FASD Hub

To speak to one of our dedicated FASD Advisors call the Helpline on 0300 666 0006 - select option 2 for FASD Hub Scotland, open Tuesday to Friday, 10am-2.30pm.

If you are a student/researcher working in the field of FASD, we may be able to support your work. At times, members of our community may be available to participate in your research providing the lived experience that enriches research and ensuring that its outcomes meet the needs those with FASD and their families. 

If you would like FASD Hub Scotland to consider supporting you in your research, approval must be gained from the Adoption UK Senior Leadership Team. You are required to provide a written confirmation of ethics approval from your university, and also a research outline document. These will then be reviewed by Adoption UK and you will be informed of the outcome. Research requests should be emailed to [email protected]  

Recent Research:

Over 600 Greater Manchester families affected each year: UK’s first study reveals local extent of Fetal Alcohol Spectrum Disorder. Research conducted by University of Salford

Read the study here 

FASD Hub Scotland and Adoption UK welcome this first FASD prevalence study from within the UK.  The study revealed that the prevalence of FASD among the cohort of primary aged children (8-9yrs) could be between 2-4% (1.8-3.6%), which is in keeping with the current estimated prevalence in Scotland estimated to be approximately 3.2% (SIGN 156, 2019).  The study acknowledges that within some specific groups there is likely to be an over-representation of those with FASD being educated either outside of mainstream education or those for whom other risk factors are known.  We know that children who are care experienced, and either remain accommodated within the social care or progress to permanency within an adoptive family or a kinship arrangement, are more likely to have been prenatally exposed to alcohol and therefore within this group and at higher risk of being affected by FASD. 

The studies recommendations to increase access to diagnosis for FASD, and interventions to support families and individuals affected by FASD, have been central to the development of FASD Hub Scotland tiered support service available to all parents and carers within Scotland, and Adoption UK’s six key recommendations from the 2020 Adoption Barometer which found 78% of parents whose children had an FASD diagnosis did not feel that healthcare professionals were knowledgeable about the condition; 82% had not received effective follow up support following their child’s FASD diagnosis; 70% of parents whose children were diagnosed with FASD felt that their child’s school did not understand the condition; and a worryingly, given the life-long nature of FASD, 90% did not feel that their child would receive the support they needed as they transitioned to adulthood.

During FASD Month, Adoption UK’s and FASD Hub Scotland’s month long campaign has focused on encouraging everyone to ‘think differently’ about FASD, and called on all governments to building on the work established in Scotland by FASD Hub Scotland (supported by the Scottish Government) Westminster, the Welsh Government and Stormont provide a single government-funded support Hub to support families affected by PAE/FASD, with the ask that the Scottish Government commit to continued funding for FASD Hub Scotland.  This ask is alongside the five others set out in the Barometer report: all UK nations have a fully costed FASD strategy covering awareness raising, diagnosis and support, alongside the reduction of PAE; improve recording of prenatal alcohol exposure; recognise the higher risk of FASD for care experienced children and young people; provide FASD awareness and training to all professionals; train health professionals to diagnose and support individuals with FASD; and the inclusion of integrated support plans for families affected by FASD.

It is therefore critical that every opportunity to taken for awareness raising and the prevention of PAE, and where this has not been possible individuals affected by PAE are identified at the earliest possible stage, and they and their families, are supported to ensure the best long-term outcomes.


Current Research:

NOW recruiting young people across the UK with FASD diagnosis (age 12-19) for a photo-based study 

Hi! My name is Miranda Eodanable and I am a part-time PhD student at the University of Edinburgh. 

My photo-based study aims to understand the experiences and identity of young people with FASD. Participants need to: 

  • Be young people aged 12- 19 years 
  • Be in education (school or college) 
  • Have a diagnosis or be in final stages of being diagnosed with FASD. Young people may also have a diagnosis of FAS or Neurodevelopmental Disorder with Prenatal Alcohol Exposure. 

In the UK, there is very little research about how young people view their diagnosis and any disabilities associated with FASD. Therefore, by understanding young people’s experiences of FASD, it will clarify what the FASD diagnosis means to them and what kind of support they value.  

This study is a ‘Photovoice’ study: young people will be asked to take photographs that tell a story about their daily lives, their experiences, and the support that they receive and what they would like. They will be interviewed about these experiences and the photographs they take.   

If you are interested or your child is interested: 

  • If a young person is under the age of 16, the parent must also give consent for the young person to participate in this study. 
  • All parents of 12-19 years olds are also asked to sign a consent form if they are willing to fill in two short questionnaires. 

Under 16 consent form for parent/carer

Over 16 consent form for parent/carer

University of Edinburgh LogoAll the information sheets and consent forms for young people and parents are on this webpage. If you need paper copies of the consent forms or have any questions about the study, please email [email protected]

If you would like to take part, PLEASE SEND ALL CONSENT FORMS DIRECTLY to [email protected] Paper consent forms and envelopes can also be made available by Miranda.