I have been going through a chain of autistic meltdowns recently. I have attempted to take time off work and to rest, but my life is an unending labyrinth of stress and responsibility that I cannot run away from. This is problematic and yet normal for the world we live in.
According to the National Autistic Society in the U.K., an autistic meltdown is an intense response to an overwhelming sensory or emotional stimulus. When this happens, the autistic person temporarily loses all control of their behavior. This is most stereotypically depicted as the way autistic children behave when they melt down. The image most people think of when they think of an autistic meltdown is the autistic child who lies in the aisle at Walmart screaming, with a parent who can’t comfort or soothe them no matter what they do. An autistic meltdown is often confused with a temper tantrum, but they are not the same. Meltdowns occur when the autistic person has been overwhelmed by stimuli and can no longer handle the overwhelming situation.
While meltdowns in autistic adults are also a complete loss of control of behavior, they look very different. In adults, a meltdown can manifest as crying, yelling, lashing out, suicidal ideation, self-harm, an inability to talk, a lack of ability to think, or rage.
According to research by Phung et al. (2022), autistic adults describe feeling out of control, and they feel this with their entire body. They describe blurry vision, hot muscles, warm cheeks, and bunched-up shoulders. They have a diminished ability to think and sometimes difficulty finding words or remembering basic things. Autistic adults describe feeling completely out of control and like everything is fuzzy.
I am in a place where everything is fuzzy almost all the time. In The Unmasking Autism Workbook for Adults, I lay out a plan for preventing meltdown and coping with meltdown when it occurs. The plan involves resting, taking time off, and creating safe places where you can be alone and free of sensory overload. It has worked for me over the course of my life and has worked for many of my clients as well. However, many adults often find themselves in situations in which they can’t rest or find a safe place free of sensory stimuli. So what do we do when our lives prevent us from doing what we need to do to thrive or even survive as autistic adults?
In a perfect world, all autistic adults would be able to have their disability needs met. But we don’t live in a perfect world. Among my clients, I often see very adept people hopping from job to job because they lose their jobs when they melt down, even if their performance is otherwise excellent. I see people lose relationships and financial stability. In our imperfect world, how do autistic people prevent themselves from melting down? This is the question I wrestle with the most.
In the last five months, I have filled out five short-term disability packets and four disability letters to help my autistic clients deal with autistic burnout and meltdown.
Autistic people don’t work like neurotypical people. Often, we can accomplish more than neurotypicals, but we can’t do so in 9-to-5 jobs that require networking skills and regular in-person staff meetings. We are capable of relationships, but we also need more breaks from all stimuli than neurotypicals. This world isn’t built for us, and the only way to prevent meltdowns, burnouts, and shutdown is to change the expectations.
Many of the neurotypical world’s structures serve no functional purpose although they fit very well with neurotypical lives, but they don’t fit the way we function. The truth is that the neurotypical world isn’t meant for us, and neurotypicals often won’t understand our needs even when they are trying to. This is why unmasking and self-advocating are so critical.
Standard Meltdown Prevention Plan
Source: Jessica Penot, Canva
Every person for whom I have written a letter this year to help them obtain short-term disability has gotten at least a month off work to recover from burnout. Our rights are protected: The Americans with Disabilities Act (ADA) protects our rights to have time off work due to autism. I have come up with many meltdown and burnout plans that have worked for my clients and myself. These plans all involve taking breaks from pressure and sensory overload and are based on the current research on autistic meltdown (Bedrossian, 2015). Autistic meltdowns can be mitigated and sometimes even prevented by following the right plan.
However, these plans can’t be utilized without unmasking and self-advocacy. This requires acceptance and the belief that you as an autistic person deserve respect and accommodation. This is the hardest obstacle for many autistic adults to overcome.
For years, I lived in a spiral of shame. I looked at all my behaviors and saw them as failures. I failed to have the social skills necessary to be likable so I could keep jobs and maintain friendships. I failed to be able to network in career-related areas. I failed to see red flags in people who took advantage of and hurt me and those I love. I failed to be able to work like normal people. I failed in marriage. I failed in so many things. I worked relentlessly to hide this failure, to make the correct faces, and to say the right things. Yet still I failed because I was autistic. No matter how much I tried to be like everyone else, I couldn’t.
Yet I was not a failure, and now that I advocate for myself, take the breaks I need, and allow myself to live according to my needs, I have succeeded. I have succeeded at work and with those in my life. This is true of my clients and the autistic people I work with too. Those who unmask, live authentically, and advocate for their needs can minimize their meltdowns, while those who don’t may end up living like I did for the bulk of my life.
In my work and in all my writing, I strive to teach the skills that we need to live in this crazy, neurotypical world, and the biggest skills we need are learning to unmask and self-advocate.
