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Parents perspectives on their child with autism spectrum disorders transition to adulthood

Summary: The purpose of this study is to examine which factors predict parent stress and family quality of life for parents of children with Autism Spectrum Disorder (ASD) when that child is making the transition out of high school. Although some research has shown that this is a stressful transition for parents, little research has been done to examine what factors predict that stress. Specifically, we are interested in examining the predictive power of parent coping strategies, child behaviour, and transition related details in predicting parent stress and family quality of life.

Researcher(s):  Jay Best, Ph.D. student at the University of New Brunswick being supervised by Dr. Barbara D’Entremont.

Who can participate:  If you have a child with Autism, Aspergers, or PDD-NOS (Pervasive Developmental Disorder – not otherwise specified) AND your child is in high school (grades 9-12) in Canada OR your child completed high school in Canada within the last 3 years, we are interested in hearing from you.

What’s Involved: Information that is collected will be kept confidential. Parents’ participation in this study is entirely voluntary and as such, they may withdraw at any point in time. Upon completion of the survey, parents may choose to leave a contact email (to be kept separate from their data) to be entered to win one of five $20.00 VISA gift cards.

Interested in participating:  For more information please contact Jay Best at jay.best@unb.ca or Dr. Barbara D’Entremont at bdentrem@unb.ca. To participate visit: https://survey.psyc.unb.ca/transitionsurvey.aspx

Posted: March 2017


Quality of Life of School-Aged Children with Autism Spectrum Disorder: Factors that Predict Parents’ Perspective.

Summary: The purpose of this study is to examine which factors predict quality of life for school-aged children with Autism Spectrum Disorder (ASD). We are interested in individual and environmental factors which may be related to higher levels of quality of life for these children. Should parents choose to participate they will be directed to an online survey that will ask them demographic details and details related to quality of life, the child’s autism symptoms, behaviours, functional skills, task persistence, parent’s mental well-being, siblings, school setting, friendships, and participation in activities outside of school.

Researcher(s):  Mandy Fulton, Ph.D. candidate at the University of New Brunswick being supervised by Dr. Barbara D’Entremont.

Who can participate:  Parents of a child with ASD between 8-11 years old. 

What’s Involved: The survey should take roughly 30 minutes to complete.

Interested in participating: For more information please contact Mandy Fulton at t533z@unb.ca or Dr. Barbara D’Entremont at bdentrem@unb.ca. To participate visit:   https://survey.psyc.unb.ca/qolconsent.aspx

Posted: March 2017


Exploring risk and protective factors relating to thoughts and attempts to end own life in adults with and without Autism Spectrum Conditions (ASC)

Summary: We are currently looking for volunteers to take part in a research study investigating factors which may increase or protect against the risk of developing thoughts and behaviours of ending one’s own life. This study is part of wider research being carried out at Coventry University considering the experiences of adults with Autism Spectrum Conditions (ASC) who do and do not think or act towards ending their own life.

Researcher(s):  Kathy Cook, PhD candidate, Dr. Sarah Cassidy supervising.

Who can participate:  We are looking for adults, aged between 18 and 60 years of age who do and do not have a diagnosis of an ASC (including Asperger’s Syndrome, Classic Autism, high-functioning autism, Pervasive Development Disorder and others) to help us with our research.

What’s Involved: Taking part in the study will involve answering a range of questions through an online anonymous survey. Questions will ask you about your thoughts and feelings in different situations, (including those on self-harm and ending own life), and the way you experience different sensations. Nearly all questions are multiple choice from a range of options. The survey should last no more than an hour.

Interested in participating:  Further details can be found in the participant information sheet (which can be found through the survey link). If you are happy to take part in the study, please visit the link:  https://coventrypsychology.qualtrics.com/SE/?SID=SV_0TlOpByLSRWz1Yh.
 
If you would like more information please contact Kathy Cook (cookk6@uni.coventry.ac.uk) or Dr. Sarah Cassidy (email: sarah.cassidy@coventry.ac.uk, telephone: +44 (0)2477 657038 ).

Posted: March 2017


Work Experiences of Adults with Autism

Summary: We are interested to know why some adults with autism spectrum disorder get good jobs.
We also want to know why some adults can retain jobs while others are unemployed.
We need YOU to help us understand the experiences of finding and retaining a job.

Researcher(s):  The Faculty of Social Work’s David Nicholas and Theresa Jubenville, doctoral candidate in the Werklund School of Education, University of Calgary.

Who can participate:  Adults diagnosed with autism spectrum disorder. Age 18 – 65.

What’s Involved: Could you come for a 45-minute session to share your experience?  Participants will receive a gift card of $20 for their participation.

Interested in participating:  If you want to learn more about this study please call Rosslynn Zulla at 780-492-8073 or email at rzulla@ualberta.ca.

Posted: March 2017


Study exploring developmental disabilities and experiences with law enforcement/police

Summary: We want to hear about your experiences with the police, your views regarding current police training on developmental disabilities (DDs), and what you think police officers should know about people with DDs. You can participate in this study even if you (OR your dependent/child) have not had any interaction with the police. The goal of this project is to collect information that will be used to create informed training materials for police & law enforcement professionals on how to better handle people with DDs.

Researcher(s): Alisha C. Salerno under the supervision of Dr. Regina Schuller and Dr. Jonathan Weiss

Who can participate: You are eligible to participate in this study if you are 18 years old, and either: (1) have a DD and/or ID (this includes ASD, Autism, Pervasive developmental disorder, and anyone with an intellectual disability) or (2) care for someone with a DD/ID (e.g., parents, caregivers).

What’s Involved: The questionnaire takes approximately 45 minutes to complete, and can be completed either online or in-person. Upon completion of the survey, you will have the opportunity to participate in a raffle for a $50 gift card! Participants who would like to complete the survey in-person will be compensated with 2 TTC tokens. Results of this project, and any training material created from it, will be shared with participants.

Interested in participating: please contact Alisha at salern0a@yorku.ca (please note: the 0 in my e-mail is a zero). If you would like to participate online, please click on the following link: https://yorkufoh.ca1.qualtrics.com/SE/?SID=SV_73Nq90uiwlVNfbT 

Posted: February 2017


Intranasal Oxytocin for the Treatment of Autism Spectrum Disorders

Summary: To identify the effect of intranasal oxytocin (IN-OXT) versus placebo on social function in adults with ASD. The study aims to determine the safety and tolerability of IN-OXT, its effect on quality of life and anxiety, and whether or not it can improve core symptoms of ASD such as social cognition and responsiveness. We are doing this research because it is currently not known whether or not IN-OXT works for adults with ASD.

Researcher(s): Evdokia Anagnostou, MD

Who can participate: 18-45 years old with ASD, Can tolerate venipuncture, Fluency in English, Able to provide written informed consent or able to provide written informed consent from their surrogate decision maker.

What’s Involved: This is a four-month randomized, double-blind, placebo-controlled trial of intranasal oxytocin for the treatment of adults with ASD who struggle with social functioning. You will be asked to come in to Holland Bloorview for a screening session. At this visit, we will talk with you, complete some behavioural tests and determine if you can safely participate in our research. If you meet eligibility criteria, you will be given a daily dose of oxytocin for the duration of the study. You will visit Holland Bloorview every two weeks for three months so that our research physicians can monitor your progress. There will also be one final follow up visit one month after you complete the study to ensure safety of oxytocin discontinuation and to look for possible maintenance of any favourable effects of oxytocin.

Interested in participating: Contact Rianne Hastie Adams, Study Coordinator, Holland Bloorview Kids Rehabilitation Hospital, Phone: 416-425-6220 x 6515, rhastieadams@hollandbloorview.ca

Posted: December 2016


Adult Interoceptive Sensory Profile: Scale design and development

This project is being undertaken as part of a PhD Project by Lisa Fiene from the University of Southern Queensland. The results of the study will be used to write up a final thesis and any linked publications, but you will not be identified within the thesis or any linked publications. Also, non-identifiable data could be used in future research projects.

The purpose of this project is to examine how the interoceptive sense is felt and sensed by adults with and without Autism Spectrum Disorder (ASD). The interoceptive sense includes the feelings of thirst, hunger, satiety, heartbeat perception, pain, temperature and affective touch (slow gentle stroking on the skin).

The research team requests your assistance, and your contribution will also contribute towards the development and design of an Adult Interoceptive Sensory Profile self-report questionnaire.

Your participation will involve completion of a questionnaire that will take approximately 30-35 minutes of your time. Access to this online survey is via the link provided below on this website. You will be asked to indicate on a scale of 1 to 7 questions relating to how you sense hunger, thirst and other body processes. You will also be asked questions relating to emotions, as well as questions relating to basic personality traits. Demographic questions, such as age, gender, level of education etc. will also be asked.

For more information, contact Lisa Fiene at lisa.fiene@usq.edu.au

Posted: November 2016


The ASD restricted and repetitive behaviours survey research

While central to the diagnosis of Autism Spectrum Disorder (ASD) restrictive and repetitive behaviours often change over time and increase and decrease in intensity. We are not clear, however why this happens, typical patterns, and we definitely have no structured way of predicting when someone will get locked into these behaviours.

This survey forms part of the process of developing this knowledge. The survey is for parents and or guardians of people with ASD engaged in some form of primary or secondary schooling (in the approximate age range of 6-18 years). This includes parents and guardians of people with the diagnosis of ASD, Asperger’s Disorder, Autistic Disorder or Pervasive Developmental Disorder not otherwise specified (PDDnos). We understand the time and energy required to parent a person with ASD and very much appreciate the time taken to complete this survey. The survey will take approximately 25 minutes to complete. Answers can be saved and the survey completed at a later time if needed. The survey can be taken on the computer or mobile devices like smart phones or tablets.

This research is conducted by Professor Andrew Cashin of Southern Cross University, Australia. The research has been approved by the Southern Cross University Human Research Ethics Committee (approval ECN-16-249). For any concerns related to the ethical conduct of this research please contact the chair of the human research ethics committee Southern Cross University ethics.lismore@scu.edu.au. For any questions related to the survey please contact Andrew on andrew.cashin@scu.edu.au Completion of the survey will be considered consent. Participants can withdraw at any time by not submitting the survey. As this is an anonymous survey withdrawal of the data will not be possible after submission. The findings will form the basis of journal publications, conference presentations and future research plans. All published findings will not be identifiable to any single participant.

To take the survey visit http://tiny.cc/ASD_survey

Posted: November 2016


Quality of Life in Adults with High Functioning Autism/Asperger’s Syndrome

The purpose of this study is to investigate quality of life in adults on the autism spectrum. Quality of life examines the person’s physical health, psychological state, social relationships, beliefs and level of independence. In this study we will study how health related issues, psychological conditions,social functioning and social support affect quality of life in adults with high functioning autism and Asperger syndrome.

If you wish to participate in this study, you are asked to complete the questionnaire online.  You  will not be identified in any publication. Your identity will be kept completely confidential, and will not be shared with anyone else.

If you have any questions about this research, contact Amy Barrett, Telephone: 0863192872, Email: a.barrett5@nuigalway.ie.

Supervisor: Dr. Geraldine Leader, Irish Centre for Autism and Neurodevelopmental Research (ICAN), School of Psychology, National University of Ireland, Galway.  Email: geraldine.leader@nuigalway.ie

Posted: August 2016


A Survey to Develop a Website Page for Adults with ASD: Version for Adults with ASD

Are you 17 or older and living with ASD? If you are, we would like you to complete this survey. Your participation is voluntary and optional. We are looking to add useful information for youth and adults living with ASD onto ConnectABILITY.ca (a website). Your answers will help us decide what to include on the ASD website page on ConnectABILITY.ca.

We do not ask for any information that identifies who you are.

This survey will take approximately 20-25 minutes to complete. Your responses will be both anonymous and valuable. You will have the option of entering your name in a draw for a VISA card of $150 value at the end of the survey. Your name and contact information will NOT be linked to your survey responses.

Share your thoughts by completing the survey that applies to you:

Posted: August 2016


Increasing Participation in Special Olympics: Are Pediatricians the Missing Link?

Why is this research being done? Past research has shown that physical activity programs including Special Olympics have a variety of health benefits for people with intellectual disabilities. Many people are eligible for Special Olympics but are not currently involved with the program. We want to find out why some people don’t participate and how paediatricians can help get more people involved in Special Olympics.

Who can participate? Parents/Caregivers of individuals aged 2-21 who have an intellectual disability.

What is involved? An anonymous 5-10 minute online survey.

How do I participate? Follow this link to complete the survey https://surveys.dal.ca/opinio/s?s=33552

Participants will be entered into a draw for one of six $100 gift cards!

If you have any questions contact Rebecca at rebecca.haworth@dal.ca

Posted: July 2016


Social and Emotional Behaviour in Children and Adolescents with ASD

Does your child struggle to regulate their emotions during times of anxiety or distress? Researchers at Queen’s University are interested in understanding how children and adolescents with ASD regulate their emotions, and how these regulatory abilities are associated with different ASD symptoms. Your participation in this study involves completing ONLINE questionnaires FROM HOME, and will allow future researchers to understand and improve emotion regulation abilities in youth with ASD.

Who can participate?  All parents and primary caregivers of children between ages 5 and 17 on the autism spectrum.  All adolescents (ages 12 to 17) who are able to independently respond to two online questionnaires with a total of 60 questions.

How to participate:  Primary caregivers are invited to complete an ONLINE survey package of three short questionnaires, requiring approximately 15 to 20 minutes to complete. Adolescents with sufficient reading abilities are then invited to complete two short questionnaires, requiring approximately 10 to 15 minutes to complete. All questionnaires are included within a single online package, accessible at http://queensu.fluidsurveys.com/s/er-asd/

Any questions can be directed to Dr. Elizabeth Kelley at asd@queensu.ca.

Posted: July 2016


Innovative technology for caregivers

Researchers from the University of British Columbia are looking for volunteers to participate in a study examining caregiver burden and caregiver technologies.

We are looking for individuals who:

  • are 19 years of age or older;
  • are family caregivers for older adults OR, older adults who are family caregivers;
  • can read, write and speak in English or French.

If you choose to take part and are eligible to participate you will be asked to complete 2 data collection sessions (Session 1 will be 1.5 – 2 hours and Session 2 will be 1 hour).  During the first session, you will answer questions about your caregiver background.  During both sessions, one of our research assistants will ask you to take part in an interview about your perception of different caregiver activities and technologies.

Scheduling based on availability.  Assessments will take place either:

  • in person at GF Strong or Blusson Spinal Cord Centre, or any place that is convenient for you, or
  • over the phone

For more information, please contact Leena Chau at 604-714-4108 or email at leena.chau@ubc.ca

Posted: June 2016


Melodic memory and Absolute Pitch ability in children with ASD

Typically developing children and children with autism spectrum disorder between 8-12 years of age can participate! Children will play two computer music games separated by a period of a week. All children will complete a series of puzzles, patterning and verbal activities. The total time to complete the study is approximately 2 hours and 30 minutes. We will offer children a gift card for their participation in the study.

For further information please contact Dr. Sandy Stanutz, Miriam Post-Doctorate Fellow, Educational and Counselling Psychology 613-890-1529, sandy.stanutz@mail.mcgill.ca

This study is a project under the supervision of Dr, Jacob Burack, Educational and Counselling Psychology, Director, MYST lab 514-398-8273, Co-Researcher: Dr. Sandy Stanutz, Co-Researcher: Dr. Eve-Marie Quintin

Posted: May 2016


Friendships, Relationships, Sexuality, and Autism Spectrum Disorder

Research suggests that individuals with ASD have difficulty developing and maintaining relationships. We we want to understand this, so that we can find ways to help. Also, we know that girls and women with ASD may experience more bad sexual experiences, and we want to know why.

How this study will help:  We hope to find ways to:

  • Help people with ASD develop better relationships
  • Help women with ASD avoid some of the things that may have happened to them in the future.

Researchers at Deakin University are conducting a study focused on how people initiate, build, and maintain social and romantic relationships.  We aim to better understand how this differs for individuals with Autism or Asperger’s.

WHO can participate? Anyone aged 16 years and over.

WHAT does it involve? Completing an anonymous online questionnaire (25-35 minutes).

Any questions:  giha@deakin.edu.au or lpecora@deakin.edu.au

To participate please go to:  http://psych.hosted-sites.deakin.edu.au/sbs

Posted: May 2016


Are you diagnosed with Autism Spectrum Disorder?

If so, you can help us understand the role of brain inflammation in Autism Spectrum Disorder (ASD).

In this study, you will undergo:

  • Either one or two Positron Emission Tomography (PET) scans
  • One Magnetic Resonance Imaging (MRI) scan
  • Additional assessments of ASD symptoms, cognitive abilities, and general well-being

To participate in this study, you must:

  • Be 18-40 years of age
  • Have a diagnosis of Autism Spectrum Disorder
  • Be verbal and fluent in English
  • Not have abused alcohol or drugs in the past 6 months
  • Not have a major, unstable medical or neurological illness (e.g., epilepsy, seizure disorder, known heart ailments)
  • Not be taking anti-inflammatory and/or anticoagulation medication
  • Not be pregnant or breastfeeding

To find out more or to refer someone, please contact: Avideh Gharehgazlou at avideh.gharehgazlou@camh.ca or at (416) 535-8501 x 36726.

For more information about programs and services at CAMH please visit http://www.camh.ca or call 416-535-8501 (or 1-800-436-6273).  All queries are confidential.

Posted: April 2016


Secret Agent Society: Operation Regulation

Do you have a child between 8-12 years of age with Asperger’s or ASD?

What is the research about?  This study is about a new program aimed at helping youth with high-functioning autism spectrum disorders cope with their emotions and handle the day-to-day stressors in their lives using a variety of activities and tools, like an emotion focused computer game, cue cards, in session games, and parent and teacher handouts.

What does participation involve?  Participating involves weekly 1-hour visits to York University where you and your child will meet with a trained therapist for one-on-one therapy. Your child will get to do an assortment of activities and play games (e.g., computer games, problem solving tasks, and role playing). The activities are aimed to help build emotion regulation skills.

You and your child will also participate in research to evaluate the effectiveness of the program.

There is no cost to the program, except for parking and travel to the university.

For more information, please contact Dr. Jonathan Weiss, Principal Investigator on the study, at jonweiss@yorku.ca, or Carly Albaum, Lab Coordinator, at calbaum@yorku.ca.

You can also visit our website at: http://ddmh.lab.yorku.ca/secret-agents-society-operation-regulation/

Limited space is available, so families will be contacted on a first come, first serve basis.

Posted: March 2016


Does your child with Autism Spectrum Disorder have eating difficulties?

  • Is your child between the ages of 3 – 18 years?
  • We are also seeking children who have no feeding difficulties

The study will look at  feeding problems and other issues of which your child may experience. You are being invited to take part as a parent of a child with autism spectrum disorder. If your child does not present with any feeding problems or symptoms, you can still take part.

To participate please go to: http://bit.ly/1QMPCp2

For more information please contact Mairead O’Reilly (NUI Galway Psychology) m.oreilly13@nuigalway.ie

This research is supervised by Dr. Geraldine Leader and Arlene Mannion from the Irish Centre for Autism and Neurodevelopmental Research (ICAN)

Posted: March 2016


An investigation of behaviour problems and Attention-deficit/hyperactivity disorder (AD/HD) symptoms in children and adolescents with autism spectrum disorder (ASD)

Does your child with Autism Spectrum Disorder (ASD) have behaviour problems?

Who can participate in this study?  Parents of children with ASD, who are between the ages of 3 to 17 years. Even if your child does not have any of the problems mentioned, you are still invited to take part

To participatehttp://bit.ly/1RDjoNm

If you have any questions please contact: Emma Dooley at e.dooley6@nuigalway.ie.

Researchers: Emma Dooley (Student, School of Psychology, National University of Ireland, Galway), Supervised by Dr. Geraldine Leader (Irish Centre for Autism and Neurodevelopmental Research (ICAN), School of Psychology, National University of Ireland, Galway)

Posted: March 2016