Till Death Do Us Part

Photo by Josh Willink on Pexels.com

Today, I am compelled to the keyboard with a heavy heart. We once again have “mercy killing in the name of love”. A mother, to use the term loosely, killed her son because she was stressed and overwhelmed by his Autism. In the past years, there have been increased news reports of parents killing their Autistic children. Why?

Now I’m not one to simply say it’s just an increase in occurrence, just like I’m not one to believe that “compassion murders” haven’t happened before now. They always have happened but the reported frequency has been increasing in recent years. I would like to say this is because we have more awareness of this insidious behavior but the responses that have always been the same from the ableist, typical, non-disability crowd have proved otherwise. That is overwhelming compassion for the murder(s) because they had it hard as a parent or caregiver. Nevermind the fact that the disabled person is the victim of abled egoism and homicide! Oh, think of the horror to perish at the hands of the only person you trust on the planet! The general public romanticizes unsolicited mercy killings, but at what cost?

In a very tongue in cheek way, I am going to say it’s my Autistic Empathy that reasons that when a person engages in consenting acts of sex with the intent to reproduce, the lack of concern if they are to conceive offspring because they feel that they are ready to be parents or even just accepting you are pregnant and choose to keep the pregnancy, you enter a covenant with the child/ren that you have conceived (or adopted in some cases). It’s an eternal agreement with nature and whatever higher power you may believe in, whether moral, ethical, the universe, or religion, that you help that child thrive. In times where the child is born disabled, it’s a covenant that we all should honor until we leave this Earth.

We have an entire section of society that frowns on terminating viable pregnancies even if there is a disability found prior to birth, however, this pro-life outrage is often absent in the wake of a mercy killing. If one is not for terminating a pregnancy on the basis that it is still a human why are we okay with killing a postnatal 10-year-old with a disability? The answer is simple and can be explained with the boiled frog metaphor.

A “Cliff Note Explanation” for those who did not click the link! There is a myth, or fable if you prefer, that if you put a frog into a pot of hot water then that frog will jump, fight, and try to flee for its life but you put a frog in a pot of frog friendly tempered water and gradually heat it up the frog will allow itself to be cooked to death.

This is exactly what is happening with society in regard to mercy killings! We relate and feel bad for the first one we heard that made national news, often it’s a romantic expose on a husband that killed his wife “out of love” and not being able “to see her suffer”. The next one, well, it’s not as bad as the first or it may be worse than the first, either way, you reason, they were under stress as well and people act out of character under stress. You understand how someone would kill an adult child that was afflicted such as theirs was. The disabled adult is in a better place now. Soon, we learn of another carer snapping under duress and murdering a loved one, a child, and we feel for them, relate, empathize. You reason that the other two were acceptable and so this is as well. You can see yourself in their position and your heart aches for them, that they had to make that decision.

Years, go by and we keep hearing of these heart wrenching decisions. All of the abled society deems it necessary that these are acceptable murders that should be forgiven. You’re consider yourself pro-life and against abortion and assisted suicide but thoughts turn to the disabled in your own family. The last time you attended a March for *Insert Hypocritical Cause Here* or convention your Autistic child made it impossible to be there. They were clearly in extreme distress and you just “can’t watch them suffer anymore”. Instead of doing what is rational and logical in the name of love which is adapting to them being in your life by adjusting your lifestyle to enable them to thrive, your mind turns to murder for mercy. You’re a martyr in your plight and God and society would understand! You focus on your perception of quality life, you don’t consider that this person, this human that loves you and trusts you to cherish them and help them live may not even perceive themselves as in need of death to escape. All they know is that when you enter the room their heart soars. 

I will end this entry there because without saying the people that have allowed themselves to be peer pressured into seeing the murder of the disabled as acceptable are incorrigible monsters. We may have a disability but at least we aren’t morally inept.

Until Death Do Us Part may we all join hands and enable each and every human to survive regardless of life circumstances.

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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.

My Autism, A Legacy

Grandpa’s Garden Now

Autism is surrounded by much controversy as to what causes it. Is it vaccinations, no. Autism predates vaccinations. Is it abuse, no. The best parents in the world can have an Autistic child. Environmental, weak at best. As soon as a family changed environments they wouldn’t have another Autistic child yet often they do. Pollution, no. Autism emerged when pollution was drastically lower than it is now. Then what causes it?

In 1943 Leo Kanner, the first person to openly observe and publish studies on Autism, also noticed the same eccentricities in the parent’s of the child that the Autistic child exhibited. Mr. Leo Kanner correctly thought that the condition was genetic even though he would waiver to and from that belief throughout his lifetime.

When I hear that the person who first recognized and studied Autism originally thought that Autism was a genetically inherited uniqueness, I get chills. I can recall, quite clearly, the two people who raised me from the age of two to the age of eight. My Grandparents. They are the perfect example for the argument that Autism has a strong genetic component. Both of them were loving and introverted, for the most part.

My Grandma was a quiet and compassionate woman. She didn’t have many friends but she did have her routines. Up in the morning, coffee, breakfast, daily obligations. Then she would rock in her rocking chair while watching the same shows she did the day before and the day before that, as she sipped her wine. Her Rocking chair, that was her favorite chair. The only place she sat. My dear Grandmother also walked on her toes, a trait I possess. As an adult knowing the quirks of Autism I now know that those were her stims and I smile. She is part of me.

My Grandmother had additional symptoms such as Sensory Processing Disorder, undiagnosed, but with twenty-twenty hindsight it’s obvious to me. She had an exaggerated startle reflex to loud or unexpected sounds. They clearly gave her anxiety. She had moved out of my Grandfather’s room, or removed him from hers, I’m not sure which, because his snoring kept her awake. (In all fairness he was a champion snorer and you could hear him everywhere!) However, everyone assumed it was because she held a grudge but no one knew what it was, I’m thinking it was just about the snoring. Grandma’s bedroom also had blackout shutters turning her room unnaturally dark, even in the daytime. These shutters were also installed in my room as they probably recognized my sensory processing issues as well. Even if they didn’t know what it was they knew I needed more darkness than other people night to be able to sleep. As a young child I would climb into bed with her. I have faint, but happy, memories of her carrying me down the hall back to my own room. Now I know it was because she couldn’t sleep with a tossing and turning 4 year old in the same bed with her. 

She also had a peculiarity with collecting bread bag tabs, twist ties, and plastic tv dinner trays when they became more common. She claimed it was because she was a child of The Great Depression and they kept everything just in case. But bread bag tan closures? I think it was Autism.

Grandma was also very logical for a woman and applied knowledge to life. There was a time when nonverbal me was fussy because of a tummy ache. So what did she do? Instead of fawning over me and trying to appease my irritability she crouched down to my level and gently put pressure on my stomach and on my back with her hands. This caused the gas that was giving me pain to escape in a rather loud passing. This caused her to smile and asked me if I felt better, I nodded, I did. When I was 17 and “dating” I showed her a picture of the boy I was seeing and referred to him as my intended. (I was really into older works of literature so I’d borrow archaic terms and words from them). Grandma didn’t get “girly” like other women by saying he was cute or asking how we met and wanting every emotional play by play. No, she instead infomed me on the meaning of the term “my intended”. It was only after my telling her I was aware that it meant the person I was going to marry that she became upset because I was too young.

Oh, Grandpa! Grandpa was intelligent. Scientific. Loving. A collector of objects, lover of radios, and a fan of knowledge. A believer that faith and knowledge could exist in harmony. My grandfather loved fishing and everytime he would go he would bring back gravel from the locale he had visited. He would store his collection of gravel in coffee cans in the Garage on a shelf above his work bench. Each one labeled with masking tape and Magic Marker what it was, where it came from, and what beach. All uniform, all organized. 

My Grandpa was also the collector of knowledge. It was he who taught me about the Greek Gods. He had books on everything from fish to mushrooms. I used to look at his books in awe at the array of color that this world has provided for us through flora and fauna. My favorite was the book of fish and pictures of the deep. I was a water baby, loving the sensory control it provided when I was submerged. So I would imagine what it was like down there at the bottom of the ocean. Safe and alone from the world above.

Grandpa had extensive knowledge, no doubt about that, but he had two narrow interests that I can vividly recall. His garden and his radio. He would spend hours on both of them. His garden had everything in it. Tomatoes, squash, eggplant, green beans, corn and more. It was magnificent! He’d spend summer days picking bright green, horned, worms out of the tomato plants. Behind the garden were orange, lemon, and grapefruit trees. A Loquat tree and strawberries also had a place in the yard. He knew everything about gardening and even had made the side yard into a greenhouse complete with a compost bin. My Grandpa loved different vegetables and even would brine his own olives. Perfectly content to be by himself. Like I am.

When he wasn’t gardening you could hear Grandpa on his radio in the garage. Click, click, click with the Morse Code. The crackle of the static. Maybe a beep or two. He would make friends this way. Much like the Autistic community has found connection in chat rooms and on Twitter my Grandfather found connection through the air waves of the 1980’s. I know he had a friend in Russia and a few in Canada. He was of Hispanic descent and loved learning about different cultures and sharing his. Much to my Grandma’s dismay, he also treated me to freshly fried, hot, chicharrones. Fried pork rinds which she thought were disgusting! They were delicious.

To me, in my memories, both of them were clearly on the Spectrum. They both had narrow interests, routines, and stims. They both were perfectly content in solitude. Neither were especially physically affectionate but they knew when to give hugs and when not to. They were incredibly loving and empathetic in a way that I understood even if others didn’t. I saw evidence of Masking (a form of “acting” that Autistic people assume so they fit in with Neurotypical people/society better) in pictures and other relics of family history. Like my Grandma attempting to sell Mary Kay. My Grandfather portraying himself as a ladies man in old home video reels. All of it. Them. They are where I come from. They are my genetic code. They are the people in which my Autism flows from. Autism is my heritage, my legacy and I cherish it because it connects me to them.