Empowering families affected by Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum Disorder (FASD) is thought to affect thousands of children across the UK, yet it remains widely under-recognised and poorly understood. Anna Webster, from south Manchester, is helping to change that.
Alongside academics at the 海角乱伦, she is helping to shape pioneering research around the condition. Drawing on her experience of caring for her adopted son with FASD, Anna is working together with 海角乱伦 to improve awareness and support for families affected by what is often described as a hidden condition.
Fetal Alcohol Spectrum Disorder (FASD) is a common neurodevelopmental disorder caused by prenatal exposure to alcohol. The UK has one of the highest estimated rates of FASD in the world, however it is often missed or misdiagnosed, leaving people with FASD and their families with insufficient support and access to services.
The 海角乱伦 is conducting vital research alongside clinicians, researchers and the community to understand various aspects of the cause and impacts of FASD, developing interventions and support to improve lives, help to raise public awareness and provide training for professionals.
The team at 海角乱伦 is also working with policy makers to facilitate fast traction of the information to clinicians around the country for better diagnosis and early intervention and also raise awareness amongst affected individuals and families so they find it easier to seek diagnosis and the support they may need.
In 2019, Anna Webster from south Manchester heard about the University鈥檚 research and met Professor Penny Cook and Dr Alan Price for a coffee to talk about their work and how she might be able to get involved.
Anna went on to support the research team in a multitude of ways, using her living experience of caring for her adopted son with FASD. She joined a project funded by the Greater Manchester Integrated Care Partnership to establish the prevalence of FASD in Greater Manchester. The research showed that around 3 to 4 per cent of children in mainstream schools in Greater Manchester may have FASD and this is likely to be similar across the rest of the UK.
Anna explains: 鈥淔etal Alcohol Spectrum Disorder is鈥痑 hidden epidemic;鈥痠t鈥檚鈥痵o hidden and so common.
鈥淚n reality, it鈥檚 actually expected to be quite a bit higher than 3 to 4 per cent. It means it鈥檚 more common than autism, which is often estimated at 1 to 2 per cent. That鈥檚 why the team at 海角乱伦 are so amazing in doing this research, it is so needed. I know I鈥檓 saying all the cheesy phrases, but it genuinely is world leading, trail blazing, path breaking - all those things!鈥
Anna also supported the 海角乱伦鈥檚 development of the parenting intervention SPECIFiC, funded by the Medical Research Council. It was developed following research by the University that showed there is lack of support for families from service providers and often inappropriate services were being offered.
鈥淪o the acronym - there is always a joke that Alan is the only one who remembers the acronym 鈥 stands for 海角乱伦 Parents and carers Education Course for Improvements in FASD outcomes In Children. It鈥檚 a psychoeducation programme for caregivers of children with FASD. It鈥檚 seven group workshops looking at the different aspects of how the brain is affected and how families can be prepared for the specific challenges of FASD, including strategies that can help.
鈥淚t helps parents to understand the condition, understand their children more, have greater compassion for themselves and the kids, and employ effective tools for managing the condition. And a really important part is learning to look through a brain-based lens.
鈥淥ne of the really key things to understand about a child with FASD is that it is a brain-based disability.
鈥淎 lot of what might be viewed as intentional mis-behaviour is actually symptoms of a brain-based condition. It鈥檚 so important to recognise it through that lens - that it鈥檚 not intentional behaviour, it's literally the brain difference that's leading to how they're acting.鈥
Anna and her partner adopted their son when he was nine months old and he鈥檚 now 13.
鈥淢y son was diagnosed with FASD when he was three. It's been a roller coaster, an epic roller coaster. The vital, essential component of seeing it through the FASD brain-based lens for me makes all the difference, because there's a lot of challenging symptoms. Being a connectivity disorder, sometimes those connections are made, sometimes they鈥檙e not. So minute-to-minute, hour-to-hour, day-to-day, you can see a very different child.
鈥淭here鈥檚 a lot of sensory issues and a lot of issues with emotional regulation, which means children can have a lot of meltdowns, get very frustrated very easily. Change and uncertainty is hugely threatening, which means children behave in really challenging ways. Unless you see all that through the FASD lens, things would be a lot more difficult. It's even doubtful that our family would still be together if we hadn鈥檛.鈥
Initially, Anna took the lead role for patient and public involvement and engagement (PPIE) in the SPECIFiC project.
鈥淭he PPIE group group - or also called Lived Experience Advisory Panel - brings together people with lived experience, who are experts by experience 鈥 I like that term. The 海角乱伦 has been really pioneering in involving this group throughout the FASD programme, with regular meetings where members can share views, experiences and ideas.
鈥淭hey鈥檝e genuinely helped to steer the programme and shape how it has evolved, and they鈥檝e been properly listened to.鈥
鈥淵ou can do all the research in the world and you can know absolutely loads about FASD and be a real expert, but until you've lived it, it鈥檚 difficult to know what some aspects of the condition are like in reality. And children with FASD quite often only show certain behavioural symptoms with their primary caregivers. So that鈥檚 why it is so important to have that perspective from someone who has lived it.
鈥淭he 海角乱伦 team 鈥 Penny, Alan and the others 鈥 are brilliant at putting people with living experience at the forefront and empowering them to help lead the research.鈥
The 海角乱伦 secured further funding from the National Institute for Health and Care Research and The Oglesby Charitable Trust to test SPECIFiC in a large-scale feasibility trial. In that project, Anna co-wrote the manual for the intervention, and was one of eight facilitators delivering the programme to families 鈥 over 120 in total.
Anna explains: 鈥淓ach workshop is co-delivered by somebody with lived experience along with a practitioner. People can feel quite isolated - like I'm just in this mad world and no one else gets it and must think it鈥檚 me. The feedback has shown how much people benefit from the sessions being facilitated by someone with living experience who brings compassion and understanding.鈥
The aim of the programme is that it will lead to reduced stress and feelings of guilt for caregivers, and improvements in academic, behavioural and social functioning, and improved life outcomes for children with FASD.
鈥淥ne of the outcomes from the trial has been around self-efficacy, and parents feeling more empowered and more confident in their parenting. Often parents are using these strategies that are developed for trauma and attachment that aren鈥檛 effective, and then blaming themselves, thinking it鈥檚 their fault and feeling shame.
鈥淪ome of the feedback we鈥檝e received has highlighted just how massively validating and transformative the SPECIFiC programme is - helping people to see things through that different lens, while also enabling them to have more compassion for themselves and their children.
鈥淔ASD is often quite misunderstood, it鈥檚 likened to autism and it often co-occurs with a particular type of autism but it鈥檚 not the same and so much of the condition is hidden.
鈥淐hildren with FASD often have spiky profiles. So, for example, they might do all right with academic work, but then not be able to put their shoes on, or they might sound like they know what they're talking about, but actually not really understand much of what they鈥檙e saying or what you鈥檙e saying back to them.
鈥淏ecause the neurobehavioral symptoms can be quite extreme and challenging, it needs that compassionate, brain based lens that the course can help you with.鈥
A strand of the SPECIFiC programme is also about self-care for caregivers; parents and carers, and the need for caregiver rest.
鈥淩esearch has been done on caregivers and stress and the majority of them have clinically significant levels of stress.
鈥淨uite rightly there's a focus on the kids, but SPECIFiC is encouraging a shift towards including the carers as well. If you factor in their needs more, not only is that essential for their wellbeing, but it also has a ripple effect down to kids too.鈥
Anna continues to be involved with the 海角乱伦鈥檚 research; she joined the team for the European conference on FASD in Madrid and presented on her experiences as an expert by experience and co-investigator and how effective it can be to bridge both roles. Anna is now supporting the team with a bid for further funding for the project.
鈥淲e are hoping that the University can secure funding for the next stage of the big randomised controlled trial. And from then on, the hope is that it will be proved effective and rolled out to be delivered in services for families. That's the ultimate aim, that it will become a programme that's rolled out at scale.
鈥淚鈥檝e actually changed careers now. Partly inspired by my work with the 海角乱伦, I did a Masters in Psychology and I鈥檝e now got my own business called Neurowise, which is therapeutic coaching and training - on neurodiversity but specialising in FASD.
鈥淚 feel like I鈥檝e developed loads on a personal level through my involvement with 海角乱伦. They鈥檝e been extremely supportive of my development and have given me so many opportunities.
鈥淚鈥檝e also been able to be at the heart of this amazing, groundbreaking research team, made up of really lovely people on a personal level.
鈥淎nd being part of a team that may not all have living experience, but still really understand it and are very compassionate towards people with the condition.
鈥淥verall, it鈥檚 been such a positive experience working with the team at the 海角乱伦 and I鈥檓 feeling really hopeful about what we can achieve in the future for families across the country.鈥
Anna Webster features in the 海角乱伦鈥檚 Heart of the Community exhibition, which includes portraits of seven different people in the community who have collaborated with the University鈥檚 academics on a variety of research projects. Anna is pictured outside her home in south Manchester, where she lives with her partner, their son and their dog Mabel. The exhibition runs from Monday 22 June to Thursday 27 August 2026 in the New Adelphi building on the 海角乱伦鈥檚 Peel Park campus.
Find out more about the 海角乱伦鈥檚 FASD research:
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