FASD: Why get it diagnosed?

Why seek out a diagnosis on the FASD spectrum?

(printable version, pdf)

For many parents, professionals and individuals who already have a confirmed FASD diagnosis, this is a confusing question. Why wouldn’t you want a correct medical diagnosis of an FASD? For most of us, proper and accurate diagnosis has opened doors to understanding – in our families, in ourselves, and for professionals and the support systems around us. For many of us, a diagnosis of FASD is driving care, serving as a vehicle for awareness, and gives crucial comfort and relief: there’s a reason for these behaviors, and it has to do with the brain. It helps us shift our understanding (and everyone else’s) from this person WON’T behave as others do to this person CAN’T behave as others do because their brain does not work the same.

Nevertheless,  this question is often asked by parents and family members who suspect an FASD but who haven’t yet gotten a diagnosis, particularly in areas where there is little diagnostic capacity, support for individuals or families impacted by the disorder,or any real understanding of FASD.  Professionals who know little about FASD often discourage diagnosis, saying that ‘there’s nothing you can do’ about it, or the WHY of behaviors doesn’t matter when considering what to do about them. But parents, family members, caregivers, professionals, and individuals themselves who have been impacted by FASD know that diagnosis is crucial, and in fact, the question of WHAT to do about behaviors has everything to do with the WHY.

We asked our online parent forum, Shifting the Paradigm (on Facebook), reasons to diagnose, and here’s what parents said:

  1. Because the information you get at a diagnosis is very valuable. Diagnosis involves neuropsychological testing, adaptive functioning, speech, and occupational therapy evaluations. All of this helps you understand the person with FASD.
  2. Understanding leads to appropriate accommodations and environmental change. Once we understand the behaviors associated with FASD as the result of brain damage acquired in utero, we can see these behaviors as symptoms of a permanent physical disability, vs. a ‘choice’ or evidence that the child is ‘bad.’ It shifts our understanding of the meaning of behaviors: from the person IS a problem, to the person HAS a problem. As our understanding changes, so does our response as caregivers, parents, professionals, and support personnel.
  3. Even though there may not be many people around you who understand what FASD is, there is actually a huge body of information and research out there and having the diagnosis will lead professionals, support personnel, and all other people around you or your child to greater understanding.
  4. Because if you use medications, they usually work differently in individuals with FASDs, and this provides a reason why.
  5. Diagnostic rates are incredibly low and the majority of people with FASDs are either undiagnosed or diagnosed incorrectly. In order to drive increased diagnostic capacity and create accurate diagnostic rates, we need to seek out diagnosis whenever possible.
  6. Having a proper diagnosis allows you to network with other families who have similar diagnoses. There is great power in community.
  7. It gives you a diagnostic trail that can be used to acquire services and monies (e.g., ID/DD services or SSI) .
  8. A diagnosis of one of the FASDs is increasingly being recognized as a mitigating factor in the criminal justice system. Of course, prevention of criminal acts by appropriate supervision and support is everyone’s goal, but if there is justice involvement a diagnosis on the spectrum can help everyone involved understand the situation differently, and may result in more appropriate sentencing.
  9. If we bury our head in the sand, people with FASDs might just think they are bad or something is wrong with them. Many individuals who have received a diagnoses report feeling better knowing it is not their fault.
  10. Labels happen to those who are different, and by getting an accurate diagnosis we take control of that label. Labeling a person with FASD comes with a wealth of information explaining the “whys” of behavioral differences. Instead of uninformed people around him choosing labels like”stupid, willful, defiant, delinquent, incorrigible, trouble maker, bad, lazy “–people can see individuals with FASD as who they really are: sweet, eager to please, creative, bright, and disabled due to prenatal alcohol exposure.

For more information about fetal alcohol spectrum disorder and understanding behaviors differently, please see Diane Malbin’s book: FASD: Trying Differently Rather than Harder, or take one of our trainings: fafasd.org