Tag Archives: #SheCantBeAutistic

What IS Autism – From An Autistic’s Perspective

A reader asked if I had a blog post that described what Autism is. I started to say that this entire blog gives great first hand information from Autistic people.

Our experience can not really be summed up in a one page post. There are a lot of things that make us different.

First I want to say that each and every Autistic person experiences the world in a very different way so what I state below may not be true for everyone. I am going to go over some generalizations that are true for me, also taking in mind what has been shared with my by my amazing readers.

We tend to struggle with spoken communication but many of us do VERY well behind a keyboard.  We can have tricky short-term / working memories but a LOT of us have long-term memories that are FOREVER. We need time to process and go over things but once we understand something it stays in our minds (or that is how it is for me). Time to organize and prepare thoughts is essential for me because of this.

Many of us have sensory sensitivities. Bright lighting can cause chronic migraines and other illnesses. I can hear everything which is unpleasant because I can’t tune individual things out. My hearing is essentially so sensitive that I can’t hear conversations in busy rooms. Not to mention the distraction of every small noise seeming VERY loud. Clothing can be itchy and irritating. Tags and socks are the worst and certain grooming activities can be extremely uncomfortable. Getting a mani-pedi is NOT relaxing for me. Even getting a massage is difficult because of another person touching me can make me want to jump up and run.

I have a hard time sitting still. Our bodies (and minds) crave constant motion. I am always playing with something rocking in my chair, humming or singing. This is called stimming. It is a regulatory behavior and helps with sensory input, relaxation, and focus. I also speak to myself out loud a lot. These things “normal people” don’t tend to accept but we REALLY need them to.

Many Autistic people have comorbid conditions – other illnesses with their Autism. Some examples are insomnia, epilepsy, IBS, OCD, anxiety, depression, migraines, apraxia, ataxia, sensory processing disorder, the list goes on. These, in my mind, are not Autism but rather Autism related conditions. They differ from person to person.

Autistic people can be extremely intelligent but learning disabilities and intellectual disabilities can also happen with Autism. Just like “normal people” our IQ’s are all over the place. People often assume Autistic people all have intellectual disabilities. I prefer to think of it as a difference. Also EVEN non-verbal (non-speaking) Autistic people can fall into the “high IQ” category. Never assume an Autistic person cant’ understand you.

I can speak but am not as good at it as most “normal people” but there are a lot of Autistic people who have apraxia of speech. This means they may have all the words and thoughts inside BUT the mouth pieces don’t move. For some reason the brain can’t tell the mouth and related parts how to work. Some children speak late and others never speak. I had no speech delay.

Dyslexia and Hyperlexia are also common in Autism. I am Hyperlexic.

Our brains tend to be spiky. We can be far above average in some pretty random areas, art, math, music, memorizing, writing, or not. At the same time our deficits in the areas that don’t develop as fully can be perplexing to the word’s general population.

For example – my conversational skills are so limited that I can NOT tell when my turn to talk is. My solution? Don’t talk. Before I stopped talking people kept calling me rude but I was doing my best. I never wanted to be rude. I’ve become more quiet and contemplative – more of an observer than I used to be. Actually this has been an improvement.

Autism is invisible. Unless I am stimming wildly in a chair or flapping my arms wildly you would not see my Autism – and these are things I do in private. Any time I try to share with someone that I am Autistic, a 34 year old woman who appears to have it together, I am dismissed.

I try to share mostly when I am looking for some understanding about an accommodation that I am about to ask for. I ask for little things – natural light, a quiet spot, to be able to take notes on a laptop.

Often people tell me I don’t “need” these things and that I am making excuses for myself. I just want to do my best. This is the hard part, when you ask for help and people say “nobody else will have that” or “it’s not fair to play favorites” even better “you already have it pretty good”.

Summing it up in a blog comment or post is impossible. Please dear readers, I ask that you provide your own experience in the comments so that the world may someday redefine wheat Autism is from OUR perspective.

 

With love,

Anonymously Autistic

“Anna”

 

#ActuallyAutistic #InvisibleAutism #AutismAwareness #SheCantBeAutistc #AnonymouslyAutistic

 

 

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

 

 

Invisible Autism – Invisible Disabilities

I am Autistic

My Autism is invisible

It is hiding on the inside

Things in my mind

I do not share

When I cover my ears

and I bow my head.

Sometimes the world is so loud

I can not breathe

Suffocating in the sound

I hold myself tight

Trying to rock away the pain

For a moment I am visible

Did anybody notice?

My eyes dart around the room

Distracted people

My pain is hidden

I remain invisible

A poem inspired by Invisible Illness Awareness week

#ThisIsChronicIllness #InvisibleIllness #InvisibleAutism #ActuallyAutistic #SheCantBeAutistic

You’re not autistic. — bipolarunspecified.com

 

Why do people say that? I hearit all the time. Angry parents can be nasty when I say I’m Autistic. How can I say such a thing while living on my own, talking, and holding a job?

I am an invisible Autistic. We are everywhere, many of us suffer silently because people always accuse us of lying if we try to come out.

It’s impossible for me to speak to someone who thinks that I am lying. I shut down and my words evaporate, making a fool of myself.

Unable to explain or ask for help some of us stop trying. We are “too high functioning” for our opinions to matter but not “functioning” well enough to lead normal lives.

 

She said, “You have Asperger’s; you’re not autistic”.

News flash: Asperger’s is a form of autism. It’s on the spectrum.

But what she probably meant is what a lot of autism moms would mean if they said something like, “You’re not like mychild.”

So, I was autistic on the phone with my family member, I have been all of my life, and I will remain autistic until the day I die.

I find it unfortunate that these stereotypes still exist. I’m supposed to look or behave in a certain way, otherwise there’s no way I could be autistic. I wish more people would pick up a book or listen to actual autistics and not just remember the movie Rain Man.

Please check out the full post below.

via You’re not autistic. — bipolarunspecified.com

Autistic People Pretending to be Normal – Anonymously Autistic

There is something that is known among adults in the online Autism communities – society expects Autistic people to blend in. We live in a world where being different is not always welcomed.

People don’t understand Autism and naturally fear what they do not understand. I can not blame or grudge these people. They are acting on instinct by excluding what is not the same.

Many introverts can relate to this struggle as society tends to dote on extroverted and social people.

If you read definitions of the words introvert online and in books you will find the qualities described in a negative and often pathological way most of the time. “Reclusive, self-centered, loner.”

The definitions of the word extrovert are almost always more positive.  “Social butterfly, energetic, group-minded.”

What is an introverted, socially awkward Aspie to do?

Passing – an Autistic person who is trying to blend in and pass off as neurotypical.

Many Autistic adults, especially those who are not diagnosed until later in life, have grown up with a sense of shame for their “autistic-ness”. Early on we learn that kids will be mean and tease us if we flap our hands or act too strange.

Fear of bullies is often the first thing that causes us to turn inward. Autistic children are often bullied, mental and physical abuse from our peers is common and due to our language and communication difficulties we often do not tell adults.

We may not really understand what is being done to us and feel as if our peers are unpredictable, irrational, and dangerous.

We learn to blend in – blend in or be beat down. Our vicious peers teach us that our quirks will not be tolerated. Teachers tell us “quiet hands, sit still, you cannot wear sunglasses, or hats in the classroom”.

As children many of us are sick or uncomfortable but learn to suffer in silence.

It is hard for us to explain the unpleasant sensations in our bodies. My eyes burned from light so I told my mother I had a head ache. I took a lot of baby aspirin for no reason when I was little.

Once I remember telling a school nurse that I feel like I will throw up in the next hour if I don’t go home. She looked at me like I was crazy and told me that it was impossible for me to know that. She made me go back to class where I later threw up.

She did not understand that I was trying to tell her that I was getting close to the point of sensory overload and when I get to that overload I start throwing up. I was undiagnosed.

To her I was a child trying to get out of class. This happened to me several times a week and the school nurse insisted to my mother that I was somehow making myself sick to miss school.

People told me and my family that I was lying or making things up. Nobody understood, believed, or wanted to help me. I was dismissed.

Speaking up was not helpful and sometimes when I did people looked at me like I was crazy, so eventually I stopped.

With no other options I began to pretend to be normal but blending in has it’s dangers. If people spend enough time with me, they figure out that I am “unique”. In professional settings it takes all of my concentration to hold my “autistic-ness” in.

The offensive “compliment” – “You hide your Autism well” has been given to me in the past and ever since I have been greatly disturbed.

Why should I have to hide my Autism? Is it something that I should be ashamed of? I love who I am and would never want to change that even if I could. Hiding… in the closet as if there is something wrong with the way I was born.

Passing is not even good for your mental health. It teaches us to have shame in who we are. It gives a message that we are not good enough.

Passing takes up so much of an Autistic person’s limited social energy that we go home and have sensory meltdowns the minute we can be alone. When I was a child – and even now with work – I could hold things together through the school day but would come home and fall apart.

If an Autistic person is focusing on passing they are tense, working brain muscles that are not very strong, and are not relaxed. Imagine if you were tense and wound up for 8 to 10 hours straight. How would you feel when you got home?

Eventually this can lead to a total implosion, breakdown, or possibly – when we are having extreme difficulties keeping up with everyone’s expectations of us – a diagnosis.

I have to write everything down because my working memory is not great – but my long term memory is forever. I need to be alone. I need to stim. I need to wear hats and sunglasses indoors.

I need to avoid bright lights like Gizmo from Gremlins (and sometimes may exclaim “Bright lights!” in a Gizmo voice the instant a bright light stings my eyes and brain).

Even my humor is not understood or appreciated by most people. Not wanting to be thought of as a “childish” I often keep my fun comments to myself so people never get to know the real fun and silly me.

The modern social world is not built for us – but we are expected to fit into it like a puzzle piece. I am not a puzzle. I am a human, an Aspie. I’m not like you and shouldn’t have to be.

Trying to fake it is detrimental to my health and I can’t do it anymore.

#anonymouslyautistic #shecantbeautistic #actuallyautistic

#SheCantBeAutistic

A powerful hashtag (#SheCantBeAutistic) has been blowing up on Twitter this month bringing attention to an issue that I’ve been talking about a lot recently.

I was not diagnosed until I was 30 years old because people thought #SheCantBeAutistic.

They were wrong. I am Autistic and I spent too many years waiting to find that out.

Below are just a few of the reasons that I “can’t be Autistic”.

#SheCantBeAutistic – she has a great job.

#SheCantBeAutistic – she pays her bills on time.

#SheCantBeAutistic – she works full time.

#SheCantBeAutistic – she has a husband.

#SheCantBeAutistic – she has pets.

#SheCantBeAutistic – she is too smart.

#SheCantBeAutistic – she wears makeup.

#SheCantBeAutistic – she bathes.

#SheCantBeAutistic – she is very talkative.

#SheCantBeAutistic – her imagination is rally good.

#SheCantBeAutistic – she has feelings.

#SheCantBeAutistic – she knows how to read and write.

#SheCantBeAutistic – she is successful in life.

#SheCantBeAutistic – she seems happy and warm.

Many Women With Autism Are Going Undiagnosed | HowStuffWorks NOW

Even HowStuffWorks knows that Autistic women are going undiagnosed.

The male diagnosis structure is not fair to women and “high functioning” levil 1 or Asperger’s Aspies.

Autistic women are often told they “cannot be Autistic” because they have learned to hide their pain.

I take no credit for the video below but the fact that a big website is mentioning this issue is a bit of a victory in my eyes.

Autism is NOT a boy thing.

#shecantbeAutistic #actuallyAutistic

See the video on  HowStuffWorks.

Video link HERE!

 

Stuff Mom Never Told You – HowStuffWorks – has another great video here.

Video link HERE!