Autism Spectrum Disorder (ASD) is a lifelong condition, which affects how people see the world, especially how they relate to, and communicate with others.
The National Autistic Society (NAS) describes autism as a spectrum condition. Whilst all people with autism have difficulties in social communication, social interaction and social imagination, they will be affected in different ways. Some people may be able to live reasonably independently, whilst others may have additional learning disabilities and need a lifetime of support.
Asperger syndrome (AS) is a form of autism. Although some people with AS can have average or above average intelligence and fewer problems with speech, they may still have difficulties with understanding and processing language. (NAS, website undated1)
My role as a teacher of Support for Learning (SFL), involves supporting children with additional needs within a mainstream primary and secondary school, either in the classroom, one-to-one or in small groups. The majority of pupils I support primarily exhibit signs of dyslexia and low ability; however one pupil I support in the primary school presents many autistic characteristics. Although this particular pupil does not have a formal diagnosis, there are other pupils within the secondary school (Academy) with a diagnosis, and also, other diagnosed pupils moving up to the Academy from the feeder primary schools.
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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 an 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).
Studies have been carried out on the epidemiology on Autism since the 1960's; however, these surveys 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).
Until recently, surveys carried out have not included those with other pervasive developmental disorders (PDD) who do not quite meet the diagnostic criteria for autism; Chakrabarti and Fombonne (2005) suggest the rate of PDD is higher than reported 15 years ago.
Some studies showed a higher prevalence for the non autism disorders than those for autism, with an average estimated prevalence of 37.1 per 10,000 for Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). These figures indicate a significant group of children whose needs can be just as important as those of children with autism (Fombonne, 2009).
Whilst studies reported by Fombonne, (2003), Brugha, et al (2009) and Fombonne, (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.
BBC (2009) and Science Daily (2010) reported that substantial numbers of children with autism and related disorders could be undiagnosed. These reports referred to studies carried out by Baron-Cohen, et al (2009), and Russell, et al (2010).
Baron-Cohen, et al (2009) carried out a survey in a mainstream primary school to assess for unknown cases of ASD using the Childhood Autism Spectrum Test (CAST) (see appendix) (Autism Research Centre, website undated). CAST is an ASD questionnaire designed for parents to complete; although Williams, et al (2004) suggested that due to insufficient evidence concerning the effectiveness, the use of CAST would not be appropriate as a general population screening test, Baron-Cohen, et al (2009) used this method in their research, concluding that 11 children received a research diagnosis of an ASD, and estimated the prevalence to be 1.57 per cent, including previously undiagnosed cases, which is greater than previous estimates; however the 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 with an autism diagnosis had not been identified as needing extra support from education or specialist health services, and 57 per cent of children with features at the same level as that related to AS had no special provision at school. The reports by Baron-Cohen, et al (2009), and Russell, et al (2010) conclude that there may be a substantial number of children with an ASD, who cannot obtain access to vital services and provision because they do not have a formal diagnosis.
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The National Audit Office (NAO) (2008) carried out a survey with General Practitioners (GPs) to identify the number of patients within different age groups 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 which indicate they may have ASD, of these, an average of 50 per cent displayed high-functioning autism or AS. The majority of these patients were referred to the mental health services, with GPs commenting they need additional guidance and training to identify and address the needs of patients with ASD more effectively.
National Policies to Address Needs
According to the Scottish Government (2008), 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.
The Scottish Executive (2000) suggested that professionals do not know enough about autism and AS, 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 an 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).
It was recommended that a national network for people with an ASD should be developed (ibid).
PHIS, (2001) carried out a needs assessment of services for people with an ASD in Scotland, looking at service provision; they provided advice on how the services could best meet the needs of both children and adults with ASD. Training was included in their recommendations, suggesting it is imperative to a wide range of professionals including GPs and teachers, in order to enable them to identify and refer those who may have an ASD to the appropriate services. Although it was suggested by PHIS, (2001) 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 an 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 an ASD they are responsible for, and support should also be available to those without a medical diagnosis.
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 care 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.
To try and encourage the government to address this situation, the NAS carried out an extensive survey in 2007 and launched the 'I Exist' campaign in 2008 (NAS, website undated2).
The NAS (2008) reported that the majority of adults with autism have experienced depression, bullying and harassment and isolation; and are not experiencing improved wellbeing, social inclusion, independence and responsibility. Over 50 percent of those surveyed have not had an assessment of their needs since the age of 18 and do not receive enough support to meet their needs.
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Despite the Scottish Executive (2000) recommendation for local authorities to record the number of adults with autism in their area, the NAS (2008) maintains that the majority of adults are 'invisible' to local services and the wider community. They made recommendations for the Scottish Government and 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 on autism has been appointed within the Department of Health, and The Autism Act 2009 has been implemented.
The Autism Act 2009 specified that the Secretary of State was required to prepare and publish the Autism Strategy by 1 April 2010; setting guidelines to meet the needs of adults with an 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 has been implemented in England, 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 expressed their concerns and 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 an ASD suffer from bullying and harassment. Some parents reported that although their child does receive some support in school, it has often not been enough, or the right type of support, which can result in exclusion from school.
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 resources and sources of information and support across Scotland (Scottish Autism Service Network, website undated), and The Autism Toolbox, which was distributed to schools in 2009 to help with meeting the educational needs of children with an ASD, is being updated and refreshed.
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, and The ASD Reference Group will meet monthly in order to plan, implement and take forward the recommendations.