Planning for the Transition to Adulthood: Parent Perspectives on the Planning Process and Experiences of Young Adults with Fragile X Syndrome

Objectives Relatively few young adults with fragile X syndrome (FXS) meet the normative expectations of adulthood, although there is heterogeneity in this regard. The present study examined the preparation for the transition to adulthood experienced by young adults with FXS and their parents. Methods Thirty-nine young adults with FXS and their primary caregiving parents participated. Those with FXS were in their last year of, or had recently left, high school or a formal transition program. Parents completed surveys about the formal transition planning process. We examined the role of the young adults’ adaptive behavior skills in transition planning. Results Among other things, parents of young adults with more advanced adaptive skills had higher expectations regarding the latter’s employment capabilities, although employment preparation did not differ for the two subgroups of young adults. Parents were generally satisfied with their own involvement in transition planning, except as regards employment where they wanted more input. The social networks of participants with FXS, especially those with less developed adaptive skills, were limited. Conclusions Transition planning for individuals with FXS should be designed with greater attention to matching employment and social experiences to the young adult’s ability and to soliciting parental input about employment.