Category Archives: Anonymously Autistic

Basic Accomodations – I’m Not Disabled By My Autism, I’m Disabled By Unacomodating People

In an earlier post titled Autism is Not My Disability I said

“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”

Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.

First I want to clarify that there are parts of Autism that are disabling.

We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).

These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in itself is not a disability. This does not mean many Autistic people are not disabled.

I wish it weren’t true, but many of us are.

Personally, I am not sure if chronic illness will eventually leave me unemployed and unemployable. It is a constant fear as I scramble to get my health under control. Doctors are apathetic and if you’ve learned to act “normal” people doubt your diagnosis every time you mention it.

There are certain things I need help with, some simple accommodations that make my life easier. In work and in my personal life I tend to ask for the following (although people accuse me of being difficult) :

Sit somewhere quiet. At work I may wear headphones with music or ear plugs. Working from home is also a great option. My ears are so sensitive they pick up everything. I can’t focus on one conversation or catch all the words in a loud busy room. I like calm restaurants or off peak times.

Sit somewhere with the gentle lighting. Natural light without glares and certain soft artificial light is something I need. Modern office light is the worst. The wrong lighting or lots of glares makes me feel sick and hurts my eyes and brain. If I can’t escape I may put shades on or wear a hat indoors.

Ask for or make a plan. I like to know what’s happening and am honest about not enjoying surprises. I also need to know when things will end. Sometimes I may stay choose to late, if not, having an end time helps me to relax.

Say no to people. I am not a social person and can’t take a lot of going out. Socializing drains me like nothing else. Now that I work full time I have a hard time going out more than a few times a month. I say no to people more than they are used to but my health is important to me.

Try to get everything in writing. I have a hard time following verbal directions. Autism does impair some of my face to face communication skills. I also have impaired sort term memory and executive functioning.

When I ask for someone to put something in writing for me, it is one of the most important accommodation that I ask for. My reading level is FAR above what I can take in though speech. This helps ensure I don’t skip any important details.

Special treatment. It’s not fair for you to get special treatment.

If I am lucky people oblige me, however I get a lot of push back sometimes.

I feel like these accommodations are reasonable. When I have these things I am able to function at an optimal level. Without them I end up struggling to keep up with the basics. If you give me just a little I can go far.

I think differently and go about things in a different way. On my own this has never been a problem. My problems only appear when other people insist upon me doing things their way, insisting that I do things like everybody else.

They can’t see my disability and think I am asking for an easy way out.

They can’t understand how badly I need to do things my way and don’t see how much I struggle without accommodations. They are hard to get especially in the work place.

All I want is to do my best.

My Autism is not my disability – unaccommodating people are.

 

 

 

Autistic Confessions – I Just Want to Be Alone – The Stigma of Solitude

I love being alone. In fact, like most introverts, I need to be alone in order to recharge my batteries.

The difference between me and most introverts is that they still “need” or “crave” social activities and being around other people. I simply don’t and never have.

Always alone, when I was young and through my teen years (and even part of my adult-hood) people made me feel like my tendency towards solitude was pathological. I remember my parents and grandparents trying to force me to go out with friends / leave the house.

They forced e so hard, insisting that I make friends or be lonely, but I had almost no friends.

I’ve always had a pattern of only having one friend at a time and hanging out in groups has never been fun for me. Having more than one or two friends is still very difficult for me.

Your whole life people tell you you will be lonely if you don’t have friends but I feel most alone when I am around the wrong people or even worse too many people. I never feel alone when I am on my own working on something I am passionate about.

To be perfectly honest sometimes I feel more affection towards my projects than for most people. I am very task driven and calculated. People often take my seriousness for coldness. The few who know me well know me as funny and warm.

One on one interactions are great if they are with the right person.  I can even do groups of up to three people if I keep the interactions short. More people needs to equal a shorter interaction for me.

Also, I am not opposed to meaningful conversations. The minute people start talking about pop culture and other mindless garbage my mind wanders. I am off in my own head until something brings me back to reality.

Neurotypicals or “normal people” take for granted things that are a LOT of work for me. Simple things, like figuring out when it’s your turn to talk. Despite focusing almost ALL my brain power on timing in conversations STILL I manage to mess this up every time.

Even when I am having a great time being social, my brain wears down fast when I have to focus on conversations. It is real work for me. The more conversations and the more people at a gathering the faster I drain out.

I’ve heard the clever term social hangover. For me this is a very accurate description.

By the time I am done with a 2 hour hangout with 4 people I am feeling dead and drained. It takes me a full day to recover from most social interactions. Add more people or more hours and I need even more time to recharge.

I can only handle one or two of these a month or I start to have an increased frequency of indigestion and meltdowns.

When my job started having one or two social things a month I stopped hanging out with the few friends I had. The truth is now all my social energy is spent on coworkers who I don’t relate to – because I am trying my hardest to “play the game.”

I turn down as many office happy hours as I can, but still feel like I don’t attend as many as they want me to.

Social politics in the work place are hard on us Aspies but we can’t escape them. If we want to succeed in an office we have to learn the patterns and unspoken rules (I hate unspoken rules – I like CLEAR rules).

If we can’t figure out the mysteries of the office we have to make our own way somehow or risk being stuck in a career that doesn’t fulfill. We are often under paid and under appreciated in the work place because we don’t kiss ass and “play the games” that our neurotypical peers do.

Without these skills we are at a disadvantage. There is pressure to fit in.

My hyper-social coworkers who like to go out several nights a week think being out and social is normal but for me a night at home is more acceptable. I am “antisocial” a “recluse” “book worm” and “introvert”. So many titles.

Why does wanting to stay in even need a title? Why does society shun the loner? There is nothing wrong with me wanting to spend most of my time alone. If I am truly happy what is the problem?

Its time we break the stigma on solitude.

 

#ActuallyAutistic #SheCantBeAutistic #AnonymouslyAutistic #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

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

Taking The Easy Route – A Poem About Invisible Illness

How dare you say I’m taking the easy route

When you have no idea what I’m going through

You tell me I’m not trying

But this is all I’ve got

Sometimes just doing normal things

Takes up all my energy

There are days when normal life experiences

Make me physically ill

Work a little harder you say

I keep pushing

Pushing myself to exhaustion

Just trying to keep up

You’re not stupid – you say

Trying to pay me a compliment

Look it’s not that hard

This is all you do

But for me it is difficult

You make these things look easy

and can’t understand why I can’t

So you say I’m taking the easy way

Because life’s so hard I will take a break

Where I can get one

Always looking for the easy way out

Poems about Autism & Invisible Illness. These are the one sided conversations in my head. Things I never say face to face – because most things process on a delay. In the moment I often know I am upset but not exactly why. It is frustrating.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAustim #AnonymouslyAutistic

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”

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 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

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.