difficulty in understanding situations or expressing needs and wishes.
      • Visual aids (such as words, pictures, or symbols) can help with communication. The National Autistic Society website (www.autism.org.uk) has information on visual supports for people with autism spectrum disorder (ASD). 
    • Changes to routine or personal circumstances that may trigger or maintain the behaviour that challenges.
    • Other risk factors for behaviour that challenges including pain, changes to the person's usual routine, or mistreatment or abuse by others.
  • Offer interventions aimed at changing the physical or social environment (for example, who the person lives with) when problems are identified, such as advice to the family, partner, or carer(s), or changes or accommodations to the physical environment. 
    • Advise that, if necessary, adjustments or adaptations should be made to the following:
      • Amount of personal space given (at least an arm's length).
      • Setting (using visual supports, such as labels with words or symbols to provide visual cues about expected behaviour).
      • Colour of walls and furnishings (avoid patterns and use low-arousal colours such as cream).
      • Noise levels (reduce external sounds or advise use of earplugs or ear defenders). 
      • Lighting (reduce fluorescent lighting, use blackout curtains or advise use of dark glasses or increase natural light).
    • The National Autistic Society website (www.autism.org.uk) has:
  • If behaviour that challenges persists despite the above measures, refer to the autism team if available (if not, to a psychiatrist) for consideration for psychosocial intervention and, if indicated, pharmacological treatment with an antipsychotic drug.
    • Be aware that pharmacological treatment for behaviour that challenges:
      • Should be considered in conjunction with a psychosocial intervention for challenging behaviour when there has been no or limited response to psychosocial or other interventions (such as environmental adaptations). 
      • Should be prescribed by a specialist and quality of life outcomes monitored carefully. The effects of the treatment should be reviewed after 3–4 weeks and treatment discontinued if there is no indication of a clinically important response at 6 weeks.
      • May be continued in primary care under a shared care protocol with clear instructions from the specialist regarding the target behaviour, suggested duration of treatment, plans for stopping, the potential for minimal effective dosing, and how to monitor for beneficial or adverse effects.

Basis for recommendation

These recommendations are based largely on the National Institute for Health and Care Excellence (NICE) guidelines Autism. Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023] and Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], and are in line with recommendations in the Scottish Intercollegiate Guidelines Network (SIGN) guideline Assessment, diagnosis and interventions for autism spectrum disorders [SIGN, 2016] and expert opinion from narrative review articles [Im, 2021; BMJ Best Practice, 2023].

Managing behaviour that challenges
  • NICE recommends that before interventions are initiated for behaviour that challenges, any identified factors that may trigger or maintain the behaviour, such as a coexisting physical illness or mental health disorder, communication problems, and/or changes to routine, personal circumstances, and the physical or social environment, should be addressed [NCCMH, 2023; NICE, 2021].
    • The suggested interventions aimed at changing the physical or social environment are based on the NICE guideline [NICE, 2021].
  • If behaviour that challenges persists despite these measures, NICE recommends that psychosocial intervention for the challenging behaviour should be offered first [NCCMH, 2023; NICE, 2021].
    • This should include:
      • Clearly identified target behaviour(s).
      • A focus on outcomes that are linked to quality of life.
      • Assessment and modification of environmental factors that may contribute to initiating or maintaining the behaviour.
      • A clearly defined intervention strategy.
      • A clear schedule of reinforcement, and capacity to offer reinforcement promptly and contingently on demonstration of the desired behaviour.
      • A specified timescale to meet intervention goals (to promote modification of intervention strategies that do not lead to change within a specified time).
      • A systematic measure of the target behaviour(s) taken before and after the intervention to ascertain whether the agreed outcomes are being met.
  • If there is no (or limited) response to psychosocial or other interventions (such as environmental adaptations), antipsychotic drugs should be considered.
    • NICE based this recommendation on limited, low-quality evidence on the efficacy of antipsychotics in the management of behaviour that challenges and on the fact that antipsychotics have been widely used to treat behaviour that challenges in people with Autism Spectrum Disorder (ASD) [NCCMH, 2023; NICE, 2021].
    • The NICE GDG and SIGN guideline both highlight that the treatment should be prescribed by a specialist and quality of life outcomes monitored carefully. The effects of the treatment should be reviewed after 3–4 weeks and treatment discontinued if there is no indication of a clinically important response at 6 weeks [SIGN, 2016; NCCMH, 2023].
    • NICE highlights that antipsychotics were unlicensed for the management of behaviour that challenges at the time that the guideline was originally produced. CKS has not identified any antipsychotics licensed for the management of behaviour that challenges in people with autism [NICE, 2021].
  • For detailed information on the evidence NICE used to make these recommendations, see the full NICE guideline.
Managing aggression in adults with ASD
  • Maladaptive behaviour, such as aggression, can disrupt functioning and quality of life in people with ASD, can result in harm to others or to the individual with ASD, may hinder educational, employment, or housing opportunities, and can result in involvement with the criminal justice system [Im, 2021].
  • Preliminary evidence supporting the efficacy of risperidone in managing aggression in adults with ASD is provided from data from 8 randomized trials. Similar evidence is available for propranolol, fluvoxamine, vigorous aerobic exercise, and dextromethorphan/quinidine, with data from 1 randomized trial for each intervention [Im, 2021].
  • More limited evidence (from non-randomized, open label or observational studies) has suggested possible benefits for adults with ASD in managing aggression with behavioural interventions, access to multisensory environments, yokukansan (a Japanese herbal preparation), clomipramine, sertraline, clozapine and aripiprazole [Im, 2021].
Referral to a psychiatrist if an autism team is not available
  • The availability of autism teams varies locally. CKS has therefore based this recommendation on pragmatic considerations to allow referral, if needed, to other appropriate professionals.

Sources of information for healthcare professionals

Supporting evidence

This CKS topic is based largely on the National Collaborating Centre for Mental Health (NCCMH) guidelines Recognition, referral, diagnosis and management of adults on the autism spectrum (full NICE guideline) [NCCMH, 2023] and Autism spectrum disorder in adults: diagnosis and management [NICE, 2021], which are in line with recommendations in the Scottish Intercollegiate Guidelines Network (SIGN) guideline Assessment, diagnosis and interventions for autism spectrum disorders [SIGN, 2016] and expert opinion from several narrative review articles Assessment, Genetics, and Treatment Approaches in Autism Spectrum Disorder (ASD) [Genovese, 2020], Diagnosis of autism in adulthood: A scoping review [Huang, 2020], Adults with Autism: Changes in Understanding Since DSM-111 [Howlin, 2021], Autism spectrum disorder [BMJ Best Practice, 2023] and Autism Spectrum Disorder: A Review [Hirota, 2023].

How this topic was developed

This section briefly describes the processes used in developing and updating this topic. Further details on the full process can be found in the About Us section and on the Clarity Informatics website.

Search strategy

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

Search dates

May 2019 - May 2024

Key search terms

The terms listed below are the core search terms that were used for EBSCOhost MEDLINE (searched 7th May 2019). These were combined with filters to identify guidelines, systematic reviews and primary care relevant literature in EBSCOhost MEDLINE. The strategy was adapted for The Cochrane Library databases. 

S3    S1 OR S2 
S2    AB ( autism or autistic or asperger* ) OR TI ( autism or autistic or asperger* ) 
S1    (MH "Autism Spectrum Disorder+") 

Sources of guidelines

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

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

Sources of national policy

Patient experiences

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.

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.

References

  • APA (2022) Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR). American Psychiatric Association. https://dsm.psychiatryonline.org [Free Full-text]
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  • BMJ Best Practice (2023) Autism spectrum disorder. British Medical Journal (BMJ). https://bestpractice.bmj.com [Free Full-text]
  • Buckley, C. (2017) Autism in adults. InnovAiT 10(6), 319-326. [Abstract]
  • Genovese, A. and Butler, M.G. (2020) Clinical Assessment, Genetics, and Treatment Approaches in Autism Spectrum Disorder (ASD). International Journal of Molecular Sciences 21(13), 4726-4743. [Abstract] [Free Full-text]
  • Hirota, T. and King, B.H (2023) Autism Spectrum Disorder: A Review. JAMA 329(2), 157-168. [Abstract]
  • Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., et al. (2016) Premature mortality in autism spectrum disorder. British Journal of Psychiatry 208(3), 232-238. [Abstract]
  • Hollocks, M.J., Lerh, J.W., Magiati, I., et al. (2019) Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological Medicine 49(4), 559-572. [Free Full-text]
  • Howes, O., Rogdaki, M., Findon, J. and Wichers, R.H. (2018) Autism spectrum disorder: consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology. Journal of Psychopharmacology 32(1), 3-29. [Free Full-text]
  • Howlin, P. (2021) Adults with Autism: Changes in Understanding Since DSM-111. Journal of autism and developmental disorders 51(12), 4291-4308. [Abstract] [Free Full-text]
  • Huang, Y., Arnold, S.R. and Foley, K.R. Trollor, J.N. (2020) Diagnosis of autism in adulthood: A scoping review. Autism 24(6), 1311-1327. [Abstract]
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