Fetal alcohol spectrum disorder (FASD) is **a** diagnostic term for a neurodevelopmental disorder caused by exposure to alcohol before birth.

FASD causes harm to millions of children and their families in the developing world, and Aotearoa is no exception.

It is estimated between 1800 and 3000 children are born with FASD every year in this country. But as yet we have no coherent centralised health strategy, no active monitoring of FASD births and no access to disability support services for people with FASD, unless you also have an intellectual disability.

Unfortunately, many people don’t know about FASD. Here are some facts to help you better understand it and to hopefully encourage you to act in support of FASD children and their families.

**Useful facts to know:**

In 2020/21, around[ one in every five New Zealanders](https://www.actionpoint.org.nz/drinking-in-new-zealand) had a hazardous drinking pattern and data collected by the Ministry of Health suggests [only half of all pregnancies were planned](https://www.health.govt.nz/publication/pregnancy-planning-findings-2014-15-new-zealand-health-survey). We need to recognise that the problem of alcohol abuse is a societal one, and not stigmatise birth mothers of children with FASD.

Reactions to exposure to alcohol in the womb vary enormously and [no one can predict a safe level of alcohol for developing fetuses.](https://www.health.govt.nz/your-health/conditions-and-treatments/disabilities/fetal-alcohol-spectrum-disorder-fasd)

The New Zealand Government initiated a three-year FASD action plan in 2016. One significant outcome is that the alcohol industry has until July 2023 to label all alcoholic products with the statement ‘Alcohol can cause lifelong significant harm to your baby’.

The Ministry of Health estimates the annual cost of FASD [to be $450 million ](https://interactives.stuff.co.nz/2022/03/circuit/fetal-alcohol-spectrum-disorder-mismanagement-new-zealand/)with another[ $200 million per year ](https://interactives.stuff.co.nz/2022/03/circuit/fetal-alcohol-spectrum-disorder-mismanagement-new-zealand/)in so-called “lost productivity”.

[Up to a quarter](https://journal.nzma.org.nz/journal-articles/fetal-alcohol-spectrum-disorder-and-prisoners-the-need-for-research-informed-action) of our current prison population of 8000 people are believed to have FASD.

We at Awhi Ngā Mātua support calls to prioritise research into the extent of FASD affected individuals in New Zealand. This would help to provide effective and targeted treatments to families impacted by FASD.

### **More useful facts to know when it comes to our children:**

Sometimes children with FASD cannot grasp ‘consequences’ – this is because of FASD not because they are innately ‘naughty’.

Many children with FASD bear no outward markers of the syndrome, which means frequently no allowances are made for the effects of the syndrome on their behaviour and development.

Children with FASD often have low self-esteem because they are frequently told off and punished for behaviour over which they have no control.

If a child with FASD gets a diagnosis before the age of six they have much improved outcomes in later life.

Children with FASD thrive when treated with understanding and empathy. Improving knowledge of FASD in New Zealand’s education, justice and health sectors would go a great deal toward better understanding and more empathy.

[For more on FASD check out the resources from the **IHC Library,**](https://www.ihc.org.nz/how-we-can-help/library) many of these can be read online. Or contact the IHC library directly to have a chat about what you need on **0800 442 442** or email**: librarian@ihc.org.nz**.


Emily Writes

One child dressed all in red, reaches their hands up to catch a ball, thrown by a child in yellow.

What is FASD?

What is fetal alcohol syndrome? What is FASD? What is Fetal Alcohol Spectrum disorder? What is foetal alcohol syndrome? What is foetal alcohol spectrum disorder?

Foetal alcohol spectrum disorder (FASD) can make mainstream schooling can be challenging.

Foetal alcohol spectrum disorder (FASD) is a diagnostic term for a neurodevelopmental disorder caused by exposure to alcohol before birth.

Dubbed the invisible disorder, FASD is not widely understood in the New Zealand education sector, or even amongst the general public.

FASD causes significant damage to a child’s brain that can affect their ability to learn, regulate their behaviour and understand consequences. Yet often, without an official diagnosis, children are presumed to be the same as their neurotypical peers and are punished for behaviours that are beyond their control.

Even when you do have an official diagnosis of FASD, teachers are not always up-to-speed with appropriate learning strategies and support that will allow children to thrive and develop to the best of their abilities.

It falls to parents, therefore, to be their child’s FASD advocate from the moment they set foot in school, or from when they receive a diagnosis.

In Aotearoa, [an excellent website ](http://www.fasd-can.org.nz )has been set up to support parents of children with FASD. [FASD-CAN (Care Action Network)](http://www.fasd-can.org.nz ) has a lot of resources on how to navigate your child’s schooling journey.

[Hey Teacher](https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjTtezZwMH-AhXLTGwGHTF-DJQQFnoECAkQAQ&url=http%3A%2F%2Fahw.org.nz%2FPortals%2F5%2FResources%2FFannz%20documents%2FHey%20Teacher.pdf&usg=AOvVaw30N6FgIYUpA6uejLmHvIRQ) - An A4 downloadable pdf providing FASD facts, tips and strategies for your child’s teacher.

_[Think Ahead – How to Advocate for your Child at School](https://assets.nationbuilder.com/fasdcan/pages/232/attachments/original/1646359266/Thinking_Ahead_-_Learn_How_to_Advocate_for_Your_Child_at_School.pdf?1646359266)_, also downloadable.

_[About your child](https://www.fasd-can.org.nz/about_your_child_printable_sheet_for_teachers)_[ ](https://www.fasd-can.org.nz/about_your_child_printable_sheet_for_teachers)– printable sheet for teachers.

These resources are a great starting point, but it will probably pay to be the squeaky wheel that gets your child’s needs met. Make sure there is an ongoing dialogue with your child’s teachers, teacher aides and SENCO teacher.

### **Here are some key concepts that you, as parents, can reinforce:**

- My child struggles to learn from consequences. This means that punishments such as the removal of privileges and reprimands will not change their behaviour.
- Teaching strategies that work for neurotypical children will not work for my child. My child will need an individual education plan with my input on their strengths, challenges and interests.
- Learning for a child with FASD is inconsistent – what my child knows one day, they will not know the next. This is not deliberate, it is simply beyond their control and caused by damage to their brain.
- Please don’t label my child as wilful, defiant, or naughty. Going to school every day is a challenge for them and they are doing their best in an environment that often makes them anxious and frightened.
- Children with FASD sometimes have a ‘cloak of competence’, this means they appear to have a higher level of comprehension than they possess, particularly with language.
- Teachers need to readjust their expectations of what my child can learn. My child will learn best with repetition, structure, fun and kindness.
- Visual reinforcements often work well with children with FASD, along with games, puzzles and technology. Especially when they key into my child’s special interests.
- My child is easily overwhelmed. It will help if you break up study time with physical activity. Also allow them to go to a designated space to de-stress.
- Children with FASD can struggle to understand abstract concepts. Use simple concrete language, and when giving instructions, only give one instruction at a time.

Sometimes, despite your best efforts, your child will come to grief within the schooling system and will face the possibility of being ‘stood down’ or excluded from school. Once again, FASD-CAN has excellent advice on this topic, and provides guidance on how [you can challenge a school’s decision to exclude your child.](https://www.fasd-can.org.nz/school_exclusion)

It may also be that your child’s current school is no longer suitable to meet their learning needs. You may choose to homeschool them or place them in a different school. **But children with disabilities should _never_ have to go through the punitive experience of being excluded.**

We all have a role in promoting empathy and understanding for the disorder as much as it is in our power to do. The more honest and open you are about the condition with everyone who is in your child’s life, the more support they are likely to receive.

As one FASD researcher reminds us, we should never lose sight of the ‘courage, fortitude and optimism required from such a child (with FASD) each morning as they get ready for school. They know the day will be confusing, that their experience of it will include gaps and sensory overload . . . that they will be told off for things beyond their control . . .And yet they get themselves ready to the best of their ability and set out to live another day in their bewildering, overwhelming and often frightening reality’ (C. Carel:2016).

For more on FASD, see our other panui on **Awhi Nga Matua**. You might also like to check out the resources below which include useful websites, online interactive games, and [books and articles from the **IHC Library**](https://www.ihc.org.nz/how-we-can-help/library)**,** many of which can be read online. Or contact the IHC library directly to have a chat about what you need on **0800 442 442** **or email: librarian@ihc.org.nz**.



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How do I help my FASD child at school?

FASD, fetal alcohol spectrum disorder, fetal alcohol syndrome, FAS, foetal alcohol syndrome, school and FASD, education and fetal alcohol syndrome 

FASD, fetal alcohol spectrum disorder, fetal alcohol syndrome, FASD, foetal alcohol syndrome, Understanding Fetal Alcohol Syndrome, Coping with FASD, FASD awareness, Support organisations FASD, FASD support Australia

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What is FASD?

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