Implementing NICE guidance

September 2011

NICE clinical guideline 128

 What this presentation covers
Definition

Background

Epidemiology

Scope

Priorities for implementation

Costs and savings

Discussion

NICE Pathway and NHS Evidence

Find out more

 Definition

• The over-arching category term used in ICD-10 and

DSM-IV is pervasive developmental disorder, a term
used synonymously with autism spectrum disorder.

• Different individuals prefer a variety of terms.

• ‘Autism’ in this slide set and throughout the NICE

guideline refers to ‘autism spectrum disorders’ and is
used as an umbrella term, synonymous with all
diagnosed autism spectrum disorders.
 Background

• Autism is a lifelong disorder that has a great impact on

the child or young person and their family or carers.

• Autism describes behavioural differences and difficulties

with reciprocal social interaction and communication,
combined with restricted interests and rigid and repetitive
behaviours.

• Core autism behaviours are typically present in early

childhood, but features may not be apparent in some
individuals until their circumstances change, such as
going to school or transition to secondary school.
 Epidemiology

• Autism was previously thought to be an uncommon

disorder, but is now thought to occur in at least 1% of
children.
• There is wide variation in availability of services.
• Delays in diagnosis affect access to services.
• Coordination between health and other services is a
key element to improving care.
 Scope

The guideline covers:

• Children and young people from birth up to their 19th
birthday.
• Local strategy and pathway for recognition, referral
and diagnosis of autism.
• Signs and symptoms of possible autism.
• Components of diagnostic assessment and the health
professionals who should be involved with this.
• Information and support needs.

This guideline does not cover management of

autism.
 Key priorities for implementation

• Local pathway for recognition, referral and diagnostic

assessment (slides 8–10 covering the local autism
strategy group and the autism team).

• Diagnostic assessment (slides 16–17).

• Communicating the results from the diagnostic

assessment (slide 21).

Other recommendations related to the key

priorities for implementation are also included
within this slide set.
 Local autism multi-agency
strategy group: 1

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.
 Local autism multi-agency
strategy group: 2
Appoint a lead professional within the strategy group 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 through development of a pathway
to diagnostic services
- raising awareness of the signs and symptoms
- raising professional awareness of the local autism pathway
- supporting the transition to adult services
- monitoring implementation of the pathway through data
collection and audit.
 Multidisciplinary autism team

In each area a multidisciplinary team (the autism team)

should be set up. The core membership should
include a:
- paediatrician and/or child and adolescent psychiatrist
- speech and language therapist
- clinical and/or educational psychologist

And should also include or have access to a:

- paediatrician or paediatric neurologist
- child and adolescent psychiatrist
- educational psychologist
- clinical psychologist
- occupational therapist
- other professionals who may be able to
contribute to the assessment.
 Autism team role : 1

Autism team members should:

• provide advice to healthcare professionals about

whether to refer for autism diagnostic assessments
• decide on assessment needs of those referred
• carry out the autism diagnostic assessment
• share the outcome of the assessment
• share information from diagnostic assessment with
relevant services (if consent given)
 Autism team role: 2

Autism team members should:

• offer information about appropriate services and

support
• have the skills to carry out diagnostic assessments for
those with special circumstances
• consider carrying out the diagnostic assessment jointly
with adult services if a young person presents at the
time of transition to adult services.
 Recognising possible
autism: 1
• Healthcare professionals should consider the possibility
of autism if there are concerns about development or
behaviour, but be aware that there may be other
explanations for this.
• Take the child/young person’s and parent’s or carer’s
concerns seriously.
• Use the NICE signs and symptoms tables to help
identify possible autism.
• When considering the possibility of autism, ask
about use and understanding of first
language.
 Recognising possible
autism: 2
Be aware that:
• signs and symptoms should be seen in the context of overall
development, and will not always have been recognised
• signs and symptoms in older children may have been
masked
• it is necessary to take into account cultural variation, but do
not assume language delay is accounted for by hearing
difficulties or because English is not the family’s first
language
• autism may be missed in those with an intellectual disability
or those who are verbally able
 Recognising possible
autism: 3

Be aware that:
• autism may be under-diagnosed in girls
• important information about early development may not
be readily available for some children, e.g. looked-after
children and those in the criminal justice system
• signs and symptoms may not be accounted for by
disruptive home experiences or parental/carer mental or
physical illness.
 Referring to the autism team: 1
• The autism strategy group lead should ensure that there is a
single point of access to the autism team.

• If there are concerns regarding regression, healthcare or

other professionals should:
- refer children younger than 3 to the autism team if there is
regression in language or social skills
- 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.
 Referring to the autism team: 2
• Healthcare or other professionals should consider
referring to the autism team if concerned about possible
autism on the basis of reported or observed signs and
symptoms.

• When referring to the autism team, include in the referral

letter:
- reported information about signs and/or symptoms
- your own observations of the signs and/or symptoms

• Explain to parents/carers or, if appropriate, the

child/young person, what will happen on referral.
 Autism diagnostic assessment
The autism team should:
• Identify a case coordinator for every child or young person
having a diagnostic assessment.
• Include in every autism diagnostic assessment:
- details about concerns
- experiences of home life, education and social care
- a developmental history
- assessment of social and communication skills
- a medical history
- a physical examination
- systematic assessment for conditions which may coexist
- consideration of the differential diagnosis
- developing a profile
- communicating assessment findings.
 Diagnostic assessment:
individual profile
Consider which assessments are needed to construct a profile for
each individual, for example:
•intellectual ability and learning style
•academic skills
•speech, language and communication
•fine and gross motor skills
•adaptive behaviour (including self-help skills)
•behaviour likely to affect day-to-day functioning and social
participation
•mental and emotional health
•physical health and nutrition
•sensory sensitivities
•socialisation skills.
 Differential diagnoses

Consider the following differential diagnoses for autism and

determine whether specific assessments are needed to help
interpret the autism history and observations:
• Neurodevelopmental disorders
• Mental and behavioural disorders
• Conditions in which there is developmental regression
• Other conditions:
severe hearing impairment
severe visual impairment
maltreatment
selective mutism.
 Diagnostic assessment:
coexisting conditions

Consider whether the child or young person may have

any coexisting conditions, and if suspected carry out
appropriate assessments and referrals.
 Diagnostic assessment:
diagnosis

If there are diagnostic discrepancies, consider gathering

further information and/or carrying out further autism-
specific observations.
Use information from all sources together with clinical
judgement to diagnose autism. Do not rely on any
autism-specific diagnostic tool alone.
Be aware that there may be uncertainty about the
diagnosis of autism. Some children and young people
will have features of behaviour that are seen on the
autism spectrum but do not reach the diagnostic
criteria.
 After the assessment

Immediately discuss the findings sensitively and in person with

the parents or carers and child/young person if appropriate.

With consent, disseminate and share the results with

professionals in education and, if appropriate, social care, so it
can contribute to the child or young person’s individual education
plan and needs-based management plan.

For those with a diagnosis of autism, offer a follow-up

appointment within 6 weeks of the end of the
autism assessment.
 Information and support
Provide individual information on support available
locally for parents, carers and young people with autism.
This may include contact details for:
• local and national support organisations
•organisations that can provide advice on welfare
benefits
•organisations that can provide information on
educational support and social care
Support may also include information to help
prepare for the future, for example transition to
adult services.
 Costs

Potential areas for additional costs locally are:

•recruitment and training of new autism team members, or
training for existing roles.

•an increase in the overall volume of referrals to the autism

team due to improved recognition

•additional costs to communicate the results of autism

assessments, for example school visits by autism team
 Savings

Potential areas for savings locally are:

•increased use of tools to identify children and young

people with an increased likelihood of autism may
decrease the number of unnecessary referrals to the
autism team.

•efficiency savings due to better multi-agency working.

 Discussion
• What actions do we need to take to set up an autism
strategy group locally?

• We may need to use the workforce as flexibly as

possible; what first steps can we make?

• How can we raise awareness of, and aid dissemination

of, the signs and symptoms tables within primary care?

• Who is responsible for looking at and amending the

care pathway to incorporate these
recommendations?
 NICE Pathway
The NICE autism in
children and young people
Pathway covers:
• recognising possible autism
• referral
• assessment
• diagnosis

Click here to go to
NICE Pathways
website
 NHS Evidence

Visit NHS Evidence

To be added- the latest NHS for the best available
evidence image
evidence on all
aspects of autism

Click here to go to
the NHS Evidence
website
 Find out more

Visit www.nice.org.uk/CG128 for:

•the guideline
•the quick reference guide
•‘Understanding NICE guidance’
•costing statement
•audit support
•clinical case scenarios
•signs and symptoms tables
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