There are no easy solutions to the needs of children and adults with high functioning autism and Asperger's syndrome as the ideal concept should be to provide successful service provisions in meeting the needs of children and young adults with high functioning autism and Asperger's syndrome. The case study analysis and survey questionnaire adheres for the finding out if parents and the people involved are satisfied or not of the services being provided as it can reflect a success or a failure of service. The study draws upon a range of quantitative and qualitative data, in particular a UK-wide survey of parents who uses certain ASD services, consultations with parents from six branches of the National Autistic Society and six young adults with ASD, and a UK-wide survey of service providers. The study clearly demonstrates the value and benefits of the services juxtaposed with the inability of service provision to meet demand.
INTRODUCTION TO THE PROBLEM
Why are services failing to meet the needs of people with Asperger's Syndrome and High functioning Autistic spectrum disorder? Well, it is paramount that people continue to validate existing services by conducting sound research and demonstrating techniques and strategies that are effective. It is important to promote continued trials of new and innovative approaches and to share information with others who work with people who are suffering from Asperger's syndrome and autism disorders.
BACKGROUND OF THE PROBLEM
This research makes a welcome and much needed contribution to people's knowledge and understanding of services provision and value of the services for children and teenagers with high functioning autism and Asperger's syndrome. Whilst there have been many studies exploring services for children with a range of disabilities, there have been very few specifically focusing upon ASD, especially those with high functioning autism and Aspergers. Indeed, the research is aptly timed, drawing upon the recognition of the valuing people of the need for and value of services for children and young adults affected by the disorders including those without a recognized learning disability. Assessing current levels of provision and service gaps, the report thus provides an important information resource for policy makers and practitioners. The research accessible format, in terms of both the language and clear layout, ensures that the study will also be of interest and value to a wide audience, including the families of children and teenagers with ASD.
STATEMENT OF THE PROBLEM
The research proposal implies the use of service provision in meeting the needs of those people with Asperger's syndrome and ASD. Parents frequently emphasized the importance of having a range of flexible services in order to meet the needs of individual children and their families. Within this, priorities for services included routines and consistency, the importance of planning placements and ongoing communication with families, high staffing levels and appropriate environments as this was very much the ideal; in reality the majority of families using services had little choice. Indeed, service providers were very aware that they are currently providing only what they can afford rather than what is actually needed. The most frequently requested types of services were sitting services, play schemes, family based short breaks and befriending schemes. The study clearly demonstrates not only a general need for more services but that provision is inequitable and largely focused upon those with the most obvious, practical needs. The proposal should recommend not only more and better-funded services but also a greater understanding of ASD, with knowledgeable and well-trained staff to meet the whole spectrum of needs.
PURPOSE OF THE STUDY
The purpose of the study is to basically determine, enhance and strengthen certain support services like special education services designed for people with Asperger's syndrome and high functioning autism that would provide success to service provisions that relates to the focus situation and imply better assumptions for possible collaboration and partnerships among parents, teachers, school administrators, care providers and the society in general to always update and provide plans of action for a better service that is a true success in helping out those children and young adults who are suffering from the high functioning autism and Asperger's syndrome.
The research proposal centers upon some crucial research questions as each of which is comprehensively discussed in the process and includes:
Are the services provision experienced as beneficial? Are there certain policies for provision for children with AS and ASD? What are the key principles?
What are those services used and required by children and young people with ASD?
What are the factors inhibiting the provision of the services and its possible recommendations?
Does the LEA/TEACCH give guidance to schools and other professionals on enabling pupil participation, including pupils with an ASD?
Are families given support during and immediately following identification of an ASD?
Is information given to families about where to go for further sources of information about education for children with ASDs, covering the range of educational provision that is available locally and nationally, including early intervention and educational approaches and the differences between them?
Is practical advice and training available to parents in ways of working and interacting with their children?
What elements of provision are considered important for children with the different kinds of incidence needs?
What are the major gaps in services, support and provision at every level? What are the key areas for development that will help address these gaps?
SIGNIFICANCE OF THE STUDY
This study will be significant to those who use, manage, develop and provide care in the Independent sector, National Health Service and Social Services and to those who develop policies why?, it is because they are the ones responsible for planning, assimilation and implementation of whatever services they can create and produce for the benefit of finding out solutions with the intention to support those people with Asperger's syndrome and high autistic spectrum disorders. The study will provide indication that such service being provided is beneficial to the transformation of the individual having affected by ASD and Asperger's giving him reasons to survive and enjoy life despite the situation. The ample awareness of the people involved within the process is the most crucial factor for this study, the awareness to be careful in realizing and applying such services, knowing what are appropriate approaches for the situation and learn from its pros and cons. The study will be of interest to policy makers, professionals and academics, as it highlights the perennial problem of definitions, service provision and eligibility. However, the research would have benefited from a more in-depth discussion, exploring the wider implications of society's perceptions of and attitudes towards 'disability' and what it actually constitutes for children and teenagers with ASD and their families.
RATIONALE AND FRAMEWORK OF THE STUDY
The study is useful and appropriate for those people in authorities that will serve as a guiding channel for the services to be enough and desirable for those people with Asperger's syndrome and autism spectrum disorders, as the study will provide accurate information of gathered data and research evidences as incorporated in the process of comprehensive research within the use of good methodology materials to address and solve problems along with research findings and justifications that is crucial to the study in terms of acquiring its validity and reliability instances. Autistic spectrum disorders affect many families and research indicates the number is growing. A person who has autism, which is a developmental disability, tends to experience difficulties with social interaction and communication. They are affected to varying degrees but often their symptoms are misunderstood or unrecognized by professionals. It is a crucial note that the services used and its respected provisions will provide a valuable opportunity for the person to equip himself with the knowledge and expertise to identify the symptoms and patterns of behavior associated with high functioning autism and Asperger's and avoid the common assumptions that can prevent identification of key symptoms and identify and implement the support and correct intervention program to improve outcomes for those affected by the disorders. Professionals working with children and adults must fully understand how they communicate so they can help them advance socially and educationally, and form relationships. Research into intervention models and techniques for handling the disorder has increased significantly.
Individuals with high functioning autism and asperger's can be characterized by almost normal language ability and intelligence as well as social, pragmatic impairments. Since Kanner first published his groundbreaking study on autism in 1943, countless researchers have focused their research interest on this disorder. According to the Diagnostic and Statistical Manual of Mental Disorder (DSM-IV, 1994), individuals with autism are characterized by impairments in normal social interaction, communication and by repetitive behavior and/or interest. This pervasive developmental disability usually occurs before the age of three and may last for a lifetime. Although research in the past few decades has led to great progress in this field, its causes are still unknown. Since the 1970s, a lot of researchers have been working hard to advance people's understanding of individuals with this disorder as well as to develop behavioral and educational interventions to improve their social communication abilities and daily functioning skills. However, most existing studies are focused on children with moderate to severe autism, comparatively; individuals with high functioning autism (HFA) are underserved. To better serve this disadvantaged group, more exploration and greater public awareness need to occur. According to Kanner (1943), individuals with autism can be defined as high functioning if they have almost normal language ability and intelligence. As mentioned previously, HFA received comparatively little attention of researchers until recently in the
Studies revealed individuals with HFA usually perform better at non-verbal tasks, so they have higher scores on performance IQ (PIQ) than verbal IQ (VIQ) on standardized tests; in contrast, people with AS are characterized by a high VIQ and a relatively low PIQ (Klin, Volkmar, Sparrow, Cicchetti, & Rourke, 1995; Rubin & Lennon, 2004; Tsatsanis, 2004). Tsatsanis (2004) summarized the relative strengths and challenges of individuals with AS as follows (the similar profiles of individuals with HFA can be found in the previous section): Piggot et al. (2004) recently conducted a study that focused on the emotional attribution in high functioning individuals with ASD. The study aimed to determine whether expertise in the attribution from basic facial expressions in high functioning individuals is supported by the amygdala, fusiform and prefrontal regions of interest (ROI) and is comparable to that of typically developing individuals (p. 473). Fourteen individuals (male) with HFA and 10 typically developing adolescents participated in the study. Researchers first acquired functional magnetic resonance imaging scans from all participants when they were doing emotion match (EM) (perceptual), emotion label (EL) and control tasks. Then researchers measured such parameters as accuracy, response time, and average activation for each ROI. Results showed there was no significant difference in accuracy, response time, or ROI activation between groups concerning EL tasks. Further research in this area is in urgent need. Advancing understanding in this area is essential for the development of effective individualized educational interventions to better serve those who not only suffer from their own disabilities but also from other people's misunderstanding, as well as to enhance quality of life of people with this disorder.
The local authority will be responsible for the commissioning and delivery of services for both children and adults with high functioning autism and Asperger's. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) There is a must to provide services that deliver an appropriate level of support to all children and adults with autism and Asperger's, regardless of their age, diagnosis, cultural and ethnic background or ability to pay. For instance, the APPGA believes that it will be important to evaluate these reforms using autism as a key signifier of whether they are working in practice. The National Autism Plan for Children (NAP-C) recommends that each local area should set up an ASD coordinating group, whose responsibilities include strategic planning, audit and evaluation of autism services. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
At present, service provision for people with autism and their families is extremely variable and depends on the priorities of individual local authorities. An APPGA survey to assess the route from point of assessment to receiving services for adults with autism found that adults in need of services do not know where to go for help. At the bridge to adulthood, children's legislation and resources, such as the legal requirement for full time education, fall away, and there is little to replace it. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) For mature adults, when their ageing carers are no longer able to care, their route to support is often one of emergency access rather than a planned course. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Adults with autism often fall between Social Services Learning Disability Teams and Mental Health Teams. Some local authorities are seeking to combat this by creating Vulnerable Adults teams. Service delivery for adults with autism continues to be hampered by local misunderstandings of government policy on eligibility criteria and people with autism are still being excluded from services despite the Valuing People guidance. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) The Department of Health has published guidance on eligibility criteria for social care services, Fair Access to Care Services. This instructs local authorities to base eligibility criteria services on individuals presenting needs, rather than their diagnosis. The practice guidance states explicitly Some councils that they do not help particular groups of individuals, such as those with higher functioning autism/Asperger syndrome and make no attempt to assess needs as they should do. This is unacceptable. However, worryingly the guidance cites a real life example that presents Asperger syndrome as a low risk to independence. In fact, many people with Asperger syndrome will need significant and ongoing support to achieve genuine independence, yet other groups thought to be at a greater risk of independence are likely to be prioritized for services as the inclusion of this real life example will only reinforce misunderstandings of what the barriers to independence are for many people with autism. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) There will be a clear target that all children with autism will be diagnosed by the age of five, with no more than six months between the time a parent first contacts a health professional to express concern and a confirmed diagnosis. Support and training services will be available for all carers, siblings and families immediately following diagnosis. The National Autism Plan for Children (NAP-C) provides a blueprint for multi-agency diagnosis, assessment and early intervention designed to be implemented in each local area. Family support post-diagnosis is vital. A welcome initiative in the area of family support is the Early Support Pilot Program (ESPP), (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) which is funded by the Department for Education and Skills (DfES) and aims to improve the delivery of services to disabled children under three and their families. The program seeks to put the needs of the child and their family at the centre of the strategic planning processes for services. It is made up of four resources including an Early Support Family Pack, which contains a bank of information about disabilities, options and services together with a family held record and family service plan. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
The services denotes failure by this fact, as in a recent survey by the NAS, 70 percent of carers of children with autism said they were prevented from returning to work due to a lack of appropriate care facilities. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Furthermore, only 15 percent had actually received any support from social services in their caring role. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) The APPGA welcomes the Carers (Equal Opportunities) Bill which was successfully passed recently. The Bill aims to give anyone providing regular and substantial care to a sick or disabled person, new rights to information and greater choices and opportunities for work, education and life-long learning. Asperger syndrome is often confused with conditions such as schizophrenia, and personality disorder by mental health practitioners who are inexperienced in autism, resulting in completely inappropriate drug treatments with the ensuing side-effects, and in some cases negative reactions. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Underlying this problem is the fact that in practice, adult psychiatrists do not routinely consider a patients developmental history, which is often the only indicator of their underlying diagnosis of autism. By failing to ask the right questions, the condition is not identified. However, the evidence base for the relative efficacy of autism-specific interventions is weak. Few intervention methodologies have been subject to rigorous objective assessment against scientifically-credible criteria. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
This leaves parents vulnerable to fad interventions, and creates tensions between parents and Local Education Authorities over whether specific interventions, which may cost up to £40,000 per annum, (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) should be funded. This partly explains the increasing number of autism cases being heard by the SEN and Disability Tribunal. In 2002-3, 19.8 percent of appeals lodged with SEN and Disability Tribunal concerned children with autism, although it is estimated that children with autism make up 4.6 percent of the total population of children with SEN in
Autism is often referred to as a hidden disability as it is not as easily recognized as more obvious physical disabilities. This can lead to misunderstandings with regard to the level and nature of support that pupils might need with regard to the National Curriculum. Under current law, schools have a duty to take reasonable steps to ensure that they do not put disabled pupils at a substantial disadvantage. However, examination boards are still not covered by the Disability Discrimination Act (DDA) 1995 which can lead to difficulties for schools and pupils at exam time. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
Research by the NAS found that 21 percent of children with autism have been excluded from school at some time, the most common reason given being that the school was unable to cope with the child. Children with autism therefore contribute heavily to the 2001 Social Exclusion Unit statistic that children with special educational needs are seven times more likely to be excluded from school than other children. As autism is a communication disorder, speech and language therapy is essential for this group of children. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Many people with autism experience chronic bowel disorders but many families struggle to get referrals from their GPs to have these problems investigated. These gastrointestinal problems must be treated by a professional who has had autism specific training. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) There is a clear need for multi-disciplinary assessment as early as possible, including treatment for any physical health problems. There may not be a confirmed link between autism and certain physical health problems but it is important that people with autism have appropriate treatment for any medical problems they experience, regardless of the causes. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) People of all ages, who have autism, have the same right of access to health services as everyone else. In some cases they have the opposite of the desired effect and in other cases the individuals with autism require smaller doses than those without autism. Particularly for teenagers with autism, drugs which worked well for them as children may no longer work well at adolescence. Many people with autism experience sleep disorders. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Sleeping through the night can be a difficult and seemingly impossible process. It is crucial that professionals working with people with autism and their families appreciate the strain that a lack of sleep can put on the whole family.
The families of children with autism and parents or other carers living with adults with autism will be entitled to a minimum of four weeks respite provision each year, to be delivered at a time or times and in a setting and manner that suits their needs. The intention will be to ensure that respite provision benefits all members of the family. Short break services are a key part of family support and represent a major area of unmet need for families affected by autism. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Respite can take the form of youth clubs, play and befriending schemes as well as family based and residential short breaks. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Breaks have positive impact on the physical and mental health of parents, marital relationships and the needs of siblings. They are a cost-effective form of support that can help prevent families reaching crisis point. Research conducted by Beth Tarleton for the Norah Fry Research Centre has highlighted the benefits of planned short break services for both parents and individuals with autism. However, currently it seems that respite services are often only available when a family reaches crisis point, and in any case many respite providers lack the understanding of autism necessary to meet the needs of this group of children. Currently, over 90 percent (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) of short break schemes have waiting lists, and a recent study found that children with autism account for almost a third of the waiting lists for short break services. For carers of children with autism availability is the key barrier to accessing appropriate childcare facilities, as opposed to affordability. Short break services should be recognized as central to supporting all families, and both specialist and mainstream provision needs to be resourced and developed appropriately. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Voluntary sector provision is often restricted by short term funding contracts and local authority provision is subject to resource tensions between health and social services departments. Therefore, an identified funding stream needs to be established for this vital form of support.
A member of each community mental health team with expertise in autism will be assigned the responsibility for meeting the mental health needs of children and adults with autism. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) People with autism will become automatically eligible for preventative mental health services after diagnosis, tailored to their needs and developed using an autism-sensitive person-centered planning process. Training in autism for mental health professionals will include awareness of the non-psychotic nature of autism and of the contribution of sensory problems to difficulties in processing. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Associated mental illness is more prevalent in people with autism than in the general population, yet individuals in this group often have their mental health needs overlooked. Indeed, autism itself is still too often incorrectly diagnosed as schizophrenia or another mental illness. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) Some people with autism receive inappropriate levels of medications due to the lack of awareness of the condition by professionals. The APPGA believes that training in autism for health professionals would help to prevent people with autism from being misdiagnosed with conditions such as schizophrenia. Misdiagnosis can lead to isolation and acquired mental health problems. For people with autism, the key to mental well-being lies in prompt and accurate diagnosis and ongoing support. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) All children and adults with autism will have access to leisure facilities and meaningful activity tailored to their needs and interests. This should be shaped in a way that promotes social inclusion and, where appropriate, should involve family members and friends. Research has shown that both children and adults with autism experience difficulties accessing appropriate play and leisure facilities. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) A short-term program of investment in specialist facilities will be necessary, both to meet the needs of individuals with profound impairments and to inform the development of accessible mainstream provision. The advisory group believes that people with autism should be given a real choice. The reality today is that many people with autism go into residential educational and care establishments because of a service gap that fails to address their combined ongoing educational/social needs outside of normal day school or working hours. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
There was a repeated complaint from families, professionals and providers were over the lack of strategic planning. Services seem to be a random assortment of local initiatives rather than part of any planned response. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) The agencies need to ensure that they are provided with their own room and features must be installed to ensure both their safety and the well being of the rest of the family. However, housing departments commonly refuse to acknowledge the need for adaptation when a child with an autism spectrum disorder is forced to share a room with a sibling. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004) The behavior patterns and sleep problems that many children with autism spectrum disorders experience also create disturbances for other children who share the bedroom. The Disability Rights Commission physical access duties need to be implemented in light of the physical access needs of people with autism. For example, in schools pupils benefit particularly from clear signing of classrooms, particularly when this is combined with easily understandable pictorial representation. For all children with ASD, the installation of daylight strip lighting helps to reduce stress and distraction. (All Party Parliamentary Group on Autism MANIFESTO PROGRESS REPORT, 2004)
Autism Independent UK (SFTAH) was formed in 1987 by parents of children with autism, to address their concern that there was little provision appropriate to the needs of their children of the situation improving unless action was taken. Professionals within the county too were aware that existing services failed to meet the needs of the autistic population, resulting in some students being placed in costly residential schools and homes (Schopler, Mesibov, Shigley and Bashford, 1984). In 1989 the three statutory agencies: Education, Social Services and Health and Autism Independent UK came together to discuss the need for appropriate provision for this client group. A working group was established, with the purpose of reviewing the county's policies and procedures for children and adults with autism spectrum disorders (Schopler, Mesibov, Shigley and Bashford, 1984).
A specific approach should be adopted, countywide, in order to facilitate the development of consistency and continuity for the autistic population. The selected approach was that developed by Division TEACCH, at the University of North Carolina (UNC)
Development of provision
Services initially concentrated on the primary age range. TEACCH classrooms were developed within both mainstream and special schools across the county. The discrete classes have a basic child: staff ratio of 5:2. There are now over 120 places in specialized TEACCH classrooms across the county, providing an appropriate educational environment to children aged between 3 and 19. The LEA has also concentrated on providing specialized training for learning support assistants, also possible for other staff working within the school (Schopler, Mesibov, Shigley and Bashford, 1984).
After initial developments were made in the classroom, and the efficacy of the TEACCH approach proven, specialist development in social care settings followed. 1993 saw the establishment of a 6-place group home for children with autism spectrum disorders. This enabled some children who had previously been placed out of the county to return, and to live in a structured environment closer to their families. (Mesibov, 1990; Van Bourgondien and Elgar, 1990) The development of specialized respite care services soon followed. This was in recognition of the specific needs of this client group, and the inappropriateness of attempting to place them within other services designed for children with mental retardation (Mesibov, 1990; Van Bourgondien and Elgar, 1990). Specialist play and activity schemes are also provided during school vacations, as well as at weekends, across the county. These schemes are often sited on school premises, these provide an environment to minimize disruption for the children. A voluntary organization funded, a team drawn from Education, Social Services and voluntary staff provides staffing.
Fragmentation of provision
Despite initial agreement that a multi-agency approach was essential to effectively address the needs of people with autism, the partners in this approach: Education, Social Services, voluntary agencies and Health all have differing agendas and priorities. All are working under different legislation. All have different duties and expectations. All are constrained both by their budgets and by competing demands from other service users. The agencies do not even agree when childhood ends. Medical legislation deems childhood to cease at 16. According to the laws governing education, one can continue to be a child at 19. Meanwhile the Children's Act 1989, which governs social care provision states that childhood ends at 19 and is somewhat confused. (Mesibov, 1990; Van Bourgondien and Elgar, 1990) Health services have been split up into Health Trusts/Authorities, who commission and purchase services, and the Healthcare Trusts, who provide them. Within Social Services, services for children, services for adults, and the training and regulatory inspection departments are all very separate entities (Powell and Jordan, 1997). The impact of this fragmentation has been frustrating delays in service planning and development especially within adolescent adult sectors.
Bias against the adoption of external approaches
It is imperative to keep this in proportion, but some people have a clear antipathy to ideas from 'outside' the
.As of late, service development and commitment in some areas has slowed-down. Failure to recognise the need for continued quality training within all departments is clearly reflected in the reduced numbers is an issue of grave concern and cannot be emphasised enough (Powell and Jordan, 1997). The slow-down of the autism provision within the county squarely rests with senior management of the various services .As key personnel anywhere move on, commitments sometimes waver. Development has sometimes been reactive, and even where appropriate provision exists, the quality of implementation can be variable. Moreover, working together in effective partnership with parents and carers can be challenging for professionals, and difficulties continue to arise within Northamptonshire as elsewhere (Beresford, 1994;Brady, 1998).
Significant development still needs to be carried out in the area of adult provision. Difficulties in achieving this can be attributed to three main causes:
Lack of adult diagnoses
Very few adults in county have a diagnosis. It has therefore difficult to convince policymakers of the need to develop services for a client group currently seen as largely non-existent. Only by systematic aggregation of all information on children with diagnoses, indicating clearly when these children would become adults, and their likely level of need, has any forward movement been achieved.
People have moved out of institutions and into the community. Industrial-model day centres have been transformed into social centres, offering a range of creative and expressive activities (Gilbert and Scragg, 1992). Thus when suggestions were made that these services were not the most effective for people with autism, this is sometimes viewed as anathema and a return to the 'bad old days'. This is dealt with by pointing to the unique needs of people with autism (Mesibov, 1990), and by showing the effectiveness of existing structured services within children's services.
Throughout the decade the local authority has faced challenges due to an increase in statutory duties, as a result of changes in legislation, which have had to be met at a time of budgetary constraint.
The achievement of an effective model of service delivery with relatively modest financial outlay. The services that have been developed have largely been financed from within existing budgets, or by redirecting money, which would have been spent elsewhere. The TEACCH seminars and workshops have provided regular, accessible training to local staff at an affordable cost. Moreover, these seminars and workshops have generated significant income for service industries within the county estimated at over £1.5m. All of this helps to create a positive attitude towards autism (Beresford, 1994;Brady, 1998).
The most recent, rigorous studies have estimated that the overall population prevalence of ASD in children is approximately 60 per 10,000 (Beresford, 1994;Brady, 1998).
There has been no formal work to identify the prevalence of ASD amongst adults however; there are more children and adults being identified as having disorders on the autistic spectrum than in the past. This is having a considerable impact on the demands made on statutory and voluntary services. The lack of historical data and the problems in gathering consistent data mean it is unlikely that it will be possible to determine accurately if this apparent increase is real. 'Ideal' services: Ideal services should aim to deliver: Joint assessment, delivery and review of care in a way that involves the relevant agencies, services and professionals. (Beresford, 1994;Brady, 1998) Provision of a range of services delivered seamlessly to meet the various and differing needs of people with ASD which are planned and developed in a truly multi-agency and seamless way. Well planned and sensitive management of the transition between childhood and adulthood within and between agencies
Aside, health care, education and social services vary depending on local resources and there are marked differences in ease of access to services due to limited facilities in some geographical areas. Although there are some examples of good, innovative, multi-agency practice some areas and some client groups, particularly adults and their families experience long delays and inconsistencies in the delivery of services and inadequate support after diagnosis. (Beresford, 1994;Brady, 1998)
This particular meta-analysis will have to employ the use of case study methodology of qualitative research. Rather than using large samples and following a rigid protocol to examine a limited number of variables, case study methods involve an in-depth, longitudinal examination of a single instance or event: a case. They provide a systematic way of looking at events, collecting data, analyzing information and reporting the results. As a result the researcher may gain a sharpened understanding of why the instance happened as it did, and what might become important to look at more extensively in future research. Case studies lend themselves to both generating and testing hypotheses (Flyvbjerg 2006). Thus, case studies should not be confused with qualitative research and points out that they can be based on any mix of quantitative and qualitative evidence (Yin 2002). Aside, those studying the case are led to a specific point in time and circumstance where they become a 'participant' in the case. (Yin 2002) The case study offers a method of learning about a complex instance through extensive description and contextual analysis. The product articulates why the instance occurred as it did and what one might usefully explore in similar situations as these can generate a great deal of data that may defy straightforward analysis. (Yin 2002)
The survey questionnaire will point out to the comments and experiences of parents with regards to the satisfaction of services being provided to their children with Asperger's syndrome with special needs. The case study will give a wider reflection as to what are the instances of the services they have received in support to their parents perspectives if the services for them denotes a sense of satisfaction that will imply a success factor for the service or is it a failure and amicably investigate why some services fail in meeting the needs of the people concerned?. The basic methodology requires that the data from satisfaction reports through a survey for parents and support groups in terms of a likert scaling technique. There needs to present two different case studies involving a particular individual with ASD and it should be discussed within two different scenario for precise purposes. Thus, for the service satisfaction survey, a total of 50 participants comprising of parents or guardian and or support groups who are in actuality provide care and support for someone with Asperger's syndrome and the like.
For the case study, the sample (N=100) comprised of 50 children and 50 young adults affected by high functioning autism and Asperger's syndrome students within the process of designated services provision provided to them separately. The mean age of the group will range from 7-14 years old. For the survey questionnaire, the sample should also then comprised of (N=100) parents/guardian of those children and young adults with AS and ASD as the participants should be involved in a survey to identify critical issues of service provision and be conducted in group settings during free hours. Thus, giving relevance to the services provision their affected parties have acquired like for example, TEACCH, NAS and SEN services.
Quantitative research uses methods adopted from the physical sciences that are designed to ensure objectivity and reliability. These techniques cover the ways research participants are selected randomly from the study population in an unbiased manner, the standardized questionnaire and the statistical methods used. (Steckler, McLeroy , Goodman, Bird, McCormick, 1992) The strengths of the quantitative paradigm are that its methods produce quantifiable, reliable data that are usually generalizable to some larger population. Quantitative measures are often most appropriate for conducting needs assessments or for evaluations comparing outcomes with baseline data. (Steckler, McLeroy , Goodman, Bird, McCormick, 1992)
This paradigm breaks down when the phenomenon under study is difficult to measure or quantify. The greatest weakness of the quantitative approach is that it decontextualizes human behavior in a way that removes the event from its real world setting and ignores the effects of variables that have not been included in the model. (Steckler, McLeroy , Goodman, Bird, McCormick, 1992) Qualitative research methodologies are designed to provide the researcher with the perspective of target audience members through immersion in a culture or situation and direct interaction with the people under study. (Steckler, McLeroy , Goodman, Bird, McCormick, 1992) Qualitative methods used in social marketing include observations, in-depth interviews and focus groups. These methods are designed to help researchers understand the meanings people assign to social phenomena and to elucidate the mental processes underlying behaviors. (Steckler, McLeroy , Goodman, Bird, McCormick, 1992)
The case study instrumentation is to gather factual information from case studies to be presented with the goal of supporting valid research as to why services fail to meet the needs of children and young adults with high functioning autism and Asperger's. The case study is crucial since, it will give a sense of reflection awareness for those people carrying out the services used and in a way will impart society awakening to possibly change certain provision systems that centers on the specific services that will be a factor in sorting out acceptable solutions to the arising problems involving people with AS and ASD. For the survey questionnaire, the instrument appropriate would be the likert scaling which includes scales from one to five based in the response choices for the service satisfaction survey designed in the form of question statements which would assist in gaining wider insights as to why services may be failing in meeting the needs of people with Asperger's syndrome as well as high functioning autism in form of question statements. The statements are rated on a scale of 1 (strongly disagree) to 5 (strongly agree). Like for example below, although the satisfaction level varies among the first three statements, the fourth statement tends to rate as "strongly disagree." In addition to rating the statements, parents are given an opportunity to provide comments about their experiences.
DEFINITION OF TERMS
ASD Services refers to any type of supporting groups that create, produce and implements certain kind of support services, activities and programs that is geared towards helping people with ASD and high functioning autism overcome the painful reality of the disorder's existence and prevalence affecting the majority. These services could be provided by TEACCH and NAS respectively.
Autism is a general term for a range of conditions known as autistic spectrum disorders (ASD), affecting over half a million people. It is a developmental disability, with symptoms often appearing within the first three years of life. These vary in severity but share common characteristics, including difficulties forming social relationships, problems with communication and limited imagination. People with autism are not physically disabled, and there are no obvious visual clues to the disability, the invisible nature of the condition makes it more difficult to create awareness and understanding of its effects.
Asperger's Syndrome is a term for biological disorders, but is diagnosed by clinical judgment of development and current behavior as there is a broader range of disorders that share the fundamental difficulties and better understanding and awareness of these conditions has led to substantial revision of the prevalence rates. Asperger syndrome (AS) is a relatively new category in autism spectrum disorders (ASD) that has come into more general use during the last 20 years, despite its shared history with autism. AS is a term used to describe the mildest and highest function end of ASD (Atwood, 1998). Similar to autism, AS is characterized by sustained impairments in the use of social skills necessary for meaningful social interactions, as well as the development of a range of restricted behaviors, activities, and asocial interests that dominate the child's life.
For the ethical considerations, it is important to address certain issues within the ethical standards of services designed for ASD and autism disorders for the services provision of children's services and for careful review of the involved services as there is the need to improve accountability and integration of children's services. Settings and services may need to be reminded of their duties to take reasonable steps to ensure that the subjects of research are not placed into substantial disadvantage for the purpose of conducting the research to ensure that involved parties in research are able to participate. Thus, there is a need to address certain ethical issues geared towards the realization of the proposed study within its consent, confidentiality and access to the organizations in order to carry out the process of research. For the process of having consent, it is important that the researcher must provide a formal letter of consent being addressed directly to the respondents and the people responsible for reaching out to those subjects needed for the research completion. The consent letter must contain original signatures and cannot contain any restrictions, conditions, or stipulations. Any restrictions or conditions must be kept separately between the parties involved. The consent letter must simply state that consent is given to a person to use his profile and other relevant information for the purpose of realizing the research purpose it serves.
Example of consent letter (the letter must be signed by the researcher and the involved party):
I, _________________, researcher of the proposed research would ask consent to ________________, respondent to give his/her own views and answers to the research questionnaire as enclosed for this particular research.
_________________, the researcher
In terms of confidentiality, it is a must for the researcher to assure all the involved people, organizations and parties involved for research that confidentiality of information, research findings and results is deemed very important and be kept confidential from all elements not involved in conducting the research and must ensure the respondents right to change, cancel any information important for research as the researcher adheres to the fact that confidentiality of information is a top priority and that any involved parties should not be forced to give any information for the sake of research validity. The researcher ought to provide a formal confidential letter if needed in the process.
For access to the organizations, it is crucial that the researcher will ask for a formal letter of approval deemed towards asking permission to allow the researcher in gathering and acquiring only the relevant information needed for research that the organization can directly or indirectly provide. The approval letter should state what the research is all about and for whom the research is done and all the important details there unto.
For the purpose of statistical ways and its analysis, the likert scale method produces means and standard deviations for the responses given. It also prints the minimum and maximum value. Likert scale questions are appropriate to print means for since the number that is coded can give us a feel for which direction the average answer is. The standard deviation is important as it give us an indication of the average distance from the mean. A low standard deviation would mean that most observations cluster around the mean. A high standard deviation would mean that there was a lot of variation in the answers. A standard deviation of 0 is obtained when responses to a question are the same. Henceforth, prior to computing a scale that is the mean of a series of questions, first assign points to each question so that the reverse wording questions will be assigned the opposite number of points than the positively worded questions. The median is known as a measure of location it tells where the data are. As stated in, we do not need to know all the exact values to calculate the median; if we made the smallest value even smaller or the largest value even larger, it would not change the value of the median. Thus the median does not use all the information in the data and so it can be shown to be less efficient than the mean or average, which does use all values of the data. To calculate the mean add up the observed values and divide by the number of them. The total of the values obtained in divided by total number to give a mean.
The process is conveniently expressed by the following symbols:
The range is an important measurement, for figures at the top and bottom of it denote the findings furthest removed from the generality. However, they do not give much indication of the spread of observations about the mean. The standard deviation is a summary measure of the differences of each observation from the mean. If the differences themselves were added up, the positive would exactly balance the negative and so their sum would be zero. Consequently the squares of the differences are added. The sum of the squares is then divided by the number of observations give the mean of the squares, and the square root is taken to bring the measurements back to the units we started with. The division by the number of observations of the number of observations itself to obtain the mean square is because degrees of freedom must be used.
SCOPE, LIMITATION AND WEAKNESSES
People with ASD often interpret information very literally as it needs to be presented in an unambiguous style without the use of idioms and metaphors. The use of communication technology could support subjects participation as it allows communication in a non-verbal environment, thereby overcoming many of the barriers to social communication that are usually experienced by people on the spectrum. People with ASD can take part in service provision and support programs and circle time and this may well aid mutual understanding and thereby improve relationships with peers important as the attitudes and behavior of pupils towards those with special needs is another potential barrier to inclusive participation. Although this study contributes much to the existing literature, it does have limitations. A primary limitation is that the social services may result into initial behavior change for those people carrying out the needs for AS and ASD as well as the caring and support groups of those people with Asperger's syndrome and autism. Although there were some data suggesting that certain services can produce significant behavior change in some students with AS, with inconsistent response to the service limits the ability to draw solid conclusions about the efficacy of certain AS and ASD intervention as it does serve as a caution that social stories may not work for all students with AS.
A related limitation involves the potential lack of consistency in the manner or situation in which services were implemented because of this, it was not possible to identify whether the manner in which the services was effective and have any impact on the effectiveness of possible intervention to such case situation and will affect certain perspectives for service satisfaction through questionnaire, information regarding the implementation of the services not to be a failure in helping those affected people to the protocol of using their respective services upon intervention period. Additionally, the amounts of social consequences for the participants in their respective environments cannot be assessed that is, the rates of social consequences coming from peers and teachers may not evaluated, it is difficult to identify whether the rehearsal of the services was more effective than the subsequent access to the natural reinforcement the subjects will be receiving for engaging in the target skill as the study was not designed to assess the contribution of social reinforcement apart from the services success and or failure.
TIME FRAME AND BUDGET
The plan in carrying out aspects of the research proposal strategic programs will be implemented:
A. Meet with supervisor and finalize proposal
B. Meet with supervisor and finalize proposal
C. Academic literature review
D. Professional literature review
E. Case Analysis/Survey Interview design
F. Other fieldwork and data collection
G. Data analysis and writing reports
H. Complete temporary draft/Prepare final draft
The above Gantt chart will show possibilities as to when the task process for the research will be completed. It is a useful tool for planning and scheduling projects. It assesses how long a project should take, determine the resources needed and lay out the order in which the task need to be carried out. In the Gantt chart presented, it shows that the researcher will have to meet every specific task with the purpose of completing the research study in line with the proposal study involved. Gantt charts are useful when the project under way. It helps in monitoring its progress and immediately sees what should have been achieve at a point in time, and can therefore take remedial actions to bring the project back on course.
Table 1: Gantt chart for Proposed Research
1 2 3 4 5 A B C D E F G YEAR TASK TO COMPLETE H
1 2 3 4 5
Other materials 15
An autistic spectrum disorder (ASD) is a complex developmental disability that affects the way a child or young person communicates and relates to people around them. Researchers use the word spectrum because in autism the underlying impairments can vary significantly between individuals. Some children with ASD may have severe impairments across several areas, may show extreme social withdrawal or repetitive, stereotyped behaviour, and may also have learning difficulties. Other children may have more subtle impairments, such as those found in Asperger syndrome. Despite the wide ranging differences, everyone with ASD has difficulty in social interaction, social communication and imagination. ASD is currently estimated to affect approximately 91 in every 10 000 children. This means that in
For these children, it will be debatable whether a process of diagnosis and intervention will be helpful. Another group of children do need to have their difficulties identified and understood by all those who work with them in school; for these children understanding of their ASD can be all that is needed to prevent problems arising. A further group of children will require specific school-based plans and interventions to help them learn and develop. A final group will need specific provision which enables them to access small group teaching using particular approaches which work for autism. Children diagnosed with ASD in the pre-school years are likely to need an active intervention. The LEA bases decisions on actual services required by pre-school children on the information provided by the Health services and by parents. For school-aged children, whether specific services are required will depend on the regular processes and stages of the SEN Code of Practice. We expect schools, working closely with parents, to decide whether whole-staff awareness of the nature of the child's difficulties will initially be sufficient, whether specific 'school-based' planning and support is required, or whether advice from outside agencies is needed, 'school plus' planning and support. Currently, the level of training in ASD which most school staff has that specialist advice from outside will be required. Some children with ASD will require provision over and above what the ordinary school can provide at school action or school action plus stages. These children will need a statutory assessment and a Statement of Special Educational Needs.
The principles and aims of the overall SEN Policy are as relevant to ASD as to the other types of Special Educational Needs: working towards the ultimate goal of inclusion, working in partnership with parents/carers, working to raise the attainment of all children. Some principles and aims from our overall SEN policy are of particular importance and relevance to ASD - notably the principle of coordinating our work with that of other agencies, and early intervention that all educational staff who come into contact with children identified with ASD should have training to help them understand the nature of the condition – either at an awareness level, a hands on level or an in depth level, that all schools with children with ASD should be able to access advice or support from teachers who have in-depth knowledge at the specialist level of training. That staff working with children with ASD should be able to network with each other for the exchange of information and mutual support that provision for children with ASD should incorporate the best of what has been shown to work for these children:
Ø Challenging and confronting the autism by teaching appropriate strategies and skills for social interaction
Ø Maintaining a relaxed environment that promotes interaction
Ø Maintaining a physical environment with visual clarity, low levels of stimulation and spaces dependent on function,
Ø Maintaining the structure and routines that are needed by pupils with autism spectrum disorders
Ø Focusing on communication skills
Ø Specific teaching programmes for personal and social education including independent living skills
Ø Specific attention to stress and anxiety reduction, for example by providing for 'time out' from social situations.
There provide a continuum of provision for children with ASD, ranging from peripatetic support teachers working in mainstream schools, through resource bases in mainstream nurseries and schools, to special classes within the special schools.
GLOSSARY OF TERMS
AS – Asperger's Syndrome
ASD – Autistic Spectrum Disorder
LS – Likert Scale
m – Mean
NAS – National Autism Society
STD. DEV. – Standard Deviation
TEACCH – Treatment and Education of Autistic and Communication-handicapped Children
EARLY BIRD: A programme of training for parents of pre-school ASD children, developed by the National Autistic Society.
RESOURCE BASE: It is envisaged that children identified as needing significant support will, from the outset, be part of a mainstream class with their peers. The role of the resource base is, therefore, to identify appropriate strategies to maximize the learning which the children can achieve alongside their peers.
March 3, 2009
Sample Research Proposal on Asperger's Syndrome and High Functioning Autism
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