Hints Autism Gives Us

We have all heard of the dreaded meltdown. I’ve written about my own meltdowns and how I view them. Those moments of terror in which we become a force of nature while our nervous system purges all of it’s stored anxiety. For some of us, we have triggers where the anxiety is instantaneous. For others, we have a tipping point in 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 and I will reach a tipping point, as mentioned above, and out it, all comes out. I have no control over it. (Meltdowns are involuntary for those of you who don’t know.) 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 your meltdowns for no apparent reason takes 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 6 months or so to having them once a month or shorter intervals. I have a scar on my left wrist where they had to go in and reattach ligaments that were injured during a meltdown. I won’t go into details of the rest 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 the symptoms of 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 it 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 went untreated. Cysts, impacted teeth, IBS, pituitary tumors are just a few to mention. This isn’t only in non-verbal Autistics either! This 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 MRI’s, 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 STD’s, 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 immunoglobulin’s 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 4 days before Christmas I was told I had two irregular masses in my right breast. The timeline fits perfectly. By the time you feel breast cancer, it’s been in your body for 2-5 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.

Last week 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, 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 and I hope beyond hope that this may be an insight for someone like me going through the same thing.

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My Coming into Autism Story

They are sorely short on Autism pics so you get this!

Like all Autistics, I have never fit in. Ever. I can fake it pretty well but something is missing that prevents me from bonding with others. A few hangouts or dates and they usually bail leaving me in the wake of “What the hell did I do this time?” I knew it wasn’t me as I always intended the best for everyone, I tried so hard to click. It never worked with females (the term was chosen because it doesn’t denote solely those assigned female at birth) but I was better at being friends with males. Which, as a married woman, complicates things. So I just remain lonely and for the most part friendless.

I have separate Medical/Psych records that note my lack of eye contact, reduced facial expression, and several other Autistic tells that no one was able to hear. If Autism Speaks why then did no one hear it for 37 or so years. Simply it’s due to people not wanting to hear it. I even walked 2 miles to the ER to try to get help for what I assumed was PTSD and was told that I was the problem. I have some strong words for that but I’ll not mention them. I tried to tell them that I was about to have an episode in which I would not be able to prevent myself from hitting my head. Still. Nothing. 

In 2017 I joined forces with my Husband and his Nephew who was itching to start an online Church. We were sick of the crap that was getting pumped out into the World after Trump was crowned King and we decided to fight the good fight. I was chosen as the face because, well, I’m attractive compared to them I guess. About 4 sermons into the formation of said Congregation I started to have a huge, monumentally huge, panic attack. I had one person watching at the time and I knew who it was. I was prepared. I was safe. Medicated for Anxiety. By all means, I was not in a position to have a panic attack from PTSD. This isn’t my Modus Operandi. I felt sheer dread, I was rumbling and about to Meltdown. The next weekend I couldn’t even turn on the computer. I was experiencing a Shutdown, a term I wouldn’t be familiar with for some time. Something was up that was far beyond anything that could be Therapized out of me and I was certain I knew what was going on. I had realized that I had had Meltdowns before.

That week I told my Therapist what had been going on and asked her something I had suspected since 2010. My nephew is Autistic and I think I’m Autistic as well, what do you think? 

Her reply was, “I have noticed some things but if you are you can’t be very Autistic. Just a little bit, if anything. Do you know Sheldon from The Big Bang Theory?” 

Me, “Of course that’s my favorite show! I’m not as social as him though. I don’t even have as many friends as he does.” 

Therapist, “Exactly, he wouldn’t be either if he was Autistic in real life. He’d never be married or have that many friends.” 

My awesomeness, “Do you know who could assess me?!” 

Therapist, “No”.

I left with Sheldon wouldn’t be as functional and neither would you but she agreed that I should be assessed.

The search for someone to diagnose me was in my hands because it’s incredibly difficult to find someone that will do an adult Dx and I hate talking on the phone, so, naturally! They make it as hard as possible for those whose parents didn’t bother to look into why their kid was weird! The lack of consideration and respect for me as an Autistic was front and center. Thankfully my IQ is high so I was able to find someone in an efficient timeframe. (Anyway, that is what a Psych would tell me.) 

I found a place that would take my insurance and assessed adults. It was a Godsend having the entire bill covered through our insurance and I feel so blessed because of that. Seriously, that never happens! But my state passed a law that increased the accessibility of Autism services to those who needed them. So I made an appointment. 

(Please note that if I had not been awarded SSI and been put on Medicaid I would not have been able to afford the 850.00 bill for the assessment even with my husband’s insurance. I’m not privileged, I’m disabled.)

It was in the middle of the Christmas season in 2017 that my first half of a 4-hour assessment was scheduled. When we got there I spilled my coffee and felt horrible.

She looked at me and said “Most of the time when someone your age comes in looking for an Autism diagnosis it’s because they have a family member that was diagnosed and/or they have done extensive research themselves and already know that they are Autistic. Tell me why you suspect you are Autistic.” 

I let it all out. I walk on my toes! The notes in several medical files that say I can’t make eye contact. The times I have tried again and again to make friends. My laughing at (it was really with but I didn’t know she wasn’t laughing) a friend in pain. I didn’t know she was in pain. To me, it sounded like she was doubled over in laughter. I still cringe over this!

Fun Fact: In the middle of my assessment my Doctor looked at my husband and said that she thinks he needs to be assessed next. A year later he received his Autism Dx!

I relayed to my assessing Psych how I would misread faces. To me, someone suppressing laughter and someone being angry, at times, can look the same. There’s the embarrassment when people walk away mid-sentence or conversation because I took too long to process the information and produce an answer. I was insanely quiet. Always assumed to be shy. (Once you get to know me though you can’t get me to shut up!) The one that took it though was that I didn’t speak until I was four. Four! Again, I ask, how was this missed!

After the first session, I was exhausted. It was Christmas and Christmas is hard on me when it comes to overstimulation. I melted down that night because of the 2 hours of assessment and all the Christmas cheer that was forced onto my nervous system in Walmart. I almost canceled the whole thing out of doubt but I went back for my second session anyway. 

I wanted to hide, the coffee stain was still there, I obsessed about it. This time she ran me through a battery of puzzles, simple math equations, memory exercises, and other tests. I found out that if I don’t have to think about the mathematical formulations that I can make an educated guess and guess the solution accurately. I have incredible lingual abilities which were probably learned out of the desperate need to communicate effectively. (It didn’t work. Being more proficient with words just makes people think I’m a snob and know it all. I’m not. I just want to connect.) I was able to logically deduce people’s state of mind even though I can’t intuitively pick up on things. (Ex: Crossed arms means someone is guarded, mad, or cold and I can analyze and extrapolate information from clues. Not always correctly.)

When I came back for the results she told me Autism was exactly what was going on! Oh! I was so happy but I didn’t show it because I don’t show my empathy outwardly as much as Neurotypicals even though I have plenty of empathy for people. I have a great IQ, which is what the second session was about. She explained that the IQ test was simply to rule out any other conditions that may give the appearance of Autism such as an intellectual disability, which I did not have, I was quite intelligent. I am a bit slower at learning but I also retain more information and in the long run can learn things better and more accurately than others therefore can carry out a job more completely and satisfactorily in comparison to my NT peers. (Even if it’s annoyingly accurate because I have problems deviating from what I’m taught and what I’m used to.)

In the end, I was given a Level 1 Autism diagnosis which used to be called Asperger’s. It gave me answers upon answers. Look no one wants to hit their head it’s messed up but I had a reason as to why I hit my head. Why is this?

It was because I was Autistic. I am okay with that.

Life at the Corner of Ableism and Sexism

Wasabi Horseradish is not a Pea!

Six or seven years ago I had a little disagreement with my significant other and a familial male of mine. The contested information was that Wasabi is a Pea. Which it is not. Wasabi is a type of horseradish that grows in Japan. Most of the Wasabi in the US is regular horseradish dyed green with food coloring. My SO sided with the other male when the other male doubled down on his statement. I dropped the subject and shut my mouth because that is what I am supposed to do. Right? Don’t question men and look pretty.

As a female assigned female at birth I have learned by trial and error that women aren’t to correct men. If women are right and men are wrong we aren’t to point it out. When men make a mistake because they didn’t listen to the woman’s advice we are to tell them they were right anyway. Men lead, we follow. It’s a tale as old as time. However, when it comes to Autism in the eyes of the world it decreases your credibility despite evidence to the contrary. When you have a vagina, it’s worse.

Many people on the Spectrum have an average to genius IQ including the women. However the way our brains process information and auditory delays lead people to believe our perceived “slowness” is equivalent to having lower intelligence. You include the fact that I’m short, cute and curvy in the mix and we have a cocktail that is disastrous. 

I know things because I have the same hunger for knowledge that men on the spectrum do. I knew the information on Wasabi was wrong because I had read about the rarity of Wasabi that naturally grows along the rivers and streams in Japan. (Fun Fact: Most people in the US have never eaten actual Wasabi!) I’m a Sushi lover and if I love something I will research the everloving heck out of it! But that didn’t matter. Instead of hearing me out I was shut down. This is a pretty normal thing for me to experience. I hate it.

I feel for my Aspie Sister’s and how we have valuable information to share with the World yet we are marginalized by society. First and foremost because we are female. Second because we present information in the common Autistic format. Straightforward and factual. Which then makes us seem like a disagreeable female. Which is heart breaking and it needs to stop. 

While I would like to say I have a revolutionary plan to change the World once and for all, I do not. The best advice for the World is to assume egalitarian ideals across the board. The old adage of not judging a book by it’s cover comes to mind. A pretty face can have an equally intelligent brain. Slowness might not be a sign of lack of intelligence but the work of a mind that has so much information in it that it might take longer to produce an answer. Like a computer with a full memory. The two together can be a deadly cocktail or a wonderful resource. Ultimately it’s not up to women or Autistics to decide. It’s something the World has to embrace. I hope they choose wisely.