Tag Archives: autism awareness

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

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

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.

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

 

 

Remrov Speaks at the Autism Speaks Walk Montreal 2016

First off – I cannot take credit for the following video. All content belongs to the original artist linked below. This post has been shared in order to spread a message / educate / inspire.

Let’s set aside the controversy surrounding Autism Speaks in order to support someone who is out there spreading the message that Autism is only a “disability” when we are expected to act Neurotypical.

Please do check out Remrov’s channel (Remrov’s World of Autism) on YouTube.com.

Autism Awareness By Aspies for Aspies

I find a lot of great things while digging around the internet. I can not take credit for this video. Please visit and subscribe to the original poster, The Aspie World, on YouTube.com.

 

 

World Autism Awareness Week 2016 is here and I am doing a video on help for Autism and Aspergers Syndrome Awareness. Hey guys thank you for watching my video *more stuff below, :)*. Watch more of these videos (ASD Help): http://tinyurl.com/AW-ASD-H

Autism Awareness… for Autistics

The following guest blog is original content created by:

Allison M. Kramer
Adult Autism Spectrum blogger and nature/landscape photographer
Web: www.autisticaplanet.wordpress.com

http---www.pixteller.com-pdata-t-l-317787

I know that having autism leads to narrow-mindedness as well as black and white thinking (a naturally occurring part of having autism, not selective selfishness). I am reminding people with this meme that autism is a broad spectrum.

I look at my own position on the spectrum as if there were a buffet (in which I wasn’t invited to or consulted about). Whoever it was in the cosmos that attended that buffet of autism traits chose a normal I.Q., hypersensitivity to certain sounds (that are quite pervasive in American culture), migraines, gross motor skill impairment, PMDD, SAD and acute anxiety. Fortunately, for me, sleep disorder was left out of the mix along with gastrointestinal issues.

I am grateful for the things that did get left out and empathize with those who do struggle with the issues I do not. I don’t undermine or exclude. I believe that years of therapy and simply being alive have helped shape my broader, “grayer” way of thinking.

That said, it is my hope that others across the autism spectrum will try to have a broader view of their fellow spectrumites. I hope this blog post will help.

Please also know that having a single issue (auditory) with in an issue (sensory) can and does lead to a significant lack of independence and increased need for lifelong support.I am an example. I read blog posts about autistic people who have mild to moderate degrees of impairment with broader issues (communication, socialization and sensory), but do lead independent lifestyles. It is not all or nothing.

I strongly think that acknowledgement and acceptance (which most autistic people I have read about want) of autistics by autistics counteracts the loneliness and isolation that are pervasive themes of autism and I think the general population of humankind.

I couldn’t have said this better myself.

This is it. Why we need to speak up and start speaking for ourselves. Because people who do not live in our shoes can not possible understand what it means to be an Aspie. Even people who mean well and come from a true place of love can’t understand.

Nobody is to blame. It is our duty to self advocate.

To friends of ours who are yet to understand why we are so fiercely advocating for Autistic Rights… [from my personal page] “I saw this on Twitter last night and shared it on my page (The Bullshit Fairy on Facebook). I woke this morning to see 4 hours later, it had 150 likes/sadness […]

via Awareness Hurts Us — The Bullshit Fairy