Surveillance decision

Surveillance decision

We received a large volume of comments during consultation about implementing some of the recommendations in the guidelines highlighting that service capacity issues are affecting implementation. We are aware of several initiatives in progress to address these service capacity issues including work by NHS England and NHS Improvement (NHSE&I).

During this surveillance review we did not identify scientific evidence that suggested guideline recommendations do not represent best practice therefore we will not update the following guidelines on autism at this time:

Due to the number of initiatives underway that may impact on future service delivery, we will use a living surveillance model to monitor their progress and review their impact on the autism guidelines on an ongoing basis. This includes assessing the impact of the following when they publish in line with the surveillance process for reacting to events:

Additionally, we will make the following amendments to refresh the guidelines:

  • amend the language used in the recommendations that describe autistic people and the signs of autism spectrum disorder (ASD)

  • make an editorial amendment to the NICE guideline on autism in under 19s: identification and diagnosis, highlighting the existing recommendation, to be aware that underdiagnosis in females can be an issue

  • add a recommendation to the NICE guideline on autism spectrum disorder in under 19s: support and management, about assessing and providing support for feeding difficulties, including restrictive diets

  • add the wording 'consider using melatonin' to recommendation 1.7.7 in the NICE guideline on autism spectrum disorder in under 19s: support and management, about managing insomnia.

Reasons for the decision

We considered new evidence from published literature, policies, guidelines, topic experts, patient groups and stakeholders and we did not identify any that suggested guideline recommendations do not currently represent best practice.

Service delivery

We received a strong signal from topic experts and stakeholders that there are problems implementing recommendations because of service capacity issues. These issues were also reported in the government's autism self-assessment framework, which reviews progress in implementing the autism strategy. The DHSC and Department for Education are currently carrying out a review of the 2014 autism strategy 'Think Autism' and the revised strategy is expected to support the NHS Long Term Plan, which includes initiatives to improve outcomes in autistic people. We will monitor the review and assess its impact on recommendations when it publishes. We will discuss the implementation issues highlighted with NICE's implementation team.

One stakeholder responded that they thought the surveillance review had misinterpreted the policy context in light of new work by NHSE&I and other organisations. We received stakeholder comments from 2 charities: Autistica and the National Autistic Society and we had discussions with NHSE&I, whose role is to support the NHS to deliver improved care. The stakeholders and NHSE&I expressed concern that recommendations are 'at odds' with autism pathway improvements NHSE&I are currently developing to address NHS Long Term Plan objectives, and they thought this may cause confusion for commissioners. NHSE&I highlighted 2 projects relevant to their work:

The SHAPE study published post-consultation of this review, at which point we assessed the findings against recommendations in the NICE guideline on autism spectrum disorder in adults: diagnosis and management. The study reported improvements in mental health for people attending Specialist Autism Team (SAT) services that combine diagnostic and support services. These results are broadly supportive of recommendations 1.1.13 and 1.1.14, which recommend the formation of SATs and outline their key functions, including delivering and coordinating diagnostic services, interventions and other support services. The Re-ASCed study is ongoing, and we will assess its impact on the NICE guideline on autism spectrum disorder in under 19s: recognition, referral and diagnosis when it publishes. We did not identify any other evidence relating to the current work by NHSE&I or their collaborators during surveillance. We will monitor the impact of these outputs on recommendations within the NICE autism guidelines in a timely manner.


A number of stakeholders commented that the language used in the guidelines and surveillance review was ableist, medicalised and misconceptualised ASD. We will make the following editorial amendments to address this:

  • In all guidelines we will replace 'people with autism' with 'autistic people', which is in line with the NICE style guide.

  • In the NICE guideline on autism spectrum disorder in under 19s: recognition, referral and diagnosis, where it is appropriate to do so, we will use 'features suggesting possible autism' in line with the language used in ICD-11 instead of 'signs and symptoms' of autism, when referring to suspected presentations of autism.

  • In the NICE guideline on autism spectrum disorder in adults: diagnosis and management, we will add the phrase 'behaviour that challenges' in place of 'challenging behaviour' because it is more appropriately person-centred and consistent with other NICE guidelines.

  • We will provide a link to making decisions about your care from the recommendations sections of all 3 guidelines as this describes how NICE recommendations can help with shared decision making.


We identified evidence for the effectiveness of melatonin for insomnia in autistic children and noted it is licensed for use with this group as described by the British National Formulary for Children (BNFc). Additionally, recommendation 1.11.2 in the NICE guideline on challenging behaviour and learning disabilities recommends 'consider melatonin for sleep problems.' We asked stakeholders as part of this consultation 'do you think it is appropriate for recommendation 1.7.7 in the NICE guideline on autism spectrum disorder in under 19s: support and management to be amended to include: 'If medication is needed to aid sleep, consider melatonin?' Twelve stakeholders responded and agreed with this proposal but cautioned that this should only be after non-pharmacological strategies have been tried. Current recommendations accommodate this approach. Recommendation 1.7.7 recommends do not use a pharmacological intervention to aid sleep unless a sleep plan has failed, and sleep problems are having a negative impact.

We will add 'consider melatonin' to recommendation 1.7.7 and remove the research recommendation on managing sleep problems, as this update now addresses that issue.

Autism Spectrum Quotient – 10 items

During the development of the surveillance review, topic experts and patient groups highlighted issues with the validity of the Autism Spectrum Quotient – 10 items (AQ-10) screening tool. We identified a study (Ashwood et al. 2016) that reported a 64% false negative rate in adults with suspected ASD. We consulted with stakeholders about how they used the AQ-10 in order to check the interpretation of recommendation 1.2.3 in the NICE guideline on autism spectrum disorder in adults: diagnosis and management, which recommends that the AQ-10 can be considered for screening adults without a moderate or severe learning disability, and if they score above 6, or autism is suspected based on clinical judgement, to refer for assessment. Stakeholders confirmed that, in line with the current recommendation, they would not use the AQ-10 alone to screen for autism. Stakeholders also said that the AQ-10 can be unreliable. Based on these findings we will not amend recommendation 1.2.3 at this time as further research is required. However, we have flagged AQ-10 reliability and validity as an area to look for evidence at the next surveillance review timepoint.

We will highlight research recommendation 1 in the NICE guideline on autism spectrum disorder in under 19s: recognition, referral and diagnosis about training professionals to recognise the features of possible autism to the National Institute for Health Research (NIHR) as an area where research is needed. We will also promote this research recommendation via NICE's social media channels.

Outside of this surveillance review an article (Waldren et al. 2021) was brought to our attention that reported that the cut-off point of above 6 (i.e. 7) in recommendation 1.2.3 was incorrect. The authors suggested that the correct cut-off point should be 6 or above (i.e. 6) as reported in Allison et al. 2012, which informed the development of recommendation 1.2.3. We have confirmed that this is an error that we will correct.

Mental health

Several topic experts and patient groups noted that autistic people are frequently admitted for inpatient psychiatric care. Five stakeholders also made comments about inadequate mental health provision and indicated that recommendations about mental health in all 3 guidelines could be improved.

A number of stakeholders highlighted the work of NHS England's Transforming care programme, and provided prevalence evidence that used data from the programme's Assuring transformation dataset. This programme aims to reduce hospitalisations and institutionalisation of autistic people and those with learning disabilities. Whilst we acknowledge the dataset does show an upward trend in mental psychiatric admissions for this group, we did not identify any studies from the programme that we could assess for impact on recommendations. During surveillance we identified policy reports that reported this issue, for example the Parliamentary Joint Select Committee report on the detention of young people with learning disabilities and/or autism. We also identified initiatives in the NHS Long Term Plan designed to address this issue. However, we did not identify any evidence to indicate that NICE recommendations, no longer represent best practice, but rather services have not been able to achieve recommended best practice.

Impact of COVID-19

We asked stakeholders about the impact of COVID-19 on services and received responses from 19 stakeholders across the 3 consultations. Stakeholders highlighted that there is uncertainty over the risks and benefits of telepsychiatry, telemedicine and virtual consultations; and that personal protective equipment acted as a barrier to communication. We did not identify any evidence about these issues during surveillance, but we expect that this evidence will emerge in the near future, and we will consider any necessary changes at the appropriate time.

A number of stakeholders highlighted that uncertainty associated with the pandemic was impacting autistic people's mental health, an issue compounded by reduced access to services. We plan to look at all the mental health guidelines in NICE's portfolio together in order to explore the implications of system drivers, including the impact of COVID-19 on service delivery and on our recommendations.

For further details and a summary of all evidence identified in surveillance, see appendix A.

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