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Abstract

This paper focuses on issues associated with parenting and living with FASD. It is based on a larger research and video production project that examined the challenges, accomplishments and support needs of adults with FASD in relation to parenting, employment and the legal system. Using theoretical sampling techniques, in-depth, face-to-face interviews were conducted with a total of 59 people from 5 diverse communities in British Columbia; of these, 15 were adults with (suspected) FASD. Findings presented in this article relate to parents’ hopes, goals and accomplishments, parenting challenges, experiences with the child welfare system, and perceived barriers to support, including policy-related barriers. Findings also revealed prevailing ignorance about the nature of FASD and the day-to-day support needs of those living with FASD, which potentially have profound implications from both a health and a social justice perspective. For example, parents experienced reluctance to seek assistance for their secondary disabilities related to FASD (e.g., substance use or mental health problems), for fear of that their needs for support would be viewed as evidence of their parenting incapability. Highlighted will be directions for positive policy and practice-related change in working with parents with FASD. KeywordsFetal alcohol spectrum disorder-Parenting challenges-Parenting supports-Adults living with FASD
Parenting with Fetal Alcohol Spectrum Disorder
Deborah Rutman &Marilyn Van Bibber
Received: 30 May 2009 / Accepted: 23 November 2009 /
Published online: 8 January 2010
#Springer Science+Business Media, LLC 2009
Abstract This paper focuses on issues associated with parenting and living with FASD. It
is based on a larger research and video production project that examined the challenges,
accomplishments and support needs of adults with FASD in relation to parenting,
employment and the legal system. Using theoretical sampling techniques, in-depth, face-
to-face interviews were conducted with a total of 59 people from 5 diverse communities in
British Columbia; of these, 15 were adults with (suspected) FASD. Findings presented in
this article relate to parentshopes, goals and accomplishments, parenting challenges,
experiences with the child welfare system, and perceived barriers to support, including
policy-related barriers. Findings also revealed prevailing ignorance about the nature of
FASD and the day-to-day support needs of those living with FASD, which potentially have
profound implications from both a health and a social justice perspective. For example,
parents experienced reluctance to seek assistance for their secondary disabilities related to
FASD (e.g., substance use or mental health problems), for fear of that their needs for
support would be viewed as evidence of their parenting incapability. Highlighted will be
directions for positive policy and practice-related change in working with parents with
FASD.
Keywords Fetal alcohol spectrum disorder .Parenting challenges .Parenting supports .
Adults living with FASD
Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that refers to the range of
birth defects and neuro-developmental disabilities resulting from prenatal exposure to
alcohol. Several diagnostic terms are encompassed by FASD, including Fetal Alcohol
Int J Ment Health Addiction (2010) 8:351361
DOI 10.1007/s11469-009-9264-7
D. Rutman (*)
Research Initiatives for Social Change unit, School of Social Work, University of Victoria, Victoria,
British Columbia, Canada
e-mail: drutman@uvic.ca
M. Van Bibber
Qualicum Beach, British Columbia, Canada
e-mail: mvanbibber@shaw.ca
Syndrome (FAS), Fetal Alcohol Effects (FAE), Alcohol-Related Neurodevelopmental
Disability (ARND), and Alcohol-Related Birth Defects (ARBD).
There is growing consensus that FASD needs to be understood as a permanent and
invisible physical disability with behavioural symptoms (Malbin 2002). That means that
people with FASD have significant brain differences that give rise to disability because of
problems in a variety of areas, including cognition, memory, impulsivity and attention.
Because the brain disability is permanent, FASD does not get outgrown, and the above
primary effects are not cured.
At the same time, children and adults with FASD are extremely heterogeneous. There
are tremendous individual differences in peoples strengths and in the nature and degree of
peoples difficulties and thus the disabilities experienced. For this reason, understanding
each persons unique strengths, learning styles, learning difficulties and challenges, and life
experiences, is essential.
Since its initial identification as a medical entity in 1973 (Jones et al. 1973), the
preponderance of research relating to FASD has focused on the physiological and clinical
indicators of FASD, and on the effects of FASD in children. However, in 1996, Anne
Streissguth and her colleagues published groundbreaking research that conceptualized the
difference between primary disabilities and secondary effects associated with FAS, based
on longitudinal assessments of young adults with FASD. Primary effects of FASD include:
poor short term memory; speech and language disorders; poor judgement and problem
solving abilities; difficulties in relating behaviours to consequences; difficulties in
generalizing information, forming linkages, and abstract reasoning; difficulties in planning
and organization; impulsivity; and social and emotional challenges, including difficulties in
reading social cues; lack of boundaries; trouble with understanding and expressing
emotions (Burgess and Streissguth 1992; Stratton et al. 1996; Streissguth et al. 1996;
Weiner and Morse 1994).
Secondary behaviours, by contrast, were defined as difficulties that a person is not born
with, but that are linked to the primary effects of FASD. The secondary effects studied in
Streissguths research included mental health problems, alcohol and drug problems,
troubles with the law, school drop-out, employment difficulties, and dependent living
(Streissguth et al. 1996). Streissguths distinction between primary and secondary effects
suggested that secondary effects could be reduced and even prevented from occurring given
improved community and professional understanding, as well as adequate and appropriate
interventions. Parenting is an important opportunity to begin interventions that can
minimize secondary behaviours and promote coping with neurobehavioural disabilities.
In Aboriginal communities, challenges in parenting with FASD are compounded by the
effects of colonization. However, the unique strengths of Aboriginal communities are
reasons to approach parenting with FASD from a wholistic and indigenous perspective.
FASD finds its roots in the colonial history of Canada. Colonization, racism and the
deterioration of First Nation political and social institutions, the suppression of traditional
spirituality, culture and language, the apprehension of children and loss of traditional lands
and economies is the legacy of Canadas settler history (Van Bibber 1997). The residential
school system proved extremely effective in destroying cultural pride and self-identity, in
obliterating connections with traditional languages and in disrupting and severing family
relationships (Rutman et al. 2000; Tait 2003). The current health and socio-economic
conditions trace their beginnings to these historic events. What is less obvious when
addressing issues such as FASD is the rich culture that existed before colonization, a culture
so vibrant that its distinct nature lives on today. Much of the language and traditional
practices have gone with the passing of each elder; however, ceremonies, traditional
352 Int J Ment Health Addiction (2010) 8:351361
knowledge and language are alive or are being revived in many communities. First Nation
people understand that health and well-being are tightly linked to strengthening the unique
traditional knowledge and practice of the ancestors. Among these practices are traditional
parenting practices and knowledge. In view of these realities, discussions of FASD in
Aboriginal communities cannot take place in a vacuum.
Recent Canadian and international literature emphasizes the difficulties in obtaining accurate
population-based prevalence rates, and methodological flaws have been noted, in particular, in
prevalence studies involving certain populations, including Aboriginal peoples (Roberts et al.
2007). Nevertheless, the currently accepted estimated prevalence rate of FASD in North
America is 9.1 per 1000 live births (Calgary Fetal Alcohol Network 2005; Sampson et al.
1997). As such, Fetal Alcohol Spectrum Disorder is viewed as the leading known cause of
congenital brain damage in the Western World (Abel and Sokol 1987).
These estimates suggest that in Canada, there are probably over 300,000 people
currently living with FASD. Moreover, given that there are currently close to 26,000,000
people over age 15 living in Canada, it is estimated that approximately 260,000 adolescents
and adults living in Canada have FASD (Abraham 2005; Lutke and Antrobus 2004).
Chances are, a high percentage of these adults have or will have children. Thus, the number
of parents who themselves have FASD is significant.
Despite this, relatively little attention has been paid to issues in adolescence or adulthood
for people with FASD. Indeed, in view of the above statistics, the paucity of literature
focusing on the experiences and support needs of parents with FASD is noteworthy and
lamentable. At the time that our project team commenced our research, there was no
literature known to the authors that focused specifically on the parenting experiences and
issues for people who themselves had FASD. This knowledge gap is all the more
distressing given that parenting issues have been repeatedly identified as being of great
concern to adults with FASD, their support people, and service providers who work with
them (Abraham 2005; Ford et al. 2001; Rutman et al. 2002,2005).
To address this knowledge gap, our project team undertook a research and video production
project that aimed to examine the challenges, accomplishments and support needs of adults with
FASD in relation to parenting, and to identify programs, practices and policies to better address
these parentsneeds.
1
This article will share findings relating to the accomplishments,
experiences and challenges of parents living with FASD, as well as some of the approaches and
supports identified by parents with FASD as being helpful to them and their families.
2
Finally,
this paper will explore issues relating to FASD and parenting within an Aboriginal context and
perspective, including barriers faced by those living with FASD and by communities in relation
to FASD prevention, as well as positive strategies and directions for change.
Methodology
In keeping with research exploring peoples lived experiences, the project employed a
qualitative research design. The project also was informed by video ethnography as a
methodology; video ethnography involves utilizing video as a means to construct audio
visual representations of social life (Goldman-Segall 1998).
1
This study was one of three inter-related projects undertaken from by the project team; the other two
focused on employment-related issues for adults living with FASD, and on FASD and the criminal legal
system.
2
Expanded discussion of challenges associated with parenting with FASD, as well as useful parenting-
related supports and strategies is contained in Parenting with FASD (Rutman et al. 2005).
Int J Ment Health Addiction (2010) 8:351361 353
In-depth, face-to-face interviews were conducted with a total of 59 people from 5 diverse
communities in British Columbia in order to gather information for our three inter-related
projects focusing on the experiences and support needs of adults living with FASD. In
keeping with a number of qualitative methodologies, we employed theoretical (i.e.,
purposeful) sampling techniques whereby emphasis is placed on selecting appropriate,
information-rich casesfor in-depth study (Morse 1994; Sandelowski 1986).
Of the 59 people interviewed:
15 were adults with (suspected) FASD. Of these adults, 10 were Aboriginal and 5
were Caucasian
8 were support people of the adults (e.g. parents, partners)
36 were multi-disciplinary service providers/key informants (perinatal program staff,
FASD-related program staff, social workers, community support workers, adult
education educators/administrators, employers, lawyers, judges)
In keeping with other studies focusing on issues for adults living with FASD, we did not
require a diagnosis/assessment of FASD as a criterion for participation. This is because the
majority of people living with FASD have not had a formal diagnosis. To ignore those who
lack a diagnosis would be to further marginalize and dismiss the experiences of those living
with FASD. Nevertheless, the prospective participants needed to self-identify as having
FASD, and, if a support person was involved in the research, the support person needed to
confirm that the participants behaviours were consistent with FASD.
Semi-structured interviews were carried out as guided conversations about peoples lives
and experiences (Patton 1990). Interviews ranged in duration from 30 to 90 minutes and
were carried out in a location of the participants choice. In some cases, we conducted more
than one interview with a participant, to capture changes that had occurred over time in the
persons life. Finally, at the request of participants, we carried out several small group
interviews and two focus groups with service providers. Interviews were videotaped and
audiotaped, with participantsconsent.
Findings
Parenting Hopes and Goals
To provide a context for discussing participantsexperiences as parents, we begin by
sharing themes relating to participantshopes and goals for themselves as parents. Central
to participantsgoals was their desire for their children to become good people who would
have a life that was better than their own. One parent spoke very eloquently about his
parenting goals:
I dont want them to skirt on the edges of society like I did. I want them to be citizens
instead of being spectators.
A strong, related theme was participantsdesire to break the cycle. The cyclewas
conceptualized in various ways. For some, it referred to the cycle of addiction and drinking
around children; for others, it was about being abusive or neglectful toward children; for
others, it meant involvement with the foster care system; and for others, it meant not being
part of a childs life.
Its just kind of: Dont be the dad that my dad was to me.
354 Int J Ment Health Addiction (2010) 8:351361
Moreover, it was evident in participantscomments that their keen wish to break the cycle,
however defined, was motivational and for some was a strategy that they used to help stay on
track and employ positive strategies to deal with challenging situations. As one mother stated:
When I grew up, my mom and dad used to always drink around me, and I dont want
that. I want to break that cycle, and I dont want to live like that. I dont want my
kids to have to go through that. So I dont really hang around people who drink or do
drugs.
Another parent realized that she needed time for self-reflection so that she could identify
ways in which she could raise her children differently than she had been raised:
Before, I was raising them because I had to, and because my mom raised me this way,
or whatever. Im going to raise my kids because I love themand I want to raise
good people. And in order for that to happen I have to be a good person myself.
Parenting Accomplishments and Strategies
As an initial question in the qualitative interviews, participants were asked about their
parenting accomplishments, i.e., what made them feel proud of or good about their
parenting. Many participants emphasized that just having their children remain in their care,
or getting their children back into their care or custody was, for them, a significant
accomplishment. This was particularly true if the child had been removed from the parents
care or if the parents worker had questioned his or her ability to look after the child. Along
similar lines, having their children show affection and attachment, and being part of their
childrens lives, was important for some participants, and all the more so for participants
who had not had this experience in their own childhood.
Interestingly, many of the themes that emerged as accomplishments could be linked to the
daily living strategies that participants identified as being helpful to them. In other words,
participants felt a sense of accomplishment when they were able to engage in what they
understood to be positive parenting and/or a healthy lifestyle. For example, a number of
participants were extremely proud of having learned strategies to calm themselves down and
control their temper. Taking a time outto collect themselves or their emotions was both a
parenting strategy and, when practiced consistently, an accomplishment.
For parents who struggled with drug or alcohol problems, finding ways to cut back or avoid
using substances was identified as a highly significant parenting accomplishment. These
parents realized that that they came to the attention of child protection authorities in large part
because of their substance use problems. Thus, when they were able to put into place strategies
that helped them stay clean, such as steering clear of people who used drugs or alcohol, they
were also working toward achieving their parenting goals of breaking the cycle:
I mostly hang around my sister-in-law and my brother and people around here who
are sober. Its been almost 2 years, going on three, being away from drinking and
doing drugs. I feel more happy and healthy.
Other parenting accomplishments and parenting strategies that participants identified as
helping them included:
&Using memory aids such as calendars, schedules, organizers, post-it notes
&Using self-talk and other strategies to make transitions within the days activities
&Having consistency in the days schedule and activities
Int J Ment Health Addiction (2010) 8:351361 355
&Applying guidance techniques consistently, such as setting boundaries and focusing on
their childrens positive behaviours.
Incorporating several of these strategies together, one parent stated:
I write down everything, detail by detail, that needs to be done. So, we all have things
that we need to do. I never thought that making sure that their daily schedule was
written down was going to be as important to them as it was to me. I mean, they dont
have any disabilities; I do.
Parenting Challenges & Barriers
The participants in our research spoke openly about various parenting difficulties they faced, some
of which they themselves attributed to FASD. In examining the types of challenges experienced
by parents with FASD, Streissguth et al.s(1996, 1997) framework on primary and secondary
effects of FASD is a useful conceptual tool. At the same time, participants described a number
of challenges that they faced that arose from the impoverished social conditions in which they
lived, or as a result of negative societal attitudes, as well as unsupportive child welfare policies,
which hindered their efforts to access the support they needed as parents. Thus, in addition to
the primary and secondary effects of fetal alcohol, following is a brief discussion of the gamut
of challenges and barriers experienced by parents living with FASD.
Primary effects of FASD that impacted parenting included problems with: memory and
organization; perseveration; planning; generalizing from one situation to another; using
consequences effectively; understanding the concept of time; registering and integrating
sensory cues such as hunger, temperature, and pain; and temper/patience and impulsivity.
As discussed in further detail elsewhere (please see Rutman et al. 2005), the ramifications
of these primary effects of FASD can be huge, and have the potential to jeopardize the
familys health and safety if appropriate safeguards and supports are not put into place.
Yet, in addition to dealing with primary effects of FASD, most participants also
experienced a number of parenting challenges that could be conceptualized as secondary
effects of FASD. These types of parenting challenges were most often inter-connected and
included several secondary disabilities identified by Streissguth et al. (1996), as well as
secondary effects discussed by other FASD researchers and educators (Boland et al. 2002;
Lutke and Antrobus 2004; Malbin 2002), such as: alcohol and drug use/addiction; lack of
positive role models and social supports; abusive domestic relationships; transience and
homelessness; and poverty and lack of resources.
Several participants in our project struggled with addictions issues that had negative
ramifications for their parenting, such as not being there for [their] childrenand/or child
neglect. For these participants, substance use was also a very strong risk factor for other
secondary effects associated with FASD, including homelessness and involvement with the
criminal legal system. As such, participants themselves recognized that their substance use
was a significant precipitating factor in losing custody of their children.
Another strong theme in the interviews was that many of the participants never had
experienced or observed a positive role model in relation to parenting. Consequently, what
was normalto them was the unhealthy and potentially harmful parenting approaches to
which they had been exposed as children. Other participants spoke of being raised by
parents who themselves were likely affected by prenatal exposure to alcohol, and/or in
families dealing with multiple generations of addiction. For Aboriginal participants, the
devastating and multi-faceted legacies of the residential school experience robbed
356 Int J Ment Health Addiction (2010) 8:351361
generations of Aboriginal families of knowledge of culture, language and traditions,
including those related to raising children (Rutman et al. 2000). In one mothers words:
A lot of things I did wrong which I thought was right: yelling at them, being
aggressive, I learned from my parents, thinking that what they were doing is right.
A significant number of participants in this project, as well as in our previous research
with adults with FASD (Rutman et al. 2002), had experienced one or more types of abuse in
childhood, adolescence and/or adulthood. Young women in particular were vulnerable to
victimization in social and sexual relationships, and their craving to belong in a group and
be accepted, loved and taken care of heightened this vulnerability and their risk of engaging
in unhealthy or unstable relationships (Copeland and Rutman 1996). Other factors that
increase the social vulnerability of adults with FASD are their compromised judgement
(particularly in relation to assessing whether others may take advantage of them), their lack
of role models or experiences of healthy relationships, and difficulties with communication
and conflict resolution (Hume et al. 2006). In terms of their parenting, participants
struggled to navigate their own personal relationships and safety issues, while attending to
their childrens safety, attachment issues, and emotional development.
Other secondary effects of FASD that affected parenting were transience and housing
instability. Moreover, for a number of participants, grinding poverty, possibly linked to or
stemming from addiction problems, contributed to their being evicted and, in the words of
participants, to everything getting disconnectedand their bouncing around quite a bit.
For some participants, these factors became red flags that kept them in the radar of child
welfare authorities.
Challenges Associated with Societal Attitudes or Expectations
In addition to dealing with parenting challenges related to the primary and secondary effects
of FASD, participants confronted challenges associated with how FASD was viewedand
misunderstoodby society.
Being stigmatized because they had FASD was an experience voiced by most
participants. Participants were particularly distressed when workers and others seemed to
make little effort to get beyond the label of FASD client, to get to know them as
individuals, and in particular to identify and focus on their strengths and challenges as
parents. In these parentswords:
(Ministry workers) did show up on my doorstep, and they did have some problems
for about 6 months. They were totally doubting who I was, and maybe I shouldnt
have the kids. Because I had FAS, that made me a bad person.
Workers make me really frustrated; they dont know who I am really. All theyve got
is my name on a piece of paper and like just a little bit of information. They dont
know me personally. They dont know things that Ive accomplished and overcome;
you know, what my lifes been like.
Participants also felt as though their parenting was highly scrutinized for evidence of
mistakes or misdeeds, both by the state (represented by Ministry or contracted workers),
community service providers and the public at large. For example, one mother told of an
incident in which a misplaced bottle was viewed as an indicator of neglect:
There was a bottle that I found in the stroller that was there for maybe two weeks or
something. I asked them, Can you wash this out? It was sitting in the stroller for two
Int J Ment Health Addiction (2010) 8:351361 357
weeks. I was looking for it and I didnt know where it was.They wrote down I was
giving [my kids] sour milk and all that, and the kids were neglected and everything.
At the same time that participants were feeling pre-judged, they observed that, because
FASD is an invisible disability, other people all too often over-estimated their abilities or
trivialized the degree or nature of their disability. Along these lines, participants believed
that some social workers or service providers perceived them as being unmotivated or as
willfully flouting directives, rather than recognizing that the instructions had not been
understood in the first place. Participants further believed that parents sometimes paid a
steep price for workersand service providersignorance about FASD, particularly if child
welfare authorities perceived adults with FASD as being non-compliant, rather than in need
of ongoing assistance and support. As one support person stated:
I think that there is a tendency for people to overestimate the abilities of people with
FAS. They think and perceive that someone will be able to understand what theyre
being told and be able to follow instructions, and sometimes it just isnt so. Its not
a matter of not wanting to; theyre just not able to.
Policy-Related Barriers for Parents with FASD
Finally, based on participantsstories of their struggles, it was apparent that unsupportive
child welfare policies created systemic barriers that contributed to difficulties in parenting
with FASD. In particular, policies that prevented people from accessing parenting-related
supports and resources (e.g. respite services or specific parenting programs) unless they
were viewed as being at high risk of having their child apprehended or already had been
investigated by the child welfare authorities, were viewed as being at odds with the ongoing
support needs of parents with FASD. As one mother stated in response to why she did not
seek respite services from the Ministry:
I dont want them to think that I cant take care of my kids and that Im abandoning
them again. If Im in a really tight situation, then I would turn and see if I could get
respite, but that would be my last thing.
Similarly, a support person commented:
What happens is, parents get so scared of losing their children theyre afraid to ask for
help. They dont want to lose their children; they just want help raising them.
A second major policy barrier for parents with FASD concerned eligibility criteria for
Community Living resources that were, in practice if not in actual policy, IQ-based (i.e., adults
were only able to access these resources if their IQ was lower than 70). Community Living
resources that were identified by participants as being highly useful to parents with FASD
included supportive housing, respite that was not time-limited, and parenting programs that
were designed for people with cognitive disabilities. However, as has been shown in the
literature, for peoplewith FASD, IQ is a poor predictor of day to day functioning (Russell 2003,
2007). Thus, barring access to these services for parents with FASD was a significant barrier
to success in parenting and interdependent living. As one support person said of her son:
Hes never been tested, so we dont know if he has under-70 IQ. If youre not in that
low percentile, you dont get any services. So hes on his own.
A third policy barrier noted by participants was that parenting resources and supports,
including financial resources, were differentially available to different categoriesof
358 Int J Ment Health Addiction (2010) 8:351361
parents (i.e., foster, birth adoptive, and extended family, especially grandparents caring for
grandchildren). For example, foster parents were able to access respite and home support
workers, as well as financial benefits more easily than could other types of parents. By
contrast, grandparents caring for their grandchildren typically had limited access to
financial supports in parenting, even if they were caring for the child on a full time basis.
As noted by participants in the research, these policy issues affected and compounded
challenges faced by many Aboriginal families.
Discussion and Directions for Change
Our existing policy context, coupled with prevailing ignorance about the nature of FASD
and the day-to-day support needs of those living with FASD, has potentially profound
implications from both a health and a social justice perspective. Foremost among these,
illustrated in both this project and other research, was that parents experienced reluctance to
seek assistance for their secondary disabilities related to FASD (e.g., substance use or
mental health problems), for fear of that their needs for support would be viewed as
evidence of their incapability, leading to their child being apprehended. Similarly, parents
were afraid to seek a FASD assessment for themselves for fear of being labeled a bador
incompetent parent. This situation of mothers or pregnant women with addictions issues or
health/mental health needs going undergroundfor fear of scrutiny by child welfare
authorities has been well-documented in the literature (Poole and Isaac 2001; Rutman et al.
2000), and points to the clear need for more supportive policies for these parents.
In addition, the findings of this research attest to the tremendous need for ongoing
support for adults living with FASD, whereby access to the support is not gated by IQ-
related criteria, but rather by functional need. These findings are entirely congruent with the
emerging body of literature concerning the experiences and support needs of adolescents
and adults living with FASD (Dubovsky 2008; FASSY 2002; Lutke and Antrobus 2004).
Other sources of support can be found in past family and community history. In traditional
Aboriginal parenting practices, there was a broader responsibility than just the immediate parents.
Aboriginal elders often speak of families and communities coming together to meet the needs of
their children. Each member of the family had a role to play in raising the children. Within the
community, the roles and responsibilities of family members extended to all the children in the
community. Elders and family members will tell you that it takes a community to raise a child
(Van Bibber 1997). The Royal Commission on Aboriginal Peoples and the Assembly of First
Nation described a nurturing environment for early child development as follows:
In this early stage of development, children learned how to interpret and respond to
the world. They learned how to walk on the land, taking in the multiple cues needed
to survive as hunters and gatherers; they were conditioned to see the primacy of
relationships over material possessions; they discovered that they had special gifts
that would define their place in and contribution to the family and community. From
an early age, playing at the edge of adult work and social activities, they learned that
dreams, visions and legends were as important to learning as practical instruction in
how to build a boat or tan a hide. (Report of the Royal Commission on Aboriginal
Peoples, Volume 2, 1996, p 446447.)
Many of these traditional child rearing practices still exist in Aboriginal families
today despite the impact of five generations of residential schooling followed by
decades of child welfare apprehensions. Elders, parents and community members talk
Int J Ment Health Addiction (2010) 8:351361 359
about the need for child care services to reflect the customs, traditions, values and beliefs
of Aboriginal peoples, children must know who they are, they must be grounded in their
culture, language and traditions.(Greenwood and Shawana 1999,p.2).
At the core of all directions for change is the need for a shift in our thinking about Fetal
Alcohol Spectrum Disorder and our expectations for those living with it. Grounded in a
conceptual framework of FASD as a brain-based physical disability, thinking differently,
rather than harderhas been the mantra of numerous publications and educational materials
directed at those working with and caring for people with FASD (FASSY 2002; Malbin
2002). Our findings in this research echo the wisdom and the urgency of the message.
Participantsrecounting of their parenting goals, accomplishments, strategies and struggles
pointed the way to a range of supportive programs and wisepractices that need to happen as
part of the shift in thinking. Supportive programs named by participants included: flexible,
client-centred, outreach-oriented FASD prevention programs that worked with parents for years
after the baby was born; teaching homemaker programs; life skills programs with staff who
were knowledgeable about FASD; and child welfare workers who worked collaboratively with
parents (Rutman et al. 2005). Wise practices included using a relational approach, being non-
judgmental, non-condescending, and yet loving honestin order to bolster self-esteem.
From a policy perspective, recognizing the long-term cost-effectiveness of community-
based supportive services that are accessible and not contingent on restrictive eligibility criteria
is paramount. Similarly, shifting child welfare policies to enable families to access supportive
resources further upstream, in keeping with a prevention and early intervention/support
orientation is essential for parents with FASD and/or other disabling conditions.
At a program level, parenting education and support programs for adults living with FASD
need to be grounded in a deep understanding of FASD as a neuro-behavioural disability.
Programs that offer outreach-oriented support and advocacy and that use learning approaches
that are hands-on and experiential generally fit with the needs ofparents with FASD. Moreover,
a holistic and culturally appropriate approach to working with parents with FASD is essential.
Lastly, the importance of recognizing the degree of diversity that exists among people with
FASD, and the communities from which they come, cannot be overstated. It is imperative that we
get to know people as individuals with unique strengths, needs and contributions. Not only is this
vital in terms of policy development and service delivery, this message is key to relationship-
building, community awareness and development, and, ultimately, FASD prevention.
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... There is some evidence about the challenges and needs of parents with developmental disabilities in general, but very few studies have been focused specifically on the concerns of parents with Fetal Alcohol Spectrum Disorder (FASD). Recognizing this significant gap, researchers have been calling for more investigation into this area for the last two decades [4][5][6][7]. ...
... In a similar study, Canadian researchers examined the experiences of adults with FASD in relation to parenting through in-depth interviews with a small group of parents, support people, and service providers [6]. The researchers identified five key areas of relevance for parents with FASD. ...
... Despite having some success, parents with FASD in these studies also noted many challenges and barriers including system-level restrictions; lack of time, funding, personnel, resources and education; service providers' skills, attitudes, and expectations; and limited service access and coordination [4]. At the individual level, parents with FASD reported facing cognitive and sensory impairments, social vulnerability, lack of social supports and positive parenting role 3 models, exposure to intimate partner violence, substance use, and poverty and homelessness, all of which may compromise their ability to maintain health and safety for themselves and their family [6]. At the societal level, participants spoke of two broad, seemingly opposing, challenges. ...
... Finally, in a unique study with parents with FASD, Rutman and Van Bibber (2010) interviewed parents, their support people, and service providers, and reported on parenting hopes and goals, accomplishments and strategies, and challenges and barriers. Many of the parents' hopes and goals centered around their desire to "break the cycle" of abuse, child welfare-involvement, and substance use and provide a "better" life for their children. ...
Article
For many years, researchers have explored the complex challenges experienced by individuals with fetal alcohol spectrum disorder (FASD). This research has been important for documenting the brain‐ and body‐based impacts of prenatal alcohol exposure as well as the psychosocial vulnerabilities and environmental adversities frequently associated with FASD. It has also helped to support advocacy efforts and highlight the necessity of FASD services and supports. However, with this focus on deficits and needs, there is a considerable gap in the literature on the strengths and successes of individuals with FASD. The lack of strengths‐based FASD research has likely perpetuated the stress and stigma experienced by individuals with FASD and their families, and there is a critical need to shift the direction of the field. The current study was a narrative review of the literature on strengths in FASD. Our goals were to: 1) understand the state of strengths‐based research related to individuals with FASD across the lifespan, and 2) describe positive characteristics, talents, and abilities of individuals with FASD that may be cultivated to promote fulfillment and wellbeing. We identified a total of 19 studies, most of which were conducted to explore the lived experiences of adults with FASD. This preliminary but critical body of evidence highlights the intrinsic strengths of individuals with FASD, including strong self‐awareness, receptiveness to support, capacity for human connection, perseverance through challenges, and hope for the future. Despite the importance of this emerging evidence, appraisal of the literature indicated a need for more intentional, methodologically rigorous, participatory, and theory‐driven research in this area. Findings from this study, including the identified gaps in the literature, can be used to inform research, practice, and policy to meaningfully advance the field of FASD and promote positive outcomes in this population.
... The complexity of parenting is increased for parents of children with FASD due to multiple issues, including sleep and eating disorders, fine and gross motor delays, toileting, speech and language disorders, need for medication(s), ongoing travel (often years) for therapies, learning and behavior impairments at school, and unavailability of childcare for children with complex behavioral impairments as well as of respite care services [109][110][111][112]. The complexity of parenting increases during adolescence, as young adult life with FASD may be especially complex. ...
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Background: Alcohol is a teratogen and prenatal exposure may adversely impact the developing fetus, increasing risk for negative outcomes, including Fetal Alcohol Spectrum Disorder (FASD). Global trends of increasing alcohol use among women of childbearing age due to economic development, changing gender roles, increased availability of alcohol, peer pressure and social acceptability of women's alcohol use may put an increasing number of pregnancies at risk for prenatal alcohol exposure (PAE). This risk has been exacerbated by the ongoing COVID-19 pandemic in some countries. Method: This literature review presents an overview on the epidemiology of alcohol use among childbearing age and pregnant women and FASD by World Health Organization regions; impact of PAE on fetal health, including FASD; associated comorbidities; and social outcomes. Results/conclusion: The impact of alcohol on fetal health and social outcomes later in life is enormous, placing a huge economic burden on countries. Prevention of prenatal alcohol exposure and early identification of affected individuals should be a global public health priority.
... Several studies evidence that parents of children with FASD require and want support regarding their children with FASD (Chamberlain, et al., 2017;Hall and Graff, 2011;Ospina and Dennett, 2013). However, the present study found that the only parenting support offered was generic, which is inadequate for children with FASD as they require different parenting strategies to typically developing children (Paley and O'Connor, 2009;Rutman and van Bibber, 2010). As family support networks and non-pharmacological treatments are recommended for families of children with neurodevelopmental disorders (Hall and Graff, 2011;Young, et al., 2016), it would be beneficial if individuals within these networks were FASD aware as it would improve the efficacy of the support the children receive. ...
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Fetal alcohol spectrum disorder (FASD) is one outcome from prenatal alcohol exposure. Social workers are likely to encounter children with the condition, due to the greater likelihood of prenatal alcohol exposure among children in social services settings. This study explores the experiences of social workers in working with children suspected of having FASD and the support offered to social workers, the children and their families. Semi-structured interviews followed by qualitative framework analysis were conducted with seven child and family social workers along with one child protection solicitor who had experience of handling FASD cases. The two main themes that emerged from the data were a lack of knowledge about FASD and the paucity of diagnosis. Lack of knowledge among the social workers was linked to difficulty in managing children suspected to have the condition, feelings of frustration and normalisation of challenging behaviours. The paucity of diagnosis led to an under-emphasis of FASD in assessments, a dearth of specialist services and confusion about its specific effects in contexts of multiple substance misuse and harmful socio-environmental factors. The need for increased FASD awareness within social services and the development of FASD-targeted support for children and families is highlighted. Social workers would benefit from the inclusion of FASD-focused training in their curricula and professional development plans. Improving the diagnostic capacities of health institutions would address the paucity of diagnosis and raise the profile of FASD, especially in the social services setting.
... Experts describe the personal characteristics of workers as the key in avoiding client dropout when working with individuals with complex needs [28,29]. They describe an attitude of possibility, in which creative solutions to challenges are explored, complemented by a nonjudgmental, noncondescending perspective [28,30]. Experts also describe trustworthiness, empathy, availability, and maturity as important staff characteristics that may aid in successful service delivery. ...
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Purpose of Review There are a lack of system-wide integrative services for individuals with complex needs and a corresponding demand for advancing cross-disciplinary practices in community settings. This demand is especially acute for individuals with fetal alcohol spectrum disorder (FASD) and a gap we have sought to address. Recent Findings We present findings from a literature scan to guide service delivery for individuals and families affected by FASD and other complex needs: four overarching guiding principles for policy decision-makers, seven guiding practices for organizations, and 23 guiding practices for service providers. Summary These identified principles and practices bridge diverse perspectives, with potential for their implementation to provide consistent, evidence-based services to underserved populations with complex needs.
... In recent years, there have been a few published studies aimed at providing a more balanced perspective. These include studies related to the following: education interventions (Bertrand, 2009), advocacy (Grant, Ernst, Streissguth, & Porter, 1997), community intervention (Grant, et al., 2004), the experience of parenting with an FASD (Rutman & Van Bibber, 2010), insight into the young adult experience with FASD (Ryan & Ferguson, 2006), experience of women with FASD and substance abuse issues (Rutman, 2011), experiences of transitioning to adulthood from child welfare care (Burnside & Fuchs, 2013) and parenting a child with FASD (Leenaars, experiences and identity of adults with FASD, as well as the factors that influence the development of individual identity. ...
Article
The teratogenic effects of prenatal alcohol exposure (PAE) can cause irreversible physical and neurological impairments that are present at birth and can have lifelong implications (McGee & Riley, 2007). One’s capacity to interact productively and effectively with one’s surroundings can be influenced further by positive and negative life events and access to appropriate social support services (Center for Disease Control and Prevention, 2004). Fetal Alcohol Spectrum Disorder (FASD) is a term used to describe a group of diagnoses and effects related to prenatal alcohol exposure (Center for Disease Control and Prevention, 2004). Since the effects of alcohol on a fetus were not recognized formally until the mid- twentieth century, it is likely there are generations of people who are affected by this condition but remain unidentified because they were born before the sequelae of gestational alcohol exposure were understood and well documented (Massey, 2011). Few scholarly works exist that accurately represent the subjective experience of adults who have lived with the unidentified characteristics of prenatal alcohol exposure and the social and cultural factors that influence the development of their individual identity. A narrative-style qualitative research methodology was used to explore the identity of adults living with FASD, in particular those who learned about this during adulthood. The researcher interviewed four adults living with the effects of FASD who became aware of their FASD as adults and reviewed several published autobiographical accounts as additional data sources. Upon analysis, themes of identity emerged and parallels between the life stories of the participants and other studies that address the psycho-social effects of FASD were identified. The research results suggest implications for social work practice, bring positive attention to a disenfranchised group, identify areas of needed study and shed insight into how adults living with the effects of FASD conceptualize their identity.
Chapter
Afflicting millions of individuals across the United States, Fetal Alcohol Spectrum Disorder (FASD) is a permanent disorder present from birth that results from prenatal alcohol exposure (PAE). FASD can consist of a wide range of physical (e.g., dysmorphia, sensory systems, musculoskeletal conditions), cognitive (e.g., intelligence and executive control), social (e.g., communication skills and empathy), and adaptive (e.g., independent living skills) symptoms. These impairments of FASD have important consequences across the lifespan including a predisposition to substance use issues and other co-occurring psychiatric disorders (e.g., behavioral, mood, and anxiety disorders). This complex interplay of co-occurring symptomatology complicates the identification and diagnosis of FASD, which often results in overlooked diagnosis and misdiagnosis of the disorder well into adulthood. To help familiarize clinical and forensic mental health professionals with this challenging, resource-intensive population, this chapter will provide an overview of FASD in adult populations. Red-flag indicators and common comorbid symptomatology as well as screening and intervention approaches will also be included. Further, the chapter will include a discussion of interviewing strategies and techniques that have the potential to improve screening, assessment, and treatment of the disorder, with an eye toward adult clinical and forensic mental health settings. This chapter will conclude with an examination of the current state of empirical research on FASD and identify the next steps for inquiry.
Article
While a significant number of individuals in Canada and globally are affected by prenatal fetal alcohol exposure, scant research exists that focuses specifically on the subjective experiences of this population. Based on a single case study exploring through Photovoice methodology the life experiences of a young adult with Fetal Alcohol Spectrum Disorder (FASD), this research paper utilises Schwab’s curriculum commonplaces as a framework to present results pertinent to the field of Education. Four themes emerged that illuminate the participants’ resilience and self-awareness of issues related to independence versus support, strengths and challenges, attitude and adaptation strategies, and advice for others. Curriculum suggestions based on the findings are offered for educators working with young people with FASD in general education settings. Further implications for Education and suggestions for additional research are included.
Article
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We critique published incidences for fetal alcohol syndrome (FAS) and present new estimates of the incidence of FAS and the prevalence of alcohol-related neurodevelopmental disorder (ARND). We first review criteria necessary for valid estimation of FAS incidence. Estimates for three population-based studies that best meet these criteria are reported with adjustment for underascertainment of highly exposed cases. As a result, in 1975 in Seattle, the incidence of FAS can be estimated as at least 2.8/1000 live births, and for 1979–81 in Cleveland, ∼4.6/1,000. In Roubaix, France (for data covering periods from 1977–1990), the rate is between 1.3 and 4.8/1,000, depending on the severity of effects used as diagnostic criteria. Utilizing the longitudinal neurobehavioral database of the Seattle study, we propose an operationalization of the Institute of Medicine's recent definition of ARND and estimate its prevalence in Seattle for the period 1975–1981. The combined rate of FAS and ARND is thus estimated to be at least 9.1/1,000. This conservative rate—nearly one in every 100 live births—confirms the perception of many health professionals that fetal alcohol exposure is a serious problem.Teratology 56:317–326, 1997. © 1997 Wiley-Liss, Inc.
Research
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Beginning in 1994, various national and First Nations initiatives in Canada have increased the availability of child care for Aboriginal children. However, the speed of these initiatives has not allowed time for First Nations communities to define their wishes for the care of their children. This report documents the opinions of First Nations communities on quality child care and presents recommendations for program development. An extensive literature review examines Canada's Aboriginal population, the historical context of Aboriginal-White relations in Canada, the need for Aboriginal child care services, traditional child-rearing practices, First Nations jurisdiction and authority in child care, research on quality child care, and diversity issues in child care. Interviews with key informants and focus groups in First Nations communities were conducted in British Columbia, Saskatchewan, and Ontario, which have very different contexts in terms of provincial legislation and licensing and the extent and duration of First Nations child care programs. Participants identified historical, social, and political influences affecting development of Aboriginal child care services; aspects of quality child care related to the physical environment, caregivers, caregiver training, educational and cultural programming, content of teaching, parent and community involvement, and child grouping; and supports and barriers created by child care regulatory schemes. Extensive recommendations are offered in each of these areas and are summarized in tabular form. Appendices include study questionnaires list of Steering Committee members, study permission forms and letters, and individual reports on the three provinces.
Although the research is sparse, it appears that specific interventions may help children with FAS better overcome their cognitive and behavioral problems. Special strategies such as consistency, a structured environment, and attention to learning skills can help these children develop to their highest potential.
Article
There are few explicit discussions in nursing literature of how qualitative research can be made as rigorous as it is relevant to the perspective and goals of nursing. Four factors complicate the debate about the scientific merits of qualitative research: the varieties of qualitative methods, the lack of clear boundaries between quantitative and qualitative research, the tendency to evaluate qualitative research against conventional scientific criteria of rigor, and the artistic features of qualitative inquiry. A framework for understanding the similarities and differences in research approaches and a summary of strategies to achieve rigor in qualitative research are presented.