EXPRESS Study: Seeking Caregivers of Minimally-Speaking or Non-speaking Autistic Individuals Ages 8 and Older

This study is for caregivers of minimally-speaking or non-speaking autistic children or adults. Caregivers must understand sufficient English to complete the online study. The person you care for must be aged 8 and older, diagnosed with autism spectrum disorder, and currently be non-speaking or minimally-speaking. This study is fully online. The goal of this study is to understand communication methods used by non-speaking and minimally-speaking individuals on the autism spectrum.

Participation would include:

• Completing an online screener to determine eligibility (5 minutes)
• If eligible, complete the online survey (15 – 20 minutes)

Disclaimer:

• This study is unpaid

Benefits:

• Increasing the knowledge of different communication styles of minimally-speaking and non-speaking autistic individuals from across the nation
• Increase the understanding of the challenges, benefits, and usefulness of different communication methods among this group.

If you are interested in participating or learning more, you can:

• Email us at express_study@drexel.edu (express underscore study at drexel dot edu)
• Text or call us at (215) 571-3291
• Complete the online screener by using this link: https://tinyurl.com/drexel-express-screener

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OPT-In Study: Seeking Caregivers of Young Children Waiting for an Autism Evaluation

This study is for caregivers of young children (aged 16 to 48 months) who are on a waitlist for or are planning to join a waitlist for an autism evaluation. Eligible caregivers who enroll in this study will receive access to early support and guidance for their child’s development with a fully online caregiver training program. The program aims to teach strategies to support social, language, and other important skills of young children.

Participation would include:

• Online trainings (about 2 hours each) at your own pace, with the ability to choose topics that best address your child’s strengths and needs
• Interviews online at 3 time points (1-2 hours each)

Benefits include:

• Access to an online program for caregivers at no cost
• $150 upon completion of study activities

If you are interested in participating or want to learn more, you can reach out to optin@drexel.edu, text or call (215)-571-4516, or follow this link to fill out an interest form online: OPT-In Study Interest Form.

STUDY FLYER

Behavioral Support Training for Parents and Caregivers of Autistic Children

We are NOW recruiting for a research study aimed towards:

• Autistic adults (18+ years old) who experience behavioral challenges that impact daily routine, safety, self-care, and/or quality of life.
• Caregivers of autistic adults**

** Caregiver and autistic adult pairs ("dyads") should be living in the same home at least 50% of time throughout participation in this study. ** Caregivers should be the Legally Authorized Representative (LAR) or legal guardian of the autistic adult, or the autistic adult must consent to the caregiver's participation in this study.

Seattle Children's Hospital, Els for Autism Center , our team at the AJ Drexel Autism Institute have collaborated to develop a new intervention, the RUBI for Autistic Adults ("RUBI-A") program, to help autistic adults and their caregivers work together to come up with helpful solutions to daily challenges . We hope that the RUBI-A program can help support both autistic adults and their families at home and in their communities.

Participation in the RUBI-A study will last up to 20 weeks. After speaking with research staff and completing questionnaires and evaluations to confirm eligibility, individuals will be randomly assigned to one of two programs: the RUBI-A program or an autism psychoeducation program.

Participants will complete program activities (e.g., attend virtual or in-person intervention sessions, complete assignments) and answer online questionnaires throughout their participation in both interventions.

We encourage both caregivers and autistic adults to work collaboratively during this study, however, there are options for autistic adults and their level of participation (based on preferences and abilities):

• Participate in ALL study activities (questionnaires and intervention responsibilities);
• Complete questionnaires ONLY ;
• Complete intervention responsibilities ONLY;
• Participate in NO study activities but consent to their caregiver(s) completing study activities.

Caregivers and adults will be compensated for their time completing questionnaires across study timepoints.

If autistic adults or caregivers are interested in learning more or participating, they may reach out to the study team via email (RUBI@drexel.edu) or via phone (215-571-3219 - text or call available) to learn more.

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We completed 3 studies screening toddlers for possible autism during their well child visits to pediatric practices in the community. Our FAST study is a follow-up study that gets an update on the children – now school-aged – who were not diagnosed with autism during one of these studies. We are doing this research to learn how doctors, nurse practitioners, and other community providers can identify autism earlier which helps autistic children get supports and services. This study is in partnership with University of Connecticut and Emory University (following children from the Georgia State University site). Families who participate will:

1. Complete an online screener questionnaire about their child's development and behavior, and tell us whether they have any concerns. This will take approximately 15 minutes. Compensation is provided.
2. Some families may be asked to complete other questions over the phone (estimated to take 20 minutes).
3. Some families will be invited for an in-person evaluation to better understand their child's strengths and challenges.

This study is only for families who were enrolled in one of our toddler studies between 2012 and 2020. If we contacted you directly, we want to learn how your child is doing today. To get your personalized survey link, please email us at faststudy@drexel.edu, or call or text 215-571-3897 with your child’s first and last name, and date of birth.

We are NOW recruiting parents/caregivers of children 2-8 years old who:

The goal of this study is to evaluate the RUBI Parent Training program for families of young children who have autism and challenging behaviors.

Participation would include:

The focus of RUBI sessions is to help caregivers better understand how to respond to, and prevent, challenging behaviors as well as help them promote positive behaviors and build better adaptive skills.

Benefits to participating in this study includes:

If you are interested in participating or learning more, you can reach out to RUBI@drexel.edu!