Round table full of books about FASD

Resources

Information for GPs

Foetal Alcohol Spectrum Disorder (FASD) is an umbrella term for a range of effects that can occur to an individual who was exposed to alcohol in utero.

This Toolkit has been designed primarily for General Practitioners but it also contains advice for pregnant women and families and carers of children and adults affected by FASD.

The information and videos in this Toolkit help increase understanding of FASD, the effects of alcohol on the foetus, the process of diagnosis for FASD as well as support and strategies for a person caring for a child or adult who may be affected.

There is no cure but education can help prevent more children from being born with lifelong alcohol related brain damage and disabilities.

Information for GPs about FASD, the signs and symptoms and the best advice to give to your patients about FASD.

What is Foetal Alcohol Spectrum Disorder (FASD)?

Foetal Alcohol Spectrum Disorder (FASD) is caused by alcohol consumption during pregnancy. The term FASD describes a spectrum of structural, behavioural and neurocognitive impairments which can vary immensely between individuals.

It is a spectrum of lifelong conditions that are entirely preventable if a woman abstains from alcohol throughout her pregnancy.

FASD is an umbrella term that covers:

  • Foetal Alcohol Syndrome (FAS)
  • Alcohol Related Neurodevelopmental Disorder (ARND)
  • Alcohol Related Birth Defects (ARBD)
  • Foetal Alcohol Effects (FAE)
  • Partial FAS (pFAS)

Foetal Alcohol Syndrome is the most clinically recognisable form of FASD and it is characterised by the following anomalies:

  • central nervous system dysfunction
  • facial dysmorphology
  • pre and postnatal growth deficiency

It is often misconstrued that FAS is the worst outcome from prenatal alcohol exposure and that pFAS, FAE, ARBD, ARND are lesser forms of the disability.

Whilst it is true that the other disorders in the spectrum may not have all of the characteristics of FAS, without the recognisable facial and physical features, people can be less likely to receive a diagnosis or support.

The face is formed during the third week of pregnancy and if the mother was not drinking during this period then the child will not have the full FAS facial features. However, this does not mean that the child is unaffected by alcohol related brain damage if the mother drank at any other stage of her pregnancy.

How common is FASD?

There are currently no reliable prevalence figures for FASD in the UK. Statistics are not routinely collected or recorded by the British Paediatric Surveillance Unit but the World Health Organisation state it is estimated that 1 in 100 babies are born each year with FASD worldwide.

We know that the UK has a reputation for high levels of binge drinking so we can only assume that the estimates for this country may be substantially higher.

How alcohol affects the foetus

Alcohol is a well known teratogen which can affect the developing brain of a foetus, impacting all stages of brain development, from the birth of the cells to migration or myelination. It can cause significant changes in brain structures affecting the corpus callosum, the cerebellum, subcortical structures and frontal lobes. It may also have an effect on the viability of connections between brain structures.

There are critical periods for foetal birth defects especially during the first trimester when the organs are developing. However, the brain and central nervous system are vulnerable to the effects of alcohol exposure throughout the ENTIRE pregnancy.

Startle effect of alcohol consumption on the foetus

Studies show that even small amounts of alcohol can influence foetal behaviour. Hepper et al (2004) found that maternal alcohol consumption during pregnancy increases foetal startle behaviour. The results of the study indicate that exposure to alcohol during pregnancy significantly increases the exhibition of spontaneous startles by the foetus.

The characteristics of FASD

The symptoms of FASD can be mild or severe, ranging from reduced intellectual ability and attention deficit disorder, to heart anomalies and even death.

Many children experience serious behavioural and social difficulties that can last a lifetime.

Their emotional age may often be approximately half of their physical age affecting their understanding of the world and how it is presented to them.

There are also a number of possible physical and non-physical effects of FASD that may include:

  • smaller head circumference
  • heart defects
  • limb damage
  • kidney damage
  • damage to the structure of the brain
  • vision anomalies
  • hearing problems
  • specific facial characteristics
  • attention and memory deficits and hyperactivity
  • difficulty with abstract concepts (maths, time, money)
  • poor problem solving skills, difficulty learning from consequences
  • poor judgement, poor impulse control and missing milestones
  • confused social skills.

People with FASD can also find that they have:

  • Difficulty translating information from one sense of modality into appropriate behaviour i.e. translating hearing into doing, thinking into saying, reading into speaking, feelings into words.
  • Difficulty generalising information. Links are not automatically formed. Learning happens in isolated clumps and may be unconnected or only loosely connected to other experiences, thoughts or emotions.
  • Difficulty perceiving similarities and differences. Without the ability to generalise and make associations, a person’s capacity to compare and contrast, see whole patterns, sequence, predict events and make judgements is affected.

Diagnosis of FASD

With no diagnosis, a wrong diagnosis or a partial diagnosis such as attention deficit disorder or autism and other disorders, a child will not receive the specialised support they need.

Though FASD is not a genetic disorder, in the UK it is usually a geneticist who is trained to recognise the physical and facial features and diagnose FAS. They are also able to rule out other similar syndromes it might be. Some paediatricians and psychiatrists are also knowledgeable and are able to diagnose.

Please note that the facial features tend to fade as the child gets older and it can be helpful to submit early photographs of the patient when seeking a diagnosis.

FASD is much harder to detect because of the lack of distinct facial features. The FASD Behaviour Clinic, Surrey and Borders Partnership NHS Trust  www.sabp.nhs.uk is the only specialist clinic in the UK and will see children from age 6 years and above as further tests are required including psychological and behavioural tests.

Benefits of getting an early diagnosis:

  • Some people feel the label of Foetal Alcohol Syndrome/Spectrum Disorder can carry a stigma. The benefits of a diagnosis bring specialised support and services which produce better life outcomes than there might have been without one.
  • A diagnosis will result in better understanding of the child.A diagnosis will facilitate the process in getting the child a Statement.It will benefit the child by understanding their FASD behaviour and reassure parents that it is not their fault nor is it a result of bad parenting.
  • Coping strategies can be put in place.
  • Prevents an educational breakdown.

Without a diagnosis and support

People with FASD are at risk of:

  • Exclusion from school
  • Social exclusion
  • Not being in education, employment or training
  • Inappropriate sexual behaviour and unplanned pregnancies
  • Problems with the law
  • Homelessness
  • Going to prison or institutional confinement for psychiatric and drug treatment
  • Depression, self harm and other mental health problems including suicide

The importance of a Statement or Education, Health & Care plan

A Statement or Education, Health and Care (EHC) plan will support the child throughout their education and into adult services. It will provide additional classroom support and assist entry into special schools if necessary. It will help access special supported college programmes and escorted transport for vulnerable students who are unable to travel independently. It will also show the individual child as needing support which may not be immediately apparent.

Recognising FASD – Pamphlet

A new NICE Quality Standard on FASD is coming in England in July 2020.

CCGs and FASD

A Crisis of Commissioning: CCGs Are Failing Government Policy on FASD

Based on Freedom of Information requests to all Clinical Commissioning Groups and NHS Trusts and Health Boards, this report highlights the mismatch between government policy and actual practice. 

NOFAS-UK GP Survey

The NOFAS-UK GP Survey was conducted by OnePoll between August 22nd and September 1st, 2017.  It polled 150 GPs that work in England.  

Information for GPs

This Toolkit has been designed primarily for General Practitioners but it also contains advice for pregnant women and families and carers of children and adults affected by FASD.

Results of the NOFAS-UK 2017 GP Survey:

Adult and child with FASD wearing superhero costumes

Early diagnosis and intervention from birth and in the first years of life can make significant differences to the developmental progress of the affected child, and better understanding of the condition can help parents and professionals cope more appropriately with the child’s difficulties.”

SIGN (2019), quoting Paley et al.
Woman with FASD smiling

Diagnosis for adults

boy in mask playing with bubbles

Health

2 adults and 2 children smiling within a blow-up picture frame

Relationships

National FASD favicon

This website uses cookies to ensure you get the best experience on our website. By viewing this website you agree to the cookie policy and terms and conditions.