Shelley L. Watson, Ph.D.
Elisa Radford-Paz, BA
Laurentian University
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What is Fetal Alcohol Spectrum Disorder
(FASD)?
Brief History of Family Research and Theory
Raising a Child with FASD in Northern Ontario
◦ Methodology and Rationale
◦ Preliminary Findings
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Implications and Future Directions
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Based on a 4-digit Diagnostic Code developed by
Astley and Clarren
Individuals are screened and then assessed in 4 areas:
◦ Growth deficiency
◦ FAS facial phenotype
◦ CNS damage or dysfunction
◦ Gestational exposure to alcohol
Ranking scores in each area range from 1 to 4
Possible Diagnoses: FAS, Partial FAS, FAE, ARND, ARBD
(Chudley et al., 2005)
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First-generation research on the impact of child
disability on families (mothers) presented a bleak
picture of stress, burden, depression, social
isolation, and psychological dysfunction
◦ e.g., Solnit and Stark (1961)
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As research became more refined, apparent that
disability per se is not necessarily a predictor of
dysfunction
◦ Hosts of variables appear to influence the relationship
between disability and adaptation or maladjustment
Family Adjustment and
Adaptation Response
(FAAR) Model
(Patterson & Garwick, 1998;
shown with permission)
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Most research on family adaptation to
disability has focused on children with
mixed disability or type of disability is not
mentioned
◦ Certain conditions predispose individuals to
specific adaptive and maladaptive behaviours,
strengths and weakness, as well as health
vulnerabilities
◦ Therefore, an exploration of family responses to
receiving different diagnoses is relevant
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Little is known about families of children
with FASD
◦ No studies on families in Northern Ontario
found
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Mixed Methods design
◦ Qualitative Interviews
 Basic Interpretive Qualitative Inquiry
(Merriam, 2000)
◦ Questionnaires
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Hope Scale (Snyder et al., 1991)
Family Resource Scale (Dunst & Leet, 1986)
Parenting Stress Index – Short Form (Abidin, 1995)
Questionnaire on Resources and Stress – Short
Form (Friedrich, Greenberg & Crnic, 1983 )
 Family Crisis Oriented Personal Scales
Olson, & Larsen, 1991)
(McCubbin,
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Basic Interpretive Qualitative Inquiry
◦ Seeks to describe, interpret, and understand
another’s perspective (Merriam, 2002)
 Focus on meaning
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Parents’ ability to ascribe meaning to their
child’s disability and their own parenting
experiences significantly influences
experience
◦ Families fare better when they are able to make meaning of
the disability (Pakenham, Sofronoff, & Samios, 2004)
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Families in Northern Ontario
◦ Greater Sudbury, North Bay, Sault Ste. Marie, Thunder Bay
so far
◦ 33 parents/guardians from 25 families
 3 birth mothers
 1 birth mother to two children with FASD
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1 birth father
16 adoptive and/or foster mothers
8 adoptive and/or foster fathers
2 custodial grandmothers
 also believe their daughters have FASD
 1 custodial great grandmother
 1 custodial great grandfather
 1 custodial sister
Parenting Stress Index
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Overall level of parenting stress
• Parents who obtain a Total Stress score at or above
the 90th percentile are experiencing clinically
significant levels of stress.
• Nineteen parents scored above the 90th percentile
for Total Stress. The only parents to score lower
than the 90th percentile were Audrey and Tamara.
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Basic behavioural characteristics of children
that make them either easy or difficult to
manage.
e.g., “My child’s sleeping or eating schedule was much
harder to establish than I expected”
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“It’s just frustrating”
◦ Search for a diagnosis
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“FASD, ADHD, ODD, QRST…”
◦ A focus on labels
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“100% of the time, you just have to be aware”
◦ Challenges faced by family members
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“She has been a tremendous support”
◦ What has helped
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“Safe, appropriate respite”
◦ What would help
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Northern Ontario issues
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Technology
Specialists in Toronto
Lack of confirmed maternal drinking
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“and it’s highly suspected because of pediatricians and
doctors that we’ve seen. It can’t be diagnosed for sure
unless the birth mother would admit to it… but doctors
and psychologists and psychiatrists and everybody has
said that it’s highly suspected to be FASD… they won’t
diagnose her in Toronto until they get proof of maternal
drinking… It’s just frustrating because the [doctors],
they said, there’s not much more we can do from here…”
(Marianne, adoptive mother)
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Multiple Labels
◦ ADHD; ODD
◦ Reluctance to give a diagnosis of FASD
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Sleep issues
◦ “She has a hard time falling asleep… she would be up
wandering around at 2 or 3 in the morning and she was a
danger to herself… She would get into some things at
nighttime, so we had to put a system on her door, so we
knew that she was up” (Donna, adoptive mother)
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Childhood issues
◦ “24/7 you have to be aware. You never really can settle...
You can never take anything for granted” (Sarah, adoptive
grandmother; birth mother)
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Adolescence issues
◦ “I guess more or less in their teens, that life on a
rollercoaster began with them” (Kaylee, adoptive mother to 2
children with FASD)
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Someone to listen
◦ FASD coordinator or support group
◦ “I’m on FAS Link... It’s been a wonderful support. I
learn stuff there every day. I belong with them. That
is so important. That is why I started the parent
support group” (Gabrielle, adoptive mother and FASD
educator)
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Reluctant to leave child
◦ Need someone they can trust who understands the
unique needs of children with FASD
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Continue interviews
◦ Birth Mothers
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Rethink diagnostic process
◦ Focus on labels
◦ Confirmation of maternal drinking
◦ Access to quicker diagnosis
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Consortium National de Formation en
Santé (CNFS)
Health Canada
Laurentian University Research Fund
•
Extent to which respondent approaches the
questionnaire with a strong bias to present
the most favourable impression to minimize
problems or stress in the parent-child
relationship.
• Scores below the 10th percentile are considered
significant.
• Most parents scored higher than the 10th percentile,
suggesting that they did not use defensive
responding.
• One parent scored below the 10th percentile.
e.g., “I often have the feeling that I cannot handle things well”
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FAS vs. FAE
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“The diagnostic process for FAE is a nightmare. I’ve
actually given up on getting a formal diagnosis” (Karen,
foster mother)