Congratulations to Dr. Jessica Klusek and collaborators Dr. Leonard Abbeduto, Dr. Julie Lounds Taylor, and Dr. Angela John Thurman on the publication of their new article “Planning for the Transition to Adulthood: Parent Perspectives on the Planning Process and Experiences of Young Adults with Fragile X Syndrome.”

The study explores how young adults with Fragile X syndrome (FXS) and their families experience the transition from high school into adulthood, with a particular focus on employment, independent living, social relationships, and family involvement in transition planning. Researchers surveyed parents of 39 young adults with FXS who were completing high school or formal transition programs to better understand the supports and opportunities available during this important life stage.

Key Findings

  • Many families reported that there was no formal plan in place for what their son or daughter would do after leaving school or a transition program, despite being on the verge of adulthood.
  • Parents of young adults with stronger adaptive skills had higher expectations for future employment and independent living, but employment preparation was limited regardless of skill level.
  • Social networks were often small, with many young adults having few friendships and limited opportunities to interact with peers, particularly those without disabilities.
  • Parents generally felt included in transition planning, but many wished they had a greater role in identifying employment opportunities for their child.
  • The authors emphasize that transition planning should provide more individualized employment opportunities, stronger supports for building social connections, and greater collaboration with families to help young adults with FXS achieve meaningful adult outcomes.

Congratulations again to Dr. Jessica Klusek, Dr. Leonard Abbeduto, Dr. Julie Lounds Taylor, Dr. Angela John Thurman, and the research team on this important contribution to improving the transition to adulthood for individuals with Fragile X syndrome and their families. You can read the full article here.

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