Diagnosis of autismBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7413.488 (Published 28 August 2003) Cite this as: BMJ 2003;327:488
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w2 Filipek PA, Accardo PL, Baranek GT, Cook EH, Dawson G, Gordon B, et al. The screening and diagnosis of autistic spectrum disorders. J Autism Dev Disord 1999;29:439-84.
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Individual Level Local Operational Level Local Strategic Level Regional/National Level Legislation/guideline Levers Key NSF Aims IDENTIFICATION Parent concern or professional concern Continuous awareness of pointers to autism through multidisciplinary training Screening not currently recommended
Ensuring training budget and program
NIASA (national working party guidelines)
National screening Committee
Regional support with training
Early identification Primary care contact
This could be health visitor, playgroup, teacher
Primary care person must know how to access support/intervention, usually health service resource
Clear written pathway of referral
Every district to have a strategic planning multi-agency group to develop referral pathway with clarity of access eg. child health services (CDC) for preschool but school age children currently less clear pathway (need to ensure SEN practice fully integrated) Look for sources of Funding from current initiatives eg. use of health act money Easy equitable Access to competent services
Multi-agency strategic planning group
REFERRAL and ASSESSMENT Referral for assessment
Referral for intervention eg playgroup/therapy/ portage for preschool.
Referral acknowledged, waiting times monitored Accurate database and record keeping
Provision of preschool placement/homebased intervention/support that promptly responds to concerns
Waiting times for diagnosis/services monitored Prompt access
Competence of professionals
Therapy /education/support services that meet needs
Assessment for needs and diagnosis
Strengths and weaknesses identified,
Triage by GDA(general developmental assess.) and rapid referral to specialist ASD team if indicated for Multi Agency Assessment
Agreed shared assessments to be used by all team for NIASA recommendations
Multi-agency and multi-disciplinary team available (NIASA recommendations) as in NIASA with team members competent in ASD
Strategic agreement of shared assessments.
Use of shared assessments monitored.
Paediatrician trained in Neurodisability in every district
Training of all professions implemented and monitored eg training for paeds. in neurodisability Dissemination of best practice guidelines on assessment, investigations
Training for standardised ASD assessments
Services for ASD part of services for all children who have developmental concerns but with specific ASD competence. Each professional discipline to define competence and training needs Systematic Multi- disciplinary assessment of needs including
systematic assessment for co-morbid problems of health eg epilepsy, development eg. motor impairments and mental health/behavioural
Themes from ‘framework for assessment’ used.
All agencies represented in assessment
Voluntary agencies and service users represented on strategic planning group
Audit of age of referral and diagnosis
Tertiary services to be available for second opinions/ complex problems on a regional basis. Multi-agency joint paediatric/psychiatric model for health with education/soc. serv. Input recommended
Tertiary services to assist with reliability if diagnoses
Parent/user involvement in service planning and provision
‘Can do’ professional attitude.
Multi-agency integrated working
INTERVENTION / SERVICE PROVISION Parents want practical therapeutic intervention provided which may be provided in parallel and as part of assessment
Diagnosis not a prerequisite for intervention services
Child centred and family needs led services
prompt response to needs for different functional problems eg. behaviour, communication, sleep
Liaison with the LEA; other referrals to appropriate services
All therapists to have ASD competence
Districts to provide for range of functional needs and family support.
Examples are community nurses trained in behaviour, teacher or speech therapist trained in autism communication, PECS etc.
Audit of access to services
Child behaviour (like child health) to be a district wide public health responsibility.
Regions/tertiary services to support district services through seminars, population data collection, joint training of different disciplines
Team around the child
Intervention that matches needs
Parents to have access to information
Key worker roles available
(signpost to services /advocate/initiator or identifier of need/care manager)
Team member to undertake role of information transmission and discussion.
Voluntary agencies/ websites accessed,
Written reports to parents
Parents groups eg. ‘Early Bird’ in every district
Care coordination appropriate to needs. Key worker to be identified
Strategic planning group to identify gaps in services eg. Key worker roles and who might provide service in multiagency local team
Voluntary agencies/ websites accessed,
Care coordination/key worker system supported
Kite marking of best sites on internet
Expert patient model/ personal care plan monitored
Information made accessible
Expert patient model welcomed
‘key worker roles’
Educational services (Preschool/school age) provided which have ASD specialism and knowledge Home liason/visiting therapy package linked to school provision
Appropriacy of provision for education monitored by multi agency working for all children
Suitable range of preschool facilities, either autism specific or autism appropriate to be available from age 30 months
Educational integration with health and social services/voluntary agencies to be monitored—shared databases, shared language,
Whole school attitudes eg. specific ASD understanding by staff, bullying policies/pastoral care tackled through school and society approach to caring about such issues and training. Disability rights/legislation TRACKING AND ONGOING ACCESS TO SERVICES On-going monitoring required for all with ASD diagnosis Key contacts identified and proactive contact system organised ( SEN annual review to be utilised by those with statements and all members of agencies to prioritise attendance) Strategic agencies to work together on triggers for concern/ intervention.
Data collection, identifying children with ASD and services
Life-time care for a life-time disability varying in need and manifestation Family support needs
Sibling needs identified
Housing requirements identified eg. Safe room, garden
Play/leisure/exercise facilities, home and community identified
Need for respite discussed and information given
eg. for respite in the home,
overnight local respite provision (ASD-friendly)
Range of services to be available flexible in use.
Use of initiatives such as direct payments
Housing represented on multi-agency group (this is v unlikely, more likely on local pan-disability service planning group)
Council leisure and private providers represented on strategic planning group
Direct payments Family support
Inclusion for all family members in life’s opportunities.
Housing and leisure services-inclusion in multi-agency planning
Problem solving as needs change eg, mental health or behaviour problem, intercurrent illness, dental care
Child and family needs listened to
Contact/access point to advice eg. Child health re illness
Mental health services
Learning difficulties/problem assessment
Behaviour problems to be tackled proactively—attitude of behav/mental health support for child health services in meeting behavioural needs of ALL children and more specialised mental health team for complexity including mental illness
Strategic planning to ensure that all such services are available, Model of mental health working with child health able to see those with learning disability and without is recommended.
Emphasis on multi-agency shared assessment and working including in school for behaviour problems
Local services to ensure commissioning for specialist services available for some including inpatient psychiatric facilities
Joint budget for placement for some children
Tertiary paediatric neurodisability/CAMHS services available for mixed complex problems/second opinions/outreach services in every region
Monitoring of waiting times and need for such services
of need for specialist out-patient and in-patient services,
specialist schooling and care needs
Mental health services integrated with child health services and available to all children and young people regardless of learning difficulty
Ongoing needs identified promptly and access to competent services provided following principle of specialism within services available to all children and families
TRANSITION Transition needs
Social and leisure
Independent living options
Operational inter-agency transition group to include YP with ASD, identifying and ensuring planning for individual needs
Identification of needs and skills for adult independence and teaching/therapy needs.
Planning task and timing identified (connexions may be useful but only for statemented children/young people)
Strategic group plan for adult transfer and identify medical care for mental health and physical health issues.
Social services identified for ‘high functioning’ for independence support and benefits
Liase with local job centres and housing
Connexions to include responsibility for YP with disability including ASD
‘Prospect’ services to disseminate expertise
Transition to adult health services, jobs, housing, leisure access, social support
- This Week In The BMJ Published: 28 August 2003; BMJ 327 doi:10.1136/bmj.327.7413.0-c
- Letter Published: 22 January 2004; BMJ 328 doi:10.1136/bmj.328.7433.226-a
- Letter Published: 22 January 2004; BMJ 328 doi:10.1136/bmj.328.7433.226
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