Autistic Confessions – Easily Startled (Too Much Anxiety)

I’ve got a trigger-hair panic reaction. Its like my startle response is tuned way up higher than the average person. I try very hard to control it but I am still easily startled.

When someone drops something, pops a balloon, closes a door, or makes any other sudden sound it makes my heart race. Adrenaline pumps through my body and by breath speeds up. I practice slow breathing concentrating on my feet and breath willing the panic to stop – but why does this happen so often?

Its not just sounds that set off my fear response. I feel like things around me are constantly triggering it. For example catching something unexpected in my fiend of vision is equally disturbing.

Other things that make me panic are surprises, not knowing what is going on, and conversations with strangers. Any time I have to speak using words in a meeting, even if it is a one on one meeting, my armpits and hands sweat as my heart races.

Although I am always fighting this invisible battle, it’s like panic is my default response to things. Nobody sees me stress but inside is a tornado of emotions. Desperately I seek control of the whirling monster  inside of me.

The anxiety is always trying to overcome me and it is constant. I have been living in a state of anxiety for most of my life – it should be no wonder my health is not great. The toll it is taking on me is becoming more and more obvious.

There are certain things that ease me, writing, exercising, creating, learning, meditation, and long walks. I am working hard to calm the beast because I worry my anxiety may be the source of most of my issues.

This is a fight I have to win.

Overwhelmed Meltdown to Burn Out – A Poem – Guest Blog

A stone in my throat
Left and right brains beat swiftly
Needles prick my nerves
Tingling nerves in whole teeth
Mind blank out
Numbness envelope whole head
Tears well up turning to
Uncontrollable tears draining my face
Dripping down my chin
Unintentional wrong
Lead into drown into the abyss of sea
Struggling to swim up
Heavy stone body pushing me deeper
As my hand lifting upwards
During daytime
Sudden loss of energy at my hands
Palms lose strength to grip
Noises
Every light footsteps
Pulling of chairs
Shouts
High pitched voices
Distract my focus
Messages
Apps
Notification tones
Breaks my concentration to pieces
Awakened from sleep
Heartbeat rhythms pounding faster
Pulling nerves at my rear skull
Tingling nerves and pulling backwards
In the temple of my head
Explosive pressure in the top of my head
Either in my half-right head
Or in my half-right head
At times squeezing my whole head
As sense of burning in my head
Perspiring in the cold room
Pulsating head temples spreading in whole head
Gasping for breathe
Calling out to Jesus for help
Looking to my Lord for His healing
Crying to Him from inside
– Yoshiko (Diagnosed at age 34)
Please check out Yoshiko’s blog for more great content.

Autistic Confessions – I Just Can’t Do People Today

Sometimes I have days where seeing another human being seems like the most draining and intimidating task in the entire world. These are the days when I just want to stay home and speak to nobody.

There are days when I need to recover from all the excitement and bustle of professional life, sitting in silence barely saying a word outside of typing on my keyboard. Days like this I spend at home – my dog and husband are the only creatures I want to see. Sometimes, as I conserve energy, even these interactions are at a minimal.

Every now and then there are times when I don’t feel like talking. I avoid conversations and crowded places. Please don’t take it personally when I conserve energy.

How Could the World Be More Autism Friendly

Those who know me, and the readers who’ve followed long enough, are well aware that I like to focus on the positive. My last post was not the happiest because life has been hard and it is wearing on me.

We’ve been having conversations in the comments on this site and on Twitter. Talking about all of the problems and hardships Autistic people face in the world. In general I feel like focusing on your problems all the time can be a very dangerous thing. Shifting our attention to solutions tends to be much more effective.

Today I would like to write about my dream world – a world that is more friendly to Autistic people. Maybe some day, long after I am gone, it will be a reality.

It is a beautiful place, where there are always quiet spaces to get away when you need a private moment.  Every light switch has control for the light level and temperature, because everyone’s brain needs different lighting. (I like red-ish light and can not handle bright white, blue, or green). Natural light is used whenever possible and working from home is always an option.

In the place of my dreams you are always aloud to carry a laptop for notes, people don’t mind sending instructions via email, or handing everything over in writing. People wouldn’t call last minute meetings and would stop insisting on phone calls when an email is a perfectly acceptable form of communication.

Work schedules would be more predictable and people would not ask you to stay late for extra tasks at the last minute. (I just need to know when something is over – so I can conserve the perfect amount of energy.) Shifts could start at the same time every day and end at the same time every day (when you have insomnia one night working till midnight can throw off your entire week when you normally wake up early.)

Job descriptions would be more accurate so it is easier for us to determine in advance if we are qualified for a task. Employees would have input when job descriptions change and would be able to turn down new tasks that don’t suit their natural abilities.

Multitasking is a word that would disappear in my new world. Focusing on one thing at a time and doing it perfectly is far more efficient than doing several things at a time half-assed and in a rush. People would stop rushing you, and asking “can you multitask” in interviews – since most people don’t truly multitask very well even without Autism (even when they THINK they do).

Windows in large buildings could actually be opened so fresh air could be allowed in. Offices would have space for people who get cold easy and people who get hot easy so everyone could be comfortable.

Regular breaks would be encouraged and standing desks and exercise ball chairs would be more widely available so people don’t have to sit stagnate all day. Employers would stop valuing their employees based on how many hours a week they work and would focus more on dedication the quality of work turned in.

Office politics would disappear and work ethic would have more value than who’s ass you kiss. “Optional” work functions would really be optional (meaning your boss would never make comments like – “You weren’t at the last 3 office happy hours.” If something is necessary for a job it would be explicit not implied. If the happy hours are mandatory they should just say so.

Most importantly in this perfect new world everyone understands and accepts Autistic people. We don’t have to depend on unhealthy coping mechanisms like “passing”. Nobody expects us to act like everyone else.

It is a dream I have, a magical world. Some day I hope the world becomes more Autism friendly.

Autistic Confessions – Some Days I’m Completely Overwhelmed & Want to Quit

I never thought things would get this big when I started my blog. Less than 2 years ago I wrote my first blog post. At the time I had no idea if anyone would ever read what I had to say.

Part of me hoped that nobody would because the things I wanted to talk about were my biggest secrets.

Still I had to write. Since discovering and accepting my Autism I had been reading, studying, obsessing, watching videos, and learning. There was a lot of information out there that was not consistent with my own experience or the experiences of the Autistic writers that I had found online.

Something began to stir.

Part of me was screaming out “you’ve got it wrong!” Too many of the wrong voices, doctors and parents, were speaking. More non-Autistic people were talking about living with Autism than Autistic people.

The Aspies who were speaking out amazed and inspired me.

The videos were my favorite, but I don’t always speak elegantly and write much better than I verbalize, so I knew this would not be my chosen medium.

I also had a strong desire to conduct my project in secret – so that nobody who knew me well would read what I had to say. My anxiety and OCD can get pretty bad and I knew I would worry too much if I had to face people after writing my blogs.

My biggest fear is fame and being found out. For me survival has always been blending into the background in anxious situations. Being recognized in public would make this impossible.

I’m a bit of a hermit and when I do go out, it is not to seek interactions with strangers. It’s not that I don’t like people either – I just get drained quickly by these types of things.

When I started the blog I never knew it would grow. I didn’t know people would email me. I had no idea I would EVER join Twitter because I really dislike social media.

Every time I log into Twitter I am battling my own anxiety again – afraid to say the wrong thing. People can be very touchy online.

Responding to all the tweets, emails, comments, and everyone’s questions takes up a large part of my day when I can log in. Blogging has become almost it’s own part-time job (without pay). Between working full time and keeping up with my readers there is hardly time to do much at the end of the day.

Still even on the days when I feel too tired and want to give up I feel obligated to log on. There are days when I am feeling completely overwhelmed by all of the emails, comments, and over one hundred Twitter notifications in front of me. So many tasks I want to cry. It is hard to even know where to start with all of them.

I read each and every one. Every email, every comment, every Tweet.  I used to respond to every one, but at this point I can no longer keep up.

Most days I love and look forward to the comments but that doesn’t make the large number of them any less intimidating. In honesty I know that on a dark or bad day, reading from my readers will give me greater joy than anything else. They are an amazing support network for me. I feel I owe them so much.

Some days it is completely overwhelming to me and I want to quit. I want my life back – but this is my life now.

When I want to stop I look at the readers, the people I am helping, and the people who still need my help. I can’t stop because there is still so much work to be done even when I am feeling completely overwhelmed.

Autism Level 1: “Requiring support” – What Support?

Doctors and medical professionals are trying to nail down and better categorize Autism. The latest grouping places the entire spectrum into three buckets, depending on the level of support required for the person to function normally in society.

I fall in to the Autism Level 1: “Requiring support” category.

Level 1: “Requiring support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Making Sense of the Three Levels of Autism – verywell

So they give me this label and throw me back out into the world, ironically without support. Now what? I am supposed to have this key that allows me to ask for things. My doctor tells me I have protected rights.

At first I am excited, finally I might be able to be more comfortable in my surroundings. I can ask for things and there is a reason besides me being difficult or high maintenance. Finally validated, yes those burning lights DO cause your migraines and avoiding them would be good for you.

What next? Asking for supports turned out to be more difficult than I thought it would be.

This category does not do my life experiences justice. On many levels I can surpass my NT peers but on a social level I often fail. When I put on my masks I can play these amazing characters who are social and confident – but being this person, who they want me to be, kills me. I can do her I can “be normal” but summoning the strength leaves me empty and ill.

Holding up this mask is a necessary evil from time to time, she gets me through my work days and the hard times. She is a character, someone I wish I could be – someone I am forced to be when backed into a corner.

Because of my mask I have peers in both groups, but the NT’s have never felt like peers. Watching, and observing them, trying to memorize their pasterns and mannerisms. Hoping to decode their intentions and feelings. Even reading their faces is difficult for me.

People don’t want to give me support because “I CAN be normal.” I am capable of acting like there is “nothing wrong with me”. (Quotes representing their words NOT mine.)

I can hide my pain, panic, and discomfort, manage to hold myself together just long enough to flee from the public eye. I always do – but I still have sensory issues and meltdowns like many of my ASD peers.

I need regularity and a predictable schedule, I need natural light and calm conditions or my overactive amygdala goes crazy and I get anxiety related illnesses. In my mind I am strong enough to do anything but my body and nerves won’t let me push myself as hard as I used to.

As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow. My Autism becomes more and more invisible, despite the disruptive symptoms, growing more intense.

I need help and supports more than ever but asking for them never goes well. Most people don’t believe I’m Autistic, and those who do say “but it’s  not that bad, you are normal.”

Employers don’t understand, they say things like “You only have to deal with florescent lighting three out of the five days a week you work – if you were here more maybe we could give you a window.” “You can’t wear earplugs today, we need you to answer the phones because nobody else is available.” For a job that was originally going to be FULLY REMOTE.

It always comes out like I am being unreasonable, picky, or difficult. At least that is how the opposition to my requests tend to spin things.

My accommodations are simple, let me type vs hand write, don’t give me spoken directions, let me sit in a quiet space (or wear earplugs) with natural light. Don’t ask me to stay late at the last minute if you can avoid it – if you know I may need to stay late tell me in advance. Most importantly please don’t make me go outside when it is cold. I have EXTREME cold sensitivity.

These are the accommodations that I’ve requested from my job – these are the supports that I would like to have because I feel like they are reasonable accommodations, and should be protected under the ADA.

The only support I get is a laptop – because it belongs to me and is essential to do my job (everyone at my work gets this so it’s not really a support). I can take notes on it, keep track of my schedule with it.

It is AMAZING that I get to work remote a couple of days a week. I am happy to have these things but the other items are important to me too and I haven’t been able to get any of them – not even the last one which always leads to meltdown.

Maybe I don’t complain enough. Nobody sees me on my worst days, when I am really struggling because I am PHYSICALLY ill from the stress of the environment and can not leave my house.

I “require supports” but it doesn’t mean I can get them. After all I’m (not always by choice) Anonymously Autistic.

Some days I feel like I am falling apart – if I stay in this world too long it may end me. Nobody can take care of me, I have to keep working.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

Questioning the Current Autism Spectrum Model – Guest Blog

This is not the first time I’m featuring ‘s work her on my blog. If you missed her last guest post My Meltdown (a Poem) please check it out. My dear friends has some amazing insight and describes in detail her feeling during a meltdown.

 

In this latest, thought provoking, feature  discusses the Autism Spectrum Model. Please check out the original post here. I strongly encourage you to subscribe and follow  for more great content and thought provoking works.

 

(The feature image is MY Aspie quiz result not ‘s)

Color wheel. Concept: Autism Spectrum

Can an autistic person be both high and low functioning?
Is this even the right question to ask?
I’ve heard the term “high-functioning” and “low-functioning” used for autism for nearly two decades, when I was first diagnosed.
I am not offended by the terms, but confused by them.
What is in question? IQ? EQ? verbal and social skills? How about coping with co-morbids and sensory processing disorder?
The autism spectrum is often seen as linear, with low on one end and high on the other.
This is one dimensional and I think, misleading.
I read Rebecca Burgess’ insightful article on The Mighty , illustrating the autism spectrum as a color wheel using a sweet and insightful character named Artie. I highly recommend clicking on the link and reading the link as it will better help you understand what I am about to say.
My IQ has been tested in adulthood twice. Each time, I scored 110, considered a B+ grade. Intellectually, I could say I’m high-functioning.
I can speak, though I sometimes have to stop and think about what I have to say or wind up repeating words while I try and think about what ones I want to use. I do well with writing/typing. It is premeditated. No one is waiting on my response. I can communicate on a deeper, philosophical and emotional level. I could say that I am high functioning verbally and moderately functioning with communication.
When it comes to sensory processing disorder, I don’t know. I don’t have many issues with sight, smell, or taste. I have a little trouble with spatial ability, especially in tight spaces or 90 degree angles. That means I bump into a lot of stuff.
Most of what I call “severe” comes from my auditory processing. I am hearing sounds louder than most.
In early grade school, the people that gave the hearing tests to kids remarked at how I could hear both high and low pitch sounds at very low volume. I screamed when the scratchy records were played. I have hated classical music all of my life due to the sudden changes in pitch and volume. I cannot be around small kids crying. I often played on the edges of the playground as a girl. I couldn’t handle the doorbell until I was in my tween years. Dogs barking, neighborhood fireworks, car horns all caused extreme startle (moro reflex) and automatic meltdowns.
My auditory processing worsened in my teens along with my body’s ability to regulate hot and cold. The only sound that became manageable was the doorbell.
Sensory speaking, the auditory part excludes me from so much of what life entails: socialization, employment, community service, that I would not be exaggerating to call myself severe.
I do not drive a car due to the fact my mind cannot process too much stimuli at one time.
I have always been a slow learner. Repetition was and is the only key to retaining information. Yet, I wouldn’t qualify as “intellectually disabled”, because I do eventually get the concept-unless it’s math! 😉
I think the answer isn’t the labels. It is a problem in how we perceive the one-dimensional model. It is outdated
.

I Worry About Autistic Children – Trouble in the School System

I was extremely fortunate in life, born into a large family who loved me greatly. Every one of them wanted to see me succeed. They pushed me and taught me things. My grandparents made sure I had good manners and my aunts and uncles taught me art and music. Cousins and family was fun but teachers and school was very difficult.

At home I felt confident and competent, this was always crushed when I went to school. My individuality was not cherished and teachers said I was too much of a distraction to stay in class. Eventually when I learned to sit still (which even now is hard on me) I was allowed to return to class with my peers.

They were strict and it was hard but in the end I had to want to go back to the regular class room so I would be motivated to sit still. Autistic people can do very well if they are motivated but our motivations my not make sense to others.

I’ve learned to use my own motivations as rewards for good work. I tell myself “if you do this now you can have a reward at the end”. Sometimes the reward may be a stretch or stim break, it could be a cup of coffee, or a snack. I need to be motivated and as an adult I have to motivate myself to create good habits.

It’s not much different than what I would do for my dog when helping him learn new habits. All creatures love rewards and I love my dog. I want to help grow good habits so my dog can have a happy life – we just both happen to love treats.

Teachers who punish, call out flaws, and ostracize children who are different were some of my biggest adversaries in school growing up. They didn’t know what to do with me back then. I was “smart and dumb at the same time”. Teachers also called me lazy. There were no accommodations for me growing up, I had to learn to blend in or get kicked out of school.

Fast forward thirty years and parents advocating for their own children often struggle to get reasonable accommodations for their children in the public school system. Schools want to offer many Autistic kids a minimal education and with our current political situation I worry things may get much worse.

Many great historical thinkers had trouble in school growing up. Imagine if they encountered a system that told them they were not worth teaching. What if nobody had taken the time to help them learn and grow?

Everybody deserves the chance to learn and grow. We need to make sure Autistic children do not get shut out of an education just because they have a different way of experiencing the world.

Casting Call for Employable Me – American Documentary

This week I found an email from Liz Alderman, casting director for the documentary series “Employable Me“, looking for candidates for an American based documentary. Obviously, due to my anonymous status, I will not be appearing on TV any time soon.

However, this issue is one that is near and dear to my heart. Too many Autistic people who want to work are unemployed/underemployed. I hope this show will bring light to why companies SHOULD hire Autistic people.

Please contact Liz if you are interested and SHARE if you know someone who might be.

Employable Me SHOW GRAPHICS

ENGLAND’S CRITICALLY ACCLAIMED DOCUMENTARY TELEVISION SERIES “EMPLOYABLE ME” IS COMING TO AMERICA!

CASTING DIRECTORS ARE SEEKING PEOPLE WITH NEURO-DIVERSE CONDITIONS OR DISABILITIES WHO HAVE STRUGGLED TO FIND LONG TERM EMPLOYMENT WHO WOULD LIKE ASSISTANCE IN THEIR SEARCH FOR WORK.

Optomen Productions is looking for people with neuro-diverse conditions and disabilities who would like our assistance finding employment, and who are willing to share their job search journey with the American television viewing audience by being a part of our critically acclaimed documentary television series, EMPLOYABLE ME.

EMPLOYABLE ME seeks to prove that having a neurological condition or disability should be viewed as an ASSET rather than an obstacle in the workplace.

High profile, aspirational companies and brands are beginning to discover the benefits of recruiting from the ranks of the disabled and those whose “brains are wired differently.”

What if your “disabilities” turned out to be a strength?  What if your condition actually gave you skills that were a virtue rather than a hindrance?  What if they turned out to be invaluable qualities that put you AHEAD of rival candidates?

We all deserve a role in society and the opportunity to pay our way. The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts and specialists so they can at long last find the job that best suits their unique skill sets and strengths.

That’s what this show is about: the struggle to belong and play your part. The disabled just need a chance for people to see what they can do, rather than concentrating on what they can’t.

 

Take a look at these inspiring highlights from our hit series to date:

http://www.bbc.co.uk/programmes/b0755nyq/clips

 

And view a full episode of our courageous series here:

https://vimeo.com/162540081

PASSWORD: job123

The bottom line is, a diverse workforce can be great for a business and this series wants to dramatically shake up the system to prove it.

Please pass this casting call along!  Television producers and casting directors like myself rely heavily on personal recommendations and word-of-mouth referrals to find interested and qualified people.  We appreciate your help!

Contact Liz.Alderman@OptomenUSA.com for more information on how to be considered for this opportunity. 

Optomen Productions produces hundreds of hours of television each year for many of the major cable and broadcast networks including Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo.  Our most successful series include Worst Cooks in America and Mysteries at the Museum.  Visit http://www.optomenproductions.com/ for more information about our company.

Oh the Ways We Love to Stim

People often ask about stimming. It is something that “normal people” have trouble understanding.

Most people stim. Have you ever clicked a pen while thinking, swished your tongue around in the roof of your mouth, strummed your fingers tapped your toes. Some stims are less noticeable and are considered “socially acceptable” and “normal”.

I stim more than “normal people” but less than some Autistics. Growing up undiagnosed forced me to learn to hide what was not socially acceptable. Thinks like rocking and making funny sounds, though soothing and helpful, will get you funny looks. These things I love are not typically welcome in the workplace.

Alone I am left to stim freely, I like to jump, rock, and bounce about, sometimes doing things that would make people question my sanity – but it feels good, oh so good. Releasing so much tension, taking a break, shake it off, reset.

In public I do thinks like rub my hands, fingertips and wrists. I play with my phone or a necklace or bracelet. I tap my toes under the table and stretch in my seat. Sitting still is hard work and eventually I have to release the pressure.

Fidget toys, scented oils, snacks, playing with my laptop mouse, or swirling the spoon in my tea so I can listen to the sounds of the cup. Even if people don’t notice I am stimming constantly, regulating, focusing, trying to keep from being overwhelmed.

Sometimes I stim when I am uncomfortable. Stimming helps me relax. Sometimes I stim when I need a break. Stimming helps me focus. Sometimes I stim if I am anxious. Stimming can help me think.

Stimming can take me to another place or help me deal with what is happening in front of me. When things get bad I can always stim.

 

#ActuallyAutistic – An Aspie obsessed with writing. This site is intend to inspire through sharing stories & experiences. The opinions of the writers are their own. I am just an Autistic woman – NOT a medical professional.

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