Category Archives: invisible disability

Autistic Confessions – In Hiding

I’ve been in hiding. Desperately trying to conserve the energy that I have left at the end of the work day. Being in an offices is extremely hard, despite having kind coworkers. At the end of the day my head is pounding and my energy is drained, leaving little left for more pleasant things.

Hidden away from the world, I turn down almost every invitation. Navigating the social aspects of my workplace leaves my social mussels overworked. I’ve push almost everyone away because I literally can not handle anyone or anything extra at the moment.

I’ve stopped checking my personal email. There are so many emails and so much information being shared at work. I get to the point where I just need all input to stop. My brain has become bogged down and slow, as I try to process my days when I get home.

My brain is like a sponge, it sucks up everything until it is drowning and oozing. Covered and dripping with too much information this most important organ can no longer function, so I shut it off, preventing meltdowns.

This is burnout, this is me in self preservation mode. I am holding on but some days I am barely here. I try very hard to always stay positive because I know sinking into a depressing would be the worst thing for me at this point.

In the meantime it’s many solitary walks in the woods, counting my breaths, less commitments, and as much creative down time as possible.

That is why I have gone into hiding, reclusive, in quiet stillness. I’ve got to take care of myself, there is nobody to do it for me.

 

Autistic Confessions – Email Anxiety

To my beloved readers, I feel I must confess something that a few of you may have noticed – I have email anxiety and I haven’t checked my email in weeks.

With work emails it is almost easier because I have to answer them or there will be a consequence but sometimes I open my personal in-box, see more than 2 or 3 emails and immediately close the browser because “I just can’t.”

It seems like a huge task, one that requires focus.

Sometimes I get so overwhelmed just trying to figure out where to start that I cant. Then I have guilt. Guilt for not responding to my readers and friends in a timely fashion. In addition to the guilt there is the nagging that something in one of those emails might be important.

After a few hours, or a day or two, the shock wears off and I log back in to read an email or two (no guarantee if I will respond unless something is urgent). Most of the time I will shoot back a quick response if I open a short email but sometimes a long email will send me back to the little gray “X” on the top right of my screen.

At that time the entire cycle starts over. Some days I may only respond to one email – or none at all. It’s like I’m waiting for the perfect circumstances to arise so I can read and respond to email – but very rarely does my mind cooperate.

The worst part is I realize it would be better if I just forced myself to get them out of the way – so I can stop obsessing over my unread emails. Maybe I should go check my email.

 

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #OCD

 

Meltdowns – Banging My Head Against the Wall

It’s hard to write about meltdowns, they are very difficult to describe. The most frustrating part of having one is the fact that I have very little control over it. In fact while I am having a meltdown it feels as if I have lost control of everything.

I become very much like a child having a tantrum, but the reality is at that point I can no longer think clearly so my cognitive abilities may not be far above that of a child as the episode comes on. I am completely overwhelmed by everything.

Many of my meltdowns are tied to anxiety.

I don’t often bang my head against walls but if I do, it is because I am in a very dark place, sick, or in pain. This is a last resort scenario, when something is too much and I just “need it to stop”.

Not encouraging this behavior just trying to shed some light on something that doesn’t get enough discussion.

Every time I have a meltdown I write a poem. Here is one I wrote a while ago.

Banging My Head Against the Wall

The worst of meltdowns.

Trapped with my own anxiety and sense of dread

swirling endlessly inside my head.

I can’t escape.

Please make it stop.

Curled up rocking my back to the wall

tears and eyeliner pouring down my face.

Stop! Stop! The panic continues

while I bang my head up

against the wall.

It’s gotten to that point

where everything falls apart.

You think I am overreacting to something small

but this is the result of holding things in

 hours, weeks, even months.

It’s always the same.

I reach my limit.

Eventually that one thing happens

and everything just becomes too much for me.

The weight I’ve been carrying comes crashing down hard.

Desperate, panicked, and alone, I am stuck beneath it.

“Get a hold of yourself! You are acting like a child!”

The words don’t help because I can’t

make it stop.

I would if I could

but this has to run it’s course.

Once the meltdown starts it overtakes me.

All I can do is run, make irrational choices, and cry.

When a meltdown hits I am lost and tormented.

You may be here with me but I am alone

and feeling helpless

drowning.

School Was the Hardest thing About Growing Up Autistic

Someone asked about how I was in school.

I was in special education when I was young (early elementary school) and had tutor a few years later. I was a b-c (sometimes d student) with poor social skills. However, I still feel I was “smart” just not smart AT school.

Things that bore me go in one ear and out the other while things that catch my attention and interest me I can learn every detail about. That’s just how I learn.

School wanted me to learn boring things that seemed completely irrelevant and I had a lot of trouble with that.  My other problem at school is that we were expected to sit still for long periods of time without fidgeting. At home I had fidget toys all around me (pinwheels, kaleidoscopes, silly putty, and more). At school no toys were allowed

Teachers saw me as a problem, something they did not want to deal with. They wanted to send me away or pass me along. I even had one teacher tell me I “should have failed her class but she passed me just so she would not have to see me again next year.”

I started school young, excited, and ready to learn. I’ve always had a passion for learning but school almost beat that out of me. By the time I left school I didn’t even know who I was anymore.

School didn’t want me and college was never a real option for me.  I was dismissed over and over again by people who should have motivated me.

Every day I am grateful that I am self motivated. When I want something I push myself for it. I know not everyone has this skill – I wish I could share it with anyone who needs it.

Growing up in my own little bubble, the world in my head is magical and bold. My whole life it has felt as if people are constantly trying to pull me out of that bubble – but the bubble is where I want to be. I am the bubble and the bubble is me.

School wanted me to be a cube but all my edges were rounded. Why could I not just be myself?

 

#ActuallyAutistic #SheCantBeAutistic #AutismAwarenes #AutismAcceptance

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

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.

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
.

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.