Tag Archives: disability

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.

 

 

 

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.

 

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.

Meltdowns Suck, I Hate Crying In Public, & No I Can’t Turn it Off

My mental profile is SO spiky. I am extremely gifted at a few things but certain things I can’t handle.

Last minute schedule changes  stress me out. Meltdowns are the worst and  having one in public is embarrassing as hell. A woman in her mid-thirties crying like a child.  I hide and cry. This also happens anytime someone I trust misleads me (because I trust few people).

Sometimes if the schedule change is big enough I will go into a full blown panic. It is worse if I feel like I am trapped and can’t say no – I feel like I am drowning every time this happens. I know how to recover from them but they are not under my control.

My meltdown is NOT a tantrum – it is a very true expression of inner feelings that I can no longer contain. The dam has broken and a flood is imminent. Everything I’ve been holding in has got to come out.

People think I am being dramatic or exaggerating things but I literally can’t stop a meltdown. In addition the thing that I am reacting to may seem very small to them. They don’t see things from my perspective or know all the other factors that went into building that meltdown.

Maybe someone I love just passed away, or I am feeling sick, maybe I am having horrible PMS, or trouble sleeping, sometimes my social anxiety gets out of control.

These are the disabling things I don’t talk about.

I tend to bottle everything up, which can’t be healthy, and eventually like a can of frozen soda – when the pressure becomes too great, I POP! I’ve done this all my life.

It’s too late once a meltdown has started, they have to run their course – sometimes if I get away fast enough I can help one pass more quickly.

While meltdowns are physically and mentally painful and I NEVER want to have one, sometimes the relief felt after one is amazing especially if you’ve been under extra stress.

I always feel worn out afterwards, like someone who has had a seizure, or an orgasm. Sometimes I feel naked and exposed meltdowns make you feel vulnerable and out of control.

Please be compassionate next time you see a thirty-something woman crying in public, you don’t know what she’s got going on.

She might be autistic, she might be stressed, she might even be me. 😉

 

What Causes Autism? Brain Injury?

It’s genetic – Looking around at my closest male and female relatives, Autistic traits can be noticed in all of them. My autism was obvious from childhood. I have video footage starting the day I came home from the hospital through my teenage years. It is clear to me that in my own case – Autism is genetic.

I recently have been reading more and more information online suggesting that autistic children may have weakened blood brain barriers and be more supportable to brain injuries.

Someone else, who I’ve known for years, has an Autistic son. He suffered a sudden mystery illness after being vaccinated and never recovered. The child has compromised mental function and appears to have had a negative reaction to the vaccine.

Regarding the case above – I know the extended family of the woman and the boy very well, and they are much like my own family little traces of Autistic tendencies everywhere.

My personal feelings regarding what happened to the boy are different from his mother’s.

She feels his Autism was caused entirely by the vaccine and I strongly believe the tendencies for Autism would have eventually been discovered regardless.

She claims there were no signs of Autism before her son came down with the sudden illness – and I have to believe that she is telling the truth as she sees it.

I can’t help but  see autism in the mother, the grandmother, and the uncles who I also know well.

I have a theory that Autistic kids are more susceptible to chemical brain injury – I would LOVE for science to catch up and prove me right. The illnesses that accompany Autism are the problem – not the Autism itself. Our immune systems are weakened and we need to be protected. We are fragile flowers.

We are still trying to answer what causes Autism, it might be a while before we find all the answers.

For now I will quote Autism Speaks – a polarizing organization that has not yet gained my trust (but changing their mission statement earlier this fall was a start) – on what science has to say.

 

What Causes Autism?

Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

Autism Speaks – full article here.

 

 

 

Autistic Confessions – I Can’t Follow (Spoken) Directions

I can’t follow verbal instructions – unless you give me each item one step at a time.

Spoken words are often misheard due to sensory issues so it is easy for me to misunderstand verbal directions.

If you start to give me a list of things to do and I can’t find a notepad I may start to panic.

If we are out in public and you tell me I need to remember to do something later – it probably won’t happen.

My working memory is not great and I have to make checklists and keep a calendar to stay organized.

If I am trying to hold information in my brain (by saying the thing over and over again in my head) and someone interrupts me mid task the information is lost forever – even if it’s something simple like a first and last name.

Typed or written instructions are best for me, this allows me time to translate the task into my own way of thinking – which is primarily visual.

Also, because I tend to take things very literally, this allows me time to question if my assumptions about the instructions make since – preventing embarrassing mistakes.

Please don’t tell me what you need me to do – unless you know I’m ready to write things down. I hate letting people down but I REALLY can’t follow spoken directions