What an incredible two weeks it’s been in the world of FASD. First the publication of the long-awaited NICE quality standards for England and Wales, then the launch of a major new report, The Time is Now, resulting from nine roundtables with over 60 participants including paediatricians, psychiatrists, GPs, commissioners, public health experts, researchers, and leaders from the third sector. 

As a parent of three amazing, funny, creative young adopted people, all with a history of prenatal alcohol exposure, I understand the daily challenges of the families supported by FASD Hub Scotland and many other similar organisations across the UK. My youngest, who has an FASD diagnosis, has been my greatest teacher. 

For me, being part of the Time is Now roundtables and the final event were a time of great personal growth. Hearing from my follow advocates/parents-carers with lived experience and adults with FASD is always inspiring and humbling. Learning from professional colleagues, many of whom have been working within the field of FASD for over two decades, has helped to further deepen my knowledge. At the launch event I felt privileged to be asked to speak to the report’s recommendation that people with lived experience need to be at the core of planning services to support them.

I feel inspired to grow and develop Adoption UK’s FASD service and support more families. I’d like to talk to you about the journey of one family who have been supported by FASD Hub. Their experiences are in many ways typical of the families we support. 

This family didn’t know about prenatal alcohol exposure but were experiencing challenges in parenting their child. Traditional parenting wasn’t working; suggestions from friends and family and professionals just didn’t seem to be meeting the family’s needs. They sought input from paediatricians and attended therapeutic parenting courses, but there were still many challenges and unanswered questions.

Over a period of several years, they went through a series of revolving doors, in and out of different services. They were told their child didn’t meet the criteria for Autism or any other diagnosis. They were offered no other strategies, support, treatment, or care plan. They were left feeling isolated and alone.

Then, through their own research they stumbled upon FASD, which led them to the FASD Hub. They have been able to access our training and one to one Family Support Service. They have gained knowledge and understanding about FASD and how to adjust their expectations of, provide support to and celebrate the strengths of their child. 

Their parent partner has worked with them to provide strategies and view things through a neurobehavioral and FASD lens. It is no understatement to say that it’s been life changing for this family. They recently told me “everything felt as if it was crumbling around us…but through our parent partner’s lived experience of FASD he helped us understand that we were not alone…helped us overcome our grief…[and understand that] our children are hugely gifted, but as a society we need to try harder for them.”

I know just how emotionally and physically draining it can be parenting a child with FASD. Parenting is draining at the best of times, but it’s more than that. It’s the battles we have to fight along the way to ensure our young people get the support they need from health, in education, and for the transition into adulthood. To ensure they can live their best life – after all isn’t that what we all want?

It is recognised that there is currently a limited number of professionals with expert understanding of FASD and experience of diagnosis. The challenge is to upskill the workforce quickly and efficiently to be able to meet the existing need - a need which is only going to gather pace as awareness and understanding of FASD and the impacts of prenatal alcohol exposure increases. 

As services expand, and new organisations and entities enter the field it is critical people with lived experience are at the core of planning and are engaged at all levels.

Stigma has held strong ground in relation to FASD. I think that the root of stigma is fear of the unknown. Reluctance to diagnose is rooted in fear that a diagnosis could do more harm than good. We need professionals to understand the value of a FASD diagnosis and the positive change this can bring – as demonstrated by those with lived experience.

People with lived experience of FASD can bridge the gap between the medical terminology and the symptoms and characteristics that parents and carers see at home, and that the person recognises in themselves. They bring the formulation to life, and peel back the layers of understanding of the condition, and its impacts on the individual, their family, and the wider community. We need to think of them as Experts by Experience and the translators in the room.

FASD is the most common known cause of neurodevelopmental disability, yet it has been the least recognised condition. People with lived experience are the key to giving this condition the visibility and urgency it needs. Now is the time to ensure the lived experience of families like mine, like the family I’ve just talked about, and the thousands of other families across the UK are made central to changes in the way our families are supported. Experts by Experience must be included from theory to practice.

A full interactive copy of the report can be found at by visiting the National Organisation for FASD website. You can watch a recording of the Time Is Now event here.


Aliy Brown

FASD Project Manager – FASD Hub Scotland / FASD Lead - Adoption UK