FASD awareness: A multifaceted conundrum

Recently, I saw a post ““FASD Awareness” – what does that mean?” (Source: http://ow.ly/oRy830lLvkz). September is the FASD awareness month. So that is a valid question. This is my own view of that question. I believe the answer to this question to some extent is based on the definitions of ‘Awareness and intelligence’.

Google definitions for ‘awareness’ are
“knowledge or perception of a situation or fact or concern about and well-informed interest in a particular situation or development.”

On the other hand, What is intelligence? It’s “The ability to acquire and apply knowledge and skills.” (Google definitions).

Considering the difference and interconnected nature of awareness and intelligence, I believe we need to raise both the knowledge, and the ways to act on that knowledge. We need to raise awareness and intelligence through proper education programs not only to be aware but ability to act on that knowledge.

Alcohol consumption is harmful. It’s no secret anyone. But does anyone act intelligently on that knowledge and awareness? I think it’s a big fat “NO”. I have three questions to ask from all FASD-related professionals, community and other interested parties.

1. What is missing between awareness and intelligence in the case of FASD?

2. Who should be aware of FASD and how do we teach them to act properly?

3. And even if they have both the awareness and the intelligence, does it always prevent occurring FASD?

***First of all, FASD as the name implies is a spectrum of complex disorders with multifaceted aetiology. Whether a baby is born with FASD is determined by multitude of factors that are not limited to genetics, epigenetics (beyond genetics such as DNA methylation), environment (mother’s womb is the immediate environment for a fetus), time during the pregnancy (which trimester), amount of alcohol consumed, types of alcohol, how many times alcohol was consumed, then and the list goes on…. So acting intelligently on the fact that alcohol consumption may harm the baby may not be 100% successful. Yet prevention is much better than suffering, isn’t it?

***Another facet of awareness is once a child is diagnosed if having FASD, what can parents, family and caregivers do? Do they have the knowledge and capability to seek help, access to resources and continue treatment and intervention programs. Moreover, how the child is able to manage his/her health situation. Are they aware of what is happening? Are they able to access proper information and take charge or at least contribute to their own care?

***The Health care professionals and researchers who are trying to help these families by all means, are they aware of the emotional burden these families carry, and the impact of power imbalances occurung at hospitals, clinics, support programs and research. Even when they are aware,?how many of them are willing to act empathically and listen to the voices of patients and families?

***Another significant facet I see as awareness is the ‘social awareness of FASD’ as a ‘disability’ and development of stigma.

Collectively, main points that people, parents, patients, caregivers, healthcare professionals, researchers and community should be ‘aware’ of and ‘act upon’ in my opinion are:

• What is FASD?

• What are the myths and truths about alcohol consumption and FASD

• How to prevent FASD?

• Alcohol limits, damage done by alcohol to both the mother and the fetus

• What should you do if your child has FASD?

• How can you communicate with FASD patients

• What is the life of FASD patients and families look like?

• What are their actual needs?

• How should researchers and healthcare professionals communicate with them to provide best care and support ?

• How to engage FASD patients and families in treatments, intervention, education programs or research?

• How can we reduce the stigma around FASD?

• How do we empower FASD patients to live a normal life?

There are many research and support programs all around the world have found answers to many of the aforementioned questions. But considering the stigma, life challenges and many other issues still ongoing, it appears we are still missing something in our awareness concepts.

Please provide your thoughts and every little bit of knowledge will help to prevent FASD occurance and help the patients and their families.

Vichy Liyanage

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