Tag Archives: Autism

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.

 

 

 

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.

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

My Meltdown – A Poem – Guest Blog

This poem comes from a long term reader, fellow blogger, and dear friend. I am honored to share with you a work by the one and only Allison M. Kramer of the Through 1 Filter  blog.

Thank you for sharing such an intimate moment. People need to understand meltdowns. These conversations are important.

 

My meltdown is

Echoed in my screaming
Adrenaline is racing like napalm through my veins
Moro reflex punching my gut over and over
Reliving the sensory overload on a loop

I’m drowning without being in water
and I have to go to bed for 2 days

Sometimes it brings red and blue flashing lights on a squad car 
Handcuffs chewing into my wrists
Lots of shouting and grabbing
Strapped to a backboard while my skin turns purple and black

Locked up, drugged up
Being punished for something I cannot control
It isn’t a conscience choice I’ve made
To disrupt my life or yours

It so happened that
A dog was barking-
A child was screaming-
Someone set off a firecracker-
And I couldn’t process the information fast enough
To remain in control of my executive functioning

The threat of sensory overload
hangs pregnant, like a cumulonimbus cloud

I need a safe place and safe people- now and until I die
To successfully process what life heaps upon me

Will you help me to make this a reality? I cannot do it alone, behind a computer detached from any notion of community. I don’t want my life story to end in a jail cell, nursing home or alley. 

 

Allison M. Kramer
Author:Through 1 Filter

 

 

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

Medical Cannabis & Autism – You Asked My Opinion (The Blog I’ve Been Avoiding)

Over the past year that I’ve had my blog people have been emailing asking for my opinion on the use of cannabis or marijuana as a possible treatment for Autism.

To be perfectly honest with you, all of my readers, I have been avoiding this topic.

Here is why – I don’t have first hand experience with this so I don’t feel like an authority on the subject. I don’t live in a state that allows Autism to be listed as a qualifying medical condition so this option is not available to me. I need to write about what I know and I don’t know enough about this.

What I would like to share is that parents have reached out to me to let me know that they have had some amazing results. Other parents email to ask if I know about this treatment but all I can say is this – I am not a doctor and cannot give medical advice.

So once again, I am not a doctor and can not give medical advice so please do not take anything I say as such.

If you want my opinion on medical marijuana and Autism all you have to do is search “cannabis autism” on YouTube.

Watch the videos, especially the ones with severely affected Autistic children.

If you can not stop crying while watching those videos than you know exactly my position on this issue.

I am deeply troubled that there might be people missing out on one thing that might help ease extreme suffering, especially when many drastic things have already been tried.

Those videos may hook you in and after that you may find yourself watching the videos about medical cannabis and seizures. I can’t watch these videos either because I know many children with severe seizure disorders, who are not helped by mainstream medications, die at a young age.

I am also saddened by medical refugees and people stuck without access.

I can’t watch these videos any more. The truth in them is so penetrating that it makes me physically ill. People say Autistic people don’t feel things but as an adult I feel them more deeply than a lot of people. It is beautiful and painful all at the same time.

That is my opinion on medical cannabis for Autism – I am heart broken.

Heart broken about all the suffering that’s happened over the years in relation to this plant for no good reason. People are sick, dying, in prison, families torn apart. There has to be a better answer.

Can I advocate for medical marijuana as an Autism treatment? I don’t know. I am not a scientist or a doctor.

What I can advocate is everyone doing their own independent research. There is still a lot we do not know about this plant. One thing I can say is it doesn’t seem to be as dangerous as people wanted us to believe back when they made it illegal.

I know cigarettes kill people and alcohol is much worse but is a big part of our culture.

Just facts. That’s all I’ve got since I can’t make this one more personal.

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

The Secret to Fighting Anxiety (Now!)

Life is hard and I have pretty intense chronic anxiety. Still I don’t let that stop me from doing what needs to be done.

It’s funny to me when people praise me, call me strong, brave, and all these other names. I’m literally just doing what I have to do. I have to push myself or my life would be in a bad place. Always pushing even when my anxiety is nagging ugly words in the back of my mind.

So what is the secret? How do I stop the anxiety from talking over?

I stop and I breathe. I close my eyes and breathe while focusing on the darkness. I may put ear plugs in or have head phones on while I do this. I block everything out and am alone with myself.

Safe in the darkness I ask myself – are you safe? What is happening right now? Is your worry something that hasn’t even happened yet? Then stop it. What’s happening now? 

I push forward but keep asking – What’s happening now? How about now? Now? Now? Now? Right now.

Sometimes I may repeat the word now over and over again in my head. It is a reminder to stay calm and that now everything is alright.

 

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”

Passing – Blending in For Survival – The Masks We Wear

I grew up undiagnosed so I learned to sit still and when to be quiet. I keep all speech and movements carefully planned like I am in a play. It’s an act I put on – hiding my Autism as a survival mechanism that I developed due to not knowing why I was different. It wasn’t that I was ashamed – although as I grew older bullies forced be to hide for my own safety.

At home with my parents and family all of my differences seemed normal and I was so “smart” that nothing could possible be said about anything else.

I’ve said before that Autism runs in families, even if some families never notice it. My family is pretty quirky, despite my Autism being obvious, at home blending in was easy.

When I was very little I had a very had time regulating and maintaining and indoor voice, my balance was not great, and as a toddler I preferred spinning objects over people.

In old videos of me adults are unable to get me to look away from my things when they call my name. I can hear – because in one clip a phone rings and the bell startles me to look about but I tune out all the humans begging for my attention.

As I grew older I had to go to school and my differences became more obvious to those outside of the home. In preschool I often asked for teachers to hug me – because I was anxious and craved the release of the squeezing pressure. Teachers thought it was strange that I ask people who were not family for hugs.

Everyone was nice to me up until about the first grade. It was then that I met my first bully – a strict old fashioned southern school teacher. I remember that she wanted me to sit still and tried to make me speak in front of the class. She didn’t give hugs and she wanted me, the disruption, out of her classroom.

I remember sitting on the floor in the hallway as my mother spoke to the adults inside the office. The conversation is not in my mind but I remember my mother being very angry when we left. Afterwords I remember her telling people “that child is not stupid”.

It was agreed that I would spend part of my day in a special education classroom.

Being labeled a special-ed kid brought about a whole new type of bully – other children. People who had always ignored me in the past now made efforts to scream names at me in the hallways. The children were mean and the adults had an attitude as if being picked on was just a part of life.

In my mind all of my troubles were linked to being in the special education class-room so I worked hard to get out of there. Unfortunately by the time I escaped the SPED room the damage was done. Names like “Retard” and “Short Buss” followed me until I moved to a new city years later.

All because I was shy and had a hard time sitting still. One teacher who didn’t want to deal with me caused so much trouble and pain.

I thought things would be better in my new school. Finally I was invisible again. Unfortunately I still ended up having several altercations with bullies over misunderstandings. Despite proving my intellect, my social skills were still very limited and they often got me into trouble.

We moved one more time before high school, this time after being in a play. I remember thinking – acting is so easy it’s what I do every day when I am around other people. I made a conscious effort to pick and create a character of myself for my new school – one who does not get bullied.

I studied and watched movies and real people. I taught myself to “wear a mask” in school and eventually at work. The character. She comes out whenever I need her but takes up a lot of my mental energy.

Passing is a survival mechanism. As an adult you are asked to do more and more things that require a “social mask”. If you don’t learn do adapt one life on your own can be difficult – unless you find people who are understanding of your differences.

Wearing the mask too often can lead to Autistic Burnout.

Unfortunately we live in a society that can be unkind to what it doesn’t understand. Social skills are valued and necessary but many Aspies, myself included, have a hard time with even the basics (such as timing in conversation).

We have misunderstandings and miscommunications. People think we are rude because they do not understand that these things are not natural to us. Even worse they are often upset when we get things wrong.

It is difficult for us to hold a job or make advancements in the workplace because we do not value social acceptance or do well with office politics. I personally understand them in a very mechanical way but try to keep my head down and let my work speak for itself.

As an adult blending in means happy hours and group outings to the new trendy spot in town – things that I can’t even pretend to enjoy. I am learning that blending in is no longer enjoyable, turning down all invitations to hang out with co-workers and sometimes friends.

Work socials are the worst for me. Any group larger than three people is not enjoyable, although I can push it to a group of four without losing my mind. Too many conversations at one time or in a loud space can lead to sensory overload and will send me home feeling like a zombie desperate for a hot bath and feeling empty.

The pressure to be “professional” is intense even in a relaxed setting. How do you do professional and relaxed at the same time? I don’t have that character in my Rolodex. This does not compute.

I’ve dreamed of a day when I will drop all of the masks completely however I realize most people, especially those in sales, have some sort of character they play. I don’t want to play a role, I want to be myself.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

All the world’s a stage
And all the men and women merely players
They have their exits and their entrances
And one man in his time plays many parts

- William Shakespeare, 1564 - 1616