Category Archives: Passing

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

Letter to My Younger Self

Dear Me, so bright eyed and bushy tailed.

Wild child, who can’t sit still, full of joy bouncing off the walls. Yes you are strange, but please don’t fear your uniqueness. Be you, don’t grow bitter.Stay strange and amazing.

You have so much potential. Yes, your mother is right you are smart. Stop believing when people tell you otherwise.

It’s okay that you don’t need people. That makes you independent NOT defective. You are not cold and robotic you are calm and logical. Yes you do things differently but some day this will be your strength.

The people who picked on you never made it far in life. It was them not you who had the problem. Bullies are insecure and often suffer on the inside, lashing out to make themselves feel bigger. Don’t be like them. Stay kind.

Silly girl, who talks to the animals and trees. Never stop. Don’t worry about what other people think of you. You are perfect just the way you are.

 

With deepest love,

-Me

Passing – Blending in For Survival – The Masks We Wear

I grew up undiagnosed so I learned to sit still and when to be quiet. I keep all speech and movements carefully planned like I am in a play. It’s an act I put on – hiding my Autism as a survival mechanism that I developed due to not knowing why I was different. It wasn’t that I was ashamed – although as I grew older bullies forced be to hide for my own safety.

At home with my parents and family all of my differences seemed normal and I was so “smart” that nothing could possible be said about anything else.

I’ve said before that Autism runs in families, even if some families never notice it. My family is pretty quirky, despite my Autism being obvious, at home blending in was easy.

When I was very little I had a very had time regulating and maintaining and indoor voice, my balance was not great, and as a toddler I preferred spinning objects over people.

In old videos of me adults are unable to get me to look away from my things when they call my name. I can hear – because in one clip a phone rings and the bell startles me to look about but I tune out all the humans begging for my attention.

As I grew older I had to go to school and my differences became more obvious to those outside of the home. In preschool I often asked for teachers to hug me – because I was anxious and craved the release of the squeezing pressure. Teachers thought it was strange that I ask people who were not family for hugs.

Everyone was nice to me up until about the first grade. It was then that I met my first bully – a strict old fashioned southern school teacher. I remember that she wanted me to sit still and tried to make me speak in front of the class. She didn’t give hugs and she wanted me, the disruption, out of her classroom.

I remember sitting on the floor in the hallway as my mother spoke to the adults inside the office. The conversation is not in my mind but I remember my mother being very angry when we left. Afterwords I remember her telling people “that child is not stupid”.

It was agreed that I would spend part of my day in a special education classroom.

Being labeled a special-ed kid brought about a whole new type of bully – other children. People who had always ignored me in the past now made efforts to scream names at me in the hallways. The children were mean and the adults had an attitude as if being picked on was just a part of life.

In my mind all of my troubles were linked to being in the special education class-room so I worked hard to get out of there. Unfortunately by the time I escaped the SPED room the damage was done. Names like “Retard” and “Short Buss” followed me until I moved to a new city years later.

All because I was shy and had a hard time sitting still. One teacher who didn’t want to deal with me caused so much trouble and pain.

I thought things would be better in my new school. Finally I was invisible again. Unfortunately I still ended up having several altercations with bullies over misunderstandings. Despite proving my intellect, my social skills were still very limited and they often got me into trouble.

We moved one more time before high school, this time after being in a play. I remember thinking – acting is so easy it’s what I do every day when I am around other people. I made a conscious effort to pick and create a character of myself for my new school – one who does not get bullied.

I studied and watched movies and real people. I taught myself to “wear a mask” in school and eventually at work. The character. She comes out whenever I need her but takes up a lot of my mental energy.

Passing is a survival mechanism. As an adult you are asked to do more and more things that require a “social mask”. If you don’t learn do adapt one life on your own can be difficult – unless you find people who are understanding of your differences.

Wearing the mask too often can lead to Autistic Burnout.

Unfortunately we live in a society that can be unkind to what it doesn’t understand. Social skills are valued and necessary but many Aspies, myself included, have a hard time with even the basics (such as timing in conversation).

We have misunderstandings and miscommunications. People think we are rude because they do not understand that these things are not natural to us. Even worse they are often upset when we get things wrong.

It is difficult for us to hold a job or make advancements in the workplace because we do not value social acceptance or do well with office politics. I personally understand them in a very mechanical way but try to keep my head down and let my work speak for itself.

As an adult blending in means happy hours and group outings to the new trendy spot in town – things that I can’t even pretend to enjoy. I am learning that blending in is no longer enjoyable, turning down all invitations to hang out with co-workers and sometimes friends.

Work socials are the worst for me. Any group larger than three people is not enjoyable, although I can push it to a group of four without losing my mind. Too many conversations at one time or in a loud space can lead to sensory overload and will send me home feeling like a zombie desperate for a hot bath and feeling empty.

The pressure to be “professional” is intense even in a relaxed setting. How do you do professional and relaxed at the same time? I don’t have that character in my Rolodex. This does not compute.

I’ve dreamed of a day when I will drop all of the masks completely however I realize most people, especially those in sales, have some sort of character they play. I don’t want to play a role, I want to be myself.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

All the world’s a stage
And all the men and women merely players
They have their exits and their entrances
And one man in his time plays many parts

- William Shakespeare, 1564 - 1616

I Want to Encourage Everyone to Write

Writing is therapy and can be a key to better self understanding. We all have stories to tell and lessons learned. When we share we give others the opportunity to learn.

Write – even if you never share your world with anyone.

Pour your soul out onto the pages (digital or hand written). Let your thoughts come to life. Often I am surprised at what comes out when I am behind a keyboard. There is a flow when I am comfortable and relaxed.

In face to face interactions I am not nearly as eloquent. Sometimes I am just struggling to keep pace with a conversation – my brain tends to save information to process later. This is inefficient when speaking to people. By the time I am ready to contribute often the topic has already been changed.

My social differences are often misunderstood by my peers. I don’t need to look at people when they are talking to me – and listen best if I don’t try to. People often think I am rude, daydreaming, or not paying attention. They don’t understand that my brain works differently.

I started this blog out of frustration. When everywhere I go everyone misunderstands or underestimates me. If I tell people I am Autistic they say things like “you seem to have grown out of it” or “you don’t seem autistic”.

The picture they have of Autism is one that was sold in movies and on the internet.

It is a boy who cannot speak, an adult who may never live on their own, or someone who bangs their head against walls (I do this but not hard enough to hurt much).

An attractive woman who appears to have it all together is NOT what they imagine when you say “Autism” and they can’t easily adjust the pictures in their minds.

Neurotypicals tend to have more of a “hive mind” than Aspies do. They tend to follow popular opinions and are often hesitant to stray from what is considered “common knowledge”.

I can only see one fix for this problem – change what is “common knowledge”.

Aspies are wired to be individuals we don’t care about what others think – unless we are taught to care what others think (then we can become overly eager to please). We tend to be very analytical – sometime to the point of over analyzing.

Many of us thrive in solitude and are often accused of being “antisocial” and other negative terms.

People have a hard time accepting what they don’t understand. That is why it is so important that we all share our stories. Everyone has a story to tell.

Do something with yours – even if it is all you’ve got. Maybe you will change the world.

 

#SheCantBeAutistic #ActuallyAutistic #AnonymouslyAutistic #InvisibleAutism

Autistic Burnout – Are You Going Through Burnout?

The most popular search term used to find my website is “Autistic Burnout” which leads me to believe that it is a topic that many readers have interest in. As always I am more than happy to elaborate and share what I’ve experienced on this topic however I am still waiting for a medical explanation for the onset of these disturbing symptoms.

Burnouts (sometimes called Autistic Regression in children) can last for weeks or months and can be reoccurring and can be tied to life and health events. Sometimes Autistic Burnout can look like and may be mistaken for or come with depression.

I’ve gone through burnout three times in my life.

My worst burnout was around puberty and my most recent burnout came when I moved and started a new job. In both of my most recent burnouts a major schedule change was involved and I had to adjust to a new normal.

Burnouts seem to be tied to stress and self worth. As an Aspie, having any large life changing event is almost guaranteed to cause me problems.

When I go through burnout it is easier for me to have meltdowns and they become more frequent.

My head aches almost constantly and my brain becomes fuzzy. Easy tasks may become more difficult. Trying to think can feel like swimming through thick glue.

My mind and body become worn down and tired easily and my sensory processing disorder gets a bit out of control. My senses become unpleasant and I don’t want to be in public.

Full blown sensory meltdowns don’t normally bother me unless I am going through burnouts or am not getting enough rest.

Burnouts make me feel like I am always tired, running on fumes and could meltdown at any moment. They make me feel sick and weak and even mess with my digestion.

There is only one cure that has ever helped me to recover from burnout – working passionately on a creative project that I am good at and being alone.

For me solitude is my savior. I feel the most calmness and clarity when left alone with my own thoughts and actions. On my own I can rest and repair the damage.

Your personal experience may be different than mine because we all after all are individuals.

Have you ever experienced Autistic Burnout?

Autistic Women – Why Are We Invisible?

Chameleon woman – I’ve been doing it since puberty. Logically the next evolution for a “Parrot Child” is a chameleon – right?

When many of us were younger it was thought that Autism was only found in boys. A gender stereotype that is still hurting us today. Some of us are missed completely or misdiagnosed with other conditions. Some go to the grave without knowing they are Autistic.

A few of us are lucky and eventually figure it out. When we discover the truth it is as if a light bulb has gone off. Growing up we felt alien but did not know why. Most days I thought everyone around me was crazy – having no idea how different our perspectives were.

They teach you to be a lady, have manners and be polite. Flailing about and acting crazy is very unbecoming of a young girl. We learn to hold things in. We read books and create art. We collect pretty things in our rooms, locking away our feelings.

Social pressure is huge on young women. Society expects you to be a certain way.

Over the years I’ve learned to fake it but learning to play “normal” has taken years of practice, constant trials and errors. It is still a character that tires me out and requires a lot of work.

Girls are pressured from a very young age and perhaps “boys will be boys” could be one reason Autism is more obvious in males than in females.

I was a tom-boy and my Autism was obvious until I hit puberty and became more aware of the ways I differed from my peers. At that point I made a conscious decision to study my peers and fit in. It was a bit like a science experiment.

The more I worked on this project the less I felt like myself. For the first time in my life nobody was bullying me. I was happy to feel safe and kept up the act through high school.

After years of being fake it was hard to even know who I was any more. I felt ugly and dirty. It’s hard to explain but just thinking about how fake I was (years ago) makes my face pucker. I don’t like that person and I pity her.

I’ve recovered from that but diagnosis was a major part of my recovery. It explained so much and everything. There were always little things that I’d never listed but if I did they would all say – Autism.

All the pieces of me that I hid from the world, the strange things – Autism.

Chameleon woman.  Invisible Autism. Anonymously Autistic. Nobody sees me struggling.

 

#SheCantBeAutistic #InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic

 

Our Physicians Don’t Know Autism

I can hardly believe the ignorance that is out there. In the world in the medical field. You would think that people who practice medicine and see people every day would know more than the stereotypes of Autism.

When you go to a medical professional you hope they will understand your medical conditions not doubt them.

I’m seeing a new physician – for me this is a very stressful change. It is a new person, I am driving to a new place, they have new procedures. Being in that office with that florescent white light burning my brain is hard.

My heart is pounding and I want to run out, so I close my eyes and count my breaths. I focus on the feelings in my lungs and the darkness until I am calm. There are several moments where I must do this through the examination.

At the end I mention my Autism, expecting for her to simply add it to the chart.

I handed over the wrinkled and folded diagnosis paper that I keep on hand for emergencies if I cannot talk. Already I could tell she was questioning it’s validity. “I’m surprised she put you on the spectrum” her overly friendly and patronizing tone was something that even I could pick up on.

There was so much I wanted to tell her. Desperately wishing to educate her – I was paralyzed by her doubt. This is a medical professional before me – if SHE doesn’t know we are all in trouble.

I wish I had said more but I was now trying not to cry.

I told her that I keep most things to myself and that growing up feeling different on the inside (but not knowing why) teaches you to hide everything that is strange about you. You begin to fear your own uniqueness. So you learn to hide everything that is different about you.

You learn to blend in as a survival tool.  All my mess is on the inside.

We need more education. If our medical professionals are still stuck on the stereotypes no wonder there are so many misdiagnoses out there and so many Autistic girls being missed.

Autistic women do not follow the male Autistic stereotype – and honestly not all autistic men follow it either.

This is a big problem. Where do we even start?

#SheCantBeAutistic #AcutallyAutistic #AutismAwareness #AutismAcceptance #AnonymouslyAutistic

Oops – I’ve Lost Another Friend

Oops I’ve lost another friend

I thought that we were close

But you’ve got needs

that I can’t fill

You want more from me than I can give

I leave you feeling empty

You tell me friends hang out more

When my social anxiety gets the best of me

and I would cancel

at first you calmed to understand

Eventually you got tired of waiting

telling me you wanted more

I know now

and it breaks my heart

that I must let you go

Goodbye my friend of many years

My friend who cannot understand

I hate to see you go

and will miss you when you’re gone

but your no good for me

when you hurt me so

your words cut deep

we cannot repair

I’m afraid you’ve got to go

A poem about losing friends.

Being Autistic has made it more difficult for me to make friends. I don’t bond with everyone but deeply care about the friends I have. Loosing a friendship is like burying a friend.

It is a great and painful loss but if the relationship is not mutually beneficial than I can see no point.

I have Social Anxiety Disorder – sometimes I cancel plans but it doesn’t mean I did not want to hang out. My fiends feel unwanted and one by one most of them have drifted away.

People don’t understand and I can’t blame them for that – doesn’t mean it does not sting whenever it happens.