Tag Archives: invisible disability

My Mind Plays Tricks On Me

Our minds are always playing tricks on us.

My mind plays tricks on me.

I get stuck cleaning the house.

Sometimes I can’t stop as I must reach every single corner.

I spend so much time cleaning

that I normally only have one or two clean rooms at a time.

My brain second (3rd and 4th) guesses everything I do.

Did I water the dog?

Did I lock the door?

Did I grab my phone (as I’m holding it my hand).

I constantly find myself turning off the inner monologue.

Sometimes I do forget things

because I refuse

to listen to the nagging.

It’s a trap waiting to suck me in and I can’t let it.

Always forcing myself to think about other things.

Sing along to the song on the radio.

Put on an audio book.

Do something.

Stop.

My brain is funny.

It can also play pleasant tricks on me.

I have joy when I am fortunate enough to have my lucky number.

Even if I know there is nothing special about numbers.

Technically they don’t even exist.

My brain craves perfection,

out of reach and

impossible.

My mind is extremely logical.

I call bull shit on myself all the time.

When I am careful and pay attention the patterns are obvious.

Some thoughts are irrational and silly.

With my little rituals,

I am safe.

Autistic Confessions – I Just Want to Be Alone – The Stigma of Solitude

I love being alone. In fact, like most introverts, I need to be alone in order to recharge my batteries.

The difference between me and most introverts is that they still “need” or “crave” social activities and being around other people. I simply don’t and never have.

Always alone, when I was young and through my teen years (and even part of my adult-hood) people made me feel like my tendency towards solitude was pathological. I remember my parents and grandparents trying to force me to go out with friends / leave the house.

They forced e so hard, insisting that I make friends or be lonely, but I had almost no friends.

I’ve always had a pattern of only having one friend at a time and hanging out in groups has never been fun for me. Having more than one or two friends is still very difficult for me.

Your whole life people tell you you will be lonely if you don’t have friends but I feel most alone when I am around the wrong people or even worse too many people. I never feel alone when I am on my own working on something I am passionate about.

To be perfectly honest sometimes I feel more affection towards my projects than for most people. I am very task driven and calculated. People often take my seriousness for coldness. The few who know me well know me as funny and warm.

One on one interactions are great if they are with the right person.  I can even do groups of up to three people if I keep the interactions short. More people needs to equal a shorter interaction for me.

Also, I am not opposed to meaningful conversations. The minute people start talking about pop culture and other mindless garbage my mind wanders. I am off in my own head until something brings me back to reality.

Neurotypicals or “normal people” take for granted things that are a LOT of work for me. Simple things, like figuring out when it’s your turn to talk. Despite focusing almost ALL my brain power on timing in conversations STILL I manage to mess this up every time.

Even when I am having a great time being social, my brain wears down fast when I have to focus on conversations. It is real work for me. The more conversations and the more people at a gathering the faster I drain out.

I’ve heard the clever term social hangover. For me this is a very accurate description.

By the time I am done with a 2 hour hangout with 4 people I am feeling dead and drained. It takes me a full day to recover from most social interactions. Add more people or more hours and I need even more time to recharge.

I can only handle one or two of these a month or I start to have an increased frequency of indigestion and meltdowns.

When my job started having one or two social things a month I stopped hanging out with the few friends I had. The truth is now all my social energy is spent on coworkers who I don’t relate to – because I am trying my hardest to “play the game.”

I turn down as many office happy hours as I can, but still feel like I don’t attend as many as they want me to.

Social politics in the work place are hard on us Aspies but we can’t escape them. If we want to succeed in an office we have to learn the patterns and unspoken rules (I hate unspoken rules – I like CLEAR rules).

If we can’t figure out the mysteries of the office we have to make our own way somehow or risk being stuck in a career that doesn’t fulfill. We are often under paid and under appreciated in the work place because we don’t kiss ass and “play the games” that our neurotypical peers do.

Without these skills we are at a disadvantage. There is pressure to fit in.

My hyper-social coworkers who like to go out several nights a week think being out and social is normal but for me a night at home is more acceptable. I am “antisocial” a “recluse” “book worm” and “introvert”. So many titles.

Why does wanting to stay in even need a title? Why does society shun the loner? There is nothing wrong with me wanting to spend most of my time alone. If I am truly happy what is the problem?

Its time we break the stigma on solitude.

 

#ActuallyAutistic #SheCantBeAutistic #AnonymouslyAutistic #InvisibleAutism

My Meltdown – A Poem – Guest Blog

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

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

 

My meltdown is

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

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

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

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

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

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

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

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

 

Allison M. Kramer
Author:Through 1 Filter

 

 

Passing – Blending in For Survival – The Masks We Wear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wearing the mask too often can lead to Autistic Burnout.

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

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

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

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

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

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

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

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

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

- William Shakespeare, 1564 - 1616

I Want to Encourage Everyone to Write

Writing is therapy and can be a key to better self understanding. We all have stories to tell and lessons learned. When we share we give others the opportunity to learn.

Write – even if you never share your world with anyone.

Pour your soul out onto the pages (digital or hand written). Let your thoughts come to life. Often I am surprised at what comes out when I am behind a keyboard. There is a flow when I am comfortable and relaxed.

In face to face interactions I am not nearly as eloquent. Sometimes I am just struggling to keep pace with a conversation – my brain tends to save information to process later. This is inefficient when speaking to people. By the time I am ready to contribute often the topic has already been changed.

My social differences are often misunderstood by my peers. I don’t need to look at people when they are talking to me – and listen best if I don’t try to. People often think I am rude, daydreaming, or not paying attention. They don’t understand that my brain works differently.

I started this blog out of frustration. When everywhere I go everyone misunderstands or underestimates me. If I tell people I am Autistic they say things like “you seem to have grown out of it” or “you don’t seem autistic”.

The picture they have of Autism is one that was sold in movies and on the internet.

It is a boy who cannot speak, an adult who may never live on their own, or someone who bangs their head against walls (I do this but not hard enough to hurt much).

An attractive woman who appears to have it all together is NOT what they imagine when you say “Autism” and they can’t easily adjust the pictures in their minds.

Neurotypicals tend to have more of a “hive mind” than Aspies do. They tend to follow popular opinions and are often hesitant to stray from what is considered “common knowledge”.

I can only see one fix for this problem – change what is “common knowledge”.

Aspies are wired to be individuals we don’t care about what others think – unless we are taught to care what others think (then we can become overly eager to please). We tend to be very analytical – sometime to the point of over analyzing.

Many of us thrive in solitude and are often accused of being “antisocial” and other negative terms.

People have a hard time accepting what they don’t understand. That is why it is so important that we all share our stories. Everyone has a story to tell.

Do something with yours – even if it is all you’ve got. Maybe you will change the world.

 

#SheCantBeAutistic #ActuallyAutistic #AnonymouslyAutistic #InvisibleAutism

Autistic Women – Why Are We Invisible?

Chameleon woman – I’ve been doing it since puberty. Logically the next evolution for a “Parrot Child” is a chameleon – right?

When many of us were younger it was thought that Autism was only found in boys. A gender stereotype that is still hurting us today. Some of us are missed completely or misdiagnosed with other conditions. Some go to the grave without knowing they are Autistic.

A few of us are lucky and eventually figure it out. When we discover the truth it is as if a light bulb has gone off. Growing up we felt alien but did not know why. Most days I thought everyone around me was crazy – having no idea how different our perspectives were.

They teach you to be a lady, have manners and be polite. Flailing about and acting crazy is very unbecoming of a young girl. We learn to hold things in. We read books and create art. We collect pretty things in our rooms, locking away our feelings.

Social pressure is huge on young women. Society expects you to be a certain way.

Over the years I’ve learned to fake it but learning to play “normal” has taken years of practice, constant trials and errors. It is still a character that tires me out and requires a lot of work.

Girls are pressured from a very young age and perhaps “boys will be boys” could be one reason Autism is more obvious in males than in females.

I was a tom-boy and my Autism was obvious until I hit puberty and became more aware of the ways I differed from my peers. At that point I made a conscious decision to study my peers and fit in. It was a bit like a science experiment.

The more I worked on this project the less I felt like myself. For the first time in my life nobody was bullying me. I was happy to feel safe and kept up the act through high school.

After years of being fake it was hard to even know who I was any more. I felt ugly and dirty. It’s hard to explain but just thinking about how fake I was (years ago) makes my face pucker. I don’t like that person and I pity her.

I’ve recovered from that but diagnosis was a major part of my recovery. It explained so much and everything. There were always little things that I’d never listed but if I did they would all say – Autism.

All the pieces of me that I hid from the world, the strange things – Autism.

Chameleon woman.  Invisible Autism. Anonymously Autistic. Nobody sees me struggling.

 

#SheCantBeAutistic #InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic

 

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. 😉

 

Coming Out Autistic – When You Don’t Believe

Coming out Autistic is hard. It’s even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like –

“Why are you complaining all of the sudden? You never used to talk about Autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.” 

 

These people are less than half right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people nobody believed me – so I stopped.

When I was in school I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick to. The doctors told my mother that there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up so I spent my life sick, in pain and discomfort.

My mother told me I had to go to school or she would go to jail, not wanting to loose my mother, I sucked it up and went.

Side note – remember Aspies take things literally. Be very careful what you say to your children.

 

I suffered in silence for thirty years.

I’ve always been different, but my mother told me never to reveal your flaws – so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard, was what eventually lead me to an Autistic Burnout (Autistic Regression).

Finally as my sensory symptoms intensified, after years of confusion and being told that “everything was in my head”, at the age of 30, I received a formal Autism diagnosis.

Am I happy to have a disability?

No. I was chronically ill my entire life and everyone always told me I was faking it. I am happy that FINALLY a doctor has an answer for me. After years of searching I know WHY I am always sick.  I am happy that I finally have the answers and information needed to take care of myself.

I am happy to know that my “illness” is not something more serious or terminal. Part of me used to think that I might have some sort of cancer or rare disease that might kill me some day. This thought is gone now.

They are also correct about my obsession with Autism being recent. 

I was Anonymously Autistic for thirty years and didn’t even know it.

I never spoke about Autism before learning about Autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero) I didn’t know what Autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about Autism.

Here is where people always get things wrong. 

I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger. 

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain”.

I am reminded of my mother’s words – “You’re not dying – get up!”

They don’t know about the secret headaches and physical pain caused by certain sensory experiences – if I try to tell them they accuse me of complaining or exaggerating.

I’ve been getting up and acting like everything is okay for a long time now. It’s tiresome but apparently I’m so good at passing that even some of my closest friends can’t see (and refuse to believe in) my Autism.

It hurts that they think I am lying or crazy, but I try to remind myself that they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been very supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Coming out Autistic is hard for a multitude of reasons – people don’t believe you, people don’t know what Autism is, people think Autism can be cured, people think Autism only affects children, the list goes on and on.

Hands down the worst thing about coming out is when you try to come out to someone close to you and they basically tell you – “No, you’re making this up. There is nothing wrong with you.”

Cut down like a tree.

When you don’t believe it hurts so bad that I want to stop sharing but I can’t because the world needs to know – for all the other Anonymously Autistic people in the world.

#AnonymouslyAutistic #ActuallyAutistic #SheCantBeAutistic

 

 

Autistic Genius – Equity NOT Equatlity

Asking for accommodation can be difficult.

I struggle with this personally because of my difficulty verbalizing things regarding my needs in face to face conversations. If I am asking for an accommodation, than I am probably already fairly uncomfortable.

If I am able to explain what I need PLEASE just take my word for it even if you don’t understand the reason behind my request. When people have too many questions about why I need what I need or treat me with skepticism I tend freeze up.

I don’t want special treatment, I just want to be as comfortable as I can be in a world that really was not built for me.

I really enjoy the videos from Autistic Genius on YouTube. Please check out his channel and subscribe for  more great content. I can take NO credit for the video below.