Autism spectrum disorder in under 19s: recognition, referral and diagnosis

A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector. [2011]

The local autism strategy group should appoint a lead professional to be responsible for the local autism pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include:

• improving early recognition of autism by raising awareness of the features suggesting possible autism through multi-agency training (see boxes 2 to 4 in the appendix)

• making sure the relevant professionals (healthcare, social care, education and voluntary sector) are aware of the local autism pathway and how to access diagnostic services

• supporting the smooth transition to adult services for young people going through the diagnostic pathway

• ensuring data collection and audit of the pathway takes place. [2011]

In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:

• paediatrician and/or child and adolescent psychiatrist

• speech and language therapist

• psychologist with training and experience in working with autistic children and young people. [2011]

The autism team should either include or have regular access to the following professionals if they are not already in the team:

• paediatrician or paediatric neurologist

• child and adolescent psychiatrist

• psychologist with training and experience complementary to the psychologist in the core team

• occupational therapist. [2011]

Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment. For example, a specialist health visitor or nurse, specialist teacher or social worker. [2011]

The autism team should have the skills and competencies to:

• carry out an autism diagnostic assessment

• communicate with autistic children and young people and children and young people who may be autistic, and with their parents and carers, and sensitively share the diagnosis with them. [2011]

Autism team members should:

• provide advice to professionals about whether to refer children and young people for autism diagnostic assessments

• decide on the assessment needs of those referred or when referral to another service will be needed

• carry out the autism diagnostic assessment

• share the outcome of the autism diagnostic assessment with parents and carers, and with children and young people if appropriate

• with parent or carer consent and, if appropriate, the consent of the child or young person, share information from the autism diagnostic assessment directly with relevant services, for example through a school visit by an autism team member

• offer information to children, young people and parents and carers about appropriate services and support. [2011]

Provide a single point of referral for access to the autism team. [2011]

The autism team should either have the skills (or have access to professionals that have the skills) needed to carry out an autism diagnostic assessment, for children and young people with special circumstances including:

• coexisting conditions such as severe visual and hearing impairments, motor disorders including cerebral palsy, severe learning (intellectual) disabilities, complex language disorders or complex mental health disorders

• looked-after children and young people. [2011]

If young people present at the time of transition to adult services, the autism team should consider carrying out the autism diagnostic assessment jointly with the adult autism team, regardless of the young person's intellectual ability. [2011]

Consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for individual signs and symptoms. [2011]

Always take parents' or carers' concerns and, if appropriate, the child's or young person's concerns, about behaviour or development seriously, even if these are not shared by others. [2011]

When considering the possibility of autism and whether to refer a child or young person to the autism team, be critical about your professional competence and seek advice from a colleague if in doubt about the next step. [2011]

To help identify the features suggesting possible autism, use boxes 2 to 4 (see the appendix). Do not rule out autism if the exact features described in the boxes are not evident; they should be used for guidance, but do not include all possible manifestations of autism. [2011]

When considering the possibility of autism, be aware that:

• autism may be under-recognised in girls leading to underdiagnosis

• signs and symptoms should be seen in the context of the child's or young person's overall development

• signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals

• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person's coping mechanisms and/or a supportive environment

• it is necessary to take account of cultural variation, but do not assume that language delay is accounted for because English is not the family's first language or by early hearing difficulties

• autism may be missed in children or young people with a learning (intellectual) disability

• autism may be missed in children or young people who are verbally able

• important information about early development may not be readily available for some children and young people, for example looked-after children and those in the criminal justice system

• signs and symptoms may not be accounted for by disruptive home experiences or parental or carer mental or physical illness. [2011]

When considering the possibility of autism, ask about the child or young person's use and understanding of their first language. [2011]

Do not rule out autism because of:

• good eye contact, smiling and showing affection to family members

• reported pretend play or normal language milestones

• difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

• a previous assessment that concluded that there was no autism, if new information becomes available. [2011]

Discuss developmental or behavioural concerns about a child or young person with parents or carers, and the child or young person themselves if appropriate. Discuss sensitively the possible causes, which may include autism, emphasising that there may be many explanations for the child's or young person's behaviour. [2011]

Be aware that if parents or carers or the child or young person themselves have not suspected a developmental or behavioural condition, raising the possibility may cause distress, and that:

• it may take time for them to come to terms with the concern

• they may not share the concern. [2011]

Take time to listen to parents or carers and, if appropriate, the child or young person, to discuss concerns and agree any actions to follow including referral. [2011]

Refer children younger than 3 years to the autism team if there is regression in language or social skills. [2011]

Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:

• older than 3 years with regression in language

• of any age with regression in motor skills. [2011]

Consider referring children and young people to the autism team if you are concerned about possible autism on the basis of reported or observed features suggesting possible autism (see boxes 2 to 4 in the appendix). Take account of:

• the severity and duration of the features suggesting possible autism

• the extent to which the features suggesting possible autism are present across different settings (for example, home and school)

• the impact of the features suggesting possible autism on the child or young person and on their family

• the level of parental or carer concern and, if appropriate, the concerns of the child or young person

• factors associated with an increased prevalence of autism (see box 1)

• the likelihood of an alternative diagnosis. [2011]

When a child or young person is referred to the autism team, at least one member of the autism team should consider whether to carry out:

• an autism diagnostic assessment and/or

• an alternative assessment. [2011]

Carry out an autism diagnostic assessment if there is regression in language or social skills in a child younger than 3 years. [2011]

Refer first to a paediatrician or paediatric neurologist (if this has not already happened) children or young people:

• older than 3 years with regression in language

• of any age with regression in motor skills.
  
  The paediatrician or paediatric neurologist can refer back to the autism team if necessary. [2011]

When deciding whether to carry out an autism diagnostic assessment, take account of the following (unless the child is under 3 years and has regression in language or social skills – see recommendation 1.4.2):

• the severity and duration of the signs and/or symptoms

• the extent to which the signs and/or symptoms are present across different settings (for example, home and school)

• the impact of the signs and/or symptoms on the child or young person and on their family or carer

• the level of parental or carer concern, and if appropriate the concerns of the child or young person

• factors associated with an increased prevalence of autism (see box 1 in recommendation 1.3.3)

• the likelihood of an alternative diagnosis. [2011]

If there is insufficient information to decide whether an autism diagnostic assessment is needed, gather any available information from healthcare professionals. With consent from parents or carers and, if appropriate, the child or young person, seek information from schools or other agencies. [2011]

If there is uncertainty about whether an autism diagnostic assessment is needed after information has been gathered, offer a consultation to gather information directly from the child or young person and their family or carers. [2011]

Once it has been decided to carry out an autism diagnostic assessment, with consent from parents or carers (and the child or young person if appropriate):

• seek a report from the pre-school or school if one has not already been made available

• gather any additional health or social care information, including results from hearing and vision assessments. [2011]

Avoid repeated information gathering and assessments by efficient communication between professionals and agencies. [2011]

Start the autism diagnostic assessment within 3 months of the referral to the autism team. [2011]

A case coordinator in the autism team should be identified for every child or young person who is to have an autism diagnostic assessment. [2011]

The autism case coordinator should:

• act as a single point of contact for the parents or carers and, if appropriate, the child or young person being assessed, through whom they can communicate with the rest of the autism team

• keep parents or carers and, if appropriate, the child or young person, up-to-date about the likely time and sequence of assessments

• arrange the provision of information and support for parents, carers, children and young people as directed by the autism team

• gather information relevant to the autism diagnostic assessment (see recommendation 1.4.7). [2011]

Discuss with the parents or carers and, if appropriate, the child or young person, how information should be shared throughout the autism diagnostic assessment, including communicating the outcome of the assessment. Take into account, for example, the child or young person's age and ability to understand. [2011]

Include in every autism diagnostic assessment:

• detailed questions about parent's or carer's concerns and, if appropriate, the child's or young person's concerns

• details of the child's or young person's experiences of home life, education and social care

• a developmental history, focusing on developmental and behavioural features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information)

• assessment (through interaction with and observation of the child or young person) of social and communication skills and behaviours, focusing on features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information)

• a medical history, including prenatal, perinatal and family history, and past and current health conditions

• a physical examination

• consideration of the differential diagnosis (see recommendation 1.5.7)

• systematic assessment for conditions that may coexist with autism (see recommendation 1.5.15)

• development of a profile of the child's or young person's strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context.

• communication of assessment findings to the parent or carer and, if appropriate, the child or young person. [2011, amended 2017]

Perform a general physical examination and look specifically for:

• skin stigmata of neurofibromatosis or tuberous sclerosis using a Wood's light

• signs of injury, for example self-harm or child maltreatment (see the NICE guidelines on self-harm in over 8s and child maltreatment)

• congenital anomalies and dysmorphic features including macrocephaly or microcephaly. [2011]

Consider the following differential diagnoses for autism and whether specific assessments are needed to help interpret the autism history and observations:

• Neurodevelopmental disorders:

  • specific language delay or disorder

  • a learning (intellectual) disability or global developmental delay

  • developmental coordination disorder (DCD).

• Mental and behavioural disorders:

  • attention deficit hyperactivity disorder (ADHD)

  • mood disorder

  • anxiety disorder

  • attachment disorders

  • oppositional defiant disorder (ODD)

  • conduct disorder

  • obsessive compulsive disorder (OCD)

  • psychosis.

• Conditions in which there is developmental regression:

  • Rett syndrome

  • epileptic encephalopathy.

• Other conditions:

  • severe hearing impairment

  • severe visual impairment

  • maltreatment

  • selective mutism. [2011]

Consider which assessments are needed to construct a profile for each child or young person, for example:

• intellectual ability and learning style

• academic skills

• speech, language and communication

• fine and gross motor skills

• adaptive behaviour (including self-help skills)

• mental and emotional health (including self-esteem)

• physical health and nutrition

• sensory sensitivities

• behaviour likely to affect day-to-day functioning and social participation

• socialisation skills. [2011]

If there are discrepancies during the autism diagnostic assessment between reported signs or symptoms and the findings of the autism observation in the clinical setting, consider:

• gathering additional information from other sources and/or

• carrying out further autism‑specific observations in different settings, such as the school, nursery, other social setting or at home. [2011]

Use information from all sources, together with clinical judgment, to diagnose autism based on ICD-11 or DSM-5 criteria. [2011, amended 2017]

Do not rely on any autism-specific diagnostic tool alone to diagnose autism. [2011]

Be aware that in some children and young people there may be uncertainty about the diagnosis of autism, particularly in:

• children younger than 24 months

• children or young people with a developmental age of less than 18 months

• children or young people for whom there is a lack of available information about their early life (for example, some looked-after or adopted children)

• older teenagers

• children or young people with a complex coexisting mental health disorder (for example ADHD, conduct disorder, a possible attachment disorder), sensory impairment (for example severe hearing or visual impairment), or a motor disorder such as cerebral palsy. [2011]

Be aware that some children and young people will have features of behaviour that are seen in the autism spectrum but do not reach the ICD‑11 or DSM-5 diagnostic criteria for definitive diagnosis. Based on their profile, consider referring to appropriate services. [2011, amended 2017]

If the outcome of the autism diagnostic assessment clearly indicates that the child or young person does not have autism, consider referring them to appropriate services based on their profile. [2011]

Consider whether the child or young person may have any of the following as a coexisting condition, and if suspected carry out appropriate assessments and referrals:

• Mental and behaviour problems and disorders:

  • ADHD

  • anxiety disorders and phobias

  • mood disorders

  • oppositional defiant behaviour

  • tics or Tourette syndrome

  • OCD

  • self-injurious behaviour.

• Neurodevelopmental problems and disorders:

  • global delay or a learning (intellectual) disability

  • motor coordination problems or DCD

  • academic learning problems, for example in literacy or numeracy

  • speech and language disorder.

• Medical or genetic problems and disorders:

  • epilepsy and epileptic encephalopathy

  • chromosome disorders

  • genetic abnormalities, including fragile X

  • tuberous sclerosis

  • muscular dystrophy

  • neurofibromatosis.

• Functional problems and disorders:

  • feeding problems, including restricted diets

  • urinary incontinence or enuresis

  • constipation, altered bowel habit, faecal incontinence or encopresis

  • sleep disturbances

  • vision or hearing impairment. [2011]

Be aware that in children and young people with communication difficulties it may be difficult to recognise functional problems or mental health problems. [2011]

If there is uncertainty after the autism diagnostic assessment about the diagnosis, consider keeping the child or young person under review, taking into account any new information. [2011]

If any of the following apply after assessment, consider obtaining a second opinion (including referral to a specialised tertiary autism team if necessary):

• continued uncertainty about the diagnosis

• disagreement about the diagnosis within the autism team

• disagreement with parents or carers or, if appropriate, the child or young person, about the diagnosis

• a lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem

• a lack of response as expected to any therapeutic interventions provided to the child or young person. [2011]

During the autism diagnostic assessment, consider any potential risk of harm to, and from, the child or young person and take appropriate action. [2011]

Do not routinely perform any medical investigations as part of an autism diagnostic assessment, but consider the following in individual circumstances and based on physical examination, clinical judgment and the child or young person's profile:

• genetic tests, as recommended by your regional genetics centre, if there are specific dysmorphic features, congenital anomalies and/or evidence of a learning (intellectual) disability

• electroencephalography if there is suspicion of epilepsy (see the NICE guideline on epilepsies). [2011]

After the autism diagnostic assessment discuss the findings, including the profile, sensitively, in person and without delay with the parents or carers and, if appropriate, the child or young person. Explain the basis of conclusions even if the diagnosis of autism was not reached. [2011]

Use recognised good practice when sharing a diagnosis with parents, carers, children and young people. [2011]

For children and young people with a diagnosis of autism, discuss and share information with parents or carers and, if appropriate, the child or young person, to explain:

• what autism is

• how autism is likely to affect the child or young person's development and function. [2011]

Provide parents or carers and, if appropriate, the child or young person, with a written report of the autism diagnostic assessment. This should explain the findings of the assessment and the reasons for the conclusions drawn. [2011]

Share information, including the written report of the diagnostic assessment, with the GP. [2011]

With parental or carer consent and, if appropriate, the consent of the child or young person, share information with key professionals involved in the child's or young person's care, including those in education and social care. [2011]

With parental or carer consent and, if appropriate, the consent of the child or young person, make the profile available to professionals in education (for example, through a school visit by a member of the autism team) and, if appropriate, social care. This is so it can contribute to the child or young person's individual education plan and needs-based management plan. [2011]

For children and young people with a diagnosis of autism, offer a follow-up appointment with an appropriate member of the autism team within 6 weeks of the end of the autism assessment for further discussion (for example about the conclusions of the assessment and the implications for the child or young person). [2011]

For children and young people with a diagnosis of autism, discuss with parents or carers the risk of autism occurring in siblings and future children. [2011]

Provide individual information on support available locally for parents, carers, and autistic children and young people, according to the family's needs. This may include:

• contact details for:

  • local and national support organisations (who may provide, for example, an opportunity to meet other families with experience of autism, or information about specific courses for parents and carers and/or young people)

  • organisations that can provide advice on welfare benefits

  • organisations that can provide information on educational support and social care

• information to help prepare for the future, for example transition to adult services. [2011]