Category Archives: Executive Functioning

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.

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.

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.

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

What IS Autism – From An Autistic’s Perspective

A reader asked if I had a blog post that described what Autism is. I started to say that this entire blog gives great first hand information from Autistic people.

Our experience can not really be summed up in a one page post. There are a lot of things that make us different.

First I want to say that each and every Autistic person experiences the world in a very different way so what I state below may not be true for everyone. I am going to go over some generalizations that are true for me, also taking in mind what has been shared with my by my amazing readers.

We tend to struggle with spoken communication but many of us do VERY well behind a keyboard.  We can have tricky short-term / working memories but a LOT of us have long-term memories that are FOREVER. We need time to process and go over things but once we understand something it stays in our minds (or that is how it is for me). Time to organize and prepare thoughts is essential for me because of this.

Many of us have sensory sensitivities. Bright lighting can cause chronic migraines and other illnesses. I can hear everything which is unpleasant because I can’t tune individual things out. My hearing is essentially so sensitive that I can’t hear conversations in busy rooms. Not to mention the distraction of every small noise seeming VERY loud. Clothing can be itchy and irritating. Tags and socks are the worst and certain grooming activities can be extremely uncomfortable. Getting a mani-pedi is NOT relaxing for me. Even getting a massage is difficult because of another person touching me can make me want to jump up and run.

I have a hard time sitting still. Our bodies (and minds) crave constant motion. I am always playing with something rocking in my chair, humming or singing. This is called stimming. It is a regulatory behavior and helps with sensory input, relaxation, and focus. I also speak to myself out loud a lot. These things “normal people” don’t tend to accept but we REALLY need them to.

Many Autistic people have comorbid conditions – other illnesses with their Autism. Some examples are insomnia, epilepsy, IBS, OCD, anxiety, depression, migraines, apraxia, ataxia, sensory processing disorder, the list goes on. These, in my mind, are not Autism but rather Autism related conditions. They differ from person to person.

Autistic people can be extremely intelligent but learning disabilities and intellectual disabilities can also happen with Autism. Just like “normal people” our IQ’s are all over the place. People often assume Autistic people all have intellectual disabilities. I prefer to think of it as a difference. Also EVEN non-verbal (non-speaking) Autistic people can fall into the “high IQ” category. Never assume an Autistic person cant’ understand you.

I can speak but am not as good at it as most “normal people” but there are a lot of Autistic people who have apraxia of speech. This means they may have all the words and thoughts inside BUT the mouth pieces don’t move. For some reason the brain can’t tell the mouth and related parts how to work. Some children speak late and others never speak. I had no speech delay.

Dyslexia and Hyperlexia are also common in Autism. I am Hyperlexic.

Our brains tend to be spiky. We can be far above average in some pretty random areas, art, math, music, memorizing, writing, or not. At the same time our deficits in the areas that don’t develop as fully can be perplexing to the word’s general population.

For example – my conversational skills are so limited that I can NOT tell when my turn to talk is. My solution? Don’t talk. Before I stopped talking people kept calling me rude but I was doing my best. I never wanted to be rude. I’ve become more quiet and contemplative – more of an observer than I used to be. Actually this has been an improvement.

Autism is invisible. Unless I am stimming wildly in a chair or flapping my arms wildly you would not see my Autism – and these are things I do in private. Any time I try to share with someone that I am Autistic, a 34 year old woman who appears to have it together, I am dismissed.

I try to share mostly when I am looking for some understanding about an accommodation that I am about to ask for. I ask for little things – natural light, a quiet spot, to be able to take notes on a laptop.

Often people tell me I don’t “need” these things and that I am making excuses for myself. I just want to do my best. This is the hard part, when you ask for help and people say “nobody else will have that” or “it’s not fair to play favorites” even better “you already have it pretty good”.

Summing it up in a blog comment or post is impossible. Please dear readers, I ask that you provide your own experience in the comments so that the world may someday redefine wheat Autism is from OUR perspective.

 

With love,

Anonymously Autistic

“Anna”

 

#ActuallyAutistic #InvisibleAutism #AutismAwareness #SheCantBeAutistc #AnonymouslyAutistic

 

 

Autistic Confessions – Intrusive Thoughts

Intrusive thoughts – I’ve had them since I was a child, although the older I get (due to continuing great effort on my part) the more manageable these things have become.

When I was a child, I remember being disturbed by some of the things that would randomly pop into my head. Very quickly my inner monologue would begin to obsess over what ever horror I had just seen or thought.

“Why I am I thinking about that? Is this going to happen? Do I want this to happen? What’s wrong with me? This is not normal.” 

As a child I was convinced I would grow up locked away. One day my mind would crack and all the crazy would fall out, people would know, and they would put me away. It sounds ridiculous but this fear was very real to me for many years. It never fully vanished until my Autism diagnosis.

I’ve learned to manage things. I’ve learned to recognize the patterns in my mind (most of the time). When I see myself slipping into that same old spiral it’s time to move my mind to something else – a distraction.

Turn on the radio and sing out loud. Blast your stereo and dance until the nagging fades away. Write a poem, make a sketch, go for a run, or a walk. Get out of your head – turn it off, make it stop. If you go there the trap will have you deep in the dark.

I’m at War With Myself – Parts of My Autism People Can’t See

Sometimes I feel as if I am constantly in a battle with myself. Fighting against irrational thoughts in my mind, and unpleasant sensations in my body.

Constant nagging in my mind – “You might have left the door unlocked.” When I know very well the door should be locked. “You forgot to water the dog.” Despite leaving them with a full bowl.

Social anxiety tells me I’m not good enough and I have to remind myself that I only feel that way when hanging around the wrong people or large groups.

It’s like my adrenal gland is extra jumpy. I feel the surge of chemicals flowing through my body, making my heart and mind race. It used to cause panic attacks, but now it happens so often that I’ve learned to recognize the feeling and breathe through it. The sensation is unpleasant and can also lead to sensory overload or meltdown if I don’t relax – so I ALWAYS relax.

My brain tells me the lights are too bright, so I squint all day until I have a headache and my head is throbbing. I can’t tune out the buzzing light bulbs and humming electronic noises coming from the walls – so I often wear headphones with soothing music.

I get dizzy when I stretch my arms high over my head – probably not related to Autism but really annoying because I am short. Just throwing it out there because my readers always surprise me with what we have in common.

The air outside is almost always either too hot or too cold because I cannot regulate body temperature well. I am only comfortable between about 75-90 degrees anything over or under that is really pushing it.

People’s voices stick better in my head then their faces. I often have a VERY hard time recognizing people especially out of context. It’s called face blindness and it can be a pain, especially in a corporate environment.

When I do socialize I prefer to stick to people I know, because I can’t read the faces of strangers unless someone laughing, crying, or making some other extremely obvious face. I study people I know so I can learn their faces better but still this takes a LOT of work on my part.

Sometimes I come off as rude. My body language and tone don’t always come out the way I want them to. Misunderstandings are a way of life for me. I’m used to this now and often don’t even bother trying to correct people because they don’t understand tone not matching feelings, etc.

I take things literally – but normally can figure things out if there are context clues.

Following spoken directions is difficult – but if you give me time to write down what you are saying so I can read it later (over and over) I can get things done. It’s not that I don’t understand, it’s that I understand in a different way.

My sort term memory is about half as good as most people. They say people can hold about 7 numbers in their working / short term memory – a phone number.  I’ve never been able to hold more than 3 numbers in my head at one time. If you say something to me when I am trying to hold those 3 numbers in my head the numbers will probably vanish.

Side note my long term memory is forever.

All of these invisible things. I am constantly battling myself, trying to fit into a world where people can’t imagine what you’re going thorough. When you try to tell them they look at you like you are crazy or dishonest – and honesty is important to me.

It hurts when you ask for help and nobody is willing to stick out their hand, so I keep these things to myself.

#ActuallyAutistic #AnonymouslyAutistic #SheCantBeAutistic #InvisibleAutism