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Fetal Alcohol Spectrum Disorder Disability Snapshot SGP KP Publishing

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

Table of Contents

1 Peak body consulted …………………………………………………………………………………………….. 4

2 What is Fetal Alcohol Spectrum Disorder? …………………………………………………………….. 5

3 How is Fetal Alcohol Spectrum Disorder diagnosed? …………………………………………….. 6

4 Language and terminology ……………………………………………………………………………………. 7

5 Enabling social and economic participation …………………………………………………………… 8

6 Families and carers ……………………………………………………………………………………………….. 9

7 How can I tailor a meeting to suit a participant with Fetal Alcohol Spectrum Disorder? …………………………………………………………………………………………………………………… 10

8 What people with Fetal Alcohol Spectrum Disorder want you to remember …………… 11

9 Helpful links ………………………………………………………………………………………………………… 12

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

This Disability Snapshot provides general information about Fetal Alcohol Spectrum Disorder (FASD) to assist you in communicating effectively and supporting the participant in developing their goals. Each person is an individual and will have their own needs, preferences and experiences. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

                                                            Peak body consulted – 3
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1 Peak body consulted

In developing this resource, we consulted with:

Developmental Disability WA
Dr Amanda Wilkins, a Developmental Paediatrician experienced in diagnosing FASD and who was involved in establishing FASD C.A.R.E Inc
Dr Robyn Williams, a Nyoongar woman who completed her PhD on FASD in the south west region of Western Australia

National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) Australia.

                                                          Peak body consulted – 4
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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

2 What is Fetal Alcohol Spectrum Disorder?

Fetal Alcohol Spectrum Disorder (FASD) is a term that describes the impacts on the brain and body of a person exposed to alcohol during pregnancy. It is a lifelong disability and people with FASD will experience challenges in their daily living. Each person with FASD is unique and will experience their own strengths and challenges.

To reach their potential they may need support with:

motor skills
physical health
learning
memory
attention
communication
emotional regulation
social skills.

Some children with FASD may have shorter than average height, low body weight and a small head size. They may also appear hyperactive and have poor coordination.

It is common for people with FASD to be able to express themselves but may have difficulty understanding, processing and retaining information.

                                          What is Fetal Alcohol Spectrum Disorder? – 5
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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

3 How is Fetal Alcohol Spectrum Disorder diagnosed?

FASD is usually diagnosed by a multi-disciplinary team which may include paediatricians, psychologists, speech/language pathologists or occupational therapists. When assessing for FASD, a clinician will consider:

the person’s history and presenting concerns from an obstetric, developmental, medical, mental health, behavioural, and social point of view
any diverse features such as unusually shaped or sized head or facial features and other major/minor features present at birth
whether the child may have been exposed to alcohol during and after pregnancy
any known medical conditions including genetic syndromes and other disorders
the growth of the person.

Only 1 in 10 children with FASD will have identifiable facial features. Children with FASD will still have significant developmental impairments even if they do not have physically identifiable features.

An early diagnosis may lead to better outcomes for a child living with FASD. If a child receives early intervention and support, they may be less likely to develop other behaviours and issues in adulthood and the ongoing impact of the condition may be less severe.

                              How is Fetal Alcohol Spectrum Disorder diagnosed? – 6
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4 Language and terminology

You should use strengths based language when talking about a person with FASD.

Instead of	Please Use
Suffering with…	Person/Individual living with…
Afflicted or affected by	Impacted by
FASD is caused by maternal alcohol use	FASD is caused when a developing baby is exposed to alcohol
Alcoholic/addict	Women who use alcohol or drugs

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

Therapy and support services can be beneficial to enable social and economic participation for people with FASD. Supports will vary depending on the age and circumstances of the participant. Children under 7 years with FASD will be supported by the Early Childhood Early Intervention approach. Some young children may present with global developmental delay, before they have a formal diagnosis of FASD.

Common therapy supports include speech therapy and occupational therapy. People with FASD may also benefit with support from counsellors who are experienced in working with the disorder.

They may support people with FASD with:

developing and improving communication, comprehension, and literacy skills
learning social skills to develop and maintain friendships at school and in the community, and protect against isolation
improving their memory and ability to process information
capacity building in concepts such as planning, time, money and problem solving
participation in programs to support self-regulation, emotional regulation and calming responses such as the “Zones of Regulation” program
sensory processing skills
daily living skills such as dressing, tying shoelaces, and writing
education support and instruction for maths and other subjects

developing social, educational and emotional maturity.

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

6 Families and carers

Families can provide different levels of support to a person with FASD. They assist with daily living tasks and encourage the participant to find a job. Family members may have a good understanding of the support the person needs to participate in the community and work towards independence.

While families are usually happy to provide support, it can impact their own employment, the needs of other family members, and their own needs and health – especially as they age. It is important to consider, for children and adults, whether the level of informal support being provided is sustainable and how it may impact the family.

Biological mothers of children with FASD may experience guilt or concern that they will be blamed for the disorder. It is important not to make assumptions about how or why an individual was exposed to alcohol during pregnancy. Many mothers of children with FASD do not have problematic patterns of alcohol use, may have been unaware of the early pregnancy and are not neglectful parents. They may feel frustration at the attitudes of health care providers toward them. This can affect their confidence in their ability to parent a child who already faces many challenges.

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7 How can I tailor a meeting to suit a participant with Fetal Alcohol Spectrum Disorder?

Every person with FASD is unique and has their own individual personality, strengths and areas where they need support. It is important to remember that each person will have different needs.

You can tailor a meeting to suit the participant by:

giving the person time to think about their answer and respond – some people will need more time than others
asking questions to make sure the person understands you – don’t assume the person’s response means they have understood
communicating in short, simple sentences and using Plain English
keeping the number of people in a meeting to a minimum as the participant may be overwhelmed with too many people
having shorter meetings, with follow ups if necessary, to get relevant information across
reducing distractions such as visual distraction, background noise and artificial lighting if possible
giving the person information about what will be discussed at the meeting ahead of time to give them an opportunity to consider responses and prepare with a support person
communicating and engaging directly with the person with FASD, not just their family member, carer or another person who attends the meeting with them
speaking respectfully in an age appropriate way
visual information can be helpful to explain some concepts and messages, such as pictures or objects like a clock or calendar
using Easy English written information to help with discussion

writing the discussion points in simple dot point format and include any decisions made, this will be a helpful memory aid for a person with FASD.

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8 What people with Fetal Alcohol Spectrum Disorder want you to remember

Children with FASD may engage in behaviours that look like lying and can make poor decisions. This can mean young people with FASD are more likely to be involved in the justice system. The desire to please and difficulty remembering can have a significant impact in these situations.
An individual with FASD may experience difficulties with impulse control, understanding consequences of actions and risks. This results from impairments in memory and poor connection between emotional and logical thought.
Engaging in social interactions can be difficult for people with FASD, and if people behave differently to their expectations, they may respond by over-reacting or shutting down.

Sometimes people with FASD may find it difficult to focus on, and give or maintain attention to a person or task.

               What people with Fetal Alcohol Spectrum Disorder want you to remember – 11
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9 Helpful links

NOFASD Australia
FASD Hub Australia
DDWA - Supporting School-age Children with Fetal Alcohol Spectrum Disorder
Marulu Strategy
Practice Guide - Early Childhood Early Intervention

Guide - Conversation style guide

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