Independence When Living with Fragile X Syndrome in Adults

Fragile X Syndrome (FXS) is an intellectual disability, and many assume it means those affected can never live independently. However,  the rate of unemployment among all people with any type of disability declined in 2015, reports the U.S. Bureau of Labor Statistics. Meanwhile, the overall unemployment rate of people with intellectual or physical disabilities remained higher than otherwise healthy individuals.  In other words, independent living with FXS  is more than just a possibility.

Working while living with an intellectual  disability poses additional challenges, including difficulties in maintaining positive working relationships, trouble performing tasks involving critical thinking and overcoming other symptoms, including mood changes, explains the National Fragile X Foundation. Fortunately, teens and young adults with an intellectual or developmental disability (IDD), including FXS,  can achieve independent living through the help of coworkers, the community, research and direct support professionals (DSPs).

Awareness of FXS in the Workforce Helps People Learn

The first step toward attaining independent living is entering the workforce, but this is complicated as people with FXS often have difficulty learning new tasks. Similarly, difficulties with organizing, planning, anticipating and engaging in everyday work responsibilities can discourage these individuals  from even trying to work.

Public awareness also helps to educate other employees about the challenges co-workers with FXS face. This creates a positive learning environment that reinforces the goals of independent living.

For example, coworkers may help teach others with an IDD about how to perform specific job functions properly, but this teaching may need to be extended. In other words, work-training programs for people affected by an intellectual disability should be more detailed and repetitive than training for other employees.

Community Involvement Is Critical to Successful Independent Living

Community programs can also play a role in helping people with FXS achieve independent living. Some communities may offer financial support or counseling to help these individuals avoid irrational thought processes and maintain health. This includes providing treatment for substance abuse or other possibly negative actions.

There continue to be public health gaps in helping individuals with FXS overcome challenges. According to the Centers for Disease Control and Prevention (CDC), communities should assess the current struggles and factors affecting these people, which include the following:

  • Epidemiology, including gender, age, ethnicity, socioeconomic status, and race, should be studied. While this information may seem irrelevant, it can help indicate if people  have additional disparities that may limit their access to housing, work opportunities or health care.
  • Early identification of people living with an IDD, especially those who were not diagnosed as children, needs to be emphasized. Early identification provides a safeguard against the worsening of symptoms by giving those affected access to rehabilitative therapies or other treatment measures.
  • The impact on individuals and families of those with FXS should be included in any relevant studies. Since people living with this intellectual disability may rely on families for care, the impact on families must be part of the conversation.
  • Transition out of school, into the workforce and using functional skills demands assistance to provide the best outcomes. Each transitionary phase represents another step toward independent living. Consequently, the transition periods should be a top priority in any community action.
  • Co-occurring conditions need to be treated and managed. People living with FXS have a predisposition to certain mental and physical health problems, ranging from hypotension to intellectual decline. As a result, any co-occurring conditions should be re-evaluated often and continually treated.
  • Interventions and outcome measures should be used in achieving and maintaining successful integration into society and independent living. Outcome measures seem impersonal, but they are critical factors in reviewing the success of any program designed to promote independent living of individuals with FXS.

Can Medications or Psychotherapy Facilitate the Transition to Independent Living?

The use of medications for treating FXS remains a topic of discussion among researchers and government agencies. While most treatment plans defer to non-medication treatment as the preferred means of managing this intellectual disability, people with severe symptoms may benefit from medications.

For example, those with this intellectual disability may exhibit severe mood swings, symptoms of a personality disorder or anxiety may benefit from medications to treat specific symptoms.

Researchers are also continuing to look for and create medications that directly affect how the disability changes brain structure. According to Science News, a recent study of an experimental drug for FXS has been proven ineffective in two studies, and each study included the drug’s possible effect on adolescents. As a result, the findings suggest the only medications available to provide the greatest benefit will continue to be those that treat the symptoms of FXS.

Symptom management remains a critical component of successful transition and maintenance of independent living, even if it is through medicated symptom management or psychotherapy.

Care providers, such as DSPs, must realize the benefits of apps for managing all intellectual disabilities  as well. The list of apps used to help people, published by Autism Speaks, includes apps that help those with FXS. In other words, the apps used to help with communication in those with autism are applicable to encouraging communication and social skills in people.

Meanwhile, the FRAXA Research Foundation has created a comprehensive resource for helping children, adolescents and adults with FXS and their peers or caregivers overcome behavioral problems and learning difficulties.

Final Thoughts

The transition to independent living for individuals with FXS is difficult at best, but it is not impossible. Training programs for DSPs, community programs for families and friends of those with IDDs and real-time assistance via smartphone apps can help further this transition. Additionally, people with FXS can learn how to manage their disability proactively when  more people understand what resources are available.

This may seem like a minor step toward independent living, but any step can be a step in the right direction.

In your role, you need to work to improve FXS awareness in your community, and find out what apps and resources are available versus being actually used. Use this information to assess the needs of those with an intellectual disability in your community, and make a difference in their lives by fostering the goal of independent living. It will be hard to do, but you can do it.  In fact, this mantra applies to the very people living with FXS that this post is about.  

Jason Vanover

Working in health care since 2005, Jason's body of experience encompasses dozens of care settings, including Senior care, psychiatric facilities, nonprofit health service centers, group homes for those with developmental disabilities and beyond. Jason understands the need to tailor his skills to each setting to encourage the best treatment outcomes and promote an inclusive, healing environment.

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