Category Archives: Women

Please Read Autistic Perspectives This Autism Awareness / Acceptance Month

As you may or may not know April is Autism Acceptance / Awareness Month and this year I am putting out a plea that everyone read, share, and encourage anyone talking about Autism to read blogs, watch videos, and learn from actual Autistic people – not big organizations like Autism Speaks.

If you are an Autistic person with something to day, or anyone with something positive to say, I would like to encourage you to write, share your experiences, and be a light of truth in the world. We need more Autistics Speaking and less Autism Speaks (and other organizations about Autism run by Neurotypical people) speaking about Autism.

Finally, thanks to the internet, many of us can no speak (I use that term loosely since some of us prefer to type) for ourselves and it’s time to speak up (and share). If you can’t share publicly, I’ve found anonymous blogging amazing.

Support the online Autism community. Share and connect with other Autistic bloggers – remember some of them may have social anxiety and may not want to meet face to face. It feels good knowing that you are not alone.

Remember there are many diagnosed Autistic people in the world, waiting to be woken up. Many of us did NOT understand Autism until we read the words of other Autistic people. Some day when you google Autism, I dream the works of actual Autistic people will appear on top.

People know about Autism but they don’t understand what it really is or Autistic people.

If you want to learn about Autism, why not go straight to the source? – an Autistic person.

 

#ActuallyAutistic #AutismAwareness #AutismAcceptance #SheCantBeAutistic

Autistic Confessions – I Hate Phone Calls

Phone calls have always given me anxiety but did not know why until I really looked at myself. For many years all I knew was being on the phone, unless with someone I am close with, caused me great stress. I hated talking on the phone, something most girls love, but why?

Since my Autism diagnosis many little truths about myself keep popping up. Little things that were always funny are starting to make complete sense. I see myself and my actions through a new light and spend a lot of time really digging into my motivations and the reasons behind my anxiety.

I get anxious on the phone because I have a verbal communication impairment. I have hyperlexia which means that my comprehension for reading, writing and typing far exceeds my verbal comprehension. People who are used to corresponding with me via email would never guess this. On the phone (and in face to face conversations) I am often confused.

I also have Sensory Processing Disorder. People are hard to hear over the phone and when you add ears that don’t filter out any background noise things can be impossible.

Phone calls confuse me because I miss  a lot of details because my brain can’t keep up. Because I am Autistic my face to face communication is impaired.

Also people tend to talk faster on the phone and don’t like when you pause to think about your words – because they think you hung up. However, I need time to think before I speak. The entire thing is very stressful.

That is why I hate phone calls.

 

#ActuallyAutistic #SheCantBeAutistic

Autism Acceptance Day Wish List

This year for Autism Acceptance Day I have five wishes. Some day they may come true – then my work blogging will be complete.

  1. I wish everyone would be aware of Autism, what it really is, and what it really isn’t. Too many misconceptions about Autism are out there, what causes Autism, what Autistic people need. Someday I hope the rest of the world can accept the truth.
  2. I wish Autistic people could be accepted for who they are. In my dreams People would not ask us to change or be more “normal”. Sitting a chair, rocking back and forth while humming would not be thought of as strange. Eye contact would not be forced and passing would be a thing of the past.
  3. I wish Autistic women and adults would stop being overlooked. The media, Autism organizations, and Autism service providers are often focused only on children. People seem to forget about Autistic adults, as if we grow out of our brain types as we age. For me, the older I get the more Autistic I feel – but since I “function so well” cant really be that Autistic or need services (sarcasm).
  4. I wish Neurotypical people would understand what passing is. Maybe if they understood the work that goes into pretending to be “normal” they would not ask this of us. Maybe if people understood passing they would not doubt me when I tell them I am Autistic. I hate being called / thought of as a lair.
  5. I wish we could stop pathologizing Autism. Maybe if people understood, accommodated, and accepted us we could start thinking of Autism as a difference not a deficit. Yes, I know we have our difficulties and commodities. Trust me I have my own, however a LOT of my disability comes from the fact that people around me are unaccommodating of my requests. They call me dramatic and high maintenance, when the lights above me are making my brain throb and I ask to sit somewhere with better lighting (or ask for other accommodations).

 

#ActuallyAutistic #SheCantBeAutistic

Autistic Confessions – Am I REALLY Autistic?

A conversation among my readers brings up an interesting common feeling among Aspies. Many of us remember reading the definition of Autism or Asperger’s before we were diagnosed. A lot of us read those words and thought – “Oh, no this is definitely not me!”

Still something doesn’t let the thoughts settle so we do a bit more digging. For me it was finding other Autistic writers in books and online. Before hearing their voices I had always felt like some creature other than human. I assumed I was a broken human, defective, odd, strange.

It started with YouTube videos, then I found blogs, and invisible disability websites. Finally after a lifetime in the dark I found my tribe. Hearing and reading voices that echoed my own gave me confidence. Before I felt broken but with the Aspies I was just another one of the group – a real life “Ugly Duckling” story.

We had things in common, many things. Things I never share with people, experiences that most people cannot relate to or understand, the way my mind works – my deepest darkest secrets. The Aspies and I had a lot in common, all the things I’ve never tried to share with other people because I knew the looks people would give me for being honest.

All this and still I wondered if I really was Autistic so I decided to seek a diagnosis. Even after getting a diagnosis I STILL wondered if I really was Autistic. The label, handed over by a doctor, seemed to imply that there was something “wrong with me” and I never felt that way – at least not in relation to the way my brain works.

One of my readers mentioned “feeling like she was not disabled” enough to be Autistic despite being officially diagnosed.

Too many medical types and non-Autistics speaking about Autism. It’s about time we start speaking for ourselves.

This is why we need more Autistic writers to speak out about what they are experiencing, so the other Aspies can wake up, stop feeling alone, and broken. There are too many lonely Autistic people in the world. I wish them truth and ease. Hopefully some day they will find their home.

It took me a long time, even after my diagnosis to fully accept the truth – especially when almost everyone I tell about my Autism won’t believe me. There are still days when I wonder.

Maybe it’s my OCD? I know it makes me second guess and doubt myself even when I KNOW I’m right.

This strange feeling that I only get on my best, healthiest, clearest mind day – am I REALLY Autistic? (Then a bad sensory day where I cannot leave the house or cry in public reminds me – still an Aspie!)

Check out the comments that inspired this blog post HERE on AnonymouslyAutistic.net.

#ActuallyAutistic #SheCantBeAutistic #AutismAwareness #AutismAcceptance #AnonymouslyAutistic

Autism Level 1: “Requiring support” – What Support?

Doctors and medical professionals are trying to nail down and better categorize Autism. The latest grouping places the entire spectrum into three buckets, depending on the level of support required for the person to function normally in society.

I fall in to the Autism Level 1: “Requiring support” category.

Level 1: “Requiring support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Making Sense of the Three Levels of Autism – verywell

So they give me this label and throw me back out into the world, ironically without support. Now what? I am supposed to have this key that allows me to ask for things. My doctor tells me I have protected rights.

At first I am excited, finally I might be able to be more comfortable in my surroundings. I can ask for things and there is a reason besides me being difficult or high maintenance. Finally validated, yes those burning lights DO cause your migraines and avoiding them would be good for you.

What next? Asking for supports turned out to be more difficult than I thought it would be.

This category does not do my life experiences justice. On many levels I can surpass my NT peers but on a social level I often fail. When I put on my masks I can play these amazing characters who are social and confident – but being this person, who they want me to be, kills me. I can do her I can “be normal” but summoning the strength leaves me empty and ill.

Holding up this mask is a necessary evil from time to time, she gets me through my work days and the hard times. She is a character, someone I wish I could be – someone I am forced to be when backed into a corner.

Because of my mask I have peers in both groups, but the NT’s have never felt like peers. Watching, and observing them, trying to memorize their pasterns and mannerisms. Hoping to decode their intentions and feelings. Even reading their faces is difficult for me.

People don’t want to give me support because “I CAN be normal.” I am capable of acting like there is “nothing wrong with me”. (Quotes representing their words NOT mine.)

I can hide my pain, panic, and discomfort, manage to hold myself together just long enough to flee from the public eye. I always do – but I still have sensory issues and meltdowns like many of my ASD peers.

I need regularity and a predictable schedule, I need natural light and calm conditions or my overactive amygdala goes crazy and I get anxiety related illnesses. In my mind I am strong enough to do anything but my body and nerves won’t let me push myself as hard as I used to.

As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow. My Autism becomes more and more invisible, despite the disruptive symptoms, growing more intense.

I need help and supports more than ever but asking for them never goes well. Most people don’t believe I’m Autistic, and those who do say “but it’s  not that bad, you are normal.”

Employers don’t understand, they say things like “You only have to deal with florescent lighting three out of the five days a week you work – if you were here more maybe we could give you a window.” “You can’t wear earplugs today, we need you to answer the phones because nobody else is available.” For a job that was originally going to be FULLY REMOTE.

It always comes out like I am being unreasonable, picky, or difficult. At least that is how the opposition to my requests tend to spin things.

My accommodations are simple, let me type vs hand write, don’t give me spoken directions, let me sit in a quiet space (or wear earplugs) with natural light. Don’t ask me to stay late at the last minute if you can avoid it – if you know I may need to stay late tell me in advance. Most importantly please don’t make me go outside when it is cold. I have EXTREME cold sensitivity.

These are the accommodations that I’ve requested from my job – these are the supports that I would like to have because I feel like they are reasonable accommodations, and should be protected under the ADA.

The only support I get is a laptop – because it belongs to me and is essential to do my job (everyone at my work gets this so it’s not really a support). I can take notes on it, keep track of my schedule with it.

It is AMAZING that I get to work remote a couple of days a week. I am happy to have these things but the other items are important to me too and I haven’t been able to get any of them – not even the last one which always leads to meltdown.

Maybe I don’t complain enough. Nobody sees me on my worst days, when I am really struggling because I am PHYSICALLY ill from the stress of the environment and can not leave my house.

I “require supports” but it doesn’t mean I can get them. After all I’m (not always by choice) Anonymously Autistic.

Some days I feel like I am falling apart – if I stay in this world too long it may end me. Nobody can take care of me, I have to keep working.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

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

 

 

Autistic Confessions – Intrusive Thoughts

Intrusive thoughts – I’ve had them since I was a child, although the older I get (due to continuing great effort on my part) the more manageable these things have become.

When I was a child, I remember being disturbed by some of the things that would randomly pop into my head. Very quickly my inner monologue would begin to obsess over what ever horror I had just seen or thought.

“Why I am I thinking about that? Is this going to happen? Do I want this to happen? What’s wrong with me? This is not normal.” 

As a child I was convinced I would grow up locked away. One day my mind would crack and all the crazy would fall out, people would know, and they would put me away. It sounds ridiculous but this fear was very real to me for many years. It never fully vanished until my Autism diagnosis.

I’ve learned to manage things. I’ve learned to recognize the patterns in my mind (most of the time). When I see myself slipping into that same old spiral it’s time to move my mind to something else – a distraction.

Turn on the radio and sing out loud. Blast your stereo and dance until the nagging fades away. Write a poem, make a sketch, go for a run, or a walk. Get out of your head – turn it off, make it stop. If you go there the trap will have you deep in the dark.

I’m at War With Myself – Parts of My Autism People Can’t See

Sometimes I feel as if I am constantly in a battle with myself. Fighting against irrational thoughts in my mind, and unpleasant sensations in my body.

Constant nagging in my mind – “You might have left the door unlocked.” When I know very well the door should be locked. “You forgot to water the dog.” Despite leaving them with a full bowl.

Social anxiety tells me I’m not good enough and I have to remind myself that I only feel that way when hanging around the wrong people or large groups.

It’s like my adrenal gland is extra jumpy. I feel the surge of chemicals flowing through my body, making my heart and mind race. It used to cause panic attacks, but now it happens so often that I’ve learned to recognize the feeling and breathe through it. The sensation is unpleasant and can also lead to sensory overload or meltdown if I don’t relax – so I ALWAYS relax.

My brain tells me the lights are too bright, so I squint all day until I have a headache and my head is throbbing. I can’t tune out the buzzing light bulbs and humming electronic noises coming from the walls – so I often wear headphones with soothing music.

I get dizzy when I stretch my arms high over my head – probably not related to Autism but really annoying because I am short. Just throwing it out there because my readers always surprise me with what we have in common.

The air outside is almost always either too hot or too cold because I cannot regulate body temperature well. I am only comfortable between about 75-90 degrees anything over or under that is really pushing it.

People’s voices stick better in my head then their faces. I often have a VERY hard time recognizing people especially out of context. It’s called face blindness and it can be a pain, especially in a corporate environment.

When I do socialize I prefer to stick to people I know, because I can’t read the faces of strangers unless someone laughing, crying, or making some other extremely obvious face. I study people I know so I can learn their faces better but still this takes a LOT of work on my part.

Sometimes I come off as rude. My body language and tone don’t always come out the way I want them to. Misunderstandings are a way of life for me. I’m used to this now and often don’t even bother trying to correct people because they don’t understand tone not matching feelings, etc.

I take things literally – but normally can figure things out if there are context clues.

Following spoken directions is difficult – but if you give me time to write down what you are saying so I can read it later (over and over) I can get things done. It’s not that I don’t understand, it’s that I understand in a different way.

My sort term memory is about half as good as most people. They say people can hold about 7 numbers in their working / short term memory – a phone number.  I’ve never been able to hold more than 3 numbers in my head at one time. If you say something to me when I am trying to hold those 3 numbers in my head the numbers will probably vanish.

Side note my long term memory is forever.

All of these invisible things. I am constantly battling myself, trying to fit into a world where people can’t imagine what you’re going thorough. When you try to tell them they look at you like you are crazy or dishonest – and honesty is important to me.

It hurts when you ask for help and nobody is willing to stick out their hand, so I keep these things to myself.

#ActuallyAutistic #AnonymouslyAutistic #SheCantBeAutistic #InvisibleAutism

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.

Autism’s Not So Bad – Why I Focus on The Positive

On this blog I share my difficulties so that others who have similar troubles will know they are not alone.

In life I try to focus more on the positives. It is better for me to focus on the things I can do versus worry over the areas I’m lacking.

I could beat myself up over my flaws until my self-esteem is in the toilet and I slip into a deep darkness. Trust me I’ve been there before and getting down like that is not helpful. Sure, I have limitations and disabilities but we all have troubles and obstacles to overcome.

When I was younger adults pointed out my flaws. Teachers and school highlighted all the ways I was a failure. I felt completely inadequate and was physically ill from anxiety.

My skills and artistic abilities were always discouraged. Nobody pushed me to peruse my talents. People assumed I would grow up and never make anything of myself.

It has taken years to recover from this trauma. The past few years have been the best years of my life – especially since discovering my Autism. The amount of self compassion needed to accept this truth helped me shift my thinking.

My Autism has given me quite a few gifts that I would like to highlight. These are the things I think about during my day. Reflecting on the positives keeps me going, making sure I don’t fall into a pit of self-pity. I have to keep moving.

I am extremely detail oriented (almost to a fault sometimes) but when doing the right types of tasks I am better than most at catching certain things.

My personality – these traits I believe come from my Autism. I am very loyal, honest, and self motivated. Above all things I value the truth.

I am a very dedicated employee and am great at following a list of tasks. I don’t socialize when I should be working and generally try to do work I love. I work hard and follow the rules.

Peer pressure does not get me. I am able to see when others are being illogical. I am a VERY logical person. I can also be calm when others panic (depending on the situation).

I have a bond with animals and nature. A walk in nature cures anything in my soul.

I’m not afraid to go against popular opinions – and will often comment when I disagree with them.

My perspective is different. Autism affects the way I intemperate the world so I have a unique perspective. This can be very helpful in a group when looking for new solutions.

I see music videos when I close my eyes and recall songs in my head like a jukebox. The movies come alive in full color. This is just magical. I also memorize songs and know all the words to just about every song I enjoy.

I can write in a way that comes from my Autistic experience. I’ve read so many books. As a child I read fiction, Stephen King, Dracula, and many more adult books. I remember the beautiful patterns in the words. I’ve read all the classics and now I read non-fiction. These things have rubbed off on me.

Patterns are everywhere and I see them. I see pasterns in everything – people, objects, concepts. Sometimes I get lost in them but I’ve learned to use these things as a guide for my life. It makes things more predictable – which most Aspies can appreciate.

Synesthesia – I enjoy mine but am not ready to put the experience into words. Sometimes it is distracting and even distressing. It made driving very difficult. Until about a year ago I didn’t even know there was a word for my experience. Still – I actually love this part of myself and would NEVER give it up.

So despite the days where I am sharing a painful experience, these are the things in my mind on a day to day basis. I remind myself every day of the ways I am blessed so that I am not overcome by darkness.