It is not necessary for a diagnosis to be made before certain strategies, interventions and accommodations can be put into place. If it is believed by the family that the child has FASD implementing FASD-friendly accommodations will not hurt a child who doesnt have FASD but will make a difference to a child who does. Many people wait for a diagosis before implementing interventions. It is critical to implement FASD-friendly interventions as soon as possible. Im not suggesting that diagnosis is not necessary – it is critical, however its also critical to reduce the possibility of secondary disabilities.
The term Fetal Alcohol Syndrome (FAS) is only one aspect of a spectrum of disorders caused by prenatal exposure to alcohol. The whole spectrum is contained under the term Fetal Alcohol Spectrum Disorders or FASD. Including FAS, there are three conditions comprising the spectrum of disorders:
Fetal Alcohol Syndrome (FAS) – the diagnosis of FAS is based on three features.
- Pre- and post-natal growth deficiency
- A distinct pattern of cranio-facial malformations, and
- Brain and central nervous system (CNS) dysfunction.
Partial Fetal Alcohol Syndrome (pFAS) – this is an unclear term that has been used in many different ways – more commonly it has been used to indicate that an individual has some, but not all, of the characteristic features of FAS.
Alcohol Related Neurodevelopmental Disorder (ARND) – Other commonly used terms are Fetal Alcohol Effects, Alcohol Related Birth Defects, and Neurodevelopmental Disorder – Alcohol Exposed.
ARND is by far the most common and also the most invisible. It is this condition more than any other which the rffada believes is likely to result in secondary disabilities primarily because it is invisible. People with FASD usually also have good verbal ability. They can speak well, answer questions and explain their dreams. This often appears to indicate competence and a normal IQ (75% of people prenatally exposed to alcohol will have a normal IQ), people around the individual such as teachers, parents, family and friends all have expectations of the individual which he or she may not be able to fulfil. In this event, his or her mental health begins to be compromised. Behaviour seems to be within the control of the student but it is often a case of ‘cannot’ rather than ‘will not’
The full syndrome (FAS) is usually identified through the typical facial anomalies and because they are relatively recognisable receive support although this is definitely not a given anywhere in Australia. Even in Western Australia where there seems to be more activity with regard to FASD than elsewhere in Australia, parents and carers on the rffada FaceBook parents and carers group have been waiting for years to access diagnostic services.
The other conditions (pFAS and ARND) are more problematic because, as stated earlier, the individual may have average intelligence, will not have the demonstrable facial features of full FAS, and will almost certainly not have been diagnosed, so friends, family and other significant people in their lives will not fully understand the reasons for their behaviours. They may believe it’s because of environment, circumstance, abuse, mental illness, genetics, drugs and alcohol, or just immaturity. In FAS, the pattern of facial anomalies because of maternal drinking can include:
- small eye openings
- flat midface
- flat philtrum
- thin upper lip
- low birth weight
Central Nervous System abnormalities, of at least one of the following:
- decreased head size
- structural abnormalities of the brain
- neurological problems (such as impaired motor skills, poor coordination, hearing loss, visual problems)
Including behavioural and/or cognitive problems such as:
- Intellectual disability
- Learning difficulties
- Poor impulse control
- Problems with attention
- Problems with memory
- Problems with social perception
- Problems reasoning and using judgement
- Cognitive processing deficits
- Slow auditory pace
- Developmental lags
- Deficits in maths and language
- Inability to predict outcomes
Alcohol is a behavioural teratogen. A teratogen is a substance that causes birth defects and a behavioural teratogen is a substance that also causes behavioural problems. Although alcohol exposure obviously presents a physical risk to the fetus, it is in the area of behaviour that alcohol seems to do the most long-term damage.
People with FASD may have trouble setting personal boundaries and observing other people’s boundaries. They often have emotional problems, can be impulsive, may not be able to sustain relationships, and often cannot anticipate consequences. They have difficulty paying attention, have poor organisational skills and have trouble completing tasks.
FASD is permanent, irreversible brain damage and the brain injury is the primary disability, however secondary disabilities may occur when the primary disability is not recognised and appropriate strategies and interventions put into place. Although the primary disabling conditions of fetal alcohol exposure last a lifetime, its secondary disabilities can be prevented.
From life history interviews of 415 individuals with FASD using 450 questions, Dr Streissguth from the University of Washington found that:
- 94% of people diagnosed with FASD experienced mental health problems – which was the most prevalent secondary disability
- 43% of people of school age experienced disrupted school experience (suspension, expulsion or drop out)
- 42% of people and 60% aged 12 and over had been in trouble with the law (involvement with authorities, charged or convicted of crime)
- 60% had been confined (inpatient treatment for mental health, alcohol/drug problems, or incarceration for crime)
- 45% aged 12 and over were reported to have exhibited Inappropriate Sexual Behaviour
- 30% of people over the age of 12 experienced Alcohol and Drug Problems
- Problems with Employment were indicated in 80% of adults with FASD
- Problems Parenting: Of the 100 females of childbearing age, 30 had given birth; 40% drank during pregnancy, more than half no longer had the child in their care – of their children, 30% have been diagnosed with, or were suspected of having, FASD
If it is not possible to halt the secondary disabilities through appropriate interventions, strategies and environmental modifications, then it is vital that they be understood so that relevant management strategies can be developed and implemented.
Dr Streissguth’s research found that secondary disabilities may be prevented if the following occurs however even with a high level of support and the following, the secondary disabilities may still occur:
- Early diagnosis is a universal protective indicator for all secondary disabilities – only 11% of individuals with FASD were diagnosed by age 6
- Eligibility for services from disability agencies (including Disability Support Pension, Disability Employment Agencies and assessments from appropriate allied health professionals) is another strong protective factor – most individuals with FASD need these services, yet most do not qualify
- Living in a stable home with nurturing parents and minimum of changes in the household
- Protection from violence, from witnessing or being victimised by violence
The brain injury results is an information processing deficit, an inability to reason in the way that others do, and an alarming inability to fit in with the rules and behaviours required by society because of the damage to the corpus callosum. Most often, affected individuals are seen as lazy, unmotivated, disorganised, in denial, or dishonest.
|Highly verbal||Bright in some areas||Artistic||Athletic||Friendly, outgoing|
|Willing and helpful||Generous||Good with younger children||Wants to please|
Preventable secondary characteristics
In the absence of identification, people with FASD often experience chronic frustration. Over time, patterns of defensive behaviours commonly develop, but these characteristics are believed to be preventable with appropriate supports:
|Fatigue||Tantrums||Irritability||Frustration||Anger and agression|
|Fear, anxiety||Avoidance, withdrawal||Shut down||Lying||Running away|
|Trouble at home||Trouble at school||Mental health problems||Legal trouble||Drug or alcohol abuse|
|Problems in the community|
rffada FASD Identification Tool
This is an informal non-medical identification tool for FASD based on the experience of parents and carers of children with FASD and the research into the condition conducted by rffada members since 2000. There is a difference between medical information and personal medical advice. The material in this form offers information only. For professional medical advice, take this document to your doctor and discuss. Only your doctor can give you medical advice based on yours and your child’s medical history.
- Do you remember if you consumed alcohol while you were pregnant with this child?
- If yes, can you remember how much alcohol you consumed (standard drinks)?
- How often, on average?
- How many, on average?
- Was your doctor, paediatrician or nurse concerned about your infant’s failure to thrive?
- Does your child have behavioural problems?
- Does your child have sensory issues, i.e. does he find certain textures unpleasant or does he react strongly when touched or tickles – or as an example, does he not like being sprayed with water in a water-bomb or a water-pistol ‘fight’?
- Do you find that he prefers to play with younger children?
- Does he have a low IQ?
- Alternatively, does he appear to have a good IQ but report cards do not reflect his apparent ability?
- Does he have memory or attention problems?
- Does he make ‘poor’ decisions which seem to be in contrast to those most other people would make?
- Does he have a learning disability?
- Do you find that he gets up in the middle of the night to roam around the house?
- Does he find mathematics particularly difficult?
- Does he have hearing or vision problems?
- Does he seem to deliberately defy the house rules?
- Do you have trouble getting him to participate in household tasks?
- Are there signs of mental illness, i.e. depression, anxiety, etc.?
- Has he been in trouble, suspended or expelled from school?
- Do you find that friends never seem to last?
- Has he been in trouble with the police or security people from the local shopping centre?
- Do you have trouble getting him to go to school or has truancy been a problem?
If there are more ‘yes’ than ‘no’ responses and there is a ‘yes’ to the first question ‘Do you remember if you consumed alcohol while you were pregnant with this child?’ and “Does your child have behavioural problems?”, you should speak to a doctor about FASD. You may need to go to several medical professionals before you will find someone who can help you.