The Importance and Significance of the Diagnosis: the personal testimony of R.J. Formanek

1. The Importance and Significance of the Diagnosis: the personal testimony of R.J. Formanek R.J. Formanek Admin· January 27 at 8:25 PM The Monster Under The Bed. My diagnosis came at 47 after a lifetime of hit and miss, not really understanding people around me and considering myself as an alien in a strange land. I had a career, relationships, family of my own... but I kept ending up at a therapist trying vainly to understand. While I did do any number of things that neurotypical people take as 'adult', I had no real understanding.... just doing what I was supposed to do, in essence. I could get along, but always felt out of sync. Throughout the years I had been placed on many, many medications to try and 'even things out' for me... but they only added to the problems. They addressed symptoms (sometimes initially minor) and caused a zombie like state that was so frustrating I wanted to die. A few times. The problem is, you can't medicate the way my brain is formed. I was surviving... getting by, but not living my best life. Not having a diagnosis always left me wondering... "what's wrong with me?" It was obvious I was very different... but no answers. For years. I had accepted (if you can accept what you can not understand) that I was an 'odd duck' and just would never fit in with humans.

2. I told people I was raised by wolves, and left it at that. "Nothing to see here..." I did things I did not understand, and I had to own that... because when it came down to it- they were the things I did. But I did not understand WHY. Why did I not sleep? Why did I need specific things in my life to make me comfortable enough to calm down? Why? I felt 'broken', damaged.... a mistake. So, when I did get my diagnosis I originally just filed it with all the others... but eventually I started to read up on FASD. That's when I started to make sense... to me! That's when I understood that my brain works differently than most other people, they don't see or feel the way I do, nor do I feel like them. I knew I had talents others did not have, and I also knew I struggled with things like simple math, and I had spent my life doing things I was good at... and avoiding things I sucked at. The diagnosis game me 'permission' to forgive myself. It did not absolve me of my faults, but it did put into focus that I had been blaming myself for years for something I could not help. Any more than I can help the colour of my eyes. This is how I was born. And that was the best feeling ever... to know that I am not broken, but I AM wildly different and highly original. I am my own person. Good, bad or otherwise.... I am just me. And I'm OK.

3. I like to tell people that when you are a kid often you fear the invisible monster under the bed. You can't see or hear it.. but you KNOW it's there... waiting for you. Every single night. The Monster. But getting the FASD diagnosis named that monster. It was no longer an invisible monster waiting to get me... It's name is FASD, and it's something that happens when alcohol is introduced during pregnancy. It's our society, the way we are that made me the way I am. Once the monster is named, it loses much of it's power. That's what an adult diagnosis of FASD did for me... it let me live my own life. And THAT makes ALL the difference. Comment. Thank you R.J. for being so brave. In spite of the importance of an early diagnosis the rate of diagnosis in infants, children, youths and adults remains appallingly low. The following stress the importance of an early diagnosis. 1-The 1996 Washington Report. http://lib.adai.uw.edu/pubs/bk2698.pdf 2- The Parliament of the Commonwealth of Australia. FASD: The Hidden Harm [Chapter 4- Diagnosis] Canberra, November 2012 3- Government of Canada FASD 2007 Her Majesty the Queen in Right of Canada, 2007 • Cat. HP35-4/2007

4. [note- subsequent publications do not emphasize the importance of an early diagnosis ] 4- Diagnosing fetal alcohol spectrum disorder: History, challenges and future directions. DOI:10.1093/pch/14.4.231 5- Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. DOI: 10.1097/00004703-200408000-00002 6- Early Intervention for Children with Fetal Alcohol Spectrum Disorders. Encyclopedia on Early Childhood Development. 7- ADULTS WITH FETAL ALCOHOL SPECTRUM DISORDER: FACTORS ASSOCIATED WITH POSITIVE OUTCOMES AND CONTACT WITH THE CRIMINAL JUSTICE SYSTEM J Popul Ther Clin Pharmacol Vol 23 (1):e37-e52; March 9, 2016 8- A Survey of Health Care Professionals’ Knowledge and Experience of Foetal Alcohol Spectrum Disorder and Alcohol Use in Pregnancy. doi: 10.1177/1179558119838872