The focus of this project is on young people 30 years of age and younger who have been affected by prenatal alcohol abuse. We acknowledge the fact that prenatal exposure to drugs is a serious issue and results in significant impairment to babies. However, the research evidence is quite clear on the fact that many women who abuse alcohol during pregnancy also use drugs, and it is impossible to differentiate the negative effects of any one specific drug from that of another, or differentiate the impact of prenatal alcohol abuse from prenatal drug abuse. Likewise, when the infants of mothers who abuse only alcohol are compared to those of mothers who only abuse drugs during pregnancy, no major differences are evident. Children exposed to maternal alcohol and/or drug abuse suffer a wide range of mild to severe problems.3
The long term goal of this project is to encourage support for early detection of FASD and ultimately break the cycle of prenatal alcohol abuse within the Aboriginal population. This can be achieved in part by strengthening the networks among academia, government, Aboriginal organizations, local youth service providers, child protection agencies, educational and judicial systems, health services, police forces, and early intervention and prevention programs to promote awareness of FASD and its differential impacts. NWAC will maintain a grass roots approach to facilitate the development of a community based participatory research agenda. Specifically, we will:
Collaborate with experts4 and researchers in the field to scope the issue and identify a broad based research direction;
Collaborate with NWAC internal structures (Health Advisory Committee, Sisters In Spirit staff, Provincial/Territorial Member Associations, Youth members, and Elders) and local service providers to identify research priorities;
Expand NWAC’s network of local service providers and others dealing with Aboriginal youth involved in sexual exploitation and gangs; and
Develop an action plan for the next phase of this project – undertaking qualitative, participatory research with high-risk youth and families in strategic geographic regions of Canada.
Fetal Alcohol Spectrum Disorder in Canada
Fetal Alcohol Spectrum Disorder (FASD) is the umbrella term used to describe the entire continuum of disabilities, from most severe to least severe, of prenatal exposure to alcohol. It includes the related conditions of Fetal Alcohol Syndrome (FAS),5 Fetal Alcohol Effects (FAE), Alcohol-Related Birth Effects (ARBE) and Alcohol-Related Neurodevelopmental Disorder (ARND).6 FASD is the most common cause of mental retardation in North America. The physical, mental, behavioural, and intellectual disabilities (commonly referred to as ‘primary’ disabilities – meaning permanent brain damage that results in impaired mental function) resultant from maternal alcohol exposure are lifelong and include: skeletal abnormalities (for example, facial deformities); physical disabilities (for example, kidney and internal organ problems); cognitive impairment (such as difficulty comprehending the consequences of one’s actions); and learning disabilities (such as those related to mathematical concepts).
Most children with FASD will never be financially or socially self-sufficient. They are at high risk for neglect, physical abuse, sexual abuse, violence, maternal death and abandonment. Studies with school children who have FASD indicate elevated rates of disruptive behavioural disorders at home and at school. Boys are highly likely to display early onset aggressive behavior disorders. Many appear to lack guilt, are cruel to others, and are more likely to lie and steal. Combined with other social deficits, these traits result in violent behavior.7 Despite these negative outcomes with many young people suffering from FASD, there are well documented success stories. Early diagnosis can identify a child’s problems and support the treatment needed to maximize his or her abilities. It can also help in the identification and support of high risk women to prevent FASD in other babies. However, caution is required here because diagnoses can result in negative labeling, which can be used to predetermine negative pathways and limit growth of FASD children’s potential.8 It is important to develop resiliency and strengths in these young people.
Secondary disabilities, which are not present at birth but occur as a result of the primary disabilities (such as brain damage), have also been thoroughly investigated. With appropriate interventions, secondary disabilities such as mental health and school problems can be prevented or reduced. They result from the social environment in which the child lives.9 Longitudinal studies on relatively large samples have investigated these lifelong secondary effects. Of particular relevance for this project are the findings related to victimization, violent offending and association with criminal peers. The vast majority of participants in these studies (approximately three quarters or more) have suffered long-term physical and sexual abuse as children and continue to be victimized as adults, have disrupted school experiences (suspensions, expulsions, dropping out), have problems with employment and living independently, and have mental health problems (suicide threats and attempts, psychosis, depression, panic attacks). A smaller majority (roughly two thirds) have histories of youth and adult offending behavior. The most common crimes committed are those against persons (theft, burglary, physical and sexual assault, murder, domestic violence, child molestation), followed by property damage, possession/selling of drugs, and vehicular crimes. Approximately two-thirds also have addictions problems. Roughly one-half have attention deficit and conduct problems, including ‘inappropriate’ sexual behavior.10 As a result of these serious issues, many of these young people have experienced long-term placement in child welfare, mental health and justice facilities. Many FASD babies are hospitalized for a variety of conditions. In addition, there appears to be an intergenerational aspect to FASD (although there is no evidence to suggest it is hereditary): young women with FASD are highly likely to drink during their own pregnancies and about one-third of their children are born with FASD. The children of young mothers with FASD are thus highly likely themselves to be taken into the care of the child welfare system. 11
It is important to note that although FASD is a permanent, lifetime brain injury, there is a broad range of characteristics that vary from person to person. For example, the IQs of 75-80% of people with FASD are within the average range.12 The severity of FASD-related problems is directly linked to the level of pre-natal alcohol consumption: mothers who drink frequently and have many drinks at one time have babies with more severe impairments compared to mothers who drink less frequently and have fewer drinks at one time. There are several protective factors which can lead to better outcomes for individuals with FASD, including early diagnosis and intervention, living in a stable home, protection from violence, and school bonding.
There are no national statistics on the prevalence of FASD in Canada, although data exist on rates in other countries. In the USA, FAS prevalence is estimated at 1 – 3 per 1000 live births and FASD prevalence is reported at 9.1 per 1000 live births.13 Health Canada uses these rates for estimating prevalence in Canada, where it is believed that one percent of the population has FASD (about 300,000 people).14 There have been a handful of studies estimating prevalence in small Aboriginal communities located in British Columbia, Manitoba, Saskatchewan and in the Yukon. These studies suggest that prevalence rates are elevated in these communities, although methodological problems exist.15 Prevalence rates for FASD in these studies range widely from 7.2 - 190 per 1000 live births.16 FAS prevalence ranges from 0.515 – 101 per 1000 live births.17 Studies in other countries have also found higher rates of binge drinking in North American Aboriginal communities.18 These prevalence rates, both in the USA and in Canadian Aboriginal communities, are likely only the tip of the iceberg because diagnosis is quite rare and usually occurs in adolescence or adulthood. 19
Although FASD disproportionately affects Aboriginal people, Aboriginals suffer from many other disabilities (such as learning disabilities, physical disabilities) at a prevalence rate estimated to be double that of the non-Aboriginal population in Canada (32% compared to 16%).20 A high proportion of Aboriginal youth involved with the Canadian youth justice system have disabilities, including FASD.21 Some authors suggest that these individuals, because they cannot live an independent lifestyle, are excluded from participating in community life. Many leave their home reserve and get lost in the urban city, 22 where they are easy prey for exploitation and gang recruitment. One reason behind the higher prevalence of disabilities within the Aboriginal population relates to lack of access to quality health care.
What has been the role of government in addressing FASD in the Aboriginal population? In 1999, the federal government created the National FASD Initiative through the expansion of the Canada Prenatal Nutrition Program. Since then, yearly funding has been allocated to address FASD issues in the Aboriginal population. The First Nations and Inuit FAS/FAE Initiative is delivered through the First Nations and Inuit Health Branch (FNIHB) and the Population and Public Health Branch (PPHB). FNIHB is responsible for delivering First Nations and Inuit Component programs to First Nations (on-reserve) and Inuit communities.