How professionals failed to recognise evidence of my adopted daughter’s fetal alcohol spectrum disorder
We have two children, a boy and a girl. Our daughter, the younger of the two, is adopted. We didn’t know when we adopted her, but we know now, that she has fetal alcohol spectrum disorder (FASD).
Our daughter moved to us when she was fourteen months old, having been fostered from birth. We were told that everything was normal and that she had reached all of her developmental milestones. She was and still is a smiley, happy little girl but, at six and a half, she struggles to read, write and count, even at a basic level. Her concentration is very poor, she struggles to follow simple instructions, she is impulsive and, in many ways, she behaves like a much younger child.
After our daughter came to live with us, we soon recognised that she was developmentally delayed. We put this down to a lack of stimulation in her early life and we thought that we could help to make up the deficits. At that time, we didn’t know that she was alcohol affected. We thought that, with the right environment and a lot of support and encouragement, our daughter would (to some degree) catch up, since we had been told that everything was “normal”. I stopped working for three months and spent a lot of time playing on the floor with her, encouraging her to move, play and make noises. She had problems with her mobility, so she had physiotherapy and we did our exercises diligently. The difficulty with movement and walking was overcome, but by the age of two, it was obvious to us that there were more serious problems with her cognitive development. We thought that it would be obvious to the professionals in our lives too, but it wasn’t.
Searching for answers
It has been difficult to get definitive information, but we believe that our daughter’s birth mother drank alcohol while she was pregnant. As far as we know, she is not an alcoholic and, although there have been reports to the contrary, she has also denied that she drank any alcohol at all while pregnant. Set against this, we have the evidence of our little girl; the physical characteristics and mental and behavioural deficits that she has are consistent with prenatal exposure to alcohol.
When we were trying to work out what was wrong, my sister suggested that we look into alcohol-related neurodevelopmental disorder, and she directed me to the British Medical Association’s report, Fetal Alcohol Spectrum Disorders: A Guide for Healthcare Professionals (2007). It was a revelation. I was reading about our daughter.
Since then, I have spent four and a half years reading and learning about the subject and have found that the USA, Canada, Ireland, Australia and a lot of other countries are way ahead of the UK in understanding and dealing with FASD.
We have met many professionals who have not understood the effects of alcohol on the fetus. While I thought that it would be obvious to professionals that our daughter had problems, it wasn’t. Friends and other parents commented on our daughter’s appearance and behaviour, but no-one in the private or state nursery schools that she attended could see the deficits in her behaviour, understanding and learning. She is a pretty, bubbly, engaging child and that is all that many professionals saw.
Eventually, we arranged for her to be assessed and as a four-year-old, she tested, developmentally, as a two-year-old. She wasn’t learning and retaining information on shapes and colours, she couldn’t join in the nursery rhymes and do the actions like the other children, she couldn’t sit still, she couldn’t (and still can’t) judge force, speed and distance (she will cannon into you because she can’t judge when to stop), she didn’t understand toilet training and she had difficulty learning basic routines that our son had picked up readily. It is the “whole package” which shows that there is something wrong.
Reading the signs of FASD
Other children show some of our daughter’s behaviour but with her, certain behaviours have persisted beyond the time they would normally have been expected to stop. She chews and licks things. The world is her friend. She tackles life straight on, with huge energy (she is hyperactive) and has no sense of danger. She confabulates (we used to talk about her “fabrications”, but that’s not right; it is confabulation). There are many things, apart from the academic learning deficits, which show that there is cognitive impairment. She is very inconsistent in her performance. Sometimes we see flashes of a bright, intelligent girl, but then the information is gone. The inconsistency in performance is a characteristic of FASD; things are here today and gone tomorrow. The differences between our daughter and her academic year group are now becoming more and more obvious. The gaps between her development and that of a “normal” child will continue to increase.
As well as the behavioural and learning disabilities, our daughter has problems with her teeth. To prepare our dentist for what he was about to encounter I sent him the paper Dental procedures and the patient with Fetal Alcohol Syndrome by Peggy Seo Oba (ACCESS: Journal of the American Dental Hygienists Association, May – June 1997). His comment was: “that explains so much of what I see”. We are very pleased he took the time to read the article.
There seems to be a general lack of knowledge and understanding of FASD in the UK. It might be widely understood that prenatal exposure to alcohol causes brain damage, but the very broad implications of that damage and how it affects many aspects of the person’s life are not appreciated.
Schools everywhere will have alcohol affected children on their roll, whether they know it or not. In many cases, children may receive the wrong diagnosis. Indeed, our daughter would have been diagnosed with attention deficit hyperactivity disorder (ADHD), if we hadn’t persevered.
My hope is that teachers (right through the school age range) and health care professionals become much more aware of FASD and how it affects children. Our daughter’s behaviour was simply seen as “lovely”, when it should have been ringing alarm bells
In the UK, you can’t get a diagnosis of FASD without confirmed maternal alcohol consumption during pregnancy and that can be very hard to get. How many women with a child who has learning difficulties are going to volunteer the information that they were drinking while pregnant? How many education and health professionals are actually going to ask?
The damage that alcohol causes to unborn children is irreversible and totally preventable. However, it happens, and when it happens, those involved with the care and education of alcohol-affected children need to develop a good understanding of the brain damage caused and its impact on behaviour and learning. More resources are becoming available but given the drinking culture in the UK, it is quite possible that FASD will become a much bigger issue for schools and healthcare professionals.
Further information
The author of this article, who has asked to remain anonymous, is the adoptive mother of a child with fetal alcohol spectrum disorder.
Information and advice on FASD is available from:
www.nofas-uk.org
