“The National Organisation for FASD is pleased to announce the launch of an innovative new website designed to help young people with Fetal Alcohol Spectrum Disorder in the UK understand and own the diagnosis. Created with input from dozens of individuals with FASD, their families, and a team of some of the UK’s leading FASD medical and educational experts, this website breaks new ground.

It is designed in collaboration with people with FASD to allow children and young people and those supporting them to investigate the condition at their pace and level of understanding. Interactive games allow people to understand what helps make life easier and a developing bank of personal stories and experiences shows users that there are many diverse people living with FASD in the UK.

It will be the basis of a new 3-day training for practitioners working with young people to help them take on board their diagnosis and strategies that can help. It includes an interactive comic, “My Brain, Me and FASD” that takes the user on a journey of understanding, created with one of the country’s leading charity e-learning experts, the Little Man Project.

National FASD developed this website as part of a “Me and My FASD toolkit.” It’s a central part of a partnership project between Seashell and National FASD, funded by the Department of Health through its first-ever grant programme for FASD. Other parts of the project include co-development of “Best Practice in FASD Training” and “FASD: UK Preferred Language Guide,” and a one-day “Introduction to Supporting Children and Young People with FASD” training.

A committee of adults and young adults with FASD advise on this project. In addition, more than 70 young people with FASD provided input into the development of resources on the website, including “Walk Along With Me” and “I Get Through,” two new songs created for the project. A new board game is also underway. The committee chose to call the game, “The Misunderstoods: A Game of Life with FASD.”

These young people want the world to understand FASD. Their optimism refutes professionals who say that because FASD is lifelong brain damage, it doesn’t help to have the diagnosis. People with FASD disagree. They want to empower others like them, hopefully to avoid some of the challenges many of them have faced and to have brighter futures.”

Find more from National Organisation for FASD (UK, November 2020)


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