Category Archives: neurodiversity

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.

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
.

I Worry About Autistic Children – Trouble in the School System

I was extremely fortunate in life, born into a large family who loved me greatly. Every one of them wanted to see me succeed. They pushed me and taught me things. My grandparents made sure I had good manners and my aunts and uncles taught me art and music. Cousins and family was fun but teachers and school was very difficult.

At home I felt confident and competent, this was always crushed when I went to school. My individuality was not cherished and teachers said I was too much of a distraction to stay in class. Eventually when I learned to sit still (which even now is hard on me) I was allowed to return to class with my peers.

They were strict and it was hard but in the end I had to want to go back to the regular class room so I would be motivated to sit still. Autistic people can do very well if they are motivated but our motivations my not make sense to others.

I’ve learned to use my own motivations as rewards for good work. I tell myself “if you do this now you can have a reward at the end”. Sometimes the reward may be a stretch or stim break, it could be a cup of coffee, or a snack. I need to be motivated and as an adult I have to motivate myself to create good habits.

It’s not much different than what I would do for my dog when helping him learn new habits. All creatures love rewards and I love my dog. I want to help grow good habits so my dog can have a happy life – we just both happen to love treats.

Teachers who punish, call out flaws, and ostracize children who are different were some of my biggest adversaries in school growing up. They didn’t know what to do with me back then. I was “smart and dumb at the same time”. Teachers also called me lazy. There were no accommodations for me growing up, I had to learn to blend in or get kicked out of school.

Fast forward thirty years and parents advocating for their own children often struggle to get reasonable accommodations for their children in the public school system. Schools want to offer many Autistic kids a minimal education and with our current political situation I worry things may get much worse.

Many great historical thinkers had trouble in school growing up. Imagine if they encountered a system that told them they were not worth teaching. What if nobody had taken the time to help them learn and grow?

Everybody deserves the chance to learn and grow. We need to make sure Autistic children do not get shut out of an education just because they have a different way of experiencing the world.

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.

 

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

 

 

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.

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

Autism’s Not So Bad – Why I Focus on The Positive

On this blog I share my difficulties so that others who have similar troubles will know they are not alone.

In life I try to focus more on the positives. It is better for me to focus on the things I can do versus worry over the areas I’m lacking.

I could beat myself up over my flaws until my self-esteem is in the toilet and I slip into a deep darkness. Trust me I’ve been there before and getting down like that is not helpful. Sure, I have limitations and disabilities but we all have troubles and obstacles to overcome.

When I was younger adults pointed out my flaws. Teachers and school highlighted all the ways I was a failure. I felt completely inadequate and was physically ill from anxiety.

My skills and artistic abilities were always discouraged. Nobody pushed me to peruse my talents. People assumed I would grow up and never make anything of myself.

It has taken years to recover from this trauma. The past few years have been the best years of my life – especially since discovering my Autism. The amount of self compassion needed to accept this truth helped me shift my thinking.

My Autism has given me quite a few gifts that I would like to highlight. These are the things I think about during my day. Reflecting on the positives keeps me going, making sure I don’t fall into a pit of self-pity. I have to keep moving.

I am extremely detail oriented (almost to a fault sometimes) but when doing the right types of tasks I am better than most at catching certain things.

My personality – these traits I believe come from my Autism. I am very loyal, honest, and self motivated. Above all things I value the truth.

I am a very dedicated employee and am great at following a list of tasks. I don’t socialize when I should be working and generally try to do work I love. I work hard and follow the rules.

Peer pressure does not get me. I am able to see when others are being illogical. I am a VERY logical person. I can also be calm when others panic (depending on the situation).

I have a bond with animals and nature. A walk in nature cures anything in my soul.

I’m not afraid to go against popular opinions – and will often comment when I disagree with them.

My perspective is different. Autism affects the way I intemperate the world so I have a unique perspective. This can be very helpful in a group when looking for new solutions.

I see music videos when I close my eyes and recall songs in my head like a jukebox. The movies come alive in full color. This is just magical. I also memorize songs and know all the words to just about every song I enjoy.

I can write in a way that comes from my Autistic experience. I’ve read so many books. As a child I read fiction, Stephen King, Dracula, and many more adult books. I remember the beautiful patterns in the words. I’ve read all the classics and now I read non-fiction. These things have rubbed off on me.

Patterns are everywhere and I see them. I see pasterns in everything – people, objects, concepts. Sometimes I get lost in them but I’ve learned to use these things as a guide for my life. It makes things more predictable – which most Aspies can appreciate.

Synesthesia – I enjoy mine but am not ready to put the experience into words. Sometimes it is distracting and even distressing. It made driving very difficult. Until about a year ago I didn’t even know there was a word for my experience. Still – I actually love this part of myself and would NEVER give it up.

So despite the days where I am sharing a painful experience, these are the things in my mind on a day to day basis. I remind myself every day of the ways I am blessed so that I am not overcome by darkness.

Misunderstandings

So many misunderstandings.

People read too much into meaningless things.

If I don’t look at you when you speak

you assume I’m not listening.

When my body language

doesn’t do what you’d expect

or when I laugh in the wrong moment.

If I say something using the wrong tone

you may think I’m rude.

If I cannot speak

I must be hiding something.

Over and over,

we confuse each other.

When I take something you say literally,

or my brain skips hearing words as you say them.

Sometimes I need time to process.

If I don’t get it

we’ll both stay confused.

Sometimes I can’t explain myself.

Please trust me.

Sometimes I process things on a delay.

Maybe we can talk about it another day – maybe not.

I’m not ignoring you or trying to

leave you hanging.

If I look confused, I probably am.

Give me time to figure things out on my own.

Don’t treat me like a child.

It’s only

a misunderstanding.

A poem about Autism and misunderstandings. Being Autistic sometimes feels like nobody understands you. Other times you know instantly that some misunderstanding has occurred.