If the statistics are now much higher than previously thought and the risk has been known for decades; “Why is it that so few children are actually diagnosed and why do we not have systems in place to help them?” That is the question that so many families affected by FASD are asking!
Because we do not want to talk about it and the stigma. It is someones fault. Most of the research and money has focused on prevention and research. In the US funds are linked to prevention instead of intervention leaving those with FASD with no place to find help or hope. Currently, there is no dedicated service silo where FASD is acknowledged to fit under disabilities and schools have no dedicated qualifier for services as well. In the most recent months, we have seen some movement in some states to add FASD as a qualifier for some waiver programs in the US.
We have come a long way in the last twenty years on knowledge and awareness about FASD but we still have a long way to go. When we adopted our children, they did not tell us they were prenatally exposed to alcohol. The child welfare authorities highlighted their illegal drugs exposures but neglected to think about the importance of discussing mothers alcoholism and their prenatal alcohol exposure in the records. My children along with many other Children with underlying FASD’s will find their diagnoses under the ALPHABET SOUP of symptoms they display. By playing detective we find their hidden answers by looking at prenatal alcohol exposures. They all of these diagnoses have various levels of FASD.
Attention Deficit Hyperactivity Disorder, Attention Deficit Disorder, Oppositional Defiance Disorder, Autism Spectrum Disorder, Bipolar Disorder, Learning Disability, Intellectual Disability or Developmental Delay, Sensory Processing Disorder and so many more.
We look at the symptoms and not the underlying challenge. For kids with prenatal alcohol exposures, we are often looking at their underlying behaviour diagnoses like ADHD, Sensory processing disorders, Oppositional defiance disorder, autism, conduct disorder and others from the alphabet soup of diagnoses.
Without maternal confirmation of alcohol exposure, we do not have the full picture and so we treat the symptoms that present. Even when we have confirmation of alcohol exposure it is often difficult to obtain the accurate diagnosis. With children with organic brain damage from prenatal alcohol exposure, the tools we use may or may not help the challenges as they are addressing the symptomatology and not looking at the underlying cause.
FASD is hard to get diagnosed because it requires admission of maternal exposures. It is estimated that up to 70% of children in the care system are prenatally exposed to alcohol via recent studies, these care systems may or may not have knowledge of prenatal exposures to provide confirmation for diagnosis of FASD.
How do we ask the question? Was your child prenatally exposed to alcohol? We know that by the time a Mom finds out she is pregnant, the baby may have inadvertently been exposed to alcohol. The facial features and cellular structure may have already been affected before the mother misses her first period. Mixed messages from the media, doctors, and society about the effects of alcohol have contributed to the confusion about FASD and it has created stigma. It’s time to stop the blame and help us help our children and adults find the underlying understanding.
The voices of fetal alcohol have been fighting for decades to raise awareness about FASDs. Our voices are getting stronger and a few of us are banding together to continue in the work of Teresa Kellerman, Bonnie Buxton, Brian Philcox, Jocie Devries, Delinda McCann, Vicky McKinney, Bruce Richie, Vicki Russell, Susan Rose and so many more who have walked before us. The International FASD groups have united to help move the FASD voice forward with joining Red Shoes Rock and Celebrating International FASD Day.
We are stepping out to unite our knowledge and speak up for those who cannot and take our Red Shoes to run for FASD. We can no longer wait and we need HOPE to stop the Stigma.