Living with Foetal Alcohol Spectrum Disorder

Reading time: 6 min

Children and adolescents with Foetal Alcohol Spectrum Disorder (FASD) have difficulties complying with the norms, rules and regulations of society. This inability is not due to voluntary behaviour, but is instead caused by impaired brain connectivity resulting from prenatal exposure to alcohol.

When a child or adolescent with FASD is unable to remember and/or perform a simple task, it is due to a brain injury, in this case one that affects short-term memory. 

People with this disorder do not develop in accordance with their chronological age. This is known as ‘dysmaturity’, or the inability to achieve maturity in some specific areas, even when it is achieved in others. They tend to underperform compared to expectations for their chronological age, which causes difficulties in their ability to interact with and participate in the social situations around them. They may demonstrate a lack of social competence, a lack of impulse control and poor concentration. These behaviours pose a long-term risk that translates into academic failure and problems with social and occupational adjustment in adult life. 

It may be difficult for them to achieve autonomy in their day-to-day lives, and they may develop severe secondary difficulties (mental disorders). 

It should be remembered that there is currently no therapeutic intervention that allows the effects of prenatal alcohol exposure to be reversed. The brains of people with FASD are permanently damaged, and expectations around the outcome of interventions should be modified. 

 

Person who hesitates when making a decision

Decision-making. The process of making decisions is very complicated for children with FASD. The decisions they have to make on a daily basis can pose a problem that interferes with their everyday life. Because their brains process information in a different way, these children may have difficulty understanding the consequences of their actions. In most cases, they will need extensive external support to improve in this area.

Difficulty in having friends

Friendships. Social relationships can be very difficult for children and adolescents with FASD. 
People with FASD often have poorer social skills than expected for their age group. They need to focus all their energy in order to cope with everyday tasks, which leaves them with fewer resources available to concentrate on social aspects. For example, they may not know how to take turns when speaking, or they may find it difficult to respect the physical space of others. This may lead to them experiencing situations of exclusion in social groups, which makes them feel very lonely and frustrated. It also puts them at a disadvantage compared to others, which can lead to bullying.  
 

Person who has difficulty controlling impulses

Impulse control. People with FASD find it difficult to control their behaviour in certain situations due to deficits in their brain function. The people around children and adolescents with FASD need to remember that they do not act this way to be defiant, nor do they do it intentionally. Instead, they are trying their best to feel equal to other people their age. If inappropriate behaviours are observed, the following should be assessed: the physical environment (any changes in temperature, lighting, decoration, smell, etc.); basic personal needs (hunger, thirst, tiredness, etc.); the social context (feeling lonely or overstimulated by others, feeling under pressure, etc.). Adults need to understand that the brain connectivity of these children has been altered, and this means everything becomes more complicated in certain situations and/or on certain days.

Person who has difficulty managing money

Managing money. This topic can be very frustrating for adolescents with FASD. The concept of money and value is very difficult to understand without the necessary skills. For them, a pair of shoes may seem to have the same value as a chocolate bar. Money is an abstract concept, which means that while money is real and we can touch it, the value it has forms part of a broader idea. Adolescents with FASD often act impulsively. This means that when they want something, they don’t consider past mistakes or understand that their actions may affect their future. It is important to be patient and repeatedly explain to them the correct way to manage money.

Person who has difficulty knowing the difference between fantasy and reality

The difference between fantasy and reality. Children already see the world differently to adults, but children with FASD have difficulty understanding the difference between fantasy and reality. They may lie continuously, but it is not done intentionally. They have difficulties with short-term memory and sometimes fill in the gaps with other information they remember. They may try to please the person they are talking to by saying things they think they want to hear, or they may have trouble thinking in a logical way. Due to the way their brains work, they may eventually start to believe their own fantasies.

A brain with different senses

Sensory adaptation. Many children with FASD are very sensitive to touch, movement, lighting and/or sound. Because of the way their brains work, they may be very focused on what they feel, see or perceive, instead of directing their attention towards other things. When they are hypersensitive to stimuli they may need to disconnect, or they may engage in inappropriate behaviour in an attempt to stop whatever it is that is bothering them. These behaviours can be very difficult for the family to cope with, especially when they occur in public. It is important to remember that their senses are not well regulated. Sometimes it may be difficult for them to know when they are hot or cold, or they may have trouble feeling pain. The support of an occupational therapist is essential in the case of children with sensory difficulties. 
 
 

Sense of ownership or belonging

Sense of ownership/property. Children and adolescents with FASD have difficulties understanding what the concepts of ownership and property mean. There are several reasons for this. Firstly, they tend to ‘live in the moment’ and, therefore, when they see something they want and it is available, they simply take it. Secondly, difficulties with short-term memory mean they do not remember whether they have taken it or if someone has given it to them. 

They may lie, either because they don't really remember that they have taken the item, or because they are afraid of getting into trouble. People with FASD may not remember past mistakes, and therefore do not remember other occasions where they have ‘stolen’ with resulting negative consequences. 

It is difficult to know what to do when a person with FASD steals something. Personal judgement must be used in each situation to assess what the cause was. They must also be repeatedly taught what stealing means. 
 

Person who has difficulty adapting to change

Changes. Life is full of changes. Adults handle the changes in children and adolescents’ lives. 
Moving house, starting school, changing class and teacher, or changes to family life are all common situations. For people with FASD, it can be very difficult to accept change. As well as these major changes, they also have difficulty coping with small changes in their daily routines, for example stopping playtime to go and eat. 
 

Person who has difficulty participating in activities

Participating in activities. Most children are interested in participating in extracurricular activities with other children. For some children and adolescents with FASD, the skills that these activities require, such as the ability to work in a team, follow instructions, develop skills quickly and compete, cause them more stress than enjoyment.

Calendar and clock

Structure. Children with FASD may experience a lot of stress if they do not have a very structured life. When people structure their daily lives, they do so in an order that makes sense to them. A person with FASD needs structure to help them orientate themselves in everyday life. The use of reminders helps to give structure. They can be used as a sort of ‘external brain’. Visual timetables, timers and diaries can also be used.

Hygiene routine; soap and toothbrush

Routine. Routine is important for everyone. Understanding that we do the same things at the same times allows us to keep organised. Children and adolescents with FASD have trouble organising themselves. The family can help them create routines and learn appropriate habits. Although a person with FASD may not understand why they need to brush their teeth every day, it is important that they develop a solid hygiene routine.

Routines in visual format (pictures, bullet points) are very useful. Routines broken down into sequences with all the steps to be followed facilitate autonomy. 
 

Substantiated information by:

Marta Astals Vizcaíno
Oscar García Algar

Published: 25 August 2021
Updated: 10 September 2021

The donations that can be done through this webpage are exclusively for the benefit of Hospital Clínic of Barcelona through Fundació Clínic per a la Recerca Biomèdica and not for BBVA Foundation, entity that collaborates with the project of PortalClínic.

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