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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.

 

 

 

Autistic Confessions – I Literally Don’t Know How to “Talk” About My Autism (but I CAN Write it)

It is beyond frustrating that every single time I try to talk to someone in a face to face conversation about Autism and how it applies to me I am unable to make a clear point. What drives me crazy is if I am alone in a room I can easily type something up. Does this happen to anyone else?

People being near me scatters my brain unless I can tune them out – even people I like but it is WORSE with strangers.

This doesn’t just happen with Autism it also happens to other topics that I could write books about. I try to explain something to someone and  can tell they are completely lost.  Asking if I can send them an email later will raise an eyebrow. What is an Aspie with verbal communication impairments to do?

Oh – tell my readers!

What IS this? Do you experience it?

 

With love and curiosity,

Anonymously Autistic

“Anna”

Oops – I’ve Lost Another Friend

Oops I’ve lost another friend

I thought that we were close

But you’ve got needs

that I can’t fill

You want more from me than I can give

I leave you feeling empty

You tell me friends hang out more

When my social anxiety gets the best of me

and I would cancel

at first you calmed to understand

Eventually you got tired of waiting

telling me you wanted more

I know now

and it breaks my heart

that I must let you go

Goodbye my friend of many years

My friend who cannot understand

I hate to see you go

and will miss you when you’re gone

but your no good for me

when you hurt me so

your words cut deep

we cannot repair

I’m afraid you’ve got to go

A poem about losing friends.

Being Autistic has made it more difficult for me to make friends. I don’t bond with everyone but deeply care about the friends I have. Loosing a friendship is like burying a friend.

It is a great and painful loss but if the relationship is not mutually beneficial than I can see no point.

I have Social Anxiety Disorder – sometimes I cancel plans but it doesn’t mean I did not want to hang out. My fiends feel unwanted and one by one most of them have drifted away.

People don’t understand and I can’t blame them for that – doesn’t mean it does not sting whenever it happens.

 

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.

Working Full Time (Is Killing Me) – Autism at Work

Now that I know the reason for my social impairments and shortcomings, I am more accepting of my own failures.

Before I knew I was Autistic, I remember crying alone wondering why I could not just figure out the nuances of conversation. Why even when I thought I was doing everything right to have a polite conversation, people told me I still spoke out of turn and repeated myself .

The way I relate to others is somehow of-putting. I tend to ramble and turn conversations back onto myself. People think I don’t care about what they have to say but really, I’m just trying to say – “I understand.”

In fact I am also much more aware of my own failures now – this was hard on my self esteem when I was first diagnosed. Suddenly all of my flaws were illuminated, in my face, and so official.

I realized that I could not read faces, realized how much I was struggling just for timing in conversations, realized that auditory processing delays make face to face interactions stressful and overstimulating.

I was pushing myself to the point of sickness trying to keep up with the social demands of my busy work place. The things that most people find rewarding, busy events and parties, are not fun to me. I don’t want to go out and drink and I don’t feel relaxed around my coworkers.

All that fun was not in the job description and it was taking a toll on me.

Happy hours, networking events, international travel, restaurant openings, celebrities, private screenings of movies that the public can’t see yet – my job is pretty amazing.

The truth is, I rather not have all the extra perks that my job “offers”. I’ve learned that the politics are complex and if you don’t attend certain things your boss feels like you are ungrateful. I try to attend the very minimum, but even that is pushing it for me.

I am surviving in energy conservation mode. I have no social life other than the one my office creates.

I’ve stopped hanging out with my real friends because at the end of the work week I am dead. I have no energy or desire to socialize, burnt up and spent, nothing left for the people who matter most to me.

But I am living the dream right? I have my dream job and it seems to be killing me.

I need more down time than most people, and the more social I am the more down time I need. It is hard for someone running on spoons to have a full time job, but quitting is never my option.

I have gratitude for my job, because TOO many Aspies are unemployed. I am thankful every day for my very difficult and exciting job – even on the worst days.

Autistic Confessions I Had a Meltdown at Work

The woman on the phone was not listening. I had called her for help and quickly realized that she would not be able to help me.

“I told her never-mind. I’ve made a mistake. I’m going to let you go.” She kept asking questions. Every question she asked I said – “I don’t know. I don’t have any more information. I am going to let you go.”

She kept asking. I told her again – “I need to let you go. You cannot help me.” Her overly helpful insistence that I not hang up the phone was about to make me blow up.

Finally, in a harsh tone I told her – “Look – I was trying to be nice but I am hanging up now because there is NOTHING you can do for me.”

I slammed down the phone and ran quickly out of our office in a panic. My heart was beating fast and my mind was racing. Everything was a blur. I wanted to scream, cry, and hit someone. More than anything I wanted to get away and be alone.

Run. Run. Escape. Escape.

Bursting into the hallway I frantically looked both ways – I wanted to go someplace without people. The bathroom? Elevator? Emergency stairwell! 

Hyperventilating I burst into the stairwell. It was dark and quiet as most people take the elevator. I rand up and down the stairs until finally I collapsed exhausted on the bottom floor.

I sat for a moment, curled in a ball rocking. Grateful for the moment alone – I sat breathing in and listening to my breaths.

Coming back to reality, feeling much better after my tiny explosion (this was a very small meltdown), I realized that I had left my key-card in the desk as I ran out in a panic, so I exited the stairwell and took the elevator back to my floor.

Back at my desk I sat down like nothing ever happened – as if I hadn’t just had a meltdown at work.

When an Autistic person is having a meltdown they are unable to think clearly. The flight or fight response is triggered so forcing them to engage with you can actually cause more stress.

We are all unique individuals but I like to be alone during a meltdown. If I get up and run away don’t chase me – this is flight and if you corner me my brain can switch to fight. I’m on autopilot and running has become the way I protect myself (and those around me).

If I’m having a meltdown please do not touch me. My senses are whirling out of proportion and I am not thinking clearly. I may become unable to communicate other than one word answers and trying to communicate makes me feel worse – so don’t ask me explain what’s happening.

If you are in the room with an Autistic person having a meltdown – turn off the lights, get them a blanket or pillow and some space. A favorite stim toy might also be a good thing to offer.

You can stay in the room if the person you are with does not mind, but give some space and sit quietly.  Accept that they can’t control what is happening to them. Sometimes we feel the meltdown coming but other times it hits without warning.

Once started the meltdown has to run its course. Just wait, let me meltdown and don’t try to stop it. We may feel tired after a meltdown but sometimes we may feel a relief as the pressure may have been building for quite sometime.

Remember – as hard as watching a meltdown may be for you having a meltdown is horrible for an Autistic person. The pain is mental and physical. Autistic people having meltdowns are in crisis mode and our brains are lashing out at us. We don’t mean to freak out and are often embarrassed after having a meltdown.

#ActuallyAutistic

“You’re Obsessed with Autism”

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

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

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

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

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

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

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

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

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

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

“You used to be such a positive person.”

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

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

Nobody wants to know how you are really feeling.

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

With love and thanks,

Anonymously Autistic

“Anna”

 

Remrov – Talks About the Spoon Analogy Regarding Energy

The Spoon Theory is an amazing way to explain the energy drain that many Autistic people feel. If I get too low in Spoons I get VERY sick so it is important for me to conserve my energy and avoid too many activities that take away the most spoons.

Some activities take more out of me than others, even enjoyable activities can be taxing on my spoon supply. Socializing and having a full time job uses almost all of my spoons most days. Sitting under florescent lights or being in a loud noisy environment slowly drains my spoons as well.

I limit my social activities and don’t get out on days that I go to work since these take up so much energy.

Also I need time to “regather my spoons”. After I get worn down it takes time to build my energy levels back up. It is extremely important that I have quiet time to recover or I can get stuck in a repeated meltdown / burnout loop.

World Mental Health Awareness – I Don’t Want Awareness (I Want Acceptance)

I have written my entire blog around the theme of being “Anonymous” because many Autistic people are invisible, unseen and anonymous in the world. Autism is an “invisible disability” meaning you can’t tell someone is Autistic unless you ask them (or know Autism VERY well and are paying close attention).

People have awareness of Autism – they know exists, they know that Autism is a popular conversation, and it’s prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).

People know that Autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that Autism exists and having acceptance of Autistic people are two very different things.

Today is World Mental Health Awareness day – but today I am NOT asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.

Accept me.

When I am staring at you blank faced because I did not understand what you just said. Give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.

Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.

I’m not Rain Man.

I shouldn’t even have to say it – but MOST Autistic people are NOTHING like Rain Man. Some of us have unique skills and abilities and some of us do not. No two Autistic people are the same and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.

Understand me.

Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on the spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you my brain is working hard and I am doing my best.

If I am not talking don’t take it personally. Sometimes, if I am worn down and if I am tired the words get stuck in my mind as if traveling through glue. By the time the words are ready they are no longer relevant.

Don’t underestimate me. 

I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world but I am NOT stupid. Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am a genius so being talked to like a child is EXTREMELY offensive.

There will be things I can not do from time to time and tasks that I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.

Stop asking me to blend in (and don’t compliment my ability to hide my Autism).

I can blend in if I have to, but passing is a LOT of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me and passing costs me about one spoon per hour. I need to save my spoons and  “passing” is too costly. (Please read The Spoon Theory written by Christine Miserandino if you have NO idea what I am talking about.)

This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted my all my life and eventually, when trying to blend in finally failed, I ended up with an Autism diagnosis.

Let me be me.

It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less Autistic” makes me feel as if the “real me” is not good enough. I won’t do it any more – nobody should have to feel ashamed of they way they were born.

Today, on Mental Health Awareness Day, more than anything I am putting out a deep wish for true acceptance. Being aware of “mental illness” is not enough. It is important that we accept people as they are.

#WorldMentalHealthDay #invisibledisability #Glitch #mentalhealth #iamwhole#WMHD