By Joanna Buckard, specialist trainer and health and social care lecturer
Foetal alcohol spectrum disorder (FASD) is a lifelong, largely invisible disability. It’s caused by prenatal alcohol exposure and is a well-known preventable cause of intellectual and behavioural disorders.
Young people with FASD commonly experience difficulties around impulsivity, social understanding, relationships, criminality, mental health and linking cause and effect. They can be vulnerable to all types of grooming, including child sexual exploitation (CSE), in their pursuit for relationships and acceptance. In adulthood, they’re more likely to have problems with housing, relationships, employment, parenting and the law.
Studies suggest that in the general population, between 1 and 5% of people could be affected by FASD, which has been a diagnosable condition since 1973. Yet it is still sometimes thought to be rare, with some professionals believing that they’ve never worked with a child with the condition, and is frequently missed or misdiagnosed.
This is often down to a lack of recognition and training, among social workers as well as GPs, paediatricians, and teachers. Parents and carers of children and young people with FASD comment on a lack of appropriate understanding, support and resources – factors that can lead to family breakdown and failed adoption.
‘Alcohol and ambiguities’
Alcohol is a known teratogen, a substance that disrupts typical development in pregnancy. Foetal exposure to a teratogen can cause death, malformations, growth deficiency or functional deficits. Not all teratogens cause all four of these outcomes, but alcohol is one that does. It is a neuro-behavioural teratogen that can affect the central nervous system and developing brain, even at low levels of exposure. This can result in brain damage and behavioural changes without necessarily causing physical malformations.
Community Care Live 2016
Joanna Buckard will be giving a talk on Foetal Alcohol Spectrum Disorder in fostering and adoption at Community Care Live London. The session will cover:
- How many looked-after children may have been exposed to alcohol prenatally?
- What FASD is and how to recognise if a young person may be affected
- The process of getting a diagnosis and the long-term needs of the affected young person
- Overlapping disabilities and misdiagnosis
- Identifying and meeting the additional support needs of children with FASD and their foster carers and adopters
- Why FASD should be at the fore during the adoption and fostering process
Book here.
In the UK, advice around alcohol consumption has been ambiguous, and a clear understanding of the risks – both among professionals and pregnant women – remains limited. Women have been advised that they can drink one to two units once or twice a week during pregnancy.
But studies have shown that understanding around units is poor, as is recollection. This means women may have been drinking far more alcohol than is recorded. Earlier this year, England’s chief medical officer Dame Sally Davies warned that there is no safe level of alcohol use in pregnancy.
‘Diagnostic challenges’
FASD is a spectrum disorder and a child or young person should receive a specific diagnosis of foetal alcohol syndrome (FAS), alcohol-related neurodevelopmental disorder (ARND), alcohol-related birth defects (ARBD) or partial foetal alcohol syndrome (PFAS).
FAS is the most recognised form of the disorders because of the characteristic facial features – but it’s not the most common form.
While some children and young people with FASD will have an IQ below 70, most have an IQ within normal limits and appear bright-eyed, friendly and engaging with an effective superficial skill in language. Many will give the impression of being more able than their actual functional level.
Due to its presentation, FASD can sometimes be missed altogether, and difficulties may be attributed to attachment disorder, neglect, ADHD, conduct disorder or autism. None of these diagnoses, however, would fully explain the characteristics of a child with FASD.
When a child or young person does get referred for FASD diagnosis, there is frequently no record from health or social care services of any known or suspected prenatal alcohol consumption. Not all assessment forms specifically include in-depth questions regarding prenatal alcohol use, meaning the information recorded can vary and may be linked to the individual knowledge base of each professional. In the case of looked-after or adopted children, this can then make getting the information required to make a diagnosis difficult retrospectively.
The majority of looked-after children may have been exposed to prenatal alcohol, yet very few will have been assessed for FASD.
In sibling groups, where one child has been identified as having FASD, all siblings may benefit from being assessed as there is increased risk that they may have also been affected. It is more common for a child with facial features, global delay or growth problems to be identified first, but his or her siblings may have other forms of the disability caused by prenatal alcohol exposure.
‘Getting in early’
FASD presents differently depending on the age of the young person. The differences may not be apparent in young children but it is important that FASD is not ruled out during this time, because later in childhood or during adolescence it may be expressed and difficulties occur.
In the case of adoption of a young child that is known or suspected to have been exposed to prenatal alcohol, even who is meeting all milestones at the time they are placed for adoption, it is important that adoptive parents are made aware that difficulties may subsequently develop.
Secondary disabilities become more obvious during later childhood and adolescence. They can cause many functioning problems as the young person appears emotionally and socially immature compared with their peers and do not seem to learn from their mistakes.
Studies show that long-term outcomes are worse for children affected by FASD who have not received the diagnosis and therefore go without appropriate support and understanding at school or at home. In looked-after children, who experience frequent moves, the impact is intensified.
During the period of transition to independence, it is crucial that a young person’s needs are fully assessed. In a young person with normal IQ, who presents well, assessments can show a daily living skill of a much younger child, leaving them very vulnerable.
The proper training of professionals in foetal alcohol spectrum disorders is imperative so that assessment, diagnosis and support strategies can be implemented in order to allow the affected individual every opportunity to succeed.
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Are we studying the effects of alcohol consumption in the sperm donor up to 9 months before conception as well?
Yes, It would be very interesting and helpful to know how the consumption of alcohol in the male affects the pregnacy before & after conception. Assuming there has been research
Isn’t this article effectively an advert? Is there anyone who puts the other side of the coin and helps us understand why government guidelines might be 1 or 2 units consumption – or are we to assume it is pure recklessness?
I understand that FASD should not be ruled out of consideration, but this article fudges facts with hype: it is terroristic in nature.
‘Many will give the impression of being more able than their actual functional level.’ – How many? what percentage? Where are the citations?
‘The majority of looked-after children may have been exposed to prenatal alcohol…’ Possibly but what percentage – and what scientific research has been done to show that they were exposed at a level that is harmful? Are we to understand that every child born before the era when alcohol consumption began to be recognised as a possible issue, and pregnant women were advised to curb their consumption, suffers from ‘many functioning problems’, ‘appears emotionally and socially immature’ and ‘do not seem to learn from their mistakes.’
The whole of the cabinet were born before alcohol warnings were introduced!
Wait a minute… perhaps you are on to something…
You are right to have an enquiring mind, Christopher. But don’t stop there, keep digging and you will discover an amazing barrage of evidence of the powerfully damaging impact of alcohol on the embryo/fetus during pregnancy. Think of this: in roulette, you can win sometimes, and sometimes you can lose. The risk is entirely yours. With alcohol in pregnancy, there is the risk that the final result will be a brain-damaged baby. The damage may be severe or slight. The mother may enjoy the glass or two of her favourite beverage but the risk is entirely on the newborn. Why take the risk of bringing a child into the world who cannot cope with his or her peers or society itself. The cost to the individual child and the community simply isn’t worth it. So keep investigating, don’t quit now. I’m sure you’ll be a better man for it. And so will all those children yet to be.
Very interesting point which l’d expect to be taken into consideration when researching FASD. It would be good if the general public was made more aware of this syndrome particularly as it’s preventable.
The effects of alcohol on male sperm are being studied and the changes that are made. The epigenetic studies are in their infancy though compared to the robust evidence regarding the teratogenic effect of alcohol use in pregnancy. Experts I have spoken to believe that even if the male sperm was affected, the woman still would have to drink alcohol in pregnancy in order for the child to have an FASD.
I think an awareness campaign would be in order for this syndrome I’m 52 and this is the first ive heard of this I cant believe it. All I knew when pregnant was don’t drink don’t smoke.
Have recently supported young people who have this disorder who are repeat victims of crime. There seems to be a lack of support or understanding of this disability even amongst professionals such as mental health services and social services. I am aware of one young woman who has had three children removed shortly after birth, is now in a new relationship and considering trying for another child. More research is required and more support for assisting those who have this disability to cope with day to day life if needed. Thank you for posting.
Thank you for posting this important article. I agree that more information would help the public to understand why alcohol is not recommended in pregancy, rather than just stating ‘don’t.
Information on the effects of alcohol on male sperm would also support couples thinking of conceiving.
A very timely article, if ever there was one! Our society still appears to struggle with the issue of alcohol consumption, and with knowing what (if any) is an acceptable amount to consume.
What this article also highlights is a phenomenon that I, personally, find very disturbing. It is this… That in respect of the health of the populace, there are some things that are made widely known to us, and are often talked about; and some others that are not. For instance, I do not doubt that everyone has heard of cancer, or diabetes, or obesity. However, I doubt that many of us are as familiar with Foetal Alcohol Syndrome, Endometriosis, or maybe Motor Neurone Disease. WHY? I cannot understand why some illnesses are more publicized than others – especially when there is a possibility that a person could suffer from ANY of these diseases, whether they are well-know or not. To me, it makes sense that health and social care professionals, and the public too, should be made aware of and be given information about all sorts of illnesses and problems that could affect them. Not in a “scaremongering” manner – but they should be given an accurate overview of the facts, the risks, and of how to prevent such problems or illnesses.
I do completely agree that FASD should NOT be ruled out or overlooked as a potential cause of some problems that children may be seen to exhibit. When a medical professional is diagnosing ANY illness, he or she should NEVER fail to consider DIFFERENTIAL DIAGNOSES. I am a living example of this. I have Endometriosis, which both my own G.P., and also a trained Gynaecologist, initially failed to spot and to correctly diagnose. This lead to my having to suffer with untreated symptoms for far longer than should have been necessary, or appropriate. The reason why they made this grave error was because a) they only considered very simple, obvious causes for my symptoms and thus jumped to the wrong diagnostic conclusion, and b) they failed to consider Endometriosis at all, probably because it is not a very well-known disease.
If health and care professionals DO NOT consider all the various options then they are at risk of coming to the wrong conclusions. This can lead to unnecessary or inaccurate treatment; also to the fact that the actual illness is NOT being treated at all. Obviously, the implications of such a situation could be pretty disastrous.
FASD is a condition that definitely should be considered as a potential cause of developmental, emotional and behavioural problems in children and young people. This is particularly important, as pointed out in Kristina Thordal’s comment above, because it may be completely preventable. At present, there appears to be much confusion regarding societal attitudes towards drinking alcohol – especially for pregnant women. There does not seem to be consistency in the messages that we are given. I suspect that many people, both men and women, are still unsure as to what their alcohol consumption actually is. This is because lots of people remain unclear as to what actually constitutes a unit of alcohol. Furthermore, they are then unclear as to what is an acceptable amount of alcohol to consume, both daily and on a longer-term basis. If people do not even know what represents a unit, then it is obvious that they cannot easily keep track of how many units they consume. This is compounded by our societal attitude to drink, which has seen it become increasingly associated with “having a good time” and with “partying” (especially at weekend). UK society has significant problems both with lack of understanding of overall alcohol consumption, and also with the phenomenon known as “binge drinking” in which foolish people consume huge amounts of alcohol in a very short space of time (most often occurring at weekends). Pregnant women are particularly affected by the problem of inconsistency in messages, plus lack of general understanding of units and what is an acceptable amount to drink. The fact is that there DOES NOT yet seem to be a clear message in the UK that tells men and women – and especially pregnant women – just what amount of alcohol it is safe to drink. And when I say safe, I mean both for them, and for an unborn foetus!
There are other factors, too, which I feel should be considered when asking that FASD be taken more seriously. These include the fact mentioned above – that in the UK, our society has come to associate drinking alcohol with “having a good time”. It seems that some people cannot go out and enjoy themselves without getting drunk. Booze and fun have become synonymous – something that could be blamed on advertising which often shows people drinking, partying and enjoying themselves. Makers of alcoholic drinks often use this “fun” image to sell their products. Alas, this association of alcohol and fun gets inside people’s heads, making it much harder for some people to accept that alcohol (especially when one is drunk) is NOT always fun. The association of alcohol and fun leads to people turning a blind eye to the more damaging effects of alcohol consumption. Maybe it is time for a more responsible attitude both towards alcohol, and towards the advertising of alcoholic drinks?
The sad fact is that, in a society where we see the combination of effects caused by lack of understanding of what is a safe number of alcoholic units to consume, plus an attitude that foolishly ignores the dangers of alcohol because alcohol is promoted a fun, it is very likely that some people simply WILL NOT understand (or even care about) the impact of their alcohol consumption. This includes pregnant women, and couples trying to conceive.
I agree with Carrie (above) whose comment asks for more research into FASD and its causes, plus more support for people with the syndrome. Our society needs to fully understand the impact of alcohol consumption, and to reach a consensus as to what is a safe amount (if any) to drink. We need to understand the impact of alcohol consumption amongst different types and groups of people (e.g. men, women, teens, pregnant women) and how the impact differs. We need then to apply this understanding to guidelines that advise about safe drinking. We need also to understand why some people “binge drink” and what specific problems this could lead to. We need to start work on breaking down people’s association between going out and getting drunk, and having fun. All of this information, and more, needs to be imparted to health and social care professionals so that thy have a better understanding of alcohol and its impact upon the health of the general public.
We also need to appreciate that there may already be individuals out there who could have FASD, but who have been misdiagnosed because the syndrome is neither well-known, nor well-understood. Might there be children who are currently labelled as “learning disabled”, or perhaps “Autistic spectrum”, or “mentally ill” who actually have FASD, but because their parents were not questioned as to their alcohol consumption, FASD was not even considered as a possible cause of the child’s issues? My sister-in-law has an apparently learning disabled child who maybe should have been checked for FASD. certainly, after giving birth, her alcohol consumption was astronomical! I recall going to family get-togethers at which my sister-in-law consumed glass after glass of wine, plus cocktails and mixers – sometimes in front of her little children. And yes, she got drunk – not just “merry”! I feel that she may represent a perfect example of someone who has little understanding of the impact of inappropriate alcohol consumption – including upon parenting. Personally, I think it is deeply inappropriate to become very obviously inebriated in front of one’s children. Ought people not to have been asking whether her alcohol consumption had been the same, or similar, whilst she was pregnant? Surely this might have helped to better earmark appropriate support and care for her apparently learning disabled child. At the end of the day, it is the CHILD that we should be thinking of, because it is the CHILD who pays the price.
In cases where FASD can clearly be shown to exist, the child pays the price for the parent’s drinking habits. Thus, it is clear that more information is needed to ensure that the public understand why alcohol consumption is not recommended during pregnancy. Also, information should be made available to males, that informs them about the impact of alcohol consumption upon sperm quality and production. We should remember that for a couple to have a baby, both male and female are involved and thus should be involved in keeping themselves healthy so that chances of conceiving a healthy baby are optimized. Furthermore, men and women in relationships need to be able to support each-other to live healthily, and this includes supporting healthy attitudes towards alcohol consumption. If one or other in a couple maybe drinks too much, then they need the help of the other partner to reduce their alcohol intake. So, delivery of societal messages regarding alcohol consumption should be aimed equally at both genders.