Category Archives: Alexithymia

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

Why I’ll Always be Anonymously Autistic – The Unicorn Theory

Sometimes Aspies are caught off by my blog’s title. People ask me if I am Anonymously Autistic because I am ashamed of my Autism. My long time readers know me better than than that, but some of you are new. Welcome, please allow me to explain.

I started this blog anonymously because I love my privacy, not out of a shame for my Autism.

In fact, I quickly realized that I needed to share so others could see Autism from my perspective. Some days suck, but over all I love my life and would never want to be “normal” or Neurotypical.

I generally keep to myself with personal things. Speaking about matters of the heart has never been easy for me, so I don’t. This blog became a place where I do something completely out of character – share my feelings.

For me, it is easier if the people around me don’t know my feelings or else they may ask me about them and I would be forced into unwanted conversations. I enjoy talking about my passions and other matters, but my feelings and emotions have always been sacred to me in a way.

The more I write the more confident I get in speaking about Autism. Most of my problems come from when ever I share. I hide my emotions and keep things to myself. People don’t get to know me and don’t see my Autism.

Always calm and composed (because I always run away and hide before I fall apart). It looks like I’ve got it in control. Nobody ever sees me struggle.

People say these things in the nicest ways, they have NO idea how much their words hurt or how wrong they are.

“You’re not really Autistic right? It’s a misdiagnosis?”

“Asperger’s? You are too nice you definitely don’t have that! I can’t believe it.”

“Are you sure? Have you gotten a second opinion?”

“You are NOT Autistic.”

“There is nothing wrong with you. I think you are great!”

“We’re all a little different.”

Or when you ask for accommodations for sensory troubles.

“Everyone likes natural light. Its not fair to give you special treatment.”

“I know you said you wanted to meet in a quiet space, but I think you will love this bar.”

“It’s not that bad. Look everyone else is having fun.”

“I think you can do it, if you try harder.”

“Don’t make excuses.”

Worse is when they say nothing at all. When you say something they give you a look. Doubt. I recognize it now that I’ve seen it over and over again.

The face people make when they think you are telling them a decelerate lie.  It is a look that stops me cold in my tracks and is the reason I’ve stopped mentioning my Autism in face to face conversations laity.

I have a theory that if people saw a unicorn in a field of horses they would mistake it for a white horse, because they do not believe unicorns exist.

I am feeling a bit like that unicorn. People can’t see me because they don’t know that Aspies like me are out there.

A unicorn, something that challenges their beliefs. I am right in their faces and they can’t even see me.

 

#InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic #SheCantBeAutistic

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”

Coming Out Autistic – When You Don’t Believe

Coming out Autistic is hard. It’s even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like –

“Why are you complaining all of the sudden? You never used to talk about Autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.” 

 

These people are less than half right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people nobody believed me – so I stopped.

When I was in school I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick to. The doctors told my mother that there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up so I spent my life sick, in pain and discomfort.

My mother told me I had to go to school or she would go to jail, not wanting to loose my mother, I sucked it up and went.

Side note – remember Aspies take things literally. Be very careful what you say to your children.

 

I suffered in silence for thirty years.

I’ve always been different, but my mother told me never to reveal your flaws – so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard, was what eventually lead me to an Autistic Burnout (Autistic Regression).

Finally as my sensory symptoms intensified, after years of confusion and being told that “everything was in my head”, at the age of 30, I received a formal Autism diagnosis.

Am I happy to have a disability?

No. I was chronically ill my entire life and everyone always told me I was faking it. I am happy that FINALLY a doctor has an answer for me. After years of searching I know WHY I am always sick.  I am happy that I finally have the answers and information needed to take care of myself.

I am happy to know that my “illness” is not something more serious or terminal. Part of me used to think that I might have some sort of cancer or rare disease that might kill me some day. This thought is gone now.

They are also correct about my obsession with Autism being recent. 

I was Anonymously Autistic for thirty years and didn’t even know it.

I never spoke about Autism before learning about Autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero) I didn’t know what Autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about Autism.

Here is where people always get things wrong. 

I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger. 

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain”.

I am reminded of my mother’s words – “You’re not dying – get up!”

They don’t know about the secret headaches and physical pain caused by certain sensory experiences – if I try to tell them they accuse me of complaining or exaggerating.

I’ve been getting up and acting like everything is okay for a long time now. It’s tiresome but apparently I’m so good at passing that even some of my closest friends can’t see (and refuse to believe in) my Autism.

It hurts that they think I am lying or crazy, but I try to remind myself that they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been very supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Coming out Autistic is hard for a multitude of reasons – people don’t believe you, people don’t know what Autism is, people think Autism can be cured, people think Autism only affects children, the list goes on and on.

Hands down the worst thing about coming out is when you try to come out to someone close to you and they basically tell you – “No, you’re making this up. There is nothing wrong with you.”

Cut down like a tree.

When you don’t believe it hurts so bad that I want to stop sharing but I can’t because the world needs to know – for all the other Anonymously Autistic people in the world.

#AnonymouslyAutistic #ActuallyAutistic #SheCantBeAutistic

 

 

Autistic Confessions – My Own Feelings Are a Mystery to Me (If I Don’t Write)

Believe it or not I suffer from alexithymia. I have taught myself to check in and figure out how I feel but I don’t do it naturally or automatically.

Before I started writing I never knew how I felt. I had feelings, but to me I was good or bad on a sliding scale. Most of the time, unless I check in or are on one extreme or the other I don’t know how I feel.

Mindfulness has been very helpful to me, constantly scanning my body and reminding myself to pay attention and be in touch with what is happening inside. Awareness was only half the battle for me.

Being aware of my feelings and putting things into words are two very separate skills.

I’ve been writing for years. As a child I wrote rich fiction, always imaging myself as the main character, playing out social situations through my stories.

The older I get the more I crave facts than fiction. My wiring has also changed. Personal journalism has always been helpful to me.

I don’t think that my thoughts naturally flow into words unless I am writing, so when I have a lot on my mind I write often. Sometimes I write things in my head, over and over again.

When I get to the page the concept erupts revealing pieces of myself that I wasn’t even aware of. I surprise myself every day.

 

Autistic Stimming & Hand Flapping

“If you’re happy and you know it flap your hands.” Anybody else flap their hands like a little chicken when they are really happy or get startled / surprised?

Until I learned what stimmig was I had no clue I was even stimming – and I stim all the time, a LOT. Most of the time I don’t even realize I am stimming.

Stimming is something that Autistic people do to help them regulate the constant onslaught by the environment on their senses. My brain is constantly flooded by the unfiltered information poring into it.

When I stim, I am able to tun out some of the extra noise, calm down, distress, relax, and focus.

Society tends to want people to sit still quietly, something I struggled with as a child. I remember fighting with my teachers, who wanted me to sit still. When I could not move paying attention in the classroom was impossible.

Autistic people need to stim, in a way it is a lot like breathing for me.

I have a friend who has Turrets. She told me that she can hold in her ticks but they build up and doing so feels horrible for her. This is definitely how I feel about stimming. It is like an itch that won’t go away – I have to scratch it and eventually I will no matter what.

I used to stop myself from stimming and would try to hide my stims. Now that I know why I stim and how it helps me to regulate myself.

If a stim is not appropriate (too loud or harmful) I try to switch it for something positive.  

Below are just a few of my own stimming behaviors. 

Finger Rubs / Silent Snaps

Finger Snaps

Tongue Flicking

Finger Snaps

Stim Toys / Jewelry

Look Out a Window

Sniff Something Nice

Listen to the Same Song for an hour over and over.

Dance

Hum

Hand Flapping

Rocking

Bouncing

Verbal Stimming / Mouth Clicks & Noises

Hand Rubbing

Hand Tapping

Foot / Leg Tapping

Skin Picking / Pinching

Body Tightening and Relaxing

Stimming is self care – don’t stifle the stim!

He’s Back! The Aspie World, one of my favorite Vlogers on YouTube is back this week talking about  Autism, stimming, and hand flapping. I can take NO credit for the video below PLEASE check out and subscribe to The Aspie World on YouTube for more amazing content.

Link to video HERE.

Aspie Sean Week 47: “Don’t tell us we’re high functioning like it’s a compliment”

First off – do not tell me that I am high functioning or low functioning. Ever. The truth is my functioning level varies from day to day. Someday just getting out of bed is an accomplishment and other days I am out and about concurring the corporate world.

Functioning labels are not helpful for anyone and they suggest that Autistic people who cannot pass off as Neurotypical are somehow less – despite many non-verbal Aspies (like Carly Fleischmann) being very intelligent despite difficulties controlling their bodies and communication impairments like Apraxia and Alexithymia.

It makes me SO mad because I know how it feels to be underestimated, for people to think you are stupid when you don’t express yourself the way they expect you to. The voice that comes out of my mouth never measures up to my inner voice or the voice that comes out when I type.

I really think high functioning means you hide your AS traits well… which is actually what someone told me once “you hide it well” like THAT is a compliment. “You hide who you really are very well so that the rest of us can feel comfortable” is what I hear when somebody says that.

It’s offensive and needs to stop.

Aspie Sean – a man with great perspective and who is very talented in speaking out loud agrees that saying “You must be high functioning” is NOT a compliment.

I can take no credit for the video. Please subscribe to Aspie Sean for more great content.

Autism is Full of Misunderstandings

Autism is marked by impaired communication abilities so it would make since that Autistic people often feel confused and misunderstood.

I don’t pick up on subtle social cues and hints. If you don’t tell me something directly, I’ll miss it. If something is implied I might not catch it.

Your annoyed face may not be registered in my brain – so if I am ticking you off I probably won’t know until you blow up in my face. If that happens I am completely caught off guard and have no clue what I did wrong.

I sometimes process things on a delay. I think it’s because of the amount of information I am able to take in at one time. There is so much to process that my brain saves some information for later and I may not process it for seconds, minutes, or days. This makes for inefficient conversations.

I have alexithymia and inappropriate affect so my face may not always be appropriate for the situation or conversation. Sometimes I laugh when people give be bad news. Apparently you should NOT laugh when someone tells you their mother has just passed away.

People often misunderstand my intentions. When I am too quiet people think I am hiding things and when I talk too much I am “selfishly” dominating a conversation. I don’t mean to do either of these things though.

When I am quiet it is because I lack confidence. I am painfully aware that I have trouble with timing in conversations. Sometimes it is easier for me not to talk so people don’t think I am rude.

When I am relaxed and with friends I tend to talk too much and over everyone. All my observations are from my point of view because I can’t take other people’s perspectives easily which makes me sound self centered.

Conversations are like a chess game where I can’t remember the rules. People think I don’t care to talk or to listen but really I just don’t know when I should talk because unfortunately – Autism is full of misunderstandings.

 

Am I Ready for an Autism Diagnosis?

One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I can not answer that question.

The decision to seek out an Autism diagnosis is a very personal one and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my Autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand Autism. I was not ready to talk to a psychologist because I was still lying to myself that my symptoms were non existent or that there was some other explanation for them. Autism seemed so final I was not ready to accept it.

When I started to think about diagnosis I quickly realized that there was a very limited pool of doctors who were qualified or even had experience with adult women. None of the adult Autism doctors I found took insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult Autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the Autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about Autism and talking to other Aspies I had a hard time describing the feelings and things that were going on inside my body. Reading about Autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my Autism that makes it hard to describe my Autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel – I don’t know.  Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes and because of my alexithymia I believed them. Because of this some of my feelings and emotions got confused. I needed to untangle this mess before I could accurately talk to a psychologist about my Autism.

Once I had finally straightened all of those things out I felt like I was ready for an Autism diagnosis.

I journal a lot and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10 page paper to my psychologist explaining my life story without using any of the Autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me and I answered her questions honestly. I was extremely nervous the entire time – afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five page paper further explaining things I could not express face to face.

The way she had asked about stimming had confused me and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would STRONGLY recommend doing so. Because I take in information and do not process it right away, sometimes on the spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor EVERYTHING that you have trouble with. Make a list.

Autistic burnout (sometimes called Autistic Regression) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the real world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supped to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

 

 

Ask an Autistic – What is Alexithymia? (Difficulty Expressing Your Emotions)

I was VERY excited when I logged onto YouTube today and saw that Amythest Schaber had posted a video. This video goes over something that I have always struggled with and have never been able to express.

I suffer from extreme anxiety – however I do not always know how I feel. My body is going through VERY intense symptoms physical symptoms of anxiety but mentally I tend to be unaware of the anxiety building.

I have a very hard time with cognitive empathy but when I am near someone who is feeling strong emotions I often feel their feelings inside me. I do not like to be around people when they are having strong emotions.

Sometimes someone else’s emotion may influence me without me even realizing my mood has changed. It is wild how it creeps up. Mindfulness and writing help me. I have to make an effort to pay attention to what my body is doing.

Please check out Amythest Schaber on Youtube and subscribe to her for more GREAT content. I can take NO credit for her video.