Mothers Study- Autism and Fragile X

This study is focused on understanding the life experiences of mothers who have a child diagnosed with fragile X syndrome or autism. The overarching goal is to understand how normal variation in language and cognitive features may be associated with the FMR1 gene, a gene that is involved in both fragile X syndrome and autism. The results of this study will help us understand the experiences of mothers who are parenting a child with fragile X syndrome or autism, with the goal of informing the development of family-centered supports.

This study is funded by the National Institute on Deafness and Communication Disorders.

Who can participate?

  • – Mothers of children with fragile X syndrome
  • – Mothers of autistic children
  • – Mothers of typically developing children

What does the study involve?

Virtual or in-person participation options are available. In either format, participation will involve filling out some questionnaires  prior to your appointment (~ 45 minutes) and completing in an assessment (~3.5 hours). You will be asked to:

  • – Answer some questions about cognitive, language, and social styles
  • – Provide a genetic sample (cheek swab) to allow us to index FMR1 gene variation

What is the compensation?

You will receive $80 for completing study activities.

Can you share the results?

If requested, we can share genetic testing results and provide a brief report summarizing performance on standardized assessments.

How can I get more information?

Interested in learning more? Reach out to us at or (803) 576-7359.