In the News

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of ASD 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 Spectrum Disorder (ASD) 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, ASD experts from these organizations are coming together to integrate ASD 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 ASD 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 individuals with ASD, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about ASD treatment funding.  Along with the wide-ranging expertise of its many ASD 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 ASD diagnosis, treatment, 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.

MacART Member Recognitions

We are pleased to share the good news that some of our MacART members have recently received new funding and appointments.

MacART co-director Dr. Terry Bennett has been appointed as the Jack Laidlaw Chair in Patient Centred Health Care for a five-year term. This is the Chair previously held by Chuck Cunningham, which focuses on the well being of the patient and on research that will improve communication between health providers, patients and their families.  Dr. Bennett will focus on implementing, evaluating and scaling up ecological models of family-centered child mental healthcare.   

Dr. Briano Di Rezze is the recipient of New Investigator Funding from Hamilton Health Sciences. Dr. Di Rezze’s research is focused on developing measures to support clinical practice in rehabilitation research for patients with neurodevelopmental disabilities. This funding is supporting his development of a new tool describing levels of social communication abilities in children with autism, as well as his study of the challenges faced by young adults with disabilities when transitioning into adult roles. The next steps will be to expand these studies to the national level.

Dr. Magdalena Janus has received CIHR funding for her project "Missed opportunities for early intervention: Determinants of prevalence and characteristics of children with impairments unrecognized in health systems by kindergarten age among the 2009 birth cohort of Ontario children".  This project aims to examine why some children who are reported by their teachers as having health impairment or special health needs in kindergarten have not been flagged in the healthcare system prior to school entry. Dr. Janus is also part of groups that received CIHR funding for work to investigate cannabis use in pregnancy and neurodevelopmental outcomes in children. Dr. Eric Duku is also a co-investigator on both of these projects.

Congratulations to all!

Statement from MacART on World Autism Awareness Day 2020

April 2nd is World Autism Awareness Day – a day to recognize all those individuals around the world who live on the autism spectrum. Here in Canada, 1 in 66 children are currently diagnosed with autism spectrum disorder (ASD); globally, more than 70 million people live with autism.

Usually autism-friendly events and activities would be taking place throughout the month with the goal of increasing understanding of autism and inspiring everybody to be kinder and more inclusive. Unfortunately, this year things are going to be different. Due to the COVID-19 pandemic, most events are being postponed and cancelled and many people are doing their part to protect public health by staying home. This is a challenging time for everybody, but especially our families living with autism. With many schools and services closed, this can mean a change to routines and a loss of support. Our message this year is to keep the spirit of Word Autism Month alive and strive to provide kindness and support whenever possible.

The McMaster Autism Research Team (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.

Over the past year MacART has made exciting progress in moving forward policy at various levels. We have been involved in the push for a National Autism Strategy – which would not only facilitate the development and implementation of the large collaborations needed to advance our understanding of autism, but would help translate research evidence into improved policies and practices for those living with autism. At the provincial level, MacART’s Training & Education lead Dr. Mohammad Zubairi served as an expert member of the Ontario Autism Program (OAP) Advisory Panel. “The recommendations put out by OAP Advisory Panel reflect many important conversations and careful consideration of feedback from families and stakeholders representing different sectors,” says Dr. Zubairi.  “It lays out a framework that lends itself to a lot of creativity and collective problem-solving to ensure children and youth and their families get the best support that they need.”

In these difficult times it is critical to ensure families receive the support they need, and we hope that our work will have that sort of widespread impact. Some of our projects and collaborations will look a bit different than usual during this time of physical distancing, but our collaborative work towards advancing autism care through meaningful research will continue.

 

MacART is proud to be supported by our partners:

  • McMaster Children’s Hospital & McMaster Children's Hospital Research Collaborative
  • Hamilton Health Sciences & Hamilton Health Sciences Foundation
  • McMaster University

 

Click here to download a copy of this statement.

Research on parents’ perspectives navigating and becoming engaged in autism-related care

Dr. Stephen Gentles, a postdoctoral fellow with both MacART and Autism Ontario, researches the social psychological needs and responses of parents of children with autism as they navigate intervention. His recently-published paper, “Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care” discusses parents’ perspectives navigating and becoming engaged in autism-related care — specifically at the early stage of coming to understand their child has autism.

Importantly, parents vary in their readiness for involvement in care! This academic article is available to read for free here. The article is also complemented by a blog – available here – that summarizes the research in a briefer and more accessible way.

Post-Doctoral Research Fellowship opportunity!

Researchers at McMaster University are seeking qualified applicants for a post-doctoral research opportunity in the autism field.

Applicants will be eligible for a 12 to 24 month Post-Doctoral Research Fellowship under the supervision of Dr. Stelios Georgiades and Dr. Eric Duku. The position is based at the well-known Offord Centre for Child Studies in Hamilton, Ontario, a research institute within McMaster University.

The successful applicant will have access to a rich and diverse community of researchers and clinician-scientists working in the child and adolescent field of healthy development.

Applicants who are interested in advancing their analytical skills using data from the largest Canadian cohort of a longitudinal autism study (The Pathways in ASD Study) led by Principal Investigator Dr. Peter Szatmari should apply immediately. Significant intellectual resources will be available to the successful applicant. Compensation is competitive and will be assessed based on the successful candidate’s qualifications.

Interested candidates should send their curriculum vitae, a statement of research, and three letters of recommendation to the Pathways in ASD National Coordinator, Mike Chalupka (chalum@mcmaster.ca).

MacART at the Ron Joyce Children’s Health Centre Research Symposium

On Wednesday October 9th 2019, the McMaster Autism Research Team (MacART) was pleased to take part in the 3rd annual Ron Joyce Children’s Health Centre Research Symposium – an event to highlight some of the exciting research being done by clinicians and researchers to help bridge the research-to-practice gap.

 

MacART and Offord Centre team members.
 

Staff from MacART and the Offord Centre for Child Studies were present with a resource table full of reports and informational brochures highlighting the various projects and research studies being conducted by our teams. MacART was also well represented in terms of the event’s speakers, with both co-Directors taking part. Dr. Stelios Georgiades was the keynote speaker, presenting on “A Learning Health System for Neurodevelopmental Disorders”, while Dr. Terry Bennett presented on “Ecological Interventions: Addressing the Real World of Children’s Lives in Mental and Developmental Healthcare”.

Dr. Stelios Georgiades with the keynote presentation.

This event is an excellent opportunity to highlight the benefits of having clinicians and researchers in child health and neurodevelopment working together, and learning how to make meaningful differences for children and youth.  We look forward to participating again next year!

High School Health Research Bursary Award Student - 2019

The McMaster Autism Research Team (MacART) has had wonderful experiences with the Hamilton Health Sciences High School Research Bursary Program, where youth join a research team during the summer and have the opportunity to take part in research activities. Our participants for the past 5 years all made wonderful additions to our team, and this year’s student was no exception.

Our placement student in 2019 was Ana Spasojevic, who is entering Grade 12 at Colonel By Secondary School in Ottawa. Interested in neurology and mental health, she hopes to pursue a career in medicine. Ana spent the summer working with Dr. Stelios Georgiades and his research team at the Offord Centre for Child Studies, supporting the Pediatric Autism Research Cohort (PARC) Project, which aims to embed a standardized research protocol into the Ron Joyce Children’s Health Centre ASD Service.

She supported the development of a database, helped prepare study summary reports, engaged in data management tasks, and helped to create a study progress report. Through this placement Ana gained valuable research skills while learning about the state of scientific research in ASD and other neurodevelopmental disorders – and most importantly, she has seen the positive impact of research on families living with autism. We thank her for her contributions to our work this summer!

 

 

Senator Munson’s Visit to McMaster May 21, 2019

May 21st was a memorable day for the McMaster Autism Research Team (MacART) and for McMaster University. We were honoured to co-host a visit from Senator Jim Munson, and his wife Ginette, to McMaster in partnership with the Socrates Project. Their visit began with presentations by members of MacART to inform the Senator and his wife about some of the ground-breaking and collaborative autism-related research happening at McMaster.

In the afternoon, various leaders, stakeholders, family members and self-advocates – numbering over 120 – from the autism community across southern Ontario gathered in the Great Hall of the McMaster University Faculty Club for a Socrates Project event with Senator Munson. MacART trainees Dr. Vivian Lee, Dr. Mackenzie Salt, and Dr. Stephen Gentles participated in a conversation with the Senator around why Canada needs a national autism strategy, what a strategy might include, and the feasibility of such a plan. This was followed by questions from the highly engaged audience.

Senator Munson is notable for his advocacy for autism and developmental disabilities. It was his leadership in Parliament that led to the adoption of An Act respecting World Autism Awareness Day and, later, the 2007 Senate Report, Pay Now or Pay Later: Autism Families in Crisis. Soon after, the Canadian Autism Spectrum Disorder Alliance (CASDA) was formed, which has worked to advance the idea and outlines for a National Autism Strategy, the topic for the afternoon’s conversation. This past spring CASDA released its Blueprint for a National ASD Strategy, which provides a path for concrete federal action—relevant for all political parties given the federal election this fall. As the Senator said, “Autism is not just a provincial responsibility or a federal responsibility. It is a Canadian responsibility. We have to give hope to everybody. We have to give a place for everybody to participate.”

Senator Munson and MacART trainees speaking at the Socrates Project event.

Senator Munson and MacART trainees speaking at the Socrates Project event.

MacART at the International Society for Autism Research (INSAR) Annual Meeting - 2019

The International Society for Autism Research (INSAR) recently gathered in Montreal, Quebec, Canada for the annual 2019 meeting. From May 1st – 4th, scientists, researchers, clinicians, policy-makers, and self-advocates came together to share and learn about the latest scientific developments in autism research. This event – which included over 1,800 posters, oral presentations, and panels – exemplifies the international importance of advancement in autism care.

MacART was once again well represented at the 18th annual INSAR meeting, giving members an excellent opportunity to share our research findings, exchange ideas and collaborate with other members of the global autism community. This year MacART members contributed to 29 posters, 3 oral presentations, and 2 panel sessions, building on our representation from last year.

The following presentations include those with MacART members as contributors (click on the titles to view the abstracts):

Poster Presentations:

 

Oral Presentations:

 

Panel Presentations:

 

The McMaster Autism Team arriving at INSAR 2019 (pictured, left to right, are Amanda Assi, Anna Kata, Mohammad Zubairi, Vivian Lee, Peter Tait, Irene Drmic, Eric Duku, Ronit Mesterman, Stephen Gentles, Caroline Roncadin, Stelios Georgiades, and Irene O'Connor:

 

Stephen Gentles and Trudy Goold in front of Steve's poster, "Longitudinal Trajectory Studies of Children with Autism Spectrum Disorder: A Scoping Review":

 

Anna Kata representing the PARC Study team's poster, "Pediatric Autism Research Cohort (PARC): Towards a Learning Autism System":

 

Briano Di Rezze in front of his poster, "Content Validity Testing of the Autism Classification System of Functioning: Social Communication (ACSF:SC) with Toddlers and School-Aged Children with Autism":

 

Irene O'Connor representing the Job-Train Program team in front of their poster, "The Journey through Healthcare and Educational Services: Perspectives of Parents of Teens on the Autism Spectrum":

Innovation by Design students envisioning the future of autism care

Last year MacART acted as a project sponsor for the Health Leadership Academy’s Innovation by Design course, where worked with five undergraduate studentsusingdesign thinking methodology to address the lack of services for children with autism. That group created a prototype web portal for parents of children who have been referred for an ASD diagnosis and are waiting for an appointment. We were happy to act as a sponsor for the course again this year, which came with a different and unique framework - imagining problems in the year 2030.

A new group of students - Mia Cai, Timothy Choi, Zeba Khoja, Roham Sanaie, Isobel Sharpe, and Afraah Shirin - were tasked with envisioning the future of autism care, specifically around the transition period from pediatric to adult care.  A child with autism today may be aging out of the pediatric system in 2030 - what would their supports and services look like? 

The group interviewed numerous stakeholders, including a university student with autism, family members of those on the spectrum, a social worker assisting with the transition period, and others. Using design thinking methodology, such as exploring weak signals, insights, and generating future questions, the students developed a 'museum exhibit'  - a newspaper article - that portrays the realities of the current challenges in autism care. They described an inter-minsterial approach, where multiple Ministries took on responsibilities for autism care. Their poster outlines the current problem, how it might look in 2030, and why their chosen solution might work.  Their proposal is a timely one, which happened to coincide with an announcement from the current Ontario Ministries of Education, Health and Long-Term Care, and Children, Community and Social Services of a partnership approach to consultations on the Ontario Autism Program. 

Thank you to the students for their dedication and excitement about this topic - it was very exciting to see the innovative thinking and creative approaches they brought to this problem. Please explore their handout, poster, and final product for more information! 

 

Statement from MacART on World Autism Awareness Day 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.