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Pathway Overview
Info for Referrers:
Core features
Suspected ASD Other features
Mental health
problems
Presentation in
Primary Care
Info for
Carers/Patients
Useful contacts
Initial screen
Screening
Referral Criteria
Standard Diagnostic
Workup
Outcomes
References
ASD diagnosis
confirmed
Needs Based
Assessment
Intervention Package
Stepped care model
Discharge
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Background
Autism is an umbrella term for a group of complex neuro-developmental conditions,
characterised by qualitative abnormalities in reciprocal social interaction, social
communication, imaginative activity, and a restricted, repetitive repertoire of interests
and activities. These characteristics are known as the triad of impairments (Wing
(1979)). Autism Spectrum Disorders (ASD) and are found throughout the whole IQ
range, from profound intellectual disability right up to superior levels of intellectual
functioning. Presentation will vary in line with intellectual level, however the core
features described above will be present in all cases.
Table 1 below provides an overview of the presentation of ASD across the IQ range.
Table 1
Feature of ASD IQ Range
Severe/Profound ID Normal/Superior IQ
Social Impairment Aloof Passive Active but odd Overformal, stilted
Communication Mutism/ Echolalia Difficulties with humour/
prosody
Behaviour Simple stereotypies Complex rituals
Sensory Problems Hyposensitivity Hypersensitivity
Some service users, carers and professionals may dislike the terms ‘disorder’ and
‘impairment’ and prefer the general term ‘Autism Spectrum Conditions’, taking the
viewpoint that having Autism is being different, not abnormal. We fully respect these
viewpoints; however, for the sake of consistency in this document, the generally
used medical terms will be retained.
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Core impairments
Social interaction difficulties
This refers to an impaired ability to engage in reciprocal social interactions. A
minority of individuals seem aloof and uninterested in people. Some passively accept
the attentions of others but do not reciprocate, lacking the ability and/or desire to do
so. Others may desire contact, but fail to understand the reciprocal nature of normal
social interaction. In consequence their attempts at social interaction may be clumsy,
awkward and one-sided. The most able individuals and those who have received
training and support because of early recognition may have learnt some ‘social
norms’ but still struggle to apply them appropriately, fearing making errors, and thus
coming across as overcorrect and stilted in their interactions.
Imagination impairment
Children with autism have great difficulty thinking imaginatively. This is demonstrated
in childhood by difficulties in pretend play, which will be absent or repetitive in
children with autism spectrum disorders. Whether this is directly related to the
development of rigid and repetitive behaviours has not been established. In later
years this can be seen in difficulties with areas such as understanding implied
meanings in what other people say, taking account of other people’s feelings,
engaging in social chit-chat, and ability to predict the possible outcomes of a
situation
Impairment of emotions
Children with autism have great difficulty in recognising and expressing their own
emotions and those of others. This is demonstrated in an inability to describe
happiness, enjoyment, jealousy and even depression and anxiety and in the
sometimes complete lack of altered facial expression, gesture, altered vocal
intonation. Subtle nonverbal signs of emotions expressed by others will be
completely missed and more obvious expressions in a carer such as anger or
tearfulness may be ignored or may produce negative and seemingly callous
reactions. More able individuals with ASD may develop intellectual empathy and
understanding that is psychologically, whilst still not being able to register emotional
empathy in a natural automatic way.
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Other key characteristics of ASD
Adherence to routines
People with an ASD may have rules and rituals (ways of doing things) which they
insist upon. They may prefer to order their day to a set pattern and any unexpected
change in routine can cause them anxiety or upset. These may appear to be, but are
actually not, obsessions.
Special interests
People with an ASD may develop intense, often obsessive interests. Occasionally
these interests are lifelong; in other cases, one interest is replaced by an
unconnected interest. For example, a person may focus on learning all there is to
know about trains or computers. Some are exceptionally knowledgeable in their
chosen field of interest. With encouragement, interests and skills can be developed
in some individuals to enable them to study or work in their favourite subjects.
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Mental health issues
Evidence from clinical populations shows that mental health difficulties are common
among people with an ASD. Attention Deficit Hyperactivity Disorder can be
diagnosed in approximately a quarter of children with ASD and there are higher
levels of anxiety and depression than in other children. The presentation of
depression and anxiety can differ to that in the general population and clinicians
need to be aware that they can as a cause for any change in behaviour or
functioning. These co-morbid presentations can be easily missed and the behaviours
attributed to the ASD itself. Repetitive and routine-bound behaviours may be
attempts to reduce anxiety levels, while challenging behaviours e.g. aggression and
self-injury may be a response to increased anxiety levels. Although not necessarily a
mental health problem, sleep difficulties are very common.
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Screening
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Screening
Following referral a professional who will be the coordinator for the child’s
assessment should be identified from the professionals involved with the family and
child. The coordinator should be someone who is working closely with the family and
can be self-appointed (with the family’s consent). Once the coordinator is identified
then the other professionals and parents/carers should be informed (preferably in
writing) by the coordinator.
The coordinator should support the family in involving the child or young person in
the process.
Referral Criteria
Children with difficulties with social communication/ social interaction should be seen
by either CCHS or CAMHS to consider and exclude any additional health needs or
other diagnosis.
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b. Referrals to CAMHS should be considered if
i. If the letter clearly indicates that the referral should have gone to the other
service, then the referral letter should be sent across to the other service
with a standard note sent to the referrer to let them know.
ii. If after assessment by one service it is felt that there are concerns
suggesting that the other service should be involved, then a referral letter
should be sent to the SPA for the other service.
If Speech and language therapy are not involved with a child, then referral to Speech
and language therapy should be considered in accordance with SALT referral
guidelines.
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Initial Assessment
A full diagnostic workup may take several hours and may be completed by the
clinician who is involved in the initial assessment or may involve further clinicians
(see below) depending on the experience and competence of the initial clinician in
the diagnosis of ASD. There may be some minor differences between processing of
the referrals sent to different parts of the service but the overall principles should be
the same.
The diagnostic process will commence with a clinical interview with the child and
their family / carers as appropriate. The aim of this process will be to establish the
nature of the individual’s difficulties and whether an ASD is a likely diagnosis. The
use of checklists and quick screening instruments may be used to assist the clinician
in establishing whether an ASD or significant traits are present and warrant further
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detailed assessment. The tool chosen will depend upon the clinical presentation of
the individual coming for assessment, including their general ability and
communication level.
In some cases the diagnosis will be fairly straightforward to establish using clinical
interviews with the individual and family members / carers, along with clinical
observation. Reports of the child’s behaviour in their usual environments from other
professional groups should be sought at this time.
Clinical observations are ideally carried out in the individual’s usual environments but
this is not always practical, and the use of structured observation assessment
schedules, for example the appropriate ADOS module (according to the Child’s
communication level) can be undertaken in the clinic setting which can aid diagnosis.
In some cases the ADOS will be completed before the multi-agency meeting and
sometimes following this depending on the clinical situation.
If the diagnosis remains unclear at this point and the initial clinician requires further
assessment of the child then the case may be transferred to a clinician with a special
interest in ASD. This individual will have a higher level of skill for making the
diagnosis.
This should be in the individuals own service however if another part of the service is
felt more appropriate i.e. due to complicating factors such as mental health problems
then the referral may be transferred.
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This clinician will review the previous assessments and any reports obtained from
other professionals involved with child. They will then make a further clinical
interview/s of the child and family taking a full developmental history and obtaining
any supporting evidence which will confirm or refute the diagnosis.
The clinician should consult all other agencies involved with the child, with parental
permission, as part of the assessment process and the professionals have a duty to
respond to requests for such consultations in a timely manner.
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The information gathered should include observations in, and/or information from,
different settings and should also include information on strengths and interests.
In the event that a multiagency meeting cannot be held within a reasonable time
frame, then
the clinician should liaise with the other professionals to let them know who is
involved and so enable the full gathering of information from all the different
agencies involved (via reports or telephone). When professionals supply information
via reports or telephone (rather than via a meeting), it is essential that the
professionals view of whether there are difficulties (or not) with the child’s social and
communication skills, should be clearly indicated. The clinician should inform the
other professionals involved if there is any difference of opinion when they collate the
information.
If the diagnosis is made at this point the meeting or liaison will help to identify the
roles and actions to be undertaken across the agencies involved with the child.
If the diagnosis is not felt to be ASD the child and family will be explained the
reasons for this conclusion in a face-to-face meeting and signposted to the
appropriate service.
If the diagnosis remains unclear then further assessment is required this will need a
referral to the Complex Care Forum if the case is within the Community Child Health
Services or the generic (non LD) CAMHS teams.
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Complex Care Forum
In complex cases where diagnosis is unclear, is in dispute, or where significant risk
issues are evident, a more in-depth diagnostic workup is indicated. This forum
composes of clinicians from both CCHS and CAMHS who can review the case and
suggest additional interventions.
OUTCOMES
ASD IDENTIFIED
Following the assessment process a multiagency agreement should be reached
before families are informed of the diagnosis. This may be at the multiagency
meeting or through liaison with all the professional involved. In the event if a
disagreement then this should be resolved at the multiagency meeting or a referral
can be made to the Autism Reference Group.
Once the professionals involved in the assessment are satisfied that any
uncertainties have been resolved, and that Autism Spectrum Disorder is identified,
this should be confirmed in a face to face meeting with the parents/carers.
There should be a discussion with the family about how and when to share the
outcomes of the process with the child/young person, taking into account their age,
developmental level and parental wishes.
A care plan is prepared and implemented along with an education plan where
appropriate.
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ASD EXCLUDED
Once the professionals involved in the assessment are satisfied that any
uncertainties have been resolved, and that an Autism Spectrum Disorder is NOT
identified, then this should be confirmed in a face to face meeting with the
parents/carers. The strengths and difficulties of the child should be indicated and any
alternative diagnosis given. The information should be confirmed in writing to the
parents/carers and all professionals. Appropriate support should be suggested
where indicated.
Source details
Diagnostic Interview for Social and Communication Disorders (DISCO): 11 th
edition
Wing, L (2003). London: National Autistic Society.
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Assessment of Need
The assessment of need may highlight certain areas requiring specialist intervention
and support, for example ADHD or anxiety. Referrals should be made to the
appropriate organisations for these to be further assessed and managed, for
example anxiety managed in CAMHS.
Post diagnostic education opportunities vary at present between the pathways with
parental education supported in both CAMHS and CAMHS LD but unavailable in
CCHS.
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Intervention Process Overview
P
r
o Tier 3 explained
Tier 3 Professional roles
b
l explained- Tier3
e
m
S
o
Tier 4A explained
Tier 4A
l
Professional roles
v
explained – Tier4A
i
n
g
Tier 4B explained
Tier 4B
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Stepped Care Model
Interventions on the Autism Pathway, in line with the other Clinical Pathways in LPT,
follow the Stepped Care Model. A detailed description of what each professional
group offers at each tier and the competencies necessary for this can be found in
Appendix D.
Tier 4
Tier 3
Tier 2
Tier 1
Children in this tier are either able manage their difficulties independently, or with
support from their carers. Local and national voluntary organisations are the main
sources of information and support at this level, for example providing general
information about ASD, signposting to resources, support groups for individuals and /
or family members and carers, social interest and activity groups, and information
about education and employment.
At this level on the Pathway, specialist healthcare services offer education and
training to professionals, carers and service users; and general advice and support
to professionals working with individuals with ASD.
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Practical Problem Solving
Common and less severe problems may be seen affecting a child who could have
features of an ASD, which it may be possible to resolve satisfactorily with fairly
simple short-term measures. Difficulties in social understanding, two way
communication, excessive rigidity in dealing with others or related behavioural
problems might be described or observed. Such problems can affect children at
home with the family, at school, or in leisure settings.
A first step towards attempts at solving the problem might, for example, involve the
carer/parent, reading or otherwise considering some general information about ASD
and considering whether that might help them to better understand the presenting
problem. The NAS has excellent descriptive material in the form of leaflets and on its
website.
A second step might involve addressing the problem in a direct, concrete, practical
and clearly communicated way that reduces demands and expectations of the
affected child. This might include reducing non-essential social contact time and
social expectations, help with organising, timetabling and having an uninterrupted
routine, practical support to help the person engage with a harmless and for them
enjoyable special interest, and using written (e.g. email or picture symbol) rather
than verbal, face to face or telephone communication.
Because a full assessment may take some time to be provided, a further step, or an
alternative step, could be to signpost the affected family to sources of support such
as local groups for parents/carers.
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encountered in ASD; for example a GP may give advice on management strategies
for sleep difficulties. Social care can provide advice and help to those families who
are struggling to meet the needs of the children particularly if the children have a
significant learning disability.
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In the Community Child Health Service help can be provided from a number of
different professionals including paediatricians, nurses, occupational therapists, and
speech and language therapists. Identification of problems in the younger age group
and co-existing physical problems such as coordination problems, sensory
processing and speech problems tends to be assessed by this service in addition to
managing co-morbid neurodevelopmental disorders.
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For those without a learning disability who develop a significant mental health
problem which requires intensive assessment or treatment due to the risk to the child
or others, an admission to the generic inpatient unit, Oakham House is possible.
Although this is not ASD specific it can provide the appropriate setting for the
management of certain problems.
Tier 4b
This applies to those individuals with levels of challenging behaviour / risks that
cannot be managed within local services. Such individuals are currently placed in
out-of-area services.
Note: Individuals are likely to move up and, hopefully, down the tiers over time,
depending on their level of needs. They may also be on several tiers
simultaneously; depending on the range of needs present at any given time.
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2. Work in Primary and Generic- Allowing Training available
partnership with secondary care adequate time, in the educational
families of children staff, Social care using appropriate sector. Limited
with ASD, taking services. communication training in health
time to develop a Educational staff strategies and sector
trusting ensuring that
relationship environment is
autism friendly
3. Ensure that Secondary care All staff to be Limited access
comprehensive staff, Social care aware of the range through health
information on services services available settings.
local and national Educational staff Information
services for, available from
support and local voluntary
information is groups and
available in an education
appropriate
language or format
(visual, verbal and
aural, easy read,
colour and font
formats)
4. Staff specifically Secondary care Skills to Specific training
dealing with autism staff, understand unavailable in
need to have a Educational staff problems caused health
greater directly by autism
understanding of and ability to Likely GAP IN
autism and its differentiate this PROVISION at
impact on from problems present which will
functioning and arising due to co need addressing.
associated co- morbid conditions
morbidities Skills to
understand,
assess and
manage
communication
difficulties and
sensory issues
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5. Comprehensive
assessment using Psychiatrists Specialist- Ability Formal training in
structured Psychologists to take a detailed DISCO & ADOS
diagnostic tools, SALT developmental underpins this role.
consider OT history , observe
differentials, Nurse the individual in
assess risk. relation to the
profile of problems
that people with
ASD experience
and ability to
formulate and
arrive at a
diagnosis
6. Develop risk Psychiatry, Enhanced / Profession-specific
management plan, Psychology, Specialist training, and
develop crisis nursing CAMHS depending on clinical experience.
management plan OT,LD team play a complexity and risk
role in risk and level.
crisis management
but are guided by
trained staff who
diagnose ASD
7. Develop an Psychiatrists Enhanced- Dependent on
individualized care paediatricians Ability to put in an clinical experience.
plan that is Psychologists individualized care Training probably
accessible to the Community Nurses plan in an required.
person/ family SALT, OT accessible format
8. Consider Recognition- Generic- Specialist Services
Functional analysis Primary Care, Recognition of already providing
if there is Psychiatrists, presence of CB such interventions
challenging Psychologists, and need for GAP IN SERVICE
behaviour Community Nurses further identified in
Provision- assessment. generic CAMHS or
CAMHS LD Specialist-Training CCHS for able
service in Functional children with ASD
Analysis and behavioural
issues without
associated MH
difficulties.
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9. Interventions to Psychologists Enhanced - Limited availability
improve social Psychiatrists Training in in many services.
interaction Paediatricians Functional Educational
Community Nurses analysis, social services provide
LD autism stories, social skills most of this
SALT, Outreach training and intervention.
Education mentoring
Limited availability
in health services
10. Interventions to OT Often provided in
develop skills for Education OT training educational
daily living Education training settings.
11. Interventions to Probation, Police, Enhanced- Liaison between
develop anti- Primary and Awareness of ASD probation and
victimisation skills Secondary Care, specific health services is
Social Care, vulnerability important
Safeguarding issues, Current training
teams Safeguarding packages to be
training reviewed to ensure
vulnerability issues
covered.
12. Interventions to CN Enhanced - GAP IN SERVICE
develop anger Psychology Tailoring of in CCHS. Limited
management skills CAMHS LD programs to needs availability in
of the individual CAMHS
with ASD
13. For children with Secondary care Specialist- Generic CAMHS
autism and staff Allow equal access and CAMHS LD
coexisting mental to different Services to provide
health disorders, modalities of
offer a range of psychotherapy
psychosocial through
interventions reasonable
informed by adjustments
existing NICE
guidance for the
specific condition.
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14. Interventions for Secondary care Generic - Training provided
families and carers staff & social care Signposting, in house.
information
provision,
knowledge of
support groups
Specialist -
Psycho-education
available for
parents in CAMH
services
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Discharge from the Pathway can occur at any stage of the process; however
common points are as follows:
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Professional Roles
Having established the key skills required for working with people with ASD, it is then
important to clearly delineate their roles and responsibilities. This section of the
Pathway document sets out the roles expected of child health and social care
professionals; other organisations will clearly have their own criteria, or should be
encouraged to develop them.
TIER 2
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G. LD Autism service Education and support: LD-related autism training in
conjunction with health and social care colleagues.
Signposting to LPT Asperger’s training where appropriate
H. Social care Education and Support / Assessment: Single Point of
Access – for new referrals: information giving and
screening for assessment.
Assessment: Education & Disabled Children’s Team –
Education Statement triggers identification at year 9
under the Disabled Persons Act 1986 for assessment
during the last year at school for services over the
transition into adult services.
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B. Psychology Assessment: Initial assessment in teams
Assessment of key psychological difficulties in ASD
Neuropsychological assessment to inform diagnosis and
profile further needs and post-diagnostic support.
Intervention: are based on the formulation. They may
address core features of the ASD e.g. impaired social
relationships / poor social communication, or related
difficulties e.g. depression, anxiety, social phobia, anger,
poor self-esteem and forensic issues.
Psychotherapeutic approaches include CBT and
behavioural approaches;
Post-assessment follow-up support and intervention:
anxiety management.
Education and support: Interventions may be directly
with the child or with the system supporting that child.
Supervision and support can be provided for other
members of the teams to work with the mental health
needs of those with ASD, for example to carry out single
approach psychotherapies such as skills-based CBT;
behavioural interventions; psycho-education.
C. Nursing Assessment: Initial assessment in teams and
assessment of co-morbid conditions
Intervention: Support the individual to understand their
condition. Provide modified CBT. Prescribe certain
treatments for example ADHD treatments. Behavioural
analysis with CAMHS LD. Assessments of sleep
Education and training: Provide advice to other
professionals e.g. in mental health services and support
them to develop guidelines to care for individuals with
ASD, then support the formulation and further skill
development.
D. Speech and Assessment: Communication; eating and drinking
Language therapy difficulties,
Intervention: Development / support with introducing
communication systems/guidelines; development /
support with introducing eating and drinking plan
Education and training: Training for staff / carers where
appropriate
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E. Occupational Assessment: ADL (personal, productive and
therapy independence); sensory assessment (each modality);
MOHOST (model of human occupation screening tool);
environmental assessment; AMPs (assessment of
process and motor skills), activity analysis / meaningful
activities, interest checklist; consider future
planning/accommodation needs. (Depends on service OT
is based in)
Intervention: Practical input: modelling, providing
guidelines to problem solve / promote skills and graded
tasks, goal setting, provision of objects of
references/visual timetables, anxiety management,
relaxation techniques, anger management.
Education and training: Training for staff / carers where
appropriate
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C. Community Assessment: Lead or contribute to a robust risk
Nursing assessment, often acting as CPA coordinator.
Intervention: Intensive direct support could be required
on a daily basis. Work within the MDT to continue to
refine the proactive, active and reactive guidelines.
Liaise with other agencies ie social services, police,
probation, housing etc. Facilitate others in delivering
longer term support packages using psychological and
behavioural approaches.
Education and training: (In CAMHS LD) Provision of
more advanced training for other members of the MDT
and external partners.
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It is a spectrum condition, which means that, while all people with autism share
certain areas of difficulty, their condition will affect them in different ways. Asperger
syndrome is a form of autism.
More information on the diagnosis, management and useful resources can be found
on http://www.autism.org.uk/
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Useful Contact Details
Specialist Healthcare Services
CAMHS Outpatient Teams
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Education Services
Contact: The Learning and Autism Support Team, New Parks House, Pindar
Road, Leicester, 0116 225 4800
The Psychology Service, Collegiate House, College Street, Leicester,
LE2 0JX
Tel 0116 221 1200
Email psychology@leicester.gov.uk
Contact: The National Autistic Society, 393 City Road, London, EC1V 1NG.
Telephone: 020 7833 2299
Fax: 020 7833 9666
Email: nas@nas.org.uk
Website: www.autism.org.uk
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Market Harborough Spectrum Support Group
Telephone: 07831349574
Group email: spectrummh@yahoo.co.uk
NAS Leicester
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Contributors and Acknowledgements
Acknowledgements
Thanks go to all who have contributed to the development of this Pathway. Firstly,
thanks to all the members of the Pathway Group for their time, effort and
enthusiasm.
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