Adulthood and Fragile X Syndrome

Challenges faced by adults with Fragile X syndrome — and their caregivers — may include cognitive, learning, communication, and physical and medical issues. Difficulties in adulthood often begin with the transition from adolescence into adulthood and continue throughout their lives. As they age, common issues families face include housing, employment, and transportation. However, with support and intervention strategies, adults with Fragile X syndrome can lead fulfilling and meaningful lives.

Adult Life ebook cover

Adults with Fragile X Syndrome: Making a Better Tomorrow

We have built the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome. Our ebook includes chapters on the transition to adult services, transportation, housing, employment, volunteering, day programs, college and post-secondary education, and daily living.


From Our Info Series

All of our Info Series are available to read online and as a PDF download (in both English and Spanish) designed to be easily printable on your home or office printer. You may also want to browse our other available Info Series flyers on various topics for both FXS and premutation carriers.

Info Series on adult living including volunteering, employment, and day programs.

Daily activities in place of school may include a paying job, volunteering, day programs, or post-secondary education.

Link to Info Series on adult living and transportation.

Various transportation options and some tips on easing into new experiences.

Link to Info Series on adult living and housing.

Moving into adult housing is life-changing for everyone involved, and preparation is key!

Link to Info Series on adult living and housing.

Moving into adult housing is life-changing for everyone involved, and preparation is key!


Treatment Recommendations

Links to Transition to Adult Services for Individuals with Fragile X Syndrome.

This paper is focused on the transition from adolescence to adulthood. Because the research on this topic is limited, much of the information is anecdotal, meaning it is taken from clinical experience or provided by parents. Formal studies are referenced.



  • Being Prepared for Adulthood.

NFXF Webinar: Being Prepared for Adulthood

By |Dec 15, 2016|

Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.


From Our Blog

Employment Strategies and Successes — Webinar

By |Nov 2, 2023|

In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!

Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome

By |Oct 25, 2022|

Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.

  • Piggy bank squirting coins out of the coin slot.

The ABLE Employment Flexibility Act

By |Jan 13, 2022|

The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.

  • A family and dog outdoors on the steps up to their deck.

8 Tips on Transitioning Your Child to Adult Services

By |Dec 5, 2018|

Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.

  • Bagger Ian and manager Anthony in King Sooper grocery store

Getting and Keeping a Job

By |Feb 3, 2016|

It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.


Sample Interview Questions for a Care Provider (PDF)
Employment questionnaire laws and regulations differ from state to state. We cannot guarantee that all of the sample questions can be asked in your state. Check with your state’s Department of Fair Employment or consult with an attorney familiar with employment law in your area.

Living Settings Checklist (PDF)
A checklist of some of the most important consideration to evaluate your child’s individual needs when considering a living setting.

Study: Transitioning to Adulthood with Fragile X Syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.

Exploring the Adult Life of Men and Women With Fragile X Syndrome: Results From a National Survey
Using data from a national family survey, the authors describe the adult lives (i.e., residence, employment, level of assistance needed with everyday life, friendships, and leisure activities) of 328 adults with the full mutation of the FMR1 gene and identify characteristics related to independence in these domains.