The news has lit up today following a BBC File on 4/Adoption UK survey that highlighted a state of crisis in more than one-quarter of adoptive families in the UK.
To anyone who has adopted or is close to networks supporting those with adopted children, there is sadly no surprise at these figures. Adoptive families across the UK are feeling relieved that their struggles are being noticed.
In one of its more attention-grabbing findings, the survey highlights that "almost two thirds of respondents said their child had displayed aggressive behaviour towards them."
Most new stories are focusing on the very real impact of the too often traumatic and neglectful backgrounds that many of these children have had. And yet, there is a huge gaping hole in the coverage.
For many of these children, there may be a physical reason for the very real and distressing behaviours. A large proportion of these children may have brain damage due to Foetal Alcohol Spectrum Disorders (FASD). One study showed that in Peterborough as many as 75% of the children available for adoption were exposed to alcohol in the womb. (Which is not to say they all had FASD. We are still waiting, after decades, for a home-grown UK prevalence study.)
There are structural reasons why FASD is not identified earlier and more consistently.
The UK sadly lacks a national strategy for diagnosis and care of those with FASD. Government has recognized the importance of addressing FASD and has tasked the local clinical commissioning groups with following through. "Early intervention services can help reduce some of the effects of Fetal Alcohol Spectrum Disorders (FASD) and prevent some of the secondary disabilities that result. Responsibility for commissioning these services lies with clinical commissioning groups." (Written Question HL5052 - http://bit.ly/2kdNiAV)
Sadly, however, it's a postcode lottery and time and time again families are at worst misled and/or denied knowledge about the child's prenatal exposure to alcohol or their efforts to seek diagnosis and understanding hits hurdle after hurdle due to ignorance or a lack of conviction that a diagnosis would in fact matter. This then compounds problems with seeking proper support in schools. Without that support, the situation and behaviours further spiral, especially as the student hits the challenging teenage years.
Some believe strongly that there needs to be greater information sharing and insights provided by social services and other related agencies to prospective adopters. "Around a third believed they did not receive 'full and correct' information about their children during the adoption process." This information should be available, along with information about FASD. This doesn't mean, however, that people should not adopt. The advice from at least one adopter of a child with FASD (who happens to be my husband) is "Don't go into this wearing rose tinted glasses. Don't avoid reality. Understand this is lifelong brain damage. But if after doing all of your research, you feel you are ready, do go into it."
Our frontline healthcare providers also need more information. In a small survey recently conducted by OnePoll for NOFAS-UK, only 23% of GPs strongly agreed that they feel confident that all those with FASD are being diagnosed properly and 41% of GPs said they have not received clear guidance from their local Clinical Commissioning Group regarding a pathway for diagnosis and support of FASD. Only 31% of the GPs said they had in-depth education regarding FASD in their medical school training. This survey begs for a larger cohort of GPs (and possibly paediatricians and other specialists) to be similarly questioned.
Meanwhile, research in the US shows that diagnosis and support is the key to happier families. Rather than seeing a violent child, if a family understands the root causes of the behaviour may be due to how the child's brain is wired and not due to wilful 'naughtiness', the whole picture changes. This is a partial answer to the Adoption UK results that said "more than a quarter of parents said there were either serious challenges impacting the wider family, or that their adoption was at risk of disruption, or that it had already disrupted." This support is currently found mostly in peer-to-peer support via networks like the FASD UK Alliance. But that is not enough. Families need professionals to back them up and arm them with the information, support and insights their children deserve.
Yes, the lived experiences of adoptive families need to be heard. Yes, I identify with much of what they are saying. But I strongly suggest that we need to dig deeper into the 'why' behind the behaviours. The fact that many of these children may have an underlying brain-based disability should give us all pause for concern. We need to think once again about the type of messages we send as a society. The media only wakes up in horror when either someone suggests pregnant women are wise to avoid alcohol or when we can point fingers at out of control children in the care system or who have been adopted.
The uncovered story is the need for a national strategy and true leadership on FASD. We need to ensure families seeking a diagnosis are not given incorrect information or dismissed as only wanting to 'label' their struggling children. We need champions for people with FASD and their families.
My son with FASD is lovely. He was diagnosed at age 10. Our family's trajectory changed once we knew he had FASD and we put in place the proper supports, ensured his educational setting was appropriate, decreased our expectations, understood that he was not intentionally bad, and realized that he was overwhelmed by a world he found confusing. Behaviours can be symptoms. As a society we need to look more closely at what this survey might be telling us.
Sandra Butcher
Chief Executive
National Organisation for Foetal Alcohol Syndrome-UK