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what is FASD?

The Full Story?

Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder resulting from Prenatal Alcohol Exposure (PAE). Individuals with FASD can experience complex behavioural and intellectual problems that persist throughout the lifespan, and can become increasingly complicated, if unsupported. The need for early and accurate diagnosis is critical for improving outcomes and quality of life.

The Basics:

Every child with FASD presents slightly differently; we call this the spectrum of FASD where what is seen in one child might not be seen in another, here is a list of commonly seen signs and symptoms:

Failure to thrive (baby), feeding difficulties
Sleeping difficulties
Poor social skills/lack of boundaries
Slower information processing
Memory; particularly working/short term, difficulty storing & retrieving information, inconsistent
Motor control issues, balance, rhythm, strength, motor planning and sequencing
Struggle to regulate; angry or frustrated & may take longer to calm, struggle to modulate their emotional state.
Cognition; dealing with abstract concepts, such as maths, money management, time concepts
Extreme under or over-sensitivity to sensory input
Attention; struggle with selective, focused, sustained, and flexible attention, for example, in concentration, hyperactivity and impulsivity
Difficulty following directions or connecting step instructions
Executive Functioning; struggle to be able to find something to occupy themselves, struggle with their capacity for goal-directed behaviour, including self-regulation, working memory, planning, organising
Difficulty linking actions with consequences
Poor judgment & impulsiveness
Easily influenced by others
Difficulty generalising knowledge
Difficulty understanding abstract concepts
Difficulty understanding cause-&-effect relationships
May struggle with transitions
May be prone to confabulation (making stories up using pieces of information from several memories; they do this without thinking it is not true)
Learning difficulties (commonly but not limited to maths)
Language - slow auditory processing pace, can struggle with using the right words for the right context, receptive language is often much lower than expressive language

Strengths

Friendly, likable: May be outgoing & sociable & have little anxiety about strangers
Verbal, chatty: May be very socially interested (but not necessarily socially skilled)
Helpful, hard-working: If you ask, they will do it. They can be very good workers with the right job & training
Determined, resilient: They don’t hold grudges & will come back if rejected. Every day is a new day!
Want to be liked: They will do whatever they can to have friends

What else can FASD look like?

Attention deficit disorder
Autism
Reactive attachment disorder
Sensory processing disorder
Bipolar disorder

There are over 400 co-morbid conditions that relate to FASD

ONLY 10% of children young people and adults with FASD have sentinel features:

Formerly known as:

Partial Fetal Alcohol Syndrome (pFAS)
Alcohol-Related neurological Disorder (ARND)
Alcohol-Related Birth Defects (ARBD)
or Neurobehavioural Disorder-Prenatal Alcohol Exposure (NDPAE)

10% of children will have the facial features, 'sentinel features' but it does not determine if the impact of the alcohol is 'more severe' however it can determines at what stage in pregnancy the alcohol was consumed. Read more of sentinal features here

90% of children, young people and adults with FASD will not have any facial features but will have complex needs and brain

damage.

This short film was commissioned by FASD Awareness, to draw a greater awareness of the condition and its impact on individuals, families, care-givers and society in general: to watch click HERE

FASD is a lifelong neurodevelopmental condition. FASD is a spectrum and because different aspects of a foetus (including its brain) develop at different points throughout pregnancy, prenatal alcohol exposure can affect the development of various physical, emotional, behavioural, and neurological functions.

“The severity and symptoms vary, based on how much and when alcohol was consumed, as well as other factors in the mother's life such as stress levels, nutrition, and environmental influences. The effects are also influenced by genetic factors and the body's ability to break down alcohol.”[1]

"The effects of Prenatal Alcohol Exposure (PAE) are complex, multifaceted and vary by individual. These effects can include growth deficits, physical defects, facial abnormalities and central nervous system dysfunction, the latter of which is considered the most significant and persistent, requiring life-long supports and resources." [2]

New diagnostic terms:

1. 'Fetal Alcohol Spectrum Disorder with sentinel facial features' (formerly known as Foetal Alcohol Syndrome); Less than 10% of those with FASD have these features.

2. 'Fetal Alcohol Spectrum Disorder without sentinel facial features': more than 90% have NO sentinel features

More than 90% of individuals who have FASD do not have physical signs, which means that it can also be termed a ‘hidden disability’

Fetal Alcohol Spectrum Disorder results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum disorder where each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong irreversible neurodevelopmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning.

What we do know is that alcohol can pass through the placenta and spread rapidly to the amniotic fluid surrounding the foetus. The alcohol is removed from the fluid far more slowly than the mother eliminates it from her own system, meaning that it accumulates. This creates a ‘reservoir’ of alcohol around the foetus, which will be swallowed and circulated in the foetus’ system. The foetus only has a limited ability to process, or metabolise, the alcohol compared to the mother, and so the effect is prolonged.

“There is no ‘mild’ FASD.” Source: FASD Health Needs Assessment for England (2021)

Although FASD is a lifelong incurable condition, early intervention and the right support can make a big difference. It is important to recognise and nurture the individual strengths and talents of children, young people & adults with FASD.

How common is FASD?

FASD in the UK is an under-researched area and our understanding of its prevalence remains in its infancy.

What do we know so far?

“FASD is thought to be 3 to 5 times more prevalent than Autistic Spectrum Disorders” Source: Adoption UK

“Research shows that up to 75% of children in care and leaving it will have been exposed to alcohol in the womb, where over 40% of women in the UK use alcohol during pregnancy, making the UK the 4th highest rate of alcohol exposed pregnancies in the world". Source: Lancet Global Health

FASD is thought to be one of, if not the most common environmental (i.e., non-genetic) cause of learning disability in the UK, with it affecting at least as many people as autism. [6]

Research has found that alcohol use during pregnancy is highly prevalent in the UK, with estimations being at around 40% placing the UK 4th in the world for the number of pregnancies exposed to alcohol. This strongly suggests that prevalence of FASD is likely to be higher than we currently have evidence for. Source Lancet Report [4 & 5]

“Prenatal alcohol exposure should be actively considered as a possible underlying cause for neurodevelopmental delay.” Source: SIGN 156, Children and Young People Prenatally Exposed to Alcohol” (2019) [5]

Can children have other diagnoses alongside FASD?

FASD is brain damage where due to the wide-ranging effects that prenatal alcohol exposure can have on it, it is not unusual for individuals with FASD to have comorbid conditions. FASD is associated with 428 known conditions [3] which can affect many body systems, including the central nervous system, vision, hearing, cardiac, circulation, digestion, musculoskeletal and respiratory systems.

Remember FASD is a spectrum so what one person sees another may not.

Those who have FASD can have a typical IQ or may have a learning disability; it is a spectrum of need.

“86% of children and young people with FASD have ADHD” Source: National Library of Medicine

“One study found that as many as 72% of children with FASD have Autism”

Source: Mukherjee RAS, Layton M, Yacoub E, Turk J. Autism and autistic traits in people exposed to heavy prenatal alcohol

We know alcohol can have characteristic impacts on development that persist after birth and throughout life. These may include pervasive and long-standing central nervous system dysfunction in the following areas:

motor skills

neuroanatomy or neurophysiology

cognition

language

academic achievement

memory

attention

executive function, including impulse control and hyperactivity

affect regulation

adaptive behaviours, social skills or social communication

It may also include: structural deficits and/or birth defects involving ears, eyes, palmar creases, digits, elbow, joints and heart. Children with FASD are also at increased risk of additional structural defects including congenital heart defects and orofacial clefts.

FASD is a frequently misunderstood condition, those who are not appropriately trained or knowledgeable can often make inaccurate assumptions due to the fact that many individuals with FASD can superficially present as more able than they actually are, due to their spiky cognitive and neurodevelopmental profiles.

There is also often the assumption that symptoms of FASD will improve over time, or a child will outgrow their emotion regulation challenges or poor adaptive functioning for example, when unfortunately the opposite is true; the developmental gap continues to widen and diverge away from the norm over the course of childhood. This necessitates increased, rather than decreased, need for support and services. FASD must be understood as an enduring brain injury, similar to any other acquired brain injury.

How can we support children & young people who have likely and diagnosed FASD?

Every child with FASD is unique, with their own set of strengths and challenges. As such, there is not one set of approaches to support every child with FASD. However, we can think about encouraging and celebrating the individual strengths and needs of each child to consider what would be most helpful.

Not all the strategies mentioned in the links below will be helpful for every child or young person with FASD; it is a good idea to pick a couple of strategies to try and then review whether these have been helpful after some time, within a school environment as part of a 'assess-plan-do-review' process. If strategies have not been helpful, you might need to adjust these or try something new.

Many parents tell us "it is juggle to find something that works, it works for a while and then they try something different.... it is a different kind of parenting"

"The marathon wins can be everything, we hold on to these magical moment to ride the sea of challenges"

For more scaffolding resources please follow the links:

PRIMARY FRAMEWORK TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD

SECONDARY FRAMEWORK: TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD

EDUCATIONAL SUPPORT FOR FASD

FASD STRATEGIES as recommended by Dr Cassie Jackson ASW conference 2021

Children that have experienced trauma may mask their behaviour in School where they are described by parents as ‘exploding’ when they get home, it is important to support the significant sensory needs of children in School who will have experienced Adverse Childhood Experiences and those who also have FASD and or comorbid conditions. Good reference to trauma responses through masking can be found at Beacon House:

https://beaconhouse.org.uk/wp-content/uploads/2020/02/Chameleon.pdf

Executive Functioning

FASD can impact all areas that would fall under what is termed ‘executive functioning’ - Executive Functioning refers to a set of mental processes which are responsible for purposeful, goal-directed behaviour. Executive abilities are highly relevant for daily life activities, socially appropriate behaviour, and academic functioning.

It is important for professionals to recognise that a Children & Young People may have a ‘normal’ IQ, but if they have executive functioning difficulties, they will have difficulty functioning at that IQ level without accommodations in place.

For young children (under 6), differences in executive functioning skills may well not be apparent, as all children are developing these skills. However, as children grow older and executive functioning skills develop, the deficit in Children & Young People with FASD is likely to become increasingly apparent. Over time executive functioning skills will develop in Children & Young People with FASD, but this will not be to the same level as neurotypical individuals without Executive Functioning difficulties.

Impact of Diagnosis for Infants and Young Children

While more challenging, it is very possible to accurately diagnose infants and young children with FASD.

Several common characteristics of FASD in infants include:

difficult temperament
problems with irritability
crying, some parents describe a high pitch cry
sleeping and eating
poor state regulation
blunted pain responses,[7]
poor visual acuity
general developmental
communication delays [8]

While a “wait and see” approach may sometimes be prudent in other neurodiverse conditions, it is important to diagnose FASD as early as possible to get in early scaffolding for support.

In early years, early and ongoing screening to identify potential areas of neurodevelopmental delay or differences will assist parents, caregivers, and professionals supporting the child to promote optimal development and prevent secondary disabilities.[9]

"I might appear to be very articulate but have problems understanding what you had just told me, as well as keeping track of what I was asked to do to correct my behaviour."

"I might be dreadful at keeping appointments and generally organising my life, including poor money concepts and an inability to either plan or follow through on other’s plans for me."

"I might be very impulsive without thinking of the consequences; and, even if corrected, I may do it again because I have great difficulty learning from experience."

"I might appear truculent and challenging and act inappropriately for my age."

"I might be anxious and developing mental health issues because I am being bullied or misunderstood so often."

"I might have real skills and talents I am unable to demonstrate consistently because my life is so disorganised and stressful."

"I might drink alcohol, take drugs, and engage in other risky behaviours (including sexual ones) because I have a very hard time controlling my impulses."

"My sleep pattern will have been poor from an early age."

(Hayes, Moritz and Reid, 2020)

Please download the helpful 'What is FASD' summary produced by the FASD Hub & FASD Alliance member HERE

This very useful quick read, that can also be given to School, may help you unpick what you might be seeing present HERE

Making sense of which parts of the brain do what, find this short paper listing the structures of the brain that relate to 'Cognitive and Behavioural Problems Resulting from Fetal Alcohol Exposure to Sensitive Brain Regions' HERE

Source:

FASD NICE Quality Standards 204: https://www.nice.org.uk/guidance/qs204/chapter/About-this-quality-standard

SIGN 156, Children and young people exposed prenatally to alcohol & FASD Health Needs Assessment: https://www.sign.ac.uk/media/1092/sign156.pdf

References:

[1] Svetlana Popova, Shannon Lange, Kevin Shield, Alanna Mihic, Albert E Chudley, Raja A S Mukherjee, Dennis Bekmuradov, Jürgen Rehm. Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. The Lancet, 2016; DOI: 10.1016/S0140-6736(15)01345-8

[2] FASD Health Needs Assessment: https://www.gov.uk/government/publications/fetal-alcohol-spectrum-disorder-health-needs-assessment/fetal-alcohol-spectrum-disorder-health-needs-assessment

[3] Svetlana Popova, Shannon Lange, Kevin Shield, Alanna Mihic, Albert E Chudley, Raja A S Mukherjee, Dennis Bekmuradov, Jürgen Rehm. Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. The Lancet, 2016; DOI: 10.1016/S0140-6736(15)01345-8

[4] Lancet Glob Health. 2017 Mar;5(3):e290-e299. doi: 10.1016/S2214-109X(17)30021-9. Epub 2017 Jan 13. Erratum in: Lancet Glob Health. 2017 Mar;5(3):e276. PMID: 28089487.

[5] Popova S, Lange S, Probst C, Gmel G, Rehm J. Estimation of national, regional, and global prevalence of alcohol use during pregnancy and fetal alcohol syndrome: a systematic review and meta-analysis.

[6] https://www.gov.uk/government/publications/fetal-alcohol-spectrum-disorder-health-needs-assessment/fetal-alcohol-spectrum-disorder-health-needs-assessment

[7] Oberlander, T.F., et al., Prenatal alcohol exposure alters biobehavioral reactivity to pain in newborns. Alcohol Clin.Exp.Res., 2010. 34(4): p. 681-692

[8] Sirvinskiene, G., et al., Infant difficult behaviors in the context of perinatal biomedical conditions and early child environment. BMC.Pediatr., 2012. 12: p. 44

[9] Olson, H.C., et al., Responding to the challenge of early intervention for fetal alcohol spectrum disorders. Infants &

Young Children, 2007. 20: p. 172-189.