Are children who were exposed to alcohol in the womb getting enough support?

An adoption charity is urging each UK nation to provide dedicated support for thousands of children and young people who are living with a brain condition caused by exposure to alcohol while they were in the womb.

Foetal Alcohol Spectrum Disorders (FASD) affect up to five per cent of the population, and are the most known cause of neurodevelopment and birth defects in the UK, says Adoption UK.

People with FASD are affected by a range of conditions that manifest as a result of being exposed to alcohol while they were in the womb, and can include lifelong physical problems and issues with behaviour and learning.

The NHS warns that children who do not receive appropriate support for the condition “may have difficulties with learning, misuse drugs and alcohol, develop mental health problems, and find it difficult to get a job and live independently as an adult”.

The condition is a particular problem among adopted children, with an estimated third of adopted children having it, says Adoption UK.

The charity’s 2020 Adoption Barometer report revealed that one in four adopted children are either diagnosed with, or suspected to have, FASD. But a lack of basic knowledge about the condition among healthcare professionals meant it took two years or longer for more than half the families polled to get the diagnosis.

This is despite FASD being three to five times as common as autism spectrum disorder (ASD), which affects around 1.1 per cent of the population, according to the National Autistic Society. In contrast, FASD is thought to affect more than three per cent of the UK population, with some studies estimating even higher prevalence rates.

One adoptive parent based in Scotland spoke about how their daughter Isabelle began displaying violent and erratic behaviour at the age of two and a half.

“She started headbutting, kicking and biting. Then she began throwing things. Every week we were covered in bruises. Aged three, Isabelle became obsessed with sharp knives,” the unnamed parent said in Adoption UK’s report.

It wasn’t until they contacted Adoption UK’s FASD Hub in Scotland that they were able to get a diagnosis of FASD for Isabelle. The parent added: “The diagnosis has been the key to us understanding Isabelle’s behaviour, how to parent our daughter, and how to advocate for her.”

The FASD Hub in Scotland is the only resource of its kind in the UK. It was created in 2019, funded by the Scottish government and managed by Adoption UK, and offers a tiered service that includes a helpline, peer support, factsheets, caregiver support and access to therapeutic services.

Having similar hubs in England, Wales and Northern Ireland would be “life-changing”, said Ruth Cliff, an adoptive parent living in England.

Cliff, who adopted her son 16 years ago, has been unable to get him a diagnosis of FASD delisted knowing his birth mother drank alcohol throughout her pregnancy.

She 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,” added Cliff.

Last September, the National Institute for Health and Care Excellence (NICE), outlined plans to have every drop of alcohol consumed by pregnant women be recorded, including alcohol consumed before a woman was aware she was pregnant.

The proposed guidelines were based on those already in place in Scotland, and aimed to help prevent FASD. However, the move sparked backlash from maternity organisations, who said it was a “staggering level of interference in women’s privacy”.

There is also the fact that some babies may already have been exposed to alcohol before their mothers even know they are pregnant, a point acknowledged by an inquiry into the issue in 2015. The report also pointed out that approximately 50 per cent of births are unplanned, therefore making FASD “impossible to prevent completely”.

The creation of more FASD Hubs would therefore provide much-needed support for parents – whether biological or adoptive – struggling to care for children afflicted by the condition.

Sue Armstrong Brown, CEO of Adoption UK, 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.”