Mothers of children with autism face unique challenges that can negatively impact their well-being. Frequently, these challenges require elevated amounts of time, energy, and money to address. In an effort to investigate a low-demand approach to improving well-being, this study employed a signature strengths intervention with mothers of children with autism. Thus far, research on signature strengths with this specific population is very limited. Five mothers of children with autism participated in the study. All were married and highly educated. Four identified themselves as white, one as Hispanic. They ranged in age from 25-44. Each mother had between one and three children with autism. The participants attended an online meeting with the researcher after identifying their strengths. During the meeting, they discussed ways they already used their strengths, as well as more ways they might use them in the future. The participants then entered a four-week practice period. Each week they focused on one strength, aiming to use each strength in three new ways over the allotted seven days. The participants completed surveys to measure parental distress and life satisfaction at three points: baseline, immediately after a four-week intervention phase, and one month after the end of the intervention phase. Additionally, they answered a daily question that queried life satisfaction on a Likert-scale throughout the baseline and intervention phases. Overall, the group reported a decrease in parental distress and an increase in their level of life satisfaction and daily satisfaction. These results add to other research that has found beneficial outcomes for mothers of children with autism who are taught to use their strengths more often. The use of signature strengths interventions could help to address a critical need among this group of mothers: mental health support that does not require excessive effort or time.

This work aims at developing a novel machine learning method to investigate heterogeneity in neurodevelopmental disorders, with a focus on autism spectrum conditions (ASCs). In ASCs, heterogeneity is shown at several levels of analysis, e.g., genetic, behavioral, throughout developmental trajectories, which hinders the development of effective treatments and the identification of biological pathways involved in gene-cognition-behavior links. ASC diagnosis comes from behavioral observations, which determine the cohort composition of studies in every scientific field (e.g., psychology, neuroscience, genetics). Thus, uncovering behavioral subtypes can provide stratified ASC cohorts that are more representative of the true population. Ideally, behavioral stratification can (1) help to revise and shorten the diagnostic process highlighting the characteristics that best identify heterogeneity; (2) help to develop personalized treatments based on their effectiveness for subgroups of subjects; (3) investigate how the longitudinal course of the condition might differ (e.g., divergent/convergent developmental trajectories); (4) contribute to the identification of genetic variants that may be overlooked in case-control studies; and (5) identify possible disrupted neuronal activity in the brain (e.g., excitatory/inhibitory mechanisms). The characterization of the temporal aspects of heterogeneous manifestations based on their multi-dimensional features is thus the key to identify the etiology of such disorders and establish personalized treatments. Features include trajectories described by a multi-modal combination of electronic health records (EHRs), cognitive functioning and adaptive behavior indicators. This thesis contributes in particular to a data-driven discovery of clinical and behavioral trajectories of individuals with complex disorders and ASCs. Machine learning techniques, such as deep learning and word embedding, that proved successful for e.g., natural language processing and image classification, are gaining ground in healthcare research for precision medicine. Here, we leverage these methods to investigate the feasibility of learning data-driven pathways that have been difficult to identify in the clinical practice to help disentangle the complexity of conditions whose etiology is still unknown. In Chapter 1, we present a new computational method, based on deep learning, to stratify patients with complex disorders; we demonstrate the method on multiple myeloma, Alzheimer’s disease, and Parkinson’s disease, among others. We use clinical records from a heterogeneous patient cohort (i.e., multiple disease dataset) of 1.6M temporally-ordered EHR sequences from the Mount Sinai health system’s data warehouse to learn unsupervised patient representations. These representations are then leveraged to identify subgroups within complex condition cohorts via hierarchical clustering. We investigate the enrichment of terms that code for comorbidities, medications, laboratory tests and procedures, to clinically validate our results. A data analysis protocol is developed in Chapter 2 that produces behavioral embeddings from observational measurements to represent subjects with ASCs in a latent space able to capture multiple levels of assessment (i.e., multiple tests) and the temporal pattern of behavioral-cognitive profiles. The computational framework includes clustering algorithms and state-of-the-art word and text representation methods originally developed for natural language processing. The aim is to detect subgroups within ASC cohorts towards the identification of possible subtypes based on behavioral, cognitive, and functioning aspects. The protocol is applied to ASC behavioral data of 204 children and adolescents referred to the Laboratory of Observation Diagnosis and Education (ODFLab) at the University of Trento. In Chapter 3 we develop a case study for ASCs. From the learned representations of Chapter 1, we select 1,439 individuals with ASCs and investigate whether such representations generalize well to any disorder. Specifically, we identify three subgroups within individuals with ASCs that are further clinically validated to detect clinical profiles based on different term enrichment that can inform comorbidities, therapeutic treatments, medication side effects, and screening policies. This work has been developed in partnership with ODFLab (University of Trento) and the Predictive Models for Biomedicine and Environment unit at FBK. The study reported in Chapter 1 has been conducted at the Institute for Next Generation Healthcare, Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai (NY).

An increase in the prevalence rate of autism is not necessarily matched by a concurrent increase in the rate of highly qualified special education teachers. The low ratio of highly qualified teachers to the number of students with autism has resulted in chronic teacher shortages in this area. Alternative certification is used as a mechanism to alleviate the demand for highly qualified teachers in special education. However, alternative certification routes have often left novice teachers underprepared for teaching students with autism, more specifically in the implementation of evidence-based practices necessary for instructional effectiveness. The purposes of the study were: a) to assess the knowledge of novice alternatively certified (AC) teachers in the area of autism education; and b) to determine the extent to which age, credit hours of instruction, formal hours of instruction, amount of professional development, and number of students with autism predict the variance in knowledge scores. Participants included all novice (i.e., first-and second-year) alternatively certified special education teachers in the state of Texas. Data were collected through an electronic survey instrument disseminated state-wide to approximately 33 individuals. Multiple regression was conducted in order to determine the strongest predictors of autism knowledge scores. In addition, a multi-way ANOVA was performed to identify differences between groups. The largest predictor of knowledge of autism was hours engaged in self-directed learning. Overall, AC programs in Texas need to provide basic and core content in the area of autism to increase the knowledge of novice teachers.

An autism spectrum disorder (ASD) diagnosis in childhood comes with inherent vulnerability to adverse experiences. For some, the developmental process of adolescence overwhelms their altered neural system, exacerbating this vulnerability. Adolescence presents an opportunity to mitigate the negative effects of adverse childhood experiences (ACEs) on the developing brain. However, little is known about children who have both ASD and a history of ACEs. This study, first sought to understand the prevalence of ACEs among adolescents with ASD and whether those who have experienced ACEs are placed at further risk for other social and emotional challenges, impacting their transition into adulthood. With adolescents being highly sensitized to their environment, opportunities for intervention in their environments may mitigate the long-term consequences of ACEs. Due to adolescents spending a great deal of their time in school, developing interventions to support those with ASD that can be implemented within the school would be beneficial. Thus, the second aim of this study was to understand how schools can serve as a place for trauma-informed intervention. The Whole School, Whole Community, Whole Child (WSCC) model served as the conceptual framework for this mixed-methods study. Data from the 2020 National Survey of Children’s Health (NSCH) were examined to determine the prevalence of ACEs and further risk for social-emotional issues in adolescents with ASD. Focus groups and semi-structured interviews were conducted with school personnel in public schools to understand how they respond to typically developing and ASD students who have experienced ACEs. The findings showed that 60% of adolescents with ASD had experienced ACEs. Additionally, significant associations were found between the experience of ACEs and a diagnosis of anxiety, depression and ADHD. Furthermore, the experience of ACEs was associated with being bullied, however, no significant association was found with their ability to make friends. Great variability exists in the way schools respond to ACEs, if at all, and lack consistency and clarity in their SEL practices. Therefore, there is a need to identify the school climate components that are needed to provide trauma-informed interventions and determine how to scale these interventions. Further, with the heterogeneity of the ASD profile, identifying which factors are associated with this risk will be helpful in providing tailored interventions, specifically in the school environment.

No description available.

Maintaining dental health is vital as it contributes to the psychological well-being of an individual and the overall systemic health through preventing chronic diseases. Unfortunately, poor oral health has been identified as a common trend in individuals with Autism Spectrum Disorder (ASD). There is limited research regarding the barriers that result in rates of increased dental manifestations in patients with ASD compared to neurotypical individuals. This study strived to identify the barriers that contribute to poor oral health in individuals with ASD in order to establish interventions to break those barriers and improve overall dental health in the Autism community. A descriptive, mixed methods study design was utilized that included 10 participants: adults with ASD (n=4), parents of children with ASD (n=4) and dental professionals (n=2). The ASD population were asked to complete a questionnaire that asked about home/office dental care, dental issues and anxiety, sensitivity to external stimuli in a dental office, physical challenges and parafunctional habits. Semi-structured interviews were conducted with dental professionals regarding their experience and training in treating patients on the Autism Spectrum. Three of the four parents reported that their child had high levels of anxiety regarding dental visits. Only one adult with ASD reported flossing on a regular basis, and bruxism was reported by all adults with ASD and all but one parent as an area of concern. Interviews with the two dentists revealed that families of individuals with ASD face financial barriers and reported infrequent visits from adults with ASD. Additionally, both dentists received minimal training in working with special populations. Further research is needed to improve the frequency of dental visits in adults with ASD, which can lead to an overall increased quality of life. Additionally, more training and guidance should be provided to dental offices on working with patients with ASD.

A child’s early language environment, and their parents’ active engagement during parent-child interactions play a vital role in facilitating the development of complex social reinforcers and the growth of their verbal behavior. Using a verbal behavioral approach, this study aimed to measure the statistical significance of changes in the quality and quantity of parent-child interactions after parents participated in a virtual parent-training program. The intervention used was the Incredible Years-ASLD® (Webster-Stratton, 2015) program, which consisted of 12 group parent-training sessions delivered virtually in small groups. Th e study also aimed to assess the association between parental stress and the quality and quantity of parent-child interactions. Participants were seventeen biological mother-child dyads. The participant children attended a full-day, intensive Applied Behavior Analysis (ABA) preschool, with a mean age of 4 years and 3 months and either had an Individual Education Program for a preschooler with a disability or an Individualized Family Service Plan. The number of verbal operants exchanged between the mother and the child during the parent-child interactions were measured at baseline, during, and after the intervention. Parent-child interactions were designed to mirror their naturalistic interactions and consisted of a five-min structured-play task, and a five-min free-play task, which were recorded for future analysis. Self-reported parental-stress levels were measured at baseline and after the intervention using the Parenting-Stress Index-Fourth Edition, Short Form (Abidin, 2012). This pilot study was conducted to statistically evaluate the changes across all three conditions following the IY-ASLD® intervention on a) the quantity of mother-child interactions, as measured by the number of vocal-verbal operants initiated by the mothers (i.e., mands and tacts), and the number of approvals vs. disapprovals; and b) on the quality of mother-child interactions as measured by mothers’ verbal responsiveness to their children’s initiations, mothers’ effectiveness in eliciting a response from their children, and the number of missed opportunities for mothers and children. The results for the first research question demonstrated that there was a statistically significant increase in the number of tacts emitted by the mothers in the free-play task, as well as a statistically significant decrease in the number of approvals following the intervention. There were no statistically significant changes in the number of mothers’ mands or disapprovals. The results for the second research question demonstrated that, following the intervention, there was a statistically significant decrease in the number of missed opportunities for the children during the structured-play task, and in the number of missed opportunities for the mothers in both tasks. There was also a statistically significant decrease in children’s responses to mothers’ initiations in the free-play task. This study also aimed to assess the relation between parental stress and the quality and quantity of parent-child interactions. The findings suggested a statistically significant negative association during the pre-intervention condition between parental-stress and the quality of parent-child interactions, specifically, mothers’ responsiveness to their children’s initiations. Furthermore, mothers’ stress levels were significantly negatively associated with the number of mands emitted by the mothers, but not associated with the quantity of the other vocal-verbal operants.

In order to provide equal education to students with autism spectrum disorder (ASD) in Swedish upper secondary English as a foreign language (EFL) classrooms, support must be provided that adapts to their strengths and needs regarding reading comprehension. Multiple studies show that many upper secondary students with ASD in Sweden do not meet the knowledge requirements for passing grades in English, and require support in reading comprehension. Through a systematic research review based on ten studies regarding reading comprehension for L2 students as well as students with ASD, this paper aims to investigate what current research says regarding how L2 students with ASD process text and also explores scaffolding tools and teaching methods used for developing reading comprehension. Further the findings are discussed in regard to the Swedish educational context. The results from the reviewed studies found four factors that can affect the reading comprehension of L2 students with ASD; namely: 1) individualistic problem-solving strategies, 2) working memory and main idea comprehension, 3) forms of scaffolding and teaching methods as well as 4) language proficiency. The discussion sheds light on how the way in which these four factors interplay when teaching reading comprehension to L2 students with ASD is relevant for teachers as it identifies the strengths of students with ASD through a resource perspective. Adaptations that could be implemented based on the results, align with Swedish policy documents. Thus, future interventional studies that combine the four factors found in the results could be significant for teachers working with EFL students with ASD.

Introduktion: Autismspektrumtillstånd (AST) är en komplex neurologisk funktionsnedsättning som börjar tidigt i livet, under spädbarnsåldern eller i barndomen. De största utmaningarna för individer med AST ligger inom områden för social interaktion och kommunikation med andra människor, samt repetitivt beteendemönster. Syfte: Att utforska föräldrars erfarenheter och upplevelser av att vara förälder till ett barn med autismspektrumtillstånd (AST). Metod: En beskrivande allmän litteraturöversikt med kvalitativ ansats gjordes enligt Friberg (2017). Litteraturöversikten baserades på 10 vetenskapliga originalartiklar. Teoretisk referensram var Antonovskys teori, känsla av sammanhang, KASAM.  Resultat: I resultatet presenteras tre kategorier: Brist på kunskap och förståelse, beskriver föräldrars erfarenheter av diagnosprocessen. Hälsa och autismens påverkan på familjen, beskriver föräldrars hälsa och upplevelser i det vardagliga livet. Välbefinnande, beskriver föräldrars sätt att kunna återhämta sig och få respit.  Slutsats: Denna studie visade att föräldrar till barn med AST upplever stor stress och arbetsbelastning, både psykiskt och fysiskt, vilket beskrivs i studien som osynligt för samhället. I studien framkommer det att inom hälso- och sjukvården är det svårt att få en tidig diagnos, på grund av brist på kunskap och förståelse hos vårdpersonalen och när diagnosen väl var fastställd kunde det vara svårt för vissa föräldrar att hantera situationen. Föräldrar i studien upplevde utmaningar i olika miljöer, inklusive hemmet, offentliga platser, hälso- och sjukvården samt skolan. Studien visade på samhällets brist på förståelse för AST och dess stereotypa syn på barns beteende, vilket bidrar till att föräldrar känner sig dömda, missförstådda och isolerade. Trots detta har majoriteten av föräldrarna en stor motståndskraft (resiliens) och flera föräldrar i studien beskrev att ha ett barn med AST bidrog till att de har fått en ökad personlig utveckling, en mer jordnära livssyn på livet samt en glädje för barnets framsteg i livet. / Introduction: Autism Spectrum Disorder (ASD) is a complex neurological impairment that begins early in life, during infancy or childhood. The greatest challenges for individuals with ASD lie within the areas of social interaction and communication with other people, as well as repetitive behavior patterns.  Aim: To explore parent’s experiences and perceptions of being a parent to a child with autism spectrum disorder (ASD). Method: A descriptive literature review with a qualitative approach was conducted according to Friberg (2017). The literature review was based on ten original scientific articles. Antonovsky’s theory, sense of coherence, SOC was used as the theoretical framework. Results: The results are presented in three categories: Lack of knowledge and understanding, which describes parent’s experiences of the diagnostic process. Health and the impact of autism on the family, which describes parent’s health and experiences in everyday life. Well-being, which describes parent’s ways of being able to recover and get respite.  Conclusion: This study demonstrated that parent’s of children with ASD experience significant stress and workload, both mentally and physically, which is often invisible to society. The study reveals that within healthcare, it is often challenging to get an early diagnosis due to a lack of knowledge and understanding among healthcare professionals. Once the diagnosis is established, it can be difficult for some parent’s to handle the situation. The parent’s in this study experienced challenges in various environments, including the home, public places, health care, and school. The study highlights society’s lack of understanding of ASD and stereotypical views on children’s behavior which contribute to parent’s feeling judged, misunderstood, and isolated. Despite this, most parent’s demonstrate a resilience for adversity, an enhanced personal growth, a more realistic perspective on life, and a joy for their children’s achievements in life.

Abstrakt Bakgrund: Ungefär en procent av världens barn har autismspektrumtillstånd, en funktionsnedsättning med brister i kommunikation, interaktion, perception och beteende. Barnets behov och beteende skapar utmaningar i familjelivet. Föräldraskapet kan vara krävande med svårigheter att prioritera och hitta en balans i vardagen. Syfte: Att belysa föräldrars erfarenheter av att leva med barn som har autismspektrumtillstånd. Metod: En litteraturstudie baserad på tolv kvalitativa studier. Databassökning genomfördes i Cinahl, Psycinfo och Pubmed. För att analysera studierna användes Fribergs femstegsmodell. Resultat: Analysen resulterade i tre huvudkategorier: Livet blir aldrig detsamma, Vardag på bristningsgränsen och Pressad tillvaro. Samt tio underkategorier: Ett chockartat besked, Utlämnad i vårdens händer, Kunskapens avgörande roll, Barnets behov går först, Börda som tynger ned, Kämpa med ekonomin, I ett utsatt läge, Oro för framtiden, Relationen skakas om och Vikten av stöd. Konklusion: Föräldrar beskrev att kunskapen om autismspektrumtillstånd var låg. Vardagen påverkades socialt, känslomässigt och ekonomiskt. För att se helhet och arbeta personcentrerat bör sjuksköterskor reflektera över sin medvetenhet och förståelse för människors olika kunskap, bakgrund och kultur. / Abstract Background: Approximately one percent of the world's children have autism spectrum disorders, a disability with deficits in communication, interaction, perception and behavior. The child's needs and behavior create challenges in family life. Parenthood can be demanding with difficulties in prioritizing and finding a balance in everyday life. Aim: To illuminate parents' experiences of living with children who have autism spectrum disorder. Methods: A literature study based on twelve qualitative studies. Database search was carried out in Cinahl, Psycinfo and Pubmed. Friberg's five-step model was used to analyze the studies. Results: The result of the analysis presents in three main categories: Life will never be the same, Everyday life on the breaking point and Existence under pressure. As well as ten subcategories: Shocking information, Left in the hands of healthcare, The decisive role of knowledge, The child's needs come first, Burden that weighs down, Struggles with economy, In a vulnerable position, Worry about the future, Ordeals in the relationship and The importance of support. Conclusion: Parents described that knowledge about autism spectrum conditions was low. Everyday life was affected socially, emotionally and financially. Nurses should work person-centred and have a holistic view, reflect on their awareness and understanding of people's different knowledge, background and culture.