Many people would argue that New Zealand has had a poor reputation for providing support services for the families of people with an Autistic Spectrum Disorder (ASD). The limited support services available for families in this country were highlighted during the trial and the manslaughter conviction of Janine Albury-Thomson. Albury-Thomson was found guilty of the manslaughter of her autistic daughter, Casey (MOH, 1999). The sentencing judge called for an independent inquiry to be held to examine the extent of support services that were available for families affected by the disorder with a view to identifying any gaps that may exist and ascertaining whether or not government policy could be blamed (Norris, 1998). More than twelve years have now elapsed since the Albury-Thomson trial and research was needed to ascertain the experiences of families raising a child with ASD. This research examines the experiences of families who have a child who has an ASD diagnosis. Research participants were families of people with Autism Spectrum Disorder who reside in the Canterbury/West Coast area. The research explored the support needs of families and the informal and formal supports that are available to them in this region. This research was conducted in three parts, with each part having a distinct method of data collection allowing triangulation of research findings. Part one was a survey questionnaire distributed via a range of mediums using a snowball sampling method. The second data set was made up of two case studies that were undertaken with a semi-structured interview approach. The third set of data was elicited via a semi-structured interview process from five local service providers that provide services to those with ASD and their families. A qualitative methodology was adopted to analyse research findings. This methodological approach was selected because it gave participants the opportunity to tell their stories about the diagnostic pathway they travelled and their experiences using available services. This research has social policy relevance as it was designed to examine the participant’s experiences while using services and resources available for the families of people with ASD in the Canterbury/West Coast area. Participants told of various social, emotional, and practical impacts and of the experiences they encountered while using the various services available. While the level of awareness of ASD has increased, the diagnosis process proved to be problematic for some when using the public health system. Consistent with a 2001 study commissioned on behalf of the Autistic Association of New Zealand, participants in this study who sought a diagnosis through the public health system found it to be a protracted process. Participants attributed delays to a lack of resources or staff that had a limited knowledge of ASD and saw these factors as barriers to obtaining a diagnosis within an acceptable time frame. A more timely diagnosis was reportedly received when the private health system was used. With regards to support offered by the agencies involved with ‘day to day’ contact with families it was found that overall, competent, experienced people worked for the existing agencies and they were capable of offering support where needed. However specific issues were identified by participants including a perception that case managers failed to understand their situation because they were unfamiliar with the implications of having a family member with ASD. Significantly, family members and service providers both identified a concern about a lack of suitable accommodation that can be utilised by a person with ASD. Because there is limited research into the support needs of families of a child with ASD this research provides an important insight into the needs of a fairly marginalised, and sometimes socially isolated, group. Implications for ongoing service provision and support of families are discussed in the thesis.

Abstract This research explored, within the framework of relevance theory, how normally developing 3- to 9-year-old children and two age groups (age 7–9 and age 10–12) of children with Asperger syndrome or high-functioning autism (AS/HFA) and their 7- to 9-year-old control group used context when answering questions and giving explanations for their correct answers. The children were asked questions targeting the pragmatic processes of reference assignments, enrichments, routines, implicatures and feelings. They were also asked to explain their correct answers to routine, implicature and feeling questions to elicit understanding about their awareness of how they had derived the answers from the context. In normally developing children the largest increase in correct answers occurred between the ages of 3 and 4 in all question types except feeling questions, where rapid development continued until age 5. After that development progressed more gradually until the age of 8 when the children performed near the ceiling level in all of these question types. Giving explanations for correct answers developed gradually between the ages of 3 and 9, indicating that becoming aware of the information used in inferencing has a longer developmental timeframe. Children's incorrect answers and explanations showed that, as children develop, their answering strategies become more sophisticated as they increasingly utilise context in different ways. Children with AS/HFA were able to answer all the question types. However, compared to the control group, the younger AS/HFA group did less well when answering contextually demanding questions, and the performance of the older AS/HFA group fell in between the younger AS/HFA group and the control group. Both AS/HFA groups had difficulties when giving explanations for their correct answers, showing difficulty in articulating explicitly how they had used context in arriving at the correct answer. Incorrect answers and explanations indicated that, usually, all the children tried to utilise contextual information, although the attempt failed somehow. For children with AS/HFA it was more typical to continue with their answer after first giving a correct answer or explanation, which then led to an irrelevant answer, suggesting that these children had difficulties with stopping processing at the relevant point. / Tiivistelmä Tutkimuksessa tarkasteltiin, kuinka normaalisti kehittyneet 3–9-vuotiaat lapset ja kaksi ikäryhmää lapsia (7–9-vuotiaat ja 10–12-vuotiaat), joilla on Aspergerin oireyhtymä tai hyvätasoinen autismi (AS/HFA) ja heidän 7–9-vuotiaista koostuva kontrolliryhmänsä, käyttivät kontekstia vastatessaan kysymyksiin ja perustellessaan oikeita vastauksiaan. Tutkimus tehtiin relevanssiteorian viitekehyksessä. Lapsilta kysyttiin pragmaattista prosessointia vaativia kysymyksiä, jotka arvioivat viittausten, epätäydellisten lauseiden, rutiinien, implikatuurien ja tunnetilojen ymmärtämistä. Lisäksi heidän tuli perustella oikeat vastaukset rutiini-, implikatuuri- ja tunnekysymyksiin, jotta nähtiin, olivatko lapset tietoisia, kuinka he olivat johtaneet vastauksensa kontekstista. Normaalisti kehittyneillä lapsilla oikeiden vastausten määrä lisääntyi nopeasti 3. ja 4. ikävuoden välillä kaikissa kysymystyypeissä. Tunnekysymyksiin vastaamisessa tämä nopean kehityksen kausi jatkui 5. ikävuoteen saakka. Tämän jälkeen kehitys jatkui hitaampana 8 vuoden ikään saakka, jolloin lapset suoriutuivat lähes kaikista kysymyksistä kaikissa eri kysymystyypeissä. Perustelujen antaminen oikeisiin vastauksiin kehittyi asteittain 3. ja 9. ikävuoden välillä, mikä kertoi, että vastauksessa käytetyn informaation tiedostamisen kehittyminen tapahtui pitemmällä aikavälillä. Lasten virheelliset vastaukset ja perustelut osoittivat, että iän lisääntyessä lasten vastausstrategiat muuttuivat kehittyneemmiksi ja he hyödynsivät kontekstia monin eri tavoin. Lapset, joilla oli AS/HFA, osasivat vastata kaikkiin esitettyihin kysymystyyppeihin. Kuitenkin nuorempi AS/HFA-ryhmä suoriutui kontrolliryhmää heikommin ja vanhemman AS/HFA-ryhmän suoriutuminen sijoittui nuoremman ikäryhmän ja kontrolliryhmän suoriutumisen puoliväliin. Molemmilla AS/HFA-ryhmillä esiintyi vaikeuksia oikeiden vastausten perustelussa, mikä kertoi vaikeudesta ilmaista, kuinka he olivat käyttäneet kontekstia oikeaan vastaukseen pääsemiseksi. Virheelliset vastaukset ja perustelut osoittivat, että yleensä kaikki lapset pyrkivät kontekstin hyödyntämiseen vaikka epäonnistuivatkin siinä. Lapsille, joilla oli AS/HFA, oli tyypillisempää jatkaa vastaamista vielä oikean vastauksen tai perustelun antamisen jälkeen, mikä lopulta johti aiheesta syrjähtämiseen. Tämä kertoi vaikeudesta lopettaa prosessointi relevantissa kohdassa.

The diploma thesis deals with the care of a girl with Rett syndrome (RTT) in the family. The six main chapters and individual subchapters present the issues of Rett syndrome, the family of a girl with RTT and area of care for a girl with RTT. The first chapter of the diploma thesis presents the fundamental issues related to Rett syndrome with an outline of the history, definition, causes and manifestations. The prevalence and incidence, diagnosis and manifestations of RTT are presented. The following subchapters are devoted to the individual stages of Rett syndrome, their course and the issue of RTT in boys. The second chapter focuses on the issue of the family caring for a child with a disability, presents a definition of the family and the stages of acceptance of a child with a disability. The following subchapters present the complex care for a child with a disability and present an overview of possible forms of support for families of children with disabilities. The third chapter deals with selected areas of care that parents of girls with RTT often have to provide. The individual subchapters include the following areas such as hygiene, sleep, diet, mobility, communication and health care. The fourth chapter is the research survey itself, conducted qualitatively. The research aimed to find out...

A qualitative case study research design is used to investigate the results of a neuropsychological test battery, collated and used with four individual cases. A literature study consisting of research with respect to AS as well as neuropsychological assessments provides the theoretical framework from which existing theory is tested and expanded on. The cases are analysed individually and then by cross case analysis to ascertain any patterns of strength and weaknesses which could result in a "typical" profile of a learner with AS. Findings conclude confusions with respect to diagnostic criteria for AS and a distinction of DSM-IV-TR criteria is used. The neuropsychological test battery includes questionnaires (personal history, Gilliam Asperger's disorder scale, Conners' parent and teacher questionnaire, Dunn's sensory profile) interviews (parents, teachers), observations (classroom and playground) and formal testing (intelligence, motor functions, academic achievement, theory of mind and executive functions). Findings from the literature show similarities between AS children and children with non verbal learning disabilities. Evidence of AS differing from individuals with high functioning autism is conclusive in all previous research using theory of mind tests. Evidence from the literature shows many children had been given another diagnosis, typically ADHD, before being given the diagnosis of AS. Additional disorders such as anxiety and depression were also given. AS children had consistent difficulties with social interaction. A typical neuropsychological profile of AS is not identified, but rather a "personality type" that is dominated by anxiety and individual "quirks" of personality which affects responses to the formal test battery - thereby influencing the scores obtained. Two of the cases presented with an academic profile similar to that of a non verbal learning disability and one presented with similarities with a semantic pragmatic disorder. The thesis concludes with a proposed differentiating model of behavioural, communication and learning disorders in which AS is defined in terms of that originally described by Hans Asperger himself, and specifically treated within the education environment. / Educational Studies / D.Ed. (Psychology of Education)

A qualitative case study research design is used to investigate the results of a neuropsychological test battery, collated and used with four individual cases. A literature study consisting of research with respect to AS as well as neuropsychological assessments provides the theoretical framework from which existing theory is tested and expanded on. The cases are analysed individually and then by cross case analysis to ascertain any patterns of strength and weaknesses which could result in a "typical" profile of a learner with AS. Findings conclude confusions with respect to diagnostic criteria for AS and a distinction of DSM-IV-TR criteria is used. The neuropsychological test battery includes questionnaires (personal history, Gilliam Asperger's disorder scale, Conners' parent and teacher questionnaire, Dunn's sensory profile) interviews (parents, teachers), observations (classroom and playground) and formal testing (intelligence, motor functions, academic achievement, theory of mind and executive functions). Findings from the literature show similarities between AS children and children with non verbal learning disabilities. Evidence of AS differing from individuals with high functioning autism is conclusive in all previous research using theory of mind tests. Evidence from the literature shows many children had been given another diagnosis, typically ADHD, before being given the diagnosis of AS. Additional disorders such as anxiety and depression were also given. AS children had consistent difficulties with social interaction. A typical neuropsychological profile of AS is not identified, but rather a "personality type" that is dominated by anxiety and individual "quirks" of personality which affects responses to the formal test battery - thereby influencing the scores obtained. Two of the cases presented with an academic profile similar to that of a non verbal learning disability and one presented with similarities with a semantic pragmatic disorder. The thesis concludes with a proposed differentiating model of behavioural, communication and learning disorders in which AS is defined in terms of that originally described by Hans Asperger himself, and specifically treated within the education environment. / Educational Studies / D.Ed. (Psychology of Education)