Getting an FASD diagnosis

Why is diagnosis important?

The best interventions and management of the symptoms of FASD starts early, and they are dependent on correct diagnosis. But there are further reasons that we encourage it if possible:

  • For tamariki and whānau – diagnosis can be helpful to understand that difficulties are brain-based, and not the result of ‘bad parenting’ or naughtiness. It’s necessary for positive interventions and support, to get access to support services, mitigate secondary challenges and have generally better outcomes long-term. It can also contribute to better understanding of the risks of alcohol in pregnancy and help break the intergenerational cycle of FASD.

  • For schools and communities – diagnosis  is helpful in gaining an understanding of how FASD impacts a child’s learning.  More specifically it means educators can design and implement appropriate educational interventions which can contribute to lifelong positive outcomes; in communities it raises awareness around alcohol in pregnancy and the need for understanding and support for neurodiversity.

There is more information on why diagnosis is important on the Australia FASDHub website, including videos with whānau and individuals. Click here to read and watch.

Avoiding stigma

Getting a diagnosis of Fetal Alcohol Spectrum Disorder can be made easier if prenatal alcohol exposure is already confirmed. This is why it's essential to avoid stigma for mothers – if they feel unsafe around telling assessors there was alcohol involved in their pregnancy, they may be less inclined to let them know, potentially resulting in an incorrect diagnosis. 

At FASD-CAN we believe no mother intentionally harms her child and we know that reasons for alcohol exposure can include addiction (this alone can be very complex) and unplanned pregnancy – around 50% of pregnancies in Aotearoa are unplanned. This can mean the mother has been drinking alcohol but is unaware she is pregnant.

We are committed to non-judgemental support and compassion.

The process

There are ten brain domains which must be individually assessed to diagnose FASD. These include cognition (IQ), adaptive function (daily living skills), language, motor skills, attention, memory, executive function (reasoning and consequential thinking), scholastic function, neuroanatomy/neurophysiology (such as small head circumference or unexplained seizures) and emotion regulation (anxiety or depressive disorders, including labile or changeable mood).

Please note, there is much more information about the the process of diagnosis on our 'Understanding FASD' page, here.  

In the first instance, if you know or suspect your tamariki has had prenatal alcohol exposure, it can be a good idea to go to your doctor for advice or for a referral to a community paediatrician.  Be aware, however, that many caregivers have reported having to educate their GP about FASD so seeking a referral may be the better option. 

Pathways to a diagnosis

• Privately

This is often the route caregivers or whānau go down, IF they have the resources, but it can be prohibitively expensive and there may be long waitlists. There are a some diagnostic and assessment services around the country and we are currently engaged in a large-scale research project to 'map' services around the motu with the Universities of Auckland and Otago. Please do contact us for further specific help if you would like to. 

• Oranga Tamariki / Permanent Caregiver Support Services (PCSS)

If your child is being fostered by you, and they are under OT care or your child is eligible for PCSS support then they may pay for diagnosis.

• Ministry of Education

The other avenue is through the MoE (your learning support coordinator / SENCO / RTLB should know more about this) which may apply if you and the school are facing severe behavioural issues – this route is also often funded.

• Youth Justice

Sadly, if a young person with FASD does end up in trouble with the law (see our advice around this here), the courts may send them for funded diagnosis. However early intervention will always have the best outcomes. 

Support from others who have been there

It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.

It can be helpful to talk to other parents who have been through the process in your area. To contact others, you could find a kanohi ki te kanohi (face to face) support group in your area – click here for our list of groups around Aotearoa.  We are also developing online support group meetings – signing up for updates or following us on Facebook will ensure you stay updated.

If there is not a group near you, you can also try our Facebook support groups:

FASD-CAN NZ Professionals & Parents Group | Facebook

FASD-CAN NZ Parent and Carer Support Group | Facebook

You could also direct your rangatahi with FASD (16 and over) to our new 'Individuals' page.

FASD-CAN Individuals Group | Facebook