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Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada: 'It Wouldn't Happen if Nobody Wanted It to Happen'

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Title: Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada: 'It Wouldn't Happen if Nobody Wanted It to Happen'
Language: English
Authors: Kelly D. Harding (ORCID 0000-0001-8996-8058), Katherine Flannigan (ORCID 0000-0001-7230-2532), Colleen Burns, Kathy Unsworth, Audrey McFarlane
Source: Journal of Intellectual & Developmental Disability. 2026 51(1):115-125.
Availability: Taylor & Francis. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 11
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Tests/Questionnaires
Descriptors: Fetal Alcohol Syndrome, Clinical Diagnosis, Clinics, Program Development, Needs, Community Involvement, Teamwork, Coordinators, Cooperation, Foreign Countries
Geographic Terms: Canada
DOI: 10.3109/13668250.2025.2508619
ISSN: 1366-8250
1469-9532
Abstract: Background: We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success. Method: Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis. Results: We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. Conclusions: Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1505391
Database: ERIC
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  Value: <anid>AN0192006720;ddi01mar.26;2026Mar05.05:33;v2.2.500</anid> <title id="AN0192006720-1">Fetal alcohol spectrum disorder diagnostic clinics in Canada: "It wouldn't happen if nobody wanted it to happen" </title> <p>Background: We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success. Method: Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis. Results: We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. Conclusions: Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.</p> <p>Keywords: Intellectual disability; fetal alcohol spectrum disorder; assessment and diagnosis; qualitative; clinic; policy</p> <p>Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental disability affecting individuals who have been exposed to alcohol prenatally (Cook et al., [<reflink idref="bib5" id="ref1">5</reflink>]; Harding et al., [<reflink idref="bib20" id="ref2">20</reflink>]). FASD is one of the most common neurodevelopmental disorders in the western world, with newer North American estimates indicating that up to 8% of the population may be impacted by FASD (Flannigan, Cauduro, et al., [<reflink idref="bib10" id="ref3">10</reflink>]). Many individuals with FASD experience adversities such as trouble living independently and maintaining stable housing, mental health and substance use challenges, employment difficulties, legal issues, and school disruption (McLachlan et al., [<reflink idref="bib29" id="ref4">29</reflink>]). FASD is a unique and complex disability (Flannigan, Pei, McLachlan, et al., [<reflink idref="bib13" id="ref5">13</reflink>]) that often goes undiagnosed because of the presence of co-occurring conditions such as mental illnesses, behavioural disorders, substance use disorders, and other developmental needs. Access to early identification, diagnosis, and intervention are critical protective factors against many of the adverse outcomes that may be experienced by individuals with FASD across the lifespan (Rangmar et al., [<reflink idref="bib39" id="ref6">39</reflink>]; Streissguth et al., [<reflink idref="bib42" id="ref7">42</reflink>]; Temple et al., [<reflink idref="bib44" id="ref8">44</reflink>]). People with FASD have notable strengths, such as friendliness, helpfulness, perseverance, strong self-awareness, receptiveness to support, and capacity for human connection (Flannigan et al., [<reflink idref="bib12" id="ref9">12</reflink>]; Flannigan, Wrath, Ritter, et al., [<reflink idref="bib15" id="ref10">15</reflink>]). Incorporating these strengths into a balanced, human-centred approach to recognising and supporting individuals with FASD is essential in developing effective and meaningful interventions.</p> <hd id="AN0192006720-2">FASD assessment and diagnosis in Canada</hd> <p>Best practice for FASD assessment and diagnosis in Canada involves a comprehensive multidisciplinary assessment including a physical examination, differential diagnosis, and neurobehavioural evaluation (Cook et al., [<reflink idref="bib5" id="ref11">5</reflink>]). Assessment and diagnosis of FASD has been explored in Canada since the late 1980s and 1990s when initial research and clinical care centres were established (McFarlane, [<reflink idref="bib27" id="ref12">27</reflink>]). In 1999, several western provinces came together to begin addressing the needs of citizens with FASD, eventually expanding and becoming the Canada Northwest FASD Partnership. The Partnership kept each jurisdiction accountable for advancing FASD service delivery and prevention, and in the early 2000s prompted the idea of a national research network (Government of Saskatchewan, [<reflink idref="bib17" id="ref13">17</reflink>]; McFarlane, [<reflink idref="bib27" id="ref14">27</reflink>]). At the same time, many clinicians and service providers in Canada were raising the issue of FASD through public advocacy and conducting FASD assessments independently. In the late 1990s, communities across Canada began developing grassroots FASD services to meet their local needs (e.g., Asante Centre, [<reflink idref="bib1" id="ref15">1</reflink>]; Crawshaw, [<reflink idref="bib7" id="ref16">7</reflink>]; Hanlon-Dearman et al., [<reflink idref="bib18" id="ref17">18</reflink>]; Lakeland Centre for FASD, [<reflink idref="bib25" id="ref18">25</reflink>]; McFarlane, [<reflink idref="bib26" id="ref19">26</reflink>]; McFarlane & Rajani, [<reflink idref="bib28" id="ref20">28</reflink>]). National priorities for FASD were then identified by the Public Health Agency of Canada ([<reflink idref="bib38" id="ref21">38</reflink>]) and the first Canadian diagnostic guidelines were developed (Chudley et al., [<reflink idref="bib4" id="ref22">4</reflink>]).</p> <p>At time of writing, there were more than 75 FASD assessment and diagnostic clinics across Canada providing services for individuals with prenatal alcohol exposure (PAE) and FASD in nearly all provinces and territories. However, clinic capacity to meet the demand for FASD assessment and diagnosis, and for subsequent referral pathways to appropriate supports and services, remain limited (Dugas et al., [<reflink idref="bib8" id="ref23">8</reflink>]; Fitzpatrick et al., [<reflink idref="bib9" id="ref24">9</reflink>]; Harding et al., [<reflink idref="bib19" id="ref25">19</reflink>]; Popova et al., [<reflink idref="bib37" id="ref26">37</reflink>]). An estimated 98% of individuals with FASD go undiagnosed or misdiagnosed in Canada, and the annual FASD diagnostic capacity requires at least a 67-fold increase per year to meet clinical need (Popova et al., [<reflink idref="bib37" id="ref27">37</reflink>]). Given this high unmet need, FASD researchers, clinicians, service providers, and policymakers are interested in <emph>how</emph> to increase capacity for FASD services.</p> <hd id="AN0192006720-3">Current study</hd> <p>This study was part of a larger project conducted to understand the breadth of FASD diagnostic services in Canada (see Harding et al., [<reflink idref="bib19" id="ref28">19</reflink>]). In the broader project, information was gathered about the establishment, operation, and practices of a select sample of FASD diagnostic clinics. In the current study, we sought to address the question: If you wanted to start an FASD diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our specific aims were to understand: (i) how FASD diagnostic clinics are developed and established; and (ii) what are the key components, as identified by representatives of FASD diagnostic clinics, that facilitate the successful establishment and ongoing operation (e.g., current, future) of these FASD diagnostic clinics.</p> <hd id="AN0192006720-4">Method</hd> <p></p> <hd id="AN0192006720-5">Recruitment and participants</hd> <p>In collaboration with a community partner representative (CB), we used purposive sampling to generate a list of potential FASD clinics across Canada to recruit. Clinics were strategically identified to ensure broad representation from a diverse range of structures and settings. We aimed to identify clinics operating from varying models, including those housed within regional health authorities or government organisations, those focused on educational or outreach activities, community-based clinics, as well as not-for-profit and for-profit clinics. We also sought to achieve broad representation in terms of population demographics and regions across Canada.</p> <p>From a list of 11 potential clinics, 10 agreed to participate, and one did not respond. Ultimately, 12 key informants from 10 clinics participated in semi-structured interviews, including program managers, clinic coordinators, and core clinical team members. Four clinics were strictly paediatric, five served both children and adults, and one served only adult clients. Six clinics were in Western/Northern Canada and four were in Central/Atlantic Canada. Several clinics also served specialised populations including diverse Indigenous communities, francophone populations, and individuals involved in the criminal legal system (see Box 1).</p> <hd id="AN0192006720-6">Box 1.</hd> <p>Participating clinic demographics.</p> <p></p> <p> <ephtml> <table><thead valign="bottom"><tr><td>Clinic ID</td><td>Professions interviewed</td><td>Geographic region</td><td>Setting</td><td>Demographics Served<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>Range of number of assessments per year (Centre Size)</td></tr></thead><tbody><tr><td>1</td><td>Clinic coordinator; Social worker</td><td>Western/ Northern Canada</td><td>Urban</td><td>Adult</td><td><20</td></tr><tr><td>2</td><td>Clinic coordinator (registered nurse)</td><td>Central/ Atlantic Canada</td><td>Urban, Rural/Remote</td><td>Paediatric<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>20–50</td></tr><tr><td>3</td><td>Clinic manager (occupational therapist)</td><td>Western/ Northern Canada</td><td>Urban, Rural/Remote</td><td>Paediatric, Adult<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>>100</td></tr><tr><td>4</td><td>Clinic coordinator (social worker)</td><td>Western/ Northern Canada</td><td>Rural/Remote</td><td>Paediatric</td><td><20</td></tr><tr><td>5</td><td>Program manager</td><td>Western/ Northern Canada</td><td>Urban</td><td>Paediatric, Adult<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>20–50</td></tr><tr><td>6</td><td>Registered Psychologist</td><td>Central/ Atlantic Canada</td><td>Urban</td><td>Paediatric<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>20–50</td></tr><tr><td>7</td><td>Executive director; Social worker</td><td>Western/ Northern Canada</td><td>Urban</td><td>Paediatric, Adult<xref ref-type="table-fn" rid="tfn1">a</xref></td><td>>100</td></tr><tr><td>8</td><td>Clinic coordinator (social worker)</td><td>Central/ Atlantic Canada</td><td>Urban</td><td>Paediatric, Adult</td><td>50–100</td></tr><tr><td>9</td><td>Clinic coordinator (social worker)</td><td>Central/ Atlantic Canada</td><td>Rural/Remote</td><td>Paediatric, Adult<xref ref-type="table-fn" rid="tfn1">a</xref></td><td><20</td></tr><tr><td>10</td><td>Psychologist</td><td>Western/ Northern Canada</td><td>Rural/Remote</td><td>Paediatric<xref ref-type="table-fn" rid="tfn1">a</xref></td><td><20</td></tr></tbody></table> </ephtml> </p> <p>1 Several clinics serve more specialised populations including Francophone communities, Indigenous communities, and justice-involved individuals. The clinics that serve a specialised demographic are indicated in the box above. However, we have not identified which of these specific populations they each serve to protect participant anonymity.</p> <hd id="AN0192006720-7">Qualitative interviews</hd> <p>This study was embedded within a pragmatist epistemology (Kelly & Cordeiro, [<reflink idref="bib22" id="ref29">22</reflink>]), which is based on three core principles: (i) emphasis on actionable knowledge; (ii) recognition of the interconnectedness between experience, knowing, and acting; and (iii) inquiry as an experiential process. Pragmatism focuses on the practical understandings of real-world issues (Morgan, [<reflink idref="bib31" id="ref30">31</reflink>]), such as decision-making processes and policy implications. In line with this epistemology, we conducted a basic qualitative study (Merriam & Tisdell, [<reflink idref="bib30" id="ref31">30</reflink>]) using semi-structured interviews. Our inteview guide consisted of 10 open-ended questions (see the Appendix) designed to understand the history of each diagnostic clinic, their current model or structure of operation, their strengths and challenges in establishing and maintaining clinic operations, and their suggestions for developing future diagnostic clinics.</p> <p>Ten interviews were conducted over Zoom by the principal investigator (KH), supported by the community partner representative (CB), between January and March 2021. Interviews lasted between 60 and 90 min and were recorded and transcribed verbatim for analysis. A small incentive was offered for their participation that included their choice of a recently published academic book on FASD (i.e., <emph>Prenatal Alcohol Exposure: A Clinician's Guide</emph> or <emph>Youth in Care Chronicles: Reflecting on Growing Up in the Child Welfare System</emph>), valued at approximately $100 CAD.</p> <hd id="AN0192006720-8">Data analysis</hd> <p>In line with our pragmatist philosophical underpinning, we analysed our data using Morgan and Nica's ([<reflink idref="bib32" id="ref32">32</reflink>]) iterative thematic inquiry (ITI). ITI is a qualitative analysis approach based on an active and ongoing search for themes throughout the entire research process. From this perspective, a theme is "a meaningful, recurring pattern that researchers first develop from the data, and then use to interpret that data for an audience" (Morgan & Nica, [<reflink idref="bib32" id="ref33">32</reflink>], p. 2). A key component of ITI includes the active role of the researcher(s) in developing themes as patterns in the data and communicating those patterns to their intended audience (e.g., policymakers, researchers). ITI follows four basic phases including: (i) assessing initial beliefs as themes; (ii) building new beliefs during data collection; (iii) listing tentative themes; and (iv) evaluating themes through coding. As per these guidelines, the analysis process began with our set of preconceptions that we brought to the research topic, which we contintually updated throughout the data analysis process (e.g., that policymakers would like a simple, formulaic approach to establishing FASD clinics).</p> <p>We acknowledge our active role in this iterative process and the themes generated in this paper, as well as how our knowledge, expertise, and biases as researchers, clinicians, and frontline service providers with varying personal and professional experiences relative to FASD and FASD assessment and diagnosis shaped our evolving understanding of our data. Our interdisciplinary team was made up of researchers, clinicians, and practitioners with backgrounds in interdisciplinary studies, psychology, health service delivery, health policy, public health, and social work. We are mindful of our active role in the research process including our choice of key informants, the development of our interview guide, and our preconceived beliefs relative to our research objectives and expected findings. This iterative process included alternating between data collection and data analysis to ensure continual engagement with our research team's beliefs about the research topic and questions, and to provide space for the co-construction of our beliefs together as a team. We also iterated on theme development by obtaining feedback from participants who provided comments on their transcripts as well as on our working and revised themes.</p> <hd id="AN0192006720-9">Ethical considerations</hd> <p>Ethical approval for this study was received from the Laurentian University Research Ethics Board (REB #6020878). Written informed consent was obtained from all participants. To ensure anonymity and confidentiality, all identifying information was removed.</p> <hd id="AN0192006720-10">Results</hd> <p>Our analysis derived five themes pertaining to our guiding research objectives of understanding how FASD diagnostic clinics are developed and established and exploring key components that facilitate the successful ongoing operation of these clinics: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. These themes are relevant at all stages of clinic establishment and maintenance, however, for clarity, they are organised chronologically in terms of getting started, ongoing success, and looking ahead.</p> <hd id="AN0192006720-11">Getting started</hd> <p></p> <hd id="AN0192006720-12">Listening and responding to your community</hd> <p>Participants described their unique histories regarding how their clinics were initially established, run, and changed over time. Every participant emphasised that the establishment of their clinic came from an identified need that was <emph>always</emph> driven by the community. Participants often noted that community need was directly related to "the dearth of services and awareness" in the local community including the perceived lack of resources, knowledge, and awareness to identify and support people with FASD and other complex neurodevelopmental needs. As one participant emphasised, "There was absolutely no supports, there were no assessments, the only assessment clinic who would do adults was in [a major metropolitan city] and I just couldn't sit back and tolerate that." Many individuals involved in the initial clinic development and advocacy had an interest in FASD because they felt that nothing was currently happening locally to address this need.</p> <hd id="AN0192006720-13">Community buy-in and practical steps</hd> <p>Once a community need was identified, participants described the involvement of diverse interest holders, such as research organisations, local educational institutions, as well as local disability and health supports and services. As one participant noted, it was important to get "the right people together to have these conversations." Another participant shared how they engaged in community focus groups where they asked questions such as "Should there be a clinic? Where should the clinic be? What would it do? How would it operate?" Some clinics engaged in asset mapping in their community, while others developed their clinic through a health centre funded by the federal government. As one participant noted, they "needed to start somewhere" in garnering feedback from community members who would be involved in the clinic and its services.</p> <p>Participants also described the varied resources, funding avenues, and practical resources supplied by members of their community at start up, including space to house the clinic, funding, or inter-clinic relationships for mentorship and guidance. One participant noted, "They [organisation] gave me pro-bono office space for a year, and we got started" and another described being provided funding for travel costs for out-of-town clients, assessments, in-kind services from some specialists on the multidisciplinary team, and financial support from different health and government departments to cover staff salaries. For all clinics, community and policymaker buy-in was essential, as one participant explained, "It wouldn't happen if nobody wanted it to happen." Participants went on to describe factors that enabled clinics to build and maintain ongoing success and operations. Early maintenance was described as an ongoing trial and error experience, as one participant joked, "I don't think we really quite knew what (<emph>laughs</emph>), what we were doing at the very beginning. But it's really worked well."</p> <hd id="AN0192006720-14">Ongoing success</hd> <p></p> <hd id="AN0192006720-15">Multidisciplinary team trust, respect, and collaboration</hd> <p>The ongoing success and operation of FASD assessment and diagnostic clinics were often described as being the direct result of "the strength of the team that comes together." Many participants described how their clinic had maintained the same multidisciplinary team over a very long period, noting that, "We've been able to keep the same consistent assessment team so that tells me we're doing something right." Participants emphasised the critical importance of having the "right people" on the team to establish trust and relationship building, which in turn promoted team cohesion and interprofessional teamwork. Participants described the ecological layers of trust, emphasising its necessity among clinic team members, supervisors, the community, partners, and among individuals with FASD and their families. As one participant explained, "There's a lot of families ... they were let down by so many services before that, they [do not] trust ... so we start building that relationship."</p> <p>Participants from many clinics described that assessment and diagnosis were just the "tip of the iceberg" of services. They discussed their expanded roles within their respective communities, including providing public education and training, collaborating with other community organisations and supports, and providing post-assessment follow up services. Participants emphasised that team cohesion, interprofessional collaboration, and shared understandings and philosophies were needed to fulfil these varied roles. According to several participants, understanding the role of other members allowed them to respectfully challenge one another when appropriate, as well as to collaborate on the assessment process. As one participant described, "People who have the same commonality in terms of what they're looking for ... what their goal is .... I think that the appreciation of each other's role and how they can help each other, ... that's the key part." Another participant shared a similar point that spoke to the collaborative nature of assessment, noting, "The team members not only understand each other's roles and their own but have that trust to bring up information that might fall outside of their written role ... and that's something [we] do quite naturally."</p> <p>Because of team longevity, some participants commented on the taken-for-granted nature of their success. As one participant stated, " ... it's just what people do here, right, that I forget it doesn't always exist like that everywhere else." Relatedly, several participants emphasised the need for strong team cohesion describing, "We've tried out a few [professionals] to sort of back up the person that originally started with us and it just didn't work .... If you throw somebody in there that just doesn't fit with the chemistry, it just messes everything up." Other participants underscored the importance of dedicated team building by explaining that it was sometimes not a priority in their clinic and something that they "didn't do enough of." This intentional, dedicated time was described as essential in facilitating communication and trust among team members to keep "your team strong and make you want to do that work together" and encourage discussions about how to "do things better."</p> <hd id="AN0192006720-16">The clinic coordinator</hd> <p>For many clinics, team cohesion was perceived as critically dependent on the clinic coordinator or lead, largely related to the personal characteristics of the individuals fulfilling that role. As one clinic coordinator stated, "I was the fabric softener of the group." Clinic coordinators were often described as the most significant person of some clinics, as they are a "constant person that doesn't change" for families and are outspoken, motivated, and passionate advocates who hold a desire to "make things better" for individuals with FASD and their families.</p> <p>Clinic coordinators were identified as holding critical knowledge about both "soft" and "hard" clinic processes, especially on days when clinicians conducted FASD assessments. For example, participants described how clinic coordinators knew what rooms to book for testing and remembered dietary restrictions of team members. Participants reflected that this kind of knowledge may seem "insignificant to some in terms of the big picture" but also that "the big picture wouldn't happen if all the little, small details were missing." As this participant went on to state, "the coordinator ... has been the knowledge keeper, they know the ins and outs of everything so if someone leaves, that'll all work itself out but if the coordinator [leaves] ... [they] seem to hold all of how it's done." Further highlighting the important role of the clinic coordinator, participants shared their fears for the clinic if the coordinator were to leave, for example questioning how they could "replace somebody with 11 years of knowledge."</p> <hd id="AN0192006720-17">Looking ahead</hd> <p></p> <hd id="AN0192006720-18">Promoting uniqueness and learning from each other</hd> <p>When it came to the future of FASD clinics, many participants reflected on their clinic's history, progress, and individual circumstances to offer recommendations to others who may be thinking about starting a clinic. All participants reported that there is no one-size-fits-all approach to FASD assessment and diagnosis. As one participant remarked, "I wish it would be really easy to just have a template and just do this, this, this, this, and this and then we're done but there's not because they're all different." Each clinic was described as needing to "be their own" and to find the model or approach that best suits the clinic and community need. For example, one participant who was part of an independent clinic noted that they did not "want to be underneath anybody, I want to be our own." However, a different participant shared that being situated within a health authority provided them with piece of mind "since we were able to be in a secured place where we know that, you know, [they're] not going to go bankrupt." This diversity of clinic approaches held space for varied community needs, availability of resources, and team members.</p> <p>Many participants wanted to offer words of wisdom to future clinics, rooted in solid FASD knowledge and lifelong learning. Participants described the importance of "changemakers" such as school principals, teachers, justice workers, social development professionals, and child welfare workers. They also highlighted the need for having interest holders around the table from the "get-go" to "post-diagnosis" and encouraging the involvement of people with a wide range of experiences and backgrounds such as Elders, individuals with living experience, and mentors with knowledge of their communities. One participant described that it was critical for new clinics to "learn from what other clinics are doing .... Nobody has to reinvent the wheel." Participants also recommended being open to new opportunities and experiences, being "patient," building a support team, starting slow, and being willing to "open doors and get money." Overarching these specific recommendations, participants always circled back to the central thread that each clinic needs to be unique. As one participant ultimately summed up, "You couldn't make a model that would fit everything ... it's going to have to build on what's already there. ... If you have the right kind of folks that were inspired to do it, I think you could pull it together."</p> <hd id="AN0192006720-19">Discussion</hd> <p>The results of this study emphasise several important considerations regarding the development and ongoing operation of FASD diagnostic clinics. One of the most significant take home messages from our participants was that each FASD diagnostic clinic needs to be their own, responding to the unique needs of the community in which they are situated, which is consistent with previous research (Dugas et al., [<reflink idref="bib8" id="ref34">8</reflink>]; Flannigan, Edwards, et al., [<reflink idref="bib11" id="ref35">11</reflink>]; Flannigan, Wrath, McFarlane, et al., [<reflink idref="bib14" id="ref36">14</reflink>]; Harding et al., [<reflink idref="bib19" id="ref37">19</reflink>]; Panton et al., [<reflink idref="bib34" id="ref38">34</reflink>]). In Canada, there is no overarching authority that funds FASD diagnostic clinics and so, out of necessity, clinics have developed varied community-driven services. This approach aligns with Australian research, where different approaches to clinic models were reported to depend on unique community needs and factors (Panton et al., [<reflink idref="bib34" id="ref39">34</reflink>]). Relatedly, in a recent Canadian study on clinical capacity (Dugas et al., [<reflink idref="bib8" id="ref40">8</reflink>]), researchers demonstrated the variability in clinic structure and funding landscape for FASD diagnostic services with regional differences with respect to in-kind donations, private funding, and federal funding. Funders and policymakers are important advocates and gatekeepers for the public and for service providers when establishing new FASD clinical services and community and policy buy-in is necessary to ensure clinic success (Cook et al., [<reflink idref="bib5" id="ref41">5</reflink>]).</p> <p>As identified by our participants, important decisions and considerations for FASD diagnostic services include: what model to use; how to recruit team members who are a "good fit" for the team and community; the value of creating common understanding, vision, philosophy, and principles of operation; the need for consistent approaches; and the importance of recognising and valuing clinic team cohesion, development, relationships, and trust. In other research, clinicians' attitudes have been identified as a key factor in FASD diagnostic clinic success (Panton et al., [<reflink idref="bib34" id="ref42">34</reflink>]). Positive attitudes including enthusiasm, proactive response, active involvement, good team leadership, and lobbying hard for funding can be promotive of clinic success (Harding et al., [<reflink idref="bib19" id="ref43">19</reflink>]; Panton et al., [<reflink idref="bib34" id="ref44">34</reflink>]). For individuals with FASD specifically, clinicians' attitudes are a critical factor in access to a formal diagnosis, with accurate and timely diagnosis being imperative to informing clinical care, promoting healthy outcomes, and informing future research and prevention strategies (Pei et al., [<reflink idref="bib36" id="ref45">36</reflink>]; Reid et al., [<reflink idref="bib40" id="ref46">40</reflink>]). While limited research has explored the experiences of diagnostic clinics or multidisciplinary teams in the context of clinic success, researchers who have explored the lived experience of the diagnostic process for individuals and families with FASD have identified the importance of validating pre-assessment concerns and challenges, providing a safe and supportive environment during the diagnostic process, and promoting hope for the individual and family post-diagnosis alongside recommendations for support (Chamberlain et al., [<reflink idref="bib3" id="ref47">3</reflink>]; Hayes et al., [<reflink idref="bib21" id="ref48">21</reflink>]). The diagnostic process can be an extremely stressful experience for families (Watson et al., [<reflink idref="bib45" id="ref49">45</reflink>]) but this process can be made easier and more supportive by having a cohesive multidisciplinary team that employs a shared vision and implements client-centred approaches.</p> <p>Outside the FASD literature, the concept of cohesion is central to understanding groups and group processes and can include components such as "sticking togetherness," feelings of belongingness, shared understandings of roles, and good teamwork (Forsyth, [<reflink idref="bib16" id="ref50">16</reflink>]; Schachter et al., [<reflink idref="bib41" id="ref51">41</reflink>]). Our findings similarly suggest that for multidisciplinary FASD diagnostic teams, clear roles should be established for each team member, and there must be shared understanding of one's individual role on the team as well as one's role in relation to other professionals. This clarity, along with respect for each member's roles and responsibilities and opportunities to challenge one another when appropriate, are essential in developing trust, creating shared goals, and strengthening cohesion.</p> <p>Across various sectors, key principles of interdisciplinary and multidisciplinary teams include identifying specific aims and goals; choosing participants in the team with the appropriate skill sets and attitudes; considering diverse perspectives in collaboration; team leadership, mentorship, and training; trust, cohesion, and human connection; communication; and personal bonds (Brown et al., [<reflink idref="bib2" id="ref52">2</reflink>]; Nguyen & Mougenot, [<reflink idref="bib33" id="ref53">33</reflink>]). Our participants similarly explained that taking the time to build and maintain strong personal and professional bonds among diagnostic team members is critical to the operation of FASD assessment and diagnostic clinics.</p> <p>Clinic coordinators were frequently identified in this study as being crucial members of the team. They are often described as the "fabric softener" or the "wedding planner" that holds the clinic together. As has been shown in other research, the clinic coordinator is vital in gathering background clinical information; communicating and liaising with agencies, communities, and families; managing the multidisciplinary team, case conferencing, and the logistics required during the assessment and diagnostic process; collecting PAE and other assessment information; and other "behind the scenes" work (King et al., [<reflink idref="bib24" id="ref54">24</reflink>]; McFarlane, [<reflink idref="bib26" id="ref55">26</reflink>]; Panton et al., [<reflink idref="bib34" id="ref56">34</reflink>]; Temple et al., [<reflink idref="bib43" id="ref57">43</reflink>]). This coordination and administrative support are important for clinic sustainability, without which FASD clinic models could not succeed (Panton et al., [<reflink idref="bib34" id="ref58">34</reflink>]). This finding also speaks to the importance of ensuring that clinic coordinators are adequately prepared for, trained, supported, and valued in their role with the diagnostic clinic, and that appropriate transitional planning is undertaken to support and mentor new coordinators into the role.</p> <hd id="AN0192006720-20">Limitations, considerations, and future directions</hd> <p>Since the time of data collection for this study, new diagnostic clinics have been established, and other diagnostic clinics have closed. These interviews were also conducted at a time of global uncertainty because of the COVID-19 pandemic, requiring many clinics to adjust and adapt services, including the movement from in-person to virtual approaches (King et al., [<reflink idref="bib24" id="ref59">24</reflink>]). We believe that the ability of interviewees to still participate in this study at such a time demonstrates their resiliency and adaptation. However, given these factors, it is important to acknowledge that substantial changes may have occurred since the time we conducted these interviews, and more current interviews could reflect updates and changes in clinic operations. Additionally, the clinics invited to participate in this study were strategically selected and recruited using purposive sampling. This approach allowed us to represent varying clinic structures, geographic locations, and demographics to capture a diversity of perspectives. However, other approaches, such as random sampling or inviting all diagnostic clinics to participate, may provide space for understanding the unique and varied diagnostic clinic processes and capacity across the country (Dugas et al., [<reflink idref="bib8" id="ref60">8</reflink>]). Using purposive sampling may have led to bias in our results, particularly towards the idea that there is no "one size fits all" model for diagnostic clinics. Although our approach allowed us to sample different types of clinics, we inevitably achieved this response bias in our results. Research with more FASD diagnostic clinics would help to identify important similarities and differences across different groupings of clinic models. Similarly, further insights into other clinic models could identify opportunities for support and mentorship among existing FASD clinics and guide how clinics are faring with the changing landscape of FASD assessment and diagnosis in Canada, alongside continued funding demands for sustainability. Our study is the first, to our knowledge, to explore clinic practice and policy implications in Canada. Alongside the limited existing research on FASD diagnostic clinics in Canada and internationally (e.g., Dugas et al., [<reflink idref="bib8" id="ref61">8</reflink>]; Kent et al., [<reflink idref="bib23" id="ref62">23</reflink>]; Panton et al., [<reflink idref="bib34" id="ref63">34</reflink>]; Panton et al., [<reflink idref="bib35" id="ref64">35</reflink>]; Popova et al., [<reflink idref="bib37" id="ref65">37</reflink>]; Temple et al., [<reflink idref="bib43" id="ref66">43</reflink>]), we hope that our study offers a starting point for other researchers to further explore additional FASD clinics.</p> <p>Our study sample also included a range of interviewees who had varying professional roles. Specifically, three participants were managers or directors, four participants were clinical team members (i.e., social worker, psychologist), and five participants were clinic coordinators, and, as such, this sample does not reflect the heterogeneity of diagnostic teams (Cook et al., [<reflink idref="bib5" id="ref67">5</reflink>]). Future research involving additional diagnostic team members, such as speech language pathologists, occupational therapists, nurses, and physicians, would garner a more comprehensive perspective on the operation and management of FASD diagnostic clinics. It is also important to note that the perspectives of clinic coordinators or managers may differ from the perspectives of team members. That said, our study provides some evidence of consensus across administrative and clinical team members. Additionally, in two interviews, multiple members of the clinic team requested to be interviewed together. It is important to acknowledge that our results may have differed had we interviewed whole clinical teams together, as opposed to a single or dual representative(s) of each clinic site. Future research exploring FASD diagnostic clinics should consider interviewing team members together, especially considering the significance of team cohesion in the successful establishment and operating of clinics.</p> <p>Similarly, our study design and choice to analyse our data using iterative thematic analysis led to findings that predominantly support the recommendations in the Canadian guideline for FASD (Cook et al., [<reflink idref="bib5" id="ref68">5</reflink>]). Though our findings were co-constructed based on our own beliefs and experiences, we were still struck by some of our key takeaways, particularly the ecological significance of the "human element" in FASD assessment and diagnosis across multiple domains (e.g., community advocacy; passion and drive to establish FASD clinical services; valuing making lives better for people with FASD; finding the right "fit" of multidisciplinary team members; etc.). These findings identify psychosocial factors that may be hard for policymakers to quantify when funding FASD assessment and diagnostic clinics and speak to the need for bottom-up approaches that value community needs and advocacy alongside mentorship from existing FASD clinics. Additionally, while it is not surprising that many participants emphasised the importance of the clinic coordinator role, it is notable how much respect, value, and reverence participants held for coordinators and the work they do. However, as previously described, it is possible that our selection of interviewees influenced our data, particularly the confirmation and consistency of findings across interviews. Interviewing a diverse range of diagnostic clinics and clinic team members may provide further disconfirming perspectives about some of our conclusions here.</p> <p>Finally, our study was limited to the perspectives of service providers. Future research exploring the voices and experiences of individuals directly impacted by FASD assessment and diagnosis would be helpful in better understanding and improving the FASD diagnostic process for service users (Hayes et al., [<reflink idref="bib21" id="ref69">21</reflink>]). Perspectives from clinics about their own successes and challenges should be considered alongside feedback from clients and families to understand whether and how services are effectively meeting the unique needs of their communities.</p> <hd id="AN0192006720-21">Implications for research, policy, and practice</hd> <p>This study, alongside our research on clinic strengths and challenges (Harding et al., [<reflink idref="bib19" id="ref70">19</reflink>]), is important for advancing research, policy, and practice for FASD clinical services. We believe that FASD diagnostic clinics should be encouraged to document and publish their histories and processes to share their models' challenges and successes with others. Various clinicians and researchers have published this kind of research over the past two decades (see, for example, Cox, [<reflink idref="bib6" id="ref71">6</reflink>]; Flannigan, Edwards, et al., [<reflink idref="bib11" id="ref72">11</reflink>]; King et al., [<reflink idref="bib24" id="ref73">24</reflink>]; McFarlane, [<reflink idref="bib26" id="ref74">26</reflink>]; McFarlane & Rajani, [<reflink idref="bib28" id="ref75">28</reflink>]; Temple et al., [<reflink idref="bib43" id="ref76">43</reflink>]). Individuals in other countries have also begun to publish on their models, such as Weinmann et al. ([<reflink idref="bib46" id="ref77">46</reflink>]) in Germany. Understanding the diversity of possible clinic models can provide important insights into preexisting systems and professionals who could support clinic establishment, operation, and ongoing success across settings (Kent et al., [<reflink idref="bib23" id="ref78">23</reflink>]).</p> <p>Specific information regarding resource requirements and implications of FASD assessment and diagnosis can also be useful in guiding policy, practice, and the allocation of public health funding (Kent et al., [<reflink idref="bib23" id="ref79">23</reflink>]). In a Canadian context, this information is important for continuing to build FASD clinical capacity, including establishing more clinics and expanding current clinics to assess more clients. Stability and consistency of funding is of the utmost importance, as the uncertainty of core funding over multiple years is a major challenge to ongoing operational success of many clinics (Harding et al., [<reflink idref="bib19" id="ref80">19</reflink>]). Clinics who identified stable, long-term financial support felt increased efficacy in their ability to continue providing high-quality FASD assessment and diagnostic services (Harding et al., [<reflink idref="bib19" id="ref81">19</reflink>]). This stability allows clinics to focus on assessment and diagnosis services for their community without having to put additional time, effort, or concern into fundraising for core services and searching for funders every year or few years.</p> <hd id="AN0192006720-22">Conclusion</hd> <p>This study has advanced the understanding of FASD assessment and diagnostic clinic establishment, operation, and recommendations for the future with implications for practice and policy. Our findings demonstrate the importance of local, community-based planning, team cohesion and teamwork, including the essential role of the clinic coordinator, and opportunities for established clinics to mentor and share knowledge with new and evolving clinics. The findings presented here indicate priority areas for policymakers to consider when establishing new FASD diagnostic clinics. These are essential for addressing the urgent need for increased clinical capacity for FASD assessment and diagnosis in Canada and elsewhere.</p> <hd id="AN0192006720-23">Acknowledgements</hd> <p>The authors of this study would like to acknowledge and thank the 12 participants who graciously shared their time and experiences with us. The authors would also like to acknowledge and thank the Lakeland Centre for Fetal Alcohol Spectrum Disorder for their support of this work and their assistance with identifying the key informants approached for participation in this study. The authors would also like to further thank Ms. Alicia Groom for her assistance on this project.</p> <hd id="AN0192006720-24">Data availability statement</hd> <p>The datasets presented in this article are not readily available because the participants of this study did not agree for their data to be shared publicly. Requests to access further information about this study should be directed to the principal investigator, kelly.harding@canfasd.ca.</p> <hd id="AN0192006720-25">Disclosure statement</hd> <p>No potential conflict of interest was reported by the author(s).</p> <hd id="AN0192006720-26">Appendix. Semi-structured interview guide for Canadian FASD diagnostic clinics</hd> <p></p> <ulist> <item> 1. Tell me about the history of your diagnostic clinic.</item> <p></p> <item> a. <emph>Follow-up</emph>: How did your clinic come to be?</item> <p></p> <item> b. <emph>Follow-up</emph> (<emph>History</emph>): How many years has your clinic been operating for? How has this changed over the years?</item> <p></p> <item> 2. Please tell me about the population that you serve at your diagnostic clinic.</item> <p></p> <item> a. <emph>Prompts</emph>: Population/community served? Age group your clinic serves (i.e., birth to age of majority; youth only; both youth and adults; adults only; justice; etc.)?</item> <p></p> <item> b. <emph>Follow-up</emph> (<emph>Demographics</emph>): What geographic region do you serve? How many clients do you see a year?</item> <p></p> <item> 3. How does your clinic currently operate/run? What is the umbrella or agency that your clinic operates under? (i.e., health region; not for profit; justice; etc.).</item> <p></p> <item> a. <emph>Follow-up</emph>: How is your clinic currently funded? What is the management structure? Who is the clinic "answerable" to? Who do you report to? Who provides oversight of your clinic?</item> <p></p> <item> 4. What was the biggest challenge or obstacle to get FASD assessment and diagnosis clinic services operating in your region (e.g., funding, finding clinicians, community/stakeholder engagement, support)?</item> <p></p> <item> a. <emph>Follow-up</emph>: How did you overcome these challenges?</item> <p></p> <item> b. <emph>Follow-up</emph>: What are the biggest challenges still facing your clinic today?</item> <p></p> <item> 5. How do you engage with the community you support?</item> <p></p> <item> a. <emph>Follow-up</emph>: Tell me about any community partnerships related to your diagnostic clinic.</item> <p></p> <item> b. <emph>Follow-up</emph>: Does your clinic provide follow up support? If so, what does this look like?</item> <p></p> <item> 6. Do you receive any in-kind or partial in-kind contributions from agencies, professionals on your team, or those doing assessments? (e.g., speech language pathology or occupational therapy assessment and clinic presence from health region, school, child development centres, etc.)?</item> <p></p> <item> a. <emph>Follow-up</emph>: If so, please explain how this works.</item> <p></p> <item> 7. What do you consider to be the biggest strengths of your clinic?</item> <p></p> <item> 8. Does your clinic use any virtual or telehealth platforms to complete any of the assessment or diagnostic clinic processes? If so, how is telehealth used and implemented at your clinic?</item> <p></p> <item> a. <emph>Prompt</emph>: What parts of the assessment and diagnostic processes are completed using telehealth? For example, interviews, clinician assessments, diagnostic formulation, caregiver/client debriefs, etc.?</item> <p></p> <item> 9. 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  Data: Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada: 'It Wouldn't Happen if Nobody Wanted It to Happen'
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  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Kelly+D%2E+Harding%22">Kelly D. Harding</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-8996-8058">0000-0001-8996-8058</externalLink>)<br /><searchLink fieldCode="AR" term="%22Katherine+Flannigan%22">Katherine Flannigan</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-7230-2532">0000-0001-7230-2532</externalLink>)<br /><searchLink fieldCode="AR" term="%22Colleen+Burns%22">Colleen Burns</searchLink><br /><searchLink fieldCode="AR" term="%22Kathy+Unsworth%22">Kathy Unsworth</searchLink><br /><searchLink fieldCode="AR" term="%22Audrey+McFarlane%22">Audrey McFarlane</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+%26+Developmental+Disability%22"><i>Journal of Intellectual & Developmental Disability</i></searchLink>. 2026 51(1):115-125.
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  Data: Taylor & Francis. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
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  Label: Peer Reviewed
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  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2026
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  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research<br />Tests/Questionnaires
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Fetal+Alcohol+Syndrome%22">Fetal Alcohol Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Clinics%22">Clinics</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Development%22">Program Development</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Involvement%22">Community Involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Teamwork%22">Teamwork</searchLink><br /><searchLink fieldCode="DE" term="%22Coordinators%22">Coordinators</searchLink><br /><searchLink fieldCode="DE" term="%22Cooperation%22">Cooperation</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22Canada%22">Canada</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.3109/13668250.2025.2508619
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1366-8250<br />1469-9532
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success. Method: Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis. Results: We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. Conclusions: Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.
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  Data: As Provided
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  Data: 2026
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  Label: Accession Number
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  Data: EJ1505391
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        Value: 10.3109/13668250.2025.2508619
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      – Text: English
    PhysicalDescription:
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        PageCount: 11
        StartPage: 115
    Subjects:
      – SubjectFull: Fetal Alcohol Syndrome
        Type: general
      – SubjectFull: Clinical Diagnosis
        Type: general
      – SubjectFull: Clinics
        Type: general
      – SubjectFull: Program Development
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      – SubjectFull: Foreign Countries
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      – SubjectFull: Canada
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      – TitleFull: Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada: 'It Wouldn't Happen if Nobody Wanted It to Happen'
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