Abstract
‘Caring for a child or young person with foetal alcohol spectrum disorders (FASD) is very challenging’ is a statement commonly heard by the parents/carers involved. But why is it so challenging? What are the specific challenges? How does this sentence relate to the family-finding team, to panel considerations, to training for foster carers, to the selection of adopters and to care planning? This article seeks to address some of these issues from the viewpoint of the author’s experience of parenting two children with FASD and also as the Chief Executive of the FASD Trust, a national charity supporting affected children and their families/carers in the UK.
Diagnosing a child with FASD
The first and biggest challenge for this group of children and young people is the failure of many professionals and UK society to recognise their disability. As reflected in the title of this special edition, we deliberately called our book on parenting these children, Parenting a Child with an
These children often look ‘normal’. Not all those affected by FASD have the diagnostic facial features associated with pre-natal alcohol exposure. Some have slight features that are not necessarily instantly discernible, especially to the untrained eye. However, absence of apparent physical differences and facial features does not mean an absence of disability. Although some affected children have learning difficulties, others are very verbal with good, expressive language. They may have a reading ability above their actual age and an IQ within the normal range.
One agency carried out a study of the mental health needs of children on a concurrent planning programme (Coram, 2012). The children had been removed at birth and placed with carers who were approved to foster and then adopt them should the courts rule that they were unable to return to their birth families. These babies had suffered no trauma, abuse or neglect and remained in the same placement. Several of them were fractious, irritable infants, difficult to soothe and to establish feeding patterns for ‒ all the ‘classic’ symptoms of a child exposed prenatally to alcohol or drugs.
One family we supported through our work at the FASD Trust was sympathetically told by school that they fully understood that their adopted child’s behaviour was due to trauma and neglect in early life. The school were somewhat taken aback when they were informed that the child had lived with the adopters since being discharged from hospital at the age of three weeks and that the emotional and behavioural problems they were seeing were not the result of neglectful experiences but of a disability called FASD (Oldham Support Group, 2014).
Lack of information
The second issue that families face is a lack of documentation about exposure to alcohol. Social workers often fail to document alcohol misuse and to inform substitute carers of the risk that the child will be affected. FASD is a ‘spectrum’ with varying degrees of severity and the difficulties will not be apparent in a baby or toddler. Most children present with problems at around the age of six but others can be teenagers before the full extent of their difficulties becomes apparent.
This lack of documentation leads to the next challenge faced by many substitute carers: obtaining an accurate diagnosis for the child in their care. There is a tendency to document drug misuse and to be concerned about women taking drugs during pregnancy. Drugs are illegal and therefore deemed ‘more dangerous’ than alcohol, which being legal is regarded erroneously as ‘safe’. From a medical perspective, neither drugs nor alcohol should be consumed during pregnancy but alcohol has the greater potential to cause harm to the developing foetus. Drugs and alcohol go together like fish and chips; an individual’s journey into drug misuse will invariably involve alcohol as well. There are no UK figures on how many children on child protection registers or placed for adoption, or in other permanent placements outside the birth family, have a family history involving the excessive consumption of alcohol.
Lack of support
Another consequence of failing to recognise alcohol misuse in the mother is that she will not be offered any help and may well go on to have further children. If she continues to drink, each subsequent child will be more affected than the previous one; her first born will be the least affected and her youngest the most affected by FASD, with each successive child in between being sequentially further along the severity scale of the spectrum. The needs of each new child will therefore increase and with it the demands upon the substitute carer. Furthermore, in the absence of diagnosis there is a tendency to place siblings together. In the FASD Trust we are aware of three, four and even five siblings placed in the same adoptive family.
The medical research literature is quite clear: there is a direct correlation between maternal age and level of disability (Durkin, et al., 2008; Grether, et al., 2009; Saha, et al., 2009; Tsuchiya, et al., 2008). The older the mother, the more likely it is that the child will be affected by FASD. We also know that FASD is dose related ‒ the more alcohol a child is exposed to in utero the more likely they are to be affected and the more severe their disability. In addition, as time passes, the mother needs to consume greater quantities of alcohol in order to achieve the same ‘fix’.
The burden on carers
It is important that family-finders do not overburden permanent substitute carers, who are already under enormous pressure. This will only lead to placement disruption or carers literally hanging in there by the skin of their teeth. The capacity of carers’ ability to fully appreciate and truly cope with the reality of the demands of a sibling group with FASD must be thoroughly explored before placement and before they are offered another sibling. Potential adopters and long-term foster carers must have a clear understanding of FASD, its impact on the child’s development and the reality of life with these endearing but very demanding children.
The ‘blame game’
Another of the common misconceptions we encounter through our work at the FASD Trust, and a major challenge faced by many affected by FASD, is the ‘blame game’ of the undiagnosed child. This takes many forms. The placement is thought to be at fault and so the child is moved. The social worker is thought to be at fault and another one assigned to the case. The school is thought to be wrong for the child and the school is changed. In the worst-case scenario, the children themselves are ‘blamed’ and labelled as ‘oppositional defiant’ and eventually ‘unable to be placed in a family’.
The perils of misdiagnosis
Social work practice over the last 15 to 20 years has been dominated by attachment theory. In our experience in the FASD Trust, the inappropriate use of this theory has led to many carers feeling isolated, guilty and incorrectly labelled as over-anxious, inadequate parents. The children then become increasingly confused and unhappy as inappropriate interventions and therapies are offered for an unrecognised disability. The reality is that these children are not disobedient and defiant but disabled. Whoever they are and wherever they live, whoever cares for them, whoever is their social worker or teacher, the child will display these behaviours as symptoms of their disability.
Recognising and diagnosing FASD early will save the local authority, and the taxpayer in general, considerable sums of money and enables the funding available to be spent more effectively ‒ an increasingly salient issue in these times of budget constraints. More importantly, it opens the way for these children and young people to achieve emotionally, behaviourally and academically their potential, leading to placements that are not disrupted but stable.
The work of Professor Ann Streissguth from the University of Washington, who carried out research on a large cohort over a period of many years, clearly demonstrates the link between age of diagnosis and appropriate support in relation to outcomes for the FASD affected individual as an adult, showing a direct correlation between early diagnosis and better adult outcomes (Streissguth, et al., 1997).
Historically, those caring for children with FASD have endured tortuous diagnostic journeys and multiple, usually ineffective interventions. At long last, more of the medical community in the UK are recognising and understanding the condition. However, the challenge of ensuring an appropriate support package for the child and their carers after diagnosis remains.
Accessing the right support
So, once we have recognised and diagnosed FASD, what support do those affected and their carers need? How can we spend our increasingly limited financial resources wisely and ensure the best outcomes? What are the day-to-day challenges faced by those caring for children with FASD? How do we ensure that placements do not break down?
The first common hurdle is the belief that this is a condition that can be fixed, something the child will grow out of, or that all will be well once a loving, stable home has been found. But FASD is a lifelong but not a life-shortening disability. There is no cure or fix. It is a condition that needs to be managed, or as the Canadians put it, the children and their families need ‘strategies not solutions’ (Alberta Children's Services, Jones and Cunningham, 2004).
Children and young people affected by FASD desperately require stability and permanence, as many of the strategies to help them and the lifelong support networks they will need take time to establish. The support will need to be readjusted as the child grows and their requirements change. Multiple placement moves must be avoided at all costs and permanency, in whatever legal framework is appropriate, sought as swiftly as possible.
One of the biggest hindrances to these children and young people receiving appropriate support is the faulty expectations of the adults around them. A key finding from much of the US research has been that having a primary caregiver who understands FASD and advocates appropriately for the right interventions constitutes a major factor towards positive outcomes in adulthood (O'Connor, et al., 2006; Riley, et al., 2011).
Adopters dreaming of the type of normal family life experienced by their friends need to be fully prepared, so that they truly understand the challenges of parenting a child with FASD. All foster carers need relevant training as a significant percentage of the children they will care for, both now and in the future, are likely to be affected. Social workers and panel members must appreciate the complexity and lifelong nature of FASD to enable them to make informed decisions and offer appropriate long-term support to these children and their substitute carers. Very few local authorities currently offer adequate training to these groups, tending to play down the multifaceted nature of the condition.
When assessing prospective adopters or other long-term substitute carers for children with FASD, consideration must be given to the strength and diversity of their wider support networks. The key question is, ‘How will they support you in parenting a child with a permanent disability?’ There is a significant difference between a child who has been traumatised or abused, and for whom love, stability and appropriate professional therapy will make significant changes so that she or he can move forwards, hopefully to experience an independent and successful adult life, and the child affected by FASD. These children have a permanent disability which is not ‘curable’, and will require support and ‘parenting’ for many years, or even their whole lifetime. We have met grandparents unwilling even to babysit the FASD child because they are so challenging, but who are more than happy to care for their other typically developing grandchildren.
One of the major practical issues faced by the carers of children with FASD is having sufficient physical energy to manage the daily practical requirements of looking after them. Younger children especially are often diagnosed with ADHD. Their activity and energy levels are high; they seem to crave movement and struggle to sit still and focus on a task, unless it is a favourite TV programme or activity in which they become wholly absorbed. Many have sleeping difficulties, exacerbated by their previous inconsistent, chaotic lifestyles and early trauma. They can have frequent nightmares. In the early years, their immune system is poor, leaving a perpetual round of illness and time off school and work to manage.
Caring for those affected by FASD is physically and emotionally demanding. Walking, talking, toilet training, all the major early milestones are often achieved late or towards the upper end of normal. In school-aged children, their ability to speak well usually masks their incapacity to understand what is said to them, and their ability to read fluently disguises their inability to comprehend what they have read. Their receptive language, their ability to understand what is being said to them, is delayed and often half their chronological age.
Pre-natal alcohol exposure affects the fine motor more than the gross motor skills, which means that children can struggle to dress themselves in the early years; buttons and zips are difficult to manage. They have problems holding a pencil and writing. They struggle with spatial awareness, which, combined with balance issues, often leads to them being labelled as clumsy and accident prone. When younger children have poor muscle tone and skeletal deformities, an assessment by a physiotherapist is recommended. Exercises and activities such as swimming or horse-riding can help. As muscle tone improves, the child will find it easier to sit still and some of their restless ‘ADHD tendencies’ will recede.
These children present challenging behaviours and they do not learn from their mistakes. So-called traditional parenting techniques have no impact or merely serve to make the situation worse. The children suffer from sensory processing and integration disorders culminating in sensory overload that manifests as tantrums or emotional eruptions. They either do not realise they are hungry, so do not eat, or do not stop eating. Occupational therapy may be of value here, recommending effective interventions for implementation in a variety of settings, including school.
There are increased possibilities that children will meet the diagnostic criteria for autism, ADHD, dyspraxia, conduct disorder or attachment disorders. The list is endless and the multiple potential diagnoses add to parents’ increasing distress. As we have seen, FASD is often said to be an invisible disability, not only because the child appears physically normal but also because some of their difficulties can be subtle or not evident, hidden by the perception that they have ability, whereas the reality is they have no capability.
Seeking appropriate interventions
This is where people caring for children affected by FASD face two other challenges: first, to ensure that others, particularly professionals, fully appreciate their child’s actual difficulties; and second, to make sure that the interventions offered are appropriate.
For example, the affected children are often extremely talkative, leading to the false assumption that this is a child who is intelligent and who does not have any speech and language problems. When properly analysed it becomes apparent that their speech is often repetitive or echolalic. A speech and language assessment can actually be useful to gauge the child’s receptive language level. Speech and language therapists can also advise and assist with social and conversation competence, taking turns and making friends ‒ skills that all children with FASD struggle to learn.
Another common intervention for the undiagnosed child, especially if she or he is or previously has been looked after and has had traumatic experiences in early life, is to offer ‘talking therapies’ to enable them to overcome their difficulties. However, the child with FASD often struggles to properly engage with the therapy; they do not understand the abstract concepts being discussed. In addition, they are being ‘talked to’ in language that is above their receptive language level; they fail to comprehend, fail to engage and fail to change. Children with FASD do not have a concept of time and so often struggle to put events into context and in a clear timeframe. Their short-term memory can be especially poor while their longer-term memory has a tendency to operate on a ‘random recall’ basis. A child may have heard someone use a phrase or sentence in a particular context, only to repeat it in the wrong circumstances. This also impacts on their ability to engage with talking therapy aimed at helping them come to terms with past events.
When therapy is unsuccessful, the family is likely to move on into the whole blame cycle: Is it the therapy, the therapist, the carers or the social worker’s fault? The fact that the child was born with untreatable brain damage and cannot process information is rarely considered as an option.
Children and young people with FASD need a multi-disciplinary support package from professionals who understand these disorders. This package needs to be reviewed regularly and adjusted over time to meet the needs of the child as she or he grows. The kind of support that is appropriate and required by a five-year-old is not necessarily the same as that suitable for a child at 11 years old. But it is also important not to overburden carers and those with FASD with multiple appointments and professionals, all giving conflicting advice. Ideally, one professional should take the lead on behalf of the child or young person and their carers.
These complex, demanding, challenging, lovable children eventually leave their primary caregivers physically and emotionally exhausted. While I understand and wholly support the requirement to look within a birth family for alternative carers when birth parents are unable to provide care, I seriously question the wisdom of placing young, very demanding children with elderly grandparents whose ability to cope will be compromised by their increasing age.
Support for life
There are also longer-term considerations to be addressed. Children affected by FASD require some degree of support for life. About one-third always will need 24-hour help or high levels of care; another third will require supported independence and a third will manage independence with occasional assistance. As a general rule, the children with FASD coming into the care system tend to be in the first two categories, mainly because they have usually been exposed to higher levels of alcohol. Alcohol damage is then combined with other in-utero stresses such as drugs, tobacco and domestic violence in pregnancy. Finally, post-birth trauma, placement moves, neglect and abuse mean that their disability is likely to be at the severe end of the spectrum. A significant number of looked after children with FASD will never be able to leave care and live independently.
Substitute carers need the resources to continue caring, even when the ‘child’ is in their 20s and 30s, yet there are virtually no services for vulnerable adults with FASD. This is not a life-limiting condition; it is permanent with a normal life expectancy. Having removed these children from birth families where, traditionally, long-term support would be provided by the family unit, surely it is incumbent upon the ‘corporate parents’ to ensure that enduring services and support are available? As so often, financial pressures tend to influence decisions that need to be taken.
Carers need respite, but most local authorities only offer it to the parents of children with severe physical difficulties. Others have a misconception that what needs to be provided is an expensive, monthly weekend package of care. The reality is that carers usually only need a few hours a week or a babysitter to enable parents to go out for an evening. These children do not cope well with change. They are inflexible in their thinking and can respond to new developments with emotional outbursts and tantrums. Parents therefore usually want someone to stay with the child in their own home. They also need consistency of respite carer. Most importantly, this temporary carer needs to understand FASD and the high level of supervision that such children require. They must be someone in whom the primary caregivers have confidence. Very few respite care services provide this type of reliable, flexible and individually tailored care, yet it could prevent a placement breakdown or adoption disruption.
Caring for the older child
Another challenge faced by those caring for teenagers, particularly in foster care, is the expectation that reaching the age of 14 or 15 will automatically lead to them being given more independence and freedom. As a general rule, these young people operate emotionally and socially at around half their chronological age. They have a poor sense of danger, poor impulse control, are easily led and naïve, and inadequate supervision or too much freedom is a recipe for disaster. Carers often find themselves described as over anxious and over protective in conflict with the teenager’s social worker. The reality is that the carers’ instincts and concerns should be taken seriously. We have known young people who have been overlooked or dismissed to go missing, to become involved with the police, to be raped and even, in one tragic case, killed.
The vulnerability of this group should never be underestimated and steps need to be taken to help young people with FASD to move towards ‘supported interdependence’. This presents huge challenges for agencies as they struggle with the complexity of enabling them to have a social life, learn life skills and live with some independence, and keeping them physically and emotionally safe.
Outcomes
Based on long-term US research and looking at the experiential evidence we have gained from the increasing number of young people with FASD now reaching adulthood in the UK, the most positive outcomes are achieved by two groups: children who were diagnosed when they were very young and who have stayed in the same supportive placement; and children who ‘know and own’ their condition (Blackburn and Whitehurst, 2010; Loock, et al., 2005; Mukherjee, et al., 2013; Streissguth, et al., 1996).
In the same way in which it is widely acknowledged that it is better to tell a child early that they are adopted, so it is easier if a child learns when they are younger that they have FASD. They need to know what the condition is and how it affects them. In this way, they become accustomed to understanding why they struggle with some issues and whom to ask for help. It eliminates a lot of confusion, frustration and fear when young adults understand why they are ‘different’ from their peers. This, in turn, impacts positively on their behaviour, self-esteem and anxiety levels.
Individuals with FASD will always have to ask someone else to help or assist them with various aspects of life. For instance, many will be unable to manage money, pay bills, take out contracts for mobile phones or have bank accounts. Like time or distance, money is an abstract concept that young people with FASD struggle to understand. Children who do not know what is wrong with them do very badly as they move into adult life. Knowledge is also a safeguarding issue, as it allows children time to learn and recognise who are the ‘safe’ or appropriate people to ask for assistance.
There used to be a perception that those with FASD were disobedient, disruptive children whom no one would foster or adopt and who in all likelihood would grow up to be alcoholic, drug-addicted criminals, ending their lives homeless, jobless and perhaps committing suicide. However, children with FASD have many positive qualities. They are often creative, both musically and artistically. They are endearing, affectionate, loving children who enjoy being involved in activities and family life. They just struggle to know how to get involved in a socially appropriate manner. They have a great deal to offer the world. A significant number of parents and carers successfully enjoy parenting those with FASD. The most successful placements are where parents have adopted or fostered with a full understanding of the condition and how it is likely to affect the child coming into their care.
FASD is a complex disability that we are only just beginning to grapple with in the UK, especially within social care. We are also starting to recognise that it disproportionately affects looked after children. In fact, it is probably a major yet largely unrecognised contributing factor to some of the poor outcomes we consistently see for young people leaving the care system in comparison to their peers.
While improvements have undoubtedly been made, it must be noted that the UK still significantly lags behind its global partners such as the USA, Canada, Australia, South Africa, both in terms of giving clear advice to pregnant women about alcohol consumption in pregnancy and recognising and diagnosing FASD.
As we finally identify and diagnose FASD more accurately, it is imperative that we seriously look at how we can support those affected to ensure far better outcomes. With its comprehensive universal social care systems, the UK has the potential to become a world leader in this area. That process will begin by all of us, both at a personal and an organisational/statutory level, ensuring that we fully understand this condition and its impact on individuals with the condition. We must also take time to reflect on our own professional practice, ensuring that we are doing our best to adapt and improve our work and the services offered to those affected.
Ultimately, these children and young people were born into a society that could not prevent them from being born with a disability but that can, at least, offer them every chance of reaching their potential and having success in life.
Footnotes
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