Pilot and Try-Out of the Draft TPI

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

This study, conducted by researchers at the University of Washington, aims to redesign and pilot test an evidence-based family intervention (RUBI) for autism and behaviors that interfere with quality of life and self-determination in partnership with autistic adults, their caregivers, and their providers to ensure that the redesigned intervention is appropriate and effective for this community. We believe this study is important because autistic adults and their families are currently the most underserved population of autistic individuals. Additionally, the Autistic Self Advocacy Network recently called for increased work to help autistic adults with challenging behaviors and their supporters. We hope that this study can help make progress toward meeting this need for the autistic community.

What are the goals of the study?

In partnership with autistic individuals, their caregivers, and their providers, we hope to redesign an intervention for families of adults with autism and behaviors that interfere with their quality of life. We also hope to test the redesign intervention with ten families to ensure the redesigned intervention is feasible and appropriate for families.

What will happen during the visit or online?

There are two phases to this study:

For Phase 1, we are looking to recruit autistic adults, caregivers of autistic adults, and providers who service autistic adults. Focus group members will be asked to review materials about an established intervention for families of autistic children and answer questions in a 2 hour focus group regarding the applicability of the intervention for adults and suggestions for improving fit with families of autistic adults. Participants in Phase 1 will also be asked to fill out short surveys about the intervention during the focus groups. Participants will be compensated $100 for participating in focus groups.

For Phase 2, we are looking to recruit autistic adults and their caregivers to pilot the redesigned intervention. Families will be asked to attend 8-10 weeks of intervention (1 hour/week) at a time that is convenient for them. They will also be asked to fill out surveys about themselves and the intervention 4 times throughout the intervention. Participants will each be compensated $25 for each set of surveys.

How will this help families?

Currently, autistic adults and their families report having an extremely hard time accessing services. We hope that by redesigning a short term, evidence-based intervention for autistic adults with behaviors that interfere with their quality of life and their families, we can help expand access to this service and give autistic adults and their families tools to improve self-determination and quality of life.

Discoveries of new genetic causes of autism spectrum and other neurodevelopmental disorders is an important first step. However, individuals with newly uncovered diseases face challenging questions that require further research to improve diagnosis, prognosis, and therapeutics. Example of genes under investigation include EBF3, EIF2AK1, EIF2AK2, STXBP1.

What are the goals of the study?

Improve knowledge of the genetic basis, mechanistic determinants, range of outcomes and advance clinical knowledge for newly diagnosed autism spectrum and other related neurodevelopmental disorders uncovered by the efforts of the Undiagnosed Diseases Network and other genomic studies at the Duncan Neurological Research Institute and Baylor College of Medicine. Objectives include defining diagnostic criteria, understanding the natural history, facilitating prognosis, establishing a biorepository, and investigating genetic and genomic alterations.

What will happen during the visit or online?

(1) Providing demographics and medical record information. (2) Blood samples will be obtained from the patient as well as the parent and healthy siblings. In some cases, based on the preference of the family, saliva samples may be obtained rather than blood for DNA studies. (3) Skin biopsy to establish fibroblasts for functional and genetic studies. (4) Depending on the genetic alteration, participants may be eligible for remote neuropsychology surveys, in person neuropsychology and autism assessments, and in person brain MRIs.

How will this help families?

The research studies may improve the interpretation of DNA variants in autism spectrum disorders, confirm the diagnosis or carrier status of disease, help provide a better understanding and management of the disease in the family, and better understanding of the genetics of the disorder with better information about its inheritance or natural history. The information which will become available about these disorders may be important to the diagnosis of others and development of new treatments.