I recently had the opportunity to attend the conference "FASD in the UK: Building on 20 years of progress". 

Listening to all the speakers and presenters, as a person living with FASD I wanted to reflect on what really stuck out for me. 

The first thing I noted was when any of the Presenters spoke about anyone living with FASD not once did I hear a negative word used. They referred to outcomes and behaviours that can be caused by the way a person living with FASD is treated, but never the person with FASD being the negative.

Secondly, not once did I hear the phrase ‘deliberately choosing to behave this way’, instead I heard words like ‘hope’, ‘succeeding’ and ‘inspirational’, as well as what we can do and what we can learn - just by positive interactions with individuals. These individuals are the ones teaching: doctors, educators, social workers etc. The overall take away was that the lived experiences and knowing the future isn't just prevention but also supporting the adults with FASD.

It was genuinely exciting to see how much progress the UK has made and I can see how the blocks they are building are beginning to take a similar shape in ireland. Ireland could really benefit from reviewing and understanding these research and studies and implement services that work.

The work that is being done to make diagnosis more straightforward and cost effective as well as speeding up the process of getting a diagnosis is really exciting to learn. The work that is being done by Utilising 3D Imaging and Machine Learning for Diagnostic Assessment presented by Dr Mike Suttie, University of Oxford makes me genuinely hopeful that families and individuals will be able to access a diagnosis more easily.



Another presentation that really stuck with me and struck a chord with was a presentation on "Implications of FASD for the Criminal Justice System – David Gilbert, University of Salford" and it shocked me just how vulnerable we truly are when we are put in a situation where our needs aren't being heard or met. It seems it is too easy for us to be put in a situation where we accept responsibility for a crime we didn't commit all because our developmental dysmaturity really comes into play when we don't understand what is actually being asked. This can very often be used against us in the justice system that leads to individuals being charged and sometimes imprisoned for a crime they didn't commit. This is mainly due to a lack of understand of our disability and how to ask questions in the right format for individuals to understand. For me personally it made me appreciate that I could potentially also fall victim to that, and it’s so important that this study really need to be seriously considered by those in the criminal justice system. The steps need be put in place so that Individuals with FASD don't get punished for a crime they didn't commit.

I think a highlight for everyone who attended the conference was to hear of the lived experience and their perspectives on what changes they want to see happen. 20 years ago individuals with FASD wouldn’t have been invited or even been able to represent themselves at conferences along with researchers and doctors, but at Salford individuals with the lived experiences took centre stage and they really advocated for the ‘Nothing About Us Without Us’ movement. We want to be involved and be informed and also we want people to come to us if people have questions instead of going over our heads. 

The fact that doctors and researchers were acknowledging the fact that they learn so much from working with and alongside individuals with FASD and that they learn so much from just listening to what it is like to have that lived experience really shows how far everyone in the FASD field has come. 

The ‘FASD Manifesto’ really embraces that individuals want to be respected and they want their voices and stories to be heard and listened to and for society to take what they say seriously and learn from them so that life doesn’t have to be so difficult for everyone.