Foetal Alcohol Spectrum Disorder (FASD): An Insight Into the Cause, Diagnosis, and Interventions
We spoke to Vanessa Hornal, a registered clinical psychologist who works at reThink in Dunedin about foetal alcohol spectrum disorder (FASD).
Kia ora Vanessa. Can you start by introducing yourself? Tell us about your work at reThink.
Tēnā koe. I’m Vanessa Hornal, a registered clinical psychologist, who works at reThink in Dunedin. At reThink I work alongside other clinical psychologists, occupational therapists, speech-language therapists and a social worker to support tamariki and their whānau. My work is a mix of individual and family psychological assessment and intervention for all sorts of things including big emotions, challenging behaviours, developmental concerns, social communication and family support. I see lots of children for assessments for things like ADHD and autism spectrum disorder, for cognitive and educational assessments, and I am part of the reThink Children’s Therapy foetal alcohol spectrum disorder (FASD) diagnostic team. I love working with young people around anxiety concerns, and I really enjoy supporting parents to be the best they can and to bring out the best in their children. I feel very privileged that people share their difficulties with me and love being able to help out.
It is advised to not drink any alcohol while pregnant. How much alcohol causes foetal alcohol spectrum disorder?
There is no known safe level of alcohol use during pregnancy. Foetal development week-by-week is well known and therefore the impact on the developing baby from alcohol exposure can be different depending on when the baby is exposed, at what level the exposure is, and for how long.
Not drinking at all during pregnancy is best for baby. If you are planning a pregnancy, not drinking alcohol while trying to conceive is recommended. We do know though that in New Zealand we have high rates of non-planned pregnancies, so if you do find yourself pregnant and have been drinking alcohol, stopping straight away is the best thing that you can do. If you are finding that hard, seek support from your midwife or GP.
Foetal alcohol spectrum disorder is an umbrella term that refers to a range of birth defects and disorders. Can you briefly explain the different diagnoses that fall on this spectrum?
Foetal alcohol spectrum disorder is a diagnostic term used in New Zealand that describes neurodevelopmental problems after prenatal alcohol exposure. We can identify FASD with and without facial features or identify several neurodevelopment problems that don’t meet the full FASD diagnosis. As the assessment looks at ten brain domains, as well as general growth and development, there is a wide range of different diagnoses (e.g., ADHD, intellectual disability, disruptive mood dysregulation disorder) that may be part of the FASD diagnosis.
What is the process for diagnosing foetal alcohol spectrum disorder?
An FASD diagnostic assessment is undertaken by a team of clinicians including a paediatrician and clinical psychologist, and ideally also a speech-language therapist and an occupational therapist. Social workers are also often part of the team to support the whānau develop management plans.
For FASD to be diagnosed, there needs to be evidence of prenatal alcohol exposure, and severe impairment in three or more brain domains. Once evidence of prenatal alcohol exposure is confirmed, the brain domains can be assessed – this includes areas such as cognition (IQ), memory, attention, daily functioning, and communication. There is a lot of talk about facial features in FASD – while this is always assessed, it is present in less than 10% of individuals with FASD and is used as an additional description, rather than being essential for the diagnosis.
Information for an FASD diagnostic assessment is obtained directly by completing formal assessments and observations with the person, by having caregivers/teachers complete questionnaires, and by medical review with a paediatrician. It is a big assessment, and once all the information is obtained the team then reviews this, considers other possibilities, and only then makes a diagnosis if appropriate.
Why is having a diagnosis valuable for parents and their children?
A diagnosis is valuable for parents and for their children as it gives a framework and understanding of the strengths and difficulties the child may be experiencing that can then be shared with those in the child’s life. It means that appropriate support can be put in place for the tamariki and the whānau. For some families, it means that they will be able to access disability services. A lot of the challenge for whānau with children who have FASD is that they can be viewed as ‘naughty’ particularly as FASD is often an invisible disability. The phrase “can’t not won’t” is super helpful for reframing our thinking when some of the more challenging behaviours are present in children (and adults!) and this is valuable for everyone working with someone who is identified as having FASD.
Foetal alcohol spectrum disorder can present as learning and behavioural problems. What are some examples of how these difficulties may show in a child?
Learning problems in FASD can be as broad as an intellectual disability, where learning anything and understanding the ways of the world can be tricky and or as specific as difficulty with spelling. Behavioural problems can be a great example of the “can’t not won’t” where due to hyperactivity the child can’t sit and concentrate, or because of difficulties recognising and regulating their emotional state they may explode in anger and throw chairs around the dining table. If you think of the brain as being damaged, it helps you to bring a more supportive view to the situation which helps everyone involved.
As a child psychologist, what strategies do you use to address these challenges? What does intervention look like?
As mentioned above, the reframing to “can’t not won’t” is a key message for adults who are supporting tamariki with an FASD diagnosis. Working alongside parents, teachers, and others in the community to first understand the diagnosis and the profile of strengths and difficulties to enable the young person to optimise their functioning is a big part of this.
Intervention differs depending on the areas of difficulties the young person has – for example, if there are academic difficulties, we would be looking to ensure the school has everything set up to enable success, whereas if mood/anxiety difficulties are present we would develop a plan to address this. We work alongside whānau to prioritise what areas they would find most helpful to have support with. A lot of the intervention or support focuses on the parents, the environment, and strategies to successfully manage the young person, rather than individual counselling.
Is there a cure for FASD?
There is no cure for foetal alcohol spectrum disorder, it is a lifelong disability. Although some people think ‘that’s it then’ with this permanency, as with so many other difficulties people live with, the challenges that a person with FASD has can be successfully supported and managed throughout their lives. Keeping up with changes in the presentation of the challenges and identifying new or developing strengths is important to ensure that the management plan remains appropriate for the developing child.
How do you assist parents and families caring for children with FASD?
I think that supporting the parents is a big part of the plan. The stress of managing a young person with FASD can be exhausting. Getting respite care in place to enable the parents to have a break is often a focus. Parents have often advocated for their child for years across health and education and having the diagnosis can be life-changing for them as finally everything fits together and doors for support can open.
I like to have parent support sessions as part of a management plan – this enables me to check on how they are going, to problem solve any developing problems, to allow a place to ‘vent’, and to celebrate the successes that they and their child have had. Well known statements such as ‘putting your own oxygen mask on first’ and ‘not being able to pour from an empty cup’ are frequently mentioned when I am with parents! Self-care is vital.
What can life look like for an adult living with FASD?
It is possible that an adult with FASD can live as a well-functioning, contributing member of our society! Unfortunately, it is also possible that their life may not have taken this course, and they, or others, may be suffering because of some of their actions. We do know that there are many people in prison who have, or likely have, FASD.
Given the best support and a good understanding of themselves, many people with FASD can successfully manage themselves relatively independently. Those that are not able to do this, should be supported by relevant disability services to ensure a good quality of life and involvement in our communities.
The individual profile and differences in challenges, differences in identification of problems and support in relation to their disability, differences in their development, and differences in lifestyle choices all contribute to how an adult with FASD may be living their life.