Fetal Alcohol Spectrum Disorder

The Connection to the Criminal Justice System

Association for Child and Adolescent Mental Health -
(ACAMH)

Podcast FASD - Understanding the Diagnosis

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At the last quarterly scrutiny panel hearing for Home Affairs, the chair for the Children’s, Education, and Home Affairs scrutiny panel asked the Minister for Home Affairs the following question:

“"Dr. Svetlana Popova, MD, PhDs, (a senior scientist at the Institute for Mental Health Policy Research at CAMH) reported in 2011 (Popova et al., 2011) that juveniles with fetal alcohol spectrum disorder are 19 times more likely to be incarcerated than their neurotypical peers.”

To that end, what steps is the Minister taking to identify and support individuals with FASD who have become involved with the criminal justice system?"

What is Fetal Alcohol Spectrum Disorder?

Fetal alcohol spectrum disorder (“FASD”) is a relatively unknown invisible brain-based disability, which is caused by prenatal alcohol exposure; taking other teratogens –especially heroine in combination with alcohol can exacerbate the effects of the alcohol. Drugs alone do not damage the foetus.

Conservatively, FASD is three time more prevalent that autism spectrum disorder, yet diagnosis is rare – due to the limited knowledge and understanding of the disability.

FASD is not a childhood condition – it is a lifelong disability for which there is no cure. It is permanent brain damage. FASD is neither a mental health condition, diagnosis, nor addiction.

It cannot be assessed on-island, and there is no existing professional support.

According to the UK’s chief medical officer, and this is a view supported by the World Health Organisation, there is no safe amount of alcohol that can be consumed during

pregnancy. Just one glass of alcohol can damage the central nervous system, which

develops for the duration of the pregnancy.

According to research undertaken by The Lancet, the UK has the fourth highest rate of prenatal alcohol exposure in the world, fourth only to Ireland (1st), then Belarus, then

Denmark. It is likely that Jersey will follow a similar trend to that of the UK, if not

higher especially when you take into consideration the island’s relationship with alcohol,

as highlighted in the recently released alcohol study.

Whilst diagnostic terms such as fetal alcohol syndrome or alcohol related

neurodevelopmental disorder may be familiar to you, these are now an obsolete

diagnostic term, and individuals with FASD receive a diagnosis of either FASD with

sentinel facial features or FASD without sentinel facial features.

Symptoms of FASD

There are 428 conditions associated with FASD, and these conditions can include ADHD, autism, and epilepsy. All 428 conditions can range from non-existent to severe, and

because FASD is heterogeneous, no two people with FASD will present in the same way.

FASD is frequently overlooked when more readily identifiable conditions are identified,
such as ADHD. ADHD will cooccur in approximately 80% of FASD cases, whilst autism

will co-occur in c.50% of FASD cases.

In 10% of FASD cases, there will be facial abnormalities (sentinel facial features), and the most common features are a thin upper lip and a smooth or smoother philtrum.

Microcephaly is also usually present.

Individuals with FASD will usually present with:

Extreme emotional dysregulation and volatility;
Impulsivity and hyperactivity;
Poor memory and attention;
Learning and intellectual disabilities;
Speech and language delays and deficits;
Social and sensory challenges; and
Poor co-ordination and balance.

FASD and Trauma

Prenatal alcohol exposure can cause prenatal trauma or toxic stress to the developing

foetus – the presence of alcohol in the uterus causes the brain to release cortisol,

which can cause brain damage, too. In addition, any trauma caused to the mother

through, for example, domestic violence, can also release cortisol into the uterus.

Early years’ adversity – otherwise known as ACEs can also exacerbate the symptoms

of FASD.

Unfortunately, the release of cortisol into the foetus or small child’s brain can cause

trauma, and, as a result, further cortisol is released, which again targets the foetus,

which causes further cortisol release, and so on and so forth. This is called the

hypothalamic-pituitary-adrenal axis.

Prenatal alcohol exposure can damage and sensitise the body’s stress response system

and it can leave the child, young person, young adult, or adult in a constant state of

hypervigilance. This means that relatively minor stressors can result in significant

emotional dysregulation.

Emotional Dysregulation

One of the most consistent symptoms of FASD is extreme emotional dysregulation. Those with FASD can react to threats or perceived threats in a seemingly disproportionate manner. Such dysregulation can present itself as aggression, violence, and verbal abuse.

The FASD person’s emotional brain (the limbic system) senses the actual or perceived threat and reacts. In neurotypical people, the brain’s cortex – the outer brain – which is the logical, rational, and thinking part of the brain – rationalises and makes sense of the threat and “turns down” the brain’s emotional response, otherwise known as the amygdala.

However, for people with FASD, the prefrontal cortex is usually damaged (it is the part of the brain that is most susceptible to prenatal alcohol exposure), and therefore they simply cannot control their dysregulation. Their body’s fire alarm is ringing and the off button cannot be found. In any event, the prefrontal cortex does not fully develop in neurotypical individuals until about the age of 25 years.

Abstract Concepts

People with FASD struggle with abstract concepts – they do not understand rules and laws and how they apply to them (although they will know how they apply to other people), nor do they understand time, money, and tidiness.

Most pertinently, they will not understand the concept of personal ownership, which leads them to take things belonging to other people, which – to the untrained eye – looks like larceny or theft.

The brain’s ability to understand abstract concepts is located in the rostro-lateral prefrontal cortex, and, as stated elsewhere in this document, the prefrontal cortex is the part of the brain that is most susceptible to prenatal alcohol exposure.

Memory

Nearly all people with FASD will have significant problems with memory, and this can include long-term memory, short-term memory, working memory, autobiographical memory, spatial memory, procedural memory, episodic memory, prospective memory, and semantic memory.

For most people with FASD, their long-term memory is like a disorganised filing cabinet with missing files. This is problematic, because when they try to recall events, they cannot. A memory timeline may have significant gaps in.

In this instance, the individual will fill these gaps with memories from other similar events or they will completely fabricate information. This is their brain “playing tricks” on them – they will genuinely believe the narrative they are talking to you about. To the untrained eye, it appears like they are lying – but they are not lying, they are confabulating. Confabulation is a recognised facet of FASD.

Addiction

There is growing evidence to show that prenatal alcohol exposure can damage the ventral tegmental area – the part of the brain that is responsible for reward. Those with FASD do not understand the concept of reward and consequences, unless such a reward or consequence is immediate. However, and more pertinently, damage to the ventral tegmental area (as a result of prenatal alcohol exposure, trauma, or both) can turn down the dopamine response. This means that individuals with an impaired dopamine response are more likely to become addicted to, for example, alcohol, drugs, pornography, or gambling.

Vulnerability

Persons with FASD are highly vulnerable to more dominant and coercive individuals.

They have a desperate need to be liked and please others, and they cannot readily see

the consequences of their actions. They do not sense or see danger in people or

situations in the same way neurotypical people can. They are impulsive and they do not

see risk.

The average life expectancy of someone with FASD is just 34 years. Most will commit

suicide owing to latent vulnerabilities in their preteen years turning into mental health

challenges in their teen and young adult years. Others may be killed simply because they forgot to look for cars when crossing the road.

FASD and the Challenges for the Criminal Justice System

The common adage when it comes to individuals, particularly children, with FASD is “brain, not blame”. Therefore, please consider the following situations that people with FASD might find themselves involved in because of their brain impairments:

Does someone with FASD intentionally steal something from a shop, or do they not understand laws and personal ownership?

Does someone with FASD who commits actual bodily harm intend to hurt their victim, or do they have a sensitised stress response and no way of calming down their emotional brain due to a damaged prefrontal cortex?

Has someone with FASD, who has acted as a drugs mule, been easily manipulated and been unable to see the consequences of their actions?

Does someone with FASD appear to lie under oath in court when, in actual fact, they cannot remember what happened and they are confabulating?

Does a young adult with FASD have their sentence increased because it is perceived bythe court they have no remorse for their actions, when, in actual fact, they are unable to understand the victim’s emotions (as well as their own (alexithymia))?

Does someone with FASD turn to the illegal pornography because of an impaired dopamine response, no understanding of what is right or wrong, or no understanding of how the law applies to them?

Does someone with FASD admit to a crime they did not commit when interviewed under caution because they do not understand the consequences of their actions as they just want the questioning to end?

When considering the above offences, and what this letter explains about FASD, do people with FASD have criminal intention owing to their emotional, executive, cognitive, social, and other brain-based deficits?

With regret, punishments do not work for people with FASD, unless they are instant and directly linked to what they did wrong.

We all have nine brain domains, and to be diagnosed with FASD, you need to have at least three severely impaired domains. Understanding the concept of a punishment

linked to an undesirable action requires six functioning brain domains –most people with FASD will have at least five severely impaired brain domains.

This means the use of community service orders, suspended prison sentences, or

custodial sentences may be meaningless and ineffective for people with FASD.

They will offend again unless robust strategies are put in place, and at the earliest

possible opportunity. They cannot learn from their mistakes and they do not understand cause and effect.

Without investing in our knowledge and understanding of FASD, are we setting up those with FASD to fail? And are we setting them up to fail time and time again? It is important to state that those with FASD rarely learn from previous mistakes owing to a damaged

prefrontal cortex.

What can you do to help identify FASD in people who come to your attention?

There are a number of ways that you could potentially identify that a suspect, defendant, prisoner, or someone working with the Probation Service may have FASD in the absence of an FASD diagnosis. It is essential to take an holistic view.

Do they have any facial features? Do they have a thin upper lip, a less pronounced

philtrum, smaller eyelid openings, or a larger than normal fold of skin near the inner

corner of their eyes?

However, sentinel facial features are only present in 10% of FASD cases.

Have they ever been a looked after child? Have they ever been fostered, adopted, or

under the equivalent of a special guardianship order? Gregory et al (2015), in a UK-based study in Peterborough, found that 27 per cent of children in care met the

diagnostic threshold for FASD. The same study reported a history of prenatal
alcohol exposure in 55 out of 160 health assessments for children in care (34 per cent),

and 34 out of 45 medical assessments for adoption (75 per cent). One can therefore extrapolate from these figures that a significant proportion of children on the case load of a

public children law solicitor may be affected by FASD.

Can direct or anecdotal evidence be obtained from family members, social workers or healthcare professionals, who may have come into contact with the individual and

their family, as this could show they may have been prenatally exposed to alcohol?

Do they have four or more Adverse Childhood Experiences? Research has found that

there is a distinct correlation between prenatal alcohol exposure and four or more ACEs.

Poor literacy, social, and living skills, dysmaturity, poor organisation and planning, yet good expressive language skills are all indicators of potential FASD.

Do medical records indicate an iron deficiency at birth? Although this research is in its

infancy, there is suggestion that prenatal alcohol exposure reduces and impairs the

amount of iron a foetus is exposed to whilst in utero. Iron is essential during pregnancy

or the healthy development of organs and the central nervous system. Scientists know

that prenatal alcohol exposure may cause FASD, but they have remained unsure as to
the mechanism that causes it – an iron deficiency might be that mechanism.

Does the individual present as being depressed, or do they have a history of mental

health issues? According to research, c.90% of people with FASD will have mental health challenges.

Can the individual’s school supply you with information about how they achieved in

education?

Refer the individual to someone who can diagnose FASD, although there are not that

many professionals who can do this and certainly no one in Jersey can at this time.

Investigations and assessments into, inter alia, executive function, adaptive function,

memory, language, and general cognition (IQ) should be assessed.

Ask the individual to repeat something complex you have said back to them back to you. This could be, for example, a list of instructions. If they cannot, this could be indicative

of poor working memory, which is usually impacted by prenatal alcohol exposure. It

might also show a language disorder.

It takes the average person with FASD about 22 seconds to process language.

Why is Identifying FASD Important?

Primarily, emotional dysregulation, poor abstract thinking skills, and poor social

skills and social vulnerabilities (including addiction) may predispose individuals with

FASD to criminal activity. Poor memory, confabulation, and lack of empathy can further

hinder someone who is accused of a criminal offence.

Poor awareness of what they did wrong, coupled with a lack of understanding of cause

and effect and inadequate and ineffective strategies can compound matters and lead to a vicious circle of criminal activity, as they will usually have severely impaired executive

function which means they are likely to frequently repeat mistakes.

A person with a degenerative brain condition, such as dementia, may, for example, on

occasion indecently expose themselves in public, or they may take items from shops and forget to pay for them. And these behaviours, despite police intervention, may reoccur. However, the defence will be the nature of the person’s illness, and it would be highly

unlikely that this person would be prosecuted due to their dementia.

Although FASD is not degenerative, it shares some hallmarks with dementia, especially

frontal-temporal dementia, which affects similar brain regions to that of FASD.

It is highly unlikely for many people with FASD that their FASD has ever been identified –indeed, Popova et al., 2019 identified that FASD diagnosis rates are under 1% of all

those affected. In Jersey, especially, FASD awareness is minimal, at best, and therefore

diagnosis is virtually non-existent.

Is, therefore, incarceration at HMP La Moye effective for people with FASD?

Punishments rarely work, and even if they did, is it ethical to punish someone with a brain based disability they have no control over, especially where their FASD disability has

never been identified and they have been left to fend for themselves.

There must surely be a better way?
Looking at an 18-year-old individual with FASD, they may have the:
Expressive language skills of a 20-year-old (which might mask cognitive deficits);
Reading ability of a 16-year-old;
Living skills of an 11-year-old;
Money and time concepts of an 8-year-old;
Social skills of a 7-year-old; and
Comprehension and social maturity of a 6-year-old.

Who is FASD Jersey?

FASD Jersey is a locally based grassroots support and advice group that has

acquired its knowledge through significant lived experience and research.

It established that there is a tangible lacuna in the island in respect of FASD
knowledge and understanding by professional services.

Currently, there are no on island professional support services in Jersey that are

able to adequately support individuals with FASD.

FASD Jersey is not a medically qualified group and information it provides must not be

taken as medical advice or diagnosis. However, with such significant lived experience,

coupled with exposure to most public services in Jersey, it is easy to establish that FASD Jersey is the only source of robust and relevant information relating to FASD in the
island.

If you would like more information about FASD, please feel free to contact us at

fasdjersey@outlook.com