Tē Taea, Ka Kore Anō | Understanding FASD

 

 

He aha a FASD? What is FASD?

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder which results from prenatal alcohol exposure. Individuals with FASD can experience complex physical, behavioural, learning and intellectual problems that persist throughout the lifespan. FASD is diverse and individual depending on when and how much alcohol was consumed during brain development.

Research has consistently found the brain to be the organ most sensitive to the effects of prenatal exposure to alcohol, as the brain is developing throughout the entire pregnancy. The wide continuum of impacts includes both physical and cognitive (learning and behavioural) effects. The IQ range for all on the spectrum is from 20 – 130. Approximately 20% of those diagnosed in New Zealand have an intellectual disability, defined as an IQ below 70. This qualifies them for disability support. However, IQ is not the only measure of brain function and people suffering from FASD can have an ‘average’ IQ but are seriously affected by deficits in their adaptive and executive functioning. 

Prenatal alcohol exposure: the facts

Our partner organisation Alcohol Healthwatch have an excellent information sheet about prenatal alcohol exposure and its longterm effects if the child is born with FASD. This is an excellent resource to download or pass on to anyone trying to get pregnant, or who is already pregnant. 

Click here, or on the image below to download. 

 

Prenatal Alcohol Exposure, Lifelong Effects

Can't, Not Won't

Thinking differently

A shift in thinking is needed when working alongside those diagnosed with FASD. Typical behaviour management strategies don’t work. Remember children diagnosed with FASD won’t learn from consequences. Sending them to their room or taking away a privilege may give the caregiver immediate satisfaction or relief but it will not have an impact on the child’s behaviour.

This is a brain-based, invisible, physical disability and is NOT intentional behaviour. FASD is a lifelong disability and individuals affected by FASD will not grow out of their disability.

The shift is from seeing a child as one who won’t do something to one who can’t.


For caregivers

Bad --> Frustrated, defensive, challenged

Lazy --> Tries hard

Lies --> Confabulates, fills in

Doesn't try --> Exhausted or can't start

Mean --> Defensive, hurt, abused

Doesn't care, shut down --> Can't show feelings

Refuses to sit still --> Overstimulated

Fussy, demanding --> Oversensitive

Resisting --> Doesn't get it

Trying to make me mad --> Can't remember

Trying to get attention --> Needing contact, support

Acting like a baby --> Dysmaturity

Steals --> Doesn't understand ownership

Doesn't try --> Worried about failing

Inappropriate --> Doesn't understand personal space

 

For supporters and educators

Parents, caregivers, teachers or others working with children diagnosed under FASD often take their behaviours personally and forget that the child is often confused, scared and not feeling good about themselves. It is important as a support person to try and shift your feelings from:

Hopelessness --> Hope

Fear --> Understanding, knowledge

Chaos, confusion --> Organisation, meaningfulness

Anger --> Reframing perceptions, defusing

Power struggles --> Working with, rather than at

Frustration --> Trying differently, not harder

Exhaustion --> Re-engergised, new options to try

No good outcomes --> Seeing, supporting strengths

Isolation --> Networking, collaboration

 

In any situation – shift your approach to intervention!

Traditional behaviour management --> Recognising brain differences

Applying consequences --> Preventing problems

Traditional interventions --> Expanding professional options, creating a toolkit of individualised strategies

Changing people --> Developing effective strategies, changing environments

 

The above is adapted from 'Trying Differently Rather Than Trying Harder', by Diane Malbin. 

 

Diagnosis and Assessment

If you suspect your child has FASD (Fetal Alcohol Spectrum Disorder) but has not yet been diagnosed, it is 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: 

  • there is a known history of prenatal alcohol exposure during the pregnancy, and: 
  • there are concerns for your child’s learning, behaviour, social or emotional functioning.  

 

Diagnostic Criteria 

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 5% of individuals show facial features, which occur if exposure is early in pregnancy when the face is forming. These are small eye lengths, a thin upper lip and a flat philtrum (groove running from nose to upper lip). Individuals without these facial features are no less affected by the deleterious effects of alcohol on their brain development.

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 neuropsychological testing and a ruling out of other causes for the difficulties found, including genetic disorders. Other neurological conditions can be mistaken for FASD and need to be considered in the differential diagnosis when there are signs, such as extremely low IQ. Other conditions such as Attention Deficit Hyperactivity Disorder and mental disorders can 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 management.

The ten brain domains 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 scholastic 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.

Assessment

An FASD assessment needs a clinical team specifically trained in diagnosing FASD, typically a multi-disciplinary team, including a paediatrician, psychologist, and ideally with speech and occupational therapist. Not all 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 to determine whether there is a neuro-developmental condition which may inform your support that may be consistent with helpful FASD approaches. 

Assessors will need credible information about pre-natal alcohol and substance exposure. It is important that such information is 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 scholastic reports and/or previous medical reports. A diagnosis of FASD should not be ruled out unless or until a full neurodevelopmental assessment including a battery of neuro-cognitive assessment is completed. This may mean waiting until the child is older than 7 years of age when executive function is mature enough to assess.

 

The Value of Diagnosis 

Many parents wonder about the value of getting a diagnosis. While many people are averse to ‘labels,’ understanding the cause of the difficulties can be transformational for families. It allows families, caregivers, and others to understand the child’s behaviour and needs better and to know how to respond supportively and appropriately. 

When a diagnosis is made a report is provided to explain the findings and describe the areas of strength and impairments so family, caregivers and others working with the child know what to do to nurture the child’s strengths and more effectively accommodate their difficulties. The explanation to the child can be guided by the clinician – how and when will depend on the developmental level and current situation of the child.

Learning about their own brain diversity can help the child to understand their strengths and needs and work together with their caregivers and teachers. Ideally a diagnosis should be hand-in-hand with providing FASD-informed support. It can be helpful to have this support extend to engaging with the child’s school and classroom teachers, alongside the caregiver. 

A diagnosis of intellectual disability as part of the 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. 

 

We would like to acknowledge Dr Valerie McGinn for her advice and input into this section.

 

female clinician making notes

 

 

 

Prevention

 

There is only one thing that prevents FASD – zero exposure to alcohol while pregnant. However, New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining the easy choice during pregnancy. Support from friends, partners and families is especially important.

If drinking in the early stages of an unplanned pregnancy has occurred, then stopping drinking immediately will reduce the possibility of FASD. It is wise to seek professional help if stopping drinking at any time during pregnancy becomes difficult.

FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use on the Alcohol Healthwatch website and the Alcohol Action NZ website. 

 

Learn the Basics – Webinar

In November 2021 we launched our very first webinar series for FASD-CAN members, hosted by the wonderful Tania Henderson – "Tina me te Ako: Lunch and Learn".

Think of them as FASD 101 - a great overview of the basics. 

Click here to watch the recordings – but you'll have to be a member to do so. 

 

FASD Webinar – Lunch and Learn

Primary Disabilities, Secondary Challenges

 

The Neurobehavioral Model

The neurobehavioral model is supported by over 50 years of neuroscience research, and is considered best practice for working with kids who have neurobehavioral challenges including FASD. Research has found this framework increases understanding, lowers frustration, expands options, and reduces and prevents problems.

Parenting through a neurobehavioural lens can decrease the frequency and intensity of secondary behaviours and, at times, prevent them altogether.

 

"The gift of the neurobehavioral model is in redefining behavioural symptoms in a manner consistent with research. A profound shift is created in moving from anger to compassion, from blaming to acceptance, lessening frustration on all sides, and improving outcomes." - FASCETS.org

 

Primary Behaviours

Diane Malbin (who developed 'The Neurobehavioral Model') states that "FASD is an invisible, brain-based, physical condition" and lists these as the areas of primary disabilities in those with FASD:

  • Dysmaturity: socially or developmentally younger than their chronological age
  • Sensory system integration (over and under sensitivity to stimuli)
  • Nutrition
  • Language and Communication
  • Processing pace (how fast the brain works)
  • Learning and Memory (and inconsistent performance)
  • Abstract thinking (including difficulty predicting outcomes)
  • Executive functioning (including difficulty generalising, forming links & making associations)
  • Strengths – there are many strengths in all individuals

 

Secondary Challenges

Secondary Behaviours are what the neurobehavioral model describes as 'defensive behaviours'. They are normal reactions to pain and discomfort, and often develop over time due to 'poor fit' within the environments through which the children move. When a child's primary characteristic differences (see list above) are not recognised, and the child is then deprived of appropriate supports or accommodations, we see these secondary challenging behaviours emerge as a result. Where there is a poor fit, there are problems. Examples of these problems might be aggression, meltdowns, shutting down, anxiety, becoming easily tired, depression (along with many more).

Diane Malbin lists these as secondary behaviours:

  • Fatigue, frustration
  • Anxious, fearful
  • Rigid, resistant, argumentative
  • Poor self-esteem
  • Self-aggrandisement, attempts to look good
  • Isolated, few friends, often picked on
  • Acts out, aggression
  • Interrupted school experience – stand downs, suspensions, expulsion
  • Sexual problems
  • Truancy, run away and other forms of avoidance.
  • Trouble with the law
  • Depression, self-destructive or suicidal (most common in adolescents and adults)

When behaviours (both primary and secondary) are understood differently, the shift is made from judging and reacting to understanding and exploring. There is less anger and frustration. The same old behavioural symptoms now mean something different, because they are understood differently. That is the paradigm shift.

 

“Children exhibit challenging behaviour when the demands being placed upon them outstrip the skills they have to respond adaptively to those demands. The same can be said of all human beings.”

- Dr. Ross Greene

 

The possibilities for accommodations are endless, however it does take practice to really be able to focus in on what might work for your unique child. Accommodations are successful when developed with each individual child’s brain function in mind.

Because individuals with neurobehavioral challenges have a brain-based, physical disability, they need (and deserve) accommodations for their condition. When we see that they cannot meet an expectation due to their primary characteristics (lagging cognitive skills), we need to adjust those expectations to be in-line with their skills. For example, if we know they process information slowly (primary characteristic), we need to give them more time and/or provide them with visual cues. If we know they can only hold on to one direction at a time (vs two- or three-step directions), we need to provide one direction at a time. If we know that they are younger socially and emotionally, we need to teach and explain things to them at developmental age level.

(Reference - Eileen Devine: The Neurobehavioral Model

Language to use for FASD

 

FASD Language Guide

The language we use around those with FASD is extremely important to enable them to maintain dignity and respect. This is essential basic reading for everyone: caregivers, whānau, professionals, educators. Click here to read. 

FASD by Numbers

It's hard to get a handle on the numbers around FASD here in Aotearoa, because a prevalence study has never been done. 

Thanks to studies in other parts of the world such as Canada and Australia, who have a similar social drinking culture to us and a similar colonisation history, we have a fair idea. 

A recent article by Paula Penfold has a good angle on FASD numbers in New Zealand. 

Read it here.

Every year up to 3,000 Kiwi babies are born with fetal alcohol spectrum disorder (FASD). It's permanent brain damage caused by alcohol exposure in the womb.

E Noho ana me | FASD Living with FASD

Tā Koha Mai | Donate

Thanks so much for making the decision to donate. Your koha will help us spread awareness of Fetal Alcohol Spectrum Disorder (FASD) and enable  whānau who are living with FASD to live their best lives.

Ko Ngā Pātai Pūputu | Frequently Asked Questions

 

 

What causes FASD?

FASD can ONLY be caused by maternal alcohol consumption during pregnancy. Alcohol is a teratogen which means it is a substance that reaches the baby in utero and can change the structure and function of developing organs. The brain and central nervous system, which continues to grow throughout gestation, is susceptible to the damaging effects of alcohol at any stage of pregnancy.

 

How much drinking by the mother can cause FASD?

There is no known safe amount of alcohol that can be drunk during pregnancy and there is no known safe time during a pregnancy when alcohol can be drunk. The effect will vary depending on the timing and the quantity of alcohol consumed. FASD is more often associated with binge drinking – four or more standard drinks on an occasion – or continuous moderate drinking – two or more drinks. However lesser amounts have been found to adversely affect brain development in subtle ways. Not all children exposed to alcohol are affected to the same degree, which means genetics also have a role. The New Zealand Ministry of Health advises that it is safest not to consume any alcohol during pregnancy. 





Can drinking by biological fathers cause FASD?

The importance of a father consuming alcohol before conception is an area of active research internationally. FASD is the result of direct exposure to alcohol’s toxic or ‘teratogenic’ effects on the developing cells of the fetus. However there is some evidence that alcohol consumed before conception by the father or the mother may alter gene expression and set up a predisposing risk factor for some individuals. It is recommended that men intending to conceive a child do not drink for 60 days before conception as an approach which carries the least risk to the unborn baby. It will also help the mother if the father is supportive in abstaining from alcohol at this important time.

Can FASD be cured?

Sadly no. FASD causes changes to occur in the underlying cell structures of the organs that affect an individual’s ability to function normally. While some physical birth can be repaired such as heart defects, FASD is a lifelong, brain-based disability. With understanding, caregiver education and the right kind of support, people affected by FASD can go on to lead fulfilling lives.

What's different about the way people with FASD behave?

Every person affected by FASD is unique. Each person will have their own strengths and areas of need, however a person with FASD will generally have a cluster of challenges that affect them in a variety of ways. They will struggle with self-regulation and managing every day activities. At certain times they may become overwhelmed and easily aroused to a state of rage. They will struggle with academic learning. They may be impulsive and have difficulty understanding consequences. They will struggle with relationships and social skills. Some of this behaviour can mimic that of other brain-based disabilities and they are frequently misdiagnosed.

How is FASD diagnosed?

 

A multi-disciplinary diagnostic team is required to make an FASD diagnosis which includes medical and neuropsychological assessment. Four categories are assessed according to a carefully prescribed criteria – growth deficiencies, gestational alcohol exposure, facial characteristics consistent with Fetal Alcohol Syndrome, and psychological domains.

For more information about diagnosis in Aotearoa NZ, click here

How many babies are born with FASD annually?

Not all babies exposed to alcohol before birth will have FASD. International statistics suggest that between 1 – 5% of live births each year have FASD. In New Zealand, which has a relatively high binge-drinking culture, it's estimated that up to 3000 babies with FASD could be born annually.

Does drinking during breastfeeding cause FASD?

No. FASD is only caused during pregnancy. However alcohol does enter breast milk and can disrupt normal feeding, nutrient intake and your baby’s sleep patterns. It's definitely best to express milk beforehand if you are intending to drink alcohol.

How can FASD be prevented?

 

There is no safe level of alcohol during pregnancy. It can take just a couple of drinks at the wrong time for permanent brain injury to occur. The best prevention of FASD is zero alcohol during pregnancy.

Currently New Zealand’s drinking culture and unplanned pregnancy rate are crucial barriers to FASD being prevented. Rates of FASD will reduce when our society stops normalising heavy use of alcohol, and when women are fully informed and supported to make abstaining the easy choice during pregnancy. Support from friends, partners and families is especially important.

If drinking in the early stages of an unplanned pregnancy has occurred, then stopping drinking immediately will reduce the possibility of FASD. It is wise to seek professional help if stopping drinking at any time during pregnancy becomes difficult.

FASD-CAN is primarily concerned with supporting individuals with FASD and their whānau and caregivers, but there is much more information about alcohol use on the Alcohol Healthwatch website and the Alcohol Action NZ website. 

Where can I get more info about drinking in pregnancy?

 

Your GP or Lead Maternity Carer (midwife) will be a good source of information. If you are struggling to stop drinking, they may refer you to Child Development Services or Alcohol and Drug Services at your local DHB.

The Alcohol and Drug Helpline has service directories and lots of helpful info – check the website or call 0800 787 797

Alcohol Healthwatch

• Actionpoint - Communities targteting alcohol harm

Fetal Alcohol Network NZ or call 09 5207037

• Te Hiringa Hauora– Māori Health Agency

 Know FASD – Alcohol in utero knowledge base
Click here for a great interactive tool which shows how FASD may present across a person’s lifespan

• Don’t know, don’t drink
Click here for a FAQ brochure prepared by the Health Promotion Agency

Caregiver and Whānau Support

If you have an individual with FASD in your whānau, you'll find a wealth of information, education, tips, strategies and real life stories here.

 

Learn more

Information for Professionals

If you're a professional health support worker, counsellor or educator you'll find information that will help you with supporting FASD individuals here.

 

Learn more