A thoughtful response to the common question:
Why diagnose FASD if there are no services available in CA?
Why Diagnose FASD when there are no services available?
Thank you for asking this important question. Being diagnosed with FASD is essential for my child and my family for so many reasons. I've listed just a few areas where a diagnosis will help:
Knowing that a child has organic brain differences and is not just being defiant changes the way one views that child. Understanding that children with FASD do not understand consequences, cause and effect, have low reasoning skills, have over-reactive fight-flight responses and sensory integration problems will help move away from typical parenting styles that escalate unwanted behaviors. The difference in outcome from just this one factor is pivotal. For example, understanding a child's condition can create reductions in the need to increase medications, out of home placements, educational struggles and the overall stress level for the family. Knowledge provides the family tools to advocate effectively.
Knowing that a child has a brain-based disability and that often best practice for a child with FASD is opposite of the school's standard practice will alleviate behavioral problems. While educators may not have this information, if the parent is informed, they can advocate. The literature on FASD and education is vast. Knowing prenatal alcohol exposure is involved can also alleviate the school’s approach of "wait and see" if the child catches up developmentally. We know that being identified and receiving special education services by age 6 improves outcomes for people with FASD.
FASD patients are medically high-risk with over 400 co-morbid conditions. Many diseases seen in our aging population, occur in people with FASD at a much younger age. The current average lifespan is 34. Again, until all doctors know this, a parent can inform when they have a diagnosis.
90% of people with FASD are diagnosed with a mental health condition. Unfortunately, treatment needs to be considered carefully with this population because traditional methods do not work for the same reasons parenting styles need to be adapted. Also, drugs react differently with FASD, so it is an essential piece of information when choosing medications and dosing. Another factor is that the Regional Center does not accept MH clients. A person with FASD has organic brain damage as their primary condition - a developmental disability that they should recognize under the Lanterman Act, regardless of IQ.
A child viewed as a problem will continue to be a problem in adulthood. A child that's understood and supported can become a productive member of society. A child that has an explanation for their differences vs. thinking they are bad has an entirely different outlook on life.
If we continue to ignore FASD because it’s an uncomfortable subject, there will never be change. For services to exist, California needs patients.
I’m so glad you asked, it’s such an important question. I hope I've helped clarify and have changed your perspective on why the diagnosis of FASD is important.