The government has recently published a health needs assessment document for people living with Fetal Alcohol Spectrum Disorder (FASD), their carers and their families. The document hopes to provide an accessible and reliable source of information on the condition, and identifies the struggles faced by people with FASD and where their needs are not being met. This briefing considers some of the key elements of the document and the implications this could have for people living with the condition.
What is FASD and what is the link with learning disability?
Fetal Alcohol Spectrum Disorder (FASD) is a condition caused by pre-natal exposure to alcohol, causing a diverse range of effects that can impact the individual throughout their lifetime.
FASD is linked to a range of co-morbid conditions including a range of neurodevelopmental problems, which can create great difficulties for individuals both during their childhood and adult life.
These include: an impaired ability to learn, remember and make judgements; a lack of awareness of social boundaries; an inability to grasp instructions; problems with language; hyperactivity; and poor attention.
According to the British Medical Association (BMA), FASD is the most common, non-genetic cause of learning disability in the UK, although it is often misdiagnosed as autism or Attention Deficit Hyperactivity Disorder (ADHD).
In fact, The Adolescent and Children’s Trust (TACT) report that a disproportionate number of looked after children have FASD and are often misdiagnosed as having behavioural problems.
As a result of these co-morbid conditions, school disruptions, substance misuse, inappropriate behaviours, trouble with the law, incarceration, residential and employment instability, and mental disorders are experienced much more frequently among individuals with FASD than in the general population.
The impact on the individual and their families
The effects of FASD are lifelong and can significantly impact the life of the individual and their family; and while some effects of the condition can improve over time, it is common for secondary disabilities to develop as a result of other problems.
This can affect an individual’s ability to navigate their daily life and become independent adults, but because research is limited, the impact this has on adults is less well known.
The government’s health needs assessment document considers two studies which illustrate the potential extent of the problem. Streissguth et al. (2004) looked at a range of adverse life outcomes in the US, and found that the life span prevalence was 61% for disrupted school experiences, 60% for trouble with the law, 50% for confinement (in detention, jail, prison, or a psychiatric or alcohol or drug inpatient setting), 49% for inappropriate sexual behaviours on repeated occasions, and 35% for alcohol or drug problems.
Significantly, the study found a two-to-four-fold reduction in the odds of developing adverse outcomes if a diagnosis was made before the age of 12.
Similarly, a small 20-year study in Germany followed 37 patients who showed very poor outcomes following a psychosocial and career interview and found that nearly half (49%) had received special education only, just 14 (38%) had passed primary school, and only 5 (13%) had a secondary school education or had ever held an ‘ordinary’ job.
This range of potential adverse outcomes incurs personal costs to individuals and families affected by FASD, but also to society as a whole. In the UK, the estimated cost of FASD is around £2 billion per year, according to the BMA.
One study (Easton B et al., 2014) considered productivity losses in Canada as a result of FASD. They found that 0.03% of the Canadian workforce experiences a loss of productivity because of impairments caused by FASD. This translated in an aggregated loss to the economy of between CND $418 million (£258 million) to $1.08 billion (£0.67 billion).
While these numbers are substantial for society, they also have a significant impact on the individual, with the study estimating that a worker with FASD could be expected to earn 7.8% to 16.2% less than the general population.
The link between FASD and the criminal justice system
Criminal justice system (CJS) involvement has long been identified as a significant adverse outcome for many individuals with FASD, and individuals with FASD are believed to be overrepresented in correctional settings – just as those with learning disabilities and mental health conditions.
This overrepresentation is thought to be stem from a number of causes. Firstly, people with FASD may not always understand the consequences of negative behaviour, meaning standard forms of discipline are usually ineffective.
Secondly, FASD may increase susceptibility to victimisation meaning those with the condition are more easily taken advantage of. They are also are more vulnerable to being coerced in to ‘improper interrogation procedures’ and being treated unfairly.
This means that FASD is not only a contributory factor when a crime is committed, but, may also limit the person’s ability to engage effectively with judicial proceedings, ultimately leading to more inappropriate sentences.
This problem is only exacerbated by the fact that courts often do not recognise or understand FASD and there is little support or help for people with the condition when faced with such a situation.
What needs to happen next
It is clear that FASD poses significant challenges to the individuals and families affected by the condition, as well as society as a whole. To tackle these issues, the health needs assessment document explores various strategies that could help to improve outcomes for people living with FASD.
Significantly, the documents highlights various studies which suggest that early diagnosis of FASD reduces the chances of adverse life outcomes. Not only does an early diagnosis create better opportunities to intervene, but it also reduces the rate of secondary disabilities and issues such as exclusion from school.
Literature also suggests that a diagnosis provides relief and validation for parents and the individual, and helps them to understand why the person behaves the way they do.
However, currently diagnoses are complex and difficult to obtain due to lack of reliability in distant personal histories and the small number of specialists with the training and experience necessary.
Awareness and prevention
Developing services that support diagnosis and management is therefore crucial to improve outcomes, as well as increasing public awareness of the condition as a method of prevention.
The document states that it is “necessary to take a wide-ranging approach to prevention” which compliments public health approaches to family planning and contraception.
This should include: broad population efforts designed to raise awareness about the risks of alcohol-exposed pregnancies; targeted screening, counselling and interventions with women seen as being in, or at risk of, alcohol-exposed pregnancies; and highly targeted work with the aim of minimising the likelihood of another pregnancy resulting in FASD.
The document also highlights the need for better training and awareness of FASD for healthcare professionals, as “care and support for those affected by FASD could be developed by addressing deficits in professional understanding of the condition.”
Tackling overrepresentation in the CJS
This increased awareness should also be applied to correctional settings (and in the courtroom) to reduce the overrepresentation of people with FASD in the CJS.
One study in the government’s report suggests that screening should become a requirement in all correctional settings to ensure they are treated fairly throughout the justice process.
Ultimately, there are still numerous gaps in literature regarding the prevalence rates of the condition, the outcomes for individuals and the intersections between FASD and the CJS.
To protect people with FASD from negative outcomes, more research is desperately needed to improve the approach to diagnosis as well as the understanding of the pathology underlying the condition. The government’s report concludes that in England, our understanding of the problem is “still lacking”.
Developing innovative approaches to support those with FASD is therefore a priority for the government while we wait for new research to emerge.