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Children with autism spectrum disorder (ASD) are shaped and in turn shape the people in their environment especially those closest to them, their parents and their siblings. When the sibling relationships between children with ASD and their typically developing siblings are considered, challenges and opportunities present themselves for both siblings. This study assessed the effectiveness of a sibling intervention that aimed to meet the needs of both siblings involved. It was initially hypothesised that teaching the typically developing children responsive strategy use would enhance their interactions between the children leading to increases in the quality of the sibling relationship and in the well-being of both siblings. In addition, the typically developing children were given developmentally appropriate information on their sibling’s difficulties, information on emotions, and the opportunity to play mutually enjoyable games with their sibling with ASD to enhance their motivation to persist in attempts at interacting with their sibling with ASD. Initial findings suggested that the planned intervention was not necessarily benefitting the typically developing children. The focus of the intervention changed to include a more explicit focus on the influence of the intervention on the typically developing children. Changes were made, by de-emphasising the strategy component and emphasising the other components, to enable both siblings to benefit from the intervention. Findings indicated that the typically developing children had existing skills for interacting with their siblings with ASD. Increases in the quality of the sibling interactions and the well-being of both children seemed to be most strongly related to aspects of the intervention that increased the warmth of the children’s feelings towards each other and the typically developing children’s understanding and tolerance of their sibling with ASD. Overall, the findings from this project emphasised the importance of supporting family members of children with ASD for the benefit of both the family members and the benefit of the children with ASD.

Current diagnostic criteria for autism are guided by the 'Triad of Impairments' (Wing & Gould, 1979), of which 'social impairment' forms an individual category. Social difficulties have been observed in children with autism under the age of two years and the difficulties continue throughout adulthood. Few studies have used computer-based training packages (CBTP's) to facilitate social competency in individuals with autistic spectrum disorder (ASD). The present study was completed in two phases: Phase I -compared 14 individuals with ASD (IQ ý: 70), ten individuals with no disabilities (ND) and eight individuals with mild mental retardation (MR; IQ 50-70) on their ability to identify appropriate and inappropriate social interactions using 12 scenarios on a tailor-made DVD. Phase H- the ASD group was divided into two groups. Eight individuals were trained using six of the scenarios from Phase I and eight new scenarios. Following training, both groups with ASD re-viewed the 12 scenarios shown in Phase I. The results showed that individuals with ASD were less able_to identify appropriate and inappropriate social skills than individuals with MR (t (18) = 4.9, p<00 1) or ND (t (13) = 7.5, p<00 1). The severity of the autistic symptoms negatively impacted on performance (r (14) =- . 83, p<. 001). The training group significantly improved their performance (z = -2.52, p= . 05) on both trained (z = -2.207, p= . 027) and untrained scenarios (z = -2.032, p . 042). The untrained group scores showed no significant difference between Phase I and Phase II. The current study identified that individuals with autism have more difficulty understanding inappropriate and appropriate behaviour than their MR and ND peers. However the DVD was an effective method of training a component of social competency for this population. Within the trained group, ability improved on untrained as well as trained scenarios, this suggests a generalisation of skills rather than rote learning or practice effects. Future studies would benefit from addressing how to generalise this skill from computers to 'real-life' situations.

Increasing numbers of students with disabilities are being educated in mainstream schools in response to the international call for inclusive education. This study investigated the experiences of five students diagnosed with Autistic Spectrum Disorder (ASD) with challenging behaviours, and those who support them including parents, class and special education teachers, regarding inclusive education. At the time of the study, the five male students were all of upper primary school age, and attended state schools in Queensland, Australia. A multi-case study approach was adopted to better understand the nature of inclusion through engaging participants (students, class teacher, parents, and special education teachers) in "conversations" about their experiences of inclusion by means of semi-structured interviews. Students diagnosed ASD with challenging behaviours are testing the educational system as it attempts to meet their individual needs. This is due in part to the complexities associated with the disability of ASD and the many factors required in the delivery of effective inclusive practices. The findings of the research study reflected significant variance in the nature of inclusive schooling practices. Data collected from participants involved in a focus group interview and five case studies were used to describe the practices adopted in response to meeting the educational needs of individual students diagnosed ASD with challenging behaviours. There were five key findings that emerged from this study. Firstly, a range of practices was identified for each of the five children and these were posited along the continuum from inclusive to exclusive. Secondly, inclusive practices emerged from a number of interconnected processes including training, stakeholder collaboration, a school culture pursuing educational inclusion, and educator efficacy. Thirdly, educator efficacy appears to be the most crucial factor in the establishment of inclusive practices, without it exclusionary practices prevail. Fourthly, legislation and policy alone do not appear to result in the universal adoption of inclusive educational practices. Lastly, while all students had unique educational programming needs, this thesis found that there is a need for an appropriate model to be implemented to offer a foundation level of appropriate education interventions. Implications for educational policy and practice relevant to inclusive education were discussed.

This thesis examined the contextual factors involved in teaching six students on the autistic spectrum (AS) in a regular primary school in Aotearoa/New Zealand. The research looked at the work of five teachers, including myself as a participant researcher. Through classroom observations and in depth conversations this research aimed to uncover how the teachers tried to meet the needs of their students on the AS and what affordances and/or constraints they encountered in their journeys. A social constructionist approach framed the research approach, together with a constructivist understanding of teaching and learning and these were used in conjunction with a philosophical activity theory base to explore mediators within the complex teaching and learning contexts. The contrast between teachers viewing the AS as a disability or a difference was found to be important to the way the teachers constructed their student’s value in the class or their willingness to try and meet the student’s needs. This is in line with findings that teachers’ attitudes towards disability are a key factor in the inclusiveness of teaching (Macartney & Morton, 2011; Tait & Purdie, 2000). The role of support professionals in developing inclusive teaching was found to be complex, being both affording and/or constraining for the classroom teacher. The complexity of teaching and the myriad of mediators (Lampert, 1985) involved in teaching students on the AS was analysed to uncover a number of key mediators. One of the key mediators was found to be teacher construction of the student on the AS as competent which was linked to the construction of teacher as competent (Morton, 2011). Key affordances to viewing the student on the AS as competent were the teacher having a belief in the value and worth of the student as a person and a learner and having an understanding of what it means to be a student on the AS. Teacher willingness to be student focused was found to be an important affording mediator, where there was a perceived conflict between student need and school or national policies.

Rett syndrome is a debilitating autistic spectrum disorder affecting one in ten thousand girls. Patients develop normally for up to eighteen months before a period of regression involving stagnation in head growth, loss of speech, hand use and mobility. It is almost exclusively caused by mutation in Methyl CpG binding Protein 2 (MeCP2). MeCP2 has traditionally been thought of as a transcriptional repressor, although its exact function remains unknown and it has recently been shown that the protein can also bind to hydroxymethylation and non-CpG methylation, which occurs predominantly at CAC sites in the mature nervous system. Genotype-phenotype studies of the most common Rett-causing mutations in affected patients revealed that a missense mutation, R133C results in a milder form of Rett syndrome. The reasons for this are unclear, as the mutation lies right in the heart of the methylated DNA binding domain. Previous in vitro studies of R133C showed a severe deficit in binding to methylated cytosine. A subsequent study found that R133C binding to hydroxymethylated cytosine was specifically impaired, whereas binding to methylated cytosine was indistinguishable from wildtype. Defining the DNA binding impairment of MeCP2R133C would yield important insights into Rett disease pathophysiology and provide an explanation for the phenotypic spectrum seen in patients. To shed light on these matters, a novel mouse model of the R133C mutation was created. The R133C mouse had a phenotype that was less severe than other missense mutant mice, in terms of survival, growth, Rett-like phenotypic score and some behavioural paradigms thus recapitulating the patient data. At the molecular level in adult mouse brain, MeCP2R133C protein abundance was reduced. Immunohistochemistry showed that MeCP2R133C had an abnormal pattern of localisation in the nucleus of neurons. In vitro electrophoretic mobility shift assays suggested that MeCP2R133C binding to (hydroxy)methyl-CAC may be reduced to a greater extent than binding to mCpG. Chromatin immunoprecipitation experiments confirmed the deficit in binding to methylated sites and supported a disproportionate reduction in binding to methylation in a CAC sequence context. Analysis of adult mouse cerebellar gene expression revealed a subtle upregulation of long genes and downregulation of short genes. Based on these data, it is proposed that Rett syndrome caused by the R133C mutation results from a combination of protein instability and defective binding to methylated DNA. Methyl-CAC binding is potentially abolished. The downstream biological consequence of this is a length-dependent deregulation of gene expression in the brain.

Abstract The aims of this study were to estimate the prevalence of autism in Northern Finland and to assess retrospectively the associations of autistic disorder with identified medical conditions and additional disabilities in this defined population of children and adolescents with autistic disorder. In order to find out the factors influencing the outcome, the methods of treatment/habilitation and the interventions used were studied in detail. The last aim was to elicit reliable information for decision-makers as well as ideas for giving support and, because of the presumed better outcome, saving resources in the long run. The data were collected from hospital records and the records of the central institutions for the intellectually disabled in the Provinces of Oulu and Lapland in 1996–1997. The age-specific prevalences obtained in this study showed the prevalence to be lowest, i.e. 6.1 per 10 000, in the oldest age group of 15- to 18-year-old adolescents and highest, i.e. 20.7 per 10 000, in the age group of 5- to 7-year-old children, when the criteria of ICD-10 and DSM-IV were used. In this study, almost 50% of the autistic cases had a tested IQ above 70. Associated medical disorders or associated disorders of known or suspected genetic origin were diagnosed in 12.3%. Other associated medical disorders were epilepsy, hydrocephalus, fetal alcohol syndrome and cerebral palsy. Severe impairment of vision was evident in 3.7%. The most common therapies were physiotherapy and speech, occupational and music therapy. 43.9% of the children and adolescents with autism received specific training according to the TEACCH (Treatment and Education of Autistic and related Communication-Handicapped Children), 10.2% according to the Lovaas and 30.5% according to the Portage program. Antiepileptic medication had been prescribed to 23.9% and psychopharmacals to 14.9% of the individuals with autistic disorder (AD). About three- to fourfold prevalence of AD in Northern Finland was found when compared to 16 years ago. Early, effective and regular interventions in autism have a good impact and should be provided as early as possible to children with autism. Based on the poorer prognosis of those without any early intervention, it can be anticipated that these methods will save resources in the long run.

In the last twenty years, governments around the world have signed policies and enacted legislation concerning the right of every child to be provided with education. The United Nations Convention on the Rights of Persons with Disabilities (2006), which states that every child with SEN should receive education in a mainstream setting, whenever possible stimulated, at least partly, the enactment of such policies. To some extent, the Mexican government has responded to the UN initiative by reporting a gradual increase in the number of children with SEN being placed in mainstream schools over the last ten years. However, despite the efforts of some parents and teaching assistants, there is an increasing concern that many children with ASD are not educated in mainstream schools or they have been included but without the support of a qualified teaching assistant or teacher, which has a negative effect on the quality of education. This situation has emphasized the need to improve strategies in order to overcome the barriers to effective inclusion for these children. Thus, the main aim of this study was to explore the extent to which children identified as having Autistic Spectrum Disorder are included within in mainstream schools in Mexico with the support from DOMUS a non-profit parent led organisation. This is done by examining the facilitators and barriers that affect the success of inclusion of children with ASD in Mexico. Multiple case studies of children with autistic spectrum disorders were conducted. The data on the perceptions about inclusion was gathered from interviews with head teachers, teachers, teaching assistants, and parents of children with ASD. In addition, observations of the children with ASD both in class and in the playground were carried out along with focus groups conducted with secondary age classmates, sociometric data, and a review of DOMUS’ records. Participants offered many perspectives on the facilitators and barriers that should be overcome in order to include a child with autism in mainstream schools in Mexico. Seven key themes and related subthemes that can act as facilitators or barriers emerged from the analysis. These included family factors, children with ASD’s social and academic abilities, school ethos, role of teaching assistant and DOMUS, and the influence of stakeholders’ experience in overcoming anxieties about inclusion, teachers’ competence, and stakeholders’ attitudes towards children with ASD. The findings are discussed in relation to the literature review. It was concluded that the Mexican government’s inclusive education policies should be taken further, although the teachers involved should initially receive further training in order to help them feel more confident. An ASD friendly school ethos, positive attitudes from stakeholders, and financial resources can also support inclusion. Stakeholders need to overcome their anxieties, and they can achieve this by embracing the opportunity to experience inclusion. This study provides a starting-point in by identifying the facilitators that should be strengthened and the barriers that should be reduced in order to enhance the inclusion of children with ASD in Mexico.

This research explores experiences and perceptions of mothers of adolescents and young adults (13-22yrs) with Additional Support Needs (ASN) in relation to stress, service provision and family and individual Quality of Life (QoL). A particular focus is the effect of having a family member with ASN who also has a diagnosis of Autistic Spectrum Disorder (ASD) or where the young person with ASN may have an ASD which has not been diagnosed. Mothers of young people from 4 groups were recruited: i) those with ASN and no ASD (n=41), ii) those with ASN and a diagnosis of ASD (n=18), iii) those with ASN, no diagnosis of ASD but with a positive score on an ASD screening measure (n=17) and iv) typically developing controls (n=17). The mothers of young people with ASN (n=76) completed standardised questionnaires about family and individual QoL, stress, service provision, child behaviour and presence and severity of ASD traits. Twenty two of these mothers also took part in a semi-structured interview about coping with issues identified as most stressful by them in the stress questionnaire. The mothers of typically developing young people (n=17) completed standardised questionnaires on individual and family quality of life and on the behaviour of their similarly aged son or daughter. Data collected via these questionnaires showed that increased severity of ASD was associated with increased maternal stress, which in turn was associated with decreased family and maternal QoL. Mothers of typically developing young people had significantly higher individual and family QoL scores than each of the three other groups. The findings from the interviews supported the questionnaire results and gave further insight into mothers’ life experiences. Mothers identified many perceived barriers to their child’s progress including: lack of support and lack of co-ordinated service provision. The results suggest that mothers of young people with ASN experience lower individual and family quality of life than mothers of typically developing young people. Parenting an adolescent or young adult with ASN is perceived as stressful and that the presence of behaviour associated with ASD is additionally stressful. Possible reasons for differences in quality of life outcomes amongst the study groups are discussed. Implications for adequate services and recommendations for future research are suggested.

abstract: This thesis is a qualitative research study that focuses on siblings of children with Autistic Spectrum Disorder (ASD). Even though it is expected that having a child with ASD in the family will influence the whole family including siblings of the child with ASD, the sibling population is rarely included in research related to children with ASD, and there is only limited services available for them. This exploratory study (n=6) is aimed at better understanding the siblings' lives in their family settings in order to identify the siblings' unmet needs and determine how they have been influenced by the child with ASD. This study is also aimed at identifying the most appropriate support for the siblings to help them cope better. The study followed the Resiliency Model of Family Stress, Adjustment, and Adaptation and a narrative theory approach. An in-depth interview with the parents was conducted for the study, so the findings reflect the parents' perception of the siblings. All the themes emerged into two categories: life in the family setting and supports. The findings indicate that the families are striving for balance between the siblings and the children with ASD, but still tend to focus more on the children with ASD. Also, the families tend to have autonomous personal support systems. The parents tend to perceive that these personal support systems are good enough for the siblings; therefore, the parents do not feel that formal support for the siblings was necessary. As a result of the findings, recommendations are made for the organizations that work with individuals with ASD to provide more appropriate services for the families of children with ASD, including siblings. Also, recommendations are made for future studies to clarify more factors related to the siblings due to the limitation of this study; the siblings' lives were reflected vicariously via the parents. / Dissertation/Thesis / M.S.W. Social Work 2013