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National Organisation for FASD Australia

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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.

A Sister’s Story

My brother and I were adopted into a loving family over 50 years ago. My brother is 52 years old and has caused our family grief and heartbreak throughout his life.  Even as a 10-year-old, alcohol held such an allure for him he was unable to reject it in any situation. My earliest memories are of his steadfast determination to drink a little beer or wine when my parents had some. That wilful nature carried through to his relentless requests for toys – resulting in many meltdowns in shops. He seemed always difficult to manage and impossible to discipline.

He was adopted at 2 weeks old, my parents had no knowledge of his history or that of his birth parents. As he grew, he was always the kid labelled unmanageable and wild. Teachers, babysitters, coaches all struggled with his behaviour and my parents tried numerous diets and therapies to help him cope. He was treated for hyperactivity, and like so many, was prescribed Ritalin for many years.  He also suffered from various skin complaints including eczema and was allergic to a vast array of food.

The stories of the difficulties he went through, and put the family through, are too numerous to recount. Suffice to say the police were called many times. Once he almost burned down my parent’s house with a cigarette. At 11, he was discovered near death after finding and drinking a large bottle of whisky, he passed out alone and exposed to the elements for hours. The doctors told my father he was close to death when he was found and this memory created a scar which has never healed for my father.

As his sister, I was less than sympathetic to his alcohol dependency, lack of school progress and most of all, the tremendous lengths my parents went through to try to support him.  There was family counselling, special schools, doctors – they even put double locks on the door and implemented the scared straight methodology – he was locked out of the house if he came home after his curfew or he came home affected by drugs or alcohol.

Nothing worked. He would sit stone-faced when confronted with his poor behaviour and then he would make excuses and blame others. He seemed incapable of taking personal responsibility.

My own childhood was greatly impacted by the dynamics in the house as from my perspective he was the recipient of all of the attention. I was left to my own devices and allowed to get into more trouble as a teenager because my parents paid less attention to me. It felt like they didn’t care because I wasn’t as ‘bad’ as he was. This felt for me like a double abandonment because I was adopted too. I felt that I grew up alone, like an only child in the middle of a circus. These circumstances left me angry and resentful. From a sister’s viewpoint my brother was so difficult to understand and my parents have struggled and worried and done their best for him over all this time. He seemed so ungrateful.

Somehow along the way we heard about Fetal Alcohol Spectrum Disorder (FASD), but we didn’t know what the impact was, we didn’t know it could be professionally diagnosed and that this information would have helped my brother. We didn’t know that what we saw as intentional negative behaviours were the result of prenatal brain damage. It wasn’t until I was in my early 50’s and I met a wonderful woman with extensive knowledge of FASD that I understood. Everything matched and made sense. She explained his behaviour and how it was caused by the damage done to his brain. It was a fundamental shift for me to realise that he was born this way and to see his choices, his decisions and his behaviours as the result of his prenatal exposure to alcohol. I can honestly say I have found understanding and forgiveness towards both my brother and my parents. They did their best with the hand they were dealt.

“It was a fundamental shift for me to realise that he was born this way and to see his choices, his decisions and his behaviours as the result of his prenatal exposure to alcohol.”

I now know that in 1969 when he was born, diagnostic tools didn’t exist to identify FASD. I wonder what would have happened if his condition was recognised and he had been able to access specific treatment and behaviour support to help him succeed. I wonder how different his life might have been if we had understood that he wasn’t making choices that he could control. Because he is 52, I fear the die is cast and I will be responsible for him long after my parents pass on. We have set up the will so there are provisions for him, and now that I know more, I’m not fooling myself into thinking these will be enough to keep him safe.

Overall, I am grateful to have met my FASD expert who helped me contextualize and forgive. The home is more peaceful now that I have travelled to acceptance and I can only hope that over the next few decades we will be able to access more advances and face less stigma around FASD. I hope we can open up treatment options and help my brother get the supports he needs for his disability.

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