FASD Awareness Month: A Conversation with Paul Stevenson

Author Bio

This article is written by Genius Within Community Manager Helen Doyle. Helen is a subject matter specialist writing about neurodiversity and disability inclusion both from the perspective of her own lived experience and collaborating with the experts on our team to cover a wide variety of topics and views. Today she interviews Paul Stevenson about Foetal Alcohol Spectrum Disorder (FASD).

For FASD Awareness Month, we spoke with Paul Stevenson, Genius Within Ambassador and father of two children with Foetal Alcohol Spectrum Disorder (FASD), about what greater awareness really needs to mean for individuals and families. Drawing on his own experience, Paul reflects on the importance of honest information, compassionate support and listening to the voices of people with FASD, while recognising both the challenges they may face and the strengths they bring.

Paul: “As a father of two adopted children affected by FASD, I know it isn’t always an easy journey.

We were told that it could play a part in our boys’ lives, but we were given very little guidance about what that might actually mean or how significantly it could affect them.

We wondered whether love, stability and guidance would make everything better, or whether they might need support throughout their lives.

Love and a nurturing home matter enormously, but FASD is a lifelong neurodevelopmental condition. Families also need knowledge, understanding and access to the right professional support.”

Paul: “By the time I truly understood FASD, it felt as though we were already playing catch-up.

That’s why awareness is particularly important throughout the care system and for foster carers, adoptive parents and special guardians. Families need honest information and preparation so they can understand a child’s individual needs, respond appropriately and help them thrive.

But awareness cannot just be about families and professionals. Most importantly, it must include listening to people who live with FASD themselves.”

Paul: “People with FASD can experience challenges in areas including education, employment, relationships and independent living. They can also face misunderstanding and judgement, as well as the difficult decision of whether to disclose a condition linked to circumstances over which they had absolutely no control.

People living with FASD deserve to have their voices heard, their strengths recognised and their dignity respected.

Discussing the challenges associated with Foetal Alcohol Spectrum Disorder should never take away someone’s hope or potential, and receiving support should never depend on a person having to explain private details about how their condition developed.”

Paul: “Prevention is important. People need clear, consistent and compassionate information about the risks of drinking alcohol during pregnancy so that they can make informed choices.

But prevention must never become blame.

For me, the awareness month has more than one story to tell. It is about preventing future harm, preparing and supporting families, and improving understanding and support for people living with FASD today.”

Paul: “That everyone has a part to play.

Parenting is a lifelong journey, and families need to be properly informed, equipped and supported. At the same time, people living with the condition need understanding, acceptance and meaningful support throughout their lives.

Ultimately, awareness should be about prevention, preparation, understanding, acceptance and dignity, while recognising the strengths and potential of every person with FASD.”

September is FASD Awareness Month, with International FASD Day marked on 9 September. The ninth day of the ninth month symbolises the nine months of pregnancy and provides an opportunity to raise awareness of FASD, prevention and the experiences of people living with the condition.

Find out more about FASD Awareness Month through National FASD

To read more articles from Paul Stevenson click here.

To learn more about neurodiversity click here.