NOFAS Uk

Foetal Alcohol Spectrum Disorder (FASD) by Beth Harrison

Shropshire Disability Network has seen an increasing number of parents contacting them in relation to Foetal Alcohol Spectrum Disorder which sadly seems to be escalating.

What is Foetal Alcohol Spectrum Disorder (FASD)?

Foetal Alcohol Spectrum Disorder (FASD) is a term used to describe impacts on the brain and body of children exposed to significant amounts of alcohol during pregnancy.  FASD is a lifelong disability caused by brain damage and can affect: cognition, learning, physical health, behaviour and social ability.  

FASD includes the following:

  • Foetal Alcohol Syndrome, FAS
  • Partial Foetal Alcohol Syndrome, PFAS
  • Alcohol Related Neuro-developmental Disorder, ARND
  • Alcohol Related Birth Defects, ARBD

The Research

Research suggests that at least 7,000 babies are born every year in the UK with FASD.  These numbers are higher than the combined number of children born in each year with Down’s syndrome, cerebral palsy, cystic fibrosis and spina bifida. Moreover, over 70% of children with FASD have been fostered, adopted or in some way involved in the care system.  

Often children are arriving with new families without a diagnosis of FASD. FASD is notorious for going undiagnosed, or being misdiagnosed, for example as autism or ADHD, or attachment disorders and this can lead to misunderstandings about the care and support they require. FASD is frequently termed an ‘invisible disability’ because to someone who does not know the child, they may not appear to have additional needs based on outward appearance.

How does it affect children?

These children can experience numerous challenges to include, but not limited to:

  • Behavioural issues to include issues with attention, concentration and hyperactivity
  • Have a tendency towards untruths
  • Can become fixated and obsessional about things
  • Struggle to plan, organise and follow instructions
  • Inability to learn from mistakes
  • Academic issues (particularly with maths)
  • Memory issues (particularly short term)
  • Difficulties in social situations, socially immature, inappropriate and lack of social awareness
  • Visual, hearing and sensory impairments
  • Difficulties regulating emotions
  • Physically – growth restriction and facial features

Preventing FASD

It is hoped that most birth mothers do not intentionally set out to harm their unborn child. Many women who drink alcohol during pregnancy, and excessively so, may not have understand the consequences of doing so or, may not have indeed known they were pregnant at the time of doing so.

However, in a society where drinking alcohol is on the rise and the NHS struggles to deal with alcohol related illnesses, the recommendation now from the UK Chief Medical Officer is that no alcohol be consumed in pregnancy and when planning a pregnancy. FASD is only preventable when there has been no prenatal alcohol exposure.

The Future

As a parent of a child with FASD you are going to have your ups and downs, periods of worry, difficulty and undoubtedly exhaustion. So firstly, make sure you get support for yourself and remember the importance of taking a break occasionally. However, the most important thing to remember is that your child will have skills, strengths and talents. They may not develop these at the same rate as their peers, but they can and will achieve.

Many children with FASD are creative, particularly with art and music. Their vivid imaginations and love for fantasy can make them great story-tellers! They are often very caring, loving and friendly children who embrace affection.  They tend to be good with children who are younger than them. They are often good with animals, showing specific skills in this area. They can also be very athletic and good practically with things such as woodwork and car mechanics.

Support

The lasting thing to remember is that you are not alone. There are many other parents in the same position as you are.

There are local support groups that you can use, some of which are accessible on social media such as Facebook and Twitter.

There is also the National Organisation for Foetal Alcohol Syndrome UK (NOFAS-UK) which is a registered Charity. It provides information on FASD, links families where possible, runs family activity days, conferences and training sessions, has a library of resources and publishes a regular newsletter. The NOFAS-UK website which is a great starting point for information, support and signposting.  www.nofas-uk.org

The FASD UK Alliance is a coalition of groups and individuals across the UK who are united together for positive social change for those affected by FASD. Their website https://fasd-uk.net can point you toward support groups – including the FASD UK Facebook Support Group which provides daily support and insight.

You can also access the UK-EU Birth Mothers Network on www.eurobmsn.org

The Samaritans are also always at the end of the phone – 116 123.

Two books that you may also find useful are:

  1. ‘Foetal Alcohol Spectrum Disorders: Parenting a Child with an Invisible Disability’ by Mary Mather and Julia Brown (2014)
  1. ‘Understanding Foetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals (JKP Essentials)’ by Maria Catterick and Liam Curran (2014).

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