The current study investigated types of social support needs through a number of domains reported by parents of children with autism spectrum disorder (ASD) along with the relationship of these needs to reported parental stress. Female participants (N = 35) in the South Central Kentucky region responded to a number of measures regarding perceptions of their current stress levels on the Parenting Stress Index - Short Form (PSI-SF) and their perceptions on social support needs through a modified version of the Family Needs Questionnaire (FNQ). The results indicated that there was a moderately strong correlation between social support needs and parental stress. For exploratory analyses, the results indicated that several social support domains significantly correlated with parental stress. Further research was recommended to explore the seven social support need domains used in the current study with ASD families.

Inledning: Svårigheterna som förekommer vid autismspektrumtillstånd påverkar individer och familjer i stor omfattning. Denna studie fokuserar på att förstå hur föräldrar uppfattar sin situation och hur de beskriver familjens behov av stöd och hjälp. Frågeställningar: Hur upplever föräldrar att relationerna och livet i familjen påverkas när en individ i familjen har funktionsnedsättningar inom autismspektrum? Hur beskriver föräldrar familjens behov av stöd och hjälp? Metod: I arbetet har kvalitativ metod använts. I studien har åtta föräldrar intervjuats. Intervjuerna analyserades enligt tematisk analys. Resultat: Tre teman framkom i analysen: diagnos - en sorg och en lättnad, energikrävande vardag samt ett kämpande för rätt hjälp och stöd. Diskussion: Föräldrarna beskriver att diagnosen, även om det också finns en sorg, medverkat till att öka förståelsen för barnet och barnets beteende. Det framkommer att funktionsnedsättningarna tar energi och tid, att skapandet av ett vardagligt liv blir som en omfattande och tidskrävande arbetsuppgift. Föräldrarna rapporterar i intervjuerna att de får kämpa hårt för att barnet ska få rätt stöd och hjälp. / Introduction: Autism-related disabilities have large effects on both individuals and families. This study focuses on how parents experience their situation and how they describe the family’s need for support and counceling. Research questions: How do the families experience the impact of autism on their relationships and their family life? How do the families describe their need of counceling and support? Method: In this study a qualitative methodology was used. Parents of five children/ young adults were interviewed. The interviews were analysed using thematic analysis. Results: Three themes emerged from the analysis: diagnosis – both a sadness and relief, energy consuming daily life and struggling to get the right counceling and support. Discussion: Parents describe that the diagnosis, although considered a sadness, also contributed to increase the understanding of the child and its behaviour. The disabilities of the child impact the family’s daily life and the daily life becomes an energy and time consuming task for the parents. Parents report that they have to struggle to get the right counceling and support.

Three preschoolers with limited or no verbal language were taught to request preferred objects using an adapted Picture Exchange Communication System (Bondy & Frost, 1998) and elements of peer mediated instruction and intervention (Neitzel, 2008) (PECS/PMII). These two interventions have been established as evidence based practices, but have not previously been taught and implemented by one adult and a preschool child in a preschool classroom. Same-aged peers were the communicative partners for the picture exchange. A teacher served as the facilitator of the exchanges. A multiple probe (days) across participants design was utilized to determine the effectiveness of the intervention. The percentage of successful exchanges/requests made by the target child using the adapted PECS/PMII method was evaluated to determine the effectiveness of the intervention when implemented by a same-aged peer. The target children not only made requests to the criterion level, two of the three increased their appropriate verbal responses. The same-aged peers were able to effectively implement the steps for PECS phase 1.

Η παρούσα εργασία αποτελεί μια προσπάθεια διερεύνησης των γλωσσικών κι επικοινωνιακών δεξιοτήτων των ατόμων με αυτιστικές διαταραχές. Στόχος της είναι η περιγραφική προσέγγιση των διαταραχών του αυτιστικού φάσματος κι η αναζήτηση των γλωσσικών περιοχών που εμφανίζονται προβληματικές στα αυτιστικά άτομα. Στο πρώτο μέρος γίνεται μια εισαγωγή στο φάσμα του αυτισμού και μια περιγραφή του θεωρητικού κι ιστορικού πλαισίου του. Κατόπιν της εισαγωγής, γίνεται παρουσίαση της σύγχρονης κατηγοριοποίησης των αυτιστικών διαταραχών, εξετάζοντας κάθε μία ξεχωριστά ως προς τα περιγραφικά τους στοιχεία κι επιδημιολογικά τους δεδομένα. Στη συνέχεια παρουσιάζεται το κύριο μέρος της εργασίας που αποτελείται από το θέμα της γλωσσικής ικανότητας των ενηλίκων και παιδιών με αυτισμό. Συγκεκριμένα, γίνεται ανάλυση της γλωσσικής ανάπτυξης αυτών μέσα από μια σύγκριση τους με τα φυσιολογικά αναπτυσσόμενα παιδιά και τα παιδιά με σύνδρομο Άσπεργκερ, αλλά και άλλων πτυχών της γλωσσικής κι επικοινωνιακής ικανότητας όπως το επίπεδο παραγωγής, χρήσης και κατανόησης και επεξεργασίας. Σε αυτό το σημείο της εργασίας παρατίθενται κι αναλύονται δύο έρευνες από Έλληνες επιστήμονες που εξετάζουν τις γραμματικές δυσκολίες που αντιμετωπίζουν οι αυτιστικοί πληθυσμοί. Η πρώτη έρευνα αφορά στη χρήση των προσωπικών αντωνυμιών στην ελληνική γλώσσα από αυτιστικά παιδιά, συγκρίνοντας τα με άτομα με τυπική ανάπτυξη και με σύνδρομο Άσπεργκερ (Βογινδρούκας, 2005), ενώ η δεύτερη εξετάζει την κατανόηση και την ερμηνεία των αντωνυμιών (προσωπικές κι αυτοπαθείς) και της αναφοράς τους, αλλά και των ρημάτων με μη ενεργητική μορφολογία (παθητικά και αυτοπαθή) από παιδιά με αυτισμό υψηλής λειτουργικότητας καθώς και με υψηλού επιπέδου λεκτικές και μη λεκτικές ικανότητες. Τα αποτελέσματα των ερευνών συζητούνται σε σχέση με ευρήματα άλλων ερευνητών από τη διεθνή κι ελληνική βιβλιογραφία. Σε επόμενο στάδιο γίνεται περιγραφή της γλωσσικής συμπεριφοράς των αυτιστικών ατόμων στο πραγματολογικό επίπεδο βασισμένη σε σύγχρονες επιστημονικές μελέτες, αλλά κι επιπρόσθετες δυσκολίες στη φωνολογία και το φαινόμενο της ηχολαλίας, το οποίο κάνει πολύ συχνά την εμφάνισή του κατά την ανάπτυξη των παιδιών με αυτιστικές διαταραχές. Στο τέλος αυτού του μέρους, παρουσιάζονται νευρογλωσσολογικές 5 μελέτες κι έρευνες για τα συστήματα της δηλωτικής και διαδικαστικής μνήμης, τα οποία σχετίζονται με τη γλωσσική ικανότητα του ανθρώπου και παρουσιάζουν διαφορετική συμπεριφορά στους αυτιστικούς. Στο επόμενο μέρος ασχολούμαστε με εναλλακτικά συστήματα επικοινωνίας ή επικοινωνιακούς τρόπους που μπορούν να συμβάλλουν στην ανάπτυξη του προφορικού λόγου και της γλωσσικής ικανότητας των αυτιστικών ατόμων, όπως το Makaton και το Pecs. Ιδιαίτερη έμφαση δίνεται στη νοηματική γλώσσα και στη χρήση της από αυτιστικούς πληθυσμούς ως υποβοήθηση της γλωσσικής ανάπτυξης ή κι ως μοναδικό εναλλακτικό τρόπο επικοινωνίας. Στο τελευταίο μέρος της παρούσας εργασίας συζητούνται τα αποτελέσματα και τα συμπεράσματα από τις μελέτες κι έρευνες που παρατέθηκαν αλλά αναφέρονται και σημεία στα οποία θα πρέπει να σταθούν και να λάβουν υπ’ όψιν τους τυχόν μελλοντικές έρευνες πάνω στο ζήτημα της γλωσσικής ικανότητας σε άτομα που εμπίπτουν στο φάσμα του αυτισμού. / --

Very little information exists regarding the communication ofnonverbal adults with severe Intellectual Disabilities(ID) and Autism Spectrum Disorder(ASD). Most research in this area pertains to children. This study poses the following questions: “Howdononverbal, intellectually disabled adults who haveASD and those people who have contact with them on a regular day-to-day basis communicate with each other? What enhancesand or strengthens this communication? Can positive development in communication occur?”Based upon the data retrieved from eleven interviews, portraits of the communicative relationships of nonverbal adults with ID and ASDand their caregivers were compiled. The results of the study confirmed the existence of a personalized, functional system of communication between nonverbal adults with severe ID and ASD and their caregivers. The information gathered revealed improvement in communication. It was discovered, moreover, that a key factor in communicative development was the creation of common conceptual ground between caregiver and service user. Several attitudes and behaviors on the part of caregivers were noted to increase this common conceptual ground. The study’s conclusion cites the limitations, in methodology and scope, of the current investigation, and calls for more wide-ranging research on the communication of nonverbal adults with ID and ASD. / Det finnsidagintemycket information tillgängliggällandekommunikation avicke-verbala vuxna med gravtintellektuella funktionshinder ochAutismspektrumtillstånd. En stor delav forskningsom har bedrivitsidetta område gäller barn. Frågeställningarna i denna uppsats är: ”Hur kommuniceraricke-verbala vuxna med intellektuella funktionshinder och Autismspektrumtillståndi sin vardagmed de människor som finns runt omkring dem?Vad är det som gynnaroch förstärkerdenna kommunikation? Kan dennakommunikationutvecklas och förbättras?Med information från intervjuer med elva omsorgsgivare skapades femporträtt av detkommunikativa samspeletmellan icke-verbala individer med gravtintellektuella funktionshinder och Autismspektrumtillstånd, och deras kontaktmän. Studiens resultat visade att det finns ettfungerande, individualiserat kommunikationssystem mellan omsorgstagare och omsorgsgivare. En förbättring i kommunikationennoterades. Man har kunnat se att omsorgsgivarens attitydoch förhållningsättgentemot omsorgstagaren varit betydande fördenna förbättring. Resultatenvisade att utvidgning av den gemensamma konceptuella grunden[common conceptual ground] mellan omsorgstagare och omsorgsgivare var en viktig faktor i den kommunikativaförbättringen. Flera faktorer visade sig vara avgörande i expansionen av den gemensamma konceptuella grunden. Det påpekasatt det fanns uppenbara begränsningar i bredden och metodeni denna studie och det konstateras att det finns behovav mera omfattande forskning omkommunikation av icke-verbala vuxna med intellektuella funktionshinder och Autismspektrumtillstånd.

Darbe atlikta teorinė vaikų, pasižyminčių autizmo spektro sutrikimais, pažinimo ir individualaus ugdymo galimybių analizė. Iškelta hipotezė, tikėtina, kad tėvai ir pedagogai vaikams, pasižymintiems autizmo spektro sutrikimais, labiausiai vertina individualų ugdymą. Anketinės apklausos metodu atliktas tyrimas, kuriuo siekama išsiaiškinti vaikų, pasižyminčių autizmo spektro sutrikimais, individualaus ugdymo poreikį bei patikrinti bendrųjų mokyklų mokytojų ir įvairių sričių specialistų (pediatrų, neurologų, psichologų, psichiatrų) žinias apie autistiškus vaikus. Atlikta statistinė duomenų analizė. Tyrime dalyvavo 107 specialieji pedagogai – logopedai, 42 tėvai, 4 bendrojo lavinimo mokyklų pradinių klasių mokytojų, 15 mokytojų dalykininkų, 5 pediatrai, 0 neurologų, 13 psichologų, 18 kitų specialistų. Empirinėje dalyje nagrinėjami tėvų ir pedagogų dažniausiai pasirenkami ir specialistų rekomenduojami vaikų, pasižyminčių autizmo spektro sutrikimais, ugdymo metodai bei priimtiniausios ugdymo formos. Svarbiausios empirinio tyrimo išvados:  Pediatrams labai trūksta žinių tiek apie autizmą, tiek apie ugdymo metodus, taikomus vaikams, pasižymintiems autizmo spektro sutrikimais, ugdyti, o jie pirmieji turėtų pastebėti autizmo bruožus.  Dauguma pedagogų vaikams, pasižymintiems autizmo spektro sutrikimais, ugdyti rašo individualias programas, bet dirba su jais bendrai klasėje.  Tiek tėvai, tiek pedagogai pageidautų, jog vaikai, pasižymintys autizmo spektro sutrikimais, būtų ugdomi... [toliau žr. visą tekstą] / Theoretical work has been done for children with all autism spectrum disorders, cognitive and educational opportunities for individual analysis. Hypothesis, that parents and teachers of children with all autism spectrum disorders, the most appreciated by the individual education. The questionnaire survey method, which wants to find out about children with all autism spectrum disorders the individual educational needs, check the general education teachers and various professionals (pediatricians, neurologists, psychologists, psychiatrists) knowledge about autistic children. Carried out in statistical data analysis. The study included 107 special educators - speech therapists, 42 parents, 4 secondary schools, primary school teachers, 15 general education teachers, 5 pediatricians, 0 neurologists, 13 psychologists and 18 other professionals. The empirical paragraph dealt with the parents and educators are selected and recommended by specialists for children with all autistic spectrum disorders, education methods, preferred forms of education. The main empirical findings: - Pediatrician has a lack of knowledge about autism and the methods of education for children with all autism spectrum disorders, to educate, but they should be the first to find out autistic traits. - The majority of teachers write individual programs for children with all autism spectrum disorders, but generally they work at the same time with whole class children. - Parents and teachers want that the... [to full text]

Autism-spectrum disorders (ASDs) are a group of neurodevelopmental disorders that are becoming increasingly more prevalent. A diagnostic criterion for autism is the presence of restricted, repetitive behaviours (RRBs), one of which is the intense fascinations for virtually any topic: circumscribed interests (CIs). CIs have the potential to be used for motivational purposes. This study employed semi-structured interviews using Interpretative Phenomenological Analysis (IPA) with individuals with ASDs and their parents. In total, 11 families participated in this study, comprising 33 individuals (16 parents and 17 individuals with ASDs). This study found five themes: He's Very Unique; They Don't Realize that Not Everyone Lives and Thinks the Same Thing All the Time; We Couldn't even Pronounce the Names of These Dinosaurs, and Jason was Telling Us; You Can't Change Them, You Can Only Love Them; and So I Can Do My Job at the Same Time and Observe the Weather at the Same Time.

There is evidence from family studies for the importance of genetic factors in the development of autism spectrum disorders (ASDs) but the identification of major genes has not been achieved to date. There are several reports of deletions and duplications in individuals with ASDs, some of which are not unique to an individual. In most cases, the frequencies and relevance of these abnormalities are unknown, as they have been identified serendipitously in one or a few individuals. My overall hypothesis was that such rearrangements would facilitate the identification of “culprit” genes associated with ASDs by identifying a small chromosomal region for candidate gene testing. I molecularly characterized two overlapping 2p15-2p16.1 deletions detected in unrelated individuals with confirmed autistic disorder (Subject 1) or autistic features (Subject 2), a 1.4Mb deletion on chromosome Xp22 (Subject 1) and a duplication of chromosome 7q11.23, reciprocal to the Williams-Beuren Syndrome (WBS) deletion, in one individual with an ASD (Subject 3). Using real-time semi-quantitative PCR, I screened a total of 798 individuals with an ASD and 186 healthy controls for the presence of similar abnormalities. No additional cases were identified in either group. Subsequently, I selected 6 genes [Orthodenticle homolog 1 (OTX1), Variable charge, X-linked (VCX), Neuroligin 4, X-linked (NLGN4X), Syntaxin 1A (STX1A), Cytoplasmic linker 2 (CYLN2) and General transcription factor IIi (GTF2i)], based on their function and localization within or in the vicinity of the rearrangements and tested them for association with ASDs. Although there was no evidence for association for any marker or haplotype in most of the genes tested, this was not so for GTF2i. Haplotype transmission disequilibrium testing revealed an increased transmission, from healthy parents to their affected offspring, of the common alleles of one marker and one haplotype in GTF2i (P = 0.0010 and 0.0005, respectively). This gene encodes a brain-expressed transcription factor previously implicated in the mental retardation associated with WBS. Based on these findings, I propose that, although the genomic rearrangements reported herein are not a common cause of ASDs, the GTF2i gene within the WBS critical region is important in the aetiology of autism. / Thesis (Ph.D, Physiology) -- Queen's University, 2009-11-20 00:35:11.727

No description available.

The term ‘autism’ was first used in 1906 to describe a condition in adults. The term was later used again in 1943 and 1944 by Leo Kanner and Hans Asperger respectively who used the term to describe symptoms found in children. Autism was a relatively unknown condition until the 1980s and 1990s when research on the condition began to increase. The increase in research and availability of information lead to a better understanding of autism and related disorders and there has since been an increase in the number of people diagnosed with 1 in 150 children being diagnosed with autism in South Africa. Autism manifests before 36 months of age with males being four times more susceptible to Autism Spectrum Disorders than females. Research available on autism and related conditions has focused largely on scientific studies in the attempt to discover a cause for the disorder and a cure for it. In recent years there has been an increase in parents writing about their experiences with their children who have autism, however very little literature is available on non-kin care-givers and their experiences in working with children with autism. This thesis provides a view into the world of the non-kin care-giver through research carried out at two school sites in the KwaZulu-Natal region. This research through participant observation and interviews aims to fill the gap in the literature regarding non-kin care-givers of children with autism. The study looks at why non-kin care-givers choose to work with children with autism, the stress and challenges associated with working with children with autism, the highlights and personal impacts of working with children with autism and why non-kin care-givers continue to work in this field. In addition this thesis looks at the experiences of parents of children with autism and as such aims to describe a symbolic journey that parents and non-kin care-givers embark on with autism. In order to understand this symbolic journey this thesis has used the theoretical framework of van Gennep’s (1960) Rites de Passage and Goffman’s (1969) Spoilt Identity and Stigma, analysing each stage of the participants involvement in relation to the concepts of separation, transition or liminality and finally incorporation. By using these theories to analyse the research findings this thesis argues for the formation of a group identity through shared experiences and understandings of autism and in this way for the creation of an Autism Community. / Thesis (M.Soc.Sc.)-University of KwaZulu-Natal, Durban, 2012.