FASD and Education We know many individuals with FASD face challenges in education. Expand Many children and young people find education to be challenging. Whether it is the environment, transitions, expectations or learning, we have resources to help. Visit our FASD Education area
FASD and Social Work Are you a social worker supporting families who have been impacted by prenatal alcohol exposure (PAE)? Expand FASD stands for Fetal Alcohol Spectrum Disorder. It is the result of an alcohol exposed pregnancy that affects the developing brain and body of an individual before they were born. FASD is a lifelong, neurodevelopmental condition, often referred to as a hidden disability. FASD is a spectrum and each person with FASD is affected differently. Each person with FASD has both strengths and challenges, they and their families need support to learn FASD-informed strategies to help them prosper. When an early diagnosis is made, the right supports are put in place in education, at home and in the workplace, then individuals can succeed and achieve throughout life With early diagnosis, positive relationships and the right supports, individuals can be successful and achieve positive outcomes. As a social worker you have an important role to play in ensuring individuals and families receive the right support, at the right time in the right way. FASD Hub Scotland can support you in doing this. We can provide FASD awareness training social work team and the families you are directly care for and supporting. We run a regular programme of training, check out our training pages for more details. On our FASD Factsheets pages you will find easy to access information which is free to download and share with colleagues or families. Our FASD animation FASD Makes Me, Me is a great way to share the facts about FASD in an easy to understand and friendly way for both children and young people and adults alike. If you are working with a family who you think could benefit from our 1:1 Family Service please contact us via our FASD Helpline, open Tuesday-Friday, 10am to 2.30pm by calling 0300 666 0006 (select option 2). Key facts to know about FASD FASD is a condition that may occur when a foetus is exposed to alcohol prenatally. Prenatal Alcohol Exposure (PAE) can occur at any point during the pregnancy, including before the pregnancy is detected. Alcohol is included within the group of substances called teratogens, or poisons, meaning that it is a substance that can cross to the developing foetus and cause harm at any stage of pregnancy. FASD is the most common known cause of neurodevelopment disability and birth defect in the western world. Within the general population the prevalence of FASD is around 3-5%, meaning that up to 1 in 20 people in Scotland could have FASD. In comparison Autism Spectrum Disorder (ASD) is thought to affect 1 in 94. Some groups are, however, disproportionally affected by FASD including the care-experience community. FASD is a ‘hidden disability’, meaning that you cannot tell by looking at someone whether they have the condition. Around 10% of individuals have specific facial features that are indicative of PAE, these are a thin upper lip, smooth philtrum, and narrow eye opening. The remainder of individuals with a history of PAE do not have these features, which has historically brought challenges for the individual and their families in terms of professionals recognising the impact of PAE. If you would like to understand more about FASD please visit the other areas of our website or get in touch with our team by emailing [email protected]. We are happy to talk about ways we can work together to raise awareness, reduce stigma and remove stigma, and create brighter better futures for everyone.
FASD Community Signposting information to other FASD organisations. Expand The FASD community across the UK and beyond is expanding at a fast and growing pace, which is excellent news for those seeking support as parents/carers and individuals with FASD. FASD Hub Scotland are pleased to be an active member of the FASD UK Alliance which is a coalition of groups and individuals from across the UK who are united together for positive social change for those affected by FASD. You can read more about the alliance and access a list of organisations and contact details FASD Hub Scotland are a member organisation of Embracing Complexity – an organisation who bring together those working to improve the lives of people with neurodevelopmental conditions (NDCs). By thinking differently about how we campaign, fund research, and offer support, we can improve lives faster, more efficiently and more effectively. Find out more about Embracing Complexity
FASD Diagnosis Expand FASD Assessment & Diagnosis Seeking an FASD assessment can feel daunting, partly because of the nature of the process and partly because of the implications a diagnosis may have for you, your family and your child. There can be significant wait times before and during an assessment, and it is not uncommon for parents and carers to feel frustrated by the process. But remember.... You have found your tribe! We have a thriving community of parents and carers who support, empower and encourage each other. We would encourage you to link in with this community by joining our Peer Support Group HERE We’re here to support you! You can call the advice line or email us at any time if you need a listening ear or advice on what to do next. Knowledge is power! The resources listed below contain lots of helpful information to equip you on your journey and arm yourself with the knowledge you need. For those professionals involved in the diagnosis of FASD you can find information and training relevant to you by visiting the Fetal Alcohol Advisory Support & Training (FAAST) Team’s website - https://www.faast.ed.ac.uk/ SIGN 156: website This website gives an introduction to the SIGN 156 (Children and young people exposed prenatally to alcohol) Guidelines and links to further resources SIGN 156 Full Guideline Clinical guidance for those involved in the FASD diagnostic pathway. SIGN FASD Parent and Carer Handbook A must-have resource for families seeking an FASD diagnosis, giving information on who and what the assessment involves. Children’s Neurodevelopmental Pathway – Practice Framework This document set out the measure used in FASD assessment, alongside a number of other neurodevelopmental conditions such as ADHD and Autism. FASD Hub also have a number of factsheets on diagnosis – you can find them here.
FASD Helpline Our helpline is open 4 days a week and provides support and advice to parents and carers across Scotland. Expand Looking for advice or information about FASD? Or maybe a listening ear or to find out more about our FASD Hub services. Our helpline is open to all those in Scotland caring for a child/young person with FASD or a history of prenatal alcohol exposure (PAE). Our friendly and knowledgeable helpline advisors are available Tuesday – Friday, 10am – 2.30pm and you can speak to them by calling 0300 666 0006 (select option 2). Out of hours, you can leave a message or email us at [email protected] and we will get back to you within 2 working days. There’s no such thing as a silly question – we are here to help!
FASD Hub Community Finding a community of people who understand you and get your journey can make all the difference. Find out how to join our community today. Expand At FASD Hub Scotland one of the key aspects of our service is making connections and building community. To support those parenting a loved one with a history of PAE or FASD and Adults with FASD we run and moderate two online communities through closed Facebook groups. Our Peer Support Group provides a closed and safe space for parents and carers to gain peer support, share their journey and knowledge with one another and interact with the Hub team. The group is moderated by members of the Hub team, the FASD Hub Parent Partners and volunteer moderators. Fortnightly a virtual meetup is run, which is open only to those within the group. To ensure the group continues to be a safe and supportive space for peer support, to identify potential sources of help or information we can provide, and to help us get to know our members a little better, we ask anyone who would like to join the group to complete our online registration form before we add them to the group: Join FASD Hub Scotland Peer Support Group If you are an Adult with FASD (aged 17+), and you either have an FASD diagnosis, or would identify as having FASD because of a history of prenatal alcohol exposure you are invited to join the group. The group was launched in May 2021, and established in collaboration with its founding member Carol Hunter, an adult with FASD. Please find details about the group and join through our FASD Hub Scotland Facebook page. “The Adults with FASD Group has identified the gap in support for individuals like me living with FASD. It is not uncommon for the amazing support that is in place for care-experienced people or those living with FASD to stop once we reach a certain age. However, our experiences and barriers do not simply vanish, we still have difficulties to overcome as an adult, which need to be addressed and supported separately to younger individuals. The new group addresses this, with a safe space provided to build up an online community, where experiences can be shared, voices can be heard, and responsive support can be put in place as and where required. I am so pleased to see this finally in place and to have had the opportunity to be involved with the discussions leading up to the new crucial line of support.” We look forward to welcoming you online and getting to know you.
Information and resources Please feel free to download our information flyer about our services and share with your local GP surgery, school, health visitor and social work team. Expand FASD Hub Resources Factsheets Our FASD Blogs Here are some resources that we recommend: CanFASD Caregiver Resource Guide This resource gives insight and strategies into many areas of development and wellbeing, including sleep, friendships, routines, eating and much more. FASD: What Educators need to know Top tips for the classroom, but many are useful for the home too. Connective Parenting/NVRSarah Fisher is a trainer in Connective Parenting/NVR. This approach focuses on building the relationship between you and your child and learning how to de-escalate situations before they arise. Making sense of Fetal Alcohol Spectrum Disorder, guide for parents and carers by NHS AYRSHIRE and Arran Fetal Alcohol Advisory & Support Team Making sense of Fetal Alcohol Spectrum Disorder Summary Guide by NHS AYRSHIRE and Arran Fetal Alcohol Advisory & Support Team So you have been diagnosed with FASD, now what? Handbook of strategies for youth and young adults, FASD Network See also Scottish Diagnostic Resources
Insights and strategies for parents/carers Looking for parenting strategies? Here are some of our top tips for parenting an individual with FASD/PAE. Expand We understand that sometimes parenting an individual with FASD/PAE can be challenging. All our children and young people are unique, and their brains are wired differently. Traditional parenting approaches may not be appropriate or successful for their neurodivergent brain. Many children respond well to therapeutic parenting techniques and using connective parenting principles (based on non-violence resistance, NVR). For those involved in supporting children and young people with FASD/PAE the following principles and considers are helpful to bear in mind. FASD as a disability First, it is important recognise that those with FASD or PAE have a disability. This gives individuals additional rights and professionals additional responsibilities to protect their wellbeing and provide support. This may mean that they are entitled to a support person to be with them and may require frequent breaks and simple concrete language when talking with them. Think ‘stage not age’ People with FASD often present as at a much younger age than their chronological one. This means we need to reframe our expectation and remember that even on an hour-to-hour basis, an individual’s ‘stage’ of development can fluctuate. Think ‘can’t not won’t’ It is important to remember that the behaviours, or more aptly named symptoms, of FASD are not within the individual’s control. It is helpful to consider that an individual ‘can’t’ change their behaviours rather than ‘won’t’. For example, memory problems mean they will remember today but forget tomorrow. Masking People experiencing FASD may ‘mask’ the challenges they are facing. They appear confident but they struggle to remember. They are inconsistent in their responses and become easily confused. Frequent breaks, a supportive relationship and ‘checking in’ can help avoid this. Consequential learning, literal and concrete thinking People with FASD can have trouble connecting an action to a result. They may be unable to understand or remember previous experiences, so make the same mistakes repeatedly. Individual with FASD learn best when they can connect their learning with physical tools, reminders, and visual prompts.
Our Family Support Service We provide 1:1 support for all parents/carers across Scotland. Expand Struggling with navigating diagnosis? Looking for support in parenting strategies? Through our Family Support Service, we can offer support to parents and carers of children/young people with FASD or Prenatal Alcohol Exposure (PAE). No diagnosis is required to access our services, and we welcome adoptive, biological, fostering, kinship and step families. Parents and carers are matched with one of our FASD Advisors or Parent Partners, who all have lived experience of FASD and will work alongside you in identifying areas of support. Our team can offer advice, a listening ear and signposting to useful resources. We can also offer families, subject to funding, access to enhanced therapeutic services, including parent reflective sessions with our clinical psychologist, counselling services and a range of therapies. We accept self-referrals: get in touch via our helpline or email [email protected] to find out more.
Scottish FASD Network The Scottish FASD Network has been established to provide and enable connections between third sector organisations within Scotland who are working to raise awareness of FASD, supporting individuals with FASD and/or their parents and carers Expand The Scottish FASD Network was established in May 2021 by FASD Hub Scotland. The group is chaired by Professor Moira Plant and facilitated by the FASD Hub Scotland team. The group meets quarterly. The purpose of the group is to provide a forum for third sector organisations and charities within Scotland to network, share information, provide support, share best practice, and collectively raise awareness of FASD and the voice of the individual with FASD and their parents/carers. These organisations will work directly with, or be involved in, providing support service to individuals with a history of prenatal alcohol exposure (PAE) / FASD and/or their parents/carers, or have service users where PAE/FASD may be a consideration or influencing factor, or advocating on behalf of those impacted by prenatal alcohol exposure. If you are interested in your organisation joining the Scottish FASD Network, please email [email protected] and our Project Manager Aliy Brown will be happy to chat with you. Current network member organisations: FASD Hub Scotland Adoption UK in Scotland Kinship Care Advice Service for Scotland (KCAS) FASD Fife Oshay’s FASD Sleep Scotland Alcohol Focus Scotland St Andrews Children’s Society Visibility Scotland About Moira Plant: Moira Plant is Emeritus Professor of Alcohol Studies at the University of West of England in Bristol UK and Adjunct Professor at Curtin University Perth Australia. Her main interests include women, alcohol and mental health, drinking in pregnancy and Fetal Alcohol Spectrum Disorders. She has published on these and related subjects in peer reviewed journals and books. Moira has worked as a researcher in the field of FASD for over 40 years. She has acted as consultant to the World Health Organisation, the UK and other governments, the Centre for Addiction Research & Education Scotland (CARES), the US Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD) and is a member of the steering group of the Scottish Heath Action on Alcohol Problems (SHAAP). Moira is a psychotherapist and trains and supervises counsellors.
Talking to our children about FASD Not sure where to begin in talking about FASD/PAE with your child? Here are our top tips and recommended resources. Expand Top Tips Start early It’s never too early to start talking to your child about FASD. Sometimes children and young people are aware that their brain works differently from those of others. Introducing the idea that we all think differently and we all have strengths and challenges will help your child understand that they are unique and can achieve amazing things! Be positive Children pick up on the attitudes and values of those who care for them. By being positive about your children’s FASD diagnosis or experience of Prenatal Alcohol Exposure, children will mirror your positivity and recognise that FASD may make their brain work differently, and may lead to some challenges, but that they are unique, valuable and active participants in the world. Recognise strengths Everyone has strengths, and this is very much true for individuals with FASD/PAE. Help your child identify their strength and support them to develop it further. Maybe they are great at sports, or caring towards animals. Whatever their strength is, identify, support and encourage its growth. Avoid Stigma Whether you are an adoptive parent, biological parent, foster or kinship carer, it is important to avoid using language that may create stigma around the circumstances of the presence of FASD/PAE. Remember it is the alcohol that has caused the brain differences in individuals with FASD/PAE, not the actions of an individual. Join a community It’s important that children, young people and adults feel apart of a community and know that they are not alone – others think differently too. Look out for local support group, online communities and events where families can come together and meet others who have a shared experience. There are a number of online resources that may help you explain FASD to your child. FASD Think Differently AnimationThis new resource from FASD Hub Scotland introduces us to Charlie, who takes us through some of the challenges they face and what helps them have a successful day. Ideal for children age 8-13, but great for all ages and to share with others to raise awareness of FASD. Me and My FASDThis website contains resources including comics, booklets and a selection of activities to help children understand how their brain works differently. There are also games and resources available for purchase, including the ‘Break it Down Board’ - a useful tool for having conversations with children about their responses to situations. This is Me This interactive animated website contains a selection of short animations featuring the character ‘Me’ discovering some of the strengths and challenges in having a brain that thinks differently.
The Scottish, Fetal Alcohol Advisory Support and Training (FAAST) Team If you are in Scotland, and involved in the diagnosis of FASD, the Scottish Fetal Alcohol Advisory, Support and Training (FAAST) Team are available to support clinicians navigate the diagnostic pathway. Expand The Fetal Alcohol Advisory, Support and Training (FAAST) Team is based in the University of Edinburgh, having previously been based in Ayrshire and Arran Health Board. Their primary role is to work with multidisciplinary teams in Health Boards across NHS Scotland to improve access to diagnostic services and improve clinician confidence. FASD Hub Scotland and FAAST work closely together in developing services for individuals with FASD and their families in Scotland. The FAAST Team have a number of publications that you may find useful as you seek a diagnosis and subsequently support an individual with FASD. Understanding Fetal Alcohol Spectrum Disorder (FASD) - What Educators need to know A useful resource to share with your child’s school, offering information about FASD, how FASD affects the individual and strategies to support the development of skills. Making sense of Fetal Alcohol Spectrum Disorder (FASD) - information for parents and carers A guide for parents/carers with lots of useful strategies around key challenges, including transition, sleep, communication and impulsivity. The FAAST website is primarily for clinicians, however also contains useful information for caregivers.