Dr Carole Buckley (left), Prof Tim Kendall, Dr Clare Taylor, and Prof Gillian Baird explain how primary care can support children and young people with autism and their families
NICE Clinical Guideline 170 on Autism: the management and support of children and young people on the autism spectrum has been awarded the NICE Accreditation Mark.
This Mark identifies the most robustly produced guidance available. See evidence.nhs.uk/accreditation for further details.
A utism is a neurodevelopmental disorder defined by the core symptoms of persistent impairment in reciprocal social interaction and social communication, combined with restricted or repetitive patterns of behaviour, interests, or activities. Autism affects at least 1% of children and young people,1,2 and is diagnosed more often in males than in females,3 raising the concern that it may go unrecognised in many girls. Although around 25% to 30% of individuals with the disorder who have good intellectual skills are able to achieve well academically and to find employment as adults,4 for others autism has a severe adverse lifelong impact and cost to them, their families, and professional services.5
Autism frequently coexists with a range of cognitive, learning, language, medical, emotional, and behavioural problems. Approximately 50% of children and young people with autism have intellectual disability (with an IQ below 70); some have additional medical problems, including epilepsy and gastrointestinal problems, and many have an additional psychiatric disorder,6 including:7
- attention deficit hyperactivity disorder (ADHD)
- disruptive disorders
- compulsive disorders
- self-injurious behaviour
- other challenging, sometimes aggressive, behaviours.
People with autism commonly have problems with:7
- sleeping, eating, and elimination
- dyspraxia or motor coordination
- academic learning and language
- sensory sensitivities (e.g. to certain foods, smells, sounds, textures, and colours).
Although there is no known ‘cure’ for autism, there are a number of effective interventions available, described below. These interventions target not only the core symptoms of impairment in reciprocal social interaction and social communication, but also the wide range of problems associated with autism.
This article summarises the key recommendations relevant for GPs and other primary care professionals in NICE Clinical Guideline (CG) 170 on Autism—the management and support of children and young people on the autism spectrum (see www.nice.org.uk/guidance/CG170).8 This guideline was developed by NICE in collaboration with the Social Care Institute for Excellence and the National Collaborating Centre for Mental Health. It covers children and young people with autism (across the full range of intellectual ability) from birth until their nineteenth birthday, and their parents and carers,8 and accompanies NICE CG128 on Autism diagnosis in children and young people: recognition, referral and diagnosis of children and young people on the autism spectrum (see www.nice.org.uk/guidance/CG128). 9
The signs of autism will vary, depending on age, severity, developmental level, and associated problems, but typically in early childhood there is:7
- delayed language
- social impairment shown by:
- limited interest in others
- not sharing interests
- lack of gaze switching, pointing, and vocalisations
- atypical eye contact
- lack of (or unusual) gestures and facial expression
- difficulties recognising others’ personal space and body language
- little creative and imaginative social play.
Later in childhood there may be:
- limited sharing of interests with others, and social reciprocity in conversation
- some rigidity and insistence on rules.
Regression or stasis in language and social development in the second year of life is reported in about one-third of children diagnosed with autism.7 Early language delay may improve, and children who are initially very socially withdrawn or aloof may become much more socially interactive with age, although they often have poor skills in negotiation, turn-taking, coping with not winning, and resolving conflict. Social naivety and vulnerability to exploitation can become common as the child gets older. Even individuals with good cognitive ability and language skills may struggle in more demanding and unfamiliar social contexts, and experience difficulties in making and keeping friends.7
The role of primary care
It may seem that much of NICE CG170 is aimed at secondary care services; many of the recommendations, however, are relevant to primary care, which has a key role in recognising and referring children and young people with autism and offering ongoing support to them, their family, and carers. Primary care can also identify and provide initial assessment of coexisting problems (e.g. anxiety, epilepsy, sleep problems, and behaviour that challenges), and refer the child/young person to appropriate services, as well as monitoring ongoing health needs and medication.8
Access to healthcare and social care services
The guideline development group for NICE CG170 emphasised that all children and young people with autism should have unrestricted access to healthcare and social care services, regardless of their intellectual ability or any other diagnosis.8 This is because children and young people and their families find that access to services is especially circumscribed for those who do not have intellectual disability.10 It is also the case that sometimes the child’s problems have to reach a crisis point before the child is granted access to a service.10,11 Primary care need to ask themselves how easy it is for people affected by autism to access their services, for example:
- have staff received autism awareness training?
- are service users and their families asked what reasonable adjustments are needed to accommodate them
(e.g. provision of a quiet area to wait)?
- do reception staff recognise and support the special needs of those with autism?
Increasing knowledge and competence
There is some indication12 that healthcare professionals (including those in primary care)13,14 need training in autism awareness, and basic skills in managing autism, behaviour that challenges, and common coexisting conditions.
It is also important that all professionals who work with children and young people with autism are aware of:8
- the impact key transition points can have on the child, for example:
- changing schools or healthcare or social care services
- the onset of puberty
- how the social and physical environment can affect the child’s behaviour
- the impact of autism on the family
- how to communicate with children with autism
- how to assess risk.
Adjustments to the social and physical environment and processes of care
Healthcare professionals do not always consider the impact the physical environment and ‘processes of care’
(e.g. appointments and waiting times) can have on people with autism.10 Any negative impact can be minimised by:8
- providing visual supports
(e.g. words, pictures, or symbols that are meaningful for the child or young person)
- making reasonable adjustments or adaptations to the amount of personal space given
- considering individual sensory sensitivities to lighting, noise levels, and the colour of walls and furnishings
- arranging appointments at the beginning or end of the day to reduce waiting times.
General practitioners should recognise the need to adapt consultations in terms of their style, duration, and language to facilitate effective communication and improve outcomes.8
Interventions for the core features of autism
NICE CG170 recommends a specific social-communication intervention for the core features of autism in children and young people, delivered by a trained professional. Primary care should be sensitive to the strain this may place on families, and recognise their psychological needs.8 Maintaining a strict behavioural approach whilst juggling the needs of other family members and outside interests (such as work) place a considerable burden on the carers. Also, if the intervention is unsuccessful in managing the target behaviour, it can leave the carers feeling as if they have failed their child.
Interventions that should not be used for core features of autism
The following interventions should not be used to manage the core features of autism:8
- exclusion diets (e.g. gluten- or casein-free diets).
In addition to a social-communication intervention for the core features of autism, healthcare professionals should offer the child or young person support in developing coping strategies and accessing community services, including help in developing skills to use public transport, and to find and engage with employment and leisure facilities.8
Interventions for coexisting problems
Autism is associated with a number of coexisting problems that are not part of the diagnostic criteria for autism, but which have a significant impact on the child or young person.6,15,16
NICE CG170 recommends that psychosocial and pharmacological interventions for these conditions
should be offered in line with NICE guidance, for example:8
- ADHD (NICE CG72; www.nice.org.uk/cg72)17 7
- conduct disorders in children and young people (NICE CG158; www.nice.org.uk/cg158)18
- constipation in children and young people (NICE CG99; www.nice.org.uk/cg99)19
- depression in children and young people (NICE CG28; www.nice.org.uk/cg28)20
- epilepsy (NICE CG137; www.nice.org.uk/cg137)21
- obsessive-compulsive disorder and body dysmorphic disorder (NICE CG31; www.nice.org.uk/cg31)22
- post-traumatic stress disorder (NICE CG26; www.nice.org.uk/cg26).23
Children and young people with autism and coexisting anxiety may be offered group or individual cognitive behavioural therapy if they have the verbal and cognitive ability to engage in this kind of intervention. The intervention may need to be adapted to the needs of children and young people with autism.
Sleep problems are reported by between 40% and 86% of children and young people with autism.24,25 Disturbed sleep can have a devastating effect on the whole family, and although primary care may not deliver specific interventions, it needs to offer practical support. This may take the form of advocacy to support an appropriate level of respite care, or help for parents or carers negotiating with housing authorities to separate siblings who are sleeping in the same room. Primary care can also offer initial assessment and basic sleep hygiene advice.
NICE CG170 recommends an initial assessment to identify:8
- what the sleep problem is
- day and night sleep patterns
- whether bedtime is regular
- what the sleep environment is like,
- levels of noise and light
- presence of a TV or computer
- whether the room is shared
- presence of co-morbidities, possible physical illness, or discomfort
- levels of activity and exercise during the day
- effects of any medication
- effects of emotional relationships or problems at school
- the impact of sleep and behavioural problems on families and carers.
If the child or young person snores loudly, chokes, or appears to stop breathing while sleeping, they should be referred to a specialist to check for obstructive sleep apnoea.8
The next step should be to develop a sleep plan (often a specific sleep behavioural intervention) with the parents or carers, to help address the identified sleep problems and to establish a regular night-time sleep pattern. The parents/carers should record the child or young person’s sleep and wakefulness (day and night) for 2 weeks. The plan should be reviewed until a regular sleep pattern is established.8
A pharmacological intervention should not be used unless the sleep problem:8
- persists despite following the sleep plan
- is having a negative impact on the child/young person and the family/carers.
If a pharmacological intervention is used to aid sleep it should be:8
- used only following consultation with a specialist paediatrician or psychiatrist with expertise in autism or paediatric sleep medicine
- used in conjunction with non-pharmacological interventions
- regularly reviewed to evaluate the ongoing need and to ensure that the benefits continue to outweigh the
If the sleep problems continue to have a serious impact, consider:8
- referral to a paediatric sleep specialist and
- regular short breaks and other respite care for parents, carers, and siblings, for one night or more, at intervals agreed with them.
Interventions that should not be used
NICE CG170 advises that the following interventions should not be used as specified (or in any context) in children and young people with autism:8
- neurofeedback and auditory integration training should not be used to manage speech and language problems
- omega-3 fatty acids should not be used to manage sleep problems
- secretin, chelation, and hyperbaric oxygen therapy should not be used to manage autism in any context.
Primary care health professionals should feel able to advise parents, who are often desperate to find some way of helping their child, that none of the above interventions have any evidence to support their use, and in some instances may cause harm.
Preventing and managing behaviour that challenges
Primary care may be the first point of contact for parents with children with challenging behaviour. Clinicians should conduct an initial assessment as set out below and ensure prompt referral to specialist services, if required. Early detection of such behaviour, and putting into place support and interventions, will improve outcomes considerably. It may not seem that serious when a 7-year-old is physically aggressive, but a 17-year-old can cause a lot of damage and may lose their liberty if their behaviour is not addressed. Many parents and carers are reluctant or embarrassed to discuss behaviour that challenges, seeing it as a failure on their part; primary care should be sensitive to the potential problems and ask parents and carers about behaviour if their suspicions are raised.
All professionals can look at ways of reducing the risk of behaviour that challenges in routine assessment and care planning in children and young people with autism. This involves assessing factors that may contribute to such behaviour, for example:8
- impairments in communication that may result in the child or young person having difficulty understanding situations or expressing their needs and wishes
- coexisting physical disorders (e.g. pain or gastrointestinal disorders)
- coexisting mental health problems (e.g. anxiety or depression and other neurodevelopmental conditions such as ADHD)
- the physical environment (e.g. lighting and noise levels)
- the social environment, including home, school, and leisure activities
- changes to routines or personal circumstances
- developmental change, including puberty
- exploitation or abuse by others
- inadvertent reinforcement of behaviour that challenges
- the absence of predictability and structure.
If a child or young person exhibits behaviour that challenges, and no coexisting mental health or behavioural problem, physical disorder, or environmental problem has been identified as triggering or maintaining the behaviour, they should be offered a psychosocial intervention that has been informed by a functional assessment of behaviour.
If a psychosocial intervention or other interventions are insufficient, or cannot be delivered because of the severity of the behaviour, antipsychotic medication may be considered—initially this should be prescribed only by a paediatrician or psychiatrist.8
At the time of publication of NICE CG170 (August 2013), no antipsychotic medication had a UK marketing authorisation for use in children for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing and managing medicines and devices for further information.26
If the responsibilitiy for prescribing is transferred to primary care, the GP should ensure that they are given clear written details about future plans around the prescribing, including:8
- the selection of target behaviours
- monitoring of beneficial and side effects
- the potential for minimally effective dosing
- the proposed duration of treatment
- plans for stopping treatment.
Supporting families and carers
The impact of a child’s autism on families and carers can be considerable. Parental stress is high27 and greater than in parents of children with other developmental disorders.28 Stress in parents can result in more maladaptive behaviours in their children29 and can also reduce the effectiveness of interventions.27 It is therefore crucial that families and carers are adequately supported. Primary care is pivotal in ensuring the needs of families and carers are identified, recorded, and assessed. NICE CG170 recommends that all families and carers should be given information about their right to short breaks and other respite care, and a formal carer’s assessment (by social care) of their own physical and mental health needs, and how to access these. Professionals should also ascertain whether families (including siblings) and carers have:8
- personal, social, and emotional support
- practical support in their caring role, including short breaks and emergency plans
- a plan for future care for the child or young person, including transition to adult services.
When the needs of families and carers have been identified, professionals should discuss help available locally and, taking into account their preferences, offer information, advice, training, and support, especially if they:8
- need help with the personal, social, or emotional care of the child or young person, including age-related needs such as self-care, relationships or sexuality
- are involved in the delivery of an intervention for the child or young person in collaboration with healthcare and social care professionals.
Transition to adult services
As part of the preparation for the transition to adult services, healthcare and social care professionals should carry out a comprehensive assessment of the young person with autism. The assessment should make best use of existing documentation about personal, educational, occupational, social, and communication functioning, and should include assessment of any coexisting conditions in line with NICE CG142 on the recognition, referral, diagnosis and management of autism in adults.30 For young people aged 16 years or older whose needs are complex or severe, the care programme approach in England (or care and treatment plans in Wales), should be used as an aid for transfer between services.
The young person (and, where appropriate, their parents or carers) should be involved in the planning. They should be given information about adult services, including their right to a social care assessment when they reach the age of 18 years. During transition to adult services, a formal meeting involving healthcare, social care, and other relevant professionals from child and adult services, is advised.8
It is important to recognise that adult services function in a different way from paediatric services and, for some people, primary care may become their only source of healthcare support. Good communication with primary care is therefore essential.
The local autism multi-agency strategy group is a key requirement for commissioning in all NICE guidance relating to autism. This group is responsible for developing, managing, and evaluating local care pathways. It is particularly important that the group is active and has clear pathways in place to support people with autism in transition from children’s to adults’ services as they are particularly vulnerable at this time.
Barriers to implementation
A major problem faced by GPs is the recognition and identification of children and young people with varying degrees of autism. While this aspect is covered by NICE CG128 on the diagnosis and assessment of autism in children and young people,9 it remains a significant barrier to obtaining help for children with autism and their parents/carers, especially when the presentation of the condition is more subtle. Once the condition is recognised, GPs need to be aware of the broad range of co-morbidities that may bring parents of children with autism back to see them (e.g. disturbed sleep, eating problems, and behavioural difficulties, including behaviour that challenges). While repeat referral to secondary care will be necessary for some of these issues (e.g. coexisting ADHD), many can be managed in primary care (e.g. sleeping problems). Support for parents is also essential, but being realistic with parents, while maintaining an optimistic attitude, is not always easy for GPs.
Autism is a lifelong condition and often coexists with a wide range of other problems, but effective interventions are available that can help alleviate the core symptoms and treat the associated difficulties. With appropriate training, healthcare professionals in primary care have an important role in the recognition of autism and other problems. Depending on the severity of the condition, GPs can refer the child/young person, or offer initial assessment, and ensure that they and their family and carers receive support throughout the individual’s childhood and adolescence, and into adulthood.
NICE implementation tools
NICE has developed the following tools to support implementation of Clinical Guideline 170 (CG170) on Autism—the management and support of children and young people on the autism spectrum. The tools are now available to download from the NICE website: www.nice.org.uk/CG170
NICE support for commissioners
The costing statement estimates the financial impact to the NHS of implementing this clinical guideline. This statement focuses on the financial impact of the recommendations that require most change in resources to implement in England.
NICE support for service improvement systems and audit
Baseline assessment tool
The baseline assessment tool is an Excel spreadsheet that can be used by organisations to identify if they are in line with practice recommended in NICE guidance and to help them plan activity that will help them meet the recommendations.
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- Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders—Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ 2012; 61 (3): 1–19.
- Mandy W, Chilvers R, Chowdhury U et al. Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents. J Autism Dev Disord 2012; 42 (7): 1304–1313.
- Howlin P, Moss P, Savage S, Rutter M. Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. J Am Acad Child Adolesc Psychiatry 2013: 52 (6); 572–581.
- Knapp M, Romeo R, Beecham J. Economic cost of autism in the UK. Autism 2009; 13 (3): 317–336.
- Simonoff E, Pickles A, Charman T et al. Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry 2008; 47 (8): 921–929.
- National Collaborating Centre for Mental Health. Autism—the management and support of children and young people on the autism spectrum. Leicester & London: British Psychological Society & Royal College of Psychiatrists, 2013. Available at: www.nice.org.uk/guidance/CG170/Guidance (accessed 7 January 2014).
- NICE. Autism—the management and support of children and young people on the autism spectrum. Clinical Guideline 170. NICE, 2013. Available at: www.nice.org.uk/guidance/CG170
- NICE. Autism diagnosis in children and young people: recognition, referral and diagnosis of children and young people on the autism spectrum. Clinical Guideline 128. NICE, 2011. Available at: www.nice.org.uk/guidance/CG128
- Dittrich R, Burgess L, Bartolomeo K. Autism participation—have your say! Responses. Hampshire’s pre-consultation: developing a Hampshire autism strategy to meet local needs. Hampshire: Hampshire County Council, 2011. Available at: www.hants.gov.uk/pdf/autism-participation-report-september2011.pdf
- Kendall T, Megnin-Viggars O, Gould N et al. Management of autism in children and young people: summary of NICE and SCIE guidance.BMJ 2013; 347: f4865.
- Osborne L, Reed P. Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism 2008; 12 (3): 309–324.
- Carbone P, Behl D, Azor V, Murphy N. The medical home for children with autism spectrum disorders: parent and pediatrician perspectives.J Autism Dev Disord 2010; 40 (3): 317–324.
- Valentine K. A consideration of medicalisation: choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Soc Sci Med 2010; 71 (5): 950–957.
- Hofvander B, Delorme R, Chaste P et al. Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry. 2009; 9: 35.
- Bolton P, Carcani-Rathwell I, Hutton J et al. Epilepsy in autism: features and correlates. Br J Psychiatry 2011; 198 (4): 289–294.
- NICE. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. Clinical Guideline 72. NICE, 2008. Available at: www.nice.org.uk/guidance/CG72
- NICE. Antisocial behaviour and conduct disorder in children and young people: recognition, intervention and management. Clinical Guideline 158. NICE, 2013. Available at: www.nice.org.uk/guidance/CG158
- NICE. Constipation in children and young people: diagnosis and management of idiopathic childhood constipation in primary and secondary care. Clinical Guideline 99. NICE, 2010. Available at: www.nice.org.uk/guidance/CG99
- NICE. Depression in children and young people: identification and management in primary, community and secondary care. Clinical Guideline 28. NICE, 2005. Available at: www.nice.org.uk/guidance/CG28
- NICE. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. Clinical Guideline 137. NICE, 2012. Available at: www.nice.org.uk/guidance/CG137
- NICE. Obsessive-compulsive disorder: core interventions in the treatment of obsessive-compulsive disorder and body dysmorphic disorder. Clinical Guideline 31. NICE, 2005. Available at: www.nice.org.uk/guidance/CG31
- NICE. Post-traumatic stress disorder (PTSD): the management of PTSD in adults and children in primary and secondary care. Clinical Guideline 26. NICE, 2005. Available at: www.nice.org.uk/guidance/CG26
- Sivertsen B, Posserud M, Gillberg C. Sleep problems in children with autism spectrum problems: a longitudinal population-based study. Autism 2012; 16 (2): 139–150.
- Souders M, Mason T, Valladares O et al. Sleep behaviors and sleep quality in children with autism spectrum disorders. Sleep 2009; 32 (12): 1566–1578.
- General Medical Council. Good practice in prescribing and managing medicines and devices. London: GMC, 2013. Available at: www.gmc-uk.org/guidance/ethical_guidance/14316.asp (accessed 27 November 2013).
- Osborne L, McHugh L, Saunders J, Reed P. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. J Autism Dev Disorders 2008; 38 (6): 1092–1103.
- Abbeduto L, Seltzer M, Shattuck P et al. Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. Am J Ment Retard 2004; 109 (3): 237–254.
- Greenberg J, Seltzer M, Hong J, Orsmond G. Bidirectional effects of expressed emotion and behavior problems and symptoms in adolescents and adults with autism. Am J Ment Retard 2006; 111 (4): 229–249.
- NICE. Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. Clinical Guideline 142. NICE, 2013. Available at: www.nice.org.uk/guidance/CG142G