Ireland has highest level of binge drinking in the EU. A binge is considered to be any time an individual consumes more than four drinks in a single evening. In Ireland for many young women of child bearing age this would be just the beginning of a good night out. Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank during pregnancy. These effects may include physical, mental, behavioural, and/or learning disabilities, with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.
Streissguth, Barr and Sampson (1990) in the US, found that 52% of women used some alcohol during pregnancy, and 13% had a pattern involving five or more drinks per occasion (associated with their children showing significantly lower functioning in mathematics and literacy in the primary years). Mothers may not be ‘alcoholics’ in the stereotypic sense, but usually have abused alcohol during at least part of the pregnancy (Streissguth et al.1990). Fetal Alcohol Syndrome (FAS) is now recognised by the World Health Organization as the leading known cause of learning disabilities, FAS is diagnosed in about 1 in 600-700 live births, FAE (Fetal Alcohol Effects) in about I in 300-350 in the US. In Ireland it would be estimated that up to at least 650–1000 children a year could be affected who, for medical or social reasons, have not been diagnosed. Thus the number of children affected by alcohol is surely high, but they are not yet being identified and therefore are not receiving appropriate educational supports.
Why do we not hear about FASD? Some may feel that a diagnosis of a disorder (related to maternal consumption of alcohol) can result in guilt and blame. It is a challenging task for a diagnostician to tell a client that their child has an FASD, just as it is difficult for parents to acknowledge the impact of alcohol consumed during pregnancy. Families often experience guilt and/or blame, and this often prevents others from hearing about FASD.
FASD masquerades as ‘other disabilities’
Some of the behavioural manifestations of FASD have resulted in children with FASD being called ‘masqueraders’ (O’Malley 2005). For example, children with FASD have been diagnosed as having Attention Deficit Hyperactivity Disorder (ADHD), or Autistic Spectrum Disorder, or Asperger Syndrome, or Unspecified Syndrome. Misdiagnosis may be occurring because of the absence of proper screening methods. *(O’Malley, April 29th Lecture at NISLD, TCD, 2005,) I am a psychologist and I have contact with many schools, parents, and teachers who routinely ask, ‘Why is it that so many more children seem to be having attention and behavioural difficulties, learning disabilities, or multiple disabilities?’ Certainly there are many contributing factors to this question, but one of the leading contributors is still being underestimated or not addressed. So how can the Department of Education and Children plan to put resources in place for a problem that is not identified? While the Department has very clear categories of special educational need for children to receive supports, currently they do not recognise FAS and FAE as distinct handicapping conditions or as a separate category of educational need. These students are typically categorised as having mild, moderate or severe learning disabilities, or as suffering from an emotional or behavioral disability, or Assessed Syndrome. Generic categories do little to define individual needs—FAS and FAE have not yet been recognised by the Department as a category.
Functional skills (i.e. adaptive behaviour) of persons with FAS and FAE often are severely compromised in relation to both chronological age and intellectual ability. Teachers describe the problems as impulsivity, poor attention and difficulty making transitions. As students age, their impulsivity becomes restlessness and a tendency to ‘split’ when situations become too difficult.
Parents and teachers note such problems as stealing, lying and inappropriate social interactions. The greatest problem often is a marked discrepancy between seemingly high verbal skills and an inability to communicate effectively. The combination of poor self-control and inadequate communication skills create social problems. Many students employ and interpret speech quite literally. These children frequently lack the skills to make logical decisions; they must be taught how to make reasonable choices and given many opportunities to practise. Their difficulties may appear to be deliberate misconduct or attention seeking, while actually being neurologically based problems with memory or comprehension. These students experience difficulty with organisational skills, abstract and conceptional thinking, regardless of intelligence or age. They also have difficulty internalising and generalising rules. This becomes more difficult when every setting the child is in (home/school/community) has different rules. Due to problems of short-term memory and information processing, the child with an FASD cannot remember or apply various rules in specific situations, thus repeating the same mistakes over and over.
In Ireland there is not yet a specific diagnostic team in place and children typically may see various consultants individually over a period of time and all information may not be shared. Ideally a diagnostic team should include geneticist, developmental paediatrician, neurologist, dysmorphologist (a physician specialising in birth defects), educational consultants, psychologists, psychiatrists and social workers, occupational therapists and behaviour specialists. This team would complete a comprehensive developmental profile including prenatal history, parental social history and tests to include height, weight, vision, hearing, cardiogram, etc., evaluation of the face, and an IQ test. Occupational therapy, speech, neurological and psychiatric evaluations are used to check for:
- Cognitive deficits, such as memory problems, or developmental delay
- Executive functioning deficits, such as problems following multistep directions
- Motor delays or deficits, such as clumsiness or tremors
- Attention deficits and hyperactivity
- Poor social skills, such as interrupting others and misreading cues
- Behaviour problems, such as aggression or not finishing tasks
- Speech and language specialists.
Three years ago I contributed to an article in this magazine on this topic (Frontline 53 2003). It was one of first in Ireland. Since then progress has been made: articles have appeared in national papers, the topic has been presented to PSI, namhi, Trinity College Dublin, NUIG doctoral psychology students and recently on RTÉ’s Prime Time programme. Changes are happening, but too slowly for the children affected. In closing I will ask all of you who are reading this to join together to be pioneers to make changes.
Collectively we CAN make a difference in the outcome of the many lives that have been altered by no fault of their own.
If WE don’t make a difference, what difference does it make?
If you’re pregnant, don’t drink. If you drink, don’t get pregnant.