Thousands of children and young people living with a brain condition caused by exposure to alcohol while in the womb are in desperate need of dedicated and joined up support.
The charity Adoption UK is calling for each nation of the UK to provide a government funded fetal alcohol spectrum disorder (FASD) in every nation of the UK.
Caused by the consumption of alcohol during pregnancy, FASD is the most known cause of neurodevelopmental disability and birth defects in the UK – but it often goes unrecognised.
FASD could affect up to 5% of the population, but it is estimated a third of adopted children have the condition. Alcohol misuse is one of the main reasons children are taken into care, but many adopted children with FASD will have come from families where there was drinking during pregnancy, but not to access, and where alcohol was not the main reason for them entering care.
Adoption UK’s 2020 Adoption Barometer report revealed that 1 in 4 adopted children are either diagnosed with, or suspected to have, FASD. More than half of families polled had waited two years or longer for a diagnosis, and more than three-quarter felt healthcare professionals lacked basic knowledge about the condition, even though FASD is more common than autism.
Scotland leads the way in the UK, in terms of diagnosis, support, and awareness of FASD. The creation of the FASD Hub Scotland in 2019, funded by the Scottish Government and managed by Adoption UK, quickly established itself as a go-to resource for parents and carers seeking to gain support, information, signposting, training, andto navigate their way through the diagnosis process.
The SIGN (Scottish Intercollegiate Guidelines Network) Guidelines (2019) means children and young people in Scotland now have a route to diagnosis.The guidelines have since been adopted in England where they are awaiting release as the NICE (National Institute for Health and Care Excellence) quality standards for FASD.
Ruth Cliff has been unable to get an FASD assessment for her son, who she adopted 16 years ago, despite knowing his birth mother used alcohol throughout her pregnancy.
Ruth, who lives in England, said: ‘We were referred to a paediatrician who told me they didn’t have the expertise to assess for FASD and there was no one in our area who could do it either. I asked my local authority to fund an assessment via the Adoption Support Fund, but this was turned down.
‘Finding the right support for my son has completely taken over my life, so to have a specialist one-stop-shop like the hub in Scotland, where people truly understand FASD, would be life-changing.’
Adoption UK is marking International FASD Awareness Day, by calling on Stormont, the Welsh Government and Westminster to replicate the success of the FASD Hub Scotland in each nation. The charity is also calling on the Scottish Government to commit to the long-term funding of the FASD Hub Scotland.
Sue Armstrong Brown, Adoption UK’s CEO, said: ‘Great strides have been made in Scotland around FASD, but we’ve still a long way to go to ensure individuals with FASD and their families receive the support they so urgently need. Every child entering the care system must be screened for FASD.’
Adoption UK will be launching an animated film today, made in collaboration with parents, carers and young people, some of whom have FASD. Conor, aged 13, who has FASD, provided the film’s voice-over. Earlier this month, FASD Hub Scotland launched the first Parent/Carer FASD diagnosis experience survey. Adoption UK is also hosting FASD webinars throughout September.
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