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The early years are a crucial time for children on the autism spectrum. Diagnosis and identification is occurring at an earlier age and there is increased recognition that early intervention is vital to improved outcomes.
The process of diagnosis may take some time. Professionals in the health services may be the first to hear the parents’ concerns where under-fives are concerned. They will begin by collecting information from the parent and other professionals about the child’s development to date. They are likely to observe the child in different situations, analyse their response to tasks and their interactions with others. Sometimes it may take some time for a diagnosis to be agreed by professionals. While a diagnosis is extremely useful in accessing services and support, early intervention should not be dependent on this.
A diagnosis may come as a shock for families and professionals need to handle the fact that they suspect autism or have diagnosed it with great sensitivity. They should also be aware that some cultures can be resistant to the diagnosis believing that the behavior or communication problems are due to cultural isolation, poor parenting, or even spirit possession. Even without such added problems parents may not be able to take in a great deal at this stage as they may feel overwhelmed. Follow up information on what the diagnosis means for the particular child and how to access services and support should be planned.
Early intervention in the form of educational or therapeutic services will be needed as soon as possible. The level and type of support available in different places varies widely. Some children may attend a daily nursery class and receive one-to-one support; others may only have occasional extra help in nursery. Some local authorities provide outreach support for families and many have special educational needs co-ordinators operating across early years settings to provide advice and support to staff and ensure that children on the autism spectrum are linked to other specialist services. Some parents decide to provide home-based programmes and may get these funded by their local authority; others go it alone and fund the support themselves. (see separate section on home-based programmes)
The type of early intervention for children on the autism spectrum which local authorities routinely provide include:
- Portage – a pre-school home visiting special educational needs (SEN) support service usually accessed via the local authority.
- Nursery classes – as well as local authority provision, these may be provided by private and voluntary organisations. The local authority may put in extra resources for an individual child or may offer specialist nursery provision including assessment places in early years settings. All children of three to five are entitled to early years education.
What makes a good early years programme?
ASD Good practice guidance (see link below) lists the following features of an effective programme for children on the autism spectrum:
- A programme with a focus on communication, regardless of the language ability of the child.
- A programme which involves social interaction, play, leisure and life skills.
- Access to the academic curriculum in ways that do not depend on social or communication skills and takes account of the particular difficulties of children on the autism spectrum in learning how to learn. These may emphasise structure, visual learning and modelling of activities and behaviours.
- An approach to managing behaviour which involves assessing the function of a behaviour and teaching an acceptable alternative to achieve the same result.
The guidance also recommends that families are acknowledged as educators and carers of children. It provides pointers for how this should be done:
- Parents kept fully informed about and involved in the child’s provision with good communication between home and school
- Early years staff including SENCOs should be aware of and build on any programmes used in the home environment
- Professionals should consult each other so that there is consistency in advice to families and support for the child
- A key worker who knows the child and family liaises with them and service providers
- Early years and school staff take part in training with parents.
The Early Support Programme
The Early Support Programme is a government programme aiming to achieve better co-ordinated, family-focused services for young disabled children and their families. It is a national programme used in local authorities, hospitals and community-based health services across England.
The Early Support Programme provides a standard framework and set of materials that can be used in many different circumstances, and a set of expectations about how services should work with families. Families are held at the heart of discussion and decision-making about their children.
The programme aims to better integrate service planning and delivery. Families with young children on the autism spectrum are often in contact with many different services provided by different agencies, so they should benefit from the better multi-agency working as this is at the heart of the programme.
The special educational needs framework and under-fives
If parents request a statutory assessment of their young child under two, the local authority must comply with this request if it is necessary to determine the special educational provision which the child’s learning difficulties call for. They can undertake the assessment in whatever way they feel appropriate. Many children in local early years settings will receive their help on the Early Years Action and Action Plus levels of support and, depending on their level of need, may receive a statement prior to entering school.
Statementing may be the only way to get local authority support and funding for home based programmes in some areas.
For this age group, local authorities must conduct a statutory assessment in line with regulations and complete the process within a legal timeframe. Following the assessment a decision is made about whether to draw up a statement. Parents have the right of appeal if they are turned down for an assessment or statement.
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Early Support Programme: the Government programme to achieve better co-ordinated, family-focused services for young disabled children and their families.
Sure Start is the Government programme to deliver the best start in life for every child. It brings together early education, childcare, health and family support.
Early Years Foundation Stage Government initiative setting the standards for learning, development and care for children from birth to five. Brings together: Curriculum Guidance for the Foundation Stage (2000), the Birth to Three Matters (2002) framework and the National Standards for Under 8s Daycare and Childminding (2003), building a coherent and flexible approach to care and learning. All providers are required to use the EYFS to ensure that whatever setting parents choose, they can be confident that their child will receive a quality experience that supports their development and learning.
National Portage Association: a charity offering support and information to parents and professionals involved in Portage.
The National Autistic Society's Early Bird Programme: a three month programme for the parents/carers of pre-school children on the autism spectrum. It is delivered by licensed trainers who work with parents/carers on how to get the best out of their child.
Early Intensive Behavioural Intervention: early intervention enabling learning and development.
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National Autism Plan for Children (NAPC) Produced by the National Initiative for Autism: Screening and Assessment (NIASA).The Plan covers the identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autistic spectrum disorders. The guidelines are for parents and all who work with children and were developed by a multi-disciplinary group of core professionals from Health, Education, Social Services, and representatives of parents and the voluntary sector.
National Service Framework for Children, Young People and Materntiy Services; Autism Exemplar The national service framework (NSF) for children, young people and maternity services has been published alongside supporting material, which includes a series of exemplar patient journeys. This one focuses on autism.
Teachernet Valuable source of information and good practice case studies
Early years Support Materials including: Service Audit Tool
Autism Good Practice Guidance This guidance developed by the Autism Working Group gives practical advice to providers for children with autistic spectrum disorders, based on existing good practice, and helps them to reflect on their own practice and examples of good practice
Changing Perceptions, Mark Brown & Olivia Trimbee, Early Years Support Programme (2007)
Improving Access and Inclusion in Early Years Services, Philippa Russell, Early Years Support Programme (2007)
Working with Parents in Partnership, Hilton Davis and Lorraine Meltzer, Early Years Support Programme (2007)
Best practice in key working: what do research and policy have to say? Care Co-ordination Network UK: Judith Cavet, Early Years Support Programme (2007)
Team Around the Child, Peter Limbrick Early Years Support Programme (2007)
Knowing yourself and the family, Jonathan Rix Early Years Support Programme (2007)
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The Early Years ASD service provides a graded approach towards supporting a child with a diagnosis of autism to access the foundation stage curriculum. The team may support early years settings and schools through a low level intervention such as oversight of Individual Education Plans (IEPs), attendance at review meetings or through a higher level intervention involving additional classroom support assistants and home based work using approaches such as EarlyBird, ABA, TEACHH, etc. The programme of support is designed individually for each child depending on need etc. The children may or may not hold a statement of special educational needs depending upon the support required.
The service also offers parents the opportunity to take part in the National Autistic Society's 'EarlyBird' programme so they can learn strategies to teach and support their children. Up to 6 couples can take part in each course and attendance is offered to either both parents or to a parent and a friend or other family member.
The Lancashire Under Fives Autism Programme LUFAP) is a county-wide service working with both schools and families to provide early intervention and support for young children with diagnosed autistic spectrum disorders. Good practice case study on Teachernet
Footsteps Early Years project in Sheffield in Sheffield. It brings together health and education to offer education and therapy for pre-nursery children who have difficulties in social and communication development. The majority of children have a diagnosis of autism. Good practice case study on Teachernet
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