This is the background - FASD stands for Fetal Alcohol Spectrum Disorder, a lifelong severe neurodevelopmental condition caused by exposure to alcohol while in the womb. If misunderstood and unsupported, those with the condition face huge barriers in life that impact achievement and wellbeing. FASD also impacts the people they live with and should impact every person in teams around them yet unfortunately in many cases they’ve never even heard of it.
For all of the time that I have known about FASD, September 9th has been marked as International FASD Awareness Day. More recently, the whole of September is FASD Awareness Month, BUT for people with FASD, each and every day is impacted by their hidden disability.
Although the cause of FASD is the same, the way that it presents varies from individual to individual and changes as they get older. FASD does really grow up, and if you have met one person with FASD, then you really only have met one person who has FASD.
FASD is the largest preventable neurodevelopmental condition in the UK and globally. It impacts communities wherever alcohol is consumed during pregnancy. Sadly, the UK is recognised as the 4th highest country for the incidence of alcohol exposed pregnancies in the world.
FASD isn’t rare; the latest UK research indicates that between 2% and 4% of the population has been impacted, but most people have never heard of it, and at the time of writing well over 90% of those who may have FASD have never had an assessment to find out.
The diagnosis is really important; it's really not just another label. Again, UK research shows that only with FASD-informed and appropriate reasonable adjustments can optimal progress be made by individuals with the condition. It’s not enough to use strategies that are suggested for other conditions that can look like FASD. If the strategies aren’t FASD-informed, then the results will not be as effective as expected and by implication, wellbeing is poorer. The foundation of FASD is an organically damaged brain, and this happens before birth, but the effects last a lifetime.
It's all too easy to point fingers of blame about who is responsible for people having FASD, but it's counterproductive.
When alcohol has impacted the body and brain in the womb, then it can’t be undone. The energy and emotion needs to be put into supporting the person who has been affected.
Secondly, it's misguided; no woman drinks to harm their unborn child. Many of us still don’t know the risks posed by alcohol during pregnancy because the public health messaging has been extremely poor and the relationship that society has with alcohol is particularly complicated.
The fact that babies are still being born today with FASD reflects badly on the whole of society.
Now FASD has grown up in the UK. We have come a long way from the 1970’s when a leading drink brand sponsored the British Medical Association's antenatal advice booklets – yes, they really did! Yet we still have a long way to go. In England, exactly nothing has been spent by the government since 2016 on public health messaging about the chief medical officer’s guidance that the only way to avoid the risk of FASD is not to drink alcohol when you are pregnant or could become pregnant.
This is sound advice, but not as easy to achieve as it is to type. Nearly half of first pregnancies are unplanned, and then you can’t change social habits until you know that there is a pregnancy. The messaging about the risks of alcohol during pregnancy is not as well communicated as those associated with smoking, domestic violence, soft cheese, pâté and eggs etc.
In some cases, the risk is not communicated at all. FASD Awareness training doesn’t currently feature in the mandatory training for many medical professionals or early years practitioners, or teachers, or social workers – well, anyone. Unless they come into contact with someone with FASD, it’s not a feature of professional development. If that is the case, the light bulb moment is that they realise that they have been working with many more people who have FASD.
Prenatal alcohol exposure can impact anything that is happening in the womb. In some cases, the physical development of the body; in all cases of someone with FASD, how the brain develops and is wired.
People with FASD can often experience difficulties in dealing with information. They may find it hard to translate hearing into doing, thinking into saying, reading into speaking or feelings into words. They may also have difficulty in applying specific learning to new experiences or situations, recalling past experiences and perceiving similarities and differences. This means they may not be able to see patterns, predict events or make judgments.
Since 2022, in the UK, a diagnosis of “FASD is made only when there is evidence of pervasive and long-standing brain dysfunction, which is defined by severe impairment in three of more of the following neurodevelopmental areas of assessment: motor skills, neuroanatomy/neurophysiology’ cognition, language, academic achievement, memory, attention, executive function, including impulse control and hyperactivity, affect regulation, and adaptive behaviour, social skills or social communication.”
That’s the starting point: it changes, develops and grows up with the child who will in time become an adult. We have found that out.
My family growing up with FASD – It’s been quite a journey. Until recently, my wife, Maureen, and I had fostered for over 30 years. In September 2003, we were joined by Georgia (for one night only - we are over 8,400 nights in now). In January 2004, her sister Jody came to live with us and in 2009 an unrelated young man, Callum, came to share our lives.
Initially they were fostered; in each case, we obtained a special guardianship order to remove them from a care system that wasn’t working for them. All are now young adults, all still live with us, all have FASD and all contribute to national training and publications on FASD, if you have researched FASD them, you have possibly already met them, but that has really jumped well ahead.
In that time, we fostered nearly 50 young people for periods of their lives and most, if not all, were affected by prenatal alcohol exposure. Going back to around 2005, and after a couple of years of therapeutic fostering, the girls weren’t making the progress that anyone expected of us. At one of their medicals, the doctor said, “Just find out what Mum was drinking when she was pregnant.” As if it was that easy.
On that basis I attended one of the only FASD training sessions in the country that year. Even at that time, the trainers were parents of children who had FASD, and my eyes were opened.
Based on what I had learnt, we asked our then GP for a pathway for an assessment for Georgia. He didn’t have a clue what FASD was, how it affected people or where to go for a diagnosis. I did my best to educate him and access a diagnosis, but we didn’t get that far before I changed jobs and we moved house.
That’s where our luck changed. Our new GP had a child who had FASD, and the head of the local primary school was also a parent of a child with FASD. For us, the battles that we were having just to get professionals to understand suddenly became much smaller.
BUT moving forward, how an individual with FASD grows up should not be down to luck; however, sadly, all too often it still is. This has to change, and we’ll see how far we have come over the course of these posts.
One of the vital parts of obtaining a diagnosis is having evidence of prenatal alcohol exposure. Often this is difficult as there remains a huge stigma associated with alcohol in the UK. That evidence doesn’t need to be from medical or social work reports at the time of pregnancy. Although it can be, for us, that evidence came from chats that we had with both birth mums about their lives when we were taking the children to contact. Information that mum would never give to social workers who were assessing their parenting capability. That one bit of information is vital to get the correct support for someone who may have FASD, and if we are honest as a nation drinking during pregnancy isn’t rare: it’s over twice as common as smoking during pregnancy, with over 4 in 10 pregnant women drinking at least one alcoholic drink.
Now my children’s stories are their own to tell and in time they will, but some broad-brush strokes to set the scene–
If you can find their strengths, support and scaffold them, then they can and do achieve as everyone else can. In the real world, that has to be more than just the scaffolding and support of parents and family; society has a role, especially as they grow up to be adults. So, the downside and occasionally, as I don’t want to overplay this aspect, there have been challenges
Has our married life played out as we planned it? No, but then can any married couple claim that it has?
As parents of children who have grown into adults with FASD, we can say it can be emotional and tiring, sometimes very tiring, but for us things changed, and as the children better understood their hidden disabilities, things in some ways have become slightly easier.
The frustrations and challenges, then and now, do not come from the young people themselves, but from the lack of support and understanding among those around them. They should know better. They are real, absorbing huge amounts of time and energy, and it should not be this hard. Some of this is about FASD, but some—perhaps more—is due to the state of our public services. I’ll analyse the state of play regarding FASD in our local public services in later blogs.
In one of the first UK books on FASD published in 2014 Maureen described caring for our children with FASD as being one of the hardest tasks she had ever done and that was from someone who had always worked in children’s residential care. We have all learnt a lot since then about how to better meet the different needs of the people who live with us.
When it comes to parenting, caring for or supporting children who are growing up with FASD, there are a great deal of positives, and we must not lose sight of the positive things that happen every day or week. It is easy to miss them. We are 23 years in, and we couldn’t be if there weren’t hundreds of positive experiences. We are extremely proud of our children, what they have become and what they understand of how they can best function in a hostile environment.
The way that they understand what others need to know about FASD has all been shared with others via magazine articles, videos, webinars, training for all kinds of agencies. With patience and the right support, things work really well.
Our young people have experienced the joy of a sister’s wedding this year, where they were the bridesmaids and groomsmen, as well as always looking after their little nieces. Family holidays in the UK and visits abroad are now becoming less frequent as they can manage them themselves. Birthdays, Halloween and Christmas, trips to the cinema, restaurants, etc. I could go on. The normal things that make a family.
We have co-ordinated the Peterborough and Cambridgeshire Family FASD Support Group for years. That too has grown. From a couple of families meeting in a church hall to a membership of over 130 people (in an area where there are no pathways to access a diagnosis of FASD). We meet face to face three times a month in three locations across the county and lobby as hard as we can to make a positive local change as far as living with FASD is concerned, but more of that later.
Our children are 27, 24 & 18 now, and there have been times when we needed to pick and choose what we did. One of us is doing something different with one of the children. We still can’t do too much in a day because if we overload their system, we can still be asking for trouble, but we know them well enough to accommodate their needs… well 95% of the time.
We are still learning and every day is different. The most important thing is listening to what people with FASD say.
Blog 2 later in the month will look at the way that living with people who have FASD has shaped my professional career plan. Following that, I will drill down into what should be happening in our communities and what is actually happening, using Peterborough and Cambridgeshire as an example.
If you have made it this far, well done!
Thanks to Alice for her critical analysis of what I have written, however these are my own honest opinions based on the real-life experiences in one family. I haven’t included the sources of things that I have written, but they exist. I am more than happy to supply them or try to answer any questions that you have just message me.
Brian Roberts September 2026
