Is FASD Really invisible?


Most people think of the invisible as something that is not there, something not immediately apparent, or something that we can't see. Still, invisibility could be just a matter of perspective. Many things that we consider invisible are often right before us, so why is it that we don't see them? It may be because we are unaware of them, and our brain cannot see what it doesn't know exists. In this blog post, I want to share a story about it and give you my perspective on what I believe to be invisible. I was 33 years old when I learned about FASD, and it hit me like lightning. At that exact moment when reading about it for the first time, I knew it! I knew I had FASD. There was no doubt in my mind since my mum has struggled with alcoholism her entire life, ever since she was a teenager.


I started reading about it, doing it made me start paying close attention to my body, something it seemed I had never done properly. I was shocked, I lived my entire life without realizing that my little finger (on my right hand) was curved, turned inward. I was surprised. I never noticed it before. And no one else did either all these years, not my parents, teachers, or even my doctors. It seemed genuinely invisible but not because you couldn't see it. Actually, it's quite obvious to me now but it wasn't before, I couldn't see it and people couldn't see it because we were not aware of it and that made it invisible. I was also stunned to know that the effects that alcohol causes to an unborn baby are often overlooked and unknown to most people. It made me wonder how come I had never heard about it before? How come this has never come up in any conversation? Not even on TV? Was FASD invisible too?


I found out that the inward curving of the little finger is a condition called clinodactyly and that it can affect a person's hands and feet development. I suspect to have clinodactyly also on both my little toes. Clinodactyly is present in people with neurodevelopmental disorders, including FASD, and is highly prevalent in people with Down Syndrome. Presenting clinodactyly doesn't necessarily mean that you have FASD (as it could be due to other causes or syndromes). However, it could be a good indication if you suspect you or someone you know may have been prenatally exposed to alcohol.


Alcohol's effects on the brain

Alcohol targets mainly our Central Nervous System (CNS), meaning our brain. The damage and changes that alcohol causes to our brain are not visible because they are functional, not structural. In other words, it disrupts the brain's wiring, not its physical form (in most cases). Suppose you think of our brain as a supercomputer. In that case, alcohol will affect the files and programs, not the hardware, which still looks undamaged from the outside. That's why despite having FASD, our brain will look like any other brain on an MRI scan. The fact that we cannot see the functional changes made to our brain doesn't mean that they are invisible, because they are not. They do show up, they do it in our challenging, radical or illogical behaviours. In our difficulties with learning, memory, and impulse control, amongst many others challenges we face. These functional damages also increase our risk of developing anxiety, depression, and other mental health conditions.


Alcohol's effects on the body

Before talking about alcohol's effects on our bodies, I want to share that I am participating in a selected group of psychologists, psychiatrists, researchers, and other medical professionals in Australia. This group is led by a highly recognized Australian University and supported by the Australian Government. Its goal is to review and update the national guidelines for the official assessment and diagnosis of Fetal Alcohol Spectrum Disorder (FASD) nationwide. I'm proud to be the only person in the group living with FASD. I am fortunate to be part of it since it has allowed me to advocate and tell others about the importance of the body features to be considered, to explain why they should be part of the diagnosis process. Nowadays, only facial features are mainly looked for when we talk about physical characteristics. I believe it's a real shame and a huge lost opportunity since only a small percentage of us with FASD present its facial features (believe to be around 15-20% only).


Despite many of us not presenting the distinctive facial features (smooth philtrum, thin upper lip, upturned nose, flat nasal bridge and midface, epicanthal folds, small palpebral fissures, and small head circumference). I know for sure that we all have physical characteristics and that our FASD shows in our bodies in one way or another. I believe and advocate for them to be looked for and considered during the diagnosis process. If they were, it would be highly beneficial, allowing more people to be properly diagnosed. In my particular case, I also have what is called the "railroad track" on my ears. This is when the outer ear's top part (curve) is underdeveloped, folded over, and parallel to the curve beneath it, it appears like a railroad track. I also have other minor abnormalities in my ears as you can see below.



Something else that caught my attention was finding out that alcohol can severely impact our teeth too, which makes a lot of sense. I have received compliments about my teeth. They do look good now, but I have had many dental problems, including nine teeth taken out, three root canals, three crowns, incrustations and a dental implant (including bone augmentation). I wonder if they were also cause by my FASD.


Conclusion

As many other things in life, perspective can be everything. The things that we see and don't see can depend on it. I agree and disagree when people say that FASD is an invisible disability. I agree as people can't tell, how could they? They cannot look into our brains and see that our wiring has been changed. Instead, they see that we look and sound exactly like everybody else, I get it. But on the other hand, I know that our behaviours are not invisible. That our bodies show specific features and characteristics that are definitely not hidden.


Please comment below or reach out to me at gilberto@wired-differently.com. I'd be very happy to hear your thoughts and comments on this post.


Reach out, if you (or a loved one), like me,

  • Were born with a neurological disorder that makes it hard for you to learn and remember things like the rest of the people.

  • Are living life in a fog.

  • Find it difficult to make sense of things.

  • Worry that you'll never be able to succeed.

  • Are afraid of not being able to achieve the things you want in your life.

You are not alone! I have gone through all that myself, and I can help you succeed the way I did despite your FASD. I have the right tools to make it happen. I'm confident I can help because I have tried and used these tools on my own FASD brain with mind-blowing results. With my help, you will finally understand how your brain works, how it learns, and what works best for you. Get ready to figure your brain out, wow yourself, your friends, and your family. If you are ready and determined to achieve your goals, take the first step by having a chat with me about it.