Resources

This list is a work in progress, and far from complete. These are some sites that have been helpful for us as we started on our journey to understand FASD and its impact on our wonderful son.

UK – National organisations and support groups (though it sometimes feels it, we are not alone!)

• NOFAS UK – The National Organisation for Foetal Alcohol Syndrome UK (NOFAS-UK) is dedicated to supporting people affected by foetal alcohol spectrum disorders (FASD), and their families and communities. It promotes education for professionals and public awareness about the risks of alcohol consumption during pregnancy.
• FASD UK Alliance – A coalition of groups and individuals from across the UK who are united together for positive social change for those affected by Foetal Alcohol Spectrum Disorders (FASD).  Affiliates include small local, regional and virtual groups as well as some of the country’s longest standing national organisations devoted to FASD, with links to international networks.  Two online support groups provide a space for ongoing dialogue.  FASD UK Facebook Support Group includes birth parents, foster carers, adopters, extended families, adults with FASD connected to FASD across the UK.  FASD UK Professionals Facebook Support Group is for practitioners. Also check out the FASD UK YouTube channel with links to a wide range of excellent videos.
• FASD Network UK is a social enterprise providing support to caregivers of children and adults with Foetal Alcohol Spectrum Disorder. It also provides training for professionals and practitioners and advocates for services for people with FASD. FASD Network UK has localised services to accommodate families and practitioners across the North East and North Yorkshire and can offer support via social media to  people across  the UK.  Be sure to check out their resources page.
• SOS SEN: The Independent Helpline for Special Education Needs (UK) – helps people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

International

• The European FASD Alliance was founded in February 2011 to meet the growing need for European professionals and NGOs concerned with FASD to share ideas and work together. The European FASD Alliance is a nonprofit international organization registered in Sweden.
• The UK & European Birth Mum Network – FASD is a network of women who have consumed alcohol during pregnancy and may have a child or children with Fetal Alcohol Spectrum Disorders (FASD).
• AFASAF (Pinterest) – excellent links re the brain and FASD
• NeuroDevNet, a Canada Network of Centres of Excellence (NCE), is dedicated to helping children overcome neurodevelopmental disorders. The vision of the network is to accelerate the pace of understanding the causes of neurological deficits and to transfer this knowledge to health care professionals, policy makers and communities of interest.
• Multilingual fact sheets

Diagnosis

• National Clinic for Foetal Alcohol Spectrum Disorders – Led by Dr Raja Mukherjee, the National Clinic for Foetal Alcohol Spectrum Disorders specialises in assessing and treating children and adults with FASDs.  They are the only specialist FASD clinic in the UK and one of the very few places that can confidently diagnose Alcohol-Related Neurodevelopment Disorder.
• Centre for FASD – A private clinic led by Dr Cassie Jackson has been doing great work with families, especially in helping people access assessments via the Adoption Support Fun.
• The Fetal Alcohol Advisory and Support Team – a small team based in NHS Ayrshire & Arran funded by the Scottish Government. They work with multidisciplinary teams in Health Boards across NHS Scotland to improve access to diagnostic services and improve clinician confidence.
• How foetal alcohol spectrum disorders could be a hidden epidemic, Penny Cook and Raja Mukherjee, The Conversation, January 13, 2016
• So you have been diagnosed with FASD, now what? A handbook of hopeful strategies for youth and young adults by Boyle Street Education Centre & Agnieszka Olszewska, 2007.
• First UK estimates of children who could have conditions caused by drinking in pregnancy revealed, Dr Cheryl McQuire et. al show that 6-17% might be affected. “Researchers from the University of Bristol and Cardiff University worked with clinicians to assess a wide range of information on mothers’ drinking in pregnancy and studied the development of 13,495 children from Bristol’s Children of the 90s study. They applied a screening tool and found that up to 79 per cent of children in the sample were exposed to alcohol in pregnancy and that to up to 17 per cent screened positive for symptoms of FASD”.

Online support

• FASD UK Facebook Support Group.
• Flying with Broken Wings is the largest FASD Facebook support group, led by and involving a high percentage of adults with FASD.
• Shifting the paradigm: towards a neuro-behavioral approach to FASD Facebook Support Group.
• FASD and Gender Identity Facebook Support Group.
• FASD UK Professionals Facebook Support Group.

Education

• Please see the education page of this blog.

Parenting

• Please see the parenting page of this blog for more resources.

The Brain & FASD

• Please see the brain & FASD page of this blog for more resources.

Prevention

• Check out the Drymester campaign funded by the Greater Manchester Health and Social Care Partnership.

 

FASD is preventable. The national organisations above have information on this important topic. We encourage people to learn more about it.  However, on this blog we are focused more specifically on those who have FASDs.  It does not mean we do not consider prevention an integral and important topic.  This hip-hop video from Australia sums it up well.

Here is another great music video from the Bissell Center and EFAN