Research Participation Opportunities

Family Goals for Achieving Lifelong Self-Care (Family GOALS)

Researcher

Valencia Steele

Institution

Columbia University

Who can participate

Families of children with multiple special abilities on the Autism Spectrum

Location

Remotely – phone, video conference, internet, etc.

Description

Welcome! My name is Valencia Steele, and I am an occupational therapist who works alongside of families and their children with multiple, special abilities. I am also a doctoral student of the PP- OTD Program at Columbia University. As part of Columbia’s doctoral program, I have developed a program that focuses on supporting the self-care and wellness of families who are raising a child or children on the Autism Spectrum. I am currently in the process of pilot testing this program and seeking the participation of families with children on the Autism Spectrum.

This study involves being a part of the Community of Practice (CoP) or community program, Family Goals for Achieving Lifelong Self Care (Family GOALS), which aims to help families with children on the Autism Spectrum improve their self-care. This program is specially tailored to meet families where they are at in their self-care from defining the self-care activities that are meaningful to them to planning how they will do their self-care. Furthermore, Family GOALS supports families in sharing their self-care experiences, growing together through family-led discussions of resources or strategies that they used from week-to-week, and becoming empowered on their self-care journeys with the support of other families and professionals, e.g., occupational therapists, through a community effort. This program hopes to positively impact families’ self-care journeys as caregivers and individuals who are a valued part of this community.

For families who may be interested in this program, I am available to you and families for any other additional information at vs2761@cumc.columbia.edu.

Contact

Valencia Steele, AFSstudy@upmc.edu.

Deadline

January 29, 2023

Exploring the Mental Health & Quality of life of Latinx Young Adults with Autism

Researcher

Marisol Marroquin

Institution

Arizona State University

Who can participate

Latinx/o/a/es Young Adults (age 18-29) with Autism.

Location

Remotely – https://tinyurl.com/LatinxAutism

Description

Do you identify as Latinx/Latina/Latino/Latine/Hispanic? Do you have autism traits? Are you between the ages of 18 -29 years of age? And do you live in the United States? If you answered “yes” to all these questions, you are invited to participate in this research study! You will be asked to participate in a brief survey to assure you qualify for the study and then be contacted by me to schedule an interview. Participation is voluntary. Compensation for the interview will include a $35 gift card.

Contact

For more information or questions, feel free to contact me Marisol Marroquín, through email jmmarroq@asu.edu or take the survey directly through the link indicated.

Deadline

February 15, 2023

How Do YOU Flow?

Researcher

Keely Lundy

Institution

University of Utah

Who can participate

Youth: Lives in the USA; is 17 years of age or younger; have an autism diagnosis with no co-occurring intellectual or motor impairments; experiences regular periods (for at least one year but no more than 4 years); and can read or has access to technology to read English written content.

Location

Remotely – phone, video conference, internet, etc.

Description

We are seeking young autistic menstruators and their caregivers to participate in a study titled ‘Assessing Menstrual Product Preferences of Young Autistic Menstruators.’ The purpose of this research is to determine the impact of various product features on a caregiver’s decision when purchasing menstrual hygiene materials for their autistic child and which menstrual products are most preferred by young autistic menstruators. The research’s results intend to make periods less anxiety-provoking for autistic youth and their caregivers; it may also provide helpful information to menstrual product companies to improve their products and offer better support to all menstruators. If interested and meet the above criteria, please fill out this form: https://forms.gle/XPgbHn2sfPhhb1pH9.

Contact

Contact Keely Lundy, Keely.Lundy@utah.edu.

Deadline

March 31, 2023

Parent Perspectives On Conversations About Autism With Autistic Children

Researcher

Heather Kirkorian, Ph.D.

Sigan Hartley, Ph.D.

Jennica Li

Institution

University of Wisconsin- Madison

Who can participate

Parents (18+) of autistic children ages 4-8

Location

Remotely – https://uwmadison.co1.qualtrics.com/jfe/form/SV_br15pvL1DcUfQ6G

Description

We are inviting parents who are at least 18 years old with an autistic child between 4-8 years old to share their parenting experiences and opinions!

Participation involves completing an online survey and is expected to last 30 minutes. Participants will receive a $10 e-gift card for completing the survey.

If you are interested in participating, go to https://bit.ly/3Rqeeb0 to see if you are eligible for this study.

If would like to learn more about the study, please email jennica.li@wisc.edu.

This project is being conducted by Jennica Li, a graduate student in the Human Development and Family Studies department within the School of Human Ecology, University of Wisconsin – Madison. The Principal Investigator of this project is Dr. Heather Kirkorian.

Thank you!

Contact

Jennica Li, jennica.li@wisc.edu

Deadline

April 1, 2023

Strategies Managers Use to Integrate Autistic Employees into a Diverse Workforce

Researcher

Eloise Chambers

Institution

Walden University

Who can participate

Managers from Southern California companies versed in the companies hiring, training, and integrating strategies for persons with ASD are the targeted participants.

Location

Remotely/Southern California

Description

Interview study seeks recruiting, hiring, or training managers for organizations/companies who hire persons diagnosed with autism spectrum disorder.

There is a study being conducted to discuss the methods used to actively recruit, hire, and train employees on the autism spectrum with the purpose of integrating them into the workforce with employees not on the spectrum.

The study:
1) One 30 – 60-minute phone or zoom interview that will be audio recorded
2) There is no compensation offered for participating in the study
3) The published study will use pseudonyms for each participant, no actual names will be used in the study
Volunteers must meet the listed requirements:
1) 18 years old or older
2) Managers of an organization that hire both persons with and without ASD
3) Managers that recruit, hire, and train employees with ASD
4) Managers that have direct knowledge and experience of the organization’s methods for recruiting, hiring, and training employees with ASD to integrate with the workforce
This interview is part of the doctoral study for Eloise Chambers, a DBA student at Walden University. Interviews will take place during the months of January to May 2023.

Contact

To confidentially volunteer, contact the researcher Eloise Chambers 931-338-9160.

Deadline

May 31, 2023

Dysfunction of Sensory Inhibition in Autism

Researcher

Kaala Harrilal

Institution

Kennedy Krieger Institute

Who can participate

Children with or without Autism, ages 6-12

Location

Baltimore, MD

Description

We are recruiting children to participate in an MRI research study to learn if there are differences between the brain’s structure and its function in children with and without Autism Spectrum Disorder (ASD).

Who: Girls and boys with or with ASD

What: Eligibility screening via parent phone interview, 2 days of computer games, paper & pencil tasks, and a Magnetic Resonance Imaging (MRI) scan of the brain.

Free IQ testing and report, and a picture of their brain!

Where: Kennedy Krieger Institute, Baltimore, MD

Benefit: There is no significant risk or direct medical benefit for participating in this study.

Compensation: $50 per day (can earn up to $100)

Contact

Natalie Alessi: CNIR@kennedykrieger.org

Deadline

June 1, 2023

Autistic Mother & Non-Autistic Daughter Relationships During Adolescence

Researcher

Natalie Libster, Connie Kasari, Robin Harwood, Karen Meacham

Institution

University of California, Los Angeles

Who can participate

Autistic mothers (formal or self-diagnosis) and their non-autistic daughters (no formal or self-diagnosis) between the ages of 13 and 19

Location

Los Angeles, CA

Description

Researchers at the University of California, Los Angeles are conducting a study exploring how autistic mothers and their non-autistic adolescent daughters describe strengths, challenges, and communication in their parent-child relationships. Co-investigators of this study, who are both autistic mothers, helped develop the study topic and protocol. The research team will collaboratively decide how to present the research findings to prioritize the goals of the autistic community.

This study may be a good fit for you and your daughter if:

• You have a formal or self-diagnosis of Autism Spectrum Disorder (ASD)
• Your daughter is between the ages of 13 and 19 and does not have a formal or self-diagnosis of ASD
• You and your daughter would like to share your perspectives of your mother-daughter relationship

What does participation involve?

• You will each participate in a one-on- one interview (up to 90 minutes)
• You will both have the option to conduct the interview in-person, over Zoom, or over a text-based application
• You will each receive a $50 Amazon gift card to thank you for your time

Contact

Natalie Libster, NLibster@mednet.ucla.edu

Deadline

June 1, 2023

Maternal Risk Factors for Autism Spectrum Disorders: A Case-Control Approach

Researcher

Michael Haniff

Institution

Walden University

Who can participate

Mothers of autistic children, ages 3-12

Location

www.autismrisksurvey.com

Description

New research suggests that about 1 in 8 children may be diagnosed with an autism spectrum disorder (ASD) in the United States. This could be due to several reasons which remain unknown. This study invites mothers who have given birth to children in the United States to share their experiences with diet and supplementation during pregnancy.

Findings from this study can be used to help identify risk factors for ASD risk.

About the study:

One 15–20-minute survey for each child you’ve given birth to
To protect your privacy, the published study would not use any identifying information

Volunteers must meet these requirements:

• Mothers 18 years or older with a child aged 3-12 years who has an official ASD diagnosis from a clinician
• Mothers 18 years or older of children aged 3-12 years who do not have an ASD diagnosis so comparisons can be made between groups

This survey is part of the doctoral study for Michael M. Haniff, a Ph.D. student at Walden University.

Study Purpose:

The purpose of this study is to understand the role of a mother’s diet, social standing, and supplementation with folate or folic acid may have on her child’s future development of autism. Comparisons will be made between mothers of children who have a child with an official ASD diagnosis from a clinician to mothers of children without an ASD diagnosis.

Procedures:

This study will involve you completing the following steps:

• An online survey that will take approximately 20 minutes

Here are some sample questions:

• How many people are currently living in your household, including yourself?
• Do you drink caffeinated beverages daily (such as coffee, tea, colas)?
• Did you use any folate/folic acid supplements during pregnancy?
• What percentage of your diet consisted of meat or meat products?
• Was your pregnancy planned?
• Does your child have a confirmed ASD diagnosis by a physician?

Contact

Michael Haniff: michael.haniff@waldenu.edu

Deadline

June 15, 2023

Sibling-implemented Video Prompting for Children and Youth with Autism

Researcher

Veronica Kang, Gulnoza Yakubova, and Elnaz Safarha

Institution

University of Maryland, College Park

Who can participate

Families with 3- to 17-year-old children or youth with autism and their sibling, who is either (a) 5-12 years old and older than the autistic child/youth; OR, (b) 13-17 years old and older or younger than the autistic child/youth.

Location

Remote (Zoom and Online Survey).

Description

Researchers at the University of Maryland at College Park are looking for 3- to 17-year-old children or youth with autism and their sibling, who is either (a) 5-12 years old and older than the autistic child/youth; OR (b) 13-17 years old and older or younger than the autistic child/youth, to participate in a sibling-collaborative video-based learning support for everyday skills.

The research study will take place via Zoom for 3 months. Sessions can be scheduled 2-3 times/week following the order below.
• 5-minute initial questionnaire
• 5-10 minutes observation of the child/youth engaging in the everyday skills for 1-2 weeks
• 20-minute training for sibling to use video-based learning for 2-3 weeks
• 20-minute session for review, observation, and feedback for child/youth and sibling for 3-4 weeks
• 5-minute observation of the child/youth engaging in the everyday skills for 1-3 times after the training.
• 5-minute survey for caregiver & 10-minute Zoom session with child/youth and sibling for feedback

All sessions will be video-recorded, and permission to video record is required for participation. Families will receive a $25 Amazon gift card after completing all parts of the research.

If you meet the following criteria and are interested to learn more about the study, please contact Veronica Kang at vkang@umd.edu.

● You are a caregiver of an autistic child/youth of ages 3 to 17 years who can listen to or understand English appropriate for children or youth (age 3-17).
● You are also a caregiver of an older sibling to the autistic child, who ages between 5 to 17 years old AND older than the child with autism. This sibling should have age-appropriate language, be interested in playing with their brother/sister following 2-step directions and have used a tablet or mobile device to watch videos.
● You are 18 years or older and a legal guardian or caregiver of both autistic child/youth and the sibling.
● You are available to set up Zoom for each research session 2-3 times/week for 3 months and to participate in a role-play activity for 5 minutes with the sibling 2-3 times/week for 2-4 weeks during the training phase.

Contact

If you have met prior criteria and are interested to learn more about the study, please contact Veronica Kang at vkang@umd.edu.

Deadline

December 30, 2023

Exploring Positive and Negative Dimensions in ASD (EXPAND)

Researcher

Jennifer Foss-Feig & Carla Mazefsky

Institution

University of Pittsburgh REAACT Center

Who can participate

Families with autistic children ages 3-11.

Location

Icahn School of Medicine at Mt. Sinai and University of Pittsburgh

Description

​Led by Dr. Jennifer Foss-Feig at Mt. Sinai, Dr. Mazefsky and her colleagues will develop and validate an observer-report measure of positive and negative features of autism. This assessment study is designed to create a measure of autism symptoms for parents of children ages 3-11.

The overall objective of this proposal is to use gold-standard procedures to develop and validate a new measure to quantify variability within autism along novel and biological dimensions that can concretely be targeted for intervention and measurably show change.

EXPAND is actively seeking families with children ages 3-11. To find out more and to see if you qualify, please contact autismrecruiter@upmc.edu or 1-866-647-3436.

Contact

If you have any questions or are interested, please email autismrecruiter@upmc.edu.

Deadline

December 31, 2023

Supporting nonverbal communication priorities for adults on the autism spectrum

Researcher

Ashley de Marchena

Institution

A. J. Drexel Autism Institute

Who can participate

Professionally diagnosed or self-diagnosed Autistic adults (18 or older) who can comprehend English with or without support.

Location

Remotely – https://nvcstudyinfo.weebly.com/contact-us.html

Description

Greetings! Calling all adults on the autism spectrum! We would like to hear about your experiences with and interest in support with nonverbal communication. We are interested in developing supports to help improve communication experiences for adults on the autism spectrum, but first want to hear from the autistic community about what (if any) supports are wanted or needed.

This survey is open to all adults on the autism spectrum, regardless of age, gender identity, race, ethnicity, sexual orientation or disability status. If you’re interested in participating, you will be asked to complete about 60 minutes of online surveys related to communication, autism traits, and general information about yourself. The surveys should take about an hour to complete. Communication differences will be accommodated.

You will receive a $40 Amazon gift code after you complete the study. To get started, please email us at childstudies@drexel.edu. For more information about the AJ Drexel Autism Institute, please visit our website at https://drexel.edu/autisminstitute/.

Contact

If you have any questions or are interested, please email us communicationstudy@drexel.edu

Deadline

January 31, 2024

Healthcare Experiences of Autistic Young Adults

Researchers

Briana Keller & Jessika Boles

Institution

Vanderbilt University

Who can participate

Autistic young adults, ages 18-26, who live in the US. Medical diagnoses and self-diagnoses are both welcome!

Location

Remotely – https://redcap.link/5xpanars.

Description

Researchers at Vanderbilt University are seeking autistic young adults to participate in a survey about healthcare experiences. You are eligible to participate if you are between 18 and 26 years old, live in the United States, and have a medical diagnosis or self-diagnosis of an autism spectrum disorder.

Contact

If you have any questions, please contact Briana Keller at briana.p.keller@vanderbilt.edu.

Deadline

May 1, 2024

Understanding the Help-Seeking Experiences of Asian American Caregivers of Children with Autism: A Qualitative Study

Researcher

Amani Khalil, M.S. Ed.

Institution

Purdue University

Who can participate

Primary caregivers of a child ( age 3-17) with ASD. Caregivers must be over the age of 18 and 1) identify as Asian or Asian American, 2) speak fluent English, and 3) reside in the United States

Location

Remotely – bit.ly/3quutu3

Description

We are seeking interview participants for the research titled “Understanding the Help-Seeking Experiences of Asian American Caregivers of Children with Autism: A Qualitative Study”

The purpose of this research study is to learn about the healthcare barriers Asian and Asian American caregivers/ parents experience in accessing an autism diagnosis and autism treatment services specially within the U.S. healthcare system. Our results will aim to address how we can create culturally competent autism services and ultimately how we can close the delayed autism diagnosis and intervention services that Asian American children with autism often experience.

If you are a primary Asian American caregiver caring for a child diagnosed with Autism age (3-17) please consider participating in an online interview on your experiences navigating Autism treatment and supports for your child. If selected for an interview you will be compensated with a $25 Amazon gift card upon completion of an online interview.

To qualify for the study, you must:

• Be a primary caregiver of a child diagnosed with Autism ages (3-17)
• Identify as an Asian American
• Be 18 years or older
• Speak fluent English
• Currently reside in the U.S.

If you are interested in the study, please fill out a brief interest and demographic survey below.

https://bit.ly/3quutu3

Contact

If you have any questions, please feel free to reach out to PRFLab@Purdue.edu,

Amani Khalil, M.S. Ed., KhalilA@Purdue.edu, or

Xiang Zhou, xiangzhou@purdue.edu

Deadline

August 11, 2024

Flexible Thinking Study

Researcher

Dr. Erin Kang

Institution

Montclair State University

Who can participate

typically-developing children or children diagnosed or with suspected autism, aged 6-17 years old

Location

Montclair, New Jersey, USA

Description

Researchers at Montclair State University are looking for families with children and adolescents 6-17 years old that are typically developing or have/are suspected to have autism spectrum disorder to participate in an in-person study on how children switch their thinking and attention between tasks. We hope to better understand flexible thinking patterns and how they relate to social and emotional development. Participating families will receive a $50.00 gift card for completing this study.

Contact

Montclair State University Autism and Neurodevelopment Lab at 973-655-3615 or email at erinkanglab@montclair.edu.

Deadline

August 31, 2024