Autism is a lifelong condition, which affects people in different ways. Whilst some people can live reasonably independently, others may need support throughout their life.
The prevalence of autism appears to have increased recently, which could be due to a number of factors; furthermore, a substantial number of undiagnosed individuals, whose needs should also be addressed, have been reported.
Autism can have an economic effect on individuals and their families; however, the future costs of autism are governed by policy and practice, and although the NAS have been campaigning for autism specific legislation for a number of years, and legislation has been implemented in England, Wales and Northern Ireland, this is not the case in Scotland. The NAS feel that individuals with autism do not receive enough or the right type of support and autism specific legislation can go some way to ensure that services such as social, health and education are more autism friendly.
This study investigates the prevalence and cost of autism, national and local policies, and legislation; also looking at policies within the workplace to identify gaps for developing more autism friendly practices.
The National Autistic Society (NAS) describes autism as a lifelong spectrum condition, which affects how people see the world, especially how they relate to, and communicate with others; whilst all people with autism have difficulties in social communication, interaction and imagination, they will be affected in different ways. Some people may be able to live reasonably independently, whilst others may need a lifetime of support.
Asperger syndrome (AS) is a form of autism; although some people with AS can have above average intelligence and fewer problems with speech, they may still have difficulties with understanding and processing language. (NAS, website undated1)
In my role as a teacher of Support for Learning (SFL), the pupils I support display dyslexia and low ability; however one pupil (pupil N) also presents many autistic characteristics. Although this particular pupil does not have a formal diagnosis, there are other pupils within the secondary school with a diagnosis, and also, other diagnosed pupils moving up from the feeder primary schools.
The NAS suggests that autism affects around one in every hundred people, and is more common than people might think (ibid).
In recent years there appears to have been an increase in the number of people diagnosed with ASD, which may be due to improved diagnostic criteria, changes to definitions and practices, earlier identification, and improved awareness (Scott, et al 2002; Fombonne, 2003; Volkmar, et al 2004; Baird, et al 2006; Brugha, et al 2009; Fombonne, 2009; Feinstein 2010).
Previous epidemiology studies have concentrated on a categorical-diagnostic approach based on differing criteria, using a definition of autism encompassing severe impairments in communication and language, social interactions, and play and behaviour (Fombonne, 2003), but have not included those with other pervasive developmental disorders (PDD) who do not quite meet the diagnostic criteria for autism; however, Chakrabarti and Fombonne (2005) suggest the rate of PDD is higher than reported 15 years ago.
Some studies show a higher prevalence for the non autism disorders than those for autism, which indicates a significant group of children whose needs can be just as important as those of children with autism (Fombonne, 2009).
Whilst Fombonne, (2003, 2009) and Brugha, et al (2009) discuss the prevalence of those with a diagnosis, there are possibly many more exhibiting autistic characteristics without a diagnosis, whose needs should also be addressed.
Referring to studies carried out by Baron-Cohen, et al (2009) and Russell, et al (2010), the BBC (2009) and Science Daily (2010) reported substantial numbers of children with autism and related disorders could be undiagnosed.
Using the Childhood Autism Spectrum Test (CAST) (appendix 1) (Autism Research Centre, website undated), Baron-Cohen, et al (2009) assessed for unknown cases of ASD; although Williams, et al (2004) suggested the use of CAST would not be appropriate as a general population screening test due to insufficient evidence concerning the effectiveness, Baron-Cohen, et al (2009) used this method in their research; concluding that 11 children received a research diagnosis of ASD, and estimated the prevalence to be 1.57 per cent, including previously undiagnosed cases, which is greater than previous estimates; however, figures estimated by the NAS and Fombonne, (2009) did not include undiagnosed cases.
Russell, et al (2010) suggested that 55 per cent of children with autistic characteristics at the same levels as those diagnosed with autism were not identified as needing extra support from education or health services, also 57 per cent of children with features the same as those related to AS had no special provision at school. Baron-Cohen, et al (2009), and Russell, et al (2010) concluded that there may be substantial numbers of children with ASD, who cannot obtain access to vital services and provision without a formal diagnosis; yet, HMIE (2006) states that support should not only be available for those with a formal diagnosis, but for others too.
The National Audit Office (NAO) (2008) surveyed General Practitioners (GPs) to identify the number of patients displaying undiagnosed autistic tendencies. The results indicated an average of 2.5 per cent under 18 years and 1.4 per cent of adults showing symptoms implying they may have ASD, with an average of 50 per cent displaying high-functioning autism or AS. The majority of these patients were referred to the mental health services, with GPs commenting they require additional guidance and training to identify and address the needs of patients with ASD more effectively.
As well as affecting the health, wellbeing, social integration and quality of life of individuals and their families, autism can also have a financial impact.
Using available literature, Knapp et al, (2007, 2009) estimated the costs of supporting children with ASD at £2.7 billion, adults £25 billion, someone with ASD and intellectual disability £1.23 million, and someone with ASD without intellectual disability £0.80 million, per year; however, these figures were based on many assumptions due to lack of available data on distinguishable age bands, service use, residency, and informal family costs such as visiting individuals who are placed out-of-area.
Both adults and children can be at risk of out-of-area placements, which comes at a high price for the placing authorities. The main reasons for out-of-area placements, including residential schools or colleges, are due to the lack of available local services (Emerson and Robertson 2008).
The Audit Commission (2007) suggested that Over 11,000 pupils with a statement of special educational needs (SEN) in England are placed in out of authority special schools. These are mainly children with severe social, emotional and behavioural difficulties (SEBD) and ASD, whose complex needs are not met by their local school. Brown and Patterson (2008) suggest there is a similar pattern in Scotland, with large numbers of adults and children in out-of-area placements.
Both The Audit Commission (2007) and Emerson and Robertson (2008) felt that more could be done to support individuals, and made recommendations intended for national and local governments, and health services to carry out.
Knapp et al, (2007, 2009) maintain that effective early intervention could help reduce the intensity of support required in adult life, and many of the most important factors which influence the future costs of autism come under the heading of policy and practice.
National Policies to Address Needs
The first policy document to address the needs of people with an ASD in Scotland was 'The same as you?' which reviewed the services for people with learning disabilities (Scottish Government, 2008).
The Scottish Executive (2000) recommended that a national network for people with ASD should be developed. They suggested that professionals do not know enough about autism, and do not recognise it as frequently as they should. Many children are supported in special schools or specialist units within mainstream schools; however, many services for children and adults with learning disabilities are not suitable for people with AS, due to their difficulties in relating to and communicating with others rather than low intellect.
To improve support for people with ASD, local and national priorities need to:
Continue improving early diagnosis.
Give professionals in local services quick access to information, specialist knowledge, expertise and training.
Widen the range of local support and services available.
Help people get specialist services quickly when they need them (ibid, p27).
Carrying out a needs assessment of services for people with ASD in Scotland, PHIS, (2001) provided advice on how services could best meet the needs of children and adults. Training was included in their recommendations, suggesting it is imperative to a wide range of professionals including GPs and teachers, to enable them to identify and refer those with ASD to the appropriate services.
Although PHIS, (2001) suggested that training and awareness is vital, and the Scottish Executive (2006) suggested an audit of training to address training needs and gaps in each NHS area, there has not been enough training for some GPs (NAO, 2008).
With the Standards in Scotland's Schools etc Act 2000, and The Education (Additional Support for Learning) (Scotland) Act, 2004, placing a duty on education authorities to meet the needs of all pupils in a mainstream environment, where possible, more pupils with an ASD are attending mainstream schools; therefore, creating awareness and specialist training is not only imperative within the NHS services but also within education. Jordan and Jones (1997), Gregor and Campbell (2001), and HMIE (2006) maintain that staff training and continued professional development plays a vital role in schools being able to meet pupils' individual needs.
HMIE (2006) recommended that in order to meet the needs of every child, education authorities should keep a record of the number of pupils with ASD who they are responsible for.
Donaldson (2010) states that all newly qualified teachers should have a sound knowledge of barriers to learning such as dyslexia and autism, with the ability to deal with them in practice, and this should be included in initial teacher training (ITT).
Bearing this in mind, universities running ITT courses were contacted via email to establish how these issues are addressed. Four universities were contacted, two replied (appendix 2); however one of these said they would get back after asking the ITE Director, but never did (LD, 11 March 2011; HM, 13 March 2011, personal emails to the author).
The university providing details stated they have a series of lectures on inclusive practice, also key speakers from HMIE, and people experienced in working with hearing and sight impairment, dyslexia and dyscalculia.
Students are required to read widely to support their understanding, and are expected to address inclusion within their assignments.
The university was asked a further question as they had not mentioned autism, to which they replied that HMIE gave a general overview of inclusion and the key speaker workshops include a presentation from someone working with ASD.
Although some universities have taken steps in addressing autism, Donaldson (2010) suggests there is a need for further improvement, adding that core elements of continued professional development (CPD) for all teachers might include meeting the needs of all learners, including those with additional support needs such as dyslexia or autism.
Despite these recommendations, Brugha, et al (2009) implies that people with an ASD are under-supported by services, and more involvement from social, educational, welfare and health services could ease the difficulties they face.
Although the majority of children with an ASD diagnosis are supported in schools, the NAS feel that adults are ignored. While autism awareness has been on the increase, appropriate services and support have not developed at the same rate.
The NAS carried out an extensive survey in 2007 and launched the 'I Exist' campaign in 2008 (NAS, website undated2).
Many adults have experienced depression, bullying, harassment and isolation, but not experienced improved wellbeing, social inclusion, independence and responsibility. Over 50 percent of those surveyed have not had their needs assessed since the age of 18, and do not receive enough support (NAS, 2008).
Despite the Scottish Executive (2000) recommending local authorities record the number of adults with autism in their area, the NAS (2008) argues that the majority of adults are 'invisible' to local services. They made recommendations for the Scottish Government, Local authorities and Community Health Partnerships (CHPs) to act upon, and felt that there needs to be a strong clear leadership both nationally and locally in order to meet individual needs; therefore, they included appointing someone responsible for planning and delivering autism services, in their recommendations.
Following the NAS 'We Exist' campaign in England, a specialist advisor for autism has been appointed within the Department of Health, and The Autism Act 2009 has been implemented.
The Autism Act 2009 required the Secretary of State to prepare and publish the Autism Strategy; setting guidelines to meet the needs of adults with ASD by local authorities, NHS bodies and NHS foundation trusts in England.
The Autism strategy intends to:
Increase the awareness and understanding of autism.
Develop a clear, consistent pathway for the diagnosis of autism.
Improve access for adults with autism to the services and support they need to live independently within the community.
Help adults with autism into work.
Enable local partners to develop relevant services for adults with autism to meet identified needs and priorities. (Department of Health, 2010)
Although the Autism Act 2009 and the Autism Strategy have been implemented in England, with other similar strategies in Wales and Northern Ireland, the Scottish Parliament failed to pass the Autism Bill in Scotland.
The Scottish Parliament argued that existing inclusive legislation, such as the Education (Additional Support for Learning) (Scotland) Act 2009 and the Equality Act 2010 already provided for those with additional support needs, and it would be a better use of resources if they focus on implementing existing legislation and duties, especially for adults with autism. (SPICe, 2011)
Following the failure of the Autism Bill in Scotland, the NAS launched their new report 'We Exist - A Bill for Autism, A Bill for Scotland'. (NAS, website undated3)
The NAS (2010) reported that 95 per cent of survey respondents believe there should be legal duty on local councils and health boards to improve services for people with autism in Scotland. The majority of people with an ASD do not receive the support they need, very few adults are in employment, and most adults and children with ASD suffer from bullying and harassment. Some parents reported that although their child receives some support in school, it has often not been enough, or the right type of support.
NAS Scotland is asking the Scottish Government for:
A duty to identify and record the numbers of children and adults with autism.
People with autism to be able to get an appropriate assessment of their needs.
Each local area to plan for services that meet the needs of people with autism.
Appropriate training of staff to deliver high quality services.
Local areas to establish cross-agency leadership arrangements to develop joint working.
A duty to engage with and consult people who have autism. (NAS, website undated3)
The Scottish Government (2011) published their response, outlining some of the plans that have or will be done, which includes the ASD Reference Group creating sub-groups to look at:
Diagnosis, Assessment and Intervention.
Education and Training.
The Scottish Autism Services Network has been set up to direct people to appropriate sources of information and support across Scotland (Scottish Autism Service Network, website undated), and The Autism Toolbox distributed to schools in 2009 to help with meeting the educational needs of children with ASD, is being updated and refreshed, although no date was specified when this will be done.
In their response, The Scottish Government (2011) stated that various areas requiring further work to ensure that the needs of individuals and families affected by autism are appropriately met in the future, were identified, also The ASD Reference Group intend to meet monthly in order to plan, implement and take forward the recommendations.
Although SPICe (2011) stated that the Education (Additional Support for Learning) (Scotland) Act 2009 and the Equality Act 2010 provides for those with additional support needs, neither of these Acts, nor the Education (Additional Support for Learning) (Scotland) Act 2004, actually include the word autism or anything related to it; therefore, they are not specifically addressing autism, and amendments may be required.
Addressing Needs within the Local Authority
The Local Authority (LA) has recently opened a new information resource centre for individuals, and parents or carers of people with ASD; providing free information and resources, as well as directing people to other specialist services. They also hosted a national event in 2011 with the Scottish Autism Services Network; bringing together public and private sector employers, specialist organisations, academics, service users and their carers, to address issues (Local authority, 2010; 2011).
In order to develop autism friendly schools, the LA (2006) provided guidance for schools to help them support children with autism. This included a pupil passport workbook, and a staged intervention procedure to meet the needs of those with ASD; highlighting the importance of supporting school progression and transition to adulthood for children and young people. The guidance acknowledged the importance of developing a multi-agency consistency in both school and home.
The guidance also highlighted the importance of training and awareness and suggested available training for professionals working within the community, including teachers.
Although there is no legal requirement for either student teachers or practicing teachers to engage in autism training, Batten and Daly (2006) maintain that to carry out their legal duties in meeting the needs of every child, teachers should receive adequate training; suggesting that strong leadership is central to a school's inclusive ethos; also, the principal teacher (PT) of Learning Support or other senior member of staff coordinating the pupil support policy should have sufficient in-depth training in autism, as they play a key role in disseminating practical strategies to support other school staff.
Addressing needs within the school
There are many policies in place within the school, including anti-bullying, child protection, equality and fairness, positive behaviour, learning and teaching and support for pupils; however these policies do not appear to be autism specific.
The support for pupils policy states that learning support (LS) and pupil support (PS) staff have the responsibility of supporting pupils with additional needs. PS mainly support pupils with SEBD either in the classroom or one-to-one support within the pupil base. LS staff concentrate on curriculum support and focus on how best to help pupils experiencing barriers to accessing the curriculum; staff support the development of an appropriate curriculum to meet the additional needs of pupils; also, regularly reviewing pupils' progress through working with pupils, parents, teachers and, external agencies.
The Depute Rector with overall responsibility for Support for Pupils including the policy, and support staff, have engaged in additional training such as Inclusive Practice, Dyslexia, and Autism Awareness, although this has not included any certificated Autism training.
Identifying development needs
Various policy documents state that the school aims to value pupils as individuals, identify their educational needs and develop their abilities and talents to the full. Also, courses cater for the full ability range, and learning activities are differentiated to meet pupils' individual's needs; however, through observation whilst supporting a first year class in Home Economics, and collaboration with Home Economics staff, it was found that the pupil workbook for a new scheme of work (SOW) (appendix 3) developed and piloted by a probationary teacher, was difficult for the pupils to understand and follow; also, some of the lessons were delivered by long verbal instructions from the teacher, which the pupils could only remember part of when carrying out a task; rendering the curriculum inaccessible to some pupils. Therefore, this pupil workbook was not following the statements in the school policies, and was in need of development to increase access to the curriculum.
Attwood, (2006) states that people with AS can think differently; thinking in pictures rather than words; for these children, their understanding can improve with the use of flow diagrams, graphic diaries, mind maps and demonstrations; whereas, if their strength lies in verbal skills then instructions and discussion are the way forward.
Whilst children with AS may have an excellent long-term memory, their working short-term memory could be lower than their peers, with a tendency to forget things very quickly, which would explain why some pupils in the Home Economics class could not remember the verbal instructions given by the teacher, especially since these instructions were not written down.
Bearing Attwood's comments in mind, the new pupil workbook was developed using a combination of graphics and text (appendix 4). A pupil information book was also developed, which includes a written version of the teacher's verbal instructions (appendix 5), and pictorial recipes for one of the tasks, as the original recipes were text only (appendix 6). The combination of text and graphics should help enhance pupils' understanding and working memory, thus enabling improved access to the Home Economics curriculum.
As the new SOW would not be fully implemented with all first year groups until August 2011 a full evaluation could not be carried out; however, a questionnaire using hedonic scales (appendix 7) was developed in order to find out what pupils thought about the appearance and ease of understanding of the new pupil books, compared with the original book.
The pupils taking part in the questionnaire included some first year pupils, and some primary pupils, including pupil N. They were selected because some had already completed the lessons from the original book, some would be starting it in August, and also the younger pupils could assist in ensuring understanding of the terminology used.
The questionnaire was explained to the pupils and checked for understanding. They were asked to first look at the books and tick the smiley face which best suited their opinion. They were then asked to read certain tasks from the original book and the same tasks from the new book, and tick the smiley face which best suited their opinion. Pupils also discussed their feelings and thoughts; some added further comments on the back of the questionnaire.
Home Economics teachers commented they liked the books but there are a lot of pages to photocopy; pupils commented that the original book was 'boring' and 'not cool', and some of it was difficult to understand. They commented that the new books looked more interesting and easier to understand; however, three pupils picked out some words they did not fully understand. These included:
'Provided' - page 3 in the pupil workbook - changed to 'you have been given'
'Variety' - page 6 in the pupil workbook - changed to 'different'
Following pupils' comments, these words have been changed. One pupil also commented she did not understand the words 'instructions' and 'milkshake'; however these have not been changed due to 'milkshake' being the name of a drink, and 'instructions' being a commonly used word; however (what to do) was added to ensure understanding. Other changes to avoid confusion included changing the images of green chopping boards, as S1 pupils said they use brown ones.
Overall, the feedback from the pupils was very positive and most of the pupils asked if they could take the new books home, including pupil N who wanted to try out the recipes from the information book, for using bananas.
ASD is a lifelong condition, affecting one in every hundred people and is more common than people think; however, as some researchers suggest, an increase in prevalence could be influenced by improved diagnostic criteria, earlier identification, changes to definitions and practices, and improved autism awareness.
Although researchers mainly discuss diagnosed individuals, there may be others displaying autistic characteristics who have not been identified; although HMIE (2006) state that support should be available for undiagnosed individuals, Baron-Cohen, et al (2009), and Russell, et al (2010) argue that it is difficult for them to gain access to services and provision without a formal diagnosis.
Due to lack of available data, the figures estimating the economic impact of autism by Knapp et al, (2007, 2009), were based on many assumptions; however, as inflation is likely to remain high throughout 2011(Bank of England, 2011), which affects the cost of goods and services, in reality, these costs could be even higher; Knapp et al, (2007, 2009) argue that the future costs of autism are governed by policy and practice.
Although autism legislation has been implemented in England to ensure people's needs are met, the Scottish government did not pass the Autism Bill in Scotland, commenting that recourses would be better used to implement existing legislation. If the Scottish Government intends to focus on implementing existing legislation and duties rather than passing and implementing the Autism Bill in Scotland, amendments to these Acts may be required to address these issues, particularly for individuals with an ASD.
The NAS feels that individuals with autism do not receive enough support and autism specific legislation can go some way in ensuring that services are more autism friendly, and will continue their campaign to address these issues.
Although there is no autism specific legislation in Scotland, the LA have been doing what they can to address autism by hosting a national event, as well as opening a new resource centre; also producing guidelines to assist schools in supporting pupils with ASD.
Although the majority of school support staff have engaged in autism awareness training, this has not included in-depth certificated courses; therefore, with more autistic pupils attending the school, more in-depth training needs to be encouraged, not only with support staff but also with other mainstream teachers.
With regards to the newly developed pupil books, although the feedback was very positive, a full evaluation will need to be carried out after implementing it with the new S1 pupils in August 2011; with the combination of graphics and text, the pupil books may also be suitable for children of lower ability and dyslexia as well as those with ASD.
If the school policies state that all needs and abilities are catered for, and one SOW was identified for development to improve access to the curriculum, there could be others; therefore, teachers and departments may need advice and assistance in adapting their SOW to become more autism friendly in the future.