FASD is widely understood to be a hidden disability.
Although it has been over 40 years since the harmful effects of prental alcohol exposure were identified in medical literature, the majority of individuals with FASD—of any age—are not properly diagnosed. Unfortunately, service providers in the various systems of care and personnel in the education and criminal justice systems are not trained to identify and appropriately consider the needs of a child, adolescent, or adult with FASD. Further contributing to the lack of recognition are federal, state and private insurance disability classifications that do not consider FASD as an eligible condition for services.
Even among those who do recognize FASD, the focus is often on children and not adults with the disorders.
As individuals with FASD enter adulthood, they and their family members and caregivers face additional challenges. Adults are increasingly vulnerable to the secondary disabilities associated with FASD such as trouble with the law, mental health problems, an inability to live independently, and as victims of crime themselves. While a proper diagnosis, access to the best interventions, and a positive environment are beneficial, they often do not prevent secondary disabilities.
Family members of adults living with FASD—including parents, grandparents, siblings, and other relatives—face their own unique challenges. Their lives are often consumed with seeking suitable services for their loved one and helping them reach their potential in a safe and healthy environment. One priority for FASD families and advocates is the development of dependent residential living programs and environments designed specifically for the needs of adults with FASD.
NOFAS affiliate, FASD Communities is a non-profit organization founded by FASD parents committed solely to, “Providing a FASD resident-based living center that combines a homey atmosphere with meaningful vocational opportunities, that focuses on what you [a person with FASD] can do, not just what you can’t. A place to develop your talents, engage in sports and recreational programs and find plenty of lifelong friends.”
Consider taking a survey to share your experiences: National FASD Communities Participant and/or Caregiver Survey
A Washington, D.C. Metropolitan Area-based group comprised of parents of adults with FASD has also recently come together to discuss existing and new independent living prospects for their children and all adults with FASD. NOFAS is commited to working with FASD Communities and the new Washington, D.C. group to support their missions and to recruit more parents to the cause. Contact NOFAS to learn more and get involved.
NOFAS is in the process of gathering additional information to post on this page.
For a directory of local resources for people with FASD, click here.