Tag Archives: disability

How Could the World Be More Autism Friendly

Those who know me, and the readers who’ve followed long enough, are well aware that I like to focus on the positive. My last post was not the happiest because life has been hard and it is wearing on me.

We’ve been having conversations in the comments on this site and on Twitter. Talking about all of the problems and hardships Autistic people face in the world. In general I feel like focusing on your problems all the time can be a very dangerous thing. Shifting our attention to solutions tends to be much more effective.

Today I would like to write about my dream world – a world that is more friendly to Autistic people. Maybe some day, long after I am gone, it will be a reality.

It is a beautiful place, where there are always quiet spaces to get away when you need a private moment.  Every light switch has control for the light level and temperature, because everyone’s brain needs different lighting. (I like red-ish light and can not handle bright white, blue, or green). Natural light is used whenever possible and working from home is always an option.

In the place of my dreams you are always aloud to carry a laptop for notes, people don’t mind sending instructions via email, or handing everything over in writing. People wouldn’t call last minute meetings and would stop insisting on phone calls when an email is a perfectly acceptable form of communication.

Work schedules would be more predictable and people would not ask you to stay late for extra tasks at the last minute. (I just need to know when something is over – so I can conserve the perfect amount of energy.) Shifts could start at the same time every day and end at the same time every day (when you have insomnia one night working till midnight can throw off your entire week when you normally wake up early.)

Job descriptions would be more accurate so it is easier for us to determine in advance if we are qualified for a task. Employees would have input when job descriptions change and would be able to turn down new tasks that don’t suit their natural abilities.

Multitasking is a word that would disappear in my new world. Focusing on one thing at a time and doing it perfectly is far more efficient than doing several things at a time half-assed and in a rush. People would stop rushing you, and asking “can you multitask” in interviews – since most people don’t truly multitask very well even without Autism (even when they THINK they do).

Windows in large buildings could actually be opened so fresh air could be allowed in. Offices would have space for people who get cold easy and people who get hot easy so everyone could be comfortable.

Regular breaks would be encouraged and standing desks and exercise ball chairs would be more widely available so people don’t have to sit stagnate all day. Employers would stop valuing their employees based on how many hours a week they work and would focus more on dedication the quality of work turned in.

Office politics would disappear and work ethic would have more value than who’s ass you kiss. “Optional” work functions would really be optional (meaning your boss would never make comments like – “You weren’t at the last 3 office happy hours.” If something is necessary for a job it would be explicit not implied. If the happy hours are mandatory they should just say so.

Most importantly in this perfect new world everyone understands and accepts Autistic people. We don’t have to depend on unhealthy coping mechanisms like “passing”. Nobody expects us to act like everyone else.

It is a dream I have, a magical world. Some day I hope the world becomes more Autism friendly.

Autism Level 1: “Requiring support” – What Support?

Doctors and medical professionals are trying to nail down and better categorize Autism. The latest grouping places the entire spectrum into three buckets, depending on the level of support required for the person to function normally in society.

I fall in to the Autism Level 1: “Requiring support” category.

Level 1: “Requiring support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Making Sense of the Three Levels of Autism – verywell

So they give me this label and throw me back out into the world, ironically without support. Now what? I am supposed to have this key that allows me to ask for things. My doctor tells me I have protected rights.

At first I am excited, finally I might be able to be more comfortable in my surroundings. I can ask for things and there is a reason besides me being difficult or high maintenance. Finally validated, yes those burning lights DO cause your migraines and avoiding them would be good for you.

What next? Asking for supports turned out to be more difficult than I thought it would be.

This category does not do my life experiences justice. On many levels I can surpass my NT peers but on a social level I often fail. When I put on my masks I can play these amazing characters who are social and confident – but being this person, who they want me to be, kills me. I can do her I can “be normal” but summoning the strength leaves me empty and ill.

Holding up this mask is a necessary evil from time to time, she gets me through my work days and the hard times. She is a character, someone I wish I could be – someone I am forced to be when backed into a corner.

Because of my mask I have peers in both groups, but the NT’s have never felt like peers. Watching, and observing them, trying to memorize their pasterns and mannerisms. Hoping to decode their intentions and feelings. Even reading their faces is difficult for me.

People don’t want to give me support because “I CAN be normal.” I am capable of acting like there is “nothing wrong with me”. (Quotes representing their words NOT mine.)

I can hide my pain, panic, and discomfort, manage to hold myself together just long enough to flee from the public eye. I always do – but I still have sensory issues and meltdowns like many of my ASD peers.

I need regularity and a predictable schedule, I need natural light and calm conditions or my overactive amygdala goes crazy and I get anxiety related illnesses. In my mind I am strong enough to do anything but my body and nerves won’t let me push myself as hard as I used to.

As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow. My Autism becomes more and more invisible, despite the disruptive symptoms, growing more intense.

I need help and supports more than ever but asking for them never goes well. Most people don’t believe I’m Autistic, and those who do say “but it’s  not that bad, you are normal.”

Employers don’t understand, they say things like “You only have to deal with florescent lighting three out of the five days a week you work – if you were here more maybe we could give you a window.” “You can’t wear earplugs today, we need you to answer the phones because nobody else is available.” For a job that was originally going to be FULLY REMOTE.

It always comes out like I am being unreasonable, picky, or difficult. At least that is how the opposition to my requests tend to spin things.

My accommodations are simple, let me type vs hand write, don’t give me spoken directions, let me sit in a quiet space (or wear earplugs) with natural light. Don’t ask me to stay late at the last minute if you can avoid it – if you know I may need to stay late tell me in advance. Most importantly please don’t make me go outside when it is cold. I have EXTREME cold sensitivity.

These are the accommodations that I’ve requested from my job – these are the supports that I would like to have because I feel like they are reasonable accommodations, and should be protected under the ADA.

The only support I get is a laptop – because it belongs to me and is essential to do my job (everyone at my work gets this so it’s not really a support). I can take notes on it, keep track of my schedule with it.

It is AMAZING that I get to work remote a couple of days a week. I am happy to have these things but the other items are important to me too and I haven’t been able to get any of them – not even the last one which always leads to meltdown.

Maybe I don’t complain enough. Nobody sees me on my worst days, when I am really struggling because I am PHYSICALLY ill from the stress of the environment and can not leave my house.

I “require supports” but it doesn’t mean I can get them. After all I’m (not always by choice) Anonymously Autistic.

Some days I feel like I am falling apart – if I stay in this world too long it may end me. Nobody can take care of me, I have to keep working.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

I Worry About Autistic Children – Trouble in the School System

I was extremely fortunate in life, born into a large family who loved me greatly. Every one of them wanted to see me succeed. They pushed me and taught me things. My grandparents made sure I had good manners and my aunts and uncles taught me art and music. Cousins and family was fun but teachers and school was very difficult.

At home I felt confident and competent, this was always crushed when I went to school. My individuality was not cherished and teachers said I was too much of a distraction to stay in class. Eventually when I learned to sit still (which even now is hard on me) I was allowed to return to class with my peers.

They were strict and it was hard but in the end I had to want to go back to the regular class room so I would be motivated to sit still. Autistic people can do very well if they are motivated but our motivations my not make sense to others.

I’ve learned to use my own motivations as rewards for good work. I tell myself “if you do this now you can have a reward at the end”. Sometimes the reward may be a stretch or stim break, it could be a cup of coffee, or a snack. I need to be motivated and as an adult I have to motivate myself to create good habits.

It’s not much different than what I would do for my dog when helping him learn new habits. All creatures love rewards and I love my dog. I want to help grow good habits so my dog can have a happy life – we just both happen to love treats.

Teachers who punish, call out flaws, and ostracize children who are different were some of my biggest adversaries in school growing up. They didn’t know what to do with me back then. I was “smart and dumb at the same time”. Teachers also called me lazy. There were no accommodations for me growing up, I had to learn to blend in or get kicked out of school.

Fast forward thirty years and parents advocating for their own children often struggle to get reasonable accommodations for their children in the public school system. Schools want to offer many Autistic kids a minimal education and with our current political situation I worry things may get much worse.

Many great historical thinkers had trouble in school growing up. Imagine if they encountered a system that told them they were not worth teaching. What if nobody had taken the time to help them learn and grow?

Everybody deserves the chance to learn and grow. We need to make sure Autistic children do not get shut out of an education just because they have a different way of experiencing the world.

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

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.

 

 

 

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

I’m Tired of People Talking For Me

My entire life people have been talking for me. As a child who could not express her emotions well – my mother often narrated how I was feeling and perceiving things (incorrectly) to the world.

She would make assumptions about the reasons I did the strange things I did and tell people these things as if they were facts – often times in front of me. Eventually I started to believe some of what my mother said about me even when it was not true.

Certain misunderstandings always bothered me, and many things were never worth correcting but now as an adult I am done letting other people speak for me.

I am done letting non-Autistic people tell me how I am feeling. I am done letting letting doctors pathologize me. I’m done letting other people explain my behavior.

This is me speaking for myself – a proud Autistic woman speaking with her voice through a keyboard, finally feeling understood for the first time in her life. These words don’t come easily from my mouth but here every intention is organized and clear.

After years of letting others talk for me, finally I am speaking up. I have so much to say that words pour out of me like water from a broken fish tank. The flood gates are open.

I’m tired of letting people talk for me – I’m perfectly capable of speaking for myself spreading Autism awareness (in my own way).

Trying to Explain Autistic Adults at the Dentist – We Blend In Better Than Autistic Children

I had a dental appointment this morning, a semiannual cleaning that takes a lot out of me due to my sensory sensitivities.

Up until this point I’d never fully disclosed my Autism to my dentist or the hygienist who cleans my mouth. In the past I’ve mentioned light sensitivities, high pain tolerances, and poor body temperature regulation (partial disclosure) but never used the word Autism.

Today, because part of my new years mission is to spread more Autism awareness, I told my secret.

I should be used to the responses people give my by now, but for some reason they always catch me off guard – “I never would have guessed. We have Autism in our family – nephews (young people). You hide it well.”

Even more I hated myself for my response to the comment. All I could think to say as I stood dumbfounded was “thank you” and I hated myself for even speaking those words.

My Autism is not something that I want to hide. I am not ashamed of being Autistic because I know that Autism makes me who I am.

I continued to share that “as I’ve grown up there are tricks that I’ve picked up along the way, allowing me to blend in and more easily manage in society. I have worked very hard to get to where I am now.”

In my mind we shared some understanding in that moment. I like to think that I was not dismissed as misdiagnosed or lying because often people don’t believe me when I tell them I’m Autistic.

There was so much more that I wanted to tell – how I meditate constantly and practice mindfulness to keep my anxiety under control. I wanted to share that me passing is a lot of work.

So much to say when you have metal tools in your mouth. There was no good time for further elaboration but I hoped for understanding of how hard it was for me to sit still while they probed around in my mouth.

Finally, as an adult, I am able to force myself (with great mental effort) to sit still through the entire dental cleaning.

At first glance it may appear as if I am calm and still but the reality is something far different.

My heart is racing and my hearing is fuzzy. As I lay flat on the dental chair my body is tense and I am pressing myself down with every muscle in my body, attempting to melt into the chair so I do not run away.

I wear sunglasses to block out the light and ear plugs to dampen the drills but still the excessive unpleasant physical contact is an assault to my senses.

Somehow I always manage to push through these draining experiences.

By the time I get home my head is pounding and my mind is fuzzy.

It is still very difficult but now as an Autistic adult I am finally able to get through an ordeal that was nearly intolerable as an Autistic child.

I am grateful for the small accomplishments. Learning to sit still while people touch me took  years of practice, determination, and hard work.

 

#ActuallyAutistic #SheCantBeAutistic #AnonymouslyAutistic #InvisibleAutism #InvisibleDisability

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.