Often parents and professionals wonder about the value of getting a diagnosis and may be averse to a child being 'labelled' – but knowing the cause of their challenges can be transformational for both 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 the assessment is completed, a report is written to explain the findings and describe the tamaiti's areas of strength and challenges. Best practice dictates that the report is written in simple and clear language and shared with caregivers, whānau and professionals, particularly educators. This enables everyone to be aware of where support and scaffolding is required.
The explanation to the child could be guided by the clinician, but it is ultimately up to the whānau as to how, when and what is communicated to the tamaiti – this will depend on the developmental level of the child and current situation of the whānau.
A diagnosis of Intellectual Disability (ID) – an IQ of less than 70, as part of the overall FASD diagnosis will enable a referral to a Needs Assessment Service Co-ordination organisation (NASC), which may be able to provide Disability Support Services (DSS) funding. Currently, people with FASD without an ID are ineligible for DSS funding.
Note that many people with FASD will also have other physical challenges and comorbidities as a result of prenatal alcohol exposure – for example, it's estimated that over 80% of those with FASD have co-occurring ADHD.
• Here are two videos about the value of diagnosis which many have found valuable:
– one with Reinier deSmit entitled My adult FASD diagnosis. Nothing changed. And everything changed.
– one with Myles Himmelreich entitled Diagnosis: the start of a better understanding of FASD.
• Click here to read a 2024 study from Edinburgh into the views of young people with FASD who were asked about how they felt about getting a diagnosis.
