Tag Archives: Stigma

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

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

Taking The Easy Route – A Poem About Invisible Illness

How dare you say I’m taking the easy route

When you have no idea what I’m going through

You tell me I’m not trying

But this is all I’ve got

Sometimes just doing normal things

Takes up all my energy

There are days when normal life experiences

Make me physically ill

Work a little harder you say

I keep pushing

Pushing myself to exhaustion

Just trying to keep up

You’re not stupid – you say

Trying to pay me a compliment

Look it’s not that hard

This is all you do

But for me it is difficult

You make these things look easy

and can’t understand why I can’t

So you say I’m taking the easy way

Because life’s so hard I will take a break

Where I can get one

Always looking for the easy way out

Poems about Autism & Invisible Illness. These are the one sided conversations in my head. Things I never say face to face – because most things process on a delay. In the moment I often know I am upset but not exactly why. It is frustrating.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAustim #AnonymouslyAutistic

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

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

Our Physicians Don’t Know Autism

I can hardly believe the ignorance that is out there. In the world in the medical field. You would think that people who practice medicine and see people every day would know more than the stereotypes of Autism.

When you go to a medical professional you hope they will understand your medical conditions not doubt them.

I’m seeing a new physician – for me this is a very stressful change. It is a new person, I am driving to a new place, they have new procedures. Being in that office with that florescent white light burning my brain is hard.

My heart is pounding and I want to run out, so I close my eyes and count my breaths. I focus on the feelings in my lungs and the darkness until I am calm. There are several moments where I must do this through the examination.

At the end I mention my Autism, expecting for her to simply add it to the chart.

I handed over the wrinkled and folded diagnosis paper that I keep on hand for emergencies if I cannot talk. Already I could tell she was questioning it’s validity. “I’m surprised she put you on the spectrum” her overly friendly and patronizing tone was something that even I could pick up on.

There was so much I wanted to tell her. Desperately wishing to educate her – I was paralyzed by her doubt. This is a medical professional before me – if SHE doesn’t know we are all in trouble.

I wish I had said more but I was now trying not to cry.

I told her that I keep most things to myself and that growing up feeling different on the inside (but not knowing why) teaches you to hide everything that is strange about you. You begin to fear your own uniqueness. So you learn to hide everything that is different about you.

You learn to blend in as a survival tool.  All my mess is on the inside.

We need more education. If our medical professionals are still stuck on the stereotypes no wonder there are so many misdiagnoses out there and so many Autistic girls being missed.

Autistic women do not follow the male Autistic stereotype – and honestly not all autistic men follow it either.

This is a big problem. Where do we even start?

#SheCantBeAutistic #AcutallyAutistic #AutismAwareness #AutismAcceptance #AnonymouslyAutistic

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. 😉

 

My Biggest Secret – I’m Smart!

Most people who meet me have no idea. I  am a fly on the wall or a clown making jokes, deflecting from my deepest darkest secret. Nobody would ever guess, because my verbal (spoke) vocabulary is nothing particularly remarkable.

People sometimes describe me as “funny, silly, and quirky”. My coworkers describe me as “positive, friendly, warm, and kind”. Apparently the word feels as if I am a bubbly personality – they have no idea of the deep dark secret hiding within me.

Nobody knows that I am smart. I don’t run around wearing my IQ (144 SD15) on my blouse. That number is subjective.

If a cat tell’s a fish he is stupid because he cannot climb a tree he will never appreciate that the fish can breath under water – the cat cannot breath under water. The fish and the cat are different not less (as Temple Grandin said).

Most day’s I don’t feel particularly smart. I am great at problem solving, writing, and other random things, but sometimes struggle  greatly with basic life skills.

It is a frustrating enigma. People often say things like “you’re too smart for this” – I remember my mother saying this to me repeatedly through my childhood. Whenever I make a mistake it is always “because I am not trying hard enough”.

Growing up you learn that bragging does not bring you many friends and your parents beg you to stay humble so you hide your talents. Hidden under the dirt  and rocks your beauty can not shine.

My readers – you are my dear friends. Nobody knows my secret but you. Please do not spread this information around because nobody who meets me would ever believe it. 😉

Let your light glow. Do the things you love, be yourself, sing off key.

We are all smart in different ways. You cannot test a cat and a fish for the same skills.

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.