Sam Lister and her partner Paul had never heard of foetal alcohol spectrum disorder. But as experienced foster carers with 13 placements behind them, they knew there was something wrong with their adoptive son Lee when he was just five-months-old. “He was floppy, he couldn’t sit up. He just wasn’t right,” says Sam. By the time Lee was two his behaviour was erratic. He was biting, spitting and showing compulsive habits. These are all typical symptoms of FASD, which is caused by the mother drinking alcohol during pregnancy.
“Lee had a thing about locked cupboards and would constantly turn the lights on and off,” Sam remembers. It took another two and a half years before her son, now aged six, was given an accurate diagnoses by a paediatrician. “My support workers held their hands up and admitted they didn’t know anything about FASD. They didn’t have a clue. But after the diagnosis my adoption support worker was fantastic and put me in touch with the charity for parents of FASD children.”
Her story is far from unique, according to Julia Brown, founder of support charity the FASD Trust.“The reality is that the care system has become a family-finding service for children with FASD,” says Brown. In recent years the charity’s helpline has received an increased number of calls from prospective adopters anxious to find out more about the condition, which causes pre-natal brain damage, before deciding whether to continue with their application.
FASD is also having an impact on children who are undiagnosed and who are subject to special guardianship orders or being looked after by kinship carers. Martin Clarke, learning and development manager at the Adolescent and Children’s Trust charity and adoption and fostering agency, says: “That’s my biggest worry because these families are not offered the same level of support as adoptive and foster carers. Traditionally they are older people, maybe grandparents who say ‘I don’t want my grandchild going into care.’ But they won’t be prepared for the behavioural and emotional problems which occur because nobody has prepared them for it and they will be unable to cope with the placement longer term.”
There are no official figures for the number of children in the UK care system with FASD. The condition can often be misdiagnosed because symptoms are similar to some of those traditionally seen in children with autism or attention deficit hyperactivity disorder. It is estimated that up to 3% of the UK population has the condition, although academics Penny Cook and Raja Mukherjee have argued that figure could be underestimated and warn the UK is in the grip of an FASD “hidden epidemic”.
Research carried out in Peterborough in 2015 gives an indication of the prevalence of FASD among looked after children. The audit revealed a third of looked after children in Peterborough referred for a health assessment had the condition, and three-quarters of children undergoing adoption medical assessments had the potential of FASD as their birth mother had a history of alcohol. If these figures were applied across the UK then, according to a report by the All Party Parliamentary Group on FASD published in December, there are “major implications” for government policy.
The report followed the group’s earlier inquiry into FASD. Chair Bill Esterson, Labour MP for Sefton Central, says: “We don’t know if the Peterborough figures can be applied across the whole country or if Peterborough is at the top end of the statistics. But these figures go a long way to explain why so many children end up in care and why it is so difficult to improve their life chances. What we need to see is a complete sea change in our attitude in social work, teaching and health. We need to see a massive FASD education programme right across the board.”
New UK alcohol guidelines recommend women abstain from alcohol if they are trying to get pregnant and during pregnancy because of the risks of FASD. Esterson believes this is “really, really good news” with the potential to change public and professional behaviour.
The FASD Trust has already started to raise the profile of the condition among health and social care professions. It has established a professional forum for social workers, following a similar one for clinicians. And the trust runs training programmes for councils already alert to FASD. But Brown says: “What’s happening though is that an authority will ask us in to train their foster carers, but not their social work staff which is really interesting. They see it as a carer issue – not something which impacts on professional practice.”
Clarke also trains his staff in FASD awareness but says only robust research will change practice: “At the moment there isn’t credible evidence around to get FASD onto social worker or teacher training courses. We need to have a proper study done so that we know how many children we are talking about.”
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