Participate in Research

Get involved with projects and partnerships associated with The Ability Hub

The Ability Hub promotes research about Autism and encourages others who have been impacted personally or professionally to take part.  Changes in policy happen through research and through voices of whom it has impacted.  

The Sinneave Family Foundation operating as The Ability Hub does not endorse or guarantee the exhaustive, complete, accurate or up-to-date nature of the information provided and does not assume any risk for the outcome of the information provided.

Current Research Studies

Autism Spectrum Disorder and Alternative Diets Survey 

Title: Autism Spectrum Disorder and Alternative Diets

Investigators: Dr. Jean-François Lemay, Dr. Scott McLeod

Sponsor: University of Calgary, Calgary, Alberta, Canada

Background

Autism Spectrum Disorder (ASD) is characterized by difficulties in communication and social interaction. The cause of ASD is still unclear. Several causes are currently under investigation. One theory proposed that switching to alternative or modified diets could lead to improvement of ASD features. Literature is revealing increasing numbers of parents of children with ASD are turning to these alternative diets. Through a simple survey, we hope to (a) determine the number of children with Autism Spectrum Disorder (ASD) in Calgary who are using alternative diets and to (b) see if there were any changes in symptoms while using these diets.

This survey will ask you whether or not you have tried any diets (please continue with this survey even though you HAVE NOT tried a diet) for your child with Autism Spectrum Disorder, and if you have tried a diet, whether you noticed any benefits or worsening of symptoms while using these diets.  Only parents of children who received a diagnosis of ASD before the age of 18 years can take this survey.  You have until April 30, 2017, to complete the survey.  Please also note, you can only take the survey once.

What is the purpose of the study?

The main aims of this study include:

  1. To estimate the number of children and adolescents with ASD who have used alternative diets.
  2. To specify any changes noticed in the ASD symptoms of your child after using these diets.
  3. To explore the reasons for starting these diets and the main challenges you encountered while using them.

How can I get involved with this study?

This study will require your participation in an online survey using SurveyMonkey. You should fill out all the questions in the survey and submit it online directly.

With this survey, we are gathering information on your demographics, frequency and types of alternative diets that you have used for your autistic child, reason you chose to use these diets, and whether you noticed any improvement or worsening of ASD symptoms while following these diets. Only parents are allowed to answer this survey. Your child will not take part in any procedure(s), or be asked to use any medication(s), and you will not be asked to do anything else once you complete all the questions on the survey. You can email or call directly if you have any questions or comments (please see contact information on the following page).

What are the risks?

     As this is an online survey, there are no risks involved.

Are there any benefits for my child?

If you agree to participate in this study, there will not be a medical benefit for the autistic child; however, the information obtained from this study might provide us and other researchers with further insight and knowledge of dietary alternatives as well as education/interventions into that topic.

Is my participation mandatory?

      No, your participation in this study is strictly voluntary.

Will we be paid for participating, or do we have to pay for anything?

You will not be paid for participating, nor will you need to pay. All links and forms will be emailed to you directly.

Will my child’s records be kept private?

The email containing the survey link will be sent out by a research coordinator. The email list will be anonymous to the research team. Only the research coordinator will have access to the list linking the names of the participants with their surveys. The investigators will have no knowledge of the identities of the respondents. Data will be collected using the SurveyMonkey database and will be kept confidential and saved on protected servers located in the United States and Luxembourg. The data associated with an account are kept as long as that account exists; however, data can be deleted at any time on request from the participants.

ACCEPTANCE

By answering this survey, you signify your acceptance to the use of the information collected on your autistic child. If you have further questions concerning matters related to this research, please contact:

Dr. Jean-François Lemay, (403) 955-7515

jf.lemay@ahs.ca<mailto:jf.lemay@ahs.ca

If you have any questions concerning your rights as a possible participant in this research, please contact the Chair of the Conjoint Health Research Ethics Board, University of Calgary, at 403-220-7990.

The University of Calgary Conjoint Health Research Ethics Board has approved this research study. If you wish to receive a paper copy of the survey confirming your participation, please contact our administrative assistant, Linda Beatty, at (403) 955-7515 (between 8:30 a.m.-4:45 p.m.

Instructions for completing this survey:

For the purpose of this survey, alternative diet is defined as adhering to a controlled meal plan that involves the purposeful exclusion of a certain type of food, i.e., sugar-free diet, gluten-free diet, where all foods containing a specific ingredient are excluded.

The questions in this survey are related to your child with Autism Spectrum Disorder and all responses will be treated confidentially. Please make sure to complete each question.

Now you are ready to take the survey—click on the link below

(Directions for accessing survey:  place your cursor over top of the link below—if it automatically changes to a pointing hand just left click your mouse and it will take you to the survey.  If no hand appears and you are not directed to the survey, CLICK THE RIGHT SIDE of your mouse and several choices will appear—choose “Open Hyperlink” and you will be taken to the beginning of the survey.)

https://www.surveymonkey.com/r/Q2NGNSP

Thank you for your participation in the survey.

Understanding Social Support for Parents of Individuals with Autism Spectrum Disorders

This study seeks to learn more about the social support received by parents of individuals with Autism Spectrum Disorders (ASD). Parents of individuals with ASD often experience challenges in parenting their children, and it is important to explore the supports that may help reduce feelings of stress. Social support has been shown to help parents, but it is not clear what factors lead to good social support. The aim of this study is to examine parent and family factors that may lead to social support and in turn, how social support influences these factors.

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 follow-up questionnaires 6 and 12 months later. Participating parents will be entered in a raffle for $50 gift certificates, as thanks.

To learn more and to participate, please visit the York University website or contact Suzanne Robinson by telephone (416) 736-2100, ex. 44032, or by email, srobinso@yorku.ca.

Download the Understanding Social Support for Parents of Individuals with ASD Study PDF.

Participants for a Study on Well-Being and Autism are Needed

This research is being conducted through the University of Calgary, Educational Research. We are looking for participants who have characteristics of high functioning autism and are between the ages of 16-35 to share their ideas and experiences relating to well-being through a series of email conversations with a researcher. Email conversations are intended to last for approximately 6-8 weeks and are flexible to meet the schedule of participants. A better understanding of how adults with autism experience well-being may provide valuable insight into educational planning for young people on the spectrum. This research has been approved by the Conjoint Faculties Research Ethics Board at the University of Calgary.

We are seeking participants between 16-35 who have characteristics of high functioning autism, live in Alberta and have access to a computer and Internet.

To participate contact, Janice Beler at (403) 394-4779 or email: jbeler@ucalgary.ca

Research on Using Geometric Patterns of the Face as a Diagnostic Tool for Autism Spectrum Disorder

The University of Calgary is the Canadian participant in an international study using 3D technology to assist in the diagnosis of genetic syndromes. Using a 3D camera and software, images of faces can be analyzed to find consistent patterns unique to people with a particular syndrome.  Presently, we are attempting to identify unique geometric facial patterns indicating placement on the Autism spectrum.   We are asking for participants, those diagnosed with ASD and their family members, to sit for a 3D photograph which involves a single flash. The photograph takes 5-10 minutes. The facial images are made available to the international team but personal information is protected.

To participate please email facebase@ucalgary.ca or call 403 220 3060. 

Research Opportunity: Adults' with HFASD/Asperger's Syndrome Experiences in Healthcare An Online Study

This study will gather feedback from adults diagnosed with High-Functioning Autism Spectrum Disorder/Asperger's Syndrome about their experiences in healthcare. This will include asking these adults what they perceive as helpful and challenging in dealing with healthcare and 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 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, Best Buy, Cineplex Odeon, and multiple other options). Participants must be Canadian or American, age 20 or older, and able to attend at least some of their medical appointments independently.

If you are interested in participating, know someone who may be interested, or would like further information, please contact the primary investigator: Michelle Wright, UMwrig28@umanitoba.ca.  

Research on the Experiences of Fathers of Children with Autism

Dr. Bonnie Lashewicz, Beth Parrott and student researchers from the Department of Community Health Sciences at the University of Calgary want to learn about the experiences of fathers of children with Autism. We are especially interested in hearing from fathers of children with Autism who have immigrated to Canada and/or speak English as a second language, and/or are working extra hours to support their families. Fathers who volunteer for our study will participate in a face to face interview with a researcher at a time and location that works best for the father. The interview will be like a conversation. Fathers are welcome to bring a family member or friend to the interview for support and/or to translate.

The researcher will provide a translator if needed. Fathers will also receive a 50 dollar gift card as a thanks for taking part in the interview.

If you, or someone you know, is interested in our study please contact Kritika Sharma or Amanda Lo for further information at: (403) 700-7510 or kshar@ucalgarv.ca, and (403) 608-3690 or awclo@ucalgary.ca.

Research on Voices of Adults with Developmental Disabilities in Daily Interactions with Family

Dr. Lashewicz and her research team have been focused on "hearing" the voices of adults with developmental disabilities and are concerned that the voices of these adults are under-represented in research or overshadowed by the clearer voices of others.

The purpose of this study is to examine how adults with developmental disabilities communicate with their parents or siblings present. The goal is to understand ways to help adults with developmental disabilities direct their own lives.

Dr. Lashewicz and her research team are looking for adults with developmental disabilities to take part in 3 interviews with one or more of their caregiving parents and/or siblings. Interviews will be conversations about interests, activities and support needs of the adult with a disability and the role of family caregivers.

If you, or someone you know is interested in this project/would like further information, please contact Camille Duque: Project Coordinator at 403 710 2361 orcvduque@ucalgary.ca

Examining Labour Force Participation among Adults with High-Functioning Autism - The Ability Hub

Some adults with autism spectrum disorders (ASD) have difficulty finding and keeping a job.  Finding and sustaining employment for adults with ASD can involve various barriers. 

The purpose of this study is to investigate the work-related experiences of adults with ASD. To understand these experiences, we invite the following to share their experiences in an interview, (1) adults (aged 18-65 years) diagnosed with ASD, (2) caregivers, (3) service providers and (4) employers who have worked with adults with ASD.  This study is estimated to be around 30-45 minutes.  Free parking is included.  A $20 gift card is given as a thank you for participant's time.

Please contact Theresa Jubenville, tjubenville@theabilityhub.org, (403) 210-5000 [ext. 2003] if you are interested.

An exploratory examination of the transition to adulthood in Autism Spectrum Disorder - The Ability Hub

The transition from adolescence to adulthood can have possible difficulties that relate to social, health care, employment and educational needs. A successful transition relies on the availability of appropriate resources, skilled service providers and coordination across services in order to meet the needs of individuals with autism spectrum disorder (ASD). 

We are interested in investigating the transition to adulthood, particularly focusing on the resources and systems that are needed for this transition to be successful.  We are currently seeking participants with autism spectrum disorder from ages 16-19 years to take part in a short interview regarding his/her experiences of transitioning into adulthood.  Free parking is included.  A $25 gift card is given as a thank you for the participant's time.

Please contact Theresa Jubenville at tjubenville@theabilityhub.org or 403-210-5000 (ext. 2003) if you're interested in participating.

Finding out what matters: Self-determination in young adults with Autism Spectrum Disorders - McGill University

The purpose of this study is to better understand the self-determination of young adults (between 18 and 30 years old) with high functioning ASD in Canada. Self-determination is particularly important in adulthood and in helping individuals successfully complete high school, gain employment, postsecondary education, independent living, participate in the community, and experience personal and social relationships. This information is invaluable to our research and will help us understand the lives of young adults with ASD.

Interested individuals with ASD will be asked to complete an anonymous online survey that will take approximately 30 to 45 minutes to complete. As a small token of appreciation, the researcher is offering a $15 gift certificate to participants who complete the full survey.

Download the Finding out what matters: Self-determination in young adults with Autism Spectrum Disorders PDF

Perspectives of the Changing Nature of Asperger's Syndrome -  University of Calgary

The aim of this study is to explore the opinions of individuals with Asperger’s Syndrome on the changing nature of the disorder using thematic analysis. To date, this topic has been ignored in the research literature. Findings from this study will provide professionals a more in depth understanding of the potential implications that may accompany the loss of a clinical diagnosis.

If you have questions or want to participate in this research, please contact: Stephany Huynh, BSc. at (403) 220-2112 or email asert@ucalgary.ca.

Download the Perspectives of the Changing Nature of Asperger's Syndrome Research PDF

Parent Coping Study - University of Windsor

This study seeks to investigate the coping strategies used by parents and the personal growth experiences they have in raising children with ASD.

To request more information or to participate in this study, please contact Mitchell Loepp, B.A., M.A. Candidate at (780) 221-6927, (226) 526-9960 or email loepp@uwindsor.ca

Download the Parent Copying Study PDF