Intended for healthcare professionals

Extra references and care pathway

Care pathway and service needs for children and young people with autistic spectrum disorder

Additional references

w1 Stone WL, Hoffman EL, Lewis SE, Ousley OY. Early recognition of autism: parental reports vs. clinical observation. Arch Pediatr Adolesc Med 1994;148:174-9.

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.

w3 Rutter M, English and Romanian Adoptees (ERA) Study Team. Developmental catch-up and deficit following adoption after severe global early deprivation. J Child Psychol Psychiatry 1998;39:465-76.

w4 Kim JA, Szatmari P, Bryson SE, Streiner DL, Wilson FJ. The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism:Int J Res Pract 2000:4:117-32.

w5 Emerson E. Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability. J Intellect Disabil Res 2003;47:51-8.

Care pathway and service needs for children and young people with autistic spectrum disorder (Posted as supplied by author, Gillian Baird)

Individual LevelLocal Operational LevelLocal Strategic LevelRegional/National Level Legislation/guideline LeversKey NSF Aims
Parent concern or professional concernContinuous awareness of pointers to autism through multidisciplinary trainingScreening 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 moneyEasy equitable Access to competent services

Multi-agency strategic planning group

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 monitoredPrompt 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

Quality control

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 knowledgeHome 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
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

Respite 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)

sibling groups


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 paymentsFamily 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

Dental 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 

National monitoring

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 needs

Social and leisure

Jobs/ FE

Independence training

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