The Conversations We’re Avoiding About Fetal Alcohol Spectrum Disorder
National Organisation for Foetal Alcohol Syndrome – UK (NOFAS-UK)
Here we are again. Another study shows that the U.K. is among the top countries for drinking alcohol during pregnancy. A new Norwegian study shows that 28.5 percent of women in the U.K. drink when they know they are pregnant – placing the UK ahead of Russia (26.5 percent) and Switzerland (20.9 percent). This follows on from an earlier predictive study by the Canadian Centre for Addiction and Mental Health (CAMH) that showed more than 40 percent of pregnant women in the U.K. drink alcohol. The difference between these numbers can and will be debated by the experts. But let’s not miss the point.
The implication is staggering.
These figures show that entirely too many pregnancies risk damage to the brain and bones of the developing embryo or fetus. Most people are shocked to learn that fetal alcohol spectrum disorder (FASD) is considered to be more prevalent than autism. In fact, many kids with FASD are misdiagnosed as having autism. Our son was, originally.
We have to reframe how we think about this issue, beyond the stigma. The Norwegian study shows that women who are older and more highly educated are more likely to drink during pregnancy. Another recent study showed that “75 percent of women who do drink during pregnancy are consuming alcohol together with a partner. Of these women, 40 percent of drinking episodes are initiated by male partners.”
In a country like the U.K. where the pub culture run deep, this lack of awareness and such widespread drinking during pregnancy means that several thousand kids each year are unknowingly born with a hidden disability. They may face lifelong challenges with executive functioning – compromising their ability to think abstractly, to link cause and effect, and to process multi-step instructions. They may require additional cognitive support and find it difficult to control their impulses. Their brains may easily become overloaded by stimuli they cannot process quickly enough, causing meltdowns and in some cases violent outbursts. These kids will grow into adults whose lives can be successful, but who will require an underpinning of consistent support and understanding to help them achieve their potential.
The U.K.’s response to FASD lags dangerously behind other countries, at great cost to individuals, their families and society at large.
Funding for diagnosis and support can be a post-code lottery. Despite the fact that the government recently stated it is the responsibility of local Clinical Commissioning Groups to commission relevant services, far too often this responsibility is ignored, under-addressed, and/or under-funded by straining bureaucracies. This bureaucratic nightmare can be compounded by misinformation or prejudice. Families can find the process of seeking a diagnosis bewildering. They are often turned away or denied access to professionals adequately informed on FASD.
Even professionals misunderstand the fact that for every child with the facial features of the more widely known fetal alcohol syndrome, experts say there may be as many as nine or 10 others out there on the spectrum with no visible sign of the disability. Parents, including courageous birth mothers who confirm drinking during pregnancy, are often discouraged from seeking a diagnosis by professionals who tell them not to “label” their child. This can deny the child and those around him or her the lens that allows a proper understanding of the whole child to unfold.
Many schools remain unaware, uninformed and/or unwilling to address the needs of those with FASD. There are kids in classrooms across the U.K. who are undiagnosed, unsupported and drowning in an increasingly inflexible educational system. Recently we have seen reports that schools are cutting TA positions, that most basic of support for kids with disabilities.
Denial, refusing to work with concerned families, and spouting on about inclusion while denying kids access to education to which they are entitled is quite frankly, shameful, and totally unworthy of a supposedly caring society. Families, foster care and adoption services are being strained beyond their limits.
Worst of all, as a result of society’s inaction on so many levels, kids are hurting. Unsupported and misunderstood, they often encounter challenges that compound as they grow older, when the school’s curriculum becomes more abstract, social relations become even more confusing, and pressures increase all around. With depressing predictability, they are labeled behavioral problems. They too often end up self-medicating, getting into trouble, or worse. This societal head-in-the-sand approach to the figures about drinking in pregnancy leads to a very dark place for too many. These negative outcomes can often be avoided with proper awareness, diagnosis, understanding and support.
People with FASD deserve the dignity of a diagnosis and access to education and services to which they are entitled due to their disability.
The guidance from the leading medical authorities in the U.K. is clear: “If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.”
Why aren’t we listening? We’re willing to give up soft cheese during pregnancy but not alcohol, despite the risk of brain damage? I just don’t get it.