FASD – What is it?
FASD is an umbrella term that covers Foetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), Foetal Alcohol Effects (FAE) and partial Foetal Alcohol Syndrome (pFAS). Its effects range from reduced intellectual ability and Attention Deficit Disorder to heart problems.
FASD is 100 per cent preventable by not consuming alcohol in pregnancy. Nobody knows the true prevalence of FASD. It is thought that in the UK the majority of children with FASD are adopted or fostered.
Some of the issues for people with FASD include difficulties processing information, predicting events, and understanding consequences. They have attention and memory defects. Issues with problem solving skills result in a struggle with abstract concepts – time, maths, money. Social skills, immature behaviour, and poor impulse control are a feature. Sensory issues play a part. Hyperactivity may be apparent.
What life is like in our family
Bubble is 9. She was placed with us at 5, with her sister, Squeak, who was then 3. This year Bubble was diagnosed with Alcohol Related Neurodevelopmental Disorder (ARND). Our reality is far from what we thought family life would be. Some days every single interaction seems tinged with ARND. Like all adoptive parents we’re helping our children deal with developmental trauma and loss. Bubble has disorganised attachment. The ARND is the icing on the cake, and in the cake, and dripping down the sides of the fricking cake. Forget soggy bottoms being the problem, the whole cake is a gloopy amorphous hodge podge of trauma.
In order to help Bubble we have had to make massive changes in the way we live our lives. We have to be consistent, patient, repetitive, have routines. Oh boy, do we have routines! If we deviate from the routines we know it’s not going to be A Good Day. We have adjusted our expectations, and every day we have to really focus on building positives and connections, because the ones we built yesterday have been forgotten by Bubble.
Bubble may understand things one day but may not know them the next. When her anxieties are heightened this may be minute to minute. School is a confusing nightmare for her. Some days Bubble comes out of school super-charged with anxiety. She lies to us about whether she has had a spelling test, she attempts to leave her reading book at school, she does not want us to know anything about what is happening at school. And she can have trauma rages at the mere mention of homework.
Bubble is unpredictable, and can be angry and aggressive, with Squeak, her younger sister, often the target. We have also been kicked, slapped, and had things thrown at us. Bubble does not understand consequences. Telling her that she may hurt Squeak if she pushes her out of the way to get out of the front door first every morning, is just not computed.
Bubble has sensory issues. Some days she is a whirlwind, and can become very easily disregulated. She gets distracted easily. She struggles with some food textures. She can trip over fresh air.
Bubble loses things and forgets things. Some days she cannot remember that she needs to brush her teeth, or wash her face. We have had mornings where she does not appear to recognise us.
Bubble has very low self esteem – her pot of shame is easily topped up and often appears to be overflowing. As Bubble grows, the differences with her peers becomes more marked. Her social behaviours are way below her chronological age. She does not want friends over, and is rarely invited to friends’ houses or parties.
We constantly try to find things Bubble enjoys doing. So far the short list includes sorting and resorting fossils into particular patterns, tennis without the competitive element, and horse riding. We attempt to big up Bubble in these activities. We try to have conversations with her about them after the event, to spark further moments of connection through her enjoyment of them. Sometimes she seems to have forgotten them as soon as they are over.
Obviously in all of this we also have to be very aware of Squeak’s needs. Whilst encouraging their sibling relationship, we know that Squeak can be perturbed by Bubble’s presentation. Bubble is becoming increasingly jealous of Squeak. We ensure that they both have 1:1 time, and particularly at weekends they both have the opportunity for this with @ProseccoSue or me. This seems to help both girls, but it’s a far cry from my previously imagined version of happy family life.
What may the difficulties be later on?
Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs or sustaining healthy relationships. Less than 10% of adults with FASD live independently due to impairments in life and social skills, despite having low average or average intellectual abilities.
In Bubble’s teenage years we will need to talk with her about ‘interdependence’ rather than ‘independence’. We know that when Bubble leaves home she will probably continue to need support with time management, budgeting, organising, shopping and cooking, personal hygiene, social relationships, housing, and finding and maintaining employment. Unless there is a major shift in services’ understanding of FASD, I am extremely sceptical that Bubble will receive any formal support when she is an adult.
Services need to focus on prevention, diagnosis, and support
It is important for the family and the individual to get a diagnosis because research has shown that without a diagnosis the secondary outcomes are very poor: 90% of patients with FASD will develop mental health problems, get into trouble with the law, have sexual difficulties or go on to have their own alcohol and drug problems. If FASD goes unrecognised at an early stage, there is a high risk of these adverse life outcomes.
When Bubble came to us, despite social services knowing her birth mother’s history of alcohol consumption, and despite Bubble’s presentation, there was no dialogue about the possibility of FASD. We asked for help. Repeatedly. But nobody seemed to understand our struggles. On one memorable occasion we listed Bubble’s behaviours to a social work manager. His verdict was that these were ‘typical’ behaviours and that we appeared ‘anxious’!
When a Consultant Geneticist finally made the ARND diagnosis earlier this year, we were told there was no point referring Bubble to the Paediatrician, as in our area they had been refusing such referrals.
At a school meeting, not one of the health, social work or teaching professionals sitting around the table knew what ARND was. Most had heard of FASD, but didn’t appear to understand the implications of such a diagnosis. At a subsequent school meeting as we explained Bubble’s issues, her new teacher asked us ‘why are you telling me this?’
Alongside clear messages to all expectant parents that there is no safe level of alcohol consumption during pregnancy, this is what children with FASD and their families need from health, social work and education professionals:
- An early diagnosis.
- Comprehensive assessments from knowledgeable social workers.
- Honest discussions with potential adopters about the possibility of an FASD diagnosis, and what it may mean.
- Personalised support in schools, and a willingness to embrace other teaching styles.
- When working with adopted teens, a recognition that the ‘immaturity’ they appear to be displaying, may actually indicate undiagnosed FASD.
- Active and non-judgemental listening to parents, whatever the age of their child.
A final word from ‘Understanding FASD’, Maria Catterick & Liam Curran, 2014:
‘It is time to make everything less of a battle and more about equity in terms of rights to public health services so that more children will be protected from alcohol exposure in the womb, and those that are prenatally exposed will be able to achieve the goals that much of society take for granted. ‘