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Social workers are the primary profession to work with children and young people who are affected by their family’s alcohol and substance use and that they, therefore, require mandatory training in FASD. (Thomas, 2011)
Social workers work with the most vulnerable members of our communities. In order to be diagnosed with FASD an individual will have pervasive and long-standing brain dysfunction, which is defined as severe neurodevelopmental impairment. People with FASD are those vulnerable individuals, and often the ones for whom traditional interventions are not working. It is a fair assumption that everyone working in social care will encounter people with FASD.
The DHSC FASD Health Needs Assessment (2021) quotes a study that showed 27% of children in Peterborough had FASD and that 75% of those freed for adoption were exposed to alcohol in the womb. (Gregory, 2015)
34% of children looked after
75% of medicals for adoption
FASD is a children’s social care issue.
This was recognised more than 15 years ago when the statutory guidance “Promoting the health and wellbeing of looking after children” (2015) said that those undertaking medicals should pay particular attention to health conditions that may be more prevalent in looked after children and which might have been misdiagnosed. It highlights Fetal Alcohol Syndrome (now FASD according to new diagnostic guidelines).
FASD is an adult social care issue.
FASD is a lifelong condition. It will not disappear as children transition into adulthood. The DHSC FASD Health Needs Assessment recognises this.
FASD is a social care issue beyond those in care or previously looked after
Research shows that 2-4% of the population have FASD (McCarthy et al, 2021). Many with FASD will not have had social care intervention but require support.
FASD cases require complex case management and the fact that FASD is not core training may have contributed to the death of a child as described in Two Tragedies. (Badry, 2013; Pringle, 2014). More recently in Derbyshire (2020) there has been a multi-agency learning review following the death of a young adult with FASD.
Without the necessary knowledge and up-to-date training, a social worker may not understand the significance of asking and recording the right questions or seeking appropriate support and guidance for people with FASD and the families they live with.
This lack of informed knowledge can have a significant impact on decisions that are made, which referrals a child receives, the decisions that are made about support in the community, and can make the process of getting a diagnosis harder.
FASD should be considered in the following areas of Social Work:
Where substance misuse is present in referrals responses appear uneven depending on the substance. There is well-documented evidence that in situations where there are recordings of multiple substance use then alcohol is downgraded. In fact, in pregnancy alcohol can be much more damaging and have longer effects than the impact of heroin on the unborn child.
Social Work involvement in families where there is alcohol misuse may come to the attention of social services later and follow a different route through the social care system than a family where there is drug misuse.
These delays in offering support to the family may have further impact on the development and psychological wellbeing of the children and on the family’s ability to function. (Adamson and Templeton)
Most mothers who misuse drugs also drink alcohol. Therefore, any level of alcohol use must be recorded as it may be impossible to get the correct diagnosis without it in the future for an affected child. (Preece and Riley, 2011)
According to the Chief Medical Officers (2016), there is no known safe level of alcohol use in pregnancy. This means that any pregnancy that was exposed to any amount of alcohol could be affected and it should, therefore, be recorded. Without the recording it can become almost impossible to get a diagnosis of FASD, leading to further stress and inappropriate decision-making.
Research into birth mothers of children with FASD has showed that many were in vulnerable groups:
95% of birth mothers had Mental Health problems
90% experienced physical/sexual abuse
60% were below the poverty line
77% had Post Traumatic Stress Disorder
Without the necessary support, alcohol may have been used as a form of Self-medication. (Astley et al., 2000)
However other research has shown that the groups of women most likely to continue drinking alcohol in pregnancy are educated, older mothers.
It is crucial to consider whether there has been prenatal alcohol exposure in all assessments, regardless of age or life experience. With adoptive families who struggle or adults who were adopted, the chance of FASD being a risk factor is even higher.
Dialogue and true listening, is an art more than a science and is imperative in trying to build up a picture of life for the family before the child was conceived, during the pregnancy as well as after. (Parton N and O’Byrne P, 2000)
FASD is an important issue in fostering and adoption. Across the whole of the UK, there were an estimated 107,317 children in care. It is likely that nearly 29,000 of them will have FASD and most will be undiagnosed. The number of UK children seen with complex behaviour/difficulties where there is a history of exposure to alcohol and/or drugs prenatally appears to be increasing at an alarming rate. There is a clear need for greater understanding of FASD within all social care, health and education provision.
Children and young people with FASD are living in a variety of settings including:
However, it is imperative that assessments consider the needs of the young people and also what is available to support the family. There can be a significant risk of parent or carer stress and anxiety/ depression if the family haven’t got the support they need as well as FASD training for families. There can also be an effect on other children within the family and the stresses have led to family breakdown in previous situations. It is not unusual for FASD to be at the heart of adoption breakdowns. Social care staff should be involved to help ensure that this does not happen.
Social care professionals have a significant role in the diagnosis of FASD
In the past there has been a history of presuming a healthy baby does not have FASD. Given that less than 10% of people with FASD exhibit the sentinel facial features, FASD should not be ruled out in young children where there may have been prenatal alcohol exposure at any level. The current diagnostic guideline across Scotland, England and Wales says that, “Prenatal alcohol exposure should be actively considered as a possible underlying cause for neurodevelopmental delay, or an unexplained departure from a typical developmental profile.” (SIGN 156, accepted by NICE). Any child exposed prenatally to alcohol should be noted for follow up. As a child matures it can become increasingly difficult to notice the sentinel facial features that were evident as toddler and therefore accurate record keeping is essential in order to make a diagnosis.
It is also important to consider that within a sibling group, children can be affected differently. If one child suspected of having FASD, they all should be assessed or noted for follow up. If one child has FASD then there is a stronger possibility that others will have it too. The impact of multiple siblings in a family having FASD should be considered when matching.
Consider whether there is a history of prenatal alcohol exposure (PAE)
New research shows that children with both prenatal alcohol exposure (PAE) and a history of trauma appear to function similarly to children with PAE only.
Those with PAE only tend to have more severe difficulties than children with trauma alone.
Therefore, the difficulties seen in children with both of these exposures seem to be primarily caused by PAE rather than childhood trauma.
Children seen in care, school, or in a medical setting, who have both PAE and a history of trauma, should be thought of more as a child with FASD than a child with a history of trauma.
Strategies designed specifically for FASD may be more effective than those designed for trauma. (Price, 2019)
FASD is lifelong. Children with FASD turn into adults with FASD but their presentations and needs will change. The following assessments should be redone as they show current functional level:
This can show the spiky profile of a person with FASD and in some cases shows that their functional ability in some areas can be in the bottom percentiles for their age-range. Stress and anxiety can make the spikes higher and the troughs deeper.
People with FASD who have never been diagnosed may previously have been diagnosed with one or more of the following:
It may be appropriate for people with FASD to have secondary diagnoses for other conditions if they meet the thresholds needed in assessment. However, the organic brain damage caused in the womb should always be considered as the primary diagnosis.
The appropriate living arrangements should only be made following the functionality assessments. Some people with FASD live:
A person with FASD’s abilities should not be assumed.
Where adults with FASD have received poor levels of support they have been vulnerable to:
Any mental capacity and best interest assessments should be conducted by somebody who has undertaken FASD training.
The aforementioned functional assessments can help to provide insight into support needs.
A UK pilot study (Buckard and Mukherjee, 2016) showed supported adults with FASD in the UK had found their way around some things they struggled with but still faced challenges:
Supported adults with FASD have the opportunity to live fulfilled lives.
The National Organisation for FASD, The Priory, High Street
Ware, Hertfordshire. SG12 9AL
England
Helpline: 0208 458 5951
