While getting testing done for my daughter, my doctor’s assistant sat with us and listened in for 2 hours. While talking with a new person who actually got FASD, the assistant asked honestly why I thought it was so important to diagnose when there are no services available for kids with FASD. I just stared, shocked a little – it was more than a one line back at her. So I wrote her a letter with this in it. Thought I would share in case someone here has a doctor they should send it to:
Why diagnose FASD if there are no services available in CA?
Parenting:
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, and have low reasoning skills AND have over-reactive fight flight responses and sensory integration problems will help move away from typical parenting styles that will escalate unwanted behaviors. The difference in outcome from just this one factor is huge – for example, it can reduce the need to increase medications, reduce out of home placement, reduce educational struggles and the overall stress level for the family. Knowledge gives the family the tools to advocate correctly.
Education:
Knowing that a child has a brain based disability and that best practices for a child with FASD is often opposite of common school practices will alleviate behavioral problems. While the school may not know this, if the parent is informed, they can advocate correctly. There is tons of research and literature. Knowing PAE is involved can also alleviate the school’s approach of waiting and seeing 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.
Medical:
FASD patients are medically high risk patients 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 know their child’s diagnosis.
Mental Health:
90% of people with FASD are also 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, medications react differently with FASD, so it is an important piece of information when choosing medications and dosing. Another factor is 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.
Lifetime:
A child that is viewed as a problem will continue to be a problem in adulthood. A child that has been understood and supported has a chance at becoming a productive member of society. A child that has an explanation for their differences vs. thinking they are just bad has a completely different outlook on life.
Services:
There cannot be services for people with FASD if we are pretending it doesn’t exist because it’s an uncomfortable subject. There needs to be patients for services to exist.
I’m so glad you asked, it’s such an important question. I hope I’ve helped clarify and nudge your opinion just a little. :0)