Autistic Confessions – I Hate Phone Calls

Phone calls have always given me anxiety but did not know why until I really looked at myself. For many years all I knew was being on the phone, unless with someone I am close with, caused me great stress. I hated talking on the phone, something most girls love, but why?

Since my Autism diagnosis many little truths about myself keep popping up. Little things that were always funny are starting to make complete sense. I see myself and my actions through a new light and spend a lot of time really digging into my motivations and the reasons behind my anxiety.

I get anxious on the phone because I have a verbal communication impairment. I have hyperlexia which means that my comprehension for reading, writing and typing far exceeds my verbal comprehension. People who are used to corresponding with me via email would never guess this. On the phone (and in face to face conversations) I am often confused.

I also have Sensory Processing Disorder. People are hard to hear over the phone and when you add ears that don’t filter out any background noise things can be impossible.

Phone calls confuse me because I miss  a lot of details because my brain can’t keep up. Because I am Autistic my face to face communication is impaired.

Also people tend to talk faster on the phone and don’t like when you pause to think about your words – because they think you hung up. However, I need time to think before I speak. The entire thing is very stressful.

That is why I hate phone calls.

 

#ActuallyAutistic #SheCantBeAutistic

Autism Acceptance Day Wish List

This year for Autism Acceptance Day I have five wishes. Some day they may come true – then my work blogging will be complete.

  1. I wish everyone would be aware of Autism, what it really is, and what it really isn’t. Too many misconceptions about Autism are out there, what causes Autism, what Autistic people need. Someday I hope the rest of the world can accept the truth.
  2. I wish Autistic people could be accepted for who they are. In my dreams People would not ask us to change or be more “normal”. Sitting a chair, rocking back and forth while humming would not be thought of as strange. Eye contact would not be forced and passing would be a thing of the past.
  3. I wish Autistic women and adults would stop being overlooked. The media, Autism organizations, and Autism service providers are often focused only on children. People seem to forget about Autistic adults, as if we grow out of our brain types as we age. For me, the older I get the more Autistic I feel – but since I “function so well” cant really be that Autistic or need services (sarcasm).
  4. I wish Neurotypical people would understand what passing is. Maybe if they understood the work that goes into pretending to be “normal” they would not ask this of us. Maybe if people understood passing they would not doubt me when I tell them I am Autistic. I hate being called / thought of as a lair.
  5. I wish we could stop pathologizing Autism. Maybe if people understood, accommodated, and accepted us we could start thinking of Autism as a difference not a deficit. Yes, I know we have our difficulties and commodities. Trust me I have my own, however a LOT of my disability comes from the fact that people around me are unaccommodating of my requests. They call me dramatic and high maintenance, when the lights above me are making my brain throb and I ask to sit somewhere with better lighting (or ask for other accommodations).

 

#ActuallyAutistic #SheCantBeAutistic

Autistic Confessions – Am I REALLY Autistic?

A conversation among my readers brings up an interesting common feeling among Aspies. Many of us remember reading the definition of Autism or Asperger’s before we were diagnosed. A lot of us read those words and thought – “Oh, no this is definitely not me!”

Still something doesn’t let the thoughts settle so we do a bit more digging. For me it was finding other Autistic writers in books and online. Before hearing their voices I had always felt like some creature other than human. I assumed I was a broken human, defective, odd, strange.

It started with YouTube videos, then I found blogs, and invisible disability websites. Finally after a lifetime in the dark I found my tribe. Hearing and reading voices that echoed my own gave me confidence. Before I felt broken but with the Aspies I was just another one of the group – a real life “Ugly Duckling” story.

We had things in common, many things. Things I never share with people, experiences that most people cannot relate to or understand, the way my mind works – my deepest darkest secrets. The Aspies and I had a lot in common, all the things I’ve never tried to share with other people because I knew the looks people would give me for being honest.

All this and still I wondered if I really was Autistic so I decided to seek a diagnosis. Even after getting a diagnosis I STILL wondered if I really was Autistic. The label, handed over by a doctor, seemed to imply that there was something “wrong with me” and I never felt that way – at least not in relation to the way my brain works.

One of my readers mentioned “feeling like she was not disabled” enough to be Autistic despite being officially diagnosed.

Too many medical types and non-Autistics speaking about Autism. It’s about time we start speaking for ourselves.

This is why we need more Autistic writers to speak out about what they are experiencing, so the other Aspies can wake up, stop feeling alone, and broken. There are too many lonely Autistic people in the world. I wish them truth and ease. Hopefully some day they will find their home.

It took me a long time, even after my diagnosis to fully accept the truth – especially when almost everyone I tell about my Autism won’t believe me. There are still days when I wonder.

Maybe it’s my OCD? I know it makes me second guess and doubt myself even when I KNOW I’m right.

This strange feeling that I only get on my best, healthiest, clearest mind day – am I REALLY Autistic? (Then a bad sensory day where I cannot leave the house or cry in public reminds me – still an Aspie!)

Check out the comments that inspired this blog post HERE on AnonymouslyAutistic.net.

#ActuallyAutistic #SheCantBeAutistic #AutismAwareness #AutismAcceptance #AnonymouslyAutistic

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
.

#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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