Autistic Spectrum Disorders and Information Sharing and Assessment: Opportunities to make a difference

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Abstract
This article presents information collected during a needs assessment of children with Autistic Spectrum Disorders (ASD) to highlight the issues facing children with ASD and their families. It identified fragmented support, a lack of appropriate support, and poor knowledge of the disorder among some professionals. The article considers how the Common Assessment Framework and Lead Professional initiatives might improve services to children with ASD and highlights issues for consideration in the implementation of these initiatives.

This article uses data collected from a needs assessment of children with Autistic Spectrum Disorders (ASD) in South Wales, to consider the difficulties facing children with ASD in obtaining appropriate support. It considers what impact the CAF and LP could have on providing services to this group and the challenges affecting these initiatives.

‘Every Child Matters’ (2004) (1) requires Local Authorities and their partner agencies to introduce Information Sharing and Assessment (ISA); a set of processes to support earlier identification and to facilitate integrated working, that is key to effective prevention and better outcomes for children. The Common Assessment Framework (CAF) and Lead Professional (LP) are two components within the ISA requirements that should assist with earlier intervention and the effective delivery of services.

The CAF provides a common method of conducting assessment across all children’s services and local areas. CAF involves a holistic assessment that considers a range of the child’s needs and co-ordinates the assessment and information sharing between relevant practitioners. A LP will be introduced when a child with additional needs requires support from more than one practitioner. The LP is a single point of contact, who provides support and helps navigate the child and family through services. CAF and the LP aim to introduce more effective ways of working that co-ordinate professional input avoiding delays and duplication of activities.

Autistic Spectrum Disorders (ASD)

Autistic Spectrum Disorders (ASD) refers to a spectrum of childhood developmental disorders resulting from impairments in social, communicative and imaginative behaviours. Diagnosis involves observing social and communicative behaviour, imaginative play and adherence to routines. There is no single, definitive treatment for children with ASD although language, cognitive and behaviour management interventions can minimize the symptoms of ASD and improve learning and social integration. Although ASD is a lifelong condition, early interventions can improve language, communication, social behaviour, educational attainment and employment opportunities among people with ASD (Howlin, 1998) (2).

Fragmentation of Support
Children with ASD often have complex needs and ASD is commonly associated with medical conditions, learning difficulties and emotional and behavioural problems. Communication impairments make it difficult to identify and isolate the issues facing children with ASD, or which agency should provide support.

Services to children with ASD in South Wales were fragmented and poorly co-ordinated leading to delays in specialist assessments/support, separate waiting lists, multiple assessments, conflicting advice and confusion among parents about the support available. Multiple assessments are distressing for children with ASD who are anxious with crowds and unfamiliar surroundings and have difficulties communicating. The CAF and LP could reduce fragmentation and co-ordinate a child’s pathway between agencies, reducing stress linked to multiple assessments and speeding up service delivery.

CAF may improve services to children on the milder end of the autistic spectrum, whose needs often become apparent when they reach secondary school and become aware of their differences, leaving them vulnerable to emotional problems.

Appropriate support
Some children with ASD receive inappropriate support because of the challenges associated with the different manifestations of ASD, and needs that vary widely. Several different approaches may be tried before effective support is identified. The introduction of CAF and a LP provides more detail about a child’s strengths and difficulties, giving useful baseline information from which to monitor and review a child’s progress.  Inappropriate support was sometimes due to lack of information about the children’s difficulties. CAF aims to provide quality detailed assessments, following good practice standards, which are available to all practitioners in contact with the child allowing individually tailored programmes of support.

Providing effective support to children with ASD requires a good understanding of the disorder and the needs arising from it. CAF could help to embed a shared language and improve communication between practitioners about the needs arising from ASD.

Lack of understanding of ASD led some practitioners to conclude that a child’s behaviour was due to poor parenting, creating mutual suspicion between parents and agencies. CAF involves consulting parents, and providing opportunities to explore parenting issues, and offer advice on different approaches.

Children with ASD often have very specific needs, which differ to those of other children with additional need and inappropriate interventions can increase anxiety and aggravate challenging behaviour. Detailed CAF assessments should document a child’s difficulties using practitioner and parental accounts of a child’s impairments, helping to share effective practice and reduce the likelihood of practitioners using inappropriate interventions.

Lack of services for children with ASD
Interviewees were frustrated about the lack of ASD specific services. Support for children with ASD was closely linked to obtaining a medical diagnosis of the disorder. Children frequently experienced delays in obtaining a diagnosis due to staff shortages or uncertainty about the diagnosis. These delays in diagnosis and support place additional stress on the whole family (Barnard, Harvey, Potter and Prior, 2001) (3).

The CAF should provide children with earlier assessments of their needs that may facilitate the diagnosis, by providing detailed information to inform assessments in later specialist services. CAF may enable some children to access support prior to a conclusive diagnosis of ASD, and importantly release support for children with ASD type impairments, who do not meet all the criteria necessary for a diagnosis. Detailed CAF assessments that provide details of a child’s impairments from different sources may provide the evidence needed for practitioners to lobby for support from specialist services.

Information about Children with ASD
There is a lack of accurate information about the number of children with a diagnosis of ASD. Some agencies were unsure about the number of children with ASD in receipt of a service or which received support from other services. Information is held in individual case files in different services rather than in any central database, with the number of children affected or dimensions of their needs. This prevents effective planning, commissioning and delivery of services for children with ASD or analysis of how factors such as diagnostic practice, local support and advocacy activities impact on needs or whether there is equity across local areas. The introduction of the CAF should provide a more accurate record of information about children’s needs and where additional support is required, and could be a valuable source of information for planning local services for children with ASD if consideration is given in the developmental stages to the potential of this tool, and the information it may facilitate.

Implications for Practice
The CAF and LP offer opportunities to improve the support provided to children with ASD. This will require staff in universal services being vigilant to a child’s emotional and social development which may require some targeted training to develop the skills needed to assess children’s emotional and social needs (put in something about evidence). The success of initiatives such as the CAF and LP is contingent upon practitioners using CAF in having a good understanding of ASD and how the disorder affects children. The CAF should also try to encourage practitioners who come into contact with the child to reflect on their services and practice to consider how effectively they are communicating with children with ASD and whether their practice is appropriate and likely to facilitate cooperation among children with ASD or whether it should be adapted to provide support appropriate, tailored support to this group. It is hoped that initiatives such as CAF and LP may encourage debate and discussion about the role played by universal services in supporting children with additional needs such as children with ASD. Local champions may help to encourage and inspire practitioners to reflect on their practice in addition to providing local resources, knowledge, information and good practice to encourage practitioners in various different settings to support children with ASD to make child centred services a reality.

It is easy to appear cynical about a new set of initiatives describing procedures that promise to bring improvements, but it is a rare public inquiry that does not reveal some criticism about inter-agency co-operation. Every child does matter, and if this initiative can help an individual child, as seems likely, it is worthy of more detailed exploration.

References
1. Every Child Matters (2004) Department for Education and Skills. London.

2. Howlin, P. (1998). Practitioner review: Psychological and educational treatments for autism. Journal of Child Psychology and Psychiatry, 39, 3, 307-322.

3. Barnard, J., Harvey, V., Potter, D., & Prior A. (2001).  Ignored or ineligible: The reality for adults with Autistic Spectrum Disorders, The National Autistic Society Report for National Autism Week. London: NAS.

Further reading
The National Autistic Society

All Wales Autism Resources

Loynes, F. (2001). The impact of autism. A report prepared by the National Autistic Society  for the All Party Parliamentary Group on Autism.

Medical Research Council. (2001). Review of autism research: epidemiology and causes.

Needs Assessment of Children with Autistic Spectrum Disorders in Gwent. Social Information Systems, January 2007. Copies of the report can be obtained from ts.sis@btconnect.com

Notes on the Lead Author
Tanya Samuels works for Social Information Systems, an independent research and consultancy working in health and social care. She has worked on a wide range of research issues including sexual health, youth research and gender issues. Tanya has worked for academic institutions and a non-governmental research organisation in South Africa.