Malena Ernman's account of daughter Greta Thunberg's Asperger's diagnosis offers vital insight into caregiving relationships

In an excerpt from their memoir — Our House Is on Fire: Scenes of a Family and a Planet in Crisis by Malena and Beata Ernman, Greta and Svante Thunberg — published in The Guardian, we get a view of a family coming to grips with a personal crisis.

The excerpt has Malena Ernman detailing how her daughter Greta Thunberg was diagnosed with Asperger’s, high-functioning autism and obsessive-compulsive disorder. The diagnosis is almost anti-climactic: the period leading up to it has been an uphill struggle for the family, and by this time, they’ve actually reached a place where they’re all able to cope with Greta’s condition.

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These terms are used to investigate the quality of life, health and mental health, stressors and life experiences that are unique to caregivers. The Thunbergs’ journey of caregiving stress which begins even before Greta received a formal diagnosis, urges us to see caregivers as being beyond the dichotomy of all-knowing, perfect saviours or selfless, exhausted souls. It points to the reality of caregiving being a process of fumbling in the dark, dealing with uncertainty, sometimes holding back and at other times letting out frustrations. Moreover, it draws attention to the nature of the caregiving relationship as being ever-evolving, dynamic, and dependent on factors other than the (physical/psycho-social/neurological) condition itself.

It becomes critical to note that the caregiving stress experienced by Greta’s parents is moderated by a number of factors. Even more so, it becomes important to acknowledge that their identities as white, urban, educated, upper class parents who aren’t under the obligation of conventional-routine work lives provides many safety cushions to their caregiving narrative. As Malena herself notes, while her caregiving experiences were also about toil and patience, access to health care professionals, services, health information, education and socio-economic factors, definitely served to ease their caregiver burden. Moreover, the sharing of parental roles as well as parental partnership (as reflected in the excerpt from the memoir) certainly is telling of the privilege the family holds in terms of being educated, and socio-economically privileged.

The Thunbergs, from left, Beata, Malena, Svante, Greta. Image via Instagram/@malena_ernman

The excerpt also throws light on how the caregiving relationship is not isolated to the relationship with the recipient of care within the four walls of the home. Seeking professional help for Greta’s health from stakeholders like allied health professionals, doctors, psychologists and school authorities helped aid recovery and ease caregiver stress. However, along with it came multiple re-runs of explanations with school authorities to explain Greta's ‘condition’ (pre-diagnosis), and constant back and forth with her doctors to find out what the next step is to help the teen get better as well as finally settle on a psychiatric diagnosis.

Interestingly, a diagnosis remains a convenient but legitimate label to help caregivers transact with these various stakeholders. Siblings, too become an intrinsic part of the caregiver dynamic.  As with any human relationship, sibling relationships too are often not without their complications: Greta’s younger sister Beata (who was also diagnosed with ADHD, elements of Asperger’s, OCD and oppositional defiant disorder a little after Greta received her own diagnosis) is now okay with being “Jay-Z to [her older sibling’s] Beyoncé”. But it took a period of resenting Greta, her parents and how much of their time was consumed in Greta’s caregiving, before Beata could reach this acceptance. Age, life-stage, time to deal with the family dynamics, relationship with member/s of the family and the capacity of family members to work on the relationship are crucial in this regard.

Another nuance that Malena’s excerpt touches upon is the very insightful and valuable link between the process of recovery and caregiving. Autism is a lifelong condition, and while it isn’t curable, its symptoms can be managed. However, recovery isn’t a linear process and therefore neither is caregiving, and both go beyond a psychiatric diagnosis. Even after a host of different interventions to better Greta’s condition, for Malena there are still issues that remain “sensitive”, such as Greta’s eating habits; there are still times when she and Svante have to be on constant guard especially in situations that pose a threat to their children’s well-being (more so as they are in the public eye).

As a caregiver and parent, Malena has come to see Greta’s condition beyond what it dictates in neurological and psychological terms. She sees her child’s experience with bullying as being critical to what is perceived as Greta’s inability to develop friendships with people her own age, and her deep sensitivity to the issue of climate change as being integral to why she is seen as ‘different’ from other children.

Furthermore, Malena throws light on many strategies that reflect her openness to learn — “never meeting anger with anger” or adapting, planning “hour by hour”. However, there are parts of the excerpt that give the sense that she might be trying hard to explain her actions and decisions (pertaining to her and her family’s lives) to the world outside. While the media spotlight on the young climate activist might be the source of the need for these explanations, by and large, caregiving (and even parenting) comes under the surveillance of society’s hawk-like gaze that sees the power imbalance in the caregiving relationship as something that happens by default. To see nuances beyond this power dynamic narrative, it therefore becomes important to see the caregiving relationship for its trial and error, and as a process where both the parties negotiate power, self-determination, social conventions within their contexts.

Lorelle completed an MA in Social Work in Mental Health from TISS (Mumbai) in 2017, and has been working in the education space since. Her research interests include mental health, culture and gender studies.