Early detection and intervention for infants at risk of autism spectrum disorders

Autism is a developmental disorder that is characterized by abnonnal social interactions and communications as well as repetitive and restricted activities and interests. There is evidence of a genetic component, as 5% of younger siblings are diagnosed if their older sibling has been diagnosed. Autism is generally not diagnosed until age 3 at the earliest, yet it has been shown that early intervention for children with autism can greatly increase their functioning. Because of this, it is important that symptoms of autism are identified as early as possible so that diagnosis can occur as soon as possible to allow these children the earliest intervention. This thesis was divided into two parts. The first looked at the psychometrics of two proposed measures, the Parent Observation Checklist (POC), administered monthly, and the Infant Behavior Summary Evaluation (mSE), administered bimonthly, to see if they can be used with the infant population to identify autistic symptoms in infants who are at high risk for autism or related problems because they have an older sibling with autism. Study 1 reported acceptable psychometric properties of both the POC and IBSE in terms of test-retest reliability, internal consistency, construct validity and predictive validity. These results provide preliminary evidence that parent report measures can help to detect early symptoms of ASD in infants. The POC was shown to differentiate infants who were diagnosed from a matched group that was not diagnosed by 3 years of age. The second part of this thesis involved a telephone interview of parents who reported developmental and/or behavior problems in their high-risk infants that may be early signs of Autism Spectrum Disorder (ASD). During the interview, a service questionnaire was administered to see what interventions (including strategies recommended by the researchers) their at risk infants and affected older siblings were receiving, how satisfied the parents were with them and how effective they felt the interventions were. 3 Study 2 also yielded promising results. Parents utilized a variety of services for at risk infants and children with ASD. The interventions included empirically validated early intervention (e.g., ABA) to non-empirically validated treatments (e.g., diet therapy). The large number of nonempirically validated treatments parents used was surprising, yet parents reported being involved and satisfied, and thought that the services were effective. Parents' perceptions of their stress levels went down slightly and feelings of competence rose when they accessed services for their infants. Overall, the results of this thesis provide new evidence that parent-report methods hold promise as early detection instruments for ASD in at-risk infants. More research is needed to further validate these instruments as well as to understand the variables related to the parents' choice of early intervention for their at risk and affected children.

Comparison of the Behavioural Development of Infants at Low and High-Risk for Autism Spectrum Disorders

By identifying early signs of Autism Spectrum Disorder, early intervention or parent training could be implemented and assist in increasing the developmental trajectory for these infants. This cross sectional study used the Parent Observation of Early Markers Scale (POEMS) to identify early signs of ASD in 69 high-risk (older sibling diagnosed with ASD) and 69 matched low-risk infants' families (no family history of ASD) between 6 and 36 months of age. The preliminary results showed the high-risk children had significantly more elevated POEMS items than the low-risk children at 12, 18,24,30 and 36 months of age. The results suggest that at-risk infants may show signs of ASD as early as 12 months of age, and that the POEMS could be used to guide early intervention or parent training for children 12 months or older.

Needs of High Functioning Teenagers and Adults with Autism (Tips from a Recovered Autistic)

Some of the topics discussed in the article include: Direct Fixations, Gradual Introduction to a Career, Talent and Deficit Areas, Thinking in Pictures, Reading and Language, Social Problems, Recognize Need for Change, Cognitive Differences, Constant Anxiety, Improvement Takes Time, Family Background and Depression, Sensory Problems, Aggressive and Self-Injurious Behavior.

A case study of a high functioning autistic female in a games setting

This study detennined whether or not a high functioning autistic girl can develop game structure strategies that may allow her to become an active participant in a game or sport environment. This qualitative case study involved the in-depth observation and description of one high functioning autistic student whose experience in a game setting would be studied. The type of case study carried out was a combination of descriptive and evaluative. This experience was investigated through structured, individual programming. Through on-site observation, journal entries, and hands on instruction, I was able to describe what progress the autistic student made in tenns of skill development. The results of the study demonstrated that a high-functioning autistic female has the potential to develop the necessary motor skills to participate in the chosen sport of basketball. The observation results and field notes contributed to a movement profile which described her habits of body. Teaching strategies and frameworks utilized during the study were described and listed. Insights and commentary are further provided. A thorough examination of autism and games programming is provided in the literature review.

I Believe in me, not OCB: Evaluation of Group Function-Based CBT as a Treatment for Obsessive Compulsive Behaviour in Four Children with HFA

Researchers have conceptualized repetitive behaviours in individuals with Autism Spectrum Disorder (ASD) on a continuum oflower-Ievel, motoric, repetitive behaviours and higher-order, repetitive behaviours that include symptoms ofOCD (Hollander, Wang, Braun, & Marsh, 2009). Although obsessional, ritualistic, and stereotyped behaviours are a core feature of ASD, individuals with ASD frequently experience obsessions and compulsions that meet DSM-IV-TR (American Psychiatric Association, 2000) criteria for Obsessive-Compulsive Disorder (OCD). Given the acknowledged difficulty in differentiating between OCD and Autism-related obsessive-compulsive phenomena, the present study uses the term Obsessive Compulsive Behaviour (OCB) to represent both phenomena. This study used a multiple baseline design across behaviours and ABC designs (Cooper, Heron, & Heward, 2007) to investigate if a 9-week Group Function-Based Cognitive Behavioural Therapy (CBT) decreased OCB in four children (ages 7 - 11 years) with High Functioning Autism (HFA). Key treatment components included traditional CBT components (awareness training, cognitive-behavioural skills training, exposure and response prevention) as well as function-based assessment and intervention. Time series data indicated significant decreases in OCBs. Standardized assessments showed decreases in symptom severity, and increases in quality of life for the participants and their families. Issues regarding symptom presentation, assessment, and treatment of a dually diagnosed child are discussed.

Completing the picture: the effects of video game practice on verbal and performance I.Q. scores in high functioning children

The strength and nature of the video game practice effect on tests of visual and perceptual skills were examined using high functioning Grades Four and Five students who had been tested with the WISC-R .for the purpose of gifted identification and placement. The control group, who did not own and .play video games on a sustained basis, and the experimental group, who did own a video game system and had some mastery of video games, including the -Nintendo game, "Tetris", were each composed of 18 juniorg:r;-ade students and were chosen from pre-existing conditions. The experimental group corresponded to the control group in terms of age, sex, and community. Data on the Verbal and Performance I.Q. Scores were· collected for both groups and the author was interested in the difference between the Verbal and Performance Scores within each group, anticipating a P > V outcome for the experimental group. The results showed a significant P > V difference in the experimental, video game playing group, as expected, but no significant difference between the Performance $cores of the control and experimental groups. The results, thus, indicated lower Verbal I.Q. Scores in the experimental group relat'ive to 'the control group.' The study conclu~ed that information about a sUbject's video game experience and "learhing style pref~rence is important for a clear interpretation of the Verbal and Performance I.Q. Scores of the WISC-R. Although the time spent on video game play may, 'indeed, increase P~rformance Scores relative to Verbal Scores for an individual, the possibilities exist that the time borrowed and spent away from language based activities may retard verbal growth and/or that the cognitive style associated with some Performance I.Q.subtests may have a negative effect on the approach to the tasks on the Verbal I.Q. Scale. The study also discussed the possibility that exposure to ,the video game experience, in pre-puberty, can provide spatial instruction which will result in improved spatial skills. strong spatial skills have been linked to improved performance and preference in mathematics, science, and engineering and it was suggested that appropriate video game play might be a way to involve girls more in the fields of mathematics and science.

A naturalistic observation of the play behaviour of children with autism spectrum disorders /

Cognitive and social levels of play engaged in by four-to-eight-year-old children with autism spectrum disorders were examined in naturalistic classroom settings. In addition, play at home was compared with play at school via parent and educator interviews. Seventeen school-age children, their educators and caregivers participated in the study. The most frequently observed play behaviours included parallel-functional play, adult interactions and solitary-functional play. The play of the children in the current study was consistent with that of typically-developing preschoolers. Mothers and educators did not differ significantly in their perspectives of the participants' play behaviours. In general, educators' and caregivers' reports were positively related to researcher observations of participants' play behaviours. Methodological considerations and practical implications for the findings are discussed.

A comparison of functional behaviour assessment rating scales in a sample of children and youth with autism spectrum disorders

This study sought to compare the results of the Motivation Assessment Scale (MAS; Durand & Crimmins, 1988), Questions About Behavior Function Scale (QABF; Matson & Vollmer, 1996) and Functional Analysis Screening Tool (FAST; Iwata & Deleon, 1996), when completed by parent informants in a sample of children and youth with autism spectrum disorders (ASD) who display challenging behaviour. Results indicated that there was low agreement between the functional hypotheses derived from each of three measures. In addition, correlations between functionally analogous scales were substantially lower than expected, while correlations between non-analogous subscales were stronger than anticipated. As indicated by this study, clinicians choosing to use FBA questionnaires to assess behavioural function, may not obtain accurate functional hypotheses, potentially resulting in ineffective intervention plans. The current study underscores the caution that must be taken when asking parents to complete these questionnaires to determine the function(s) of challenging behaviour for children/youth with ASD.

The lived experience of mothering a child with autism: a hermeneutic phenomenological understanding

Autism Spectrum Disorder is a complex developmental disorder with increasing prevalence. Despite the significant role of mothers, often seen as primary caregivers, there is limited understanding of this experience. The purpose of this study was to explore the everyday experience of mothers with children with autism. Accounts of lived experience were collected through research conversations with six mothers and analyzed using van Manen’s (1990) orientation to hermeneutic phenomenology. The main themes include: It Can’t Be Autism, The Womb is Extended, The Locus of Other, and The Womb is Now and is Forever. The findings suggest that mothers experienced a transformation from mother to mother with a child with autism; one that mirrors the transformation from woman to mother (Bergum, 1989). In this transformation, mothers move from suspicion of the potential diagnosis to acceptance that they are mothers with children whose needs define them and potentially, mothers whose wombs are forever extended.

Searching for Accommodations within the Ontario Criminal Justice System for Persons with Fetal Alcohol Spectrum Disorder: Views of Social Service Agency and Justice Professionals

Although persons with intellectual disabilities have been conceptualized as having rights to equality in Canada and internationally, there continue to be gaps in the delivery of justice when they are involved within the criminal process. The literature consistently reported that individuals with Fetal Alcohol Spectrum Disorder (FASDs) often experienced challenges within the justice system, such as difficulty understanding abstract legal concepts (Conry & Fast, 2009). In the Canadian legal system, accommodations are available to enable persons with disabilities to receive equal access to justice; however, how these are applied to persons with FASDs had not been fully explored in the literature. In this study, in-depth interviews were conducted with social service agency workers (n=10) and justice professionals (n=10) regarding their views of the challenges persons with FASDs experience in the justice system and their suggestions on the use of accommodations. The findings showed that while supports have been provided for individuals with intellectual disabilities, there has been a lack of specialized accommodations available specifically for individuals with FASDs in accessing their right to justice.

Clinician-Perceived Bridges and Barriers to Parental Implementation of Picture Exchange Communication System (PECS): An evaluation.

Picture Exchange Communication System (PECS) is an augmentative and alternative communicative system that improves communication and decreases problem behaviors in children with Developmental Disabilities and Autism. The mediator model is a validated approach that clinicians use to train parents to perform evidence-based interventions. Parental non-adherence to treatment recommendations is a documented problem. This qualitative study investigated clinician-perceived factors that influence parental adherence to PECS recommendations. Three focus groups (n=8) were conducted with Speech Language Pathologists and Behavior Therapists experienced in providing parents with PECS recommendations. Constant comparison analysis was used. In general, clinicians believed that PECS was complex to implement. Thirty-one bridges were identified to overcome complexity. Twenty-two barriers and 6 other factors also impacted parental adherence. Strategies to address these factors were proposed based on a review of the literature. Future research will be performed to validate these findings using parents and a larger sample size.

Being Relational With Underserved Youth: A Reflective Process

When working with under-served youth, possibly the most important, yet often times the most difficult, thing for practitioners to do is to build positive, trusting, open relationships. This study aims to address this challenge. Two groups of under-served youth were examined, one being teens deemed “at-risk” and one being youth with Autism Spectrum Disorder (ASD). This study was novel in its approach as all efforts were made to ensure the youth's opinions on how to be relational with them were heard. Two youths with ASD were nonverbal and a special picture interview procedure was developed to allow their participation. Three thematic statements emerged from the data collected: 1. Youth need low anxiety relationships. 2. Youth need novel forms of engagement. 3. Youth need us to understand that their actions reflect their histories. The analyses that lead to these statements are described as well as the reasoning and implications of these statements.

A Comparative Analysis of Community-Based Service Providers for "Extreme" Case ASD: Exploring Activity Program Options

The purpose of my research was to examine how community-based organizations in the Niagara region provide programs for children with Autism Spectrum Disorder (ASD), who are considered to represent “extreme” or “severe” cases. A qualitative, comparative case study was conducted that focused on three organizations who provide summer recreation and activity programs, in order to examine the issues these organizations face when determining program structure and staff training; and to understand what the threshold for physical activity is in this type of setting, and how the unique needs surrounding these “severe” cases are met while attending the program. Purposeful sampling was employed to select a supervisor and senior staff member from each organization to discuss the training process, program development and implementation, and the resources and strategies used within their organization’s community-based program. A confirming comparative analysis was comparative analysis of a parents survey with six mothers whose children are considered “severe” indicated that camp staffs’ expectations are unrealistic where as the parents and supervisors have more realistic expectations within the “real world” of camp. There is no definition of “severe” or “extreme” and therefore severity is dependent upon the context.

Cynthia Kim fonds, 2012-2015

Cynthia Kim was diagnosed with Asperger’s syndrome when she was 42 years old. She has contributed articles to Autism Parenting magazine, Thinking Person’s Guide to Autism, and Autism West Midlands’ magazine. She has also written two books on autism, I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults, and Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life.

Navigating Evidence-Based Practice: A Presentation for Parents and Caregivers

Prevalence rates for children with Autism Spectrum Disorder (ASD) have increased dramatically, to the current estimation of 1 in 68 (Centers for Disease Control and Prevention [CDC], 2014). The overall intention of this project is to develop a workshop for families, and caregivers, which will enhance awareness, the importance of evidence-based practice for individuals with ASD and provide local resources that are available. This project involves a literature review of ASDs, evidence-based practice (EBP) and how it affects both families and caregivers. The literature review attempted to answer the question, what are the most popular evidence-based practices and what are the benefits in parents understanding EBP for children with ASD that are currently being utilized today. The purpose of this project is to assist families and caregivers in making well-informed decisions involving the choice of treatments that will have the most positive impact on their children with ASD.