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What My Autistic Meltdowns Were Trying to Tell Me

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We have all heard of the dreaded meltdown — those moments of terror in which we autistic people become a force of nature while our nervous system purges all of its stored anxiety. Some of us have triggers where the anxiety is instantaneous. Others have a tipping point at which the anxiety has reached its threshold and the sensory overload meltdown runs its course. However, what if you diverge from your normal pattern of meltdowns?

Usually, my meltdowns are completely sensory-related. I will reach a tipping point and it all comes out. I have no control over it. Meltdowns are involuntary. On a normal meltdown day, I may throw things, say things I don’t mean, punch a wall, hit my head, stomp my feet, and then it’s over. I recover, usually in the shower, and then sleep for hours as my body adjusts to the neurological reset it just experienced. I get up later and get on with my life. However, what do you do when for no apparent reason, your meltdowns take a turn for the worse? A potentially fatal turn?

In the late spring/summer of 2019, my meltdowns did just that. They became a threat to my life. I had hit my head and had so many concussions that landed me in the ER that my insurance company called to make sure I wasn’t being abused. No, I told them, I’m just autistic. My meltdowns increased in frequency and intensity. I went from having an inconvenient meltdown once every six months or so to having them once a month or shorter intervals. I have a scar from an injury I sustained during a meltdown. I won’t go into details because they may be triggering for some.

Needless to say, I was actively fearful for my life. I reclused and avoided all stress. Friends that didn’t understand autism were dismissed because I was too high-strung to properly educate them. What was going on with me?

At first, we thought it was my recent weight loss that was throwing off my balance. But when my meltdowns didn’t calm down as expected, I recalled that I had read in several blogs, articles, scholarly papers, and more that an autistic person may have an increase in meltdowns if there is an internal illness that has gone untreated. Cysts, impacted teeth, IBS, pituitary tumors are just a few to mention. This isn’t only in non-verbal autistics — it can happen in autistics that are considered low support needs as well. When I read this, I realized that my nervous system may not actually be trying to kill me, but instead, it’s alerting me to something serious. I became an Autie with a mission!

I made appointments with my neurologist, primary care physician, psychiatrist, gynecologist, audiologist, and all the other specialists I could think of. I have had more MRIs, CT scans, and X-rays this year than I have had in my life. Not to mention the EEG and the plethora of blood work. I didn’t have any latent STDs, my pituitary tumor was well under control. I saw something in an old overlooked test result from years back that implied I may have low immunoglobulins, so I insisted my doctor look into that as well. My routine yearly checkups came around and I put off my mammogram because I had been so overwhelmed with the number of medical demands I had put myself through trying to find answers. I just couldn’t do it because I might risk a meltdown. I rescheduled it for December. A couple of months out.

The prior year, 2019, I felt a lump, thickening, something was wrong in my right breast. After some testing, I was told it was just dense breast tissue, so putting off my mammogram seemed a pretty low-risk decision. I went to my mammogram in December and four days before Christmas, I was told I had two irregular masses in my right breast. The timeline fits perfectly. They say by the time you feel breast cancer, it’s been in your body for two to five years. I can do the math, and if my body detected it in 2018 before I did, it would have begun to cause major meltdowns in order to warn me. However, I didn’t know how to interpret my meltdowns as a warning of impending medical trouble.

I went in for a biopsy and it was confirmed that I have invasive breast cancer. Even since my mammogram in December of 2020, it has grown. Soon I will be meeting with an oncologist to discuss surgical options. While I’m terrified, I’m also thankful. Hopefully, with treatment and healing, my meltdowns will subside and I can live peacefully again!

Meltdowns aren’t always sensory-based, and for me, they are rarely emotional. So when I was confronted with meltdowns that seemingly had no explanation, it was terrifying. I’m glad I have found the answer within as to why my meltdowns were so out of control. I hope this may be an insight for someone like me going through the same thing.

Getty image by Mykyta Dolmatov.

Originally published: March 23, 2021
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