In the News

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of autism but also include data about functioning, participation, and environmental barriers and facilitators.”

Dr. Olaf Kraus de Camargo  //  Developmental Pediatrician

 

MacART is laying the foundation for creating a systematic way of linking scientific research on autism at McMaster University to clinical practice at McMaster Children’s Hospital.

The physical proximity of McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University has a number of characteristics that provides the rare opportunity for collaborative research. Taking advantage of existing university and clinical infrastructure and cross-appointments for clinicians at the university, autism experts from these organizations are coming together to integrate autism research into clinical practice.

The focus of MacART members’ research is in the areas of basic science, clinical practice, clinical research, epidemiology and statistical modelling, knowledge translation and exchange, and social science research. By promoting the collaboration of stakeholders across disciplines, MacART is reducing barriers to implementing research in clinical practice, with the goal of advancing autism care through meaningful research.

Learn more about our research HERE.

Education

MacART members are now supervising more than 50 research trainees at the undergraduate, graduate, and postgraduate levels, and are engaged in the mentoring of junior and intermediate faculty members.

In the future, we intend to establish research and clinical training programs for students in McMaster’s undergraduate medical, health sciences, and psychology programs, and for residents and fellows in Pediatrics and Psychiatry.

By training and mentoring emerging researchers and practitioners, we will help to solidify their understanding of and commitment to using basic science to inform their clinical practice, and to use their clinical experience to help formulate research questions. It is our belief that involving these learners in MacART educational activities will promote their use of practices that advance autism care through meaningful research.

Community

“Our scientists are working collaboratively with local clinicians to generate the evidence needed to improve autism services. This symposium is a great example of McMaster’s community engagement efforts.”

Dr. Patrick Deane // President & Vice-Chancellor // McMaster University

 

The community engagement component of MacART strives to work with stakeholders and involve them as partners in every step of the research process.  By doing so, the questions that drive research begin to change. They become more meaningful because they address the real day-to-day challenges faced by children and their families, and the clinicians supporting them.

MacART aims to increase participation and involvement of members of the McMaster and Hamilton communities in the research process. With community members driving the research, new and relevant knowledge can be produced to bridge the research-to-practice gap in autism and advance autism care through meaningful research.

Policy

“People whose lives are connected to the challenge of autism can share knowledge – from clinicians to educators to parents – and what an amazing opportunity that is. We have a real opportunity to translate challenges into research, and research into practice that will help families living with autism.”

Rob MacIsaac  //  President & CEO // Hamilton Health Sciences

 

Policies should be created using the best available evidence that make positive impacts on the lives of Autistic individuals, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about autism supports/service funding. Along with the wide-ranging expertise of its many autism experts, MacART is set to act as a highly credible source of evidence-based information to influence and inform public policy about the provision and funding of autism diagnosis, services, and family supports.

MacART will continue to find ways to collaborate with policymakers to both learn more about the policymaking process, and to contribute our expertise and knowledge to inform policymaking, in order to advance autism care through meaningful research.

Statement from MacART on World Autism Awareness Day 2019

April 2, 2019

World Autism Awareness Day is April 2nd – an annual observance day to recognize those living on the autism spectrum. Here in Canada, 1 in 66 children are diagnosed with autism spectrum disorder (ASD).

 

The McMaster Autism Research Team (MacART; www.macautism.ca) is proud to celebrate World Autism Awareness Day. MacART is a partnership between McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University that aims to bridge the research-to-practice gap in ASD. MacART is designed to foster collaboration among individuals, families, researchers, clinicians, educators, and policymakers whose lives and work are touched by ASD.

 

Our team members and trainees continue to work on various innovative research projects. One example is a feasibility project exploring the adaptation of the Family Check-Up (FCU) program for caregivers of children with ASD. The FCU is a brief, evidence-based, assessment-driven intervention that uses a strength-based and motivational interviewing approach to engage caregivers in the prevention and treatment of child emotional and behavioural problems. MacART co-Director Dr. Terry Bennett, along with Drs. Irene Drmic and Vivian Lee and other MacART members, are the first research group to investigate the utility of the FCU program in Canada, in addition to testing its acceptability for families of children with ASD. “The healthy development and emotional well-being of children with ASD and their parents/caregivers is tightly linked. We know this,” Bennett says. “It’s time to act on this knowledge to create new programs of care that support and strengthen families. Children deserve it and so do all the important people in their lives.”

 

Further pioneering work is also being done by the next generation of autism researchers. Mackenzie Salt recently defended his PhD dissertation, which involved developing a new methodology using observations of people with ASD interacting with others in a naturalistic setting to make conclusions about how people with ASD interact in everyday life. There were distinct differences in how pragmatic language abilities were used depending upon who the person with ASD was interacting with – suggesting the pragmatic language deficits seen in ASD may not be deficits and may be more akin to cultural differences. “This study is the first to look at communication between adults with ASD,” Mackenzie says. “And being a person with ASD myself, I hope that this research can be used to give a more accurate picture of the communication abilities of people with ASD in everyday life and to improve acceptance and reduce stigma.”

 

These projects are just two examples of the many initiatives and collaborations MacART currently has underway – all with the overarching goal of advancing autism care through meaningful research.

 

Click here to download a copy of this statement.

MacART members to study feasibility of Family Check-Up program for ASD

October 9, 2018

Dr. Teresa Bennett and her postdoctoral fellow, Dr. Vivian Lee, are leading an investigation into the acceptability of the Family Check-up (FCU) program for caregivers of children with Autism Spectrum Disorder (ASD). The Family Check-up is a brief, evidence-based, assessment-driven intervention that uses a strength-based and motivational interviewing approach to engage caregivers in the prevention and treatment of child emotional and behavioural problems (EBP). Although this intervention has been well studied in the United States, Dr. Bennett and other MacART members are the first research group to investigate the utility of the FCU program in Canada, in addition to its acceptability for families of children with ASD and EBP.

With support from Hamilton Health Sciences through the Research Strategic Initiatives – Request for Applications award, this feasibility project will provide invaluable insight into the critical components to consider when implementing and adapting established intervention for a new population (i.e. ASD) as well as areas that require additional consideration when embedding a new intervention into a new healthcare system. The group hopes that the study will have an impact on our understanding of how modifying and supporting parental practices may have on changing problem behaviors and other mediating factors that benefit children with ASD with EBPs in toddlerhood or early preschool years.

MacART member awarded CIHR Health Impact Systems Fellowship

September 10, 2018

MacART is pleased to announce that one of our members, Dr. Stephen Gentles, has been awarded a Health System Impact Fellowship from CIHR for a project titled "Strengthening the health system to support caregivers of children with autism to engage in their child’s care". The HSI Fellowship creates opportunities for fellows to apply their research to critical challenges in healthcare that are addressed by health systems and related organizations.

The proposed fellowship project is a partnership with Autism Ontario, and has two aims. First, is a review of the literature using systematic methods to summarize what is known about the factors influencing parent involvement in their child’s care. Second is the development of a new measure of parents’ readiness and ability to meet these demands for involvement. Information for developing this measure will come from the literature review and from interviewing people on both sides—parents of children with ASD, and professionals that provide ASD services. The measure will then be tested to ensure it works well in a clinical setting. When ready, it will be made available, free of charge, for care providers across Canada to monitor and improve service delivery to families of children with ASD.

Autism Spectrum Disorder (ASD) is estimated to affect 1 in 66 children, or roughly 350,000 people, in Canada. The impact is far greater when one considers the complex needs of families affected by ASD. Autism Ontario is a non-profit organization whose goal is to strengthen support for caregivers and families of children with ASD, and it works with government to understand the needs and find solutions. More and more, parents or caregivers of children with ASD are being asked to play a role in their child’s intervention services and care. While research shows such involvement can be useful, the extra demands can be difficult for some caregivers for a variety of reasons. Health, education and other systems of care need a way to better understand, measure, and support parents’ readiness to meet demands of engaging in care. With the right knowledge and measurement tools, such systems can tailor and adjust how they involve caregivers to be more sensitive to their unique needs and strengths. This will prepare such systems to better support family health at a critical time, promoting better outcomes.
 

We are delighted to support this research program, which directly reflects the partnership between MacART and Autism Ontario and the vision to advance autism care through meaningful research.

Reframing Optimal Outcomes in Autism

June 25, 2018

A new Viewpoint article in JAMA Pediatrics speaks to the need to redefine the term ‘optimal outcomes’ in autism. The Viewpoint, written by MacART co-Director Dr. Stelios Georgiades and colleague Dr. Connie Kasari of the University of California – Los Angeles, argues for the need to rethink what is meant by “optimal outcomes”, which has tended to be defined as those people with autism who have experienced a decrease in symptoms to the point where they no longer meet diagnostic criteria.

However, rather than focusing on reaching milestones compared to ‘typical’ peers, optimal outcomes should instead be redefined in a more inclusive way, with a focus on progress measured by personal goals. Most importantly, those goals should be defined by individuals with autism and their families.

This is discussed further in a blog post on the Autism Speaks website, urging researchers and clinicians to reconsider the goal of autism services. In autism intervention research, knowing when to change something and to what are key questions that the research community is only starting to address. This makes this Viewpoint incredibly timely and important.  It fits within MacART’s framework and goals of advancing autism care through meaningful research; we consider this piece to be a guiding statement in how we can conduct research that is indeed meaningful to the autism community.

MacART at the International Society for Autism Research (INSAR) Annual Meeting - 2018

May 9, 2018

Advancing autism care remains a global priority, as over 2000 scientists, clinicians, trainees, and self-advocates gathered last week from May 9-12th at Rotterdam, Netherlands, for the 2018 International Society for Autism Research (INSAR) Annual Meeting. Now in its 17th year, INSAR brings together top ASD researchers and clinicians from around the world to exchange and disseminate the latest scientific progress in autism research.

Excellent representation of MacART at INSAR gave members the opportunity for extensive collaboration and exchange of research within the international autism community. We are pleased to see many more presentations by MacART members this year than last! 

MacART members took part in the following sessions - click on the title to access the abstract:

Oral Sessions: 

 

Poster Presentations:

Panel:

Research was featured on a panel focusing on new methods and discoveries surrounding the female autism phenotype.

 

The McMaster Autism Team arriving at INSAR 2018 (pictured, left to right, are Stephen Gentles, Marg Spoelstra, Stelios Georgiades, Vivian Lee, Eric Duku, Ayesha Siddiqua, and Magdalena Janus): 

 

Dr. Stelios Georgiades presenting Pathways in ASD Data, "Examining 'Turning Points' in Trajectories of Symptom Severity in Children with Autism":

MacART trainee member Ayesha Siddiqua presenting her work with EDI data, "Social Determinants of Prevalence of Children with Autism Spectrum Disorder: A Population Level Study":

Perspectives from the 2018 CASDA Leadership Summit

April 23, 2018

By Dr. Stephen Gentles and Dr. Vivian Lee

It was fitting that the 2018 Canadian Autism Leadership Summit, hosted by the Canadian Autism Spectrum Disorders Alliance (CASDA), happened in Ottawa, Canada – the epicenter of political action and the host site of national strategies and social change. The meeting was an intense but incredibly rewarding two days of learning, networking, and action. Representatives from the federal (Senators and MPs) and provincial governments (ministry representatives) were present as well as researchers, clinicians, autistic advocates, family members, frontline workers from across Canada – a passionate group of individuals advocating for a national strategy in autism care.

Through the well-curated panels, we learned about exciting national collaborations and projects, as well as the most acute needs in autism.  Presenters painted pictures of how ambitious collaborations were implemented in their jurisdictions to achieve complex restructuring of systems to improve care. We heard from clinicians, researchers, and self-advocates about the dire lack of mental health support for those with ASD and the near absence of assistance for families in Canada’s rural and remote indigenous communities.  A session on accessibility legislation helped us understand how the simple concept of inclusion is so important to solving the problems that were so emotionally brought to life by the self-advocate panel later in the summit. We listened intensely to the lived-experience of #acutallyautistic individuals whose voices we all need to hear, recognize and respect as we move forward in our individual endeavors. 

Importantly, beyond learning and listening, we also discussed solutions and paths of action.  Near the end of the summit we faced crucial questions in a peer-to-peer session about the future of a National Autism Strategy, which seems to be at a pivotal crossroads. The Summit made clear how such a strategy is poised to make profound differences in the lives of Canadians affected by ASD. These are exciting times in autism policy, where, in the opening words of Senator Jim Munson, “We have work to do.”

Statement from MacART on World Autism Awareness Day 2018

March 29, 2018

April 2nd is annual World Autism Awareness Day – a day to recognize all those living on the autism spectrum. Here in Canada, 1 in 68 children are diagnosed with autism spectrum disorder (ASD).

 

The McMaster Autism Research Team (MacART) is proud to celebrate World Autism Awareness Day. MacART is a partnership between McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University that aims to bridge the research-to-practice gap in ASD. MacART is designed to foster collaboration among the families, researchers, clinicians, educators, and policymakers whose lives and work are touched by ASD.

 

MacART has numerous initiatives underway. This includes collaborations with groups at McMaster University (Offord Centre for Child Studies, CanChild, MacDATA Institute, Health Leadership Academy), community organizations (such as CASDA, Autism Speaks, Autism Ontario, Woodview Mental Health and Autism Services, and South Asian Autism Awareness Centre), and international projects (as the only Canadian site in an NIH-funded study to develop a social-communication measure for neurodevelopmental disorders). And after a successful 2017 Research Stakeholder Symposium, we are using the stakeholder feedback we received to guide the development of future training endeavours.

 

Our team members continue to produce cutting-edge research. Earlier this year, a study led by MacART member Dr. Karun Singh pinpointed a gene that is linked to neurodevelopmental disorders, including autism. “Our goal is to use these findings and search for medications that can be used to treat different forms of autism,” said Dr. Singh, Scientist with McMaster’s Stem Cell and Cancer Research Institute.

 

We also continue to work on the Pediatric Autism Research Collaborative (PARC) Project together with clinicians at McMaster Children’s Hospital, embedding a research protocol into ASD Services. “We are looking to engage families in research in a way that minimizes extra burden for them,” said Dr. Irene Drmic, clinical psychologist at Ron Joyce Children’s Health Centre and a lead investigator on the PARC Project. “This research will then help us improve the services those families are receiving and continually advance clinical care.”

 

MacART’s various projects are spread across our foundational pillars – research, education, community and policy – all of which aim to advance autism care and help foster increased understanding and acceptance.

 

Click here to download a copy of this statement.

Introducing the Learning Health System - A Visit from Dr. Charles Friedman

March 28, 2018

 

On Thursday April 26th, we are privileged to have Dr. Charles Friedman, a world-renowned expert in Learning Health Systems from the University of Michigan, visiting Hamilton.   In the morning he will visit the Ron Joyce Children’s Health Centre to speak to our team on establishing a clinical research system using the Learning Health System framework.

 

We are then pleased to extend this invitation to his Keynote Address to the larger Hamilton research community on the afternoon of April 26th.  This will take place at McMaster Innovation Park; opening remarks will be at noon, followed by the Keynote Address and a panel discussion.

 

This event offers our community the opportunity to learn more about their role in creating a learning health system here in Hamilton – where data and experience are integrated with evidence, and that knowledge is put into practice. The result is higher quality, safer, more efficient care for patients.   

 

Please see the poster for details.  If you are interested in attending the Keynote Address and Panel, please RSVP by Friday April 13th to autism@mcmaster.ca.

MacART part of multidisciplinary CIHR grant for economic forecasting

March 7, 2018

MacART is pleased to announce it is collaborating with CHEPA – the Centre for Health Economics and Policy Analysis – on a newly-awarded operating grant.

The one-year $265,000 Operating Grant is for economic forecasting, part of a joint initiative of the CIHR and the J.W. McConnell Foundation that will see CIHR contribute $175,000 and the J.W. McConnell Family Foundation contribute $90,000.

The research project, Investing in primary and secondary prevention: Economic forecasting to inform policies regarding amortization of program costs, has two goals:

  1. To develop a framework that lays an analytic foundation to support implementation of cost amortization in prevention and early intervention; and
  2. To conduct four economic forecasting simulations that illustrate the analytic framework in action in the areas identified by CIHR in the call for proposals.

The four simulations are:

  • an early psychosis intervention program (mental health);
  • an integrated autism program based on intensive behavioural interventions and applied behaviour analysis (child and youth health);
  • a diabetes prevention program that integrates diet, weight loss and physical activity (food security with a focus on nutrition and diabetes);
  • and a family-nurse partnership program targeted at low-income, first-time mothers to improve outcomes for both the child and the family (intergenerational trauma).

MacART co-director Stelios Georgiades is part of this multidisciplinary team, as the autism expert. The research will be co-led by Jeremiah Hurley, Dean of McMaster University’s Faculty of Social Sciences and a member of CHEPA, and CHEPA Director Jean-Eric Tarride.

For more information, please see http://chepa.org/news/2018/03/06/multidisciplinary-chepa-led-team-awarded-cihr-grant-for-economic-forecasting.

 

Upcoming MacART Representation at INSAR 2018

March 5, 2018

The International Society for Autism Research (INSAR) is holding its annual scientific meeting in the Netherlands on May 9-12, 2018. This is the world’s oldest and largest autism research meeting, and we are honoured to have had numerous abstracts from MacART members be accepted!

Some acceptances featuring MacART members include the following:

Oral sessions:

  • Social determinants of prevalence of children with Autism Spectrum Disorder: A population level Study – including Ayesha Siddiqua, Eric Duku, and Magdalena Janus
  • Parsing the Heterogeneity of Multidimensional Adaptive Behavior Profiles over time in ASD – including Eric Duku, Peter Szatmari, Terry Bennett, and Stelios Georgiades
  • Examining the “Turning Points” in Trajectories of Symptom Severity in Children with Autism – Stelios Georgiades,  Eric Duku, Terry Bennett, and Peter Szatmari
  • Predicting attrition in a longitudinal study of children with autism spectrum disorder – including Eric Duku, Terry Bennett, Stelios Georgiades, and Peter Szatmari

 

Poster sessions:

  • Estimating Social Communication Functioning (ACSF:SC) From ADOS-2 Data: Development Of An Algorithm – including Stephen Gentles, Briano Di Rezze, Peter Rosenbaum, Eric Duku, and Stelios Georgiades
  • Predictors of longer-term language development in language delayed children with ASD – including Peter Szatmari
  • Gender differences in narrative language in 10-year-olds with Autism Spectrum Disorder – including Peter Szatmari, Stelios Georgiades, Terry Bennett, and Eric Duku
  • Psychometric properties of the Merrill-Palmer-Revised Scales of Development in Preschool-aged Children with Autism Spectrum Disorders – including Eric Duku, Peter Szatmari, Terry Bennett, and Stelios Georgiades
  • Child and Parental Correlates of Participation in Sports and Recreational Activities in School-aged Children with Autism Spectrum Disorder – including Vivian Lee, Terry Bennett, Eric Duku, Stelios Georgiades, and Peter Szatmari
  • Temperament mediates the relationship between symptom severity and adaptive functioning in school-aged children with autism spectrum disorder – including Vivian Lee, Eric Duku, Terry Bennett, Peter Szatmari, and Stelios Georgiades
  • Trajectories of maternal depressive symptoms following ASD diagnosis – including Peter Szatmari, Terry Bennett, Stelios Georgiades, and Eric Duku
  • Do Repetitive Behaviours and Restricted Interests Predict Later Cognitive Ability in Children with Autism Spectrum Disorder? – including Terry Bennett, Eric Duku, Stelios Georgiades, and Peter Szatmari

 

This is just a sampling of some of our members’ work – check back after the meeting for a full list and links to the abstracts!

 

 
           
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