Category Archives: Relationships

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

 

 

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.

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 Don’t Want To Rock & Roll All Night

I have a hard time making connections with people through face to face interactions. Something inside me doesn’t allow me to bond to people partially – I have close friends (very few), colleagues (people who think they know me), and strangers.

There are no shades of grey with me. Things are black and white most of the time.

I am friendly with everyone but unless you earn your way into my inner circle I will keep you at a distance. Most people have lost interest in any type of relationship by the time I’ve come to my decision about weather someone is trustworthy or not.

Being unable to read body language and faces puts me at a disadvantage in social situations and makes it harder for me to get a feel for people. I’m painfully aware of this disability and it has made me overly cautious, because people have taken advantage of my  naivety in the past.

Face to face interactions with people can be very draining for me, even when in the company of good friends. Too many people in one room can be disorienting. I can’t function in an overly busy environment. It’s hard to filter out all the voices.

I don’t care for alcohol and parties with bumping bass music and throbbing lights leave me wanting to run like a rodent in the night.

These are the things my peers bond over and enjoy – these are the things I want to avoid.

I don’t want to rock and roll all night or party every day.

 

 

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.

 

Mental Health & Chronic Illness – Things People Don’t Understand

Toughen up – that phrase makes my arm hairs stand on end… my family members said it a lot, so did my teachers. Stop calling me weak – on one hand I hate being told that.  Regardless, coming from my mother it did me good and helped me become the person I am today.

The other one that REALLY gets me is “you’re not trying hard enough”. This is the worst thing you could ever say to someone who is doing there honest best. It’s soul crushing. It doesn’t matter your intentions – I hear “your best is not good enough“.

Certain simple things like timing in conversation trip me up. My brain is working overdrive but still I make simple mistakes. Because I can be extremely skilled at complex tasks people say things like – “you are too smart for this” & “you are not trying hard enough”.

On the inside I am dying because my best is perceived as laziness. I’m working so hard –Not trying? They can not comprehend how difficult this is for me.

People assume I am being rude and I rub them the wrong way. I’ve been told I can be perceived as standoffish and distant – not really what I’m going for. It keeps people away.

I am very isolated because of my limited social skills. My awareness of my social impairments has helped me to develope severe Social Anxiety.

I don’t go out, I don’t socialize – I get more than enough human interaction (the wrong, over stimulating, kind) at work. Other than going to the office, I never go anywhere without my husband.  He is my rock and is wonderful to me. He seems to pick up on the things that I miss. We compliment each other nicely.

I don’t bond with many people, but the people who I do bond with have my loyalty till the end. When you can’t read people and tend to be gullible you have to guard your inner circle. I don’t want to let a snake in the hen house.

My co-workers are all wonderful but unfortunately we are never on the same page. They go out, they dance, they drink (a LOT), they get loud and crazy. None of that appeals to me one bit. They care about brands and dinners at expensive restaurants – I feel like these things are a waste of money. I don’t know how to talk to them because we have nothing in common.

My thoughts are on my mortgage, family, my current obsession, and saving for days when I may no longer be able to work. I can’t throw money away like they do – I don’t have money to waste.

The risk of loosing work is high when you have a chronic illness. If you use too many sick days your boss will fire you. I am healthy enough to work right now but I don’t know if this will always be the case.

There was a time years ago when I was sick 3 days a week – the beast. I fear it’s return more than anything.

I am “disabled” but not on any disability. I don’t have supports other than my husband’s care. I’ve been disabled to the point where I really could not live a good life before – it was horrible and I never want to do it again.

If I get sick I will lose my job and my home. More than anything my home is my safe place. Living in apartments was hell with my sensory sensitivities. Maintenance men insisting they have to fix something are not something I can deal with on high sensory days – neither are loud neighbors.

Having my own place is essential to my mental health and having a job is essential to having a home.

I also spend more out of my own pocket for medical expenses than most people. Almost every doctor I need to see is always a specialist who is “out of network”. I don’t get all the recommended medical things done because the costs have gotten ridiculous.

I have to eat organic and gluten free because the chemicals and gluten make my stomach violently ill. I am chemically sensitive – something that is common in people with AS that I speak to.

Money is always tight but we are getting by. I am trying my hardest to keep everything in balance.

All I can do is take care of myself and hope for the best.

Working Full Time (Is Killing Me) – Autism at Work

Now that I know the reason for my social impairments and shortcomings, I am more accepting of my own failures.

Before I knew I was Autistic, I remember crying alone wondering why I could not just figure out the nuances of conversation. Why even when I thought I was doing everything right to have a polite conversation, people told me I still spoke out of turn and repeated myself .

The way I relate to others is somehow of-putting. I tend to ramble and turn conversations back onto myself. People think I don’t care about what they have to say but really, I’m just trying to say – “I understand.”

In fact I am also much more aware of my own failures now – this was hard on my self esteem when I was first diagnosed. Suddenly all of my flaws were illuminated, in my face, and so official.

I realized that I could not read faces, realized how much I was struggling just for timing in conversations, realized that auditory processing delays make face to face interactions stressful and overstimulating.

I was pushing myself to the point of sickness trying to keep up with the social demands of my busy work place. The things that most people find rewarding, busy events and parties, are not fun to me. I don’t want to go out and drink and I don’t feel relaxed around my coworkers.

All that fun was not in the job description and it was taking a toll on me.

Happy hours, networking events, international travel, restaurant openings, celebrities, private screenings of movies that the public can’t see yet – my job is pretty amazing.

The truth is, I rather not have all the extra perks that my job “offers”. I’ve learned that the politics are complex and if you don’t attend certain things your boss feels like you are ungrateful. I try to attend the very minimum, but even that is pushing it for me.

I am surviving in energy conservation mode. I have no social life other than the one my office creates.

I’ve stopped hanging out with my real friends because at the end of the work week I am dead. I have no energy or desire to socialize, burnt up and spent, nothing left for the people who matter most to me.

But I am living the dream right? I have my dream job and it seems to be killing me.

I need more down time than most people, and the more social I am the more down time I need. It is hard for someone running on spoons to have a full time job, but quitting is never my option.

I have gratitude for my job, because TOO many Aspies are unemployed. I am thankful every day for my very difficult and exciting job – even on the worst days.

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.