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If you suspect your child has FASD (Fetal Alcohol Spectrum Disorder) but has not yet been diagnosed, it's 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:
In June 2023, FASD-CAN commissioned a survey of FASD diagnostic services available across the motu. Please see further information, including an interactive map of diagnosis services in Aotearoa, on our Caregiver and Whānau Support page under 'Getting a Diagnosis'.
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 around 5% of individuals show the 'sentinel facial features' which can be associated with FASD, but these can only occur if alcohol is consumed early in pregnancy (days 19-21) when the face is forming. The presence of these facial features does not reflect the degree of brain and body damage that can occur and facial features does not imply a more severe form of FASD or greater impairment.
The vast majority of people with FASD do not have outward physical sign of having FASD, making it truly a 'hidden' disability.
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 standardised testing of ten neurodevelopmental domains (sometimes referred to as brain domains) and ruling out other causes for the difficulties found, including genetic disorders.
Other conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. Conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and mental disorders often 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 scaffolding and support.
The ten brain domains (click for our downloadable info-sheet) 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 academic 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.
Best practice for an FASD assessment requires a multi-disciplinary team, including a paediatrician, neuropsychologist, and ideally a speech therapist and occupational therapist. Few 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 or a qualified neuropsychologist who is trained in diagnosing FASD.
Assessors will need credible information about pre-natal alcohol exposure. It is important that such information is sensitively 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 early childhood and school reports and/or previous medical records. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment is completed. This may mean waiting until the child is older than seven years of age when executive function is mature enough to assess.
Many parents wonder about the value of getting a diagnosis and averse to their child being 'labelled' – but understanding the cause of their challenges can be transformational for the person with FASD and their whānau. It allows parents, caregivers, and others to understand the child’s behaviour and needs better, and to know how to respond supportively and appropriately. For the person with FASD it can be liberating to find out that their difficulties are brain-based and are not their fault; it helps them make sense of what has happened in their life.
When a diagnosis is made, a report is provided to explain the findings and describe the areas of strength and challenges so caregivers, whānau and others working with the child are aware where the support and scaffolding is required. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and their current situation.
A diagnosis of intellectual disability as part of 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.
WATCH: Here are two videos about the value of diagnosis which many have found valuable: one with Reinier deSmit and one with Myles Himmelreich, both adults with FASD.
FASD-CAN would like to acknowledge Dr Valerie McGinn for her advice and input into this section.
