Supporting children and families affected by fetal alcohol spectrum disorders (FASD)

Supporting children and families affected by fetal alcohol spectrum disorders (FASD)

Vicki Russell, Sara McLean and Stewart McDougall
10 December 2014

This webinar described some of the adverse consequences of FASD, and outlined effective strategies for supporting children and families affected.

Audio transcript: Supporting children and families affected by fetal alcohol spectrum disorders (FASD)

Audio transcript (edited)

Webinar facilitated & speakers introduced by Jane Weston

WESTON

Good afternoon everyone and welcome to this CFCA webinar, "Supporting children and families affected by fetal alcohol spectrum disorders".  My name is Jane Weston and I've joined the Australian Institute of Family Studies with a background in education and just prior to coming to AIFS in June this year I worked with an education colleague Sue Thomas to research and write a FASD resource for educators in the Kimberley region.  I guess it's this context that allowed my CFCA team colleagues to invite me to chair this session.   Today we're going to hear about some of the important work taking place around the issue of fetal alcohol spectrum disorders.  It's true to say that the last few years has seen a rapid escalation in the call to action in Australia in relation to this difficult to diagnose health issue. 

The inaugural Australian Fetal Alcohol Spectrum Disorders Conference held in Brisbane in November last year further raised our awareness about FASD and there is a renewed focus on addressing the issue across the nation.  The fact that there are over 500 registrations to today's webinar attests to this interest.  This webinar is part of a series of resources we are currently releasing on FASD with a focus on supporting children and families affected by FASD, in particular, this webinar will focus on strategies for supporting children with FASD in out-of-home and kinship care. 

I'd like to draw your attention to two papers to access at the CFCA website, "Fetal alcohol spectrum disorders current issues in awareness, prevention and intervention", and "Supporting children living with fetal alcohol spectrum disorders practice principles".  These two papers were authored by two of our presenters today, Sara McLean and Stewart McDougall. 

Before I introduce our speakers I would like to acknowledge the traditional custodians of the lands on which we are meeting.  In Melbourne, the traditional custodians are the Wurundjeri people of the Kulin Nation.  I pay my respects to their Elders past and present and to the Elders from other communities who may be participating today.  It is now my pleasure to introduce today's presenters, Vicki Russell is CEO of the National Organisation for Fetal Alcohol Spectrum Disorders.  She's also a PhD candidate completing research on fetal alcohol prevention in three countries.  Vicki is also trained in narrative practice for counselling and professional supervision and has completed a 12-month certificate in Mastery in the fetal alcohol- neurobehavioural approach.  She's delivered education and training throughout Australia and presented papers on FASD at international and national forums.

Sara McLean our second presenter is a registered psychologist and Research Fellow with the Australian Centre for Child Protection at the University of South Australia.  Sara has extensive experience working with children and adolescent mental health and holds a special interest in children who have experienced a range of early life adversities, and display challenging and aggressive behaviour.  Her research focuses on supporting the foster carers, professionals and children in out-of-home care placements to experience more stable and continuous relationships in care. 

And finally, we have Stewart McDougall and he's part of the research team at the Australian Centre for Child Protection and during this time has worked with Dr Sara McLean on expanding the centre's research in the areas of FASD and child welfare.  In fact, Stewart presented his work reviewing interventions for children with FASD to the recent Australasian Fetal Alcohol Spectrum Disorder's Conference and has co-authored several papers on the subject in conjunction with Sara McLean.

Just a few housekeeping details before I hand you over to our first speaker.  One of the core functions of CFCA information exchange is to share knowledge, so I would like to remind everyone that you can submit questions via the chat box any time during the webinar.  You will see that box at the bottom of your screen.  There will be a limited amount of time for questions at the end and Vicki, Sara and Stewart will be happy to respond to as many of these questions as possible.  We also want to continue the conversation that we begin here today and to facilitate this we'll set up a forum on the CFCA website and we'll send you the link to that forum later this afternoon.  Please remember also that this webinar is being recorded and that the audio transcript and presentation slides will be made available again on the CFCA website in due course. 

And I guess just finally if you are an educator working either in or with schools, I'd like to draw your attention to the recent school focus resource that I spoke about earlier. It was posted onto the CFCA website yesterday I think so you will find it with the other two papers I mentioned earlier.  It is called, "Understanding and addressing the needs of children and young people living with FASD".  So over to you now Vicki, Sara and Stewart and a very warm virtual welcome to all of you participating in today's webinar.

McLEAN

Thank you Jane, and it's Sara McLean speaking here and I'd like to welcome you all to this afternoon's webinar and acknowledge that we here in Adelaide are meeting on the lands of the Ghana people and we pay our respects to Elders past and present.  What Stewart and I will be talking about today forms part of the program of research that we've been involved with at the Australian Centre for Child Protection, really as Jane has mentioned looking at the impact of a range of early life adversities on children's development particularly their brain development and their neurocognitive compromise. And what that might mean particularly for children placed in out-of-home care. What that means for them and their opportunities in life once they are placed in care and therefore there is now an additional layer of complexity in their lives caused by systemic issues that compounds any already significant developmental issues that might be present.

Just for interest sake I wanted to let you know that we are now at the stage of translating that knowledge that we have gained through literature searches and synthesising diverse bodies of literature into practice, into principles of practice, into resources and that are aimed at supporting foster placement stability and kinship placement stability.  If you want to know more about our work please come and visit our website or from contact with us and similarly the NOFASD Australia website has a whole range of resources that many of you would be familiar with that are obviously more specific to the fetal alcohol syndrome spectrum disorder, particularly if you are a foster carer or you are a worker supporting foster care carers.  If you have particular expertise in the area of occupational therapy or speech, we would love to hear from you and have you share your expertise in supporting children with us.

As Jane has mentioned we're going to be focusing really quite specifically on foster care and kinship care and we won't have time to address a lot of the broader issues that are really quite topical at the moment around the space of fetal alcohol spectrum disorder that relate to issues of diagnosis to issues of prevalence in any detail to issues of other vulnerable populations.  So very quickly Stewart is going to start by providing some context around the issues of fetal alcohol spectrum disorder, speak briefly to the impact and prevalence of this issue, 

And then I just really want to talk about the significance of this issue for children in care and their caregivers.  I want to touch on some of the principles that are effective in working with children with neurocognitive compromise.  Some of these are detailed in the practice paper that Jane's referred to.  And I also want to touch on what foster carers tell us is significant and effective in supporting children.  And then Vicki Russell from NOFASD Australia is going to step through some of the principles that she uses in more detail and give some more rich examples of how she uses that work in her practice in supporting foster carers both nationally and internationally.  Stewart.

McDOUGALL

Hi everybody, it's Stewart McDougall speaking now and I'm going to do a quick run-through on what fetal alcohol spectrum disorders are, briefly touching on the impacts and quickly discussing the prevalence.  We've got a lot to get through today so if anything is rushed most of this information is also in the issues paper put out in conjunction with this webinar.  So alcohol has long been recognised as a teratogen, so a substance capable of interfering with the development of a fetus.  Fetal alcohol spectrum disorders is not itself a diagnostic term but rather an umbrella term covering a range of diagnoses capturing the full spectrum of physical cognitive and developmental symptoms that can be caused as a result of prenatal exposure to alcohol.

It's very important to note that it's often described as a hidden or invisible difficulty as a large number of children affected by exposure to alcohol prenatally do not show any physical signs, they may have significant injury to their brain as a result of exposure to alcohol but there maybe no outward signs, so none of the facial features which are characteristic of the more severe end of the spectrum, these may not be present in a large number of children affected by alcohol.  In terms of the primary characteristics, as I mentioned there are distinct facial features associated with sort of the more severe end, so fetal alcohol syndrome but fetal alcohol syndrome only represents a small portion of individuals that fall under the FASD umbrella.  There are other physical changes including growth restriction, but again these are not present in all children. 

What's more important is the changes in brain function, so exposure to alcohol prenatally has a quite diffuse effect on the brain, it affects almost the entire brain and as a result a large range of cognitive domains.  I've presented a small list there, so it can affect intellectual ability although often this is not shown in IQ as children can have quite a range of IQs despite prenatal exposure to alcohol. It can affect executive functioning which is planning and coordinating of behaviours, it can affect their language, it can affect their attention skills, gross and fine motor functions, so that's gross motor functions is larger movements such as crawling, jumping, running, as well as fine motor functions which are smaller movements such as picking things up.  It can affect their social skills and all of these things can culminate in significant behavioural problems.

While the list of demands is extensive it can be often more helpful to think of how these present in the behaviours of the children.  I've got some examples here.  So in terms of memory they may have trouble learning and retrieving new information, they might remember things inconsistently, so what's taught and remembered one day may not be remembered the next.  They may have language difficulties such as being talkative but understanding little of conversation.  They may have difficulty especially with non-literal language, so metaphors.  Little understanding of social conventions such as taking turns in conversation, and they may be able to repeat instructions well but then be unable to follow and act upon those instructions.

They may have a slower cognitive pace so they can only understand instructions if given very slowly or may miss pieces of information that are given to them.  The attention and organisational problems, they may be slow to grasp new tasks, they may be easily distracted and they may be slow to move from one task to another.  They may also have trouble translating information in one situation to another situation, so something that they learn at home they may not be able to translate that information into the school setting.  They may repeat the same mistakes, as learning from previous mistakes is very much a deficit in this population.  They may have difficulties predicting consequences as well so cause and effect reasoning may not be particularly strong.  They can have trouble thinking in abstract so trouble setting goals, planning time, and abstract concepts such as money.  And it can often be quite impulsive behaviour.

Moving onto the secondary characteristics.  Now, these characteristics are - they arise out of the lack of fit between the child's environment, so it's a poor fit between the person and his or her environment.  So all of the primary characteristics just described without proper support, they can lead to a number of poor life outcomes.  So these secondary characteristics may include disruptive schooling, trouble with the law, alcohol and drug problems, and involvement with child protection and child welfare.  In terms of prevalence, I won't go into too much detail regarding the prevalence as it is quite debated and I could take up most of the webinar talking about it.

Just briefly an accurate prevalence for FASD in Australia is not known.  There are a number of reasons for this including incomplete and inconsistent information regarding maternal history of alcohol.  There's a lack of awareness of FASD, there's a lack of specialised diagnostic and support services as well.  So professionals may be reluctant to diagnose a child with FASD if they don't feel that there's a support service available for that, they may wonder why diagnose if there's nothing then available to help this child.  While no accurate prevalence is known in Australia there have been studies in the United States and Western Europe that suggest between 2 and 5 per cent of children in the general population may have FASD.  And there are certain populations that are at risk as well and of particular interest today the out-of-home care population may be at significant risk of experiencing a higher prevalence of FASD.  Now I'll hand back over to Sara McLean who will continue.

McLEAN

Thanks, Stewart.  One of the important questions I think for us at the Australian Centre for Child Protection is why are we interested in fetal alcohol spectrum disorder.  Significantly as many of you will know and I won't go into much derail in the interests of time but alcohol is involved to a significant degree in child protection notification substantiations and involved to a significant degree amongst families who have a child ultimately placed in care.  We know that alcohol consumption reflects complex parental issues and alcohol consumption during pregnancy similarly reflects complex relationship and the interplay of issues including intergenerational trauma, parental vulnerability, stress and coping.

These factors are of vital importance and vital interest to us because of their intimate relationship to child protection concerns and in turn to children's development.  We feel that you know for children that do enter out-of-home care and do have the cognitive and behavioural effects that result from prenatal alcohol exposure and undiagnosed fetal alcohol spectrum disorder, there really is for those children a combination of risk factors that in many ways form a perfect storm of risk in which it's sadly probably more unlikely than likely that a child will ever be able to experience without targeted intervention a stable family life, a stable schooling experience and connection to community that we take for granted for other children.

This is for a range of reasons.  When children are removed there maybe ongoing issues of substance use in the family of origin which may make reunification more difficult.  The child with behavioural issues as a result of alcohol exposure can have behavioural issues that need higher levels of monitoring, structure and supervision.  This is challenging for any parent and let alone in the context of ongoing substance use.  For foster carers and teachers supporting children in out-of-home care, they may not have any meaningful information about a child's background for the best possible reasons but without the context or the background to children's behaviour, a lot of children's behavioural will be interpreted as unacceptable or intolerable. 

For all of these factors on top of and including the impact of trauma of abuse, the original abuse, and neglect, removal from home, all this combination of factors really culminate in a large amount of risk for children as they enter out-of-home care.  So something very significant happens we think in that space, in the space where children's behaviour caused by this often-invisible physical disability, undiagnosed brain issue, meets parenting and foster patenting in particular.  And we do know that parents of children with fetal alcohol spectrum disorder whether they're biological parents or foster parents report higher levels of stress than other caregivers.  And they often struggle not to develop negative views of the children in the face of this behaviour that quite often does not seem to respond to traditional discipline techniques.

We also know there's the cohort of children that enter into care, some 15 per cent that don't seem to ever have the experience of placement stability, they seem to go on to experience multiple placements and we think it's reasonable to assume that at least for some of these children there's some overlap in that cohort of children and those children who have been exposed to alcohol prenatally.  And the latest information that we have about the prevalence of fetal alcohol spectrum disorder in out-of-home care that comes from a meta-analysis in the Journal of Paediatrics places the average prevalence of fetal alcohol spectrum disorder across all forms of out-of-home care at 16.9 per cent.  Even by conservative estimates that's at least three to five times what we would find in the typical report from average population estimate.

So one of the things we really want to highlight today is the significance of fetal alcohol spectrum disorder to foster carers' lives but also the significance of foster carers to the lives of children with fetal alcohol spectrum disorder.  There's an often-cited study by (indistinct) that highlighted in terms of preventative factors including early diagnosis and some other factors one of the main preventative factors in terms of preventing secondary - poor secondary outcomes that Stewart spoke about for children and adults with fetal alcohol spectrum disorder was stability, the presence of a stable nurturing environment.

So it becomes really clear that it's important for us to support foster carers and kinship carers because these are the people that are trying to provide that protective stability to children, often in the context of behaviour issues that are three to four times higher than other children even by conventional measures.  Foster carers when this research has been looked at ask for information about the child's history, it's often not provided, not available or according to foster carers withheld when it is available.  They want to have their feelings validated, they want to have it acknowledged that conventional strategies don't work, they want information about effective strategies and they want a range of social supports, financial supports, good access to medical care and good diagnostic care.

One of the things that comes out of this study is that professionals that support foster carers have very little information about fetal alcohol spectrum disorder and often ironically the carers themselves have more information about the disorder than the professionals, we professionals that are supporting them.  And in that context often carers are blamed for children's behaviour or children are blamed for their behaviour.  So very quickly I want to touch on a recent study that a colleague of mine, Kerry Scholten and myself have just completed where we've looked at not just the support needs of carers but basically what they think works and their experience of supporting children in out-of-home care.  And Kerry completed this work as part of her social work thesis. 

For those carers they were very clear in highlighting the fact that they had been through multiple diagnoses, their children had been through multiple medications, they highlighted very clearly the sensory issues that were significant for children.  So they really highlighted the importance of being aware of a child's sensory skin and we really need to I think be very mindful of a child's sensory environment and develop better supports for carers in that space.  Vicki is going to talk a little bit more about that I hope.

Another thing that caused a lot of strain for foster carers was around the incredible pressure that was put on them due to the significant sleep issues, difficulty with sleep, poor sleep patterns and so on.  In terms of coping strategies, one of the main things that they talked about which was helpful was around reframing their expectations for children, I will talk a little bit more about that and Vicki will talk about that I'm sure.  They had high levels of commitment despite incredibly challenging behaviours and they talked about the significance of developing an attitude of going up and down along the ride with children.  And as we talk abut the principles of working alongside carers and children I think that's a really nice metaphor being able to ride alongside children in this journey because it is a lifelong journey.

I'm going to really blast through these strategies because these are outlined in more detail in the practice principles' paper that we've all put together and I want to give Vicki plenty of time to talk about her experience in more detail.  But very briefly, I just wanted to highlight the significance of developing a common understanding, a common language around this issue and involving caregivers.  As we go through these issues I'll pop up some of the comments that the foster carers that took part in Kerry's study made about some of these issues, just to provide a little bit of context.

Given the multiple players and multiple stakeholders in this space the children will be involved in multiple services, it's really significant that we work towards a common understanding of fetal alcohol spectrum disorder and the behaviours that go alongside that as a physical or brain-based issue.  And caregivers, what we found in our - Stewart and I found in the systematic review of evidence-based interventions was the involvement of caregivers was really critical to that.  And in evidence supported models such as caseworker models like the key worker models, critically have as part of their common central focus a focus on communicating a common understanding about fetal alcohol spectrum disorder as a brain-based issue and supporting foster carers to understand that but also helping them to explain that to others.  And in the absence of that sort of common understanding the world is a very difficult place for young people because consistency and structure is important for all children but especially so for these young people. 

Our second principle that came out of our work was around as much as possible we need to adapt our services, the approaches we take and adapt the training that we have been provided with to suit the needs of children and carers rather than making children trying to fit into our systems and services.  While we know that the primary disabilities caused by fetal alcohol spectrum disorder can't be shifted necessarily but the secondary consequences can be prevented as much as possible by a better fit between our services, our interactions with children and our support for foster carers.  And these quotes from foster carers really exemplify the kind of experience that they have and their frustration in their search for more tailored supports in the face of constantly receiving this kind of usual care approach.

Some of the things that we're very comfortable with include the verbal mediums, verbal mediated counselling.  Some of the things particularly for out-of-home care, short term contracts, rotating staff, multiple relationships that children need to negotiate, these things are difficult for children who are affected by or living with fetal alcohol spectrum disorder.  Some of our usual care approaches really I think need to be reviewed.  Vicki is going to talk about this in more detail I think but basically one of the most evidence informed principles is structuring and modifying and supervising the environment.  Children struggle with adaptive and flexible thinking, in particular managing change and moving from one situation to another.  Transitions and managing change and introducing change is a huge trigger for children's behaviour.

This foster carer for example is giving an example; the first quote he's talking about a structure provides a sense of comfort for young people for their internal chaos.  Modifying the environment is very important when it comes to the child's sensory world and the carers in Kerry's study talked about the sensory environment very much and how they became acutely aware of children's sensory environment.  Transitions are especially difficult and moving to new environments and introducing new people is especially difficult for these young people and is often a trigger for behaviour outbursts.  It's quite ironic for us that these children that might be the ones that very much need the very most stability, continuity and structure in out-of-home care are the ones that end up with multiple relationships, multiple transitions to match.

Vicki will talk about this in more detail I'm sure but reframing behaviour is a very simple principle but ii have found very critically important in supporting foster carers.  It's making the shift from being able to see behaviour as wilful to seeing behaviour as unintentional.  It's a really big shift that can come in foster carers simply having the information about mum's drinking from her caseworker.  It's often not provided, it's often not available but it's something to think about because the beliefs that we hold about children's behaviour really influence how willing we are to persist with children in a placement situation.  And it can mean the difference between seeing a child as wilful or defiant versus seeing the child as a child who has slowed information processing or a language problem.  And particularly in the out-of-home context it can make the difference between seeing a child who doesn't want to be cuddled or touched as a child who has a sensory issue rather than perhaps a child who has difficulty in forming attachment with you or doesn't need an attachment to you.

And so finally the last point we wanted to make was that children who are living with fetal alcohol spectrum disorder need to - we need to teach them differently, we need to change the way that we teach.  Some of the assumptions about children's ability to reflect on their behaviour, to learn from experience, to link actions to consequences, and to transfer what they've learned from one situation to another really don't hold for children in this situation.  So we need to work differently in our work with children and Vicki will talk about that in more detail I'm sure.  And I just want to leave you with this thought that applies equally to when we place a child with fetal alcohol spectrum disorder or living with fetal alcohol spectrum disorder in care, but also equally to our attitude towards carers supporting children with fetal alcohol spectrum disorder.  Vicki.

RUSSELL

Thanks Sara.  I'm going to be talking about a fetal alcohol-neurobehavioural approach, it's a term coined by FASCETS in the United States and it's both an understanding and an approach to offering support to children and older individuals living with an FASD.  The logic considers behaviours are usually the only symptoms that we see of the underlying physical brain impairment and FA-NB is an invisible physical disability - that is the understanding - therefore FA is understood as a physical brain-based disability with behavioural symptoms.  With this understood then we can recognise and provide accommodations of strategies the same as we would for children or other individuals living with any physical disability.

These are the areas mentioned already by Stewart, the developmental level of functioning, sensory systems, nutrition, language and communication, processing pace, how fast the brain works, learning and memory, abstract thinking is added in I think from before, executive functioning, the capacity to plan, sequence, prioritise and follow-through, and of course the strengths that the child is born with.  And the important consideration here is that not everyone will have all of those symptoms of fetal alcohol exposure and neither are the symptoms unique to fetal alcohol spectrum disorder, it's the matter of degree and the interplay of these primary characteristics and the frequency that are the challenges that we are going to be trying to address.

The strengths.  So the primary characteristics - I'm going to move on, we've covered the primary characteristics, we've covered the strengths, sorry, I'm back on track now.  The secondary characteristics are what Diane Malbin describes as defensive behaviours and they develop over time when there's a poor fit between the individual and their environment - that is, the expectations they are expected to meet.  And success is a real struggle for people living with an FASD because we see the person but not their brain difference, you can't see the brain, you can't see how functioning has been interrupted.  The person may become easily tired or fatigued for example, may avoid in the face of challenges we do not even see, they may be anxious, lonely or isolated, fearful or withdrawn or depressed, shut down or flat effected and these can all be secondary defences and they as well may happen as an interplay, so they may change from time to time.

So what we're asking people to think about is to shift our thinking and seeing this child if I can speak in the singular, in a different way.  So there are certain principles that guide the FA-NB approach and Sara has mentioned one of them already which is that the child, the individual, the adolescent, the adult regardless of age can't rather than won't.  So their behaviour that is often labelled as wilful, deliberate, defiant et cetera, misses the point that the brain difference really does define what they can and can't do. 

The second principle is the developmental age is considered rather than their chronological age.  The importance of this is that a person who is aged ten may be functioning as a four year old and immediately once we can make that shift our expectations of that person will change, we will modify what we expect them to be able to do.  The third one is really that those expectations become much more realistic and because they are external to the child we call them environmental.  And there are multiple ways in which individuals living with FASD can have successful lives. 

The first way we start is by observation because all of the time whatever action we are taking it always beings with observation.  So when caring or supporting a person living with an FASD if something is not working rather than react first ask yourself what do I notice or did I notice was in the environment.  For example some questions you might pose to yourself is what did I just see, what happened just before, we're talking now about secondary characteristics and effect, the symptom of behaviour. 

So were there other factors, for example was there an unexpected change, was something different, what were the sensory issues in the space, was there extraneous noise, was there different lighting or smell.  What was my body language as the carer or the service provider, what was I reflecting, what was being picked up, was my impatience or frustration there.  Was there movement in the room or the space, who was in the room, who was not in the room, what items were in the room, was there a lot of clutter, was something moved, removed or was something being introduced that wasn't there before.  Is there a persistent pattern here, have I noticed this before in a similar situation.

This slide talks about uneven development again, only from the point of view that it gives you a bit of a visual understanding of how uneven that development might be.  So at the top of the slide you've got the actual age of the child, which is eight, and you can see that the developmental age is averaged out at three years of age.  Their capacity in terms of their strengths, however, is beyond their age year and their expressive language is slightly lower, that means that they can talk really well but as many people said they can talk the talk but can't walk the walk quite often.

Receptive language is that capacity for processing, and this is where the struggle happens.  You can take in information, children can often repeat it quite well, but processing it and storing and retrieving that information is made difficult and complicated even further if there's a memory difficulty.  So in terms of their learning ability, reading may be pitched at as a five year old but comprehension as you can see is much reduced.

On this slide what you can see down the left-hand side are some of the more typical characteristic that you will experience if you're caring for a child with an FASD.  And what that list tells us is how to create some strategies which are in the column on the right-hand side.  So they are very commonly strong visual learners but their information processing is much slower, they need a lot of external support, they have difficulty organising their day.  They are a concrete thinker; they have social skills outwardly but have difficulty with relationships, like the capacity to read social cues for example.  And that's complicated as well by their developmental delay, which means that in terms of their peer group they don't always relate well.  They have difficulty transitioning and sequencing.  And down the side I've just put a list of possible things to think about, this is just a small part of what's available on our website.  And of course structure and routine is right up the top because that seems to be the strategy that most of the carers that we have contact with talk about as critically important.  And of course the next one is the consideration of their developmental age.  The use of picture sentences to sequence events seems to be very helpful so a visual sentence which might depict for example their personal hygiene routine in the morning.  Single instructions, so if they don't seem to be able to follow it means that you need to break your instruction down even further into much more simple parts and re-teach, re-teach, re-teach.

Children with FASD often respond really well to working quietly in a workspace that has a visual barrier so that it's helpful for them to filter out extraneous sensory stimuli but not to be blocked off, it's not a punishment, it is actually an accommodation that works very well for some children.  And of course ongoing supervision is critical and that's going to be a huge issue as we progress into the future because this condition has a lifespan and how that's going to be managed is one of the concerns often raised by carers who worry about what's going to happen to the children once they transition from care.

 In terms of nutrition, what's found often is that children need perhaps to snack more often and a local school that I've been involved with has certainly provided a fruit basket and invites the children, the whole class every hour to have a piece of fruit and a drink of water which I think is a great socially inclusive way to ensure that the child in question is getting the nutrition that they need.  Prepare with back up for unexpected change and in that same school where they're really conscious of FASD is that the child in question goes every day to the classroom next door to do an activity with a buddy, in a buddy system so that if the teacher's absent from school it's not such a difficult transition for the child.  A paper chain for example can help with managing time and transition so that they are actually engaged in taking one of those chains off the paper chain every five minutes or whatever is decided.  And simple games with simple rules and marked out space on the table, floor or a desk. 

This is a really quick overview of the functional neurobehavioural assessment tool that was developed by FASCETS and the reason I've included it in is that it gives you a bit of a glimpse of how you can go about developing some strategies or accommodation.  In the first column you've got a task or expectation and I've used quite simple ones here I think, is take turns in play which is something that we teach all children.  To be able to achieve that task though the brain has to be age-appropriate and understand and apply rules and you could break that brain functioning down into many, many, many more parts. 

The primary symptoms of an FA-NB approach tell us that this child who is as you can see up the top aged eight but developmentally functioning as a four year old, has dysmaturity which is what that means, memory impairment and difficulty reading social cues.  The developmental age on this particular task has been plotted at three and the secondary behaviours that we would see ordinarily with a three year old who is being required to take turns at a game that is designed for an eight year old is temper tantrums.  The strength we understand about this child is the willingness to please. 

So the strategies ask us to think about is the game appropriate for the developmental age of the child, could se use a photo of a previous occasion when this child was playing that game as a memory prompt of what they need to do next.  Or does it require parental participation, does it mean given the developmental age and the task or expectation that the parent may have to actually join in that game.  With the transition one, the brain has to have cognitive flexibility.  By that what's meant is that if you're expecting a child to transition from one activity to another, or say to finish what they're doing to get in the car to go to school, it requires cognitive flexibility - they have to have that adaptability and of course abstraction is difficult.  So understanding that they've got five minutes left before the drive to school happens is not something that comes easily to some children with an FASD.  And it's complicated by the slow processing pace, the perseverate nature which may be present for some children which is a fixation, like the need to absolutely complete every task on this level the parent has assessed the developmental age of the child as two so he's quite young, and based on that again what we see are big temper tantrums and great resistance to moving from that activity to the next one.  But the strength we understand is a determination based on that need to finish every task.

So the strategies might include adjusting the schedule or the space of time for the activity to give time to forewarn so lots of reminders and that paper chain idea.  And finally is finishing your meal and you can read that one through.  You will see that nutrition is often - and this is the interplay that can happen here because when we would ordinarily think that a child would be hungry and finish their meal, if hunger is something that they don't recognise and they are functioning as a three year old, you may in fact have to help them eat.  Small servings, more often, separate bowls for example, or involving them in food preparation.

So in review I would ask all carers and service providers to stop fighting for change, if you've tried lots of different things and they're not working simply ask the question, what if, what if something else is going on here.  To "think younger", to give lots of time, to recognise the child, adolescent or adult's strength, to slow down your speech and use fewer words, to be much more directive, say exactly what you mean, use visual supports like hand signs, simple drawings or photographs, don't give too many choices, and re-teach and remind on a regular basis.

In summary FASD is a very complex public health issue for carers, children and the services and systems designed to support them and I hand you back to Sara.

McDOUGALL

So just very briefly in summary as Vicki has already - so FASD is a very complex public health issue, addressing the challenges faced by children and their caregivers does require a shift in thinking for the services and for the carers and everybody involved in this child's life.  And lastly caregivers need to be supported to guide the children affected by FASD and of course themselves safely through the perfect storm that is present in their lives.

WEBINAR CONCLUDED

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Slide outline: Supporting children and families affected by fetal alcohol spectrum disorders (FASD)

Slide outline

  1. Supporting children and families affected by Fetal Alcohol Spectrum Disorders (FASD)
    • Vicki Russell, Sara McLean, Stewart McDougall
    • Australian Centre for Child Protection
    • Logo - nofasd | National Organisation for Fetal Alcohol Spectrum Disorders
    • Logo - Australian Government. Australian Institute of Family Studies. Child Family Community Australia
    • Logo - University of South Australia
    • Logo - Australian Government. Department of Industry, Innovation, Science, Research and Tertiary Education.
    • Please note: The views expressed in this presentation are those of the presenters, and do not necessarily reflect those of the Australian Institute of Family Studies or the Australian Government.
    • Improving the lives of vulnerable children
  2. What are Fetal Alcohol Spectrum Disorders?
    • Alcohol has long been recognised as a teratogen- a substance that is capable of interfering with, and damaging the development of a fetus.
    • Fetal Alcohol Spectrum Disorders (FASD) are the range of physical, cognitive and/or developmental symptoms that can be caused by prenatal exposure to alcohol.
    • Often described as a hidden disability.
  3. Primary characteristics
    • Distinct facial features- but only present in a small portion of individuals with FASD
    • Other physical changes
    • Changes in brain functioning leading to difficulties in a range of cognitive domains:
      • Intellectual ability
      • Executive functioning
      • Language
      • Attention
      • Motor functioning
      • Memory and learning
      • Social cognition
      • Behavioural problemsBehavioural problems
  4. Secondary characteristics
    • Without appropriate intervention, children with FASD may be at increased risk of:
      • Disrupted schooling
      • Trouble with the law
      • Alcohol and drug problems
      • Involvement with child protection/welfare
  5. Prevalence of FASD
    • An accurate prevalence rate for FASD in Australia in not known.
    • Estimates range between 2-5% in the United States and Western Europe.
    • Suspected at risk populations include:
      • Out of home care
      • Youth offending and justice programs
  6. FASD and child protection
    • Alcohol consumption central to child protection notifications.
    • Reflects parental issues and coping, social, economic and cultural issues.
    • Represents the "perfect storm" of risk factors for placement instability for children entering care.
  7. FASD and out of home care
    • Affects significant proportion of children in care.
    • Clues: Instability and foster parent stress, persistent pattern of behaviour and resistance to conventional parenting approaches.
    • Recognition, prevention, diagnosis and responses in child protection and out of home care developing.
  8. FASD and out of home care
    • Significance of supporting foster carers in children’s lives, the critical importance of stability.
    • Important considerations in supporting foster carers. What do foster carers say on this issue?
      • Accurate history
      • Understanding and communicating, all players on same page
      • Facilitating stability
      • moving child is not the solution
      • Valued member of the team
      • Resources and knowledge
  9. FASD and out of home care
    • A recent study with foster carers (McLean & Scholten, in prep):
      • Highlighted multiple diagnoses, sensory issues, sleep issues, patchy developmental profiles, impulsivity and anxiety.
      • Importance of adjusting expectations, commitment and going along for the ride.
    • “… You know, you can’t be in the station of the rollercoaster ride and watch him ride, you’ve got to get in the car and ride with him"
  10. FASD and out of home care
    • Common understanding, collaboration with caregivers
    • "Sometimes you get teachers or professionals that don’t get it, I say to them think about how hard it is for you to like change your diet or exercise or whatever… and I say now try doing that without having the executive functioning control and you’ll see what it’s like… This guy is like a superhero, the fact that he can ever do anything."
    • "… I’m so scared of the future for her because I think if she can’t learn to control her temper, which I don’t think she’ll be able to, she’s going to be ostracised in society and end up in prison."
  11. FASD and out of home care
    • Provide a service that is more suited to ‘brain-based barriers’ to inclusion
    • "… and they wanted me to go to a parenting course, … I said I want specific strategies to manage my daughter’s behaviour. I don’t need a parenting course"
    • "… The common sense sort of parenting that we grew up with and your behavioural-based parenting, it just… it just doesn’t work"
  12. FASD and out of home care
    • Structured, modified and supervised environment.
    • "I think routine and structure; we realised quickly it was the way that she feels safest and least ‘chaoss-ed’- which is her word. Her world is chaos- its what she feels a lot of the time. That’s how she describes the feeling in her brain, just chaos ..."
    • "With these guys you have to think about, you know, with your typical children you don’t really think about the fluorescent lights or the humming of the dishwasher or those kinds of things… But with these guys, any of that, any of that kind of stuff can really just mess with their little heads."
  13. FASD and out of home care
    • Reframing behaviour – the child won’t or the child can’t?
    • "It’s hard to remember when you’re in the midst of all of this going on that the reason they’re acting this way is because of the damage that’s been done… It’s not because they’re maliciously wanting to knock your brains out."
    • "You know I just stopped, stood back and looked at her, saying, you know, 'What am I not giving you? What are you not getting?'"
  14. FASD and out of home care
    • Skills need to be taught explicitly.
    • When you plant a lettuce, if it does not grow well you do not blame the lettuce. Thich Nhat Hahn
  15. The logic
    • Behaviours are usually the only symptoms
    • FA/NB is an invisible physical disability with behavioral symptoms
    • Therefore: recognize and provide accommodations, the same as for any other physical condition
  16. Primary characteristics
    • Developmental level of functioning
    • Sensory systems
    • Nutrition
    • Language and communication
    • Processing pace: How fast the brain works
    • Learning and memory
    • Abstract thinking
    • Executive functioning
    • Strengths
  17. Strengths
    • Creative
    • Artistic
    • Musical
    • Mechanical
    • Athletic
    • Hard-working
    • Determined
    • Persistent
    • Willing
  18. Secondary characteristics
    • Secondary defensive behaviors develop over time when there is a “poor fit” between individual and environment
    • Defensive behaviors are normal reactions to pain and are preventable. Adapted from: Ann Streissguth, 1996
  19. Paradigm: A way of seeing
    Paradigm shift: Seeing differently

    I get it… she has the disability.
    We have to do the changing.

    Source: Parent of child with FASD

  20. Principles of the Fetal Alcohol/Neurobehavioural approach
    1. Can’t rather than won’t
    2. Developmental age is considered rather than chronological age – shifts our expectations
    3. Realistic expectations and environmental and social accommodations/strategies
  21. Observations
    • What do I notice/did notice in the environment:
      • What did I see? What happened just before?
      • Were there other factors - e.g. unexpected change?
      • Sensory - extraneous noise, lighting, smell
      • What was my body language?
      • Movement
      • People present/not present
      • Items in the room – clutter, moved, removed or new
      • Is there a persistent pattern – have I noticed this before?
  22. Uneven development
    • Graphic representing:
      • Actual age of person---------------8
      • Developmental age-----3
      • Strengths (art, sports)------------------------12
      • Expressive language---------------7
      • Receptive language----3
      • Reading ---------------------------5
      • Comprehension ------3
  23. Untitled graphic representing:
    • Left side list
      • Visual learner
      • Information processing is slower
      • Needs external support
      • Difficulty organising
      • Concrete thinker
      • Social skills
      • Transition
      • Sequencing
    • Right side list
      • Structure and routine
      • Consider developmental age
      • Use picture sentences to sequence events
      • Single instructions/re-teach
      • Work quietly – create a workspace in the same room but with a barrier
      • Ongoing supervision
      • Snack more often
      • Prepare with back up for unexpected change
      • Time – a paper chain for changing activities
      • Simple games with simple rules
      • Marked out space – table, floor, desk
  24. Application: Functional Neurobehavioral Assessment [FASCETS©]
    Setting:   Primary school   Age:   8   Developmental age:   4  
    • Table representing:
      • Set 1:
        • Task or expectation = Take turns in play
        • Brain has to = Be age appropriate. Understand and apply rules
        • Primary symptoms FA/NB = Dysmaturity. Memory impairment. Read social clues.
        • Devel. Age (estimate) = 3
        • Secondary behaviours = Temper tantrums
        • Strengths = Willing to please
        • Strategies = Is the game appropriate given developmental age?  Photo of the previous occasion.  Does it require parental participation?
      • Set 2:
        • Task or expectation = Transition
        • Brain has to = Cognitive flexibility
        • Primary symptoms FA/NB = Slow processing pace. Perseverative. Needs to finish tasks.
        • Devel. Age (estimate) = 2
        • Secondary behaviours = Big temper tantrums, resistance
        • Strengths = Determined
        • Strategies = Adjust schedule and space of activity.  Give time to finish, forewarn.  Use paper chain for time.
      • Set 3:
        • Task or expectation = Finish your meal. 
        • Brain has to = Connect stages of daily routine.
        • Primary symptoms FA/NB = Hunger not recognised. Disconnect eating with school or sleep to follow.
        • Devel. Age (estimate) = 3
        • Secondary behaviours = Confusion, frustration, shut down, tears.
        • Strengths = Helpful
        • Strategies = Small servings, more often.  Separate bowls.  Help to eat.  Involve in food preparation.
  25. Review strategies
    • Stop fighting for change. Ask: What if?
    • Think younger
    • Give time
    • Recognize strengths
    • Slow down speech – use less words
    • Be directive, say what you mean
    • Use visual supports – hand signs, simple drawings or photographs
    • Don’t give too many choices
    • Re-teach, remind on a regular basis
  26. Summary
    • FASD is a very complex public health issue for carers, children and the services and systems designed to support them.
    • Addressing the challenges faced by children and their caregivers requires a shift in thinking
    • Caregivers need to be supported to guide the children affected by FASD- and themselves- safely through the perfect storm in their lives

This webinar was held on 10 December 2014.

Fetal alcohol spectrum disorders (FASD) is an umbrella term used to cover the range of possible birth defects and developmental issues caused by prenatal exposure to alcohol.

In this webinar, Vicki Russell, Sara McLean and Stewart McDougall described some of the adverse consequences of FASD on children’s development, and outlined effective approaches to support children and families affected by fetal alcohol spectrum disorders.

While FASD can be found in any population, its impact can be especially significant for children placed in out-of-home or kinship care. The presentation therefore addressed the additional challenges of supporting children with FASD living in these circumstances.

The webinar built upon a related CFCA paper and practice guide:

Please take a moment to read our Webinar Frequently Asked Questions.

Image: Amelia's Sunset Swing by Donnie Rae Jones, CC BY 2.0.

About the presenters

Vicki Russell

Vicki Russell is CEO of the National Organisation for Fetal Alcohol Spectrum Disorders.

Sara McLean

Dr Sara McLean is a registered Psychologist and Research Fellow at the Australian Centre for Child Protection. She has worked in the area of child and adolescent mental health since 1997 and has a particular interest in developing effective supports for children in care. Sara has expertise regarding the psychological issues associated with Fetal Alcohol Spectrum Disorder (FASD), and the mental health and behavioural needs of children living in foster and residential care. Sara was recently awarded the inaugural ACU Linacre Fellowship at Oxford University in recognition of her work supporting children in care.

Stewart McDougall

Stewart McDougall is part of the research team at the Australian Centre for Child Protection.