- Welcome to a blog written by an autistic adult woman in her late 30's using words and images to advocate acceptance as well as awareness of those with life-limiting sensory processing disorder and resulting social and behavioral challenges.Thank you for visiting.
Wednesday, April 18, 2018
|The light spectrum ranging from Ultraviolet (invisible to the naked eye) to visible to Infared (also invisible to the naked eye). Google Image Search|
I'm going to go out on a limb here.
This "What's your superpower?" question has become quite popular.
"What superpower do you wish you had?"
One response by some autistic adults has been "Autism is my superpower."
I cringe, because I, being autistic, see my autism as anything but.
I am disgusted by how there is little tolerance for a middle ground or common sense these days.
I suppose if you went to college, are gainfully employed, don't have SPD so severe you can't go out into public without help, are married and even have kids, you will view your autism through mostly rose colored glasses. I say mostly, because I DON'T want to undermine the fact you do struggle to do what non-autistic people do with less or no effort each day.
If you drive, own a home, have friends, love dogs and are connected to your community-online and IRL, I am guessing that you will view autism as a processing error, "A Mac in a PC world".
It's people like me, the ones whose autism trips them up at every turn and decides every decision and limits their life, who get removed from the narritive.
We don't make phone calls, attend autism conferences or belong to support groups.
Someone is caring for us financially, emotionally and in some cases, physically.
We aren't disabled in such a way as to be institutionalized, but there is no way we could live on our own. There are too many "what-ifs" to consider.
Our families are terrified about what will happen to us when they are gone. My parents ARE gone.
I see those more physically and intellectually impaired thrive in business, knowing that there is a family member who has the skills to help their adult child begin a business.
I remark how happy I am for them, meaning it.
I feel bad for those who are worse off, such as the kids and adults being shocked into compliance at the Judge Rotenberg Center. I e-mail and sign online petitions- those of us who can't use the phone. I pray. I let them know they aren't forgotten.
When I speak to other autistic adults about my life, I'm surprised how I have to educate even them.
Autism is described as a spectrum.
On the light spectrum, there are six visible colors: red, orange, yellow, green, blue and violet (purple). Indigo is a shade between blue and violet that is held in debate as to whether it is a stand alone color. Gracias, Wikipedia!
Then there is that of which is naked to the eye. Ultraviolet rays, infrared rays, X-rays and microwaves.
Well, I'm somewhere on that spectrum. I'm invisible until I cause a burn.
That burn can manifest in the form of a meltdown or a blog post.
Autism is a DISORDER. You are only deluding yourself and denying other autistics their experience if you deny that autism is disabling to some degree, for anyone with it, or they wouldn't even be diagnosed.
For those who can't even afford a diagnosis and are desperately seeking one, for those needing autism related services and therapies, why should insurance cover something some genetically privileged people call a superpower, gift, identity *SOLELY*?
Obviously, having autism myself, I know about the positives, though they stand in the minority. I can bathe myself, clothe myself. I am credited with seeing the world from a unique perspective, for not being "run of the mill", as my dad put it. For the latter I am especially pleased-and troubled.
I don't have a "tribe". I don't have "a people".
As long as the neurodiverse populace keeps suppressing my reality and that of others, our narritives will remain overshadowed.
Sunday, April 15, 2018
|The author, a white woman with brown hair with pained expression|
CW: Mention of meltdowns, law enforcement, suicide, the criminal justice system
This is going to be a difficult post for me to write, because it will trigger memories of guilt, shame and "if onlys".
It isn't my intention to dwell on these negative feelings. I wish to present the facts accurately, without self pity or blame-shifting.
I have mentioned before that my autistic meltdowns became more frequent and (yes, I must use the v-word) violent in my mid teens.
For me, a meltdown occurs when:
1. I am physically and emotionally drained.
2. I am startled by a trigger sound (a shrill scream or a car horn or explosion)
3. Having to socially interact already bearing #1 and #2.
I have always been a take-charge person, impulsive by nature. My parents knew since my infancy that something wasn't right (and no, that isn't a put-down, it is a clinical observation about my neurology based on observed behavior) with me.
They lovingly pushed me to try in life, because people had me down for the count from the beginning. They were accused of spoiling me by holding my hand when I went downstairs, because family didn't understand that I had spatial problems on stairs. The school system tried to have me expelled very early on, because I could not blend in with the other kids.
I went on later, as many autistics, to be bullied by a culture that teaches their kids to predate on anyone who doesn't look, act or vote they way they do.
By the time I turned fifteen, I had been severely bullied by my peers for over four years, beginning in junior high. I went on to develop CPTSD and hyper vigilant anxiety as a learned response to literally having to watch my back for being stabbed by staples or pencil points, shoved into lockers or tripped. The years of screaming girls and slamming locker doors, fire alarms and tornado siren tests took their toll on my emotional, physical, psychological and spiritual self.
My dad suffered a ruptured aortic aneurysm which lead to organ failure and death at the end of freshman year.
My mom, a middle-aged widow, had to figure out how to move on with only one income as well as deal (without ANY parental support groups, chat rooms, forums or social media) with a still undiagnosed autistic teenager.
Before I began sophomore year, my mom took me to see Carousel. If you are familiar with the musical, you know there is a gun shot scene. Social stories didn't exist. I wasn't aware of the plot, so I didn't know it was coming until the actor quickly pulled the stunt gun and fired.
I was barely making it through the play as it was. The gunshot was the tipping point. I began covering my ears and progressed to punching my head, growling and groaning.
Intermission came, and my mom escorted me out, pleading with me to calm down.
I made it through to the end and we drove home.
Somewhere along the drive, I began sobbing uncontrollably. I was thinking of my dad dying, the gunshot startling the hell out of me, school starting and knowing I would have to communicate this to my mother as she would ask me why I was crying.
When she did ask, I got so frustrated that I began screaming and punching myself and the dashboard UNPREMEDITATED.
Psychiatrists tried to blame my anxiety and meltdowns (before and even after diagnosis) on unresolved emotions associated with my dad dying.
I have been told time and again by therapists that I know myself well. It's true. The meltdowns I had were stress, anxiety, sensory overload and being forced to have to communicate-not the sole result of trauma.
It is true that I had a lot of internalized anger, anxiety, low self-esteem and even hatred from the bullying I endured. I had and still do have a lot of insecurity not having anyone physically by my side when I go out into the shark tank that is life.
I didn't have a close relationship with my sister at that time. Extended family treated me with indifference or sarcasm. I stopped going to family gatherings the same year I had the UNPREMEDITATED meltdown as well as the *gasp* premeditated harassment letter to a bookstore I won't name to allow myself some privacy.
I am sharing this as I share my entire blog to be of benefit to others affected by autism (if you have autism, you are, for better and for worse affected by it) as well as non-autistics who wish to learn about it.
I began taking medication to manage my aggression and depression when I was a junior. Paxil and Depakote (antidepressant and anti seizure medications, respectively). I gained weight and was tired all of the time. I had to nap after school and go back to my elementary school bedtime of 9pm.
My senior year ended fairly quickly. A knife threat was made-simply because I wouldn't keep sharing my cookies at lunch. After this threat being repeated the next day, I called my mom and voluntarily walked out of school.
I told my mom I just couldn't go on being bullied anymore. I would rather drop out and go straight over to junior college and take a GED course or die, but not go back to school.
My mom talked with the school at length about what had happened. They worked out a deal to supply a teacher who was looking for some work after regular school hours (at no cost to us). I began homeschooling after a brief return to school (coerced by my psychiatrist) and a re-issue of the knife threat.
I also tried to jump out the spare room window and kill myself in January, 1997.
There is a classic saying with computers, "Garbage in, garbage out."
I had years of compacted garbage, like you see in landfills along with a brain that never knew how to process auditory input and a body that constantly had to be self stimulating "stimming" long before school and bullies.
The question "Which came first, the chicken or the egg?" can't be applied here. My autism was present months before I was born (which I have addressed in another post). My responses to the world I was born into were there. Had I been a non-autistic person whose dad passed away and endured the same bullying, I know I would have still had garbage in that somehow would work itself out.
This sets the stage for July of 1998. I had already been hospitalized for suicide attempts. I had endured the chaos of impatient first responders asking too many questions and yelling. I had endured wailing babies with wet coughs in emergency rooms, my mom holding my ears when my own arms were too tired. Noise cancelling headphones weren't something we knew existed then or was recommended to us.
Somehow, through youthful optimism that supernaturally surpassed my deeply despondent state, I had managed to go horseback riding with my sister earlier that day. I had already had a bad day as my trail guide sarcastically mocked me for not being able to stay on my horse when he was trotting. She gave the command for all the horses to gallop and told me "just act like you're having sex!" before leaving me, a virgin, literally in the dust.
I had to do what I had always done when being bullied or otherwise in some situation where I had no control over how I was being treated: I endured. I did it until I exploded from the internal pressure.
I have been sexually assaulted during a gynecological exam. I have been strapped to a backboard in restraints and left for an hour in an emergency room. I've been choked by my one and only boyfriend.
This July day in 1998 would be the climax of "garbage in" pouring out.
I only thought I was going to do something fun that evening at that bookstore, which was read a poem I'd written. I used to write poetry. Most of it wasn't great. Some of it was okay. It was a medium in which I let my creativity flow. It wasn't the edgy "slam" type associated with the 90's. It was quirky and self-observant. It was mine.
I called ahead as I always did to make sure that there was enough of an audience to have the poetry reading.
The manager had given me an absolute, something I have always needed in order to function. Abstraction doesn't work for me. Back then, I didn't think about backup plans.
Poetry readings weren't for kids, so I knew that corner would be quiet, though random screams and cries from elsewhere in the store could be heard.
I had my binder bookmarked with a post it note and a painting on canvas I had done with my fingers and acrylics.
I was excited. I was also hyper vigilant.
My mom parked the car. I made the mistake of going in ahead of her.
I walked to the counter and told the manager I had arrived for poetry night. He informed me that it was cancelled. I told him that couldn't be. I had called a half hour before and he told me "yes", it was on for 8pm.
I was anxious and confused. Had I been lied to? I was beginning to panic. Where was my mom?
The manager then escalated things. He yelled. He yelled in close proximity to my ear. I startled, my body jerked sharply as it always does when I am startled. The painting was out of my hand and toward the source of the startle sound. Sadly, it landed on the manager, hitting him in the head.
I knew nothing of needing a support person in 1998. I didn't know why I was always anxious and hyper vigilant.
What was autism? What was a meltdown? I didn't even know Rainman was supposed to be autistic! I had seen the movie a few years prior and never picked up on that word. I did think it was a coincidence that he covered his ears, banged his head and screamed when his brother yelled at him, informing Ray that they wouldn't be flying Qantas.
The manager informed me that he was calling 911. Shaking, looking toward the door, hands over my ears, I wondered where my mom was. She had still not come inside. Should I run away? I could see the Honda Accord outside, near the end of the parking lot. I ran, out the door, to the car. I told my mom to leave. I told her I hit a man and that he called 911. I couldn't explain any more than that at the moment.
She drove us away. If the police came, we never saw them. The sun was a tangerine red as it set in an orange sky. It reminded me of my pre-regression childhood, when I could still go on vacations to California. I had auditory related meltdowns at Disneyland, but I didn't have hormones and I didn't have much "garbage in".
Later that night, I felt sorry that I had hit the man, but I was also angry at him, angry at the entire world. This garbage was as big as the dump in "WALL-E" and I could not sort through it. I wasn't aware I was full to the brim, spilling over and acting out all the toxic waste dumped on me for years.
I decided I would scare the man. Here is where the premeditation comes in. This is post meltdown and not something that happened because I had (undiagnosed) autism. Autism doesn't make one a criminal. Autism does make how one responds to sensory input and social interaction challenging.
Autism plus years of internalized abuse did make for the perfect storm of something I never thought I'd be capable of doing: retaliating.
That night, I cut out a picture of grilled shish kabobs from a magazine and glued it to paper. I then wrote on the paper something to the effect of "If you aren't careful, your customers will end up like this." I then made the mistake of dropping it into the US mail. It turns out that one can be traced even without leaving a return address and charged with a felony.
That is what happened a few weeks later when my mom and I went to leave the house. I was approached by a female detective and placed into a squad car, driven to the police station of the town where the bookstore was located and booked. I remember how blissfully quiet it was inside. An officer squeezed my hands very hard as he pressed them into black ink and then pressed my fingers to the paper. I think I may have smiled when my picture was taken, because that was what I was always told to do when a camera was pointed in my face, "smile!"
The detective informed me of the charges. She told me I was one of the most polite and nice people she had brought in. She got me a cola and then I was placed in the holding cell.
My mom made my bail, which was $100. I was surprised given the fact I was being charged with a felony, but I had not yet been convicted.
I was so ashamed as I went over the past few weeks. I had told my mom to leave me there, that jail is what I deserved, where I belonged, at least until my trial date. The detective jumped in and told me no, jail wasn't where I belonged. I belonged at home until my trial date.
I decided to voluntarily admit myself to the psych unit of the hospital I was affiliated with at the time. My psychiatrist recommended a lawyer. My grandpa offered to help with any expenses my mom couldn't pay, and we endured a noisy trip on the Metra commuter train into Chicago. My mom had to bang on the door of the next commuter car, saying "Help! Open up!" The car we were in had 3 tantruming children running up and down the car.
The attorney helped me avoid going to jail. The judge, upon reading some of the poetry my attorney told me to bring, uttered the prophetic words, "How could someone so smart do something so stupid?"
I was convicted of 2 Counts Misdemeanor and not given probation or community service.
That sickened me about the community service. I would have gladly done something, but due to my sensory processing, there was nothing available. My SPD negated redemptive overatures. I was told not to contact the bookstore for two years. I never contacted them again or will I ever do so.
I was diagnosed with "autistic features" in October of that year. A diagnosis of "Asperger's Syndrome" followed during a psychiatric evaluation in 2004.
I was relieved. There was a name for why loud noises caused physical pain in my ears and made me jump. There was a name for the quirky, awkward behavior as well as the challenging and sometimes frightening behavior.
If this post isn't a reason to RETHINK the message some autistics proudly proclaim "Autism is my superpower", as if autism is this awesome, life-enhancing thing *only*, then somewhere you have failed. You need to listen to other autistic voices as I have *sigh* and agree to disagree.
If you think I used autism as an excuse for the mail job, go back 3 paragraphs and re-read. I have empathy and remorse. I have the desire to make sure I never cause anyone, myself included, physical (or any other type of) trauma. I lead a seriously low-key, low exposure life.
I have worked VERY HARD since 1998. I have been hospitalized more than 20 times, I have taken numerous drug cocktails, exercised, worn pink noise sound generators in my ears for a year, gone to therapy 1X a week up until 2010, sometimes my mom driving an hour in an aging Honda Accord. I have had to learn to be mindful of when I am saturated emotionally, physically and sensory and flee the area with the utmost intensity if necessary.
My autism took a huge toll on my mom and yet time and again she would look at me and say, "I'm glad YOU are my daughter."
King David did something far worse than I did. He not only committed adultery ( 2 Samuel 11) with Bathsheba, but plotted to have her husband, Uriah, killed, successfully. Adultery alone was enough for the death penalty under Mosaic law, still, God called David a man after His own heart. God forgave David. He could see that David strived daily to put God first in everything he did. I can't even claim to be as fervent as David. I certainly was much less so as a baby Christian in 1998.
God had mercy on me then and he does now. My hope in writing this is that there will be more understanding and mercy regarding autism and autistic behaviors. It doesn't mean encouraging violent behavior. It means treating, not criminalizing the autistic individual, recognizing that we live in a very loud, chaotic, unpredictable world we cannot fully adapt to. Some of us will remain stuck in their parents homes while others languish behind a mask from nine until five.
Perhaps, if there is *ever* work from home available that doesn't require the use of phones or STEM super skills, I will be able to receive help from my department of rehab. I will need it. The two-decade old record still stands. For now, figuring out how to get my Medicaid back and plan financially for my future, which I will most likely live out in later years alone, as the youngest member of my family.
I dream of an assisted-living type of place free of children and dogs. Renting my own small apartment, locking my own doors. A building free of fluorescent lighting and cigarette smoke with a community room in which residents can voluntarily participate. Maybe there is a place for me out there this side of glory.
Saturday, April 14, 2018
|Image: Rainbow colored forward arrow Pixabay|
So far, I am doing well. No need to leave home or use a phone. I can rock. It takes time and patience in completing each survey. Sometimes a survey ends while I'm still completing it or I don't qualify based on the way I answered, but I still get points that I can eventually redeem for gift cards or Pay Pal cards. I can use those cards to buy things we need in our household.
I am moving forward, even if it is through quicksand.
I'm accepting where I am in life. The mourning phase is passing.
I may not get the more inclusive life I hoped for since literally walking out of my homeboundness in 2010, Pro Ears Ultra 33 earmuffs clamped to my head, but I can say that I have tried and will keep on until God calls me home.
*Scams abound with survey sites. I Say (by Ipsos) gets good reviews. I've not been compensated by Ipsos to say this.
Saturday, March 24, 2018
|A Polaroid with light leaks and fade. Misconceptions|
and stigma associated (conceptual photography)
"You're pretty high functioning," you say, shaking my hand (I can do handshakes),
I realize you probably want to make me feel good about myself.
Your image of an autistic person might be of someone non-verbal, perhaps in a wheelchair, whose focus is elsewhere.
You are correct-in part. A very small part.
I'm sure you have heard that autism is a spectrum. You've been made aware of autism, but you don't have a complete picture. Your concept is like a bad photograph where only part of the film got exposed and the rest is light leaks of yellow and red.
It isn't your fault. You aren't autistic.
What you likely know about autism mostly comes from the media, which often relies on doomsday scenarios filled with no light at the end of the story's tunnel.
"You seem pretty normal to me."
In the here and now. In this room, one of my favorite rooms. It is the living room, which my late mom painted a sea foam blue.
It is overcast outside, lightly raining. The lights are low and my DOHM white noise machine is on in the corner closest to the window where the rowdy neighbor dogs bark.
But they aren't barking now. Light rain is patting on the roof. You marvel at how quiet it is inside.
"My parents had thermopane windows installed in the spring of 1992," I say, rocking in my chair.
Maybe I seem a *little* autistic, but certainly not "low functioning", you think to yourself.
Take me out of that room. Take me to a shopping center during the Holidays. Stressful for everyone, right? Especially those poor, screaming toddlers who I'm sure are scared they are about to meet their doom at the hands of the bearded guy in the red suit.
Observe me now, noise cancelling headphones on. My posture is rigid. I'm probably rocking back and forth in place. I'm not answering when you speak. I can't hear you anymore. There is an angry expression on my face (I'm told I look angry when I'm stressed).
It's the same when we go out for lunch at a supposedly quiet restaurant in the afternoon. My stomach is in knots. I'm preparing for incoming auditory sensory overload. There is always that one parent who brings a child young enough to sit in a booster seat. At least one time during that visit, a squeal or two rents the air and I visibly jump.
Dishware clatters somewhere in the background and our waitress is there, but I cannot advocate for myself and we wind up leaving.
We walk along a street. A car honks. A dog barks and pulls at his owner's leash-one of those retractable ones that allows him to get too close.
All of a sudden you witness the woman you once met in the sanctuary of her living room screaming and hitting herself and wonder-is she just overreacting? Does she want attention?
If you wanted attention, would you publically humiliate yourself without premeditation?
I'm not in control of my body right now. I am not in control of my sanity. There is too much sensory information coming at me faster than I can process it.
I see you pull out your shiny smartphone and slap your hand until it clatters to the pavement. Cell phones and meltdowns mean one thing and one thing only: police. Police yell, shove and ask too many questions. Sometimes they put me in the back of an ambulance.
We eventually manage to make it to your car.
Three weeks later, I text (not call) you to thank you for taking me to lunch, for not calling 911. I explain that meltdowns are so traumatic to me that I can take weeks to return to a completely calm and logical person.
I'm sitting in my sea foam blue living room, rocking in my chair. I'm safe. I'm in control of my environment. I can make sense of things again.
We don't see each other again. "We are on different planes." you say. You thrive on a multiple sensory environment. You feel robbed if someone doesn't make eye contact with you while conversing. You live on your own and have a thriving career.
I live with my family member and cannot support myself.
You've had quite an education. The contrast between meeting me in my living room and the restaurant will play out in your mind for some time.
Maybe you will see a feminine, artsy woman rocking the boho look. She may have a friend or maybe it's her sister with her in a store or restaurant. Her fun, carefree adornments make her seem like me, back in my living room, before we went out for lunch.
Then, she begins to rock back and forth in place, crying. You notice other people whispering and staring as you try to avert your eyes out of new found compassion. You wonder why they're being so obviously rude, even though the lady can't see any of that. The other woman guides her out of the danger zone, not yelling or grabbing, but firmly announcing "Let's go get some air." Not a twinge of judgment in her voice.
You smile inside, your judgment dissolving. Maybe we won't see each other again, but you are better for the journey for having known me.
I have to believe that.
|The author in Polaroid frame|
Misconceptions cleared up.