Surveillance decision

Surveillance decision

We will plan an update of the following sections of the guideline on autism spectrum disorder in under 19s: recognition, referral and diagnosis (NICE guideline CG128):

  • Referring children and young people to the autism team.

  • Autism diagnostic assessment for children and young people.

We will not update the guideline on autism spectrum disorder in under 19s: support and management (NICE guideline CG170).

Reason for the decision

Autism spectrum disorder in under 19s: recognition, referral and diagnosis (NICE guideline CG128)

We found 259 new studies through surveillance of this guideline.

New evidence that could affect recommendations was identified. Topic experts, including those who helped to develop the guideline, advised us about whether the following sections of the guideline should be updated:

Referring children and young people to the autism team

Risk factors
  • Do the following risk factors increase the likelihood of a diagnosis of autism and assist in the decision to refer for a formal autism diagnostic assessment?

    • Small for gestational age.

    • Prenatal use of selective serotonin reuptake inhibitors (SSRIs).

    • Fertility treatments.

Through surveillance, a vast amount of evidence was identified evaluating different risk factors. Most of the studies reported an odds ratio of more than 1.25 for the risk factors, which was considered as clinically important by the guideline committee during the development of NICE guideline CG128. Topic experts recommended that this review question should be updated and that any update should be limited to consider a small number of relevant risk factors.

Decision: This review question should be updated.

Conditions with an increased risk of autism
  • Do neurodevelopmental disorders (such as attention deficit hyperactivity disorder [ADHD] and intellectual disability [ID]) increase the likelihood of a diagnosis of autism and assist in the decision to refer for a formal autism diagnostic assessment?

Topic experts also raised the issue of delays in diagnosis of autism spectrum disorders (ASD) of 3–4 years because of an earlier diagnosis of neurodevelopmental disorders such as ADHD. The panel agreed that it was important for clinicians to not exclude a diagnosis of ASD in a patient with a diagnosis of ADHD. Topic experts recommended updating the conditions with an increased risk of autism to include neurodevelopmental disorders and gave examples such as ADHD and ID.

Decision: This review question should be updated.

Autism diagnostic assessment for children and young people
  • How should information be integrated to arrive at diagnosis?

    • What is the agreement of an autism diagnosis across different diagnostic tools?

At the 4‑year surveillance review it was considered that there was variable evidence showing agreement across the different tools. During guideline development, the guideline committee did not consider any evidence comparing agreement between diagnostic tools due to the low quality of evidence relating to accuracy. Due to heterogeneity between studies identified through the surveillance review, it was felt unlikely that there was sufficient evidence to make any recommendations in this area.

The cumulative evidence identified through the surveillance showed that a diagnosis of ASD is less common with the Diagnostic and Standard Manual version 5 (DSM-5) than with version IV (DSM-IV) or the text revision version (DSM-IV-TR). The current guidance refers to DSM-IV as one of the diagnostic assessments. However, the DSM-IV was updated in 2013 and the new version (DSM-5) supersedes DSM-IV. Therefore, this evidence may have an impact on recommendations 1.5.5, 1.5.10, and 1.5.13, which refer to the DSM-IV criteria. Topic experts agreed that the terminology used in the guideline needed to be updated to reflect DSM-5 as it is being used in practice.

Decision: This review question should not be updated but the panel recommended that the terminology in the guideline should be amended to reflect the updated DSM-5 (recommendations 1.5.5, 1.5.10 and 1.5.13).

Autism spectrum disorder in under 19s: support and management (NICE guideline CG170)

We found 51 new studies through surveillance of this guideline.

This included new evidence that supports current recommendations on:

  • General principles of care (access to health and social care services, knowledge and competence of health and social care professionals, information and involvement in decision-making).

  • Families and carers.

  • Specific interventions for the core features of autism.

  • Interventions for behaviour that challenges.

  • Interventions for life skills.

  • Interventions aimed at improving the impact on the family.

  • Interventions for autism that should not be used.

  • Interventions for coexisting problems.

  • Transition to adult services.

We asked topic experts whether this new evidence would affect current recommendations on autism spectrum disorder in under 19s. Generally, the topic experts thought that an update was not needed. A topic expert suggested expanding the wording of recommendation 1.3.1 to include other psychosocial strategies to use with older children and young people with autism. However, it was considered that new evidence from this surveillance review was unlikely to impact on the guideline, which already recommends other psychological strategies. There were new studies evaluating the combination of risperidone with other medications in the treatment of irritability but most of these medications were not licensed for children or for the treatment of autism, behaviour that challenges or for coexisting problems. Furthermore, this new evidence was reported by small studies, which are unlikely to be enough evidence to recommend the use of these unlicensed medications in combination with risperidone.

We did not find any new evidence on:

  • General principles of care (organisation and delivery of services, making adjustments to the social and physical environment and processes of care).

None of the new evidence considered in surveillance of this guideline was thought to have an effect on current recommendations.

Overall decision

After considering all the new evidence and views of topic experts, we decided not to update NICE guideline CG170 and that a partial update of NICE guideline CG128 was necessary.

No equalities issues were identified during the surveillance process.

See how we made the decision for further information.


This page was last updated: 22 September 2016