August 11, 2023
How Masking Led to a Low Demand Lifestyle.
Many autistic folks either consciously or unconsciously mask their autism in school, socially, at work, or even in some cases, at home. What is masking? Masking is when you hide your autistic traits, challenges, and/or distress in situations in order to appear as if you are fine or fit in with the environment. This could be restricting your movements or stimming behavior, enduring sensory overload, preparing conversations in advance, or attempts to mirror the behavior and expression of others. What people refer to as “mild autism” or “high functioning” is only mildly experienced by the person observing. It is not “mild” to the autistic person. Those labels are inaccurate. It would be far more accurate to say higher or lower capacity. The “levels’ are meaningless. A so-called level 1 autistic may move in and out of higher or lower capacity depending on many different factors such as demands, available support, sensory processing, and environment. There are times when we are able to do more and other times when we have to reduce the demands or change our environment.
I grew up in a compliance driven home. I was not allowed to express my autistic traits and compliance was driven by physical and verbal punishment. Still, I was able to express myself in other settings, albeit becoming the weird kid who gets bullied but learns to negotiate my way to getting some form of accommodation outside of the home. I did this throughout my life without understanding why I was doing it. I intuitively knew what I needed to make life easier to manage. I found ways to create a very low demand lifestyle. I had few bills, rigid routines, space for alone time, low demand work schedules or roles. Every aspect of my life was routine and low demand. Even in my low demand lifestyle, I experienced challenges but my capacity was far higher. I could’ve managed many aspects of life much better if I had known I was autistic. I likely would have considered other choices at times where big life decisions were made. But, I just kind of bumped and bruised through life with little awareness of how to articulate or address my experience.
Like most people, I wanted a partner and family one day. I didn’t know I was autistic at the time when I met my partner. I had only been labeled “gifted” and, OCD, and ADHD at that point. I interpreted that as being quirky, sensitive, and rigid/anxious. It would not have dawned on me that a higher demand lifestyle would be too much. I wouldn’t have known that parenting can be very sensory overloading. I embraced the new roles and demands with excitement and joy. I became a husband, a father, a stepfather, and a home owner. I went to graduate school and took on multiple professional job roles. I had more responsibility. I tried my best to keep up with the higher demands for too long. When a medical situation turned into a series of complicated hospitalizations, surgeries, and permanent loss of function, I developed a chronic auto immune illness, yet to be identified. There were of course, other life stressors that we all experience from time to time.
The cumulation of this high demand lifestyle led to an extended autistic burnout period and likely was the cause of the chronic illness. There is research that supports the correlation between extended periods of stress and chronic illness, which is more prevalent in autistic individuals. I will write a future blog post about autistic burnout. At that point, everything just stopped. I had more frequent shutdowns and meltdowns. I had been a practicing therapist for some years but found that the strategies that worked for many of my clients did not work for me. Applying the appropriate strategies requires the appropriate diagnosis. I now see this often with clients and students I work with.
By this point, I had suspected I was autistic for several years. Burnout forced me to get a formal diagnosis so that I could get the accommodations I needed to function and recover from burnout. When an autistic person goes through a burnout, it exacerbates sensory processing challenges and can last months or years. Burnout makes it nearly impossible to mask. A burnout can change your life drastically because it is during burnout that you feel the effect of chronic masking and higher demand lifestyles.
I learned that I need to lower demands and find ways to not mask. This means I need to be aware of my body, use appropriate self-care, and reduce the expectations that are unreasonable for my neurology. There is a lot of available information on what a low demand lifestyle looks like as well as commentary from families who have adopted this lifestyle that benefitted both their neurodivergent and neurotypical family members. A good way of understanding demands is to look at a small section of your day. All of the things that are expected of you are demands. Getting out of bed, showering, brushing your teeth, sitting in the car, going to the store, answering a phone, going to school or work, performing each task and responsibility. There are so many demands that are expected to be done at certain times in certain settings of which we really have little or no control. Each role that we assume creates more demand. Every neurodivergent or autistic person is different but it is important to find the right balance of demands. We need more time to rest and transition. We need to anticipate how much energy and resources environments will use so we can avoid depleting our capacity reserves.
I cannot clear cut my high demand life altogether. I cannot stop being a father, owning a home, or being a partner in marriage. Instead, I can look at the whole of my work and personal life and begin to make accommodation for or reduce situations that require a higher sensory tolerance or that rely on masking to comply with social communication norms, increasing my capacity to be able to attend to the demands that are necessary. For instance, attending a work retreat is not going to be helpful to me and would drain my capacity by forcing me to mask in order to fit in. Going to large event or bright crowded store might be something I shouldn’t do and I can negotiate those responsibilities with my partner who has more capacity for those things. I also find that having more control over your schedule, when you do things, and how you do things reduces the demand and increases the capacity to do those things.
A low demand lifestyle means the whole family prioritizes creating space for rest, reflection, simplifying schedules and demands, and prioritizing self-care. Letting go of some demands can benefit everyone, parents and children alike. I am still cultivating a low demand lifestyle but have found the changes I have made so far to be a relief.
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