Tag Archives: neurology

Autistic Confessions – I Literally Don’t Know How to “Talk” About My Autism (but I CAN Write it)

It is beyond frustrating that every single time I try to talk to someone in a face to face conversation about Autism and how it applies to me I am unable to make a clear point. What drives me crazy is if I am alone in a room I can easily type something up. Does this happen to anyone else?

People being near me scatters my brain unless I can tune them out – even people I like but it is WORSE with strangers.

This doesn’t just happen with Autism it also happens to other topics that I could write books about. I try to explain something to someone and  can tell they are completely lost.  Asking if I can send them an email later will raise an eyebrow. What is an Aspie with verbal communication impairments to do?

Oh – tell my readers!

What IS this? Do you experience it?

 

With love and curiosity,

Anonymously Autistic

“Anna”

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

My Biggest Secret – I’m Smart!

Most people who meet me have no idea. I  am a fly on the wall or a clown making jokes, deflecting from my deepest darkest secret. Nobody would ever guess, because my verbal (spoke) vocabulary is nothing particularly remarkable.

People sometimes describe me as “funny, silly, and quirky”. My coworkers describe me as “positive, friendly, warm, and kind”. Apparently the word feels as if I am a bubbly personality – they have no idea of the deep dark secret hiding within me.

Nobody knows that I am smart. I don’t run around wearing my IQ (144 SD15) on my blouse. That number is subjective.

If a cat tell’s a fish he is stupid because he cannot climb a tree he will never appreciate that the fish can breath under water – the cat cannot breath under water. The fish and the cat are different not less (as Temple Grandin said).

Most day’s I don’t feel particularly smart. I am great at problem solving, writing, and other random things, but sometimes struggle  greatly with basic life skills.

It is a frustrating enigma. People often say things like “you’re too smart for this” – I remember my mother saying this to me repeatedly through my childhood. Whenever I make a mistake it is always “because I am not trying hard enough”.

Growing up you learn that bragging does not bring you many friends and your parents beg you to stay humble so you hide your talents. Hidden under the dirt  and rocks your beauty can not shine.

My readers – you are my dear friends. Nobody knows my secret but you. Please do not spread this information around because nobody who meets me would ever believe it. 😉

Let your light glow. Do the things you love, be yourself, sing off key.

We are all smart in different ways. You cannot test a cat and a fish for the same skills.

Autistic Confessions – I Can’t Follow (Spoken) Directions

I can’t follow verbal instructions – unless you give me each item one step at a time.

Spoken words are often misheard due to sensory issues so it is easy for me to misunderstand verbal directions.

If you start to give me a list of things to do and I can’t find a notepad I may start to panic.

If we are out in public and you tell me I need to remember to do something later – it probably won’t happen.

My working memory is not great and I have to make checklists and keep a calendar to stay organized.

If I am trying to hold information in my brain (by saying the thing over and over again in my head) and someone interrupts me mid task the information is lost forever – even if it’s something simple like a first and last name.

Typed or written instructions are best for me, this allows me time to translate the task into my own way of thinking – which is primarily visual.

Also, because I tend to take things very literally, this allows me time to question if my assumptions about the instructions make since – preventing embarrassing mistakes.

Please don’t tell me what you need me to do – unless you know I’m ready to write things down. I hate letting people down but I REALLY can’t follow spoken directions

 

 

Hyperlexia – I’ve Still Got It

I’ve always been hyperlexic. My verbal comprehension has improved greatly since I was a child, despite my auditory processing difficulties. Even though things are much better – I’ll always be  hyperlexic.

It’s a good thing I LOVE reading.

Hyperlexia is a syndrome that is characterized by a child’s precocious ability to read (far above what would be expected at their age), significant difficulty in understanding and using verbal language (or a profound nonverbal learning disability) and significant problems during social interactions.

Hyperlexia – CSLD – www.csld.org/HyperlexiaDefinition.htm

It is beyond frustrating to have so much to say and not be able to express things in face to face conversations. When I try to talk it’s as if I know the information but my brain is holding back the words.

My arguments are ineffective and unpersuasive and the words come out making me sound uneducated and shy. I cannot beg or force the words. Nothing helps the words are unavailable to me.

I am not the person people see in these moments – I am the voice behind my keyboard.

The thoughts and information is still inside, even when I cannot express it as you stand in front of me.

I am so grateful for my keyboard. I am so happy that I learned to type and write in school. This has turned my Hyperlexia into more of a blessing . I am so grateful to have found my words.

Autistic Confessions – I’m an Information Addict

Hi, my name is Anna and I am addicted to information.

I’ve been reading since I was two years old. It started with children’s books but I quickly moved up to encyclopedias and dictionaries.

I had and still have Hyperlexia, a condition that is frustrating beyond all of the words that won’t come out of my mouth.

I can read and type my thoughts just fine but often appear “dingy” and confused in face to face conversations.

I absorb and understand just about everything that I read. If I am not reading I am writing about things I’ve read or obsessing over the facts that I’ve collected in my brain.

Endless information, building up my catalog – hording facts. I read science magazines, websites, books, and articles. I listen to Audible, watch documentaries and YouTube videos.

Sometimes I read so much that I run out of books or videos on a particular topic.

I can’t stop. I am addicted to information.

The Meltdown

Sometimes it creeps on slowly

I see it coming hours in advance

Other days it hits me like a freight train

I feel like I am always holding off The Beast

Swimming through mental sludge

My head is pounding and my eyes burn

Out in the world I am unprotected

I need to find a private space

Being alone is the only cure

Finally I am home

Worn down and empty

I find myself in bed early

Rolled tightly in blankets

Soothed by darkness

Maybe if I sleep the monster will leave

Sometimes rest is all I need

There are days where nothing can save me

When all my senses begin to run together

Sounds and sights become dizzying sensations

I cannot move but I must

The room is spinning so fast

I make it to the bathroom just in time

as motion sickness overtakes me

I am paralyzed by an indescribable pain

My body and mind stop working together

Getting back to my bed is challenging

So I stay on the floor in my bathroom

Curled into a tight ball

Hiding under a pile of towels

Thinking is impossible

Nothing works

The monster is in control

Total meltdown

Pain and confusion

The Monster has me

Nothing left to do but wait it out

A poem about an Autistic Meltdown.

 

Remrov – Talks About the Spoon Analogy Regarding Energy

The Spoon Theory is an amazing way to explain the energy drain that many Autistic people feel. If I get too low in Spoons I get VERY sick so it is important for me to conserve my energy and avoid too many activities that take away the most spoons.

Some activities take more out of me than others, even enjoyable activities can be taxing on my spoon supply. Socializing and having a full time job uses almost all of my spoons most days. Sitting under florescent lights or being in a loud noisy environment slowly drains my spoons as well.

I limit my social activities and don’t get out on days that I go to work since these take up so much energy.

Also I need time to “regather my spoons”. After I get worn down it takes time to build my energy levels back up. It is extremely important that I have quiet time to recover or I can get stuck in a repeated meltdown / burnout loop.

There Are Still People That Don’t Believe in Autism

Of all the people who I encounter the people who don’t believe in Autism are the hardest to deal with. Like the Tooth Fairy or some other mythological creature, they say “Autism is something that doctors make up to give drugs to kids who weren’t raised right”.

They don’t understand that Autistic brains are physically and chemically different than “normal brains”. The non-believers don’t understand genetics, psychology or temperament. You can’t explain the science because they often don’t believe in science either.

As I stand in front of them they tell me that I “just need more practice” or am “not trying hard enough”. Sometimes they blame my problems on my parents for raising me wrong, which isn’t far since everyone in my life did the best they could.

My best is never good enough for these people and my pleas for help are only excuses to them. Toxic people, who may mean well, frustrating me beyond all reason enjoying their ignorance.

This has got to change. Autism is a real thing. I am a real person. I am doing my best and it’s all I’ve got.

How is it that in this day and age there are still people who don’t believe in Autism?

Autistic Confessions – I’m Paying Attention

I don’t need to look at you in order to pay attention to you.

Actually, looking at you while you talk is very distracting to me.

It may look like I am playing with something in my hands, while my gaze is someplace far away, but I’m here with you – working to process things in my own way.

Looking at your face doesn’t help me. There is not a lot of information there for me. My brain doesn’t naturally pick up on expressions.

This got me in trouble at school a lot growing up.

Some faces are too much. I don’t like to make eye contact with strangers, often looking at someone’s hair or mouth when I need to fake it.

I may not look at you while I am talking – this is not a sign of disrespect.

I am working hard to verbalize my thoughts. It’s not easy for me to focus on my words and your face at the same time, unless I know your face very well (or really like it).

To the outside world I seem disinterested and aloof – but I promise I am here with you, working things out in my own way. So much is happening below the surface.

When I appear to be off in my own world –  I’m not as far away as I seem.