Category Archives: Comorbids

Basic Accommodations – I’m Not Disabled By My Autism, I’m Disabled By Unaccommodating 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.

 

 

 

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.

 

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

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

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

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

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

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

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

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

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

 

A Poem About Sensory Overload / Sensory Meltdown

Squinting in the light

Ticking Clocks

The world is so bright

Everything hums

Shiny daylight fixtures

Killing me slowly

Eyes and brain aching

Stomach turns

I’m not faking

Sounds you can’t hear

Driving me crazy

Can’t tune it out

Can’t make it stop

I close my eyes and rock

Counting to ten

Breathing deeply

Desperately grasping

Trying to hold it in

Looking for a place to hide

The world is spinning

I can’t escape

Hot tears burst

My body burns

Nobody can help me

Let me be

Do not touch me

I need to breathe

Once started

This pain must run its course

Before I sleep

A poem inspired by Sensory Overload / Sensory Meltdowns / Autistic Meltdowns / Sensory Processing Disorder

Melissa McGlensey – The Mighty – 22 Truths People Affected by Sensory Processing Disorder Wish Others Understood

Melissa McGlensey wrights about Sensory Processing Disorder on The Mighty.

On a bad day, my sensory issues can be the worst part of my life. What makes it even harder is the fact that nobody, unless they have SPD, can possibly understand the pain and discomfort that I am going through when a full blown attack is happening.

People think I am being dramatic, whining, or complaining… so I keep things to myself. The truth is, some days I feel worse than others. Some days my symptoms go completely unnoticed but when they are bad they can not be ignored.

I can take ZERO credit for the following quotes. Please see the full article here on The Mighty.

“I do not complain about bright lights, smells, tastes, rough touch, etc., just to annoy others. I am overwhelmed by sensations and am learning how to process differently. Until then, please be patient with me.” — Sandra Cusack

“When I need to go reset, it’s not because I’m being dramatic. To be in a room of people is constant stress on my mind and body to make sense of an environment that makes simple sense to you. Sounds, smells, lights, brushes against people, all of it had to be decoded and reiterated into a language my brain can understand, and there can’t be more input when I’m trying to do that. I need a space free from all stimuli to give my brain the break it needs to process things… Just give me a minute to myself. And please don’t interrupt it.” — Hailey Remigio

“Just because I look fine on the outside doesn’t mean I’m not struggling inside… Even the professionals I take my kids to assume so much. They do things like talk to me in a crowded waiting room. They assume just because I’m an adult I’ve figured out how to handle my sensory issues. I didn’t know what SPD was for most of my life.” — Holly Newt

Meghan Scarfo of The Mighty – The Type of Sensory Overload I Find Enjoyable

There are definitely sometimes where my finely tuned senses can be enjoyable and even a strength. For those times when I am not sick – I can definitely relate to a lot of what Meghan Scarfo, writer for The Mighty, has to say about the positive side of Sensory Processing Disorder.

I can take NO credit for the any of the information below. Please be sure to check out the full post here on The Mighty.

You see, sensory overload isn’t always a negative experience for me. My special relationships — which are few and far between — have the ability to cause profound sensory overload. It’s an aura that’s difficult to explain. The sensations I feel are overwhelming and heartwarming at the same time.

[…]

Neurotypical people may find these sensations difficult to understand. I have a hard time explaining it myself. A simple message, phone call or hug from the person with whom I feel this way produces a response that makes time stand still. It’s an overpowering tingling sensation or warmth coupled with heart palpitations. A truly unexplainable experience. The moment may be brief or long-lasting, but it’s very intense.

This type of sensory overload is extremely powerful, yet enjoyable. Caught in a daze or a “fog” so to speak, everything pauses around you for that moment.

I’d like to think of this sense as a gift. It’s an ability to connect with someone on such a level that is unheard of.

 

 

Amythest Schaber – Ask an Autistic – What is Autistic Burnout?

I am having some difficulties and may need to scale back on my actives. I had even asked myself the question – Am I becoming MORE Autistic?

Could it be that new responsibilities and a change in routine are to blame?

One of my favorite Autistic bloggers, Amythest Schaber, talks about Autistic Burnout in the YouTube video below. Although I LOVE her content I can take NO credit for it. Please follow Amythest on YouTube.

Autism is not my disability.

Autism is not my disability, altough I truly believe that it is the root of all my “superpowers”.

My disability is invisible because I am able to blend in with society. People don’t know if I am suffering. When I speak up asking for help I am told that I am not “Autistic enough”.

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.

Cure culture says erase the Autism. Neurodiversity begs you treat us with compassion, learn about us, and accept us as we are.

Autistic children are sent to therapy to help them look “less Autistic”. They learn to be still, and learn how different they are from everyone else.

We become self-conscious and learn that our differences are something to be ashamed of.

So no, I am not disabled. Society has unrealistic expectations.

 

Autistic Confessions – I Avoid People

I will do my best to only get on an empty elevator and will take the stairs if there are too many people around so I can enjoy a moment of quiet. I actually enjoy exercise so stairs are often a welcome escape.

When my doorbell rings, my first instinct is always to hide. Then I creep to the door looking for the peep hole. If the person outside is not friend or family nothing can get me to answer. I hate being interrupted by unannounced people at my home, but friends and family are always welcome – it is my sanctuary.

I will never leave the bathroom stall if there is someone else inside the restroom. I will listen and wait to leave the stall until after I am sure the room is totally empty.

When wandering in public I sometimes stare down at my phone, or feet. Sometimes I allow my inner child to surface and I let my eyes dart around wildly, taking in every color and texture before me.

When I indulge in this way, I assume I must look my most Autistic. Joy overflowing as I bounce around and wave my hands excitedly. I’ve been told there is a child like joy in me, despite being almost thirty… my husband brings it out in me. We laugh, we enjoy nature, we have fun on our own, blissful in our private world.

Social situations and encounters with strangers are draining to me. I don’t take any pleasure in small talk, smiles, or eye contact with people I don’t know. In fact – every time I make eye contact with someone I don’t know or trust my heart races as my adrenal gland fires off. It is an unpleasant sensation that I can tolerate but avoid when I can.

Its not that I don’t want to be friendly to other people or to push people away. I am conserving energy so that what I have left I can enjoy with the people I love.

So yes – Autistic Confession – I avoid people, because for me that is self care.

What Does Autism Feel Like?

I was having a deep conversation (via Google Hangouts instant messenger) with a close friend about my Autism. He made a comment that he did not see Autism as a disability, but more as an alternate way of thinking that is not serviced very wall by the modern education system. I agree – partially. . .

Quickly I realized that no matter how hard I tried, there was no way I could accurately explain or convey the parts of my Autism that truly “disable” me. Searching the internet, I quickly found a few articles with other Aspie who had attempted to explain what I currently could not – the negative things that NT’s have a hard time comprehending.

“What does Autism feel like?” In that moment I was completely unable to explain.

The most disabling part of Autism (for me) may be its invisibility and my status as “high functioning”. Everyone expects me to do ok. I am smart, and use my ability to pick up on patterns to get ahead in the world. I am one of those “gifted” Aspies so my Autism must be a gift right?

My good days are amazing but on my worst days my sensory overload wont let me out of bed. Currently I am averaging about three really bad days a month. They hit at random stop my world in its tracks.

People can’t tell when I am having sensory problems. Some days are worse than others and most days I am in at least mild pain at all times. The lights hurt my eyes and head, smells make me gag, small sounds nag at me constantly, I walk into walls, trip over things, and sometimes miss my mouth when I eat.

I miss many things in most conversations. I am awkward, weird, and my intentions are often misunderstood. If someone is not smiling or looking pissed off I can’t read them – unless I know them very well. Normally I have NO clue when I’ve offended someone.

Autism feels like I am out of sync with the world and its people. I am alone in a lot of ways, that may sound sad but honestly I am happiest when I am alone with my own thoughts.

Below are some of the items I found while researching how to better explain Sensory Overload.

 I can take NO credit for anything below.

My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.

Lori Sealy of The Mighty shares – My Answer to the Question ‘What Does Autism Feel Like?’ talking about her sensory processing difficulties.

One Guy’s Opinion: What it feels like to have autism as an adult by by

In general…

  • Before you know you have it, you simply assume that you have an odd personality.
  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.. .

Check out full article here.

Video Simulations to Help You Experience Sensory Overload

 

Carly’s Café – Experience Autism Through Carly’s Eyes

Carly Fleischmann is a nonverbal Autism advocate and YouTube talk show host. She is AMAZING. I strongly recommend you check her out.

Video HERE.

What it’s like to walk down a street when you have autism or an ASD

More great videos on Craig Thomson‘s YouTube channel.

Video HERE.

Autism: Sensory Overload Simulation

Check out the streamofawareness YouTube channel for more.

Video HERE.

Sensory Overload Simulation

More from WeirdGirlCyndi on YouTube.

Video HERE.