Category Archives: Nonverbal learning disorder

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

 

 

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

Misunderstandings

So many misunderstandings.

People read too much into meaningless things.

If I don’t look at you when you speak

you assume I’m not listening.

When my body language

doesn’t do what you’d expect

or when I laugh in the wrong moment.

If I say something using the wrong tone

you may think I’m rude.

If I cannot speak

I must be hiding something.

Over and over,

we confuse each other.

When I take something you say literally,

or my brain skips hearing words as you say them.

Sometimes I need time to process.

If I don’t get it

we’ll both stay confused.

Sometimes I can’t explain myself.

Please trust me.

Sometimes I process things on a delay.

Maybe we can talk about it another day – maybe not.

I’m not ignoring you or trying to

leave you hanging.

If I look confused, I probably am.

Give me time to figure things out on my own.

Don’t treat me like a child.

It’s only

a misunderstanding.

A poem about Autism and misunderstandings. Being Autistic sometimes feels like nobody understands you. Other times you know instantly that some misunderstanding has occurred.

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

Letter to My Younger Self

Dear Me, so bright eyed and bushy tailed.

Wild child, who can’t sit still, full of joy bouncing off the walls. Yes you are strange, but please don’t fear your uniqueness. Be you, don’t grow bitter.Stay strange and amazing.

You have so much potential. Yes, your mother is right you are smart. Stop believing when people tell you otherwise.

It’s okay that you don’t need people. That makes you independent NOT defective. You are not cold and robotic you are calm and logical. Yes you do things differently but some day this will be your strength.

The people who picked on you never made it far in life. It was them not you who had the problem. Bullies are insecure and often suffer on the inside, lashing out to make themselves feel bigger. Don’t be like them. Stay kind.

Silly girl, who talks to the animals and trees. Never stop. Don’t worry about what other people think of you. You are perfect just the way you are.

 

With deepest love,

-Me

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

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

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

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

Oh – tell my readers!

What IS this? Do you experience it?

 

With love and curiosity,

Anonymously Autistic

“Anna”

Don’t Make Me Speak – A Poem

Don’t make me speak

When I’m not ready

Sometimes the words won’t come out

From time to time my mind goes blank

Even more frustrating are silent times

Where I am screaming on the inside

But my mouth will not move

If I try to force the words

I may be lucky to get something out

Although these forced phrases

Are never what I hope they will be

Everything inside me is pounding

As I try to find something to say

The more I try to speak

The further away my words slip

Eventually I may storm off

Or begin to cry

It is painful and disorienting

When I try to force them

There is a panic

If I try to push through

When I don’t accept

What is happening to me

Please don’t mistake my silence for disrespect

Don’t make me speak

Give me time and patience

When I am kind to myself

Eventually the words return on their own

A poem about not being able to speak and anxiety.

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

 

Autism or Asperger’s?

Autism or Asperger’s which is it? Well that depends on where & when you were/are diagnosed.

In 2013 the US made a switch to the DSM-5. The medical coldness and pathology in this document still makes my skin crawl. It is so negative and one-sided. I wish for every bad thing they listed they could add some of the skills that you can look for and encourage in Autistic children.

Other countries use other similar diagnostic manuals.

This switch has caused a great deal of confusion because of the way it eliminated Asperger’s, lumping it into the Autism Spectrum.

Now in the US, depending on when you were diagnosed, there is no Asperger’s – we are all Autistic. Random Aspie fact – some people diagnosed pre 2013 with Asperger’s choose to say they have Asperger’s and others choose to tell people they are Autistic.

People were starting to understand Asperger’s as nerds but the new Autism terminology carries a totally different set of stereotypes and stigmas. Before when you told someone you had Asperger’s they could almost accept it sometimes.

Now if you tell them you are Autistic they immediately doubt you (only because they do not understand what Autism really is).

Going by the old diagnostic manual I would have Asperger’s because I was practically born reading and speaking (despite not knowing what I was even saying half the time). Fairly classic, a child lost in her own world of things and thoughts.

I had a fragile appearance and a cold serious blank face. Somehow my relaxed face always prompted people to ask me if I was alright. Apparently I appeared uncomfortable. I’ve since learned to match my face better to the situation.

When asked about topics of interest I could ramble on about them endlessly. My grandparents thought I was cute and my mother thought I was a wise ass. I was a “smart kid who didn’t try hard enough”.

Nobody noticed my invisible struggles, my sensory sensitivities, my poor coordination, lack of organization, and troubles making friends. The social things always were dismissed as long as I kept everything else in line. I was “too smart” and “lazy” and a million other names.

Only a few years ago did I solve the mystery – I first learned about Autism – really learned about it and understood what it was. I’d heard about Autism before but only in a very medical way. Hearing my life like this did not set off any alarms.

What shook me awake before and after my diagnosis were the voices of other Aspies on the internet and in books. Reading things from their perspectives was like reading things from my own perspective. Things I thought were unique struggles to me are very common Aspie troubles.

This is why I encourage every one of you to write and share your stories – because people NEED to hear them. If the Aspies before me had not done the work to share their Autism stories I would still be lost and this blog would not exist.

These little ripples can turn into big waves. Make waves. You are not alone.

It doesn’t matter to me if I’m Autistic or Asperger’s. We’re all in this together and regardless of our labels do share many of the same experiences.