“You Can’t Have a Window visit”: The Experience of Mothers of an Adult Child with Autism Spectrum Disorder and an Intellectual Disability Living in Supported Residential Accommodations During the Pandemic

Introduction

 

The COVID-19 pandemic brought unprecedented challenges to all aspects of life, and for mothers with adult children on the Autism Spectrum (ASD) spectrum with Intellectual Disability (ID) living in supported residential facilities, the separation was particularly brutal. A recent study published in June 2024, titled ““You Can’t Have a Window Visit”: The Experience of Mothers of an Adult Child with Autism Spectrum Disorder and an Intellectual Disability Living in Supported Residential Accommodations During the Pandemic” (James, Citation 2024), offered a poignant look at the emotional toll these restrictions took on mothers and their children.

The title itself captures the essence of the mothers’ frustration. “Window visits,” where families could see each other through a physical barrier, became a grim substitute for the in-person connection these families desperately craved. The research delves into the specific ways these limitations impacted both mothers and their adult children.

A Double-Edged Sword: Protecting Health While Severing Connections

 

Supported living facilities, aiming to safeguard the health of their residents, implemented strict measures during the pandemic. In many cases, this meant a complete halt to in-person visits. While undoubtedly necessary from a public health standpoint, the study reveals the significant emotional consequences of this isolation.

For adults with ASD-ID, familiar routines and social interaction are essential for maintaining emotional well-being. The lack of physical contact and the disruption of established routines were reported to cause anxiety and regression in some individuals. Mothers described feeling helpless, unable to provide the comfort and support their children craved during this difficult time.

The study highlights the unique challenges faced by individuals with ASD-ID. Social interaction can be difficult for anyone, but for those with ASD-ID, it can be particularly taxing. Familiar faces and consistent routines offer a sense of security and predictability that is crucial for emotional regulation. Without these familiar touchstones, the pandemic caused significant distress for many residents with ASD-ID.

The Enduring Strength of the Mother-Child Bond

 

The research also underscores the critical role mothers play in the lives of their adult children with ASD-ID living in supported housing. The mothers in the study emphasized the importance of maintaining a sense of normalcy and routine for their children. Even brief, in-person visits were reported to have a significant positive impact on their emotional state.

This unwavering dedication shines a light on the enduring strength of the mother-child bond. Despite the physical separation, these mothers remained a vital source of comfort and support for their children. The research underscores the need for supported living facilities to acknowledge and value these family connections.

A Call for a More Flexible Future

 

The experiences documented in James’ (2024) research serve as a powerful call to action for policymakers and care providers in supported living facilities. The study emphasizes the importance of considering the mental and emotional well-being of residents alongside their physical health.

Moving forward, there’s a need for more flexible and family-centered approaches. The research suggests exploring options such as designated outdoor visiting spaces or implementing stricter safety protocols to allow for limited in-person interaction.

The pandemic highlighted the shortcomings of a one-size-fits-all approach in supported living. There’s a clear need to develop plans that can balance public health concerns with the social and emotional needs of residents, particularly those with ASD-ID who rely heavily on familiar routines and family connections.

This research offers valuable insights that extend beyond the specific context of the pandemic. It serves as a reminder of the importance of prioritizing family connection in the lives of individuals with ASD-ID, regardless of their living situation. By fostering a more flexible and supportive care model, we can ensure that these vulnerable individuals have the resources they need to thrive, even in the face of unforeseen challenges.

 

Source:

https://www.tandfonline.com/doi/abs/10.1080/19315864.2024.2361636

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