Tag Archives: invisible illness

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.

 

 

 

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”

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.

 

“You’re Obsessed with Autism”

“You’re obsessed with your Autism. Ever since your diagnosis you talk about it all the time. You never spoke about these problems before.”

Keep in mind NONE of these people know about my blog. Imagine how obsessed they would think I was if they knew I had an Autism blog and contributed to a popular disability website. These are things that certain people will never understand.

I want to help. People should not have to suffer in silence.

I never know what to say in face to face conversations with friends and loved ones who doubt.

Finally after years of suffering in silence I am talking, speaking up and trying to speak out. Face to face the words never come.

My entire life I was “sick”. Doctors could not find anything physically wrong with me. They told my mother it was all in my head and that I needed to toughen up.

Finally I have an answer. The truth – and it feels liberating.

As a child I was tired of being looked at like I was crazy and told that I complained too much so I stopped complaining.  Nobody believed me anyway.

Just because I stopped talking about my discomfort does not mean it went away.

I still lived with constant headaches, nausea, and even physical pain – the more severe symptoms of my Sensory Processing Disorder. Before I would suffer, pretending everything was alright, smiling through the pain.

“You used to be such a positive person.”

Now that I advocate for myself and speak up with I am uncomfortable or not feeling well I am a “negative person”.

Why does this stigma still exist? I’m not trying to be negative, I’m sharing my world with you or asking for help.

Nobody wants to know how you are really feeling.

People have accused me of using my diagnosis to get out of things, but really the things I try to get away from now are things that have caused me pain my entire life.

People can be down right nasty when you try to paint Autism in a positive light. They feel as if you are dismissing their struggle, but I feel like there is already enough information on the internet talking about all the hardships and problems. If you don’t know where to look that is all you’ll find.

My diagnosis is a little paper that says “You’re not crazy – yes your body does have a mind of it’s own. Love yourself.” I chose not to get hung up on the negative and try to always focus on the positive.

“Anna is an exceptionally bright woman on the Autism Spectrum she suffers from [. . .] ” Let’s not worry about the list that comes next. I can’t live my life drowning in negativity.

I’m not a special snowflake. I am just a girl trying to live an authentic life while loving and accepting herself – Autism and all.

 

Learning to Say No – The Best Gift I Could Give Myself This Holiday Season

People don’t understand my limits when I feel too overwhelmed at the end of a long work week to go out on a Friday. They take things personally when I decline their invitations.

I used to get caught up in upsetting them. One one day, like a light bulb, I realized that I was not responsible for their feelings.

Taking on too many things is not good for my health. Social activities, although enjoyable, are very tiresome to me especially if they take place in a busy environment.

I may choose to stay in, but that doesn’t mean that I didn’t want to go out.

I’ve learned that limiting activities that drain my brain, especially during and around busy work weeks, is something that I have to do. If I don’t conserve my energy at home, I won’t have the energy to do my job.

My job can be stressful but it’s actually a very fun job and I enjoy it.

I always want to be fresh and ready to do my best at work. That means taking care of myself – mentally and physically, eating healthy, and getting plenty of rest. I need to be sharp in order to work.

I have to say “no” to people. Some people get tired of hearing “no” over and over.  I’ve lost friends over this. It sucks to loose friends but my health has to come first.

Why do our parents teach us that “no” is a dirty word?

I think “no” is a wonderfully empowering word. Learning to say “no” has set me free.

No – I won’t do it anymore – not if it’s not good for me.

Learning to say no was the best gift I could possibly give myself this holiday season. This year, I hope that I can somehow give this gift to you.

 

With love and thanks,

Anonymously Autistic

“Anna”

 

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.