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Research

Learning from autism spectrum disorder

The Autism Research Centre makes a difference in the lives of people with autism spectrum disorder (ASD). Our research is helping us learn more about how to recognize ASD in young children, improve health care for people with ASD, and find better ways to educate professionals and the public.

Current research projects

Pathways to better developmental health in autism spectrum disorder: Phase III

Principal investigator: P. Szatmari
Halifax site PI: I. Smith
Funding: Canadian Institutes of Health Research

People with ASD follow different developmental paths. The Pathways study has mapped these paths for a large group of Canadian children, starting when they were diagnosed as preschoolers. The study looks at factors such as children’s social and communication abilities, families’ well-being and communities treatment resources, determining which factors are associated with better outcomes for children and for families. In Phase III of the study, the Pathways children are entering adolescence, and the research team is addressing new questions about adjustment to this developmental stage.

Novel conceptual model of early symptom development in ASD: Role of attention control and emotional regulation in the emergence of ASD

Principal investigator: L. Zwaigenbaum, S.E. Bryson
Funding: Canadian Institutes of Health Research

This study is investigating the developmental pathways leading to the emergence of ASD in high-risk infants (i.e., younger siblings of children with ASD). We are interested in looking at the early behavioural and physiological markers of ASD in the first 3 years of life, with particular emphasis on the relationships among early attention control, joint attention and emotional regulation. We hope that this approach will help us to establish a threshold for earlier detection, diagnosis, and treatment of ASD. 

We are currently recruiting 6- to 12-month-old siblings of children with a diagnosis of ASD, and 6- to12-month-old siblings of children with no history of ASD.

Optimizing impact of community-based early intervention for children with autism spectrum disorder

Principal investigator: I.M. Smith
Funding: Canadian Institutes of Health Research

We hope to identify characteristics that might tell us in advance which children will have the best responses to the early intensive behavioural intervention (EIBI) program in Nova Scotia. It is important to make sure that the program has the best possible impact for the most children in return for the financial and time investment in these services. With this information, we could make changes that we hope would improve children’s outcomes in the program. We are also interested in learning what measures may be related to better quality of life for families.

Learning and attention-related comorbidities in ASD

Principal investigators: S.E. Bryson, I.M. Smith
Funding: NeuroDevNet

Siblings of children with ASD are not only at increased risk for ASD than the general population, but they are also at increased risk for language and learning delays and disorders. We have followed a large group of high-risk siblings from infancy, and this group is now reaching 8-12 years of age. Using these participants, we will be look more closely at learning, attention and executive functioning to help further improve our understanding of the relationship between challenges that emerge in school-aged siblings (e.g., ADHD) and developmental pathways from infancy. 

Responding to the needs of youth with ASD in the emergency department: Stakeholder consultation and outcome measure development

Scientific co-principal investigator: J.H. Filliter
Administrative co-principal investigators: K. Kempton, G. Rose-Williams
Funding: IWK Foundation Level I TRIC Grant

We plan to develop an intervention to help ensure children and teens with Autism Spectrum Disorder (ASD) receive services that meet their needs when they are having a mental health crisis. In the first part of this project, we will seek input from parents of youth with ASD, as well as from health care providers who work in the Emergency Department and those who specialize in the care of children and teens with ASD. We will ask them about aspects of current services are helpful and about improvements that could be made to help meet the needs of youth with ASD. Learning about what is important to parents and health care providers will also help us make sure that our intervention is making a difference in the things that matter to them.

We are currently recruiting children and teenagers with autism spectrum disorder who have visited the IWK Emergency Department during an emotional or behavioural crisis. To learn more about participating, please call the Autism Research Centre at 902-470-7275 or e-mail us at arc@iwk.nshealth.ca.

An examination of vaccination rates and related factors in children and adolescents with ASD

Scientific principal investigators: J.H. Filliter, L. Dodds
Funding: NSHRF Establishment Grant

Children and teens with autism spectrum disorder (ASD) may not be fully vaccinated for several reasons, including: 1) parent/guardian concern that vaccines may contribute to ASD or make symptoms worse, 2) difficulty with medical procedures, including needles, in many youth with ASD, and 3) other factors that result in people being hesitant about or missing vaccinations. Unfortunately, we don’t know much about vaccination rates in youth with ASD, nor do we understand all of the factors that may contribute to them.

We plan to conduct two studies. The first will tell us how many youth with ASD living in Nova Scotia are vaccinated. Using birth, health, and vaccination databases, we will examine how often youth with ASD receive vaccinations at school compared to their siblings and their peers without ASD. We expect to find lower vaccination rates in youth with ASD than in comparison groups. In the second study, we will explore factors that may influence vaccination of youth with ASD. We will ask parents of youth with ASD to participate in focus groups and complete surveys. We are interested in learning what parents consider when deciding about vaccinating their children with ASD. We also want to understand what encourages or discourages vaccination in this population.

This research is s important because vaccines are critical for our disease prevention strategy and individuals with ASD represent at least 1% of the population. Low rates of vaccination in youth with ASD would expose them and others to increased risk of infectious disease, The results of this study will provide important evidence to support policy and practice. If we find that youth with ASD are under-vaccinated, public health officials, researchers, clinicians, and families will need to work together to address this issue. Individuals with ASD have a hard time accessing health care services throughout their lives. This places them at increased risk for a wide range of medical problems. Our healthcare system must begin to respond to the unique needs of people with ASD. Working to ensure access to vaccination is an important step in this direction.

Antipsychotic monitoring in children and adolescents with ASD

Scientific co-principal investigator: J.H. Filliter
Funding: IWK Establishment Grant

In recent years, the Food and Drug Administration (FDA) has approved the use of second generation antipsychotics (SGAs), including Risperidone (in 2006) and Aripiprazole (in 2009), to treat irritability in children and adolescents (youth) with autism spectrum disorder (ASD). It has been established that SGAs can produce a number of side effects including: increased appetite, weight gain, type 2 diabetes, cardiac and neurological symptoms. As SGAs can be associated with serious side effects, careful monitoring is a critical component to prescribing these medications to youth with ASD. Specific practice guidelines have been developed to support physicians in monitoring youth who are prescribed SGAs.

In this study, we will be focusing on the guidelines put forward by the Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotics in Children (CAMESA). Anecdotal evidence suggests that it may be particularly challenging to monitor SGAs in youth with ASD, for whom medical procedures can be very challenging. Core and associated symptoms of ASD can make it difficult for youth to: 1) understand the information and instructions provided by clinicians, 2) communicate their own needs, 3) tolerate changes in their typical routines, 4) adapt to unfamiliar healthcare environments, 5) interact with unfamiliar healthcare providers, and 6) be exposed to stimuli that may exacerbate existing sensory sensitivities. Add to this a high rate of specific medical fears and phobias and it is not surprising that physicians experience difficulty carrying out guideline-consistent monitoring of SGAs in youth with ASD.

Considerable research has been conducted regarding the use of SGAs in youth with ASD, particularly regarding the efficacy of these drugs in decreasing symptoms such as irritability and aggression. However, we know very little about: 1) rates of adherence to monitoring guidelines for youth with ASD who are prescribed SGAs and 2) barriers that contribute to difficulty monitoring SGAs in this population. We intend to conduct a series of studies to address these gaps in knowledge. We expect that this project will begin to elucidate the difficulties that providers face in monitoring SGAs in youth with ASD and will help to inform follow-up prospective and retrospective studies of monitoring practices. Our eventual goal is to develop youth-, family-, provider-, and/or system-level interventions to support SGA monitoring in youth with ASD.

Earlier detection and diagnosis of ASD in school-age children: A School-Health-Autism Research Partnership (SHARP) initiative

Scientific principal investigator: I.M Smith
Funding: IWK Foundation TRIC Level 3 Grant

Currently, children suspected of having autism spectrum disorder (ASD) after they enter school can wait a long time for specialist diagnostic assessments by the IWK Autism Team. In this School-Health-Autism Research Partnership (SHARP) study, clinicians and researchers from the IWK have joined forces with professionals from the Halifax Regional School Board (HRSB) to test a better way of assessing young school-aged children for possible ASD. The SHARP team will offer a coordinated assessment for children in grades 1 through 3 whose school-based teams, including the children’s parents, agree would benefit from a multidisciplinary ASD assessment. With grant funding from the IWK’s Translating Research Into Care program, we will implement and evaluate this collaborative assessment model, compared to usual care. We anticipate that the new approach will yield more timely diagnosis of ASD in the early school years. In turn, we expect improved parent, teacher, and healthcare provider satisfaction, and more efficient use of resources.

Preschool Autism Treatment Impact (PATI) Study

Scientific principal investigator: I.M Smith

Funding: Canadian Institutes of Health Research, New Brunswick Health Research Foundation, Nova Scotia Health Research Foundation

The well-documented increased rate of diagnosis of autism spectrum disorder (ASD) has put pressure on publicly funded services to meet the needs of these children and their families. This has led to urgent calls by policy makers for evidence concerning the cost-effectiveness of early behavioural intervention services. The Preschool Autism Treatment Impact (PATI) study addresses this need by gathering critical information about children’s everyday functioning and behaviour, as well as the costs of intervention services undertaken by the public sector and by families. This study is the first of its kind in Canada to assemble a team consisting of researchers with expertise in ASD, health economists, health policy makers, and child development specialists from two provincial governments (New Brunswick and Nova Scotia). Data have been collected from over 300 families served by 15 teams across the two provinces.


Graduate student projects

Stephanie Allen (doctoral student)

Identifying ways to improve surgical experience for children with autism spectrum disorder, their parents, and healthcare providers.

People with autism spectrum disorder (ASD) are a growing group of healthcare service users, yet they have commonly been left out of research that focuses on ways to improve health service delivery. This dissertation research starts to bridge this gap, through a series of studies that aim to improve surgery related experiences for children with ASD, their families, and healthcare providers. The first study involved talking to parents of children with ASD who have had surgery, and healthcare providers with experience caring for children with ASD to better understand the challenges and needs associated with providing high quality surgery-related care. Results from this first study will be used to build a novel online-program to support healthcare providers in providing high quality surgical care for children with autism spectrum disorders. The next study involves testing this program to see if healthcare providers find it helpful, and whether it has a positive impact on the experiences of children and families that they provide care for.

Erin Dempsey (doctoral student)

Language development in children with autism spectrum disorder: The roles of play and cognition

Play with objects predicts language development in typically developing (TD) children and in children with autism spectrum disorder (ASD). Cognitive skills such as the ability to control one’s attention may impact the way children play—the ability to shift attention makes it easier to disengage from one object and explore another, helping to develop diverse interactions with objects. This study seeks to examine the relations between object interest, cognition and language development in TD and children with ASD.

We are currently recruiting 3- to 6-year-old children with a diagnosis of ASD and 2- to 6-year-olds who are typically developing. To learn more about participating, please call the Autism Research Centre at 902-470-7275 or e-mail us at arc@iwk.nshealth.ca.

Loriann Williams (doctoral student)

Efficacy of a brief intervention targeting a "low responder" profile in preschoolers with autism spectrum disorder

This research aims to develop an intervention for preschoolers who a) are diagnosed with an ASD, b) have not yet reached the age of eligibility to participate in the province’s publicly funded early intensive behavioural intervention (EIBI), c) are non-verbal or have low verbal ability, and d) show deficits in skills related to play, as well as low levels of positive emotion, like smiling and sharing laughter.

We know play is important for children in terms of learning and socializing with peers, and positive emotion sharing has a role in keeping social interactions going so that learning opportunities can be extended. Play and positive emotion have both been found to be related to favourable outcomes in the provincial intervention program (EIBI). It’s hoped that by bolstering these important skills, children’s potential will be maximized as they go on to participate in the EIBI program, to elementary school, etc. Parent training will also be a focus of this research, whereby parents will be coached in the strategies used with their children in this intervention so that they may implement the intervention at home, optimizing benefit for their children.

Kim Tan-MacNeill (doctoral student)

Sleep problems in children with neurodevelopmental disorders: barriers and facilitators to treatment and development of an online intervention for insomnia

Sleep problems, particularly insomnia, are incredibly prevalent in children with neurodevelopmental disorders, including those with Autism Spectrum Disorder (ASD), Attention-Deficit Hyperactivity Disorder (ADHD), Fetal Alcohol Spectrum Disorder (FASD), and Cerebral Palsy (CP). These sleep problems can have widespread negative impact on both children and their families. Using a series of online focus groups and interviews, we are exploring the perspectives of parents of 4-12 year old children with these neurodevelopmental disorders, as well as the health care professionals (HCPs) who work with them (including physicians, psychiatrists, nurses, clinical psychologists, occupational therapists, & behaviour analysts) on the barriers and facilitators they have experienced in seeking, accessing, and providing or implementing treatments for insomnia.

The results of these focus groups will be used to help develop an online intervention to treat insomnia in children with neurodevelopmental disorders, called Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD). Further research will include reviewing the literature on internet-based interventions for families of children with neurodevelopmental disorders, as well as usability testing of the website itself.

We are currently recruiting parents of and HCPs who work with children with ADHD, FASD, and CP -- for more information or to participate, please visit either http://tinyurl.com/hcpndd or http://tinyurl.com/parentndd .