Executive summary: Assessment and diagnosis of FASD among adults: a national and international systematic review

Executive summary

The scope of this project was to discover and review the existing literature in relation to adult diagnosis of Fetal Alcohol Spectrum Disorder (FASD). This is a developing field where, although the primary focus has been on the diagnosis of children, in recent years there has been an increasing emphasis on adult and adolescent assessment and diagnosis. Since the initial concern of Fetal Alcohol Syndrome (FAS) was raised in the literature in 1973 by Jones, Smith, Ulleland & Streissguth, and Lemoine, Harousseau, Borteyru & Menuet (1968), scientific research and practice responses have emerged from a wide variety of disciplines. One of the points emphasized by Stratton, Howe & Battaglia (1996) when the Institute of Medicine published its guidelines for diagnosis of FASD was that multiple disciplines were required to respond to this issue. However, social science research has not kept pace with biomedical research. Leadership on FASD research has clearly emerged from the discipline of medicine (Jones et al., 1973) and was initially related to the biological complexity of disorders related to alcohol exposure in utero. The psychosocial implications of a diagnosis of FAS/FASD emerged over time, often through insistent concerns raised by parents, foster parents and members of professions such as psychology, social work, community rehabilitation, nursing and justice. Since the diagnosis has been maintained within a medical paradigm, the leading research emerged from this discipline. Canadian researchers have developed Canadian Guidelines for Diagnosis (Chudley et al., 2005). While the physical etiology of FAS/FASD was well documented, the social etiology slowly unfolded as awareness grew of the profound impact of alcohol exposure on human development. In particular, Streissguth (1997) was a pivotal researcher in bringing awareness to the psychosocial issues related to a diagnosis of FAS (Streissguth, 1997; Streissguth & Kanter, 1997) and FASD (Streissguth & O’Malley, 2000).

Alcohol-exposed individuals, both children and adults, have specific concerns that require assessment leading to diagnosis, and subsequently, a treatment plan based on individual strengths, problems and needs. Although it is widely recognized that it is important to diagnose children, the same concern exists for adults. Awareness of FASD has grown within the medical and helping professions due to ongoing training initiatives with leadership from organizations such as the Canada Northwest FASD Partnership and Research Network, the Atlantic Intergovernmental FASD Partnership, the FASD Intergovernmental Action Network for Ontario, and individual provinces such as Quebec. In terms of addressing educational needs related to FASD, there is an annual Alberta FASD conference and the University of British Columbia’s Continuing Education holds annual conferences in collaboration with the B.C. Centre of Excellence for Women’s Health. As awareness of FASD has grown across Canada and internationally, educational opportunities have increased and the Canadian Centre for Substance Abuse has identified an inventory of trainers.Footnote 1 The strategic plan of the FASD Cross-Ministry Committee in Alberta focused on highlights for practice, while the University of British Columbia’s Continuing Education holds annual conferences in collaboration with the B.C. Centre of Excellence for Women’s Health and the Alberta Fetal Alcohol Network. Additionally, the Public Health Agency of Canada has funded a number of strategically directed research initiatives related to Indian and Northern Affairs Canada, Justice Canada and Youth Justice Policy, and Public Safety Canada. It is recognized that this is not an exhaustive list as many awareness, training and intervention initiatives have evolved over the years.

The need to diagnose adults has emerged from multiple sectors (e.g. health, justice, housing, education, social services). The understanding of the need to support families through identification of FASD in both children and adults will promote healthier families and communities.

In taking up this review of the available research literature on FASD, it was clear that research is emerging that focuses on adults (e.g. Barr et al., 2006; Boland, Chudley & Grant, 2002; Bookstein, Streissguth, Sampson, Connor & Barr, 2002; Camden & Spiegel, 2007; Chudley, Kilgour, Cranston & Edwards, 2007; Clark et al., 2008; Connor, Sampson, Streissguth, Bookstein & Barr, 2006; Duquette, Stodel, Fullarton & Hagglund et al., 2006; Fagerlund et al., 2006; Famy, Streissguth & Unis, 1998; Kerns, Don, Mateer & Streissguth, 1997; Rudnick & Ornoy, 1999; Spear & Molina, 2005; Spohr, Willms & Steinhausen, 2007; Streissguth, 1994; Streissguth, Sampson & Barr, 1989; Sullivan, 2008; Yates, Cadoret, Troughton, Stewart & Giunta, 1998). This emerging knowledge raises concerns about the need to offer these individuals the opportunity for diagnosis. This same research highlights some of the challenges faced in assessing adults. Many individuals are diagnosing themselves based on personal family histories related to alcohol use during pregnancy, while others are being referred for assessment by various social, health care and mental health professions. An area that has not been explored in the literature is the social consequences of self-diagnosis.

The process of searching, locating and evaluating the existing literature in relation to adult diagnosis has been refreshing. It presented an opportunity to engage in a focused process that truly highlights the need for a standardized approach and response to alcohol-exposed adults. This literature review has provided a venue for understanding and support, important for a brighter future for individuals and their families/support system for moving forward cognizant of the particular needs arising from FASD.

The key areas in this report include an introduction, literature review methodology, and a literature review of adult diagnosis and assessment, implications and conclusions. We focused on both Canadian and international literature, using the following process:

  1. Conduct a systematic search and assembly of Canadian and select international, empirical and qualitative literature and data on the assessment and diagnosis of adults for the impact of in utero exposure to alcohol.
  2. Create a synthesis and critical review of the information obtained, including the identification of strengths, limitations and gaps.
  3. Prepare recommendations of next steps for areas of further research.

This process yielded information that was impressive because of the short time frame associated with this project. Clarren and Lutke (2008) reported that there are at least 27 clinics in Western and Northern Canada engaged in diagnostic activity related to FASD, with a few of these facilitating or specializing in adult diagnosis. In contextualizing adult diagnosis, the critical issue of the problematic misuse of alcohol was highlighted. This remains a core issue requiring targeted efforts at treatment and long-term support, particularly for women who are at risk, or have previously given birth to, a child with FASD. Further, concerns for the partners of women who are the biological fathers must be addressed, as there is a paucity of literature on this topic. Considering that FASD emerged in the literature 40 years ago in France (1968) and in 1973 in North America, progress on responding to this issue has been both remarkable and substantial – due to the efforts of dedicated physicians, families and professionals who support positive outcomes for alcohol-exposed children and adults. As the children who have been diagnosed over the past decades grow up, they have paved the way to deepening our understanding of their needs and challenge us to develop models of excellence in response to assist them in negotiating the world around them. Many of those concerned have stepped up to the challenge by consistently making efforts to develop models of excellence in the diagnosis of FASD, including adult diagnosis.

The Canadian model for diagnosis has drawn on both the U.S. Institute of Medicine (1996) as cited in Hoyme et al. (2005) and the Diagnostic Prevention Network 4-Digit Diagnostic Code developed by Astley and Clarren (1999). It is described in greater detail in this report. The Canadian guidelines retained the standards of the 4-Digit Diagnostic Code and the spectrum terminology of FASD from the U.S. Institute of Medicine (IOM) model.

One of the concerns that arises in diagnosis is the differential use of terminology internationally. There remains an inconsistent lack of understanding of diagnostic terminology outside of the medical professions, as the focus of health and social service professionals lies outside of these parameters. A basic understanding of FASD exists, but a model for understanding the intricacies and implications of this diagnosis in day-to-day living for diagnosed persons is not coherent in practice. Inconsistencies also arise in the work of medical professionals in relation to diagnostic protocols, and a lack of clinics for adults leads to greater concern about standards of practice and consistency in diagnosis in Canada.

More recently, Sullivan (2008) focused on underlying vulnerabilities and problems in life adaptations, including “poor parental role modeling, disturbed development of trust and identity, patterns of avoidant coping behaviour, dysfunctional adolescent and adult relationships, and economic disadvantage” (p. 226). These concerns are realities for adults with the disorder and indeed pose challenges as intervention aimed at ameliorating these concerns is time-intensive and costly. A small literature is beginning to appear that focuses on the quality of life of individuals living with FASD, which may provide a fuller picture of what it means to live with FASD and how we can improve the quality of life for these children, adolescents and adults (Grant, Huggins, Connor & Streissguth, 2005; Stade, Stevens, Ungar, Beyene & Koren, 2006).

Since FASD has been identified as a health concern in Canada and other countries, the need to address the issue across the lifespan falls within the practice framework of health, social services and the community. Although FASD does not fit neatly into the adult world of developmental disability due to many of the inherent social problems and neurobehavioural problems associated with this diagnosis, consultation in relation to working with systems and supports for adults with disabilities can inform the development of service models.

Conclusions and Implications

The response to adult diagnosis has evolved but has been fragmented without a consistent framework in which to house diagnostic services. It is clear from this review that adult diagnostic resources are sparse, yet slowly evolving. We see examples such as the Lakeland Centre for FASD, the Asante Centre, the OBD Triage Institute (pre-screening for diagnostic referral), the FASD Community Circle and the Adult Assessment and Diagnostic Project in Western Canada. The only resource identified in Eastern Canada related to diagnosis of adults was located at St. Michael’s Hospital in Toronto. Motherisk, under the direction of Dr. Gideon Koren and colleagues, has been a leading resource in relation to the diagnosis of children and in the development of the International Journal of Fetal Alcohol Syndrome (now entitled the Canadian Journal of Clinical Pharmacology Incorporating Fetal Alcohol Research). Canada does have a research network known as FACE (Fetal Alcohol Canadian Expertise), which has been offering research roundtables since 2000. FACE partners include Health Canada’s First Nations and Inuit Health Branch, Public Health Agency of Canada, Government of Alberta, Government of British Columbia, the Brewers Association of Canada, and Motherisk. A systematic approach to adult diagnosis is not yet developed in Canada.

Canada, however, has demonstrated remarkable leadership in responding to the issue of FASD. The establishment of clinics for children should lead to the establishment of clinics for adults that are publicly funded in order to support individuals who do not have the resources to obtain a diagnosis on a fee-for-service basis. The potential exists for the costs of screening and assessment to put a fiscal strain on community-based agencies. However, publicly funded diagnosis is not consistently applied on a federal basis and discrepancies in the delivery of this service both in policy and practice should be addressed.

Referrals for adults would have to be restructured from the processes for children and strong screening protocols established for referrals to adult clinics. The potential for self-referral by adults is likely, as many may not be connected to agencies that might facilitate a screening/diagnostic referral. Following already established referral/screening/diagnostic protocols for children with some adjustments for adults would save time and fiscal resources in the development of adult clinics. As well, consultation with already established adult diagnostic resources would be useful to gain knowledge about their procedures and protocols.

Clearly, the need exists to respond to this issue, and the professional body of practitioners, family members and caregivers who support alcohol-exposed adults would benefit from diagnosis and follow-up services. However, the recognition of the desire and need for adult diagnosis raises concern about post-diagnosis. Does the infrastructure exist to offer follow-up services? How will this concern be addressed? This leads to the question of what a model of lifelong support looks like and raises another challenge in terms of response. Given that considerable expertise and support responses have been developed in relation to children, it is hoped that such expertise could extend to adulthood.

Another area that is important to consider is the development of case practice scenarios and models to develop a stronger knowledge base about referrals for screening/diagnosis for FASD in adults. Families, both foster and adoptive, have primarily raised their voices in relation to the needs of their FASD-diagnosed children as they made the transitions to adulthood. Concerns abound in the child welfare system that children will “age-out” of established supports and be left floundering as adults without an adequate support system, relying primarily on informal rather than formal services. Again, the knowledge that FASD is a lifelong disability raises a moral imperative about the provision of services post-diagnosis across the lifespan.

From a human rights perspective, it is critical to consider that the individual who has been diagnosed has a disability that in theory is preventable. However, the reality is that exigent circumstances exist that lead to the birth of children with FASD, including the possibility that mothers themselves may have been alcohol exposed and subject to intergenerational alcoholism, abuse and neglect. The argument of prevention presents a challenge when the lives of birth mothers are critically examined (Badry, 2008; Poole, 2003; Rutman, Callahan, Lundquist, Jackson & Field, 2000). Justice Canada has highlighted this issue and suggests that concerns exist from a human rights perspective due to the vulnerability of persons with FASD in society, including the risks of poverty, homelessness and conflict with the law. The implications of FASD from a human rights perspective requires further exploration.

Assessment and Diagnosis of FASD Among Adults: A National and International Systematic Review
Inventory of Literature on the Assessment and Diagnosis of FASD Among Adults

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