Goldsmiths College, University of London
Department of PACE
Exploring strategies developed by parents to support their adopted children
with Foetal Alcohol Spectrum Disorder
Laurence Dumont
Dissertation submitted as a course requirement of the MA in Social Work,
Goldsmiths, University of London
September 2011
1
Acknowledgements
I would like to express my appreciation and gratitude to all participants for
giving their time to contribute to this research, and also for their warm and welcoming
attitude.
2
Abstract
The purpose of this paper was to explore strategies developed by adoptive
parents to support their children with Foetal Alcohol Syndrome Disorder (FASD). The
literature review considered how prenatal exposure to alcohol affected foetal
development, and how it manifested in the child and young person’s behaviour,
cognition, educational achievement, and ability to integrate into society. This research
was a qualitative project using semi-structured interviews; a total of nine participants
took part in the research project.
The analysis of the interviews revealed that adoptive parents faced similar
struggles in regards to keeping their children safe and obtaining adequate educational
provisions. All participants mentioned the importance of routine, consistency, and
repetition. Participants expressed frustration and, at times, anger with professionals
(e.g., Social Care, agencies of health and education) as adoptive parents were
confronted by a lack of awareness and understanding of FASD, as well as a disbelief of
their experiences and dismissal of their knowledge and expertise as adoptive parents in
regards to their children’s condition.
3
Table of contents
I. INTRODUCTION ........................................................................................................................................................6
II. LITERATURE REVIEW ...............................................................................................................................................9
A. FOETAL ALCOHOL SPECTRUM DISORDER .................................................................................................................................. 9
B. ADOPTION AND ATTACHMENT .............................................................................................................................................. 12
C. PARENTING CHILDREN WITH FOETAL ALCOHOL SPECTRUM DISORDER ........................................................................................... 14
1. Routine and consistency ............................................................................................................................................... 15
2. Managing behaviour .................................................................................................................................................... 16
3. Learning strategies ....................................................................................................................................................... 17
4. Socialisation.................................................................................................................................................................. 18
5. Support for parents....................................................................................................................................................... 18
D. SUMMARY ....................................................................................................................................................................... 20
III. METHODOLOGY ................................................................................................................................................... 21
A. DESIGN ........................................................................................................................................................................... 21
1. Procedure and participants .......................................................................................................................................... 22
2. Structure of the interview ............................................................................................................................................. 23
3. Participants and context ............................................................................................................................................... 23
4. Sampling ....................................................................................................................................................................... 25
5. Data collection .............................................................................................................................................................. 25
6. Ethics ............................................................................................................................................................................ 25
B. MEASURES ....................................................................................................................................................................... 26
1. Interview structure ....................................................................................................................................................... 26
C. DATA ANALYSIS .................................................................................................................................................................. 27
1. Interpretative Phenomenological Analysis ................................................................................................................... 27
2. The research process .................................................................................................................................................... 29
3. Reliability and validity .................................................................................................................................................. 29
D. SUMMARY ....................................................................................................................................................................... 30
IV. RESULTS AND DISCUSSION ................................................................................................................................... 31
A. ROUTINE, CONSISTENCY, AND BOUNDARIES............................................................................................................................. 31
B. COMMUNICATION ............................................................................................................................................................. 32
1. Discrepancy between expressive and receptive language ............................................................................................ 32
2. Concrete communication .............................................................................................................................................. 33
3. Use of short sentences .................................................................................................................................................. 34
C. MANAGING BEHAVIOUR...................................................................................................................................................... 35
1. Gap between chronological and cognitive age ............................................................................................................ 35
2. No sense of danger ....................................................................................................................................................... 36
3. Immediate consequences to behaviour ....................................................................................................................... 37
4. Inability to foresee consequences to actions ................................................................................................................ 37
5. Managing meltdowns................................................................................................................................................... 38
6. Sensory factors ............................................................................................................................................................. 39
D. LEARNING STRATEGIES ........................................................................................................................................................ 40
1. “Small bites” ................................................................................................................................................................. 40
2. Schooling ...................................................................................................................................................................... 41
3. Short-term memory problems ...................................................................................................................................... 41
4. Contextual understanding ............................................................................................................................................ 43
5. Consistency ................................................................................................................................................................... 43
6. One-on-one support ..................................................................................................................................................... 44
E. SOCIALISATION .................................................................................................................................................................. 45
1. Small-group and structured activities ........................................................................................................................... 46
2. Play ............................................................................................................................................................................... 47
3. Planning ahead ............................................................................................................................................................. 47
F. SUPPORT FOR PARENTS ........................................................................................................................................................ 48
G. ENGAGING WITH PROFESSIONALS ......................................................................................................................................... 49
4
H. SUMMARY ....................................................................................................................................................................... 50
V. CONCLUSION ......................................................................................................................................................... 51
VI. REFERENCES ........................................................................................................................................................ 53
A. ELECTRONIC SOURCES ........................................................................................................................................................ 57
VII. APPENDIX ............................................................................................................................................................ 61
A. INTERVIEW TEMPLATE ........................................................................................................................................................ 61
I.
Introduction
Foetal Alcohol Spectrum Disorder (FASD) is an umbrella term for a diagnosis related to
prenatal exposure to alcohol. There is no definitive information regarding any safe
amount of alcohol consumption during pregnancy; alcohol consumed by the pregnant
woman crosses the placenta and reaches the foetus. Alcohol exposure in the womb can
lead to various levels of brain damage and physical defects with varying degrees of
severity along the whole spectrum (FASD Trust).
Children with FASD often come into contact with Social Care services, as
substance abuse/misuse on the part of their parents can lead to child protection concerns
and children being placed in the care of local authorities, being fostered, or being
adopted. Furthermore, as children with FASD can experience learning difficulties and
behavioural issues, statutory services often become involved with the children’s special
educational needs.
This research project focuses on strategies developed by adoptive parents;
interviewing biological parents could open up a number of sensitive and complex issues
linked to substance abuse/misuse. However, adoption itself presented a number of issues
that could be confounded with FASD.
This research project was influenced by my experience in working with young
people with special needs, and specifically with FASD, at various points in my career
and in different professional capacities. I developed a particular interest in
understanding this complex condition that presented with many challenges while
working closely with young people with FASD. The MA in Social Work dissertation
offered a framework within which I could undertake further research and develop my
understanding of FASD. As a practitioner, I particularly struggled with developing
strategies to support young people with FASD, their carers, and their families. The aim
of the research is to help improve my understanding of FASD as a Social Work
practitioner, and to be able to provide better support to parents, carers, and young people
with FASD.
There are two common approaches towards disability: the medical and the
social models. The former implies specialist knowledge of a condition and an approach
that both focuses on the identified problem and tries to resolve or cure it; the condition
or disability takes precedence. The latter puts the subject back in its context and views
the disability as a result of society’s lack of adaptation to the person, rather than the
other way around; the social model of disability looks at the environment and how it
affects a person (e.g., as a disabling environment). According to Swain et al. (1993),
from a social model perspective disabling barriers could be structural, environmental,
and/or attitudinal. This can be compared to the medical model, which considers how a
disability impacts a person without taking into account the role of the environment in
contributing to the disablement of the person (Oliver and Sapey 2006; Oliver 1991).
First, the literature review considers FASD from a medical point of view to
explore the effect of alcohol on the foetus. Following is a brief consideration of the
effect of adoption on children’s attachment within the context of FASD. The last part
considers the literature on strategies developed by parents, carers, and teachers of
children with FASD.
Second, the methodology section sets out how the research is organised, how
the interviews were structured, and how the data was analysed. A total of nine
participants were interviewed.
Finally, the analysis of the data collected during the interviews is presented
and related to the literature review. The findings of the research project are linked to
Social Work practice in the conclusion.
II.
Literature review
The literature review is divided into two parts. Firstly, it is important to comprehend the
effect that alcohol, a teratogene, has on the foetus’s developing brain in order to
understand the abilities that children with FASD could build on. Expecting children to
perform tasks that they could not do due to a biological impairment would be highly
destructive for their self-esteem, and would be counter-productive. The second part
looks at the literature on attachment and adoption in the context of children with FASD.
The third part reviews the literature on parenting strategies and support developed by
biological, adoptive, and foster parents of children with FASD.
A.
Foetal Alcohol Spectrum Disorder
In order to gather information on the effect of alcohol on the foetus, various web
searches were done using the search engine Google and entering “alcohol foetus,”
“fetal/foetal alcohol,” and “Fetal Alcohol Syndrome.” The spelling “fetal” yielded more
results than “foetal,” as a lot of research is undertaken in the U.S.A. and Canada, and
therefore uses American English. Most of the literature available originated from
medical studies, and some (though much less) from educational and Social Work
perspectives.
The prevalence of foetal Alcohol Syndrome (FAS) is estimated to be around 1
in 1,000 (Mukherjee 2004), and the prevalence of FASD is estimated to be 3 to 4 times
higher (Blackburn 2009). This compares with Fragile X at a prevalence of 1 in 4,425
(Song et al. 2003) and Down Syndrome at a prevalence of 1 in 1,000 (Down’s
Syndrome Association). However, the exact prevalence of FASD might be underestimated, as it might be under-reported and children could be diagnosed with other
conditions such as Attention Deficit Hyperactivity Disorder (ADHD) or Autistic
Spectrum Disorder (ASD) (Blackburn 2009). Prenatal alcohol exposure can lead to
learning difficulties, behavioural issues, and struggles integrating into society (Phung et
al. 2011; Pressinger 1997; Mattson et al. 2011; Olson et al. 2009).
The term Foetal Alcohol Spectrum Disorder (FASD) encompasses a range of
alcohol-related effects on the child’s development due to prenatal exposure to alcohol
(Olswang et al. 2010; Miller 2006), such as Foetal Alcohol Syndrome (FAS), Alcohol
Related Neuro-developmental Disorder (ARND), Alcohol Related Birth Defects
(ARBD), and Foetal Alcohol Effects (FAE) (NOFAS-UK 2005). The main
characteristics of children with Foetal Alcohol Syndrome (FAS) are growth deficiency,
facial anomalies, Central Nervous System (CNS) structural or functional abnormality,
neuro-cognitive difficulties, and confirmed prenatal exposure to alcohol (Olswang et al.
2010; O’Connor and Paley 2009). However, along the whole spectrum, one
characteristic is common to all FASD children: difficulty in social communication, with
varying degrees of severity (Olswang et al. 2010; Monnot et al. 2002; Miller 2006;
Mattson et al. 2011).
Furthermore, children with FASD appear to suffer from neuro-psychological
difficulties in “planning, inhibition, self-regulation, and attention and memory”
(Olswang et al. 2010: pp. 1689). Research points to the tendency of prenatal alcoholexposed children to act on their aggressive impulses, and thus to be perceived as having
conduct disorder issues (O’Connor and Paley 2009; Mattson et al. 2011). Children with
FASD experience social, behavioural, and language difficulties. They appear to
particularly struggle with interpersonal relationships (Olswang et al. 2010; Miller 2006).
One of the main challenges for FASD children is to take into account the interlocutor’s
view point and experience, and to function according to the unspoken (but assumed)
rules of social interactions. These are subtle rules that typically developing children
learn at a very young age and refine as they develop and mature into adolescence and
adulthood; however, this does not happen in the same way with children with FASD.
Moreover, research has suggested that individuals with prenatal exposure to
alcohol are more likely to suffer from poor mental health and experience difficulties in
social integration (O’Connor and Paley 2009). Interestingly, this study found that there
was a link between womb exposure to alcohol and disruptive disorders in children
independent of other factors such as genetics, drug exposure, or environment (O’Connor
and Paley 2009). It appears that children with prenatal alcohol exposure show neurocognitive deficits compared with typically developing children (O’Connor and Paley
2009; Mattson et al. 2011).
Neuro-cognitive impairments and maladaptive internal models contribute to
creating socially unacceptable behaviour and result in conduct disorder diagnoses. The
most common co-morbid diagnosis with FASD is ADHD (Burd et al. 2007). However
O’Connor and Paley (2009) suggest that it could be that children with prenatal alcohol
exposure display similar behaviours commonly associated with ADHD without meeting
the full criteria for ADHD, though they mention that research is currently not
conclusive.
The combination of permanent brain damage, cognitive function deficits, and
poor social skills renders children with FASD vulnerable by placing them at greater risk
of struggling to integrate into society and reducing their chances to reach their full
potential, and presents challenges for their meeting the five outcomes set out in the
Every Child Matters Green Paper for all children (2003) without help and support early
on and throughout their lives.
B.
Adoption and attachment
Cairns (in Hindle and Shulman 2008) explained that children who suffer from prenatal
exposure to drugs and/or alcohol might display difficulties usually associated with
children whose attachment needs were not met. Psycho-dynamic theory proposes that
children’s attachment patterns develop partly in response to their carers’ own attachment
styles (Bowlby 1979).
Bowlby (1979) developed the concept that our thoughts, feelings, and
behaviours in adult relationships are based on the mental representations of the self and
others that we developed in the context of the child-primary carer relationship. Bowlby
calls these mental representations that act as a sort of relationship template, “internal
working models.” Internal working models represent the individual’s expectations
regarding the self, others, and the relationships between the self and others (Bowlby
1979; Collins 1996).
Adopted children have experienced a disruption in their life stories: they are
likely to have spent time with their biological parents or foster carers prior to being
adopted. Biological parents are able to hold in their minds their children’s stories from
pregnancy to the present, whereas adoptive parents do not hold the complete story of
their adopted children. There is always something unknown—a time when the child
belonged with some other mother or family. This unknown aspect will have formed part
of the children’s identities and may have left them with a feeling of discontinuity in
their ‘going on being’ and otherness (Winnicott 1965; Hindle and Shulman 2008).
Prior to moving into an adoptive family, children may have developed certain
expectations (internal working models) from carers and subsequently tended to
reproduce or re-enact their experience with their first carers with their adoptive parents.
This happens at an unconscious level, and the children are not aware of assigning the
roles once held by their original family or carers to the new people in their lives. They
are the ghosts of the disposed—ghosts from the children’s previous experiences coming
to haunt their new relationships (Fraiberg et al. 1975).
Children re-enacting their pasts may have evoked in their current carers
similar reactions to those of their first carers, and this could lead to the adoptive parents
displaying similar attitudes and behaviours towards their adopted children as the
biological parents (Delaney 2006; Collins 1996). Children and adoptive parents may
thus participate in (and act out) scenari from the children’s past experiences with the
children’s first care givers. However, the repetition of the relationship with the first care
givers is not therapeutic and does not lead to a catharsis, understanding, or working
through of the children’s negative and harmful early experiences.
The children’s transference of their past experiences onto their new
relationships with their adoptive parents might often remain at an unconscious level and
does not operate within the containing therapeutic alliance between a therapist and a
patient. Furthermore, the adoptive parents do not necessarily acknowledge and reflect
on the effect of their children’s transference or their own transference (countertransference) onto their adopted children. These relationship dynamics would need to be
spoken about and explored in order to come to some understanding and resolution.
Adopted FASD children have to develop new internal working models and
expectations of the world with a brain that has been damaged by prenatal alcohol
exposure—and therefore a brain that does not have the same plasticity and ability as a
brain not exposed to prenatal alcohol. The emotional impact of adoption and the
impairments due to FASD might overlap, thus making it difficult to discriminate
between one another and their effects on the child. However, carers have developed
strategies from their experiences of caring for children with FASD.
C.
Parenting children with Foetal Alcohol Spectrum Disorder
Jones (2004), Blackburn (2010), and two Canadian projects (VON Canada 2005; VON
Canada 2006) reported similar results regarding parenting children with FASD;
participants in the research studies were both adoptive and biological parents.
The Victorian Order of Nurses (VON) Canada’s 2005 research project was a
four-year project funded by the Public Health Agency of Canada and reported parentdriven guidelines from the experiences of people caring for, and working with, children
and adults with FASD.
The Victorian Order of Nurses (VON) Canada’s 2006 research project was
conducted between September 2003 and January 2004, and 17 parents were
interviewed. The Canadian research report (VON Canada 2006) focused on parents’
parenting practices in order to establish guidelines for families of children with FASD.
Four areas were of particular interest: routine and consistency, managing behaviour,
learning strategies, and socialisation.
FAS Aware UK, a charity that raises awareness of FASD in the United
Kingdom, published a series of booklets on strategies to help children with FASD (FAS
Aware UK 2007), understanding FASD (FAS Aware UK 2003), and educational
implications for children with FASD (Cunnigham 2009).
1.
Routine and consistency
Parents explained that routine and consistency within the home environment were
essential to supporting their children and overall family life, as children with FASD
often found transitions and learning new behaviours challenging. Verbal, visual, and
auditory warnings before changing activities helped prepare the child for transitioning
from one activity to another. Repetition, supported by visual cues such as picture cards
and reminders of the day’s routine, also appeared to be beneficial, as children with
FASD tended to forget what was learned the previous day.
Parents explained that their children could not generalise
one routine and apply it in another similar context. For instance, a FASD child could
learn to cross the street she lives on safely, but could not cross another street safely. As a
result, parents taught their children routines in different environments, locations, and
situations. Parents reported that their children learned best by doing, and that it was
beneficial to break down tasks into simple steps.
Parents pointed to the importance of structure both at home and while in the
community; knowing their daily routine, with clear limits and reasonable expectations,
as well as rehearsing social contacts prior to outings, helped children with FASD to
manage situations better.
2.
Managing behaviour
Jones (2004) and Phung et al. (2011) explained that children with FASD’s perceived
anti-social behaviour was due to their impulsiveness, poor social skills, inability to read
social cues, and poor tolerance for frustration. Children with FASD’s behaviour was not
perceived as being the result of their disability, but as wilful bad behaviour, and this led
communities to withdraw their support. The lack of community support put families
under further pressure to advocate and protect their children with FASD (Jones 2004;
VON Canada 2006; Phung et al. 2011).
Regarding managing their child’s behaviour, parents commented that
managing the environment was often better than trying to change their child’s behaviour
(VON Canada 2006; FAS Aware UK 2007). Parents pointed out that their children’s
developmental and emotional age was often different from their biological age, and
parents needed to bear that gap in mind. Parents advised that rewards and positive
reinforcements needed to be immediate and specific to the situation (VON Canada
2006; FAS Aware UK 2007). Children benefited from being given a task they could
accomplish regularly, and thus serve as a role model for that specific task.
Communication needed to be kept simple, concrete, and to the point (FAS Aware UK
2007); parents advised using six-word sentences and concrete language. They also
reported children benefitting from having their own space to calm down in.
3.
Learning strategies
According to Jones (2004) and Phung et al. (2011), the lack of community provision in
the form of specialised schools and leisure activity groups placed children with FASD at
risk of being pushed towards the margins of the community and of becoming more
vulnerable to negative community influences. FASD children struggled (and often
failed) to integrate into more positive community activities.
Parents explained that children with FASD think and learn differently than
other children. Children with FASD benefited from attending specialised schools where
the days and lessons were more structured, and the teachers had some understanding of
FASD (Blackburn 2010). Parents advised breaking down tasks into simple steps,
focusing on one task at a time, and allowing children to repeat them as many times as
necessary. Repetition was seen as crucial by parents (VON Canada 2005; VON Canada
2006; Jones 2004).
Families mentioned the lack of community support as being a major factor in
not feeling able to continue caring for their children with FASD (Jones 2004). The lack
of community support was perceived by families as being more stressful than managing
children with FASD within the foster family setting. Jones (2004) and Blackburn (2010)
suggested that social skills development programs, one-on-one support in schools, and
the creation of mentors to support children in participating in community leisure
activities would benefit children with FASD and their families, as well as the
community.
4.
Socialisation
Regarding socialisation, parents felt that supporting their children in making and
keeping friends was their greatest difficulty. Parents expressed that supervision by
themselves or someone else who was aware of FASD helped in facilitating social
interactions; however, that became more difficult to achieve as the children grew up.
Parents found that role playing social situations and using social stories helped children
prepare and learn more socially appropriate behaviours (Jones 2004; VON Canada
2006; FAS Aware UK 2007). Parents also felt that it was important for their teenage
children especially to be able to name all the body parts and to explain them in terms of
the idea of privacy. Parents expressed the importance of supervising access to the
internet, as well as phone contacts. Parents also explained that small group activities
were better suited for their children.
Jones (2004) found that there were two main factors involved in providing
better outcomes for children with FASD: first, the child’s temperament and ability to
bond with her foster family; second, the lack of early intervention and community
support.
5.
Support for parents
Brown et al. (2005) described the need for foster parents and their children
with FASD to have social support in the form of friends and extended family to speak
to, as well as inclusive activities for their children. Parents felt the need for activities
where they would not be judged by others as bad parents, and where their children’s
behaviour would be understood as stemming from their disability (Brown et al. 2005).
Parents found that meeting other parents of children with FASD was very
supportive, as they could share their experiences with others who understood exactly
what they were going through. Parents mentioned that working with professionals who
had an understanding of FASD led to better support for their children. Parents expressed
the need to have material support such as respite care for their children with FASD, and
also financial help in meeting the extra costs involved in raising a child with a disability.
Foster parents wished to be considered full members of a team working
around their children with FASD, rather than as “clients” themselves. Parents wanted
their knowledge and skills to be recognised and respected by other professionals.
Parents mentioned the importance of having behaviour management skills, as well as an
understanding of the child’s past and FASD.
Finally a major concern from parents was the future life of their children as
they became adults and were unable to live safely and independently, as well as their
children’s lives once they as parents were no longer able to look after them or have
passed away.
In studies regarding parenting children with disabilities, and specifically
children with FASD (Brown et al. 2008), parents expressed feeling happy and rewarded
by their children’s achievements and by their role in facilitating their children’s
development by providing support, advocacy, consistency, and structure. Literature on
parents of children with disabilities reported their sense of personal fulfilment, their
sense of purpose, their appreciation of life, and a changed focus of their priorities
(Brown et al. 2008).
D.
Summary
The literature review brought to light the complexity of Foetal Alcohol
Syndrome Disorder in its various aspects. Children with FASD have particular needs
and impairments linked to the consequences of prenatal exposure to alcohol; they
require special education provision and particular strategies to support them in
achieving and integrating into society. Communities’ support of the carers appears to
play a crucial role, but was not always available, which left carers worrying about their
children’s future.
III.
Methodology
This project was based on qualitative research that explores adoptive parents’
experiences with parenting children with FASD. The project focused on discovering the
strategies that parents had developed and found helpful in supporting their children in
managing their behaviour and improving their chances to achieve their potential, as well
as on giving me tools to support carers and children with FASD as a social work
practitioner.
The research focused on adoptive parents, as talking to biological parents
could open up a number of difficult, sensitive, and complex issues linked to substance
misuse. However, adoption itself presented a number of issues that could be confounded
with FASD.
A.
Design
Semi-structured interviews were carried out with adoptive parents in order to obtain an
in-depth understanding of the parents’ experiences, as well as to explore what strategies
and ideas parents had developed while caring for their children with FASD.
The research was particularly focused on exploring what strategies and
methods parents had put into place in order to support their children. The aim was to
learn from adoptive parents’ experiences in terms of strategies that had worked with
their children, and then to use this knowledge to enrich my social work practice and to
improve the support I could offer to young people with FASD and their families, so that
children and young people with FASD could benefit from the best possible support to
achieve the five outcomes outlined in Every Child Matters (2003).
1.
Procedure and participants
The literature review and my own experience working with young people with FASD
allowed me to gain some understanding of this spectrum.
In order to contact adoptive parents of children with FASD, I contacted two
organisations. One was based in London, so I could attend one of the monthly meetings
held for families on May 15, 2011. I presented my research project and left my contact
details with the person who created the organisation. I contacted this person again a few
weeks later, and she had just sent out letters to the parents in the network asking them to
participate in a similar study that was being undertaken by a psychiatrist;
understandably, the contributions of the parents involved in the first organisation would
be dedicated elsewhere.
I contacted a second organisation in June and explained my research project.
There were several positive responses within a few hours, and an amazing willingness
to help FASD become better known and understood by professionals through the
cooperation of adoptive parents of children with FASD. Through the second
organisation I interviewed participants A, B, C, D, and E in July 2011, and participants
F, G, H, and I in August 2011. A total of nine participants were interviewed.
2.
Structure of the interview
Rubin (2005) advised to organise an interview into three different parts. The first should
start with easy opening questions in order to allow the interviewee to relax. Then the
interviewer could move on to the heart of the matter, which might be more difficult for
the interviewee as it might require expressing personal views and opinions on delicate
topics, or talking about significant personal experiences. Finally, the third part is meant
to calm the emotional experience and come back to easier topics. It is also a time when
the interviewer could give the interviewee the space to express any critiques or point out
anything that the interviewer missed.
3.
Participants and context
Participant A was a woman who had adopted two children with FAS; she had
separated from her husband after the adoptions. The children were two girls aged 6 and
7 years old at the time of the interview. The children were adopted at the ages of 13
months for the elder, and 5 months for the younger child.
Participants B and C were a couple, both long-term foster carers with more
than 30 years’ experience fostering children. Two children with FASD were placed with
them, and later on they were adopted by the couple. At the time of the interview, their
adopted daughter and son were 23 and 22 years old, respectively. The young woman
was removed at birth from her biological mother and placed with the adoptive couple.
She was diagnosed with FAS shortly afterwards. The young man came to the couple
when he was almost 6 years old. It was known that his mother had consumed alcohol
during pregnancy, although he was diagnosed with FAS only later on as a result of his
adoptive parents’ struggle to obtain a diagnosis. Participants B and C were interviewed
together and took turns in answering my questions, often bouncing replies or comments
back and forth.
Participants D and E were a couple who had adopted their son when he was 7
months old. At the time of the interview, their son was 16 years old and had been
diagnosed with Autistic Spectrum Disorder and Attention Deficit Hyperactivity
Disorder. However, the diagnostic letter stated that the Autism was due to prenatal
alcohol causing damage to the pre-frontal cortex. Participants D and E were interviewed
together, and often added to one another’s comments or asked one another for more
details.
Participant F and her husband, Participant G, had adopted three children with
FASD; at the time of the interview, their eldest daughter was 15 years old, the middle
one was 9 years old, and the youngest one was 7 years old. The two younger children
had been removed from their biological mother at birth and placed with their adoptive
parents at 13 months; the eldest child was placed at 5 years. The eldest was formally
adopted at 6 years, the middle one at 18 months, and the youngest one at 3 years due to
complications with the adoption process on the part of Social Services.
Participant H adopted her granddaughter, who was 11 years old at the time of
the interview, and who had been diagnosed with Foetal Alcohol Effect (FAE).
Participant I and her husband (not interviewed) adopted three siblings with
FASD: two daughters and a son who were 15 years old (daughter), 11 years old (son),
and 10 years old (daughter). The children had spent some time with their birth family.
The eldest was placed with the adoptive parents at 9 years old and was adopted at 11
years old; the middle daughter was placed at 5 years old and was adopted at 7 years old;
and the son was placed at 3 years old and adopted at 5 years old.
Some of the children adopted by the participants in this study had suffered
severe neglect and/or abuse prior to their being adopted by their current carers.
4.
Sampling
I contacted adoptive parents of children with FASD via an organisation that raises
awareness about FASD. This organisation was able to put me in contact with
participants in different geographic areas in England.
5.
Data collection
I met the participants at their homes or in cafes to interview them. The interviews were
tape recorded and then transcribed verbatim.
6.
Ethics
The interviews were made anonymous when transcribed so that the participants’
identities and personal details would remain confidential.
Participants were informed before giving their consent to be interviewed that
the researcher hoped to tape record the interview, and that it would be made anonymous.
At the time of the interview, participants were asked again for their authorisation to
record the interview.
Participants were told that the interviews would be used for a Masters degree
dissertation in Social Work at Goldsmiths College, University of London. All
participants gave their consent for the information to be used for the researcher’s
dissertation.
I offered to share the results of my research with all participants.
B.
Measures
1.
Interview structure
The interview was divided into three parts totalling eight questions; the questions
moved from demographic details to parenting strategies and support, and terminated by
asking participants to give advice for professionals working with children with FASD.
Questions 1 and 2 were about the child’s name and age. Question 3 was about
who was living at home with the child, and was meant to give me an idea of the
environment in which the child was living, as well as who the important people in the
child’s life were. Question 4 was concerned with the circumstances of the adoption; it
explored how the child had become a part of the adoptive family.
Questions 5 and 6 addressed the strategies that the adoptive parents had
developed to raise their child with FASD, and what factors had helped them in this task
(extended family, professionals, etc.). Question 5 had four “memory jotters” to remind
the researcher of the important aspects that needed to be covered in all interviews.
Question 7 gave participants the opportunity to say what advice they would
like to give to professionals (e.g., Social Workers, teachers, medical staff, etc.) who
work with children with FASD. Finally, question 8 was open-ended and asked
participants if they wished to add anything else.
C.
Data analysis
1.
Interpretative Phenomenological Analysis
The interviews were organised and analysed according to the Interpretative
Phenomenological Analysis (IPA) approach. The researcher chose to use IPA because it
was particularly suited to the qualitative aspect of the research, as well as to the
researcher’s epistemological position.
Interpretative phenomenological analysis stems from the phenomenological
approach and, in a few words, states that a subject is a person within a context
(Langdridge 2007). Therefore, there is no absolute separation between object and
subject as in Cartesian terms. In phenomenological epistemology, there is a constant
exchange and relation between subject and object (Giorgi and Giorgi in Smith 2003).
In terms of researcher and participant, this implied the need to be aware that
the data was produced and constructed as the result of an interaction between the
researcher and the participants. The relationship between the researcher and the
participants was influenced by the internal and external worlds of both the researcher
and the participants. Each interview was the result of an interaction between participants
and researcher; the discourse of all actors (participants and researcher) was influenced
by each actor’s internal world, with its phantasies and past experiences.
Both the researcher and the participants were the subject and object of
projections and introjections of ideas and feelings, and there were unconscious
expectations and fears at play (Giorgi and Giorgi in Smith 2003). Therefore, it was
important for the researcher to be aware of these feelings during and after the interview,
as they were part of the data, as well as the verbal account, of the participant. The
interview was a product of conscious and unconscious inter-subjective dynamics, as
well as a social context.
The researcher needed to be aware of the notions of recognition and
containment, as well as transference and counter-transference, during the interview
process. However, it was during the data analysis that these dynamics often came to
light.
Moreover, according to Smith (2004), IPA has three characteristic features:
idiographic, inductive, and interrogative. The idiographic aspect is related to the
detailed analysis of each interview or piece of data, and draws themes and then moves
on to the next one. There are two levels of understanding: the themes common to all or
some participants, and the specific story of one and each participant.
The inductive characteristic reflected the position of the researcher, who did
not have a determined hypothesis that needed to be proven right or wrong. The
openness to data allowed the researcher to explore the participants’ experiences and
discourse. However, while there was a mixture of inductive and deductive practices
during the research, the inductive approach remained the main approach.
2.
The research process
The author looked for different themes raised by participants within each participant’s
interview and across all interviews. The interviews were read one by one, and the
material was sorted according to the questions it answered, as well as the themes it
evoked. NVivo 8 software was used to code the interview transcripts and to organise the
different themes found in each interview.
Every interview was first analysed separately in order to keep the coherence of
the participants’ discourse in mind. This allowed the researcher to piece together
material that was dispersed throughout different parts of the interview, and to become
aware of themes appearing in the data.
Once every interview was analysed, the researcher brought together the
various analyses and looked at their common traits as well as differences. This gave a
bigger picture of participants’ parenting strategies beyond their individual experiences.
3.
Reliability and validity
In order to test the reliability and validity of the interview analysis, the researcher asked
two PhD students (co-raters) to read one interview each, and then compared the themes
found by the PhD students to the themes found by the researcher. The themes found by
the co-raters were consistent with those found by the author.
D.
Summary
This research was a qualitative project that used semi-structured interviews to explore
the strategies developed by nine adoptive parents of children with FASD to support their
children in achieving their potential. The results of the data analysis are presented in the
following section.
IV.
Results and discussion
A total of nine people participated and contributed to this research project by taking part
in the interviews. The findings were overall consistent with the literature. For ease of
reading, adoptive parents were referred to simply as “parents,” and their adopted
children with FASD simply as “their children”. There is no mention below of children
who do not have FASD.
A.
Routine, consistency, and boundaries
All participants stated that routines and consistency were important key factors in their
daily life. This extended to maintaining some routine on weekends and during holidays
so that the children would know what was coming next and thus feel more secure,
which was consistent with VON Canada (2006) and Jones’s (2004) findings.
Participant A explained that it was important to keep to the succession of
events so that the children would understand what was expected of them:
‘Yes, I mean you do routine and it’s all got to be routine, no matter
whether they are going to bed a bit later or whatever, as long as you
stick to the routine…’
Furthermore, participant F confirmed the need for routine and consistency:
‘Firm routines really. And never changing them between the days off
school or school... They need consistency more than anything, don't
they?’
Rules also needed to be applied in a consistent manner, as children could not
manage differences in context. For instance, participant A gave the example of her
children playing outside their house: they knew they were not allowed to go off the
grass in order to keep them away from the road; she applied the same rule when they
were in a public park, for an exception would have confused them.
The daily routines included many reminders of what to do next, such as
shower first, then brush the teeth and shave, and then dress. Using the same words to
mean the same action (e.g., “brush your teeth”) meant that the children would not get
confused by the introduction of another word or expression.
B.
Communication
1.
Discrepancy between expressive and receptive language
Some participants mentioned the gap between their children’s expressive and receptive
language. Three participants (A, G, and H) reported that their children could display a
use of language above their chronological age, in that they were able to use quite
complex vocabulary; however, their understanding of the language (including the one
they were producing), was far below their chronological age.
All participants reported that the discrepancy between the production of
(expression) and understanding of (reception) language created confusion and
misunderstanding in social and educational contexts. Participant H explained that her
child appeared much more able than she actually was at school, and hence was taught to
(and expected to) perform at a different level than she possibly could achieve, for the
Head Teacher had decided to teach her at the level she appeared to be.
2.
Concrete communication
All participants mentioned that communication needed to be concrete, in that sentences
needed to be kept short and to the point. Concrete communication implied not using
idioms, figures of speech, humour, or irony, as their children would not understand the
meaning and take it literally.
As participant A stated, “If you said ‘lay the table,’ they would lay on it.”
Participant H gave another example:
‘It’s like [Child’s name], if you tell her you’re “pulling her leg,” she’ll
look down and say, “Well you’re not touching my leg!” It’s a
nightmare when they haven’t got a sense of humour... You can tell her
it’s a story, somebody has written it, they’ve made it up. No, it’s real.
It’s literal. Literal. You cannot get through to her at all. Tell her
werewolves are out there, she thinks there is a werewolf at the bottom
of our garden; she won’t go down there. We walk down there with her
and say, “Where is it? Show me.” “It's there, why can't you see it?”
As though you’ve got something wrong with you, you think it’s not
there. They are so literal and that causes a problem as well, like you
try and get them in a paddling pool in the garden and it’s like having a
warm bath, they go to school and say, “Mum has made them have a
bath in the garden.” And I get reported. They are just so literal. I had
that with [Child's name] with the mental health unit, she told them
they slept with my brother, her uncle. Because he was sat in the same
room while she had a sleep.’
Participants’ experiences illustrated and corroborated similar findings in the
literature review (Olswang et al. 2010; Monnot et al. 2002; Miller 2006; Mattson et al.
2011). Children with FASD’s literal understanding of language, coupled with a good
level of expressive language and a lower level of receptive language, adds up to create
confusion, miscommunication, and misunderstanding between children with FASD and
their interlocutors.
3.
Use of short sentences
All parents mentioned that communication needed to be kept short, for the child would
not be able to remember information contained in long sentences, but would only
process the first or last words. For instance, as participant H explained: “One
instruction at a time... One simple instruction.... No can’t even do two.” So short
sentences, possibly supported by visual clues and repeated as necessary, were conducive
of better understanding between parent and child.
As participant F explained:
‘It’s like you must never say to my kids “don’t run” because they’ll
run, they hear ‘run’ the last word, if you say walk. The whole of your
words have to change, you have to think logically... We say walk...’
Participants and the literature (Jones 2004; Mattson et al. 2011) both describe
children’s short memory problems and receptive language deficiency, and explained the
necessity of keeping verbal communication to a level that children with FASD could
manage. Children with FASD appeared to benefit from short sentences that expressed
what they needed to do, rather than what they should not do.
C.
Managing behaviour
All participants explained that their children’s behaviour stemmed from their syndrome,
and people working with them needed to understand how the syndrome manifested in a
particular child, as each one was differently affected. Participants’ feedback was
congruent with the findings of VON Canada (2006), Jones (2004), Phung et al. (2011)
and Olswang (2010).
1.
Gap between chronological and cognitive age
The most important aspect mentioned by all parents was the gap between their
children’s chronological age and their cognitive development. Children often were
several years younger in their cognitive and emotional development than their
biological age, as was also mentioned in the literature (O’Connor and Paley 2009;
Mattson et al. 2011). For instance, a child’s chronological age could be 15 years old, but
the child could have the cognitive aptitude of a 7-year-old. This gap created great
difficulties in the community and at school, as the children did not behave in expected
and socially acceptable ways, often displaying behaviour that might have been expected
of a toddle whilst they were in their early teens. As participant F phrased it:
‘No she doesn’t get that. She can't use the common sense
interpretation of ‘you're 14, you don’t show your knickers to anybody
[laughter] and everybody,’ she doesn’t understand.’
A much younger child undressing in front of strangers would not be perceived
as being unacceptable; it often happens in holiday resorts or on the beach. However, a
young person with FASD would not necessarily perceive the difference between her
physical and cognitive development, and thus potentially put herself at risk.
2.
No sense of danger
Children required constant supervision, as they often had no sense of risk and danger
and were unable to foresee the consequences of their actions. As participant H
explained:
‘…they don’t understand danger… She’ll turn the cooker on. If you
tell her it will burn, she’ll try it. …Yeah she’ll actually burn her
fingers and you say well she’ll scream and cry and you say “that hurt
so you don’t do it again” but they don’t learn. She will actually try it
again to see if she gets the same reaction as that it’s a nightmare.’
All participants mentioned that their children lacked awareness of any
potential danger or risk to themselves or to others. Parents explained that they needed to
supervise their children at all times, and this was also in line with the results of previous
studies (Jones 2004; Von Canada 2006).
3.
Immediate consequences to behaviour
All participants explained that consequences to their children’s behaviour needed to be
immediate, otherwise they will have forgotten what happened and therefore would not
understand the reason for being rewarded or sanctioned. Participant H explained in
relation to school:
‘If she does anything wrong, she has started retaliating other children
when they pick on her she’ll start to hit back now, she gets the
punishment, ... but they don’t do the punishment there and then it’s the
next day. We've said to them “no you don’t do that, if you're going to
do a punishment it’s there and then, you don’t wait until the next day
because she doesn’t know what she’s done wrong.’
This aspect of behaviour management was similar to other researches’ findings
(VON Canada 2006; FAS Aware UK 2007).
4.
Inability to foresee consequences to actions
All participants stated that their children could not deduce the consequences of their
current actions; there was an inability to see farther than here and now.
In the following example, participant F explained that her adolescent daughter
could not predict that a toddler would not be able to move away from her when she was
riding her bike and thus she would have to take action to avoid the toddler:
‘…my grandson was in the way, he was 18 months, 2 at the time and
[Child's name] ran over, he was an ambulance job, got a nasty head
injury, ran him right over, knocked him over and all she kept saying
was “you shouldn’t have been in the way,” she couldn’t go round him
“it’s his fault, he was in my way.” “But he’s a baby,” “he was in my
way,” and she can't for the life of her even now see that she should
have gone ’round him or braked, it's his fault, he’s a baby.’
This inability to foresee immediate consequences also affected the children’s
own safety. As participant F explained:
‘Now when I say to [Child's name] “she’ll get run over,” “well I’ll
push the car back,” “you can't because you’ll be dead, you’ll be
splattered,” “they won’t get me I'm fast”… it might sound horrible to
say but [Child's name] would be dead if it wasn’t for us, she could be
dead every day, you cannot take your eyes off her for a second, you
cannot and she would dead.’
As all participants stated, children with FASD required constant supervision in
order to keep them and others safe.
5.
Managing meltdowns
All participants reported that their children had outbursts of anger; the best way to
manage them appeared to be the ability to recognise the triggers and consequently avoid
or minimise exposure to such triggers. However, as participant H shared:
‘Nothing really works, it’s trial and error, basically. …if she’s in a bad
mood it’s the door slam and you just have to leave her then to get out
of it and eventually she’ll calm herself down enough to come down
and say “sorry” even though she doesn’t know what she’s done and
why she’s done it. She really doesn’t understand feelings or anything.’
Participants explained that they tried managing the immediate environment so
that their children were not unnecessarily over-exposed to stimuli leading to outbursts,
which was again congruent with findings in the literature (VON Canada 2006).
6.
Sensory factors
Most parents talked about their children’s hyper- or hypo-sensitivity to various sensory
stimuli such as light, touch, temperature, and sound. At home this could be managed, for
instance, by keeping the child’s bedroom and the house free of unnecessary stimuli, and
by paying attention to the type of light used, the colour schemes, and the material for
clothing and furniture. Bedroom windows were often fitted with blackout blinds so that
the light would not wake up the child.
Another important aspect was diet, which played an important part in helping
children with FASD manage throughout the day. Parents had to ensure that their
children were eating enough food, and often this needed to be coordinated with the
child’s school or college whenever possible.
Sleeping was another factor that some parents brought up. Some remarked that
it was particularly difficult to wake up their children in the morning, and others
explained that their children were very light sleepers and would easily wake up.
D.
Learning strategies
All parents commented that they had a difficult time with their children’s education, as
there was clearly a lack of understanding and knowledge of FASD on the part of
professionals involved with their children’s education. Parents had to try to explain how
the disorder manifested and that their children could learn, but needed additional
support and different strategies.
1.
“Small bites”
One couple (participants B and C) who home schooled two of their children explained
that they had to adjust their teaching to the children’s short attention spans and their
need for movement. They would break the lessons into “small bites” (participant B) of
around 20 minutes, and then allow for 20 to 30 minutes of physical activity—either
kicking a ball or doing some manual work.
Participant A expressed that a lack of motivation was not the issue, but
rather it was a cognitive problem:
‘Although she might be doing a task that’s interesting, you’ve still got
to remind her what she is doing every few minutes because her
attention span is just not there and she will go out.’
All participants stressed that, with the right adjustments, their children with
FASD could learn and achieve. According to participants’ experiences, it appeared that
children with FASD needed and benefited from one-on-one support and small groups.
2.
Schooling
Parents often faced a difficult time in obtaining support from schools, not only
regarding academic matters, but also with social aspects such as break times and meal
times. Parents found that it was difficult for teaching staff to grasp the extent of FASD’s
impact on their child’s behaviour. For instance, one parent (participant B) recounted that
his son used to go into other classrooms and disturb them, and teachers believed he did
it out of mischief. However, he explained that his son could not remember which
classroom he had to go to or had come from, but could not admit it to his teachers. A lot
of the behaviour that was perceived as ‘bad behaviour’ actually stemmed from the
young person’s inability to process and to retain the necessary information.
Furthermore, it came to light that a very difficult aspect of teaching children
with FASD was that what they had learned one day might be forgotten the following
day. This was often interpreted as a lack of will to study, but really it was an inability to
retrieve information. All participants mentioned that their children needed to be taught
constantly and could forget quickly, which was in line with the literature (VON Canada
2006; Jones 2004; Olswang et al. 2010; Mattson et al. 2011).
3.
Short-term memory problems
All participants said that their children experienced difficulties remembering simple
commands or sets of items such as the days of the week. This had implications on the
children’s learning patterns. As participant A explained, in reference to a Physical
Education activity involving a succession of tasks to be completed in a predefined
order:
‘I remember last year, she got so far, and then the last two things... but
because everyone had already gone she got there and she was like and
I am sat there I am just thinking you poor thing, she was like a startled
rabbit, what do I do? …but there are still a lot of times where it’s that
last bit when everyone’s gone and she is still ‘What am I meant to do
now?’ because it’s too much for her to take in.’
Participants B and C reported similar issues with their daughter and son, who
were performing at a regional level in their respective sports. Participants B and C
explained that their children could not be the first in line to start an activity, as they
would not know what to do; however, if they could watch a couple of other young
people, they would be able to replicate the sequence of movements and to demonstrate a
high level of competence. It appeared that they could cognitively process immediate
actions, but that any delay resulted in the loss of information, as they could not retrieve
it.
Short-term memory issues were mentioned by all participants in one form or
another. For instance, as participant F explained:
‘...I think it’s because they can probably just about remember three
things and then they pause and forget. [Child's name] can't remember,
if you give her three instructions she is stuffed, but after learning from
rote she can get to three.’
Short-term memory problems were also cited in the literature (Mattson et al.
2011; VON Canada 2006), which partly explains why children with FASD struggle in
the traditional education system (Cunningham 2009; Miller 2006).
4.
Contextual understanding
All participants noted that their children could not transfer information from one context
to a different, yet similar, one. As participant A stated:
‘...if you teach them to cross the road safely in one part of the village
they wouldn’t transfer it to a different part of the village.’
This was again consistent with the literature (VON Canada 2006; Jones 2004)
in regards to children with FASD’s inability to generalise one learnt routine and apply it
to a similar context.
5.
Consistency
All participants agreed that their children benefited greatly from a consistent approach
and clear communication; however, it appeared that for participants, their experiences of
the education provision varied greatly, from very poor to excellent, depending on the
willingness of professionals to learn about FASD and to adjust their techniques and the
school environment.
Some aspects of schooling were not in the best interests of the children’s need
for consistency, as participant F remarked:
‘And I did for her last review a chart, she had 29 different teachers in
one year. Change of subject, change of room, change of teacher,
change of everything, every lesson.’
This might well be beyond the teacher’s (or even the school’s) control, given the
financial constraints they might face; however, it did not work towards supporting
children with FASD in achieving in education or in fulfilling their potential as
recommended in Every Child Matters (2003).
6.
One-on-one support
Most participants expressed their disappointment and, at times, anger with their Local
Educational Authority as the amount of support recommended by their children’s
Statements of Special Educational Needs was not provided. Most of the children’s
statements stated that the children should receive one-on-one support in class; however
none of the children in compulsory education received that level of support. This had a
detrimental effect on the children’s educational experience, as participant H stated:
‘She can't understand the concept of why she has to be at school
because she’s not learning anything as far as she’s concerned, she’s
learned what she needs to learn that’s it.’
Participants’ experience and the literature (Cunningham 2009; Jones 2004; Miller 2006)
showed that an adequate level of support, which often was one-on-one, allowed children
with FASD to learn and develop important skills.
Participants faced structural and environmental barriers to their children’s
learning. There were no special educational provisions for children with FASD, thus
children were placed in mainstream schools or specialist schools for children with ASD.
Furthermore, according to participants, children were often not provided with the
support they were entitled to according to their statements of Special Educational
Needs. Hence, children with FASD had to learn in an environment that was not
providing for their particular needs, and that was putting them at a disadvantage
compared with children who could thrive in the school environment without additional
support.
In other words, this was a form of discrimination against children with FASD,
as the necessary adjustments or recommended support set out in their statements of
Special Educational Needs were not provided.
E.
Socialisation
Parents mentioned the difficulties encountered by their children as they grew up
physically, but developed slower in terms of emotionality. As they aged, they related
better to younger children; as they become young men and women, their affinity with
younger children could put them in a vulnerable position in the community, as their
syndrome was not a visible one. In participant D’s words:
‘Yeah. Now what happens when he’s 25, and he gets involved with
young girls of 13, 14 and 15? Then he would become a paedophile.’
Parents very often used the term “invisible disability” or “not in your face
disability” to refer to FASD. As their children grew older, the physical aspects of their
FASD tended to disappear; their expressive language was a few years ahead of their
receptive language, and their cognitive development was not synchronised with their
physical appearance; all these factors contributed to a community that was not aware of
FASD and that ultimately misunderstood children and young people with FASD.
All parents worried that ill-intentioned people could easily take advantage of
their children, and sexual exploitation and use for criminal activities were concerns
mentioned by most parents.
1.
Small-group and structured activities
Parents reported that their children often fared better in small groups, as there were
fewer stimuli to process. Structure played an important role, as structured activities such
as Beavers and Army Cadets (participants D and E) appeared to offer the consistency
and reassuring structure that children with FASD needed in order to cope with a group
situation. As participants D and E explained, their child could get on with what he had
to do if everybody was doing so. If one person was being disruptive then their child
could not ignore it, as he could not filter out the other’s sounds or movements and thus
could not keep his focus on task.
In a similar vein, children did better in activities when they had specific tasks
to complete in a prescribed order, or when they could imitate the person next to them.
Participants B and C gave the example of their son and daughter who were excellent in
football and gymnastics, respectively. Their trainers understood their needs and made
sure they were either in the middle or at the end of the line so that they could copy what
their peers had done before their turn came. Succeeding in their chosen sport
contributed to building their self-esteem, and consequently had a positive effect on their
lives.
2.
Play
All participants explained that their children did not know how to play with toys; they
tried to show them, but it did not work. Participant I stated, “They don’t know how to
play with toys.” Participants F and G mentioned that their youngest daughter would take
her toys out of the box and line them up in a straight line, but not actually play with
them.
The apparent inability to play could be linked to the children’s literal
understanding and reflect a specific cognitive impairment.
3.
Planning ahead
All participants expressed that going out in the community required planning ahead so
that they had ways of occupying their children. Participant A explained:
‘It’s just having the foresight, that you’ve got to plan so if we are
going out for a meal, make sure we have got something with them if
they want to play outside but obviously I have to be with them all the
time.’
Participant A explained that during car journeys she made sure her children
had their favourite CD to listen to, as well as drinks and snacks to keep them going. She
also mentioned that her daughters had no notion of time, so could not work out when
they were due to arrive at their destination.
F.
Support for parents
Most parents reported that the support they received was from either their partner or
spouse, or from close family members such as a mother or siblings. However, all
explained that they could not leave their children with friends (parents’friends). There
were different reasons for that. Some parents explained that their children might not be
able to understand that they were not abandoning them, and thought that this was due to
attachment issues in their adopted children. Some parents pointed out that their friends
would not know how to (or not be able to) manage their children, as their syndrome was
quite complex and their behaviour could be quite out of the ordinary.
Parents said they did not find ready support from professionals, whether they
turned to teachers, nurses, general practitioners, or paediatricians. Most parents
expressed that they felt they had to fight for their children’s diagnosis and for
professionals to learn about FASD. This will be discussed in detail in the following
section.
G.
Engaging with professionals
The most consistent feedback from parents regarded a lack of understanding and
awareness of FASD. Most parents stated that they had to explain to professionals what
FASD was, and that they were not always believed. Participants D, F, H, and I
expressed that they were told by different professionals in the education and health
sectors that there was nothing wrong with their children, and that they were making it
all up. This led to parents explaining that they were often blamed for their children’s
‘bad’ behaviour as it was perceived as being due to poor parenting.
Parents consistently felt that the education system was inadequate and that
they had to fight for their children to obtain a statement of Special Educational Needs;
however, the statement requirements that they did finally obtain were not always met by
the schools. For instance, one child was supposed to receive one-on-one support, but
was only supported by one learning assistant for six students. There was also a lack of
provision for children with FASD’s sensory needs, and a lack of awareness about their
learning difficulties such as forgetting what was known two days earlier.
At the time of the research, there was no specific specialty school in the UK to
cater to the specific needs of children with FASD in the same way there were schools
for children diagnosed with, for instance, ASD.
Most participants expressed a lot of anger and disappointment at the
education, social care, and health authorities for the lack of provision and support for
their children, as well as for the lack of awareness of how FASD impacts the life of their
children and their families. Most participants expressed that it had been a continuous
fight against education, social care, and health services to obtain some level of service
necessary to meet their children’s needs.
H.
Summary
Overall, adoptive parents felt unsupported by professionals due to various factors, such
as a lack of understanding of the complexities of FASD and the way it affected their
children, and a lack of adequate and specific resources to meet their children’s needs.
However, adoptive parents managed to develop strategies and maintain routines to
support their children in achieving education and moving on in life at their own pace.
V.
Conclusion
FASD is a complex syndrome affecting the way children think, express themselves,
communicate, behave, and perceive the world they live in. Participants often qualified
FASD as an “invisible disability,” meaning that it was not evident or visible to those in
contact with their children. However, it was clear from participants’ experiences that
there was not enough support in the community to help them in their caring roles. FASD
is a life-long condition, and the responsibility of caring for these children and future
adults rests on the whole community and society, not solely on their carers.
There are implications for Social Work practice and education to improve the
future of children with FASD. Listening to adoptive parents about their experiences
with social care services, it appeared that there was a great lack of awareness about
FASD. There is consequently a need to develop awareness, understanding, and
knowledge about FASD and how it affects children and young people.
Social Work, education, justice, and health practitioners need to be trained in
order to be able to carry out informed assessments and develop skills to recognise and
meet the needs of children with FASD and their carers. Foster carers/adoptive parents
should also be trained in caring for children with FASD and meeting their highly
complex needs. Specific provisions such as respite and leisure activities with people
who can understand and support children with FASD should be developed. This would
give children and young people with FASD the same opportunities to join safe leisure
activities (tailored to their specific needs) as other children.
Specialty schools similar to those available to children with ASD would need
to be created in order to respond to the educational and social needs of children with
FASD. There were no schools in the UK specifically meant for children with FASD at
the time of writing this paper. Furthermore, as children grow into adults with FASD,
their high needs continue to be present; they are very vulnerable adults in need of
protection from abuse and exploitation. They also need further education, training, and
employment opportunities.
From a societal point of view, with a ‘binge drinking’ culture developing, it
appears that there is some urgency to develop an awareness and understanding of FASD
within the wider community. Prenatal exposure to alcohol and its detrimental effects on
the foetus are not a part of common knowledge to the same degree that the negative
effects of smoking are in terms of health. However, the teratogenic effect of alcohol on
cells is non-treatable, and thus becomes a life-long condition, namely FASD.
FASD is 100% preventable. A governmental campaign on the scale of, say,
campaigns to prevent child abuse (NSPCC), drug misuse (Talk to Frank), and diabetes
(NHS) would be required to develop both women and men’s awareness of the dangers
of drinking during pregnancy. In the same way that we are made aware of safe sex, we
should be made aware of safe pregnancy for the foetus. Finally, there is a need for
public policy aimed at the prevention, intervention, treatment, and support of women,
children, and families affected by alcohol abuse.
VI.
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VII. Appendix
A.
Interview template
1) What is your child’s name?
2) How old is he/she?
3) What are your family circumstances? (Who is at home?)
4) How did your adopted child come to live in the family?
5) What has life been like with your adopted child?
a) Did you know the child had FASD before adopting her/him?
b) When did you notice something was different about the child, if anything was different?
c) How do you think FASD impacts or manifests in the child (behaviour, social skills,
learning, etc.)?
d) What, if anything, in your experience has helped the child manage situations that she/he
might find difficult?
6) What, if anything, have you found has supported you as a carer?
7) What advice would you give to professionals working with families and children with
FASD?
8) Anything else you would like to add?