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Systemic Family Therapy and Disabilities

 

Family Systems Illness Model and neurodevelopmental disabilities

John Rolland’s Family Systems Illness (FSI) model provides a systemic framework for us to conceptualize both disabilities and family functioning as well as their intersection and reciprocal influences (Rolland, 2018). Foundational to the field of marriage and family therapy is systems theory, conceptualizing health issues within their relational context, despite the larger healthcare field operating based on the individual as the unit of diagnosis and treatment (Wampler et al., 2017). Rolland’s model offers a natural bridge for clinicians to conceptualize both disabilities and family functioning systemically and according to their biopsychosocial-spiritual elements. Clinicians can use the framework as a roadmap to help them attend to the developmental and psychosocial demands of a disability and the intersection with a family’s multigenerational belief system, and life cycle context (Rolland, 2005).

In contrast to the medical model, the social model of disability describes a disability in relation to the environment of the person. The medical model views the individual as requiring care to fix the disability or learn to function despite the disability (Goering, 2015). Similar to systems theory, the social model of disabilities considers disabilities within their larger societal context and views any functional limitations as a result of societal attitudes and structural inequities (Oliver, 1996). Dimitri (2003) wrote that, “one is not born a disabled person, but is observed to be one” and draws on social system theory to make the case for the distinctions society makes between concepts and categories, which are system specific and based on the observer’s perspective. In alignment with the trend toward more biopsychosocial models of health is the individual-environment model of disability, which integrates the medical and social models and considers individual functioning at three levels: 1) body functions and structures; 2) activities and participation; and 3) environmental factors related to physical, social, and attitudinal factors that serve as barriers or facilitators of functioning. Family and relational systems would be part of the third factor as well as intersect with the first two.

In this article, we apply an integration of the FSI model and individual-environment model of disability to conceptualize neurodevelopmental disabilities and family functioning. Specifically, we focus on neurodivergent families or families that have one or more members who have been diagnosed with some of the commonly diagnosed neurodevelopmental conditions such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Tourette’s Syndrome. These neurodevelopmental conditions are typically diagnosed in childhood, although there is a noteworthy and current upward trend toward individuals getting diagnosed in adulthood with ASD and ADHD (Lai & Baron-Cohen, 2015). For example, it is not uncommon for a child to get diagnosed with one of these conditions and then a parent or caregiver follows suit, recognizing their own symptoms in a new way through their increased understanding of their child.

These neurodevelopmental conditions affect functioning in daily living, social (i.e. family, peer), academic, or occupational aspects of life (Wong & Shorey, 2022). The individual-environment model of disability has influenced a greater acceptance of neurodiversity, which views that the brain differences associated with these conditions create normal variations in human behavior. Neurodivergent individuals and families can sometimes get stuck as they attempt to understand the functional limitations of the conditions, advocate for accommodations, while also having the desire to view the conditions simply as brain differences that are not a problem that needs to be fixed. Marriage and family therapists (MFTs) can help families understand the reciprocal influences of the neurodevelopmental conditions with family functioning through a strength-based, empowering, “both/and” framework versus an “either/or” one.

Assessment

Beyond typical family systems assessments, MFTs can ask about the psychosocial demands of the conditions on the individual and the family considering practical, financial, and emotional demands. Then, through conversation with the family, clinicians can assess how the family’s functioning intersects in positive and limiting ways with those psychosocial demands. For example, how does the family get things done, organize, communicate, and express emotions? What roles do the family members play in the family and who takes care of whom, and how? Are there imbalances and resentments or ruptures that need compassionate attention before a family is able to move to a more problem solving or solution oriented focus? MFTs should assess the functioning of each subsystem in the family. For example, if there are two parents/caregivers who are caring for a child or children with disabilities, assess how they are functioning as a team and sharing responsibilities, even if one or both are neurodivergent themselves.  How do they communicate about the disabilities themselves and is everyone feeling accepted within the family? How closed or open is the family system in terms of accepting outside influence, including the help from an MFT?

MFTs ought to assess each family members’ understanding of the diagnosis(es) and have a shared language for being able to communicate in a compassionate and accepting way. How can the family have a shared narrative of what it means to them to be a neurodivergent family? A key question to consider is how individual and family strengths and gifts might buffer or be used as a resource to reduce impairments in functioning. For example, one family member might tend to be more rigid and routine oriented and tasks like organizing, scheduling, and getting things done may come more naturally to them. Perhaps it even gives this family member satisfaction because it is how they show care and love. How can the other family members make sure that they are showing appreciation for this family member and the assets they offer while also knowing their limitations and signs that they need support? It is not uncommon for neurodivergent individuals to be creative and think outside the box. How can this strength be used to help a family meet the practical challenges that the neurodivergent conditions may also bring? Or, how does the family spend time and have fun together? Do particular family members have a way of bringing humor and fun into their family life?

Relational therapy considerations

As systemic therapists, we can help individuals and families talk about the ways that their condition(s) impact their individual, dyadic, and family functioning while maintaining respect for the whole person and advocating for full inclusion of people living with disabilities in society. It is often important to acknowledge and validate the long-term nature of disability and the impact on the family system from each member’s perspective. MFTs should explore if there has been any trauma that an individual/family may have experienced that they attribute to the disabilities. MFTs need to openly discuss the family’s perspective on how much the disability is invisible or visible to the outside world and the impact that this has on the family system. This is especially important when individuals and caregivers feel that the disabilities are invisible and they are often in a position of needing to convince others how functioning may be impaired, which can often lead to a sense of isolation. By attentively listening to our clients’ experiences of how their neurodevelopmental conditions cause functional impairments and play a role themselves within the family system, MFTs can help individuals and families to creatively think about accommodations that could potentially reduce barriers of inclusion and accessibility (Goering, 2015). Lastly, MFTs can help families discuss needs and how to support optimal functioning for each individual and the family as a whole in a way that prioritizes the needs of all members of the family. Families often need some guidance around doing this in order to prevent competitiveness among members regarding whose needs matter most.

AAMFT Workshop: Family Treatment: Developmental Disabilities

In addition to providing a safe space to discuss potential struggles and negative reciprocal impacts, we can encourage open discussion of the gifts and strengths that individuals and families have that could be part of or separate from their neurodevelopmental and brain differences. We can discuss the resources that families have that they can utilize to help meet challenges related to the disability. This can create a frame of togetherness for families to work as a team, using their strengths and gifts as a shared resource. An MFT can help a family identify where they each are in terms of flexibility and rigidity around daily living such as schedules and routines. By meta-communicating about these things with a family, MFTs can also help families anticipate challenges and proactively problem solve.

Perhaps most important is that MFTs understand how the disability/ies intersect with other identities, both marginalized or privileged. Open discussion of how contextual variables play a role even among families that share the same or similar disabilities can help normalize their struggles, aid in effective adjustment and problem solving, as well as help the clinician work collaboratively with the family, as well as the other providers involved. Therapeutic recommendations for working with families who already experience significant marginalization due to contextual factors such as socioeconomic status or race/ethnicity will necessarily look different than those for economically advantaged families who have more privileged identities.

MFTs can play a significant role in serving and advocating for the needs of neurodivergent families, with their relational therapy skills and systemic theoretical conceptualization of healthcare issues. Systemic conceptualization of the disability as well as their individual and relational clients can help MFTs effectively assess, intervene, and provide resources for neurodivergent families. Neurodivergent families can learn about the biopsychosocial demands of the disability unique to their family and be empowered to work together as a team to use their resources to help them meet the challenges.

Perhaps most important is that MFTs understand how the disability/ies intersect with other identities, both marginalized or privileged.

Linville

Deanna Linville, PhD, LMFT, is an AAMFT Professional member holding the Clinical Fellow and Approved Supervisor designations. She is the co-founder, executive & clinical research director at the Center for Transformative Healing. She has been providing direct clinical service, supervision, consultation, and teaching in the field of marriage and family therapy for over 20 years. She is a clinical researcher who has over 50 publications with a focus on addressing health disparities, biopsychosocial models of health, and eating disorders.

Emily Johnson, MEd, LMFT, is an AAMFT Professional member holding the Clinical Fellow and Approved Supervisor designations, and a certified Emotionally Focused Therapist. She is the co-founder and clinical director at the Center for Transformative Healing. She has been providing direct clinical care, supervision, and teaching in a variety of settings in the field of marriage and family therapy for over 17 years. She has both professional and personal experience with families who are impacted by disability.


Goering S. (2015). Rethinking disability: the social model of disability and chronic disease. Curr Rev Musculoskelet Medicine, 8(2):134-8. doi: 10.1007/s12178-015-9273-z. PMID: 25862485; PMCID: PMC4596173.

Lai M-C., Baron-Cohen, S. (2015) Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, 2, 1013-1027.

Michailakis, D. (2003). The Systems Theory Concept of Disability: One Is Not Born a Disabled Person, One Is Observed to Be One. Disability & Society, 18.2, 209–229.

Oliver M. (1996). Understanding disability: from theory to practice. New York: St. Martin’s Press; 1996.

Rolland, J.S. (2005). Cancer and the family: An integrative model. Cancer, 104: 2584-2595. https://doi.org/10.1002/cncr.21489

Rolland, J.S. (2018). Helping Couples and Families Navigate Illness and Disability: An Integration Approach. Guilford Publications.

Wampler, K. S., Blow, A. J., McWey, L. M., Miller, R. B., Wampler, R. S. (2019). The Profession of Couple, Marital, and Family Therapy (CMFT): Defining Ourselves and Moving Forward. Journal of Marital and Family Therapy, 45, 5–18. https://doi.org/10.1111/jmft.12294

Wong,T. & Shorey, S. (2022). Experiences of peer support amongst parents of children with neurodevelopmental disorders: A qualitative systematic review, Journal of Pediatric Nursing, 67, e92-e99. https://doi.org/10.1016/j.pedn.2022.09.004.

 

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