By: Dr. Jonathan Weiss & Paula Tablon Modica
(Part 1 of our COVID-19 blog series)
We’re in COVID-19 days. The world has been altered substantially. Changes have been stark. We don’t need to describe what COVID-19 is or about the specifics of distancing. At the time of this writing, there is talk about not if, but when and how we start to re-open things. It will be gradual and is still full of uncertainty.
Everyone’s experience in this time is unique. We all live with different circumstances. In 2011, Drs. Weiss and Lunsky developed a quick way to understand how autistic families were doing in terms of their distress levels (called the Brief Family Distress Scale). It was just one question, asking a person to select a statement that best reflected how they and their family were doing in terms of crisis. You can see the 10 options here:
When completed by Canadian caregivers of Autistic people, there was a range of responses. On average, caregivers were most likely to endorse the statements near the middle of the scale, like “Things are often stressful, but we are managing to deal with problems when they arise” or “Things are very stressful, but we are getting by with a lot of effort.” There was a smaller group (about 1 in 10 of the respondents) who were in crisis at the time too.
We wonder what responses would look like today. Would they still look the same? Would there be a larger portion of people in the “crisis range” (checking one of the boxes between #7 and #10)? Would families be rated as higher in distress, but still coping on their own? We suspect for many, this is what the choice would be.
On social media, we’ve read many stories about how COVID-19 has resulted in increased stressors. Stories of lost support (whether it be health care, educational, financial or social domains), lack of respite, disruption to positive routines, anxiety about health, or exposure to illness and death. But to be fair, we’ve also heard messages from Autistic people and families saying that this time is easier for them than before COVID-19. That they have less stress in their lives because they are not being forced to experience a non-Autistic society that is full of their usual daily stressors – they do not need to navigate risks like interpersonal victimization and rejection, social confusion, uncomfortable sensory experiences, or being prevented from engaging in their cherished interests or rituals. Some Autistic people worry about having to go back to the pre-COVID-19 “normal”.
There has been a lot of thought put into the various factors that help us and our families remain resilient in the face of stressors. The Family Adjustment and Adaption Response (FAAR) model suggests that families are constantly balancing their experienced demands (like their stressors) with their capabilities (like their social or financial resources, or their coping skills). The model goes beyond just weighing the scales. It suggests that the meanings, or beliefs we place on these demands and capabilities are critical. Two families may have the same demands and same capabilities, but the differences in the meaning they give to those demands and capabilities and how they make sense of them matters.
An important message in this model is that we are never really “balanced”, but instead are in a process of balancing. Resilience could be understood as when the demands outweigh the capabilities, and we find a way to come back to some sort of balance. It may not be easy, but in these times, we ultimately adjust and accommodate new realities.
For many, COVID-19 is a time of stress. Many people have sprung into action to recommend what Autistic people and their families could do, not only to promote public health, but also to cope with the changes that are in our midst. There are a lot of messages about recommendations. A lot of things “to do”. It can feel overwhelming!
We’ve noticed some patterns in these recommendations and they seem to fall under general themes that relate to the FAAR model – they are about reducing demands, increasing capabilities, and/or changing the meaning of experiences.
We offer the following 3 steps to coping during COVID-19:
- In looking at the Brief Family Distress Scale, assess where you and your family are at. Understanding the context of your current experience is the first step to make a change.
- Explore if and how you can change:
- the demands being placed upon you or your family in the moment
- the resources that are accessible to you and your family and
- how you or others in your family give meaning to the situation
- Re-assess distress. Did it decrease at all or did it stay the same? Our experiences of distress do not move from all to nothing in a short period of time. When we make gains, they are typically incremental. Coping is a process, not an outcome.
You may think that these 3 steps are too abstract or too simple, and you are looking for specific strategies. We’ve reviewed a number of different autism-related sources that make specific recommendations for how to cope with COVID-19, including resources from Autistic adults, service providers, and advocacy organizations. In the following blog posts, we will summarize how all these recommendations focus on reducing demands, increasing capabilities, or changing meaning.