Tag Archives: neurodiversity

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.

 

Don’t Domesticate Me

I don’t want to be domesticated.

Chained to a home and a mortgage.

Having a job is a necessary evil,

although I am painfully aware

many WISH for the chance to work.

The endless cycle.

Work.

Work to pay for the house.

Work to pay for the things.

The house you cant enjoy

and the tings you don’t really need.

Spend all your time working.

Living just to work.

Careers don’t suit me.

I walk to my own beat.

Walking alone, quiet, with nature.

Walking for hours by the stream.

Someplace comfortable and calm

Maybe one day there will be time.

When I no longer have to work.

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

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.

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

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.

 

Autism is a Controversial Issue – People Fighting Online

I left Facebook a while ago because I kept getting sucked into the arguments between parents and Autistic people, Autistic people and the anti-VAX movement, and medical professionals and Autistic people. Today I logged back in and was quickly reminded why I left.

The first thing thing that upsets me is that all of these people think they know more about Autism than Autistic people, as if our first hand experiences are of little or no value. This is often parents but can also be medical professionals and organic health nuts (I eat organic but these people are extreme).

Cure culture fanatics telling us we are sick for wanting to stay Autistic – sick for wanting to stay the way we were born. Parents telling us we don’t understand because we are not like their child (some of us WERE at one point and have worked hard to improve as we grew up). Doctors telling us our claims don’t make sense to them , dismissing our complaints.

Next I am saddened for the children who’s parents are always telling everyone what a burden their child is. Many non verbal children can understand spoken language and may be able to read some day. Putting comments like this on the internet publicly doesn’t feel right to me. Telling everyone your child is broken doesn’t seem like loving acceptance either.

Brain damage and Autism do have similar traits but even if you have a brain damaged child – shouldn’t you love them? I am not a parent. All I know is how I would feel if my parents said those things about me.

If someone always talks about you with pity you will eventually begin to pity yourself. From a mental health standpoint this can cause a LOT of problems. Autistic people seem have more health problems and anxiety when they have low self-esteem.

There are a lot of unknowns with Autism. It seems there may be many contributing factors but my money is on genetics for most cases. Human brains are changing at a rapid rate, trying to keep up with the quickly changing world around us.

My brain is at ease with nature in the fresh air. The artificial world is unpleasant to me. Is this something primitive left over in my genetics, or am I a canary in the coal mine? Science may tell us some day.

Most upsetting are the people who want to cure and prevent Autism. I fear this could be a big problem for humanity if they succeed. All of the different brain types and thinkers make the world a better, more progressive, and interesting place.

I hate that this issue is tearing people apart. People get so heated and angry when someone disagrees with them on this topic, they say nasty things with little regard for the other person. It is nasty it is ugly and we really need to stop.

Stop telling Autistic people they are unwanted by society. That is what you are telling us when you say you want a cure for Autism or want to prevent Autistic people from being born. You are saying that being dead is better than being Autistic and I disagree.

I know you can’t reason with or speak to these people. They are close minded and the frustration, like Facebook, is a waste of my time – so I log back off and return to a happier place (my own blog).

The day this went live on Twitter someone took offense to my blog. Its crazy. You can not please everyone and my OCD would make sure I NEVER hit publish if I tried.

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.