FASD is a brain-based injury that can produce a wide range of physical, behavioural and cognitive symptoms. It is found in all cultures and social classes, however, poor access to education and support services is a factor in there being higher rates of FASD in some rural and disadvantaged communities.
Those with FASD may have delays in their social and intellectual development, including learning disabilities, difficulty understanding the consequences of their actions, depression, obsessive-compulsive disorder, physical disabilities and abnormalities. There is no cure for FASD, but early intervention can help minimise the impact on children. People with FASD may need life-long support to deal with these difficulties.
Due to its vast geography and sparse population, Canada faces challenges to educate young women about the risks of FASD and how to prevent it, identify children early who may have the condition, and put services in place to minimise its effects. It is why the country has led the way over the past 20 years in developing diagnostic protocols and a network of support centres to help children and families affected by FASD.
CULTURE AND SOCIETY
There are no national statistics on the rates of FASD in Canada, although it is estimated that more than 3,000 babies a year are born with the condition. Some estimates suggest that up to four per cent of the Canadian population – 1.4 million people – currently live with FASD.
A 2012 Canadian Alcohol and Drug Use Monitoring Survey reported that 70 per cent of females aged 15 to 24 reported drinking alcohol in the last 12 months. Evidence suggests around half of all pregnancies are unintended, and women often continue their usual pattern of alcohol consumption into the early weeks of an unplanned pregnancy. The highest rates of unintended pregnancy occur in women aged 15 to 19, which is also a population at increased risk for binge drinking.
The indirect and direct costs for supportive needs in health, mental health, social services, and education, as well as the negative costs through criminality and criminal justice system involvement, are estimated to be almost $10bn a year.
Research suggests that the occurrence of foetal alcohol syndrome (FAS) is significantly greater in rural, remote communities, often with large populations of indigenous people. For example, a study of a First Nations community in Manitoba province found the prevalence of FAS was estimated to be up to 101 per 1,000 live births. Other studies have estimated the rate of FAS and related effects at 46 per 1,000 native Canadian children in the Yukon, and 25 per 1,000 in northern British Columbia.
FASD is challenging to detect and diagnosis relies on an inter-disciplinary team approach, yet diagnostic services are not widely available in rural and remote areas of Canada. Many families are also reluctant to seek a differential diagnosis because of the stigma associated with addiction and substance use.
The government of Canada has initiated many projects to deal with the impact of alcohol use during pregnancy, alongside work to reduce the instances of alcohol consumption during pregnancy by educating communities about the risks.
In 2003, Health Canada released FASD: A Framework for Action to guide the development and implementation of collaborative efforts to address the issues associated with FASD. When Canada’s Drug Strategy was renewed in 2003, investments helped develop and distribute the diagnostic guidelines and planning tools to guide earlier assessment.
In 2005, guidelines for diagnosis were published in the Canadian Medical Association Journal through support from the Public Health Agency of Canada and the First Nations and Inuit Health Branch of Health Canada. The guidelines, which were updated in 2011, emphasised that an interdisciplinary team rather than a single practitioner was preferred for completing a diagnostic assessment. They recommend that the team have a co-ordinator, a physician who can identify the physical features of FAS and/or other conditions that might be present leading to brain dysfunction, and a “brain assessment group” composed of a clinical psychologist, speech pathologist and occupational therapist.
Health Canada’s First Nations and Inuit Health Branch provides community-based programming to reduce FASD births and improve the quality of life for those affected by FASD. Programmes include: training for community health workers and early childhood educators to increase community awareness; helping communities develop local plans to reduce FASD; and supporting mentoring projects that pair pregnant at-risk women with community members who have had similar experiences.
In Manitoba, a sparsely populated province with 1.3 million citizens of which 18 per cent are of indigenous heritage, the regional government developed a FASD Strategy in 2007. Together We Are Stronger: Continuing the Success of Manitoba’s FASD Strategy, sets out how to meet five key goals:
- Knowledge: Drinking alcohol during pregnancy can cause FASD
- Prevention: Before, during and after pregnancy, girls and women have information, support and services
- Intervention: People with FASD and their families have assessment and diagnostic opportunities, supports and services
- Evidence: Services are based on strong research, evaluation and community input
- Quality: Trained service providers using best practice approaches
PRACTICE AND SERVICES
Problems caused by prenatal alcohol exposure may not be noticed until children are in school or until the teenage years because this is when those affected often have significant difficulty meeting societal expectations.
There is a network of more than 40 health clinics across Canada’s seven provinces and one territory that take referrals to diagnose FASD among children and young people. These are staffed by multidisciplinary teams who contribute to treatment plans.
The Manitoba FASD Centre is a multidisciplinary assessment, education, training and research service of the Winnipeg Regional Health Authority Child Health programme. The centre, established in 2009 and funded by the health authority, provides assessment and diagnosis of FASD in individuals.
Children are assessed by a psychologist, a speech pathologist and an occupational therapist at school or in the community. There is also access to a social worker to discuss familes’ concerns. Assessments consider a child’s language and motor skills, behaviour, relationships and school experiences.
The centre uses different assessment processes for pre-school and school-age children, and adolescents. The pre-school team consists of a developmental paediatrician, geneticist, occupational therapist, social worker and speech and language expert. Follow-up is provided in partnership with early intervention community resources.
For school-age children, assessment involve up to five one- or two-hour appointments, with the centre offering parent education sessions and follow-ups with schools after diagnosis.
For adolescents, the assessment process includes individual psychology, occupational therapist and speech pathologist. Once an assessment is made, an educator discusses the findings with parents and what support they can access. The centre could recommend therapy, school support and help with behaviour management.
Data collected by the Manitoba government shows the introduction of the FASD strategy is helping to reduce the risk of FASD and improve outcomes for children with the condition. According to Families First Screen, the rate of alcohol use during pregnancy fell from 16 per cent in 2007 to 11.7 per cent in 2013.
Meanwhile, an evaluation of a counselling programme for girls shows that drinking habits improved significantly after participation.
Nearly 300 families have joined the Building Circles of Support network, which offers educational sessions for parents, caregivers and service providers on what a child’s diagnosis of FASD means for them.
In addition, hundreds of FASD assessments have been carried out on young people in conflict with the law through the region’s youth justice programme.
- Each year, thousands of babies in Canada are diagnosed with foetal alcohol spectrum disorder and it is thought that up to 1.4m Canadians live with the condition
- Studies suggest that rates of FASD are higher among citizens from indigenous and rural communities due to socio-economic factors
- FASD is associated with an increased risk of learning difficulties, mental health problems and physical disabilities
- Canadian government and regional provinces have developed frameworks to support early identification of FASD and funded therapeutic interventions
- In Manitoba, this focus has been praised for reducing instances of drinking during pregnancy
- Scotland is leading the way in the UK, establishing a FASD Hub to improve support for parents with children affected by the condition
FASD SCOTLAND HUB
Last June, Adoption UK Scotland launched the FASD Hub Scotland to provide support services for parents and carers of children and young people who were, or who are suspected to have been, exposed to alcohol while they were in the womb. The incidence of FASD is particularly high among care-experienced and adopted children. FASD Hub Scotland is a tiered service:
Tier 1 provides access to the specialist FASD advisers via the Adoption UK information helpline who can provide information, advice and signposting for all parents/carers within Scotland and professionals supporting these families, and online resources via FASD Hub Scotland webpage
Tier 2 provides a combination of online community groups offering parents/carers peer support that is moderated by the FASD advisers; access to one-to-one support for parents/carers from a named FASD adviser through self-referral; access to a workshop and training programmes that includes sessions for parents/carers and the professionals who support these families.
Tier 3 provides access for adoptive parents, foster and kinship carers to therapeutic services and those run by Adoption UK Scotland.
FASD Hub Scotland has been established through a three-year grant from the Scottish government. Aliy Brown is the project lead, supported by three FASD advisers.
Brown says: “We cannot cure FASD, but many people can live very successfully with it, if provided with the right support at the right time.”
Scottish public health minister Joe FitzPatrick says: “It is vital that we recognise the needs of this group of children and young people and ensure that the right support is available to them and their families when they most need it.”