Ambitious about Autism Parliamentary Briefing 2010

The national charity for autism education Registered charity number 1063184

2010 Parliamentary Briefing

1 in 100 children and young people have autism Education is the best known intervention for autism TreeHouse is the national charity for autism education in the UK. Our vision is to transform through education the lives of children with autism and the lives of their families. Established in 1997 by a group of parents, TreeHouse runs a special school for children and young people with autism, and provides training for parents and professionals, commissions research and campaigns for change.

Tell us what you think of our proposals set out in this document by: zz visiting www.talkaboutautism.org.uk zz contacting our policy team or Chief Executive on 020 815 5444 or policy@treehouse.org.uk.

The national charity for autism education

number 1063184 The Registered Pears charity National Centre for Autism Education Woodside Avenue, London N10 3JA General enquiries 020 8815 5444 Email policy@treehouse.org.uk www.treehouse.org.uk www.talkaboutautism.org.uk

Registered charity number 1063184

TreeHouse believes that the lives of children and young people with autism are transformed through education. It enables children and young people to achieve, gain independence, participate and contribute to their communities.

However, children and young people with autism face many barriers to accessing learning.

These include a lack of understanding of their needs and how to meet them; good quality services; and opportunities to have their views taken into account.

TreeHouse supports the All Party Parliamentary Group on Autism’s Manifesto (2003-2013)1 which highlights priorities for parliamentary action to improve the lives of people with autism.

TreeHouse also supports the Every Disabled Child Matters Campaign Manifesto for Change2.

Our parliamentary briefing sets out specific changes to transform education services for children and young people with autism and their families and carers.

We call for: zz high quality autism education services zz early identification and effective assessment of autism zz participation of children and young people with autism and their families and carers zz national and local strategic planning for the education of children and young people with autism.

We believe that these changes will not only relieve the immense difficulties many families of children with autism face when they are failed by services, but will in the long-term save on costs to the economy in terms of lost income from families and people with autism and reactive crisis management in adulthood3.

1 All Party Parliamentary Group on Autism (2003) ‘APPGA Manifesto’, National Autistic Society, UK 2 Every Disabled Child Matters Campaign (2009) ‘Disabled Children’s Manifesto for Change’, National Children’s Bureau, UK 3 Knapp, M. et al (2007) ‘Economic Consequences of Autism in the UK’, Foundation for People with Learning Disabilities, UK

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High quality autism education services Children and young people with autism currently experience challenges in education provision: zz over 40% of children with autism have been bullied at school4 zz 43% of children with autism were officially excluded from school between 2007 and 20085 zz pupils with special educational needs (SEN) are over eight times more likely to be permanently excluded from school than the rest of the school population6 zz of those young people categorised as Not in Education, Employment or Training (NEET), 15% have a disability7.

These challenges arise because of a lack of understanding of autism, and the distinction between disability and disobedience.

Teachers tell us that they do not feel confident teaching children and young people with autism and that they lack the training needed to improve their skills and knowledge: zz 44% of teachers do not feel confident teaching children with autism8 zz 51% of Britain’s school teachers have never received specialist training to help them support children with autism9 zz only 10% have received such training in the past 12 months10.

4 Batten, A. et al (2006) ‘Autism and Education’, National Autistic Society, UK 5 TreeHouse (2009) ‘Disobedience or Disability? The exclusion of children with autism from education’, UK www.treehouse. org.uk/files/treehouse-corp/files/documents/psp_exclusion_report_FINAL.pdf 6 Department for Children, Schools and Families (2009) ‘Permanent and Fixed Period Exclusions from Schools and Exclusion Appeals in England, 2007/2008’ National Statistics SFR 18/2009, UK 7 Department for Children, Schools and Families (2008) ‘Youth Cohort Study and Longitudinal Study of People in England: The Activities and Experiences of 16 year olds: England 2007’, UK 8 National Union of Teachers (2006) ‘SEN survey on the provision of training to teachers in relation to pupils with special educational needs – evaluation’, UK 9 ICM Poll for TreeHouse, February 2009, UK 10 ICM Poll for TreeHouse, February 2009, UK

We call for: zz a range of educational provision to be available for children and young people with autism with specialist integrated support zz investment in on-going development, piloting, and evaluation of educational provision for children and young people with autism zz regional specialist centres in autism to provide information, advice, consultancy and support to all educational settings zz services to be developed in partnership with families and the third sector, supported by a strong social investment infrastructure zz a spectrum of meaningful and appropriately resourced further education, training and apprenticeship opportunities to be provided for young people with autism zz every young person with autism to have a transition plan that takes into account their and their family’s needs and views zz recommendations from the Lamb Inquiry on increasing parental confidence in the SEN system to be implemented as a matter of urgency zz initial teacher training to contain a core autism component zz every educational setting to have a person trained in identifying, referring and supporting children and young people with autism zz enforcement of the Special Educational Needs Code of Practice11 which makes it illegal for children with autism to be excluded on the basis of their disability zz all informal exclusions to be recorded and any child with autism at risk of permanent exclusion to have access to specialist intervention.

11 Department for Children, Schools and Families (2001) ‘Special Educational Needs Code of Practice’, DfES/581.2001, UK

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Early identification and effective assessment of autism There is currently wide variation in the rates of identification and referral for diagnostic assessment and services related to assessment for children and young people with features of autism.

This variation has been acknowledged by the National Institute for Health and Clinical Excellence (NICE)12.

TreeHouse research has shown: zz the average age of diagnosis is 6 years and 7 months zz the average age of diagnosis greatly depends on where you live13.

Assessment of needs, once a diagnosis has been made, is also highly variable. Parental confidence in the assessment of needs for children with SEN is a national concern. The Lamb Inquiry has investigated the need to separate assessment and funding of the statementing process and recommended an evaluation of different service models is carried out.

We call for: zz NICE guidelines on identification and assessment to be made a priority zz health professionals to be trained on how to identify children early who may be affected by autism and how to refer them for assessment zz children identified as at risk of having autism to have access to a speedy, multi-disciplinary assessment and specialist support zz children with an older sibling with autism to have automatic access to an assessment before the age of three zz recommendations from the Lamb Inquiry on piloting different assessment models of the statementing process to be implemented in 2010.

12 National Institute for Health and Clinical Excellence (2009) ‘Autism spectrum disorders in children and young people: final scope’, UK 13 Clements, K. and Daly, S. (2009) ‘Snapshot of children’s autism services in the UK’, TreeHouse, UK

Participation of children and young people with autism and their families and carers All children and young people with autism and their families and carers must feel safe and welcomed in their communities.

Participation in community life and wider society is a right for all people with autism.

Children and young people with autism and their families and carers are experts in autism and involving them in development will help to design better services to meet their needs. TreeHouse has run two parent participation projects, which demonstrate that good participation has transformative impacts on the lives of children and young people with autism and their families as well as on the delivery of services and community cohesion.

The investment in Aiming High for Disabled Children (AHDC)14 and National Indicator 5415 are the first steps in formally acknowledging the need to involve families and carers of disabled children in decision-making.

We call for: zz the continued investment in parent participation work and further development to include educational issues zz all local authorities and third sector organisations to take into account the needs of children and young people with autism and their families in planning their community services and participation work zz the needs of children and young people with autism and their families to be understood and recognised across community services so that effective support can be provided zz National Indicator 54 to be extended to include the views of disabled children and young people.

14 Department for Children, Schools and Families (2007) ‘Aiming High for Disabled Children: Better support for families’, UK 15 Department for Communities and Local Government (2009) ‘National Indicators for Local Authorities and Local Authority Partnerships: Updated National Indicator Definitions’, UK TreeHouse Ambitious About Autism 2010 Parliamentary Briefing

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National and local strategic planning for the education of children and young people with autism National Over the past year we have seen the first ever Autism Act (2009) and national strategy for adults with autism. We know that children and young people and their families face many of the same problems as adults: effective diagnosis, opportunities to participate, planning at a local level, as well as lack of good quality education. zz the Government to develop a national Local strategy in England for children Too many local authorities do not know and young people with autism the population of children and young zz the Communication Champion to people with autism in their areas, which fully promote the needs of children impacts on their ability to plan for and young people with autism support services to meet their needs. zz a central knowledge base on TreeHouse research has shown that: approaches resources and evidence zz 70% of local authorities could on autism interventions made not provide reliable information available to families and carers about the number of children zz the Government to fund research into with autism in their area education interventions for children zz there is no standard classification and young people with autism and of autism by local authorities give parents, carers and practioners zz 43% of local authorities easy access to the findings could not say how much they zz all commissioners to receive training spent on autism services for in effective interventions and children and young people services for children with autism zz only 23% of authorities said they zz every local authority to collect thorough had a dedicated member of information on the population of children staff responsible for overseeing and young people with autism through autism services for children their Children and Young People’s 16 and young people .

Plans, which must be monitored by the Children’s Trust Board zz a named senior manager in every local authority to be responsible for the commissioning and delivery of services for children and young people with autism zz every local authority to produce a 10-year plan for meeting the needs of children and young people with autism in their area.

We call for:

16 Clements, K. and Daly, S. (2009) ‘Snapshot of children’s autism services in the UK’, TreeHouse, UK