NICE summary
The recommendations in this Best Practice topic are based on authoritative international guidelines, supplemented by recent practice-changing evidence and expert opinion. For your added benefit, we summarise below the key recommendations from relevant NICE guidelines.
Key NICE recommendations on diagnosis
Autism spectrum disorders (autism, Asperger’s syndrome and atypical autism/pervasive developmental disorder not otherwise specified) are referred to as ‘autism’ in this summary.
The diagnosis of autism is made following formal diagnostic assessment by a specialist multidisciplinary team (e.g., the autism team).[12][104]
Information from all sources should be used, together with clinical judgement, to diagnose autism based on ICD-11 or DSM-5 criteria.[12]
Under 19s
Consider autism if there are concerns about development or behaviour. Consider features in context of overall development. Individual features may have other explanations.[12]
Always take parent/carer concerns, and (if appropriate) concerns of the child/young person, seriously, even if these are not shared by others, but also be aware that they (and other professionals) may not have recognised features.[12]
When considering the possibility of autism, be aware that:[12]
Autism may be under-recognised in girls (leading to underdiagnosis)
Autism may be missed in children or young people with a learning (intellectual) disability, or in children or young people who are verbally able
When older children or young people present for the first time with possible autism, features may have previously been masked by their coping mechanisms and/or a supportive environment
It should not be assumed that language delay is accounted for by early hearing difficulties or because English is not the family’s first language. Ask about the child or young person’s use and understanding of their first language
Important information about early development may not be readily available (e.g., for children/young people who are looked-after/adopted or in the criminal justice system)
Features may not be accounted for by disruptive home experiences or parental/carer mental or physical illness.
Use the Appendix in the NICE guideline to help you identify features suggesting possible autism in under 19s. Do not rule out autism if the exact features described in the Appendix are not evident, or because of:[12]
Good eye contact, smiling and showing affection to family
Reported pretend play or normal language milestones
Difficulties appearing to resolve after a needs-based intervention (e.g., a supportive structured learning environment)
A previous assessment concluding no autism, if new information becomes available.
Do not rely on any diagnostic tool alone to diagnose autism (and if used, note that a positive score does not diagnose autism and a negative score does not rule it out).[12]
Be critical about your competence when considering possible autism and autism team referral. Seek advice if in doubt. When considering referral, assess for and consider:[12]
Severity/duration of features, extent these are present in different settings, impact of these on the person/family/carers and the level of people’s concerns
Alternative diagnoses, and factors associated with increased prevalence of autism.
Refer children/young people:[12]
To the autism team if they are under 3 years with language or social skills regression
To a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) if they are older than 3 years with language regression, or of any age with motor skills regression.
Consider referral to the autism team if you are concerned about possible autism, or consider consulting the autism team for advice (or referring to another service) if unsure.[12]
Consider a period of watchful waiting if you do not think concerns are sufficient for a referral (or if the parents/carers or if appropriate, the child/young person, prefer not to be referred to the autism team). Reconsider referral if you remain concerned about autism.[12]
Adults
Consider assessment for possible autism when an adult has:[104]
One or more of the following core features of autism:
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 obtaining/sustaining employment/education
Difficulty initiating/sustaining social relationships
Previous/current contact with mental health or learning disability services
History of a neurodevelopmental condition or mental disorder.
Be aware of the potential discrepancy between intellectual functioning (i.e., IQ) and adaptive functioning (e.g., difficulty planning/performing daily activities such as employment).[104]
Consider using the ‘Autism-Spectrum Quotient - 10 items’ (AQ-10) for adults with possible autism who do not have a moderate or severe learning disability.[104]
If there is a moderate or severe learning disability, consider a brief assessment to determine the presence of the following categories of behaviour (using information from an informant [e.g., family member, partner, carer] if needed):[104]
Difficulties in reciprocal social interaction (e.g., interaction that is limited [e.g., aloof, indifferent, unusual], naive or one-sided, or interaction to fulfil needs only)
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 (e.g., rocking and hand or finger flapping), especially when under stress or expressing emotion.
Offer a comprehensive assessment for autism (via the autism team) if:[104]
The person scores 6 or above on the AQ-10
Autism is suspected based on clinical judgement (taking into account any past history provided by an informant)
A brief assessment identifies the presence of 2 or more categories of behaviour.
Links to NICE guidance
Autism spectrum disorder in adults: diagnosis and management (CG142) June 2021. https://www.nice.org.uk/guidance/cg142
Autism spectrum disorder in under 19s: recognition, referral and diagnosis (CG128) December 2017. https://www.nice.org.uk/guidance/cg128
Key NICE recommendations on management
Please be aware that some of the following indications for medications may not be licensed by the manufacturer (i.e., the use of the medication is ‘off-label’). Refer to the full NICE guideline and your local drug formulary for further information when prescribing.
The autism team should have a key role in delivery and coordination of specialist care (including assessments and interventions), advising other professionals (e.g., through a care plan), and supporting autistic people and their families/carers. See the NICE guidelines for more information on the role of the autism team.[104][189]
Risks to, and from, the person should be assessed (including during diagnostic assessment) and a risk management plan should be developed if needed.[104]
Make adjustments or adaptations to the physical environment in which autistic people are cared for if necessary (e.g., lighting/noise levels, consultation duration).[104][189]
Coexisting mental disorders and medical problems (including sleep or feeding problems [e.g., restricted diets]) should be identified and appropriately managed. Be aware of under-reporting and under-recognition of physical disorders in autism.[104][189]
Coexisting mental disorders should be treated by a professional with an understanding of autism and its possible impact on the treatment of coexisting mental disorders. Consider seeking advice from a specialist autism team.[104]
Consider the greater risk in autism of altered sensitivity/unpredictable responses to medication when considering medication. Consider starting at a low dose.[104]
See the NICE guidelines for more information on interventions for coexisting problems in autistic people (including sleep and feeding problems in under 19s).[104][189]
In under 19s, do not use:[189]
Anticonvulsants, antipsychotics, antidepressants, or exclusion diets (e.g., gluten- or casein-free) to manage core features of autism
Secretin, chelation, or hyperbaric oxygen therapy to manage autism in any context
Neurofeedback or auditory integration training for speech and language problems
Omega-3 fatty acids to manage sleep problems.
In adults, do not:[104]
Use any of the following to manage core features of autism: exclusion diets (e.g., gluten- or casein-free and ketogenic diets); vitamins, minerals and dietary supplements (e.g., vitamin B6, iron); drugs specifically designed to improve cognitive functioning (e.g., cholinesterase inhibitors); anticonvulsants; antipsychotic medication; chelation; secretin; oxytocin; testosterone regulation; hyperbaric oxygen therapy
Use antidepressant medication for routine management of core features of autism
Routinely use anticonvulsants for management of behaviour that challenges
Use drugs specifically designed to improve cognitive functioning routinely for associated cognitive or behavioural problems.
Psychosocial interventions
In under 19s:[189]
A specific social-communication intervention (including play-based strategies and adjusted to developmental level) should be considered for core features of autism
Support should be offered in developing coping strategies and skills for accessing community services (e.g., public transport, employment, leisure).
In adults:[104]
A social learning programme focused on improving social interaction (group-based, or if the person finds this difficult, individually delivered) should be considered for those with social interaction problems (including adults with a mild to moderate learning disability)
Life skill-specific interventions (e.g., for activities of daily living, isolation/restricted social contact, anger/aggression, anti-victimisation, employment) should be considered (and adjusted) based on needs and intellectual ability.
Do not provide facilitated communication for autistic adults.[104]
Managing behaviour that challenges
When behaviour is challenging, assess for any factors that may trigger or maintain the behaviour (e.g., coexisting disorders, the physical/social environment, lack of/changes to routine, communication problems, puberty, exploitation/abuse; include reassessment of any previously identified factors [e.g., in the person’s care plan], if available).[104][189]
Offer the following to address any identified factors that may trigger or maintain the behaviour that challenges:[104][189]
Treatment for coexisting physical or mental disorders or behavioural problems
Interventions aimed at changing the person’s physical or social environment (e.g., who they live with), such as advice to the family/carers, or changes to the physical environment (e.g., providing visual supports; modifying lighting, noise levels, colour of walls/furnishings, and amount of personal space given).
If no coexisting physical/mental disorder or behavioural/environmental problem has been identified as triggering or maintaining the behaviour that challenges, or if behaviour remains challenging despite attempts to address the underlying possible causes, further interventions may be used, such as:[104][189]
Psychosocial intervention (first-line; informed by a functional analysis of behaviour)
Antipsychotic medication (may be prescribed by a specialist if psychosocial/other interventions are insufficient or cannot be delivered due to behaviour severity).
© NICE (2017) (2021) All rights reserved. Subject to Notice of rights NICE guidance is prepared for the National Health Service in England https://www.nice.org.uk/terms-and-conditions#notice-of-rights. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.
Links to NICE guidance
Autism spectrum disorder in adults: diagnosis and management (CG142) June 2021. https://www.nice.org.uk/guidance/cg142
Autism spectrum disorder in under 19s: support and management (CG170) June 2021. https://www.nice.org.uk/guidance/cg170
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