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Besoins des fratries d’adultes et d’enfants présentant un trouble du spectre de l’autisme

L’objectif de cette étude est d’interroger la fratrie d’enfants et d’adultes présentant un trouble du spectre de l’autisme sur leurs besoins face à une situation familiale atypique. Il nous semble important de recueillir le point de vue de la fratrie, ce dernier étant très peu représenté auprès de la communauté scientifique francophone lorsqu’il s’agit de TSA.

Laura Manel, stagiaire psychologue et étudiante en master 2 de Psychologie spécialité “Autisme et autres troubles neuro-développementaux à l’Université Toulouse Jean Jaurès (France).

Les participants doivent présenter un développement “neurotypique” et avoir un frère ou une soeur présentant un trouble du spectre de l’autisme. Ils doivent être francophones et avoir au minimum 10 ans (il n’y a pas d’âge limite).

Un questionnaire concerne les enfants et les adolescents entre 10 et 17 ans. Un autre concerne les adultes à partir de 18 ans. Il s’agit de répondre à l’un d’eux en renseignant sur les caractéristiques familiales, ainsi que sur les besoins perçus en tant que frère ou soeur d’un enfant ou d’un adulte présentant un TSA.

If you would like to participate, please contact Laura Manel at manel.laura@gmail.com. The deadline to participate is June 2018.

Posted: April 2018

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:

  • Age 17 or older and living with ASD: http://svy.mk/2aj5Vhm
  • A caregiver of someone age 17+ living with ASD: http://svy.mk/2auGdHw
  • A professional that works with adults living with ASD: http://svy.mk/2a2CLif

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

Family Quality of Life for Parents of Children with Autism

Share your opinions with researchers at the University of Windsor by completing an online survey about family quality of life. It takes about half an hour to complete and you will get a $5 e-gift card as an incentive.

Parents or caregivers of children with autism aged 4 to 11 are eligible to participate.  Participants will also have the option to participate in a 20-minute phone interview.

If you are interested in participating, e-mail Jenna at jonesjb@uwindsor.ca for the study link.

(Supervised by Dr. Marcia Gragg, PhD, C. Psych., University of Windsor)

Posted: June 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 Counseling 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 participate:  http://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

Seeking parent input into experiences of support:  What you need, when you need it, and how it helps

Who can participate in this study?  Any parent of a school aged child with a diagnosis of an Autism Spectrum Disorder, living in Canada. The person with ASD needs to currently be between 5 and 18 years of age. Only parents are needed to participate in this research.

What does participation involve?  Interested parents will complete an online questionnaire (a paper copy is also available). This questionnaire takes about 30 minutes to complete. Parents will also be invited to complete shorter follow0up questionnaires 6 and 12 months later. Participating parents will be entered in a raffle for $50 gift certificates, as thanks.

To participatehttps://yorkupsych.co1.qualtrics.com/SE/?SID=SV_9mBMYXuqLsnW7OZ

If you have any questions or would prefer a paper copy of the survey, please contact: srobinso@yorku.ca or 416-736-2100 ext. 44032. Our lab website is: www.ddmh.lab.yorku.ca.

This research is supported by the Social Sciences and Humanities Research Council.

Posted: February 2016

Autism Treatment Effectiveness Survey

You are invited to evaluate the effectiveness of treatments for autism, including medications, nutritional supplements, diets, therapies, and education.

Our goal is to learn which treatments are most effective for different symptoms (language, anxiety, sleep, GI, etc.).   Survey results will be posted on our website for families and clinicians, and published in a scientific journal.

Your participation is voluntary. The survey will take 15-45 minutes, depending on the number of treatments you wish to rate.

Researcher: Prof. James B. Adams, Ph.D., Director, ASU Autism/Asperger’s Research Program

For more information, go to http://autism.asu.edu

Posted: February 2016

A randomized placebo-controlled trial of tideglusib vs. placebo in the treatment of adolescents with ASD

Summary: Currently conducting clinical trials to investigate whether a drug called tideglusib helps to improve symptoms of Autism Spectrum Disorder, specifically social engagement, social function, and repetitive behaviours.

Researcher(s): Evdokia Anagnostou, MD

Participate in this study: Have you been diagnosed with an autism spectrum disorder?  Do you have social difficulties and/or repetitive behaviours?  You may be eligible to participate in a clinical trial of a medication called tideglusib.

Who can participate: Adolescents between 12-17 years of age with a diagnosis of an autism spectrum disorder (ASD, autism, PDD-NOS, or Asperger’s syndrome)

What’s Involved: The trial will last a total of 16 weeks (4 months) and involves taking either tideglusib or a placebo dissolve in water every morning for 12 weeks, with a follow-up visit around 4 weeks later.  You and your child will first be asked to come in for a screening session; through talking with you and completing some assessments, we will determine if your child meets eligibility criteria.

Visits will occur at Holland Bloorview and will take place every two weeks while your child is taking the drug or placebo.  This study also has an optional continuation part, which means that if you were given placebo, you will be able to take tideglusib at the end of the four months.  The same tests and procedures will be followed that were followed during the main study.

Participants will receive a small token of appreciation in the form of a $20.00 gift card to thank them for their time.

Deadline: The study began in July 2015 and will last 1-2 years.

Interested in participating: If you are interested in participating in this study or have additional questions, please contact Naomi Peleg at 416-425-6220 ex 3456 or npeleg@hollandbloorview.ca with your interest, and they will get back to you shortly.  Contacting us does not obligate you or your child to participate in the study.

Posted: February 2016

Changes in Autism?

The purpose of this study is to find out about the experiences of children and their families living with autism. We conducted a similar survey 10 years ago, and we are interested in possible changes that might exist with respect to methods of diagnosis, as well as differences in assessment, treatment and type of educational services available for school-aged children on the autism spectrum. You will be asked to respond to questions about your child, including their behavioural characteristics, the diagnosis they have received, services available, treatments received and educational experiences.

Eligibility Requirements: Participants must be a caregiver with a child on the autism spectrum.

Duration and Locale: The survey will be up and running until approximately March 1st. For your answers to be included, it would be appreciated if the survey could be completed by this date. The survey is online so participants can complete it in a place of their choice, either on their computer, laptop, phone or similar device. The complete questionnaire usually takes about 60 minutes to complete.

Compensation: There is no compensation for taking part in this survey.

Researchers:  The following researchers are involved in this study, and you can contact them if you have any questions about the study:

Participation is entirely voluntary and you will be asked for your consent to be part of the study. To continue, please click on this link which will take you to the online survey:  Link to study for caregivers here.

Posted: January 2016

Positive Mindfulness Programme

Looking for parents of children who have ASD/CP to participate in a free positive mindfulness programme, with the aim of increasing well-being. The programme is all online. You will have access to 1 of the 8 areas of positive psychology every 4 days, all of which you can practice at your own leisure, taking a maximum of 12 minutes a day.

For more information or to participate, please contact Yemi Marshall me at yemi.marshall.13@ucl.ac.uk 

Posted: December 2015

Participants Needed for UNB Walking Study

This year, an Honours student at the Andrew and Marjorie McCain Human Performance Lab is studying walking patterns in children with Autism and Asperger’s Syndrome. Walking is a natural motion that humans often take for granted. Altered walking patterns can lead to fatigue, pain, reduced functionality, and reduced quality of life. Currently, little is known about the walking pattern of children with Autism and the differences when compared to age-matched controls. Autism can be associated with numerous neuromuscular problems including low muscle tone and ligament laxity. The aim of this research is to provide insight on the movement patterns and potential treatments for these children.

The walking study will involve placing small reflective markers on the child’s skin (using double sided tape and velcro), which allows a Vicon motion capture system to track the markers in space while the child moves. We will ask the child to complete numerous walking trials at a comfortable pace. The data collected from the cameras will be used to calculate joint angles and muscle activity.

If your child is aged between 6-16 years, has been diagnosed with Autism or Asperger’s Syndrome and would be interested in participating, we invite you to contact us at (506) 326-0614 or email mmalcolm@unb.ca for further information.

Posted: December 2015

Interior Design – Designing a Centre for Adults with Autism

The survey designed to be filled out by individuals with Autism, their family members, or professionals who work with them. Age level is not a restriction but knowledge/interaction/experience with adults is preferable—at the end of the day children will become adults and any input and participation is appreciated and welcome.

The results of this study will substantiate design decisions which will guide the development of the thesis project during the academic year. The results and answers will be completely anonymous.

Here is the link: http://goo.gl/forms/Ennj2K2JL1

For more information about this survey, please contact:

Emily Kusec-Ashcroft emilykusecashcroft@gmail.com

Posted: November 2015

Intranasal Oxytocin for the Treatment of Children and Adolescents with Autism Spectrum Disorders (ASD) – [Open Recruitment]

Purpose:  This is a study investigating whether Intranasal Oxytocin  (Syntocinon®) helps to improve symptoms of Autism Spectrum Disorder, specifically social functioning  (e.g. learning how to talk to others, making friends) and repetitive behaviours.

Who: 10 years to 17 years of age with an autism spectrum disorder (ASD, autism, PDD-NOS, or Asperger’s syndrome).

What: 24 Week (6 Month) clinical trial intervention study, which involves taking a nasal spray every day for three months, with a follow up visit three months later.

You and your child will first be asked to come in for a screening session; through talking with you and completing some assessments we will determine if your child meets eligibility criteria. If your child meets criteria, then you will then receive either Oxytocin  (Syntocinon®)  or placebo. Visits will take place every two weeks while your child is taking the drug or placebo.

This study also has an optional continuation part, which means that if you were given placebo, you will be able to take Oxytocin (Syntocinon®) at the end of the six months. The same tests and procedures will be followed that were followed during the main study.

Where:  Holland Bloorview Kids Rehabilitation Hospital

Recruitment: For more information about this study and to see if you’re eligible, please contact:
Naomi Peleg 416-425-6220 x 3456, npeleg@hollandbloorview.ca

Posted: October 2015

Health and Medication Use of Children with Autism Spectrum Disorder

The purpose of this study is to better understand the health and medication use of youth with a diagnosis of an autism spectrum disorder (ASD). The study will collect information on issues such as rates of medication use, side-effects, physician care, and parent knowledge and concern regarding medication use.

Information from this study may be used to provide information and support for physicians and parents caring for children with ASD who are currently using medication. In the long-term, information from this study has the potential to improve the health outcomes of youth with ASD.

We are seeking parents of children between the ages of 2 and 19 with a diagnosis of an autism spectrum disorder to participate in an ONLINE SURVEY. The survey should take 15-20 minutes to complete.

If you have any questions about the study please contact Busi Ncube at yorkmedsstudy@gmail.com.

If you would like to participate in the study please follow the link below: https://www.surveymonkey.com/r/2LRD3V9

Posted: September 2015

A Cross Cultural Look at Parenting Beliefs about Child Rearing and Talk to Children with a Developmental Disability

The purpose of this study is to better understand parents’ beliefs about child rearing and how they talk to their children. We are interested in whether there are differences among parents from different cultural groups. It is anticipated that the findings from this research will enhance the cultural competence of therapists engaged in early language intervention with children with a developmental disability.

We are seeking participants who:
•    Are parents and have a child with a developmental disability aged 0 – 6 years
•    were born in Canada or who
•    were born in a country other than Canada, or who
•    speak a language other than English in the home

Participants completing the study will be compensated with a $10.00 electronic gift card. In order to get the gift card, an email address must be provided.

If you have any questions about the research now or later, please contact Aisha Yorke at ayorke@ualberta.ca  /587-589-2600 or Veronica smith at vs2@alberta.ca .

If you agree to participate in the study, please click on the link below:


Posted: July 2015

Adults with HFASD/Asperger’s Syndrome Experiences in Healthcare: An Online Study

This study will gather feedback from adults with HFASD/Asperger’s Syndrome about their experiences in healthcare. This will be asking these adults what they perceive as helpful and challenging in dealing with healthcare professionals, as well as what they wish healthcare professionals better understood about them. Participation is up to three phases and completely online. All three phases can be completed in as little as 2 hours, however if participants prefer to take more time to respond, they will have up to 2 weeks.

Participants completing the second phase of the study will receive a $25 dollar gift card (e.g., iTunes, Tim Horton’s, Cineplex Odeon, and multiple other options).  Participants must be Canadian, age 20 or older, and able to attend at least some of their medical appointments independently.

If you are interested in participating, or would like further information, please contact the primary investigator: Michelle Wright, umwrig28@umanitoba.ca

Posted: June 2015

Would you like to participate in a research study looking at how children and teenagers use the Internet?

We are looking for children and teenagers, who have been diagnosed with an autism spectrum disorder, and children and teenagers who do not have a diagnosis of any kind, to participate in an online study about their online behaviours. We are doing this study so that we can learn about the experiences of children and teenagers with technology (e.g., the Internet and cell phones), bullying, and cyberbullying. With permission from a parent, you will complete an online questionnaire that takes about 30-90 minutes to complete. We also ask that your parents answer some questions. You will be eligible to win a $50 Amazon gift card for participating! To complete the study, please click on the link below (or copy and paste the link into your browser). No login is required.

This research has been approved by the University of Manitoba Psychology Research Ethics Board and is being conducted by Brett Holfeld (PhD) of the Department of Psychology, University of Victoria, and Dr. Janine Montgomery and Dr. Brenda Stoesz of the Social Cognition Laboratory, Department of Psychology, University of Manitoba.

For more information, visit: http://home.cc.umanitoba.ca/~montgom0/index_files/Page1841.htm

Posted: April 2015

Parenting Children with an Autism Spectrum Disorderer

The research project investigates the relationship between child problem behaviour, various parental characteri stics, including wellbeing, in parents of children with an Autism Spectrum Disorder (ASD). This research may help us better understand the relationship between factors such as coping style and parent wellbeing. It is hoped that the findings can contribute to developing intervention and prevention programs aimed at improving the health and well -­‐ being of parents of children with a disability. [poster]

Interested individuals will be invited to complete a questionnaire about yourself, your child with ASD and  your spouse. Participation is completely voluntary. Click here for the more information and to complete the survey.

If you would like to contact the researcher about any aspect of this study, or seek counselling due to experiencing distress as a result of participating in the study, please contact Dr . Gill Terrett, phone +61 (03) 9953 -­‐ 3121, Email: Gill.Terrett@acu.edu.au

Posted: April 2015

Perspectives of the Changing Nature of Asperger’s Syndrome

With the release of the recent Diagnostic Statistical Manual of Mental Disorders (5th ed.), Asperger’s Syndrome (AS) is no longer clinically recognized as a distinct disorder, and has been categorized into a new Autism Spectrum Disorder diagnostic criterion. The aim of this study is to explore the opinions of indviduals with Asperger’s Syndrome on the changing nature of the disorder using thematic analysis. [poster pdf]

Interested individuals with AS will be invited to participate in an approximately 30 minute interview. Participation is completely voluntary.  Click here for the information pamphlet pdf.

Please contact asert@ucalgary.ca.

Posted: March 2015

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