Download Issues for the Autism GDG

A Guideline for the
recognition, referral and
diagnosis of autism
In Children and Young people up
to the age of 19 years
With draft recommendations from the adult
guideline
Autism Spectrum Disorder:
• A disorder defined by behavioural symptoms.
• Impairments in social interaction and social
communication combined with restricted repetitive
interests and behaviours, often with sensory sensitivities
and stereotyped mannerisms.
• Manifestations change over time and context and are
often associated with other neurodevelopmental,
mental/behaviour problems and medical symptoms and
conditions.
• A neurobiological condition, heterogeneous in
manifestation and causation
The reason for the guideline
• Variation in availability of diagnostic
services
• Delays in diagnosis affect access to
services.
• Inequalities of diagnosis eg those with
intellectual disability; those with good
verbal ability and average or above
intellectual ability; Girls; those with a dual
language; ‘looked after’ children; those in
the Criminal Justice system
Context
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National context
Prevalence
DSM & ICD diagnostic systems
Categories/ dimensions
A spectrum
Terminology
National Context
• National Autism Plan
• SIGN
• Equity and Excellence/The Health and Social Care Bill
• DfE--SEN Green Paper
• Autism Bill 2009/Autism Act
• Autism Strategy (Dec 2010)
The Autism Act 2009
A legal requirement on all LAs and Trusts to have:
• A lead professional to develop diagnostic and
assessment services in every area with a clear pathway
to diagnosis
• Specialist training for key professionals and improved
awareness of autism in frontline staff through training
• Assessment of individual needs
• Planning relevant services to meet needs including
transition to adulthood
• Gathering local information about numbers and needs
Aim: to improve health and wellbeing of individuals with
autism (Fulfilling and Rewarding Lives)
Prevalence of autism and Asds
• Autism was previously thought to be an uncommon
disorder, but is now thought to occur in at least 1% of
children.
NB 6-14 fold variation in current studies estimating
prevalence rates
? Number of children/YP with similar symptoms without
an ASD diagnosis
DSM 5 and ICD11
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New revisions of the classification systems
Removal of subgroups of ASD
Reduction in domains
Severity specifiers
Expected timing—2012/13
Context
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National context
Prevalence
DSM & ICD diagnostic systems
Categories/ dimensions
A spectrum
Terminology
Context
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National context
Prevalence
DSM & ICD diagnostic systems
Categories/ dimensions
A spectrum
Terminology
Guideline 1 for the
recognition, referral and
diagnosis of autism
In Children and Young people up
to the age of 19 years
The aim
• To make a difference to the current
recognition and diagnosis of autism .
• To make practical recommendations,
using an evidence based approach, for
‘front line’ staff for recognition and
referral and diagnostic assessment.
• To support person centred care and
coordinated service delivery for children
and families
NICE guidelines 2 &3
• 2. Recognition, referral, diagnosis and
managment of adults with autism
• 3. Management and support of children
with autism and their families
What did parents want?
NAS parent survey
1.
2.
3.
4.
A clear pathway pre and post diagnosis
Decreased waiting time
Improved access to specialists
Increased awareness of co-existing
mental/physical health problems and the
uniqueness of each child’s presentation
5. Improve coordinated approach to diagnosis by
different professionals
6. Make diagnosis more collaborative with parents
and improve support during and after diagnosis
What did Community Paeds
say?
1. Do not produce an unworkable guideline or
suggest a diagnostic process that increases
waiting times
2. Clarify terminology to produce some
consistency across professionals noting that
strict diagnosis is a ‘where do you draw the line’
problem which may not reflect a child’s needs.
3. Give guidance for difficult differential diagnoses
eg attachment disorders and ‘quasi-autism’.
4. Clarify any biomedical investigations needed
NICE GDG decisions
• To use the term autism in the NICE guideline to
refer to ‘autism spectrum disorders’ used as an
umbrella term, synonymous with all diagnosed
autism spectrum disorders.
• To use ICD10 and DSM IV but have regard to
the future changes in ICD11 and DSM 5
• To conceptualise diagnostic assessment as a
process that considers differential diagnosis, coexisting conditions and enables construction of a
profile of the CYPs strengths and weaknesses,
so that a plan of needs can be developed taking
into account family and educational context.
Guideline Key questions:
1. What signs and symptoms should prompt
recognition of autism and referral for diagnosis?
2. What is core to autism diagnosis? What tools
should be used for autism diagnosis if any?
3. What biomedical investigations should be
recommended as part of autism diagnosis
4. What coexisting conditions should be systematically
assessed
5. What information/support should the
child/YP/parents be given during and following
diagnosis
Key Recommendations
In every area: a strategy group; multi agency,
multiprofessional autism including
Commissioners, managers and clinicians from
health, education and social care, parents/users
and the voluntary sector responsible for :
1. Establishing a Lead professional for autism diagnostic
assessments for all ages and all levels of intellectual
ability
2. Development of a Pathway to diagnostic services
3. Raising awareness of autism through multiagency
training
4. Audit
5. Data collection
An Autism Team
May consist of few or many members who
may be part of other teams but have:
Autism specific skills and competences in
diagnostic assessment
Core team membership for each autism diagnostic
assessment Doctor (paediatrician or child &adolescent
psychiatrist), SLT, Psychologist (EP or Clin),
Additional desirable team members: OT, EP or Clin psych
–(whichever not above), paed or psychiatrist—(whichever not above)
Others depending on local circumstances eg teacher,
specialist nurse, social worker
Recognition and referral
• Awareness raising through multiagency training
• Tables of signs& symptoms for various ages
• A clear local referral pathway and single point of
referral for autism diagnosis age up to 19
• ‘Screening questionnaires’ can be used but no
evidence to recommend routine universal use
• School information to be sought in all with
parental permission-no specific tool recommended
CYP guideline-referral
Children under 3 years who regress in
language and/or social skills
In other situations:
• Severity, pervasiveness, impact and duration of
signs and symptoms
• Concern shared by parents and professionals
• Presence of factors increasing prevalence of
autism
• Liklihood of alternative explanation of behaviour
Adult Guideline
Identification
• Persistent difficulties in reciprocal social
engagement or social communication AND rigid
repetitive behaviours or resistance to change
AND one or more of:
• Problems in obtaining or maintaining employment or
education
• Difficulties in initiating ir sustaining social relationships
• Previous or current contact with CAMHS or LD services
• A neurodevelopmental disorder
Adult Guideline-referral for autism
assessment
Two or more of:
• Poor reciprocal social interaction including being aloof,
indifferent, social approaches that are naïve or unusual,
interactions to fulfil needs only,
• Lack of responsiveness to others social approaches
• Little or no change in behaviour in response to social
situation,
• No or limited demonstration of social empathy,
• Rigid routines and resistance to change,
• Marked repetitive behaviours when under stress or
expressing emotion
• In average ability clients—can use AQ 10 (score >6)
Adult Guideline
A comprehensive assessment should be :
• Undertaken by professionals who are
trained and competent
• Be team based drawing on a range of
professions and relevant skills
• Involve an informant/ family member or
other or use documentary evidence of
current/past behaviour and early
development
Case Co-ordinator
• A Case coordinator to be appointed from within
the team to be point of contact for each CYP and
family and signpost support during process of
assessment, coordinate information gathering
and subsequent care plan
The following elements to be included
in every autism diagnostic assessment:
• detailed enquiry about parent or carer concerns and if appropriate
the child or young person’s concerns
• a medical history including prenatal, perinatal and family history past
and current health conditions
• the child's or young person's experiences of home life, education
and social care
• a developmental history focussing on developmental and
behavioural features consistent with ICD-10 or DSM-IV criteria
(consider using an autism-specific tool to gather this information)
• assessment through interaction with and observation of the child or
young person of their social and communicative skills and
behaviours focussing on features consistent with ICD-10 or DSM-IV
criteria (consider using an autism-specific diagnostic tool to gather
this information).
• consideration of differential diagnosis
The following elements to be included
in every autism diagnostic assessment:
• A physical examination.
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No routine medical investigations in autism
Genetic tests as advised by local service
Other tests according to clinical judgment and symptoms
• A systematic assessment of co-existing conditions
• communication of assessment findings with parent/carer
and where appropriate, the child or young person
• A profile of the individual’s strengths,
skills, impairments and needs that can be
used to create a needs-based
management plan taking into account
family and educational context.
Develop a Profile of strengths, skills, impairments and
needs in the following to inform the management plan
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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 hypo and hyper sensitivities
behaviour likely to affect day to day functioning and
social participation
• socialisation skills.
In both the FAMILY and EDUCATIONAL CONTEXT
Adult guideline
During comprehensive assessment , assess
the following risks:
• Self harm
• Rapid escalation of problems
• Harm to others
• Self-Neglect
• Breakdown of placement
• Exploitation or abuse by others
Following assessment
• Immediate ‘feed-back’ (involving CYP if
appropriate)
• A written report (a health passport)
• (Formulate a management plan including a crisis
plan if needed)
• Follow up appt within 6 weeks to discuss
findings
• Disseminate/share findings with all relevant
services, with permission, which may include a
school visit
• Signpost support services for family both
statutory and voluntary
Principles of Care in guideline
• Person centred
• Respectful and inclusive/partnership
• Professional knowledgeable about autism,
course and impact of the condition on the
individual, including gap between
intellectual skill and adaptive function, and
on family
• Impact of environment on autism
Potential areas for additional costs
locally are:
• recruitment and training of autism team
members.
• 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:
•efficiency savings due to better multiagency working.
What is needed to effect change?
• Leadership at national regional and local
levels
• A local strategy group including users
• Commissioners contracting for pathways
and outcomes
• Clinicians/managers working together from
health/social care and education
• Audit/inspection/tariffs?
Translates into
• More with the same not more of the same
• Change clinical practice
• Redesign care pathways
• Focus on integrated care
• Use workforce as flexibly as possible
• Share back office staff and functions
While retaining the High quality care :
• Patient centred
• Specialist Competence
• Continuity of care
NICE
Pathway
• The NICE Pathway
published in
October 2011
covers:
•
recognising possible autism
•
referral
•
assessment
•
diagnosis
Click here to go to
NICE Pathways
website
NHS Evidence
To be added- the latest NHS
evidence image
Visit NHS
Evidence for the
best available
evidence on all
aspects of autism
Click here to go to
the NHS Evidence
website