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I recently attended a conference about FAS/FASD and thought it might be useful to share my notes from it. :)

Hope you find it helpful :)

Please note that the information contained in this post was written by me and was my interpretation of the conference. For official guidance on these conditions please refer to the organisation mentioned at the end of this post. :)

Foetal Alcohol Syndrome/Foetal Alcohol Spectrum Disorder

Notes from TACT conference

Key Note Speakers:

Dr Maggie Watts - FASD coordinator for Scotland
Professor Edward Riley - International FASD Neurodevelopmental Brain Expert

Definitions

FAS: Foetal Alcohol Syndrome


A child may be given the diagnosis of FAS if they have the facial features associated with it, has some of the medical/behavioural aspects and a known history of alcohol being consumed while Birth Mother was pregnant.

FASD: Foetal Alcohol Spectrum Disorder.

Sometimes referred to as Foetal Alcohol Effects. FASD is not a diagnosis, but is an umbrella term for a number of conditions that could be a associated with maternal alcohol use. These children do not have the facial features of FAS. They are described as "non-dismorphic" children. FASD is known as a "hidden disability".

Background

Incidence of FAS in UK is not known (figures are not collected) but it is thought that internationally 1/1000 babies are born with FAS and 1-2/100 children are born with FASD. It is the leading cause of learning difficulties in the western world.

The severity of each child's circumstances can be dependent on the day/days that their mother drank and the amount consumed - the facial features of FAS can be pinpointed to a specific day in pregnancy. Although much of the damage to the central nervous system occurs in the first 12 weeks of pregnancy, the brain can be affected at anytime in the 9 months of pregnancy.

Brain Development

At birth, babies have over 100 billion brain cells that have developed at a rate of 250,000 per minute for 9 months. In months 3-9 of pregnancy (and for 2 years after birth), these brain cells migrate to the appropriate part of the brain. They differentiate into cells with specific purposes.

If alcohol is a factor, it can affect all aspects of brain development. Cells may not divide properly, they may not move to the right place and instead become clumped together, they may not connect to other cells. Basically "alcohol can do whatever it likes to the developing brain" (Sterling Clarron)

Alcohol affects every stage of brain development. There is no safe amount, or no safe time to consume alcohol while pregnant.

Children with FAS/FASD often have Mircophely - a very small head circumference in relation to their other measurements on a centile chart. This is because their brain is smaller.

Certain areas of the brain tend to be more affected than others. The areas of the brain relating to the following tend to be the most affected:

Executive Functioning (organising, prioritising, impulsiveness, self awareness, initiating/ending activities and problem solving
Motor function
Spontaneity
Memory
Interpreting feedback from environment
Risk Taking
Non-compliance with rules
Associated learning
Social and sexual behaviour
Judgment
Language

The Corpus Callosum is a structure that transmits information from the left to right side of the brain and vice versa. In children affected by alcohol, this structure can be smaller, in the wrong place or almost non-existent. This would lead to children having difficulty carrying out activities that involve co-ordinating the 2 side of their body, for example playing a musical instrument or juggling.

The Physical Effects of FAS/FASD

Generally speaking, in any test or activity children with FAS will perform at a lower level than those with FASD. Those with FASD perform at a lower level than those in a control group.

The facial features of FAS are one of the main areas that may lead to a diagnosis. Children with FAS may have any number of the following features:

Short Palpebral Fissure (small looking eyes)
Indistinct Philtrum (the groove between top lip and nose)
Thin upper lip
Epicanthal folds (a fold of skin just below the eye)
Low nasal bridge
Minor ear anomalies
Microphely (small head)

There are many other medical conditions/characteristics associated with FAS/FASD:

Poor fine motor skills
Poor muscle tone
Heart murmurs
Eye problems
Feeding/sucking/swallowing difficulties
Hearing problems

The Behavioural Affects of FAS/FASD

There are many bahavioural indicators of FAS/FASD, however these are often mistaken for other issues such as poor parenting or other medical conditions:

Hyperactivity
Inattention
Implusivity
Expressive language deficits
Receptive Language deficits
Poor social understanding
Poor imagination
Poor planning
Cognitive flexibility problems
Working memory deficits
Obsessionality
Tics
No sense of danger

The problems in diagnosing FAS/FASD

Diagnosing FAS can only happen after certain criteria have been reached. There must be a history of maternal alcohol use in pregnancy, the facial features are present and the child displays behaviours/conditions associated with the condition. Children with FAS are considered disabled.

FASD is a "hidden disability" meaning that there aren't necessarily any physical indicators that can solely be said to be caused by maternal alcohol use in pregnancy. Children are regularly given diagnoses of cerebral palsy, autism, ADHD, Attachment Disorder and many other conditions. Professionals can be undereducated on the area, and children often receive differing diagnoses from different specialists.

Children with FAS/FASD can have a normal IQ, but still find it very difficult to complete certain kinds of task. This means that they often don't reach the threshold for receiving additional help in school or certain benefits though they are required.

The Long term prognosis

FAS/FASD are not curable. The brain damage is permanent and many children face life long difficulties. Some never reach Independence. Others, with the right support, do succeed.

As adults or young people, those with FAS/FASD are far more likely to suffer from mental health issues and alcohol/drug abuse. They may struggle to maintain relationships, and not be capable of holding down a job. They may be too trusting of others, which can leave them vulnerable.

How we can help children with FAS/FASD

We need to be aware of the prevalence of these conditions in our community. Incidences of FAS/FASD are far higher than we realised and many children go undiagnosed or wrongly diagnosed.

It is very easy of education, health and social care staff to observe a child as being lazy, unmotivated, uncooperative, resistant, non-compliant and willful and assume they have ADHD or poor parenting.

It helps to "reframe the problem" - look at the behaviours in a different way.

Won't …....... Can't

Lazy and does not Try …..... Tired from trying
(FAS/FASD children require more brain energy to complete simple tasks)

Forgets everything …...... Can't remember
(FAS/FASD children can learn something and have forgotten it an hour later)

Steals …... Does not understand ownership

Does not get the obvious ….. Does not learn from experience

Children with FAS/FASD need to be kept close to their care giver. Often they have no sense of danger and learning road safety can be an impossible task.

It may be helpful to change the child's environment. Overstimulating classrooms may cause the child to feel stressed or become hyperactive.

Structure and routine are absolutely vital in working with these children.

Increased supervision will also be necessary.

Children may need an "external brain" - someone else who thinks things through such as finding a safe place to cross the road.

Children may need instructions to be clearer. If you tell a child "before you go out, put on your shoes" they may hear "go out and put on your shoes" as they struggle with words associated with sequencing.

Other sources of information/support

http://hsc.uwe.ac.uk/fas-info/

http://www.fasaware.co.uk/education_docs/daily_guide_for_living.pdf

http://www.nofas-uk.org/

http://www.fasdtrust.co.uk/

http://www.tactcare.org.uk/pages/en/foetally_affected_childrens_services.html

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites
 

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That was really interesting Boggy.  Thanks for taking the trouble to write it all up.

Amazing that the classic facial features can be tracked to a specific day of alcohol intake during preganacy  :eek:  I didn't realise that FASD was so common, '1 - 2 in every 100'  :eek:

x
 

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yes scary stuff - up to 10 times more common. And when you think of all the children in care the stats are even more frightening!

Bx
 

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Well done Boggy, really well written and interesting to read.

OT x
 

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Thanks for this Boggy - it is very useful
Gertie xox
 

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Thankyou Boggy for taking the time to post such an informative piece  ;)  Very interesting reading and mighty helpful - Well done  :)
 
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