NICE Guideline - Autism spectrum disorder in young people

By Dr Jamie Nicholls on the 10 November 2011

This new guideline highlights the importance of the GP's role in the management of autism in children, says Dr Jamie Nicholls.

A formal assessment should follow referral to the autism team (Photograph: SPL)

The recently published NICE guideline on the recognition, referral and diagnosis of autism spectrum disorders in children and young people is the first time that the condition has been reviewed by NICE. Further guidelines on diagnosis and management in adults, and on management in children and young people, are due to follow.

Previous guidance, such as that from the National Autism Plan for Children and SIGN, has not been followed widely, but the hope is that a NICE guideline will have a greater impact and will improve the existing variations in clinical practice.

The guideline outlines key priorities and follows this up with a series of recommendations, several of which are relevant to primary care.

Multi-agency team
The main priority is that every district should establish a multi-agency team with responsibility for providing the autism diagnostic service for the area. There should be a single point of referral to this team, and the team is responsible for ensuring that this point of referral is known to all likely referrers in the area.

The NICE guideline describes how the team should be constituted and the different specialties and capabilities that it should contain. While allowing freedom for local service differences, each team should have a core membership of at least a paediatrician and/or child and adolescent psychiatrist, a speech and language therapist, and a clinical and/or educational psychologist.

The team should also have access to other specialties such as paediatric neurology, occupational therapy, social services and education.

Possible signs and symptoms of autism
Some possible signs and symptoms of autism in children and young people (3-19 years): Spoken language: delayed speech, limited vocabulary, monotonous tone, echolalia and sense of talking 'at' rather than 'to'. Responding to others: absent or delayed response to name being called despite normal hearing (3-11 years), reduced or absent response to other people's facial expressions or feelings, difficulties in understanding others' intentions, rejection of affection initiated by parent or carer and unusually negative response to the requests of others. Interacting with others: reduced or absent awareness of personal space, social interest in others, imitation of others' actions, initiation of social play, enjoyment of situations most children like, socially accepted behaviour, as well as problems losing at games and turn-taking. Poor eye contact, pointing and other gestures. Ideas and imagination: lack of pretend or imaginative play and creativity. Unusual or restricted interests and/or rigid and repetitive behaviours: repetitive movements, over-focused, unusual or highly specific interests, excessive insistence on following own agenda and things being 'the same' or 'just right', excessive reaction to taste, smell or appearance of food. Other: poorly developed social or motor co-ordination skills while particular areas of knowledge, reading or vocabulary skills are advanced for age. Social and emotional development more immature than other areas of development, excessive trusting, lack of common sense and being less independent than peers. Note: This list has been summarised from three tables in appendix C of NICE's clinical guideline 128. These are not exhaustive and professional judgment should always be used first and foremost.

Possible signs and symptoms of autism

Some possible signs and symptoms of autism in children and young people (3-19 years):

Spoken language: delayed speech, limited vocabulary, monotonous tone, echolalia and sense of talking 'at' rather than 'to'.
Responding to others: absent or delayed response to name being called despite normal hearing (3-11 years), reduced or absent response to other people's facial expressions or feelings, difficulties in understanding others' intentions, rejection of affection initiated by parent or carer and unusually negative response to the requests of others.
Interacting with others: reduced or absent awareness of personal space, social interest in others, imitation of others' actions, initiation of social play, enjoyment of situations most children like, socially accepted behaviour, as well as problems losing at games and turn-taking.
Poor eye contact, pointing and other gestures.
Ideas and imagination: lack of pretend or imaginative play and creativity.
Unusual or restricted interests and/or rigid and repetitive behaviours: repetitive movements, over-focused, unusual or highly specific interests, excessive insistence on following own agenda and things being 'the same' or 'just right', excessive reaction to taste, smell or appearance of food.
Other: poorly developed social or motor co-ordination skills while particular areas of knowledge, reading or vocabulary skills are advanced for age. Social and emotional development more immature than other areas of development, excessive trusting, lack of common sense and being less independent than peers.

Note: This list has been summarised from three tables in appendix C of NICE's clinical guideline 128. These are not exhaustive and professional judgment should always be used first and foremost.

Training
Even if every district has an excellent autism team, the process of getting a diagnosis relies on them receiving appropriate referrals. Therefore, as well as providing the diagnostic service, another important duty for the team is training all professionals caring for children and young people to make them aware of the classical signs of autism, and how they should act if they suspect autism.

This will involve training for GPs and health visitors but may also extend to other groups, such as teachers and social workers. It is proposed that the autism team will accept referrals from any source via the single point of referral.

Communication between the team and primary care will therefore be essential to ensure that all relevant staff are included in the process.

The NICE guideline contains tables of symptoms or behaviours typical in autistic children. There is no single symptom that can be considered highly indicative of autism (except perhaps regression in language or social skills), so the decision about who and when to refer rests on the judgment of the referrer.

Referral
If a GP suspects a child or young person may have autism, the guideline describes what information should accompany a referral to the team. The team may accept the referral or seek further information if appropriate.

To avoid unnecessary delay, the guideline lays down a time frame for the diagnostic process. The formal diagnostic assessment should start within three months of referral, so it is important that the team performing the assessment has collated all the relevant information from primary care, education and possibly social services within this time.

The guideline contains a description of the formal diagnostic assessment to be used once a child or young person has been referred to the autism team.

It does not recommend any specific diagnostic instrument due to insufficient evidence. The decision of which diagnostic tool to use is left to the examining clinician.

GPs should be kept informed of how the assessment is proceeding and what the outcome is. The guideline development group acknowledged that many parents or carers may be consulting the GP during the autism diagnostic process, and it is therefore essential that the GP is kept fully informed of the situation, even if it was not the GP who initiated the referral.

At first sight it may appear that compliance with this guideline is going to be expensive. However, the personnel required for the autism assessment team already exist in most districts.

While the cost of a formal assessment may seem high, it compares favourably with many surgical procedures. Undiagnosed autism, or misdiagnosis, may condemn the patient to a lifetime of mismanagement and could have knock-on effects for the NHS and society in general.

For further information about the guideline, including tools to help healthcare professionals implement the recommendations, visit www.nice.org.uk/CG128

Dr Nicholls is a retired GP. He has a 31-year-old son with autism and has worked with the National Autistic Society to increase awareness of autism in primary care. He is a member of the guideline development group for this NICE guideline.