Chapter 4: Assessment and diagnosis of FASD among adults: a national and international systematic review – Conclusions and implications
The purpose of this literature review was to look specifically at the diagnosis and assessment of adults, the challenges, as well as promising techniques and tools used. The following sections will address the strengths and gaps in the literature. Practice, policy and research implications will provide directions for the future.
There is a sufficient body of biomedical research that explores the physical and physiological characteristics of individuals, including adults, living with FASD to produce objective, quantifiable measures of the anatomical abnormalities associated with FASD. However, the social science literature exploring the consequences (behavioural, cognitive and psychological) of these physical abnormalities is much more fragmented. A number of key deficit areas have been identified, but there is no consensus in the research or practice literature reviewed about how to measure these developmental and behavioural areas for alcohol-exposed individuals.
“I’m seeking an FASD screening tool/functional assessment for adults that will allow our frontline staff the ability to identify the strengths and deficits within their clients. Unfortunately I haven’t run across anything appropriate as of yet.”
This plea for assistance by an agency worker was received by Dr. Dorothy Badry in July 2008, and represents one of the major gaps in the literature on adult assessment and diagnosis of FASD. There are several promising tools or tools that have been used in a select setting that could, however, be adapted for more general screening situations.
Astley (2003) presented an argument for the need for “an accurate and reproducible method of diagnosis” in children (p. 2). In that argument, she raised a number of points that are as valid today in terms of the lack of clear and replicable adult diagnostic methods. Astley presented her arguments from three perspectives, and they have been adapted here with adults with FASD in mind. First, from a clinical perspective, the individual who may be misdiagnosed would receive inappropriate intervention and support, and be at increased risk for secondary consequences of FASD. From a public health perspective, true prevalence rates for FASD remain hidden when people remain undiagnosed or are misdiagnosed, which can lead to the thwarting of funds needed to deal adequately with the health care, social and educational needs of adults with FASD. Finally, from a clinical research perspective, inaccurate diagnosis reduces the ability of researchers and users of research to make meaningful comparisons between different groups, and
“non-standardized diagnostic methods prevent valid comparisons between studies,”
which would advance our research knowledge more fully (p. 2). Having a standard diagnostic method (as the 4-Digit Diagnostic Code has been for children) used in the assessment of adults would go a long way in countering these clinical, public health and research deficits.
While there are some suggestions for accurate screening and diagnostic methods based on those that have been successful with children and adolescents, to date there is no methodology in either screening or diagnostic method that is used across multiple practice or research situations.
There is limited information on the prevalence rates of FASD in adults. This is, in part, because there are no reliable biological markers that readily define those affected, especially with diagnoses other than FAS. Estimates of FAS occurrence vary from 1 to 4.8 per 1,000 live births and approximately 9 per 1,000 live births if all the diagnostic categories for FASD are included (Sampson et al., 1997). This is assumed to under-represent the actual incidence (Sokol, Delaney-Black & Nordstrom, 2008). The variability in rates is, in part, due to the lack of uniformity in what is accepted as the diagnostic criteria for those who lack the dysmorphic features – the high proportion of adults and children with ARND, for example.
The primary practice implication is the need for the development of consistent best practice models for screening, assessment and diagnosis specific to adults with FASD. With these in place, the identification of this population could then move into the implementation of programs and services that will provide the type and level of support needed by adults living with FASD, to promote optimal functioning and provide a better quality of life than is currently available to many alcohol-exposed people. For example, the World Health Organization Quality of Life scale is a 26-item assessment of quality of 24 life facets. This measure was used by Grant, Huggins, Connor and Streissguth (2005) to assess 11 women with an FASD diagnosis. Their findings indicated these women had a poor quality of life and higher levels of psychiatric distress and behavioural problems compared with other at-risk populations. Grant and colleagues assessed the quality of life scores of the women living with FASD to be similar to those of individuals living with a chronic illness.
It is a challenge to diagnose adults without an existing infrastructure in policy and practice that supports this community need. A focus on diagnosing children with FASD has raised awareness that similar needs exist for adults. One of the key issues for adults, particularly those “prenatal alcohol exposure requires confirmation of alcohol consumption by the mother” from homes where alcoholism was a serious issue, is that retrospective information regarding their own in utero history may not be readily available. Diagnostic guidelines clearly state that
“prenatal alcohol exposure requires confirmation of alcohol consumption by the mother”
(Chudley et al., 2007, p. S11). Discovering this information requires protocols that are sensitive to adults who have traumatic histories.
Another area that will affect practice is the development of support services specifically for adults living with FASD. These support services will be of increasing importance as more adults are diagnosed with FASD and those diagnosed as children and adolescents age. Stonehocker (2007) prepared an evaluation of an adult support coordinator program associated with the Lakeland Centre for FASD in Cold Lake, Alberta. She assessed client, caregiver, service provider, and systems outcomes. Gaps in services recognized through this evaluation were in the areas of supervised emergency housing, transportation, medical care, supported living, and transition planning to adult services. These issues can be addressed only with significant interaction and awareness with municipal authorities.
Educational programs for various professionals who might be involved in screening and referring adults for complete diagnostic assessment (e.g. primary care physicians and other health care professionals, educators, mental health professionals, social service workers and professionals in the justice system) must be developed. Sharpe et al. (2004) suggested the need to develop FAS regional training centres as well as educational curricula for medical and allied health professionals that incorporate evidence-based diagnostic guidelines for FASD. Increasing training could directly impact an increased capacity for screening, diagnosing and supporting adults living with FASD. This need is supported by a Canadian survey of pediatricians, psychiatrists, obstetricians, midwives and family physicians conducted by Clarke, Tough, Hicks and Clarren (2005). They recognized that “there is a great need to help providers recognize the primary and secondary disabilities of FASD especially in affected individuals who do not have mental retardation or dysmorphic features as part of their diagnosis” (p. 12).
Several training manuals and practical guidelines already exist (e.g. FAS at Street Level: Fetal Alcohol Spectrum Disorder and Homelessness (Stade, Clark & D’Agostino, 2004), Psychosocial Needs Associated with Fetal Alcohol Syndrome: Practical Guidelines for Parents and Caretakers (Ladue, 1993), Neurobehaviour in Adolescents and Adults (FAS Community Resource Center, n.d.), and Fetal Alcohol Spectrum Disorder: A Learning Module for Health and Social Service Workers (Capital Health Edmonton and Area, 2005). These could be used and other resources developed to increase awareness of FASD with a focus on the adult population. A secondary issue related to consistency of knowledge/education about FASD is that people have been informed differently through various educational opportunities related to FASD and may apply this knowledge differentially, thus causing inconsistencies in response to FASD.
Through our review of the literature in relation to adult diagnosis and assessment, it is evident that the issue of adult diagnosis is addressed in a limited fashion, that a consistent approach is difficult to identify, and that the financial infrastructure to support adult diagnostic clinics and teams do not presently exist in the public domain. Private clinics do exist that engage in adult assessment, such as the Asante Centre in British Columbia, The OBD Triage Institute and Medigene in Alberta, but the cost for the assessment is often in the range of $1,000 to $5,000 or more. Some clinics are able to fundraise or use research dollars to support the assessment process and thus do not have to pass the cost along to others. However, if accessible diagnosis is to be available, then more sustainable funding needs to be in place. If the provincial government strategic plans for “timely diagnosis, assessment and planning for children, youth and adults affected by FASD” (Fryer, 2005, p. 6) is to be fulfilled, then policy must direct that diagnostic services be covered by universal health care rather then left as a cost burden on the individual or his or her family .
This implication echoes and extends to adults the policy recommendation made by Pei and Rinaldi (2004):
“policymakers will need to recognize the extent of the resources required by children with FASD and their families, and provide the financial support necessary for the individualized intervention that is required”
(p. 135). For adults, the cost of assessment needs first to be financially covered by health care and the services provided to address the post-diagnosis intervention plan.
The following highlight several research ideas that need further development if the field of adult assessment and diagnosis of FASD is to advance. First, it would be extremely helpful to have a comprehensive survey of Canadian clinics and programs where adults are currently being assessed. This could be modelled after the FASD clinical capacity study of Clarren and Lutke (2008) but extend it to assess the capacity of all Canadian regions. Second, the use of the “policymakers will need to recognize the extent of the resources required by children with FASD and their families, and provide the financial support necessary for the individualized intervention that is required” Fetal Alcohol Behavior Scale (36-item FAS/FAE behavioural phenotype) as a screening tool or the development of another tool that is tested in a variety of clinical contexts could lead to a reliable and valid screening instrument with wide clinical application. This is a practice need that further research could help to fulfill.
A third area for further research exploration is that of gender differences in the symptomolgy and presentation of features of FASD in adults. A gender lens is critical as well as a trauma-informed response that recognizes the history of women who become birth mothers and may have an FASD. This would suggest that specific protocols for screening, assessment and diagnosis are sensitive to gender-based issues. A women-centred approach has been advocated through the FASD Network Action Team on women’s health and is seen as critical to the prevention of further births of children with FASD.
Another research trajectory could involve further investigation into the quality of life experienced by adults with FASD. Research to date has primarily focused on the physical, behavioural and cognitive aspects of this condition. The recognition that FASD impacts adult functioning could be further explored, and the assessment of the quality of life changes from pre- to post-intervention could serve as a measure of the effectiveness of the intervention strategies used following diagnosis of adults.
Canadian leadership in research as well as practice could be enhanced through Canadian longitudinal studies that determine potential changes over time. International research using longitudinal designs have focused on the physical characteristics and secondary conditions of individuals affected by FAS. The diversity of the Canadian landscape in terms of multicultural populations and rural-urban areas could advance our knowledge in areas such as prevalence rates and diagnostic characteristics reflective of this diversity.
The Canada Northwest FASD Research Network has established five Network Action Teams (NATS), each with a different focus, including diagnosis, clinical intervention for those with FASD, intervention from a women’s determinants of health perspective, primary prevention and mentoring.Footnote 4
Through this systematic review of the literature on adult diagnosis of FASD, it is clear that although the infrastructure does not exist within federal/provincial/territorial policy and practice frameworks, the need exists to establish services to address this need. The progress of work over the decades in relation to this topic has been remarkable, and addressing the phenomenon of FASD should be a primary concern in the public domain. Publicity about adults with FASD has often been negative and related to criminal or anti-social behaviour while reports of successful adults are limited. It is natural after the recognition of FAS/FASD in children that the field progress to a similar response for adults. We now recognize that FASD is a lifelong disability, and the need for consistent diagnostic resources, supports and response frameworks would benefit adults who remain undiagnosed. These individuals face their struggles often without knowing the cause of their challenges. They are left attempting to negotiate a world that does not know how to respond to individuals who “talk better than they do,” as Nathan Ory said in Yellowknife, NWT in 2005.
This review of the literature suggests a strong need for diagnostic resources for adults beyond those that currently exist. Those working with individuals who are alcohol exposed and not yet diagnosed have issued pleas for supports for these adults in conference presentations on FASD, in educational forums on FASD, on Listservs and chat rooms throughout the country and beyond. The voices of caregivers and families with the support of physicians, psychologists, social workers and health professionals have articulated the need for adult resources as knowledge grows about the complexities of FASD across the lifespan.
The implications related to this review in terms of adult diagnosis are that there is a consistent message emerging that such resources are both desired and required in communities and among professionals who engage with alcohol-exposed adults in need of both diagnosis and support. The knowledge garnered to date, which originated from the medical profession and was consequently disseminated to a wide variety of professional bodies for children, is a cornerstone for development of equivalent resources for adults. The justice system in particular has raised this concern as adults with suspected or diagnosed FASD enter their systems. Fast and Conry (2004) have taken up this topic as response models in this system develop. However, case models for practice are slow to develop despite the recognition of this need. As a result of this systematic review, a body of literature that was surprisingly rich exists, and a consistent response is coherent in terms of the need to establish in both policy and practice an adult diagnostic framework.
FASD is a human issue: it impacts the lives of individuals, families and communities. There are consequences in not recognizing FASD in individuals, including adults. These consequences include having individuals live in multiple living arrangements such as foster care and may contribute to becoming homeless or incarcerated (Chudley, Kilgour, Cranston & Edwards, 2007; Clarke, Tough, Hicks & Clarren, 2005; Dubovsky, 2008; Famy, Streissguth & Unis, 1998; Lemoine, 2003). Another consequence can be the inappropriate use of resources and approaches in treating individuals when FASD has not been recognized (Dubovsky, 2008). Employment and parenting difficulties may also plague adults who remain undiagnosed (Dubovsky, 2008; Famy, Streissguth & Unis, 1998). Suicide is also a very real possibility for adults and adolescents with FASD, especially if it remains undiagnosed (O’Malley & Huggins, 2005). The need to enhance the capabilities of assessment teams and centres to accurately assess and diagnose adults who potentially have some form of an FASD is a pressing problem in Canada and internationally.
Key strategies for intervention with adults diagnosed with FASD are emerging within the Canadian experience. First, there is a need to include trauma-informed practices with adults living with FASD, which implies the need for screening and diagnostic protocols that are sensitive to the needs of individuals. Second, the need exists for a greater understanding and careful assessment of addictions and substance abuse issues for undiagnosed adults. Third, ongoing knowledge development of adult-specific responses, particularly related to neurocognitive and neurobehavioural disorders, is needed. Understanding how adults with FASD process auditory information, for example, is a key point to develop better practice and offer a consistent framework of response across each province and territory. Accurate and effective diagnosis and intervention fosters healthier individuals, families and communities. Another key strategy would be to provide opportunities and the ability for adults with FASD to negotiate required supports in different systems. It is important that those working in the field with children, adolescents and adults with FASD become informed about the complexity of this disabling condition and develop models and frameworks of a complex case management response through the better use of case studies as learning opportunities. Knowledge exchange among different professions working in this area is another strategy that would provide a deeper understanding of the complexity of this disabling condition. For example, social workers need to know more about how to meaningfully interpret psychological evaluations while other professionals would benefit from a clearer understanding of the psychosocial implications of living with an FASD. This exchange would be helpful in advancing the knowledge base related to FASD if each of the disciplines involved leads to a better understanding of each other’s roles in the screening, assessment and diagnosis of FASD and a better informed professional response system. Additionally, it is important to strengthen the linkages between frontline workers and those engaged in diagnosis. Although adult diagnosis does occur in a fashion, there is a generalized perception that this is a service not available in Canada. Finally, strong advocates have emerged on the Canadian landscape to recommend adult diagnosis – Lutke, Clarren, Lawryk, McFarlane, Riley, and Ory for example. Let us build on their expertise and develop the next generation of researchers and practitioners who are knowledgeable about and sensitive to the experiences of adults living with FASD.
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