NICE’s new autism guidance has serious implications for all those working in health, education and social care
The National Institute for Health and Clinical Excellence (NICE) has published a new clinical guideline to help those who work with children and young people to recognise autism and know how and when they should refer to healthcare professionals for clinical diagnosis.
NICE guidelines are usually aimed at the NHS, but this publication is particularly important for all services that have regular interaction with and responsibility for under-18s, including education and social care.
The need for guidance
Autism was once thought to be an uncommon developmental disorder, but recent studies have reported increased prevalence and now the condition is thought to occur in at least one per cent of children. This rising prevalence has increased demand for diagnostic services for children and young people of all ages in the health service.
When autism is diagnosed, families and carers and the child or young person themselves can experience a variety of emotions, shock and concern about the implications for the future. Diagnosis can offer an understanding of why a child or young person is different from their peers and can open doors to support and services in education, health services and social care, and a route into voluntary organisations and contact with other children and families with similar experiences. All of these can improve the lives of the child or young person and their family.
Levels of understanding of autism among healthcare and other relevant professionals and availability of services differ greatly from one area to another. In addition, children and young people with certain coexisting conditions, such as intellectual disability (having an IQ below 70), are less likely to be diagnosed with autism, leading to inequalities in healthcare and service provision. Coordination between health agencies and other key services such as education, social care and the voluntary sector is important.
The recommendations reflect this need for a joint approach to service delivery. It requires the development of a profile of the child or young person’s strengths and needs which is reflective of the family and educational milieu. Ideally, this could inform the child or young person’s education and needs-based management plan. The recommendations reflect the fact that the diagnosis of autism and the development of a profile of strengths and needs can be the key elements in them accessing specialist health, education and voluntary services.
Following the guideline will lead to:
- easier recognition of possible autism
- a more efficient and comprehensive referral process
- a more individualised experience for children and young people undergoing the diagnosis process, and their families, which meets their care and treatment needs
- a smoother transition to adult services through improved communication between adult and paediatric healthcare teams.
What NICE advises
Strategic planning
NICE advises that a local pathway for the recognition, referral and diagnostic assessment of autism should be developed via a multi-agency strategy group. The strategy group should be made up of managers, commissioners, clinicians from child health and mental health services, education, social care, parent and carer service users and the voluntary sector.
The aims of the group should be to:
- raise awareness of the potential signs and symptoms of autism through multi-agency training
- ensure that relevant professionals are aware of the local autism pathway and how to access diagnostic services
- support the smooth transition to adult services for young people going through the diagnostic pathway
- ensure that data collection and audit of the pathway takes place.
At a more local NHS level, the guideline advises that autism teams should be established which should be responsible for carrying out the diagnostic assessments and for communicating and liaising with the relevant professionals in education and social care. Core members should include a paediatrician and/or child and adolescent psychiatrist, a speech and language therapist and a clinical and/or educational psychologist. In addition, it is recommended that a specialist occupational therapist, teacher, health visitor or nurse is either included in the team or regular access to their services established.
The autism team should:
- provide advice for professionals considering a referral
- decide on the assessment needs of those referred
- share the outcome of the autism diagnostic assessment with parents and carers, children and young people when appropriate
- consider sharing the information with other professionals such as the relevant school staff (with consents in place)
- provide advice for the family, child or young person, available services and support from various agencies.
The team should have the competencies to carry out an accurate autism diagnostic assessment for all children and young people, including those with potential coexisting conditions, or conditions other than autism, as well as for looked-after children and young people. The specialist team is also required to have the skills to communicate with children and young people who have or may receive a diagnosis of autism and to share the diagnosis with parents/carers and the child in a sensitive manner. The reason for a conclusive decision should be explained clearly, whether or not a diagnosis of autism was reached. Furthermore, a report should be generated from the diagnostic assessment and a follow up appointment made within six weeks by a diagnostic team member to the family and the child or young person, if appropriate.
A discussion with parents about the risk of autism occurring in siblings is recommended as part of the diagnostic feedback. The autism team members should appoint a case coordinator who will provide a single point of contact for the child and young person and their family.
Recognising possible signs of autism
Appendix C of the guideline contains a more comprehensive list of possible indicators of autism, but it is not exhaustive. Practitioners should use the tables in the appendix as a guide, but they should also use their professional judgement, take advice from specialist professionals when necessary and always take parents and carers concerns seriously, even if the concerns are not shared by others. The guideline also highlights the need to consider that signs and symptoms may be overlooked in verbally able children and young people, and those with intellectual disability and that autism may be under-diagnosed in girls.
Referring to the autism team
The guideline aims to assist practitioners in making informed decisions regarding whether or not to refer children or young people to autism teams for diagnostic assessments. It emphasises the importance of direct referral to the autism team if there is a regression in language or social skills in children under three years old and referral to a paediatrician or paediatric neurologist for children older than three years with these symptoms, or for children of any age who display a regression in motor skills. Subsequently, this professional will refer them to the autism team if they deem it necessary.
In an attempt to improve the timeliness of referrals, the guideline aims to correct a number of common myths about autism; for example, it recommends that professionals and parents do not rule out autism as a possibility due to good eye contact, affection from the child or young person, meeting play and language milestones, or as the result of a previous assessment. It also highlights factors associated with an increased prevalence which, if in existence, would encourage a practitioner to refer. The guideline suggests useful information the referrer would include at the point of referral, such as relevant medical history, developmental milestones and previous assessment outcomes. It highlights the obvious, but at times neglected, action of informing the parents of what will happen upon referral and suggests a period of “watchful waiting” and review if the parents or the child or young person do not wish the route towards a comprehensive diagnostic assessment to continue.
Diagnostic assessment
An autism team member should decide whether or not to carry out an autism diagnostic assessment or an alternative assessment. The case coordinator from the autism team should be assigned to the family to ensure consistency of information and the development of a professional and supportive relationship between the family and a diagnostic team member throughout the process. It is recommended that the assessment:
- is started within three months of the referral
- incorporates information from all sources, and that these should be used together with clinical judgement to provide a diagnostic outcome
- should incorporate direct observation of the child or young person, and an assessment of their behaviour, social and communications skills
No one diagnostic tool is thought to provide a reliable outcome if used in isolation. Depending on the age of the referred child or young person, the autism team should consider carrying out the assessment jointly with the adult autism team, regardless of the young person’s intellectual ability. A smooth transition to adult services for those young people in the diagnostic pathway process is very important.
After diagnostic assessment
If there is uncertainty about a diagnostic outcome, NICE recommends that more information is gathered and that further autism specific observations in different settings are undertaken. A period of “watchful waiting” is advised as well, if this is deemed useful by the team, after which a review of new information should occur. If there is still uncertainty, disagreement amongst autism specialist team members, disagreement with parents, carers or the child or young person, a lack of response to intervention or a lack of specialist services for co-existing conditions, then the autism team should consider referring the child or young person to a specialist tertiary autism team. If the outcome of the assessment is that the child or young person does not have autism, they should be referred to more appropriate services to meet their needs and information on services should be given to the family or young person where appropriate.
NICE has made a number of recommendations regarding research topics to develop evidence in various unexplained areas, for example, on the consequences of training professionals in the signs and symptoms of autism and on the impact of gathering information from nursery or school settings to inform the diagnostic process.
Conclusion
The work of implementing the recognition, referral and diagnostic guideline is likely to be carried out in the coming months and years. It is hoped that it will be welcomed by service providers and, most importantly, the parents/carers and children and young people so deserving of high standards of support and expertise during the recognition, referral and diagnostic process for autism.
Further information
Lorraine Scott was Guideline Developer for this project at the National Institute of Clinical Excellence (NICE) and is Head of Learning and Support and Assessment Educational Officer, Middletown Centre for Autism, County Armagh, Northern Ireland.
For further information about NICE’s clinical guideline, visit:
www.nice.org.uk/CG128
