A foster Mum recently received the diagnosis of fetal alcohol syndrome (FAS) for her daughter from a well-known and highly experienced diagnostic center, in the sense of a full extent of the disorder. For this diagnosis, she took the drive of over 7 hours, as there was no suitable diagnostic center nearby. Due to numerous impairments in everyday life, she applied for a care level for her daughter following the diagnosis. She met a doctor who was examining her daughter's case and heard the following:
"Well, I do not think your daughter suffers from fetal alcohol syndrome, because I've seen other cases: Your daughter looks quite normal, and believe me, I have four children myself, there's no such thing. It's not always that easy with children, you know. And I've already seen so much in my professional practice, so I know what I know. "
(Note: This was a general practitioner who did not specialize in the assessment of children with fetal alcohol spectrum disorder).
What about the visibility of fetal alcohol syndrome (FAS)?
I would like to quote a very pertinent passage from the book of a renowned American psychologist:
"Ironically, babies with the most obvious physical and mental impairments can fare better later in life because teachers and parents immediately recognize that something is wrong and make accomodations. When prenatal or postnatal damage is more subtle, the resulting impairments are harder to recognize, so adults are less likely to be compassionate and helpful about the challenges these children face. When your child appears physically perfect, it´s easy to erroneously assume that his or her poor behavior is willful and intentional." ("The Connected Child", by Purvis, Cross & Lyons Sunshine, page 34f.)
Unfortunately, this passage makes it clear that much more training and education of the public will be needed, in order to avoid that life, which can be stressful enough anyway, becomes more difficult for affected children and their families due to non-knowledge and lack of tolerance of other people. In fact, fetal alcohol spectrum disorder (FASD) is an outwardly invisible disability in about 70-80% of the cases. Only a full manifestation of fetal alcohol syndrome (FAS) also leads to more pronounced facial features such as small eyes or a narrow upper lip!
This means that the majority of the affected children, for example, can suffer from forgetfulness, severe learning disabilities, or behavioral problems, but at first glance look largely normal. As a result, it is not uncommon for affected children to be evaluated as lazy or lacking motivation, or for their parents to have an educational error. How this opinion could affect the children and their parents, who face the daily burdens that fetal alcohol syndrome can bring with, one would not like to imagine.
Would you say to a child sitting in a wheelchair, "Why don't you take the stairs, it cannot be that difficult." No, that would be a complete faux-pas, very clear to everyone. Can a person suffer from severe disability and disability only when he looks like a handicapped person? For example, is breast cancer not a serious disease, as it is not necessarily visible at first glance?
- Do people who suffer from behavioral problems, learning disabilities or other limitations for good, non-self-inflicted reasons (maternal alcohol consumption) have not the right to be questioned: "What has happened to you?"
- Should diagnoses made by reputed and specialized centers not be at least recognized in order to provide those affected with the best possible, individually tailored assistance and therapy?
Prejudices or ignorance are not helpful for affected people. Therefore I offer psychological online advice and consultation through my online tool, available to anyone (especially parents) with internet access and a secure place where you can talk freely and openly to me about your worries, problems and anxieties around fetal alcohol syndrom (FAS).
Every year on September 9th is FASD Awareness Day, the international day of the alcohol-injured child, more information e.g. here. Let us, each and every one of us, strive a little more tolerance if we cannot immediately see and understand the difference!
In this sense, I wish all disabled people and their families a tolerant, and more unbiased society!