Family challenges posed by fragile X syndrome

A post that has nothing to do with index cards….

Rebecca Feinstein and I interviewed 39 family caregivers of adults living with intellectual disabilities arising from fragile X syndrome. I presented some of our results at the annual meeting of the MacLean Center for Clinical Medical Ethics here at the University of Chicago. The sound quality of this 20-minute presentation could be a little better. It conveys some important challenges that individuals and families deal with every day. These interviews underscore how gaps in our social assistance systems impose high costs on many people.

These interviews also brought out one issue that is often overlooked: The safety issues confronting many family caregivers, particularly those caring for young men with a variety of intellectual or behavioral diagnoses. We discuss many other issues, too. So I don’t want to overstate the magnitude of the problem or have it overshadow more familiar concerns. I should add that our family not faced this issue in our own caregiving challenges. It is part of the mix.

This morning’s New York Times includes an excellent essay by my SSA colleague Matt Epperson on police encounters with individuals who are experiencing severe mental illness. Issues of intellectual disability need to be part of this conversation. It is often left out.

Author: Harold Pollack

Harold Pollack is Helen Ross Professor of Social Service Administration at the University of Chicago. He has served on three expert committees of the National Academies of Science. His recent research appears in such journals as Addiction, Journal of the American Medical Association, and American Journal of Public Health. He writes regularly on HIV prevention, crime and drug policy, health reform, and disability policy for American Prospect,, and other news outlets. His essay, "Lessons from an Emergency Room Nightmare" was selected for the collection The Best American Medical Writing, 2009. He recently participated, with zero critical acclaim, in the University of Chicago's annual Latke-Hamentaschen debate.

4 thoughts on “Family challenges posed by fragile X syndrome”

  1. What's the corresponding number with parents of nominally nonimpaired young adult males living with their parents?

  2. The safety issue is often forgotten. Even people who work in CILA's (group homes) face high rates of injury due to aggression. Family caregivers certainly have better insight into avoidance strategies, but on the other hand spend far more time, all told, with their adult children with intellectual disabilities that include behavioral difficulties. And even people who only rarely act out aggressively create the expectation/worry among those who know them that aggression could happen. Medication were formerly used (too often) but are not a viable solution due to side effects.

  3. Fragile X is a population I have yet to work with. But as a BCBA the majority of my clinical work is with children with autism and their families. Here in CA, while the state was already a leader nationally in paying for behavioral services, private insurance companies are now required to cover it as well. The benefits are profound. Growing recognition ultimately means parent and pediatric awareness, which translates to early intervention, which translates to great reduction in externalized costs: dealing with a child with severe behavioral issues and a limited functional communication, self-care, leisure and social skills repertoire can be a disastrous burden on any family, to say nothing of the child him/herself.

    While costly – intensive behavioral services can easily reach into the thousands per month, they are not only a humane investment in an individual's potential, but a savings to society over a lifetime. Teach a man to fish.. yadda yadda..

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