Memorandum submitted by the National Autistic Society

 

1. Overview

1.1. Many parents of children with autism who home educate do so following the failure of services to meet their child's needs and provide appropriate support, or due to bullying. There is a significant lack of educational provision and support for children with autism. The often costly decision is taken to protect the child's well-being. Many parents subsequently receive very little support from their local authority.

1.2. We do not know how many children who are home educated have special educational needs (SEN) including autism, but it is likely to be higher than in the wider population.

1.3. The National Autistic Society was contacted by a number of parents who had strong concerns about the review. We also expressed concerns about the scope of the review. We subsequently met with the team and were invited to join the expert advisory group.

1.4. We recognise the considerable pressures and limitations on the Review, and felt that discussions were useful. However we would have liked to see a stronger and more detailed focus on the particular needs of children with SEN and clearer recommendations in the Review on meeting the needs of these children.

1.5. There need to be clear and specific duties on local authorities to provide support for families of children with autism and other SEN who home educate, many of whom are in this position as a result of the failure of services to effectively support their child.

 

2. Recommendations

2.1. The Ofsted SEN Review must pay specific attention to and make clear recommendations on how local authorities should provide support for children with SEN who are home educated, in line with recommendation 17 of the Badman Review.

2.2. Local authorities must meet their statutory responsibilities towards children with SEN.

2.3. Local authorities should provide appropriate support for children with autism who do not have a statement of SEN and who are home educated, including effective transition planning as they approach adulthood.

2.4. Families of children with autism who home educate should have access to a key worker who has a good understanding of autism and home education.

2.5. Any registration and monitoring system must take account of the particular needs and experiences of children with SEN including autism.

2.6. Those involved in supporting and monitoring home educators of children with autism must have a thorough understanding of autism and home education.

2.7. Support offered should include access to specialist autism support, resources such as speech and language therapy, provision of communication aids such as PECS (Picture Exchange Communication Systems) or access to training, in addition to generic support offered to all home educators.

2.8. Families should be facilitated to access other support services as appropriate.

2.9. Local authorities should seek to build positive and constructive partnerships with parents who home educate children with autism.

2.10. Where relationships between parents and the local authorities have broken down, independent mediation should be available to try and rebuild relationships. However, if a home educator is reluctant to engage with the local authority this must never be viewed as a potential indicator of abuse without additional evidence.

 

About us

3. The National Autistic Society (NAS) is the UK's leading charity for people affected by autism. We were founded in 1962 by a group of parents who were passionate about ensuring a better future for their children. Today we have over 18,000 members, 90 branches and provide a range of services, including:

An Autism Helpline which receives 45,000 calls a year, and specialist helplines including an Education Advice Line and a Tribunal Support Service

Parent support programmes

Five specialist schools and education support services for children with autism

Information and training for education and other professionals working with people with autism and their families

 

4. A local charity with a national presence, we campaign and lobby for lasting positive change for those affected by autism in England, Wales, Scotland and Northern Ireland.

 

5. The National Autistic Society (NAS) welcomes the opportunity to submit evidence to the Committee Inquiry into the review of elective home education.

 

What is an autism spectrum disorder?

6. Autism is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. Around 1 in 100 people have autism. It is a spectrum condition, which means that, while all people with autism share three main areas of difficulty, their condition will affect them in different ways. Asperger syndrome is a form of autism.

 

7. The three main areas of difficulty are:

Difficulty with social interaction. This includes recognising and understanding other people's feelings and managing their own. Not understanding how to interact with other people can make it hard to form friendships.

Difficulty with social communication. This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.

Difficulty with social imagination. This includes the ability to understand and predict other people's intentions and behaviour and to imagine situations outside of their own routine. This can be accompanied by a narrow repetitive range of activities.

 

8. Some people with autism are able to live relatively independent lives but others may need a lifetime of specialist support. People with autism may also experience some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours.

 

NAS involvement in the Home Education Review

9. The NAS submitted written evidence to the Review, and we also encouraged parents to submit evidence to the Review by publicising it on our website. A number of parents contacted us with considerable concern about the Review.

 

10. From the terms of reference and the consultation questions, the focus of the Review appeared to be particularly on those cases where there is the possibility of abuse. We felt that in order to achieve the best outcomes and to support the well-being of all children with autism who are home educated the Review needed to take a broader perspective.

 

11. The very great majority of parents who home educate their children with autism do so because they believe it to be the best, or indeed the only, option for their child. Indeed, many do so to protect their child's wellbeing, having been failed by their school and/or local authority, and then may find themselves in the position of being unable to access any support at all to home educate. Some parents also find that the characteristics of their child's autism are incorrectly labelled by professionals as naughty behaviour, and the result of poor parenting.

 

12. It is understandable therefore that some parents were upset at the focus of the Review and very concerned that it appeared to focus on monitoring of their education provision by the authorities who had in their experience failed them and their children and in some cases caused them to be marginalised from any support.

 

13. We expressed concern at the narrow focus of the Review on monitoring the safety of home educated children, with no consideration of the broader needs of families of children with autism who often home educate to ensure the mental and physical well-being of their children. We also pointed out that there was a very short period for consultation and that the process was extremely restricted, with no opportunity to make additional comments on the online form, and no contact details available to allow respondents to submit such comments or respond offline. Nevertheless, we submitted a full response to the review.

 

14. As a result, Graham Badman asked us to meet with him, and subsequently invited us to join the expert advisory group. We joined this group from its second meeting onwards, the only organisation focused specifically on autism and indeed special educational needs (SEN) issues more broadly to be invited onto the group.

 

15. We are aware that the Review was under considerable pressures and had to consider a wide range of issues and opinions. We felt that the meetings of this group were useful, and there appeared to be a stronger emphasis on striking an appropriate balance of safeguarding issues with meeting the needs of home educators and providing the right support. However we had hoped to see a stronger and more detailed focus on the particular needs of children with SEN within the Review, and were disappointed that recommendations on how local authorities should meet the needs of these children were not clearer and more explicit, in particular ensuring that local authorities meet their statutory duties, professionals working with these children have a strong understanding of their particular needs, that the monitoring system takes account of the needs and experiences of these families and that families can access specialist support as required.

 

16. The NAS believes that there needs to be very clear and strong duties to ensure appropriate support for children with autism who are home educated and for their families, many of whom are in this position as a result of the failure of services to effectively support their child. We hope the Committee will take this opportunity to further consider such support.

 

Home educated population and SEN

17. Very little is known about the population of home-educated children. However, a study quoted in the Equality Impact Assessment for the Consultation on the Home Education guidelines in 2007 estimated that children who were known to be home educated were nearly twice as likely to have statements compared with the wider population (5% compared with 3%)[1]. Children with autism were highlighted as one of the groups of children with SEN identified in the study. It is probable that a high proportion of home-educated children have SEN without the support of a statement, particularly in light of Government policy to reduce reliance on the use of statements. The NAS believes that because of the difficulties many children with autism face at school (even with statements), a significant proportion of children who are home educated are likely to be on the autism spectrum.

 

18. We are not aware of any research showing that outcomes for children with autism who are home-educated are either better or worse than for those educated in school settings, but reports from parents suggest that for some children with autism home education may be more suitable and could help them better achieve the Every Child Matters outcomes than in school settings.

 

Reasons for home educating

19. There are a range of reasons why families of children with autism choose to home educate.

 

19.1. Lack of understanding in school

19.1.1. Many parents of children with autism find that their school lacks the knowledge and training to adequately address the needs of their child. For example, an NUT survey conducted in 2006 found that 44% of teachers surveyed did not feel confident teaching children with autism.

19.1.2. We consistently hear from parents who tell us that their child's school strongly disputes the diagnosis, even where a child has a formal diagnosis, blaming bad behaviour or poor parenting instead.

19.2. Inability to access appropriate support

19.2.1. Many parents struggle to get the right support for their child within school or from their local authority. In one survey 45% of parents report waiting more than a year for support after raising a concern. Around a quarter of cases which go to the SEN and Disability Tribunal concern children with autism, more than any other SEN, and many parents win all or part of their case. Many local authorities are reducing reliance on statements to provide support and this may mean that families feel that it is more difficult to access the right support for children with autism.

19.3. Social interaction and well-being

19.3.1. The school environment can be a very challenging place for children with autism, as a result of the difficulties they face with social communication and forming relationships, or the sensory difficulties many children have. Many children with autism also experience bullying.

19.4. A disrupted education

19.4.1. Children with autism are more likely to move schools than other children. Bullying can also seriously disrupt children's education, as can high rates of exclusion. 27% of children with autism have been excluded from school. In our research one in ten of those who had been excluded had missed more than a whole school year within the past two years. Parents are frequently told this is because the school cannot cope with the child's needs.

20. All of these factors can lead to poorer educational outcomes for children with autism, and have a serious impact on children's mental health, self-esteem, social skills and behaviour. For these reasons some parents and carers decide to home educate their children with autism in the interests of their child's education and even their emotional and physical well-being.

21. For some this is a positive and proactive decision, but for many parents of children with autism it is not an easy choice but it is often a necessary one. It can be a very costly decision, as parents may give up paid employment and have much reduced social contact as a result, yet some feel they have no alternative.

22. Recommendations for support from local authorities

22.1 In this context it seems very clear that much more needs to be done to make support available for families of children with autism who home educate to help them meet their children's needs. The NAS welcomed the review's stated intention to evaluate the contributions of local authorities in providing the right type, level and balance of support to facilitate the efforts of families who home educate. We had hoped that the Review would have been able to make more explicit recommendations on meeting the needs of children with SEN. In order to make sure there is thorough consideration and decisive action to ensure appropriate support for home educated children with SEN, the Ofsted SEN Review must pay particular attention to home education for these children.

 

22.2 This must include looking at whether local authorities are meeting their statutory responsibilities to children with SEN who are home educated. Where a child has a statement the local authority is required to provide the support specified in the statement. Local authorities must continue to make the provision specified in a statement when a child is home educated, such as speech and language therapy or home-based education programmes, maintain the statement, review it on an annual basis and plan for transition to adulthood. Local authorities must meet their legal duties towards all children with SEN and disabilities. Children who are home educated should have the same access to statutory assessment as any other child.

 

22. 3 It would also be helpful to examine whether a reduction in the availability of statements has led to an increase in the number of children with SEN who are home educated. Children who do not have the support of a statement should receive appropriate support from the local authority, for example with planning for transition to adulthood.

 

22. 4 All families of children with autism who home educate should have access to a key worker who understands autism and home education. These professionals may be commissioned from existing services such as autism outreach teams or from local autism voluntary organisations where there is sufficient understanding of autism and home education. This is mentioned in the Review at paragraph 7.4.

 

22. 5 The NAS will be responding in detail to the Government's consultation on proposals to register and monitor home educators. The registration system must take account of the needs and experiences of children with autism, along with children with other SEN. For example it should be recognised that a child with autism may be withdrawn from school as a last resort in very difficult circumstances (such as a mental health crisis), and the child may be very vulnerable and not able to follow a full home education timetable immediately. If parents are to be required to produce a plan for home education, they may need time and support from relevant professionals to prepare it.

 

22. 6 It is imperative that those professionals supporting and monitoring home education for children with autism have a good understanding of the condition and how home education may be differentiated for these children.

 

22.7 Local authorities should seek to work in partnership with parents. Positive and constructive contact with the local authority will be valued by many families of children with autism who home educate and will help them achieve the best outcomes. Many of the parents who contact us experience no contact or only negative contact with their local authority. In our Make School Make Sense survey, more than half of the 31 respondents who had home educated received no support at all from the local authority.

 

"I was forced into a home education situation isolated from authorities who were keeping a safe distance. I have now been educating [my son] for 5 years in total isolation from official society (but not society in general)." Single parent of child with autism

 

22.8 Families of children with SEN should have access to generic support for home education such as exam support. They will also require access to specialist support. This might include speech and language therapy, occupational therapy, social skills support, autism advisory teachers, opportunities for training and provision of communication aids such as PECS (Picture Exchange Communication Systems).

 

22.9 The pressures on families caring for a disabled child, and particularly a child with autism, should not be underestimated. Home educators should be facilitated to access other support and services where appropriate, such as social care and carers assessments, short breaks or child mental health services. As young people approach adulthood, there need to be clear mechanisms for effective transition planning.

 

22.10 Relationships between local authorities and parents sometimes deteriorate, particularly where the family has to fight to get support. Some families we work with have to go to tribunal three or four times to try to get the right support for their child, and this inevitably has a detrimental impact on the relationship with the school and/or local authority. In some cases, local authorities perceive parents as "difficult" when, in reality, they are trying to get support for their children's needs which the local authority may be unable or unwilling to identify. If a home educator is reluctant to engage with the local authority this must never be viewed as a potential indicator of abuse without additional evidence. However, independent mediation should be available in these circumstances to try and rebuild relationships.

 

September 2009

 



[1] Referenced as "The Prevalence of Home Education in England: A Feasibility Study (York Consulting for the DfES 2006)"