Understanding FASD
What is FASD?
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure. Individuals with FASD can experience complex physical, behavioural, learning and intellectual problems that persist throughout the lifespan. FASD is diverse and individual depending on when alcohol was consumed during brain development.
Research has consistently found the brain to be the organ most sensitive to the effects of prenatal exposure to alcohol, as the brain is developing throughout the entire pregnancy. The wide continuum of impacts includes both physical and cognitive (learning and behavioural) effects. The average IQ for full Fetal Alcohol Syndrome (FAS) is about 70, but more importantly the IQ range for all on the spectrum is from 20 – 130. IQ, however, is not the only measure of brain function and many people suffering from FASD can have an ‘average’ IQ but are seriously affected by deficits in their adaptive and executive functioning. This manifests itself in what are termed Primary Behaviours. Diane Malbin lists these as:
Dysmaturity: socially or developmentally younger than their chronological age
- Slower processing pace
- Impulsivity, distractibility
- Memory problems and inconsistent performance
- Can have strengths in certain areas
- Difficulty generalising, forming links and making associations
- Difficulty abstracting and predicting outcomes
- Over and under sensitivity to stimuli
Secondary Behaviours are those that develop over time, when there is a lack of accommodation in the environment. These are often defensive behaviours and are preventable if interventions are in place. Again, Diane Malbin lists these as:
- Fatigue, frustration
- Anxious, fearful
- Rigid, resistant, argumentative
- Poor self-esteem
- Self-aggrandisement, attempts to look good
- Isolated, few friends, often picked on
- Acts out, aggression
- Interrupted school experience – stand downs, suspensions, expulsion
- Sexual problems
- Truancy, run away and other forms of avoidance.
- Trouble with the law
- Depression, self-destructive, suicidal (most common in adolescents and adults)
Fetal Alcohol Spectrum Disorder and Confabulation
Dr Valerie McGinn PhD
Paediatric Neuropsychologist and FASD Specialist
FASD is brain damage caused by exposure to the teratogen alcohol in utero. It is a lifelong disability that is invisible but nonetheless impacts on capacity to live independently and behave responsibly. Young people with FASD required structure support and supervision and to be assisted at home and school by responsible adults who are well educated in the disability and how to manage those affected differently so as to accommodate their special needs.
Damage to the function of the frontal lobes of the brain means that a person with FASD may confabulate, that is make up things that may not be true. This is not lying as it is a neurological condition due to faulty wiring in the brain. The affected person has trouble basing what they say in reality and checking it against the evidence. When they have forgotten or are confused they may just say anything that suits or they think is expected at the time. They may believe what they say to be true at the time and for this reason can be very convincing. Young people and not so young people with FASD have even confessed to crimes they have not committed so as to be agreeable and they get easily confused when questioned using complex language or leading questions. They are not devious or sophisticated, take things at face value and do not realise the intentions of others, for instance in situations where others may be blaming them for something they have not done. They also lack reserve so can be overly open and honest, disclosing things about themselves that it may be best not to. For this reason they need responsible adult assistance when they run into difficulties.
Young people with FASD want to be liked and they struggle to form and maintain friendships because they miss social cues and can behave in a socially inappropriate way because of their brain damage. They may say thing to try to impress others without realising the implications. They are also often scape-goated by others due to their naive simplicity and are prone to acting under the instructions of more sophisticated peers. They are easily victimised by individual and systems. Immaturity is the primary feature of the disability so they require the expectations of a much younger child. Sadly most do not grow up to be able to live independently and they require lifelong support. The brain damage they suffer is through no fault of their own.
Confabulation is a feature of a brain based deficit of reasoning and therefore when a young person says things that turn out not to be true it is pointless trying to reason with them. It is best not to pick up on it and store it away for further investigation and verification. This does not mean that we should not believe what they say but a grain of salt is required. For the welfare of young people with FASD it is vital to have open communication and good collaboration between school and home so that all are working to best support the young disabled person across their entire day. It is best for one well informed person, usually the SENCO to manage situations that may arise so that solutions can be quickly found and problems averted.
May 2013
Frequently Asked Questions
We have done our best to answer the most frequently asked questions about FASD. Please feel free to contact us if you have any questions that do not appear in this list.
How do you get FASD?
FASD can ONLY be caused by maternal alcohol consumption during pregnancy. Alcohol is a teratogen which means it is a substance that reaches the baby in utero and can change the structure and function of developing organs. The brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy.
How much drinking by the biological mother can cause FASD?
There is no known safe amount of alcohol that can be drunk during pregnancy and there is no known safe time during a pregnancy when alcohol can be drunk. The effect will vary depending on the timing and the quantity of alcohol consumed. FASD is more often associated with binge drinking – 4 or more standard drinks on an occasion – or continuous moderate drinking – 2 or more drinks. However lesser amounts have been found to adversely affect brain development in subtle ways. Not all children exposed to alcohol are affected to the same degree which means genetics also have a role.
Can biological fathers cause FASD?
No. FASD is the result of direct exposure to alcohol’s toxic or ‘teratogenic’ effects on the developing cells of the fetus. However there is some evidence that alcohol consumed before conception by the father or the mother may alter gene expression and set up a predisposing risk factor for some individuals.
Can FASD be cured?
No. FASD causes changes to occur in the underlying cell structures of the organs that affect an individual’s ability to function normally. While some physical birth can be repaired such as heart defects, FASD is a lifelong brain-based disability. With understanding and the right kind of support people affected by FASD can lead fulfilling lives.
What’s different about the way people with FASD may behave?
Every person affected by FASD is unique. Each person will have their own strengths and areas of need, however generally a person with FASD will have a cluster of challenges that affect them in a variety of ways. They will struggle with self-regulation and managing every day activities. At certain times they may become overwhelmed and easily aroused to a state of rage. They will struggle with academic learning. They may be impulsive and have difficulty understanding consequences. They will struggle with relationships and social skills. Some of this behaviour can mimic that of other brain based disabilities and they are frequently misdiagnosed.
How do you know if you have FASD?
A multi-disciplinary diagnostic team is required to make an FASD diagnosis which includes medical and neuropsychological assessment. Four categories are assessed according to a carefully prescribed criteria – growth deficiencies, gestational alcohol exposure, facial characteristics consistent with Fetal Alcohol Syndrome, and psychological domains.
How many people have FASD?
Not all babies exposed to alcohol before birth will have FASD. International statistics suggest that between 1 – 4% of live births each year will be FASD affected. In NZ which has a relatively high binge drinking culture, it is estimated that between 600 – 3000 babies could be born annually with FASD.
Does drinking during breastfeeding cause FASD?
No. FASD is only caused during pregnancy. However alcohol does enter breast milk and can disrupt normal feeding, nutrient intake and baby’s sleep patterns. It is best to express milk beforehand if you are intending to drink alcohol.
How can FASD be prevented?
Currently New Zealand’s binge drinking culture and unplanned pregnancy rate are barriers to FASD being prevented. Rates of FASD will reduce when society stops normalising binge drinking and women are fully informed and supported to make not drinking the easy choice during this time. Supported from friends, partners and families is especially important. If drinking in the early stages of an unplanned pregnancy has occurred, then ceasing drinking immediately will reduce the possibility of FASD. It is wise to seek professional help if stopping drinking at any time during pregnancy becomes difficult.
Where can I go for help?
Your GP or lead maternity carer Referral to a Child Development Services at your local DHB Alcohol and drug services at local DHB The Alcohol and Drug Helpline 0800 787 797 Alcohol Healthwatch – Fetal Alcohol Network NZ www.fan.org.nz 09 5207037 Health Promotion Agency www.hpa.org.nz.
Know FASD – Alcohol in utero knowledge base
This interactive tool shows how FASD may present across a person’s lifespan.
Source: https://knowfasd-webpro.ualberta.ca/female.aspx?index=3
Don’t know, don’t drink
FAQ brochure prepared by the Health Promotion Agency
http://www.alcohol.org.nz/alcohol-its-effects/alcohol-pregnancy/faqs