People with FASD possess important strengths in the context of mental health support including strong self-awareness, receptiveness to support, capacity for human connection, perseverance through challenges, and hope for the future1. These strengths can be used in the context of support for mental health challenges which are often a prominent difficulty for people with FASD. Understanding mental health from an FASD-informed perspective will allow you to better understand the strengths and challenges of your clients and respond to every person’s unique complexities. This section will discuss:
What is Mental Health?
Mental health has been defined in a myriad of ways and has traditionally been viewed in a medical and deficit-focused way. This understanding has impacted the ways people who struggle with mental health challenges are treated by professionals and society, as well as the supports that are made available for people. However, mental health is more than just having a diagnosis, and the current definition from the World Health Organization captures this:
This definition makes it clear that mental wellbeing is more than just the absence of a mental health diagnosis or disorder. Instead, it includes quality of life and wellness considerations to support people to be resilient and fulfilled. In essence, mental health, or mental wellbeing, can be identified as encompassing the biological, psychological, social, and environmental factors that influence our daily functioning. In expanding our understanding of what mental health involves, we become better equipped to support the multiple aspects of one’s wellbeing2. For people with FASD, this shift in understanding can help us to provide a more holistic approach to supporting people with FASD, and all that impacts their wellbeing, looking beyond just their disability3,4.
Mental Health & FASD
FASD-Informed Mental Health Support
Positive mental health allows individuals to function effectively in daily life activities, adapt to changes in environment and life circumstances, and cope with adversity.3
It has been well documented in research that many people with FASD experience difficulties with their mental health5,6,7,8. When compared with the general population, it has been found that people with FASD have a much higher rate of mental health challenges, with estimates up to and over 90% of people with FASD experiencing co-occurring mental health issues7,8,9. Mental health challenges are often present in childhood and adolescence and may continue into adulthood. Without proper support or intervention, problems from childhood may become more severe7. Although mental health problems are common in people with prenatal alcohol exposure/FASD, it is also important to consider how other factors (e.g., adverse childhood experiences) may impact an individual’s experiences of mental health5.
When needs related to mental health are not met there is an increased risk for other adverse outcomes (especially later in life) such as unemployment, substance use, lack of access to housing, and criminal legal involvement4. No support, incorrect, or uninformed support can contribute to adverse outcomes and understandable resistance to future acceptance of mental health care. Unfortunately, training regarding disability, and specifically FASD, is often limited for mental health professionals who may feel unprepared to recognize and support people with this disability in their practice10. One consequence of a lack of FASD-informed mental health and health services is that people are often misdiagnosed with challenges that are more easily profiled (e.g., ADHD, conduct disorder, learning disability) and then do not receive appropriate supports that address needs associated with FASD10.
For individuals with FASD, it can be difficult to develop the skills necessarily to maintain good mental health and there may be potential barriers to achieving wellbeing, such as personal experiences (e.g., trauma), lack of available services, and intersecting stigma regarding FASD and mental health3. Therefore, supporting the mental health of people with FASD is important, as it provides the basis for positive emotions, thinking, communication, learning, resilience, and self-esteem, all things that can enhance a person’s wellbeing3. As mental health professionals, it is important to be FASD-informed to identify people who may require an assessment and to feel prepared to provide appropriate intervention services.
Why is FASD-Informed Mental Health Support Important?
Higher rates of mental health challenges in FASD populations
Without proper/appropriate support, challenges can persist across the lifespan
No support may contribute to adverse outcomes and challenges
Co-Occurring Mental Health Challenges
As stated earlier, as many as 90% of people with FASD have been described as having mental health challenges7,8. Frequently reported mental health challenges include2,6,7:
- Attention Deficit/Hyperactivity Disorder (ADHD)
- Conduct Disorder
- Oppositional Defiance Disorder
- Substance Use Challenges
These challenges may present differently for people with FASD compared to the general population, requiring unique screening and intervention approaches7.
By understanding the variability of presentation of mental health challenges seen in people with FASD you can develop specific support strategies that are based on the personal experiences, strengths, and challenges of each client11. However, this is a significant gap in the FASD literature with a lot of research indicating the prevalence of co-occurring mental health diagnoses, but not examining the potential unique presentations of these diagnoses for people with FASD. More research has examined potential presentation of ADHD and anxiety in people with FASD.
Find out how clinicians can support people with FASD, and other co-occurring challenges listen to the following podcast with Dr. Mansfield Mela: #057 Dr. Mansfield Mela: Prenatal Alcohol Exposure: A Clinician’s Guide
Therapy and FASD
Despite significant evidence describing the various mental health challenges experienced by many people with FASD7,8,9, there remains a lack of evidence-informed therapeutic approaches and modalities4. There are a handful of studies highlighted by Flannigan and colleagues (2022) that have implemented targeted strategies:
- The cognitive difficulties associated with FASD can make it difficult to verbalize aspects of experiences, especially traumatic ones
- Art therapy allowed children to express themselves non-verbally (especially around traumatic experiences)
- A school-based mental health program was implemented by teachers for students with developmental disabilities
- Used a combination of mental health literacy and dialectical behaviour skills
- Was effective for promoting factors related to resiliency
- Evaluated dog-assisted therapy, combined with pharmacological treatment in children and adolescents with FASD
- The dog-assisted therapy group achievement improvements in social skills, a reduction in externalizing symptoms and in the severity of FASD symptoms
- The neurosequential model of therapeutics helped providers make clinical decisions based on developmental functioning of children with FASD
- Children’s functioning significantly improved post-interventions
Although people with FASD can acquire skills and strategies through psychotherapeutic approaches (e.g., mindfulness, distress tolerance, coping skills), most interventions currently place emphasis on improving underlying skills that may indirectly influence mental health (e.g., emotional regulation, problem solving)4. For example, there are several intervention programs (e.g., Computerized Progressive Attention Training, Cognitive Control Therapy, Alert program) that have been developed to address this area of functioning14. While this approach can be important and beneficial, other adapted psychotherapeutic approaches may also be effective and beneficial for clients with FASD. From a lifespan perspective, it is also important to consider what approaches may fit best across the life course. For example, self-regulation skills and attachment/family-based interventions may be particularly appropriate and impactful in early childhood2. Many of the interventions that are currently developed were created for middle childhood, leaving individuals in early childhood, adolescence, and adulthood under-supported14.
Specific therapeutic approaches for people with FASD is an area of research that is significantly needed to ensure that all individuals have access to informed and effective support. It may be possible to adapt approaches used within these modalities to the unique strengths and challenges of clients with FASD.
Although there is limited evidence regarding specific mental health approaches for people with FASD, there is preliminary evidence to suggest that people with disabilities, including FASD, can, benefit from mental health interventions11,15. Successful outcomes are more likely when traditional mental health approaches are modified and flexible in considering the individual’s unique difficulties11. In addition, because prenatal alcohol exposure has lifelong impacts, it is important to consider interventions as responsive and evolving across one’s lifespan11.
There are important contextual factors that may play a role in a person’s functioning and therefore may be important therapeutic considerations for people with FASD4. Some of these factors include:
- Disrupted attachment
- Differences in sexual development and health
- Challenges with independence across the lifespan
- Experiences of stigma
- Grief and loss
Although these are not necessarily the central issues/topics in therapy to address mental health needs, these aspects of trauma and adversity may impact people with FASD and may have an impact on their overall wellbeing4.
To hear more about potential promising modalities and approaches, listen to the following podcast where Dr. Aamena Kapasi speaks about FASD and therapy: #073 Dr. Aamena Kapasi: FASD and Therapy
Best Practices in Mental Health Support Across Therapeutic Modalities
Flannigan and colleagues (2022) recently reviewed available evidence regarding approaches to psychotherapy for people with FASD, finding that there is currently limited and insufficient evidence to endorse any specific therapeutic approach. However, it is important to recognize that when it comes to therapeutic outcomes for clients, the approach used has less of an impact than the common thread across modalities which is the therapeutic alliance4. As mentioned previously, people with FASD have important relational strengths that can be leveraged to create a strong collaborative alliance during mental health support4.
Other important factors that impact mental health support include therapist empathy, genuineness/positive regard, client expectations, and cultural adaptations16. Although these are not specific to people with FASD they provide a framework for important considerations when adapting practices.
Through a review of the limited research on FASD and mental health, some promising practices and approaches are highlighted that may provide some guidance on how best to support people with FASD. These are common factors across therapeutic modalities that have been highlighted as important considerations when working with people with FASD. However, each individual is unique with their own strengths, needs, and challenges that should be considered. Because of the complexity and individuality within the FASD population, few standard “rules” or approaches will apply to everyone. It is therefore important to maintain a fluid and responsive approach that is framed in communication and reflection, allowing you to adapt supports, as well as ideas of what “success” looks like17.
Click on the dropdown sections below to reveal the best practices in mental health support
The relationship and alliance built between a therapist or mental health worker and the person seeking support has been shown to be a key factor in the success of psychotherapy4,18. The “therapeutic alliance” speaks to a purposeful and collaborative relationship that creates trust and the development of a safe working environment4. Relational strengths have been uniquely noted for people with FASD, which can support the development of a strong working relationship1. It is also important to consider the consistency of support being provided as switching between workers or support can impede the development of a strong therapeutic alliance. Boundaries are also important in developing a strong working relationship and appropriate and respected boundaries may require walking through the expectations several times and reviewing them often18.
We also want to acknowledge that there are often systemic and organizational barriers that may seem to interfere with your ability to develop this relationship (e.g., limitations in providing long-term therapy). However, it is important to consider that how you engage with someone with FASD may also inform how they feel about therapy and the value of psychotherapeutic care moving forward. If you develop a trusting and equitable relationship with those you are supporting, it can enhance positive feelings and trust which in turn may make someone more comfortable seeking support in the future.
Active Listening and Being Present
In developing a supportive relationship, it is important to consider the needs of each person. With time and structural constraints, it can be challenging to sit in the moment and listen to someone’s story without jumping to solutions and interventions. However, actively listening and being in the present moment with people is an integral component of the relationship and is healing in and of itself.
“I don’t want advice; I want them to listen. Every time I tell counsellors what happened to me, they cut me off and want to give advice. They haven’t even listened to what I need to say and already they have an answer. It is not the story I want them to hear, I want them to know how frightened I am, how out of control I feel, and the fear that this experience will happen again. They (counsellors) want to fix me; they can’t fix me they have to teach me how to live with my history so I can move forward without always panicking every time something reminds me of the trauma I had before.” (AFECT member 2023).
Reflection is another important component of providing mental health services, including thinking about the process with clients (e.g., considering behaviour through a FASD-lens), reflecting on the approach being used with the client (e.g., goal setting), consideration on adjusting your own personal expectations for change, and acknowledging the self-efficacy of clients17. If you do not change your own expectations of the work that can be accomplished with your client, this lack of flexibility and potentially unrealistic expectations can increase the likelihood of feeling burnt out or frustrated11. It is also important to recognize your own comfort level supporting people with FASD and the areas where you may need support or additional knowledge18. To assess your own comfort and for additional resources/information please see the self-assessment in Section 3.
When setting achievable goals, engage with the person you are supporting to determine what is realistic and important to them6. Having alignment between the individual seeking support’s abilities and your expectations will help to develop appropriate goals and decrease any potential frustration. Therefore, it is important to address any potential discrepancies directly6. In addition, writing down goals and revisiting them in subsequent sessions may help. It is important to create therapeutic goals that are realistic for each client, and that will allow for progress to be highlighted and success/strengths to be emphasized6. Exploring previous strategies may support the development of achievable goals, and it is also important to recognize the achievements of small incremental steps toward larger objectives.
Adapting language requires flexibility and the ability to tailor current practices to the needs of each unique client. For example, it may be beneficial to use more concrete language, give simple step-by-step guidelines, be specific, and use examples related to the topics being discussed4,11,17,19. It can also be helpful to adapt activities or homework that are strongly language based, instead using more concrete and accessible language, or supplementing with visual descriptions/options17,19. For example, if a client wants to develop a better routine, creating a visual schedule for each day may be more helpful than developing a written list or calendar. Communication is a two-way process, and it is important to check-in with clients about their comprehension to minimize misunderstandings6.
Informal Methods of Communication
Using informal communication strategies, methods, and locations may help in fostering a genuine therapeutic alliance and allow people with FASD to engage with the support in a different way. For example, therapy could take place while walking or completing other tasks (e.g., gardening.6 This flexibility can help to balance out power dynamics, increase communication, remove the “classroom” feeling of therapy, and support affect regulation in natural surroundings with techniques such as grounding (i.e., reconnecting to the earth, the present moment, yourself, your surroundings, etc.)6.
As no two people with FASD are alike, and what works in one moment may not work well in another, being prepared with a flexible resource guide of approaches can enhance success in mental health support18. As such, using multiple approaches to learning and conversation and presenting information in multiple modalities is important4. Examples of this multisensory approach could include engaging multiple senses (i.e., auditory, visual, and hands-on methods) to examine concepts, issues, and skills4,19. Other multisensory strategies that can build and leverage strengths include drawing, painting, and music19,20. Obtaining information about an individual’s brain profile or previous psychological assessment may provide insight into potential strengths that can be built upon and approaches that can be used. Variability in abilities day to day and hour to hour is a common experience for people with FASD and it is therefore important to be patient, have an open mind, and adapt to the client at any particular time18.
Role playing may be an appropriate approach when developing skills or working through difficult situations. Areas where this may be effective include helping the person to develop impulse control skills, deal with challenging social situations, and improve problem solving18,19.
Mental health can be impacted greatly from an inability or challenge in regulating thoughts, feelings, and behaviours21. Self-regulation includes recognizing and adapting your responses to situations and experiences to engage in a deliberate and thoughtful manner22. However, because of executive functioning challenges, self-regulation can be difficult for people with FASD, which can manifest in increased mental health concerns21. There are many interventions that can support people’s awareness of their emotions and regulatory states. For example, activities that emphasize tuning into one’s current physical and emotional state such as grounding and deep-breathing exercises, as well as sensory tools such as having comforting objects to touch or food to eat, can be helpful. These kinds of activities can support people with FASD to recognize and improve their self-regulation, having a positive impact on their wellbeing21.
In the following video Dr. Jacqueline Pei discusses supporting self-regulation with individuals with FASD: Supporting Self-Regulation with Individuals with FASD
Having patience with people with FASD is important as it is likely that ideas, concepts, and expectations will need to be repeated consistently throughout multiple sessions17,18. In addition, it will be important to have patience with clients who may miss appointments, and to set up effective ways to support reminders17. When engaging with people with FASD it is also important to avoid stigmatizing statements about these challenges (e.g., issues with memory) such as, “we already went over this”. It may be beneficial to the person you are supporting for them to share a story multiple times to process their feelings and emotions. In terms of flexibility, it is important to be willing to change, consider, and adapt your practices to the unique needs of each client. For example, it may work better for clients to have longer sessions (or more sessions), or shorter sessions depending on their unique capabilities.
Many people with FASD thrive with structure and consistency. Therefore, having consistent appointment time and location, providing reminders, and working with the same support person(s) can set up a strong foundation for mental health support4,19. Some common challenges such as missing appointments or arriving at the wrong time or location are not a reflection of the person’s willingness, desire, or effort to get help, but are rather likely a product of brain-differences that create challenges in these areas. Transitions and changes can also be difficult for people with FASD so the more consistency you can bring to sessions, the better18. When changes need to happen, plan sufficiently for these transitions and provide the needed support.
Part of providing structure also requires looking at the physical environment and ensuring that it is organized, that there are no sensory triggers, and that changes to the physical environment are minimal. For example, consider sensory issues around lighting, equipment sounds, and unfamiliar sensations and smells18.
When working with individuals with FASD it can be important to reframe behaviours that may be seen as challenging (e.g., difficulties remembering concepts, not being able to generalize learnings), to avoid viewing the client as the “problem”, and to recognize that if activities, progress, or improvement is not occurring, this is not necessarily intentional6,18. It is important to contextualize behaviours within the challenges that your client experiences because of FASD23. We may need to reframe expectations and allow for consideration of ways in which brain-based differences may impact the client’s ability to meet expectations that are set (e.g., being on time or not missing an appointment). When a client does not meet these expectations (e.g., a missed appointment) it may be an important opportunity to consider how to approach attendance differently and how to collectively seek solutions, rather than punish through discontinuation. Through reflection and perspective shifts, clinicians can begin to understand their client’s behaviour through an FASD lens, with the understanding that there is a function to such behaviours that clinicians can work to understand17.
Common narratives about FASD are often deficit focused, and it is therefore important that you do not contribute to this narrative or the idea that there is no hope for an individual because of their FASD diagnosis11. People with FASD each possess their own unique set of strengths that can be used in the context of mental health support to encourage wellbeing11,18. For example, a client with FASD may be creative (e.g., enjoys drawing, music), so incorporating this attribute into therapy may prove more effective than other modalities18. It is also important to consider that mental health is more than just the absence of diagnoses or challenges but also includes leveraging strengths to increase happiness, joy, and wellbeing. Shifting our perspectives to explore mental health from this lens may allow us to consider flexible and adaptive approaches based on the strengths of our client.
In the video above, Brenda Knight speaks to the important considerations for professionals when supporting people with FASD
Ten Things Adults with FASD and Caregivers Want You to Know
Through conversation and correspondence with CanFASD’s AFECT and FAC committees, we have been able to create a list of things that adults with FASD and caregivers want mental health professionals to know. It is important to listen to people with lived experience and continue to adapt and be flexible to the needs of those you are supporting.
- It is important to be FASD-informed and continue to educate yourself on FASD.
- Every person with FASD is different.
- Recognize that most people with FASD, and their families, have experienced trauma. As such, it is important to be trauma-informed.
- Listening is paramount. It is important to listen to people’s stories before making assumptions.
- The stories told by families may be different from the story given by the person with FASD, and that is okay. Everyone experiences are different.
- Validate people’s experiences and stories, they should be understood and honoured.
- Never dismiss the person’s feelings. People may express themselves differently, just because people may not show their emotions physically, does not mean they are not experiencing them.
- Express yourself in ways that are concrete and focus on self-regulation and how the person feels in their body. Sensory strategies such as drawing, crochet, knitting, gardening, and fidgeting toys during therapy may be helpful for regulating emotions.
- Be willing to commit to the individual. Relationships are not always easy for people with FASD, it may take time and will likely take consistency.
- Recognize if you are not the right fit for someone, and let it be known to the individual that it is okay to change counselors if they are not feeling connected or comfortable with you.
The unique and interconnected biopsychosocial vulnerabilities associated with FASD can increase the risk of negative outcomes, including an elevated risk for suicidality24. Suicidality is broadly defined to include a spectrum of thoughts and behaviours including suicidal ideation, suicide-related communication, suicide attempts, and death by suicide1,24.
Research on Suicidality
People with FASD experience a heightened risk of suicidality compared to the general population6,25. In a group of people with prenatal alcohol exposure being assessed for FASD, the rate of suicidality was 25.9% (substantially higher than estimates in the general Canadian population ranging from 3-12%)24. The highest rates of suicidality were found among adolescents (34.7%) and transition-aged youth (35.2%), consistent with trends in the general Canadian population where suicide is the second most common cause of death among youth and young adults24,26. Adolescence and young adulthood are complex and difficult developmental periods, especially for people with prenatal alcohol exposure and/or FASD who often also experience additional adversities6,24. This complexity is exacerbated by a lack of available mental health services for people with FASD, as well as an increased expectation of responsibility and independence for adults with FASD that may not be appropriate24.
In 2022 Harding and colleagues explored the lived experiences of caregivers of children and youth with FASD and suicidality. The following quotes are expressions from caregivers regarding suicidality in relation to the complex individual, relational, community, and societal level factors:
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Individual Level Factors
“Their life has been really, really hard. They came from a very traumatic background before they came into our lives…Their mother passed away when they were a child, and their father has been in and out of their life. Their father has bailed on them more times than I’d like to count. They have diagnoses of separation anxiety, oppositional defiant disorder, borderline personality disorder, attention deficit hyperactivity disorder, bipolar disorder, intermittent explosive disorder, and learning disabilities, all on top of the FASD… The suicide talk for them at this point occurs daily. They will often say things like “Why am I here, nobody loves me, I just need to die”. Honestly, a lot of “I’m just gonna go kill myself, I’m just gonna run away, I’m just gonna die out in a field somewhere.” Sometimes the suicidal thoughts come from anger at themself or anger at us. They’ll say things like “I hate myself, I can’t stop my brain from doing these things, I hate you, I don’t want to be part of this family, I wish I was never here.” It’s really emotional, just so intensely emotional.”27
Relational Level factors
“For my child it is all relationship based. The relationships with peers and friends, romantic partners, and family members have such a big impact… They have experienced so much bullying at school during their life and I think a lot of that is related to their personal characteristics—their identity, their appearance, and also their developmental capabilities… Their peer group is seriously the greatest thing that could have ever happened to them. For a long time, they didn’t really have friends, and didn’t know how to have friends or make friends, so this strong peer group that they have developed has really been amazing… But, while I am so grateful for this peer group right now, it’s honestly my next big fear and that’s what I’m trying to prepare them for. I have talked to them about their differences. . . that differences are okay, but their peers may grow out of these friendships and that’s okay. I’ve also tried to prepare them for the next phase in life that is happening”27
Community Level Factors
“The one thing lately that has really been helpful is that I’m starting to get better connected, or at least trying to get connected, again with some more support groups. I do have a group of moms that I connect with sometimes too—there are six of us and we all have children with FASD. Each child has different levels of functioning, but all of the youth are relatively close in age, so I draw on their support.”27
Societal Level Factors
“The pandemic has definitely exacerbated things for our family. These emotional outbursts, the daily suicide talk. . . Since the pandemic, it’s definitely increased…Beyond the pandemic, the other thing that I worry a lot about is how the world will continue to respond to and treat our child. Our child is also a member of a racialized group, so we talk a lot about what it is like having a dark dad and a white mom and the risks those carry in the world.”27
After reading through those quotes consider what practices and approaches you could you use to support a youth with FASD and their families, taking into consideration the individual, relational, community, and societal level factors?
The increased risk of suicidality experienced by this population can also be heightened if when some individuals experience multiple co-occurring disabilities or diagnoses. This intersection may be particularly important to consider for people with FASD given the high rate of co-occurring challenges25. The heightened risk of suicidality has also been related to increased levels of stress, poorer mental and physical health, fewer positive coping skills, negative family experiences, fewer social supports, greater victimization, weaker engagement with school, increased high-risk behaviours, involvement in the criminal legal system, and lower socioeconomic status24,25 When supporting someone with FASD who may be experiencing suicidality it is important to assess each of the biopsychosocial factors that may increase their risk24.
Though research in this area is best described as emerging, there are some challenges that researchers have found to be more highly associated with suicidality in those with FASD, that should be attended to and considered in the context of mental health support, including24,25,27:
- Substance use challenges
- Challenges with independence and stability (Adults)
- Disrupted caregiver experiences, unstable/multiple home placements (Youth)
- Trauma/adverse life experiences
- Challenges with relationships (e.g., familial conflict, interpersonal challenges, social isolation)
- Challenges with affect regulation
- Sleep problems/disturbances
- Experiences of bullying, stigma, racism, and oppression
- Lack of awareness, understanding, or compassion regarding FASD
When intervening or working to prevent suicidality with clients with FASD, it is important to modify and accommodate current practices to match the needs of each person. The following are some practices/accommodations that may help to support a person with FASD who is experiencing suicidality19:
- Changing language to accommodate for challenges with abstract thinking (i.e., using concrete terms)
- Check for understanding by asking the person to explain their understanding of questions (i.e., do not rely on verbal affirmation)
- If supporting youth, engage caregivers/family/kinship
- Intervene to reduce risks (e.g., addressing basic needs, developing coping mechanisms, increasing social support)
- Work to decrease access to lethal weapons (e.g., collaborate with caregivers)
Another important component of supporting a person with suicidality (as well as other potential unsafe situations) is safety planning.
Grief and Loss
Many people with FASD possess significant resiliency which may help them to recover from experiences of grief and loss. Grief can look different for everyone, so it is important to meet people where they are in their grief process28.
Many people can experience feelings of grief, loss, guilt, and shame when a diagnosis of FASD is made. These feelings can impact parents, relatives, siblings, caregivers, as well as the person with FASD. Losses will vary and may include the loss of people/relationships, opportunities, and experiences, all of which may create further feelings of grief and sadness. In addition, for youth with FASD, their family unit may encompass birth, foster, and adoptive kinship, which may also lead to feelings of grief and loss related to siblings or inconsistency in a stable home environment. There are also frequent feelings of loss and grief that may occur throughout the lifespan when it comes to experiences of adoption and fostering. For example, an adult may seek out a connection with a birth parent and need support navigating this dynamic and new relationship.
The COVID-19 pandemic has also resulted in significant losses for people with FASD, as well as for their parents and caregivers, who have all experienced changes and loss in structure, routine, community, and support/resources27,28. In addition, people with FASD may experience loss of opportunities and hope for potential. For example, Myles Himmelreich (a motivational speaker and individual with FASD) speaks to his loss of education due to a lack of understanding and support provided to him at pivotal moments in his childhood (see Loss, Grief, and FASD)
People who go through the process of receiving a FASD diagnosis may experience trauma, grief, and loss due to28:
- What they have heard or what they believe about people with FASD and what that may mean for themselves.
- Changes in how others see them.
- Anticipated losses.
- Relationships that may change as a result.
Receiving a diagnosis of FASD is going to impact every individual differently. Although there are often many positive benefits that can come from receiving an FASD assessment and diagnosis, there are also many challenges. It is important to be aware of the challenges, and to support clients through this process by actively listening to the range of emotions expressed by them.
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Grief and loss related to FASD may also include:
Differences in what the individual with FASD may experience between themselves and others
“The FASD diagnosis may not negatively impact the way they see themselves… for many people, however, an FASD diagnosis may make changes in friends, family, teachers, co-workers, etc. choose to interact with the individual… that increase their feelings of loss and grief.”2
Understanding and accepting limitations
“Grief and loss [are] also about knowing your child is going to be smarter than you when they are in grade three and how can I help my child learn then. It is about accepting limitations. I don’t want it to be grief and loss, I want it to be an opportunity for me to make sure my child gets the help they will need in the community. But if there is no help, how sad I will be if I cannot help my child and there is no one else to be there for us to get past this together.”
(AFECT member, 2023).
Extent of disabilities and challenges that are faced
“The realization that this is a lifelong disability…is managed differently by different people.”28
Difficulties at school, social life, and work
“At school, children are likely to experience ongoing common continual changes…children with FASD may have a significantly higher adverse reaction to those changes.”28
Difficulty in maintaining relationships or feelings of not “fitting in”
“Too often chaotic, transient and adverse experience disrupt experiences of friendship and individuals experience grief and loss.”28
A lack of vision for the future
“Many people who have experienced prenatal alcohol exposure have brains that are incapable of thinking into the future…they do experience grief and loss when unable to reach their goals, just like the rest of us.”28
- The following resource was developed to support youth with FASD who are experiencing feelings of loss and to better understand grieving: Broken Heart Dealing With Feelings of Loss and Understanding Grief
- In the following video, Shana Mohr shares her personal experiences with grief and loss associated with FASD: FASD Lunch n’ Learn – Grief & Loss
Important Considerations/Areas for Reflection
When supporting others with grief and loss there are considerations that mental health professionals need to address and stay aware of28:
- Your own triggers/challenges surrounding conversations of loss, grief, and trauma
- Holding a fear of evoking a negative emotional reaction from clients
- Fear that there is no way to support or console a client
- Feeling like you do not have resources to provide or support to offer
- Getting overinvested or overinvolved
- Feeling inadequate or incompetent in the face of a difficult or traumatic situation
Working with people with FASD can be challenging and requires flexibility and patience. It is important to continue to reflect on how you are being impacted by your work and recognize potential signs of burnout or compassion fatigue.
Some of the signs of compassion fatigue include:
- Losing confidence in your abilities
- Personal relationships becoming affected
- Shifting in feelings of dependency, the ability to depend on ourselves and others to be alone
- Isolating yourself and feeling overwhelmed
- Changing worldviews (e.g., questioning job, career path)
- Changing experiences in your feelings of safety
Recognizing these signs can be an initial step in addressing compassion fatigue. Everyone will have different needs, but some important considerations are work/life balance, taking breaks, prioritizing your personal life, trying new things, learning new skills, and connecting with anything larger than yourself (e.g., religion/spirituality, community engagement, spending time with family, etc.). To reduce the risks of developing compassion fatigue, mental health professionals may benefit from working with a mentor who has significant experience supporting people with FASD (with consent from clients). This can help to provide feedback and time for informative reflections. It also is important to prioritize self-care and take intentional steps to reduce stress and increase your own support.
People with FASD are unique individuals with strengths, challenges, and needs. There is no set of standard “rules” or approaches that will work for everyone, and it is therefore important to be open, flexible, and responsive to each individual. When engaging in mental health support with people with FASD there are some important considerations: strengthening the therapeutic alliance, engaging in reflection, adjusting language, using multiple approaches, being patient and flexible, providing consistency and structure, reframing behaviour, and focusing on strengths. Collaborating and holding genuine care for clients with FASD are imperative practices that will support safe, trusting, and positive experiences.
The following story from Angel speaks on what she would like professionals working with people with FASD to know:
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17Tremblay, M., Pei, J., Plesuk, D., Muchortow, A., Mihai, P. & Jordao, R. (2017). Development of a clinical practice model for serving clients with fetal alcohol spectrum disorder. International Journal of Advanced Counselling (pp. 82-97. Springer. http://dx.doi.org/10.1007%2Fs10447-017-9284-0
18Substance Abuse and Mental Health Services Administration (SAMHSA). (2014). Addressing Fetal Alcohol Spectrum Disorders (FASD). Treatment Improvement Protocol (TIP) Series 58. HHS Publication No. (SMA) 13-4803. Rockville, MD: Substance Abuse and Mental Health Services Administration.
19Huggins, J. E., Grant, T., O’Malley, K., & Streissguth, A. P. (2008). Suicide attempts among adults with fetal alcohol spectrum disorders: Clinical considerations. Mental Health Aspects of Developmental Disabilities, 11(2), 33-42.
20Gerteisen, J. (2008). Monsters, monkeys, & mandalas: art therapy with children experiencing the effects of trauma and fetal alcohol spectrum disoder (FASD). Art Therapy, 25(2), 90-93. https://doi.org/10.1080/07421656.2008.10129409
21Pei, J., Kapasi, A., Kennedy, K.E., & Joly, V. (2019). Towards Healthy Outcomes for Individuals with Fetal Alcohol Spectrum Disorder. Canada FASD Research Network in collaboration with the University of Alberta.
22Gill, K., & Thompson-Hodgetts, S. (2018). Self-regulation in fetal alcohol spectrum disorder: A concept analysis. Journal of Occupational Therapy, Schools, & Early Intervention, 11(3), 329-345. https://doi.org/10.1080/19411243.2018.1455550
23Kapasi, A., Tremblay, M., Pei, J., Rorem, D., Makowecki, E., Wuest, V., Regier, M., McLachlan, K., Dunleavy, B., Mela, M., Benjamin, M., & DesRoches, A. (2022). Moving Towards FASD-Informed Care in Substance Use Treatment. Canada FASD Research Network.
24Flannigan, K., McMorris, C., Ewasiuk, A., Badry, D., Mela, M., Ben Gibbard, W., … & Harding, K. D. (2022c). Suicidality and associated factors among individuals assessed for fetal alcohol spectrum disorder across the lifespan in Canada. The Canadian Journal of Psychiatry, 67(5), 361-370. https://doi.org/10.1177/07067437211053288
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26Government of Canada. (2023). Suicide in Canada: Key Statistics. Retrieved from the Public Health Agency of Canada https://www.canada.ca/en/public-health/services/publications/healthy-living/suicide-canada-key-statistics-infographic.html
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28CanFASD Online Training. CanFASD: FASD for Community and Social Services Professionals Level II. https://canfasd.ca/