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Data Collection and Management

Please be aware that this section contains information prepared in 2009 and may now be out of date. Some links may no longer work. We are reviewing this section.

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General Data Collection

The Children Act 1989 requires every local authority to open and maintain a register of disabled children within their area. This information should include children on the autism spectrum and be used for the purposes of planning and providing appropriate social services. The registration of disabled children by parents is entirely voluntary, and is not required as a condition of receiving services from local authorities.

There is a model health record on which these systems are based and further consideration is being given to adapting the model to maximise its usefulness as part of the development of the National Service Framework (NSF) for Children. An information management and technology strategy is under consideration. This will include identifying information requirements for the delivery of the NSF.

Education Data Collection


At present many local authorities do not collect data in a way which allows them to identify accurate educational placement, as records are often not kept in a way which allows such an analysis. Local authorities may wish to consider the benefits of statistical collection that does allow them to drill down into data in this way.

Nationally, data collated and analysed by the DCSF relies on that gathered through school data returns. Whilst this indicates broad trends and enables some comparisons with other areas, it has limited strategic value at a local authority level in the ongoing development of an appropriately structured continuum of provision.

Nationally collated data is organised in some areas into regional data sets. Using the annual SEN statistical release, it is possible to compare regional profiles, and those of individual local authorities within a region. There is a wealth of data about disability, but little that identifies children on the autism spectrum separately. The learning and support needs of children on the autism spectrum can be different from children with other types of SEN and so ideally separate data is needed to assist planning.

Some local authorities have conducted an audit to record how many children on the autism spectrum are known to the authority. These figures can be used to support the case for the allocation of resources and also aid forward planning. The number of pupils found by age group will differ as some very young children will not yet have been diagnosed and some older pupils may not have received a diagnosis yet, as difficulties may not become apparent until, for example, transition from primary to secondary school.

To obtain data on outcomes for pupils attending different provision, it would be useful if local authorities used a tracking document.  This would be completed on the pupil’s first admission to school and then would follow the pupil and be completed at each transfer to a different school. The forms could be held centrally and data analysed at intervals to yield information on the progress of pupils on the autism spectrum for evaluation and planning purposes within an authority and at a national level. Having good and comparable, retrospective data throughout the UK, would add substantially to our knowledge on the educational routes which pupils follow and on the outcomes at different phases of education and, ultimately, in adult life.

Data Collection Good Practice

  • There is a need for improved data on the prevalence of children on the autism spectrum. Data should be collated to give an overall figure for the local authority and a picture of the types of provision in which children are placed. This data will help to analyse placement trends to inform the type of support and training required to sustain school placements
  • Better use could be made of data collected from Local Authorities and schools by the DCSF, to assist local authorities in their strategic role of maintaining an appropriate and well supported continuum of provision at Local Authority level
  • Similar data sets to be developed for children at the Foundation stage who attend settings in the private, voluntary and independent sector
  • Data should be collected regularly, for example annually, and any support service specialising in autism should take part in the collection and analysis of the data.
  • The data collected should be analysed for trends in, for example, the age at identification, gender balance, sub-groups etc and the information used to inform policy.
  • Estimates of future demand should be made on the basis of accepted prevalence rates.
  • The data should be collected and shared with regional partners and used to promote co-ordinated regional practice.

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Educational provision for children and young people on the autism spectrum living in England: a review of current practice, issues and challenges The Autism Education Trust (2008)

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Case studies


Calderdale ASD Service keeps a detailed database of all children in the Authority on the autism spectrum. This is used to ensure provision is accurately targeted. For example, when significant numbers of children were being diagnosed at KS2, the number of outreach teachers working at this Key Stage was increased. The data has also been shared with colleagues in the Health Trust to help them plan services that will be required for young adults.

Derbyshire is working to improve the joint estimation of levels of need. The number of children in, or in transition to, mainstream secondary placements, has grown steadily. From the numbers in primary schools, Derbyshire has identified that this growth will continue. With good support from the local authority many mainstream secondary schools can deliver successful outcomes for students on the autism spectrum. However, transitions can be hard for children on the autism spectrum as they may find the more complex environment of a secondary school challenging, for example, increased number of students and teachers. This can result in the mainstream placement failing, and for some children with autism and Asperger's syndrome, this may result in a move to day special school placement outside Derbyshire.

Derbyshire decided that it would be helpful to develop provision in mainstream schools for students who need more than can be made available in every school. Extra national funding for education and the development of the Private Finance Initiative has increased the opportunities for development of provision.

The schools are working with the LA, health, social services, parents and voluntary organisations, in the detailed design of two new facilities, including the procedures and criteria for admissions, and to develop training for the whole school staff team. The aim is to develop schools which are truly "autism friendly" and to make sure all staff are autism aware.

One Midlands local authority has driven the development of a county-wide, multi-agency strategy with the clear intention of ensuring service provision is able to meet current and future needs. The strategy has been implemented on a strong foundation of effective data management.
Through careful analysis, the multi-agency Autism Strategy Group knows:

  • The number of children in the area with a diagnosis of autism has increased from 361 in 1999 to 1200 in 2007 (a threefold increase)
  • The exact nature of educational placement attended by all the children, including PRUs, different early years settings and in a Further Education placement
  • Numbers by Foundation Stage year and year group
  • The number of requests for specialist educational support
  • The numbers and percentages of permanently excluded pupils on the autism spectrum, including whether the pupils were in receipt of specialist support  

This information assists in the targeting of support at critical stages in a pupil’s educational career (e.g.: phase transfer) and enables movement between sectors of education to be monitored. Strategic performance indicators are set in areas where there is a risk of fracture to a pupil’s continuity in education (e.g. the percentage of pupils supported in the Early Years who make a sustained and successful transition to mainstream primary). (Source Autism Education Trust 2008)

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