If you suspect your child has FASD (Fetal Alcohol Spectrum Disorder) but has not yet been diagnosed, it is best to get advice and support early.
Children with FASD can be vastly different from each other. In very young children, it can be hard to detect the early signs unless the child has very obvious physical indicators and one or more reported developmental delays. Some of these issues might not be noticed, they might not present a problem until they start school and need to concentrate, learn, follow the rules and fit in around others. They may be diagnosed as something else that does not fully explain brain differences.
It is important to consider having your child assessed for FASD if:
- there is a known history of prenatal alcohol exposure during the pregnancy, and:
- there are concerns for your child’s learning, behaviour, social or emotional functioning.
FASD is diagnosed in New Zealand using the Canadian diagnostic guidelines. FASD is now the diagnostic term. Other terms such as Fetal Alcohol Syndrome (FAS), partial FASD, Alcohol Related Neurodevelopmental Disorder and Fetal Alcohol Effects are no longer used. Only 5% of individuals show facial features, which occur if exposure is early in pregnancy when the face is forming. These are small eye lengths, a thin upper lip and a flat philtrum (groove running from nose to upper lip). Individuals without these facial features are no less affected by the deleterious effects of alcohol on their brain development.
An FASD diagnosis can be made where there is a history of confirmed alcohol exposure during pregnancy and the child has significant impairments in three or more different areas of brain function. These are evaluated by neuropsychological testing and a ruling out of other causes for the difficulties found, including genetic disorders. Other neurological conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. Other conditions such as Attention Deficit Hyperactivity Disorder and mental disorders can co-occur and need to be diagnosed and treated. Other post-natal factors such as deprivation and trauma are considered in the diagnostic formulation. These disadvantages can be alleviated through good care while FASD remains lifelong and requires ongoing management.
The ten brain domains assessed for an FASD diagnosis are cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking) and scholastic function. Each domain is assessed with direct testing using standardised tests. An impairment in a domain is assigned when the individual scores below the 3rd percentile for their age (i.e., below 97% of their same-age peers). Qualitative data such as direct observations and reports of others such as family and teachers is collected in support of diagnosis, as well as a thorough developmental history to consider other factors. The other two domains assessed are neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile mood). The thresholds for each domain to be assigned as impaired are clearly defined in the FASD guidelines and the assessor needs to be suitably trained to use them.
An FASD assessment needs a clinical team specifically trained in diagnosing FASD, typically a multi-disciplinary team, including a paediatrician, psychologist, and ideally with speech and occupational therapist. Not all District Health Boards across New Zealand have assessment teams able to provide FASD assessments. If you are unable to get a full assessment, request a neuro-developmental assessment by a paediatrician to determine whether there is a neuro-developmental condition which may inform your support that may be consistent with helpful FASD approaches.
Assessors will need credible information about pre-natal alcohol and substance exposure. It is important that such information is gathered and used in a way that does not stigmatise the mother. Alcohol use is a societally promoted activity. As such it is not uncommon for unplanned pregnancies to be exposed to alcohol. Not every prenatally exposed child will have FASD. Each situation is unique and needs to be dealt with as such.
Assessors will also benefit from having information regarding the child’s early developmental history including scholastic reports and/or previous medical reports. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment including a battery of neuro-cognitive assessment is completed. This may mean waiting until the child is older than 7 years of age when executive function is mature enough to assess.
The Value of Diagnosis
Many parents wonder about the value of getting a diagnosis. While many people are averse to ‘labels,’ understanding the cause of the difficulties can be transformational for families. It allows families, caregivers, and others to understand the child’s behaviour and needs better and to know how to respond supportively and appropriately.
When a diagnosis is made a report is provided to explain the findings and describe the areas of strength and impairments so family, caregivers and others working with the child know what to do to nurture the child’s strengths and more effectively accommodate their difficulties. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and current situation of the child.
Learning about their own brain diversity can help the child to understand their strengths and needs and work together with their caregivers and teachers. Ideally a diagnosis should be hand-in-hand with providing FASD-informed support. It can be helpful to have this support extend to engaging with the child’s school and classroom teachers, alongside the caregiver.
A diagnosis of intellectual disability as part of the FASD, will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide disability support services.
Many people with FASD will also have other physical conditions as a result of pre-natal alcohol exposure. It's good to be aware of this possibility and arrange access to medical assessment and support as needed.
We would like to acknowledge Dr Valerie McGinn for her advice and input into this section.