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.
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.
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.