Category Archives: Autism Awareness Month

Meltdowns – Banging My Head Against the Wall

It’s hard to write about meltdowns, they are very difficult to describe. The most frustrating part of having one is the fact that I have very little control over it. In fact while I am having a meltdown it feels as if I have lost control of everything.

I become very much like a child having a tantrum, but the reality is at that point I can no longer think clearly so my cognitive abilities may not be far above that of a child as the episode comes on. I am completely overwhelmed by everything.

Many of my meltdowns are tied to anxiety.

I don’t often bang my head against walls but if I do, it is because I am in a very dark place, sick, or in pain. This is a last resort scenario, when something is too much and I just “need it to stop”.

Not encouraging this behavior just trying to shed some light on something that doesn’t get enough discussion.

Every time I have a meltdown I write a poem. Here is one I wrote a while ago.

Banging My Head Against the Wall

The worst of meltdowns.

Trapped with my own anxiety and sense of dread

swirling endlessly inside my head.

I can’t escape.

Please make it stop.

Curled up rocking my back to the wall

tears and eyeliner pouring down my face.

Stop! Stop! The panic continues

while I bang my head up

against the wall.

It’s gotten to that point

where everything falls apart.

You think I am overreacting to something small

but this is the result of holding things in

 hours, weeks, even months.

It’s always the same.

I reach my limit.

Eventually that one thing happens

and everything just becomes too much for me.

The weight I’ve been carrying comes crashing down hard.

Desperate, panicked, and alone, I am stuck beneath it.

“Get a hold of yourself! You are acting like a child!”

The words don’t help because I can’t

make it stop.

I would if I could

but this has to run it’s course.

Once the meltdown starts it overtakes me.

All I can do is run, make irrational choices, and cry.

When a meltdown hits I am lost and tormented.

You may be here with me but I am alone

and feeling helpless

drowning.

School Was the Hardest thing About Growing Up Autistic

Someone asked about how I was in school.

I was in special education when I was young (early elementary school) and had tutor a few years later. I was a b-c (sometimes d student) with poor social skills. However, I still feel I was “smart” just not smart AT school.

Things that bore me go in one ear and out the other while things that catch my attention and interest me I can learn every detail about. That’s just how I learn.

School wanted me to learn boring things that seemed completely irrelevant and I had a lot of trouble with that.  My other problem at school is that we were expected to sit still for long periods of time without fidgeting. At home I had fidget toys all around me (pinwheels, kaleidoscopes, silly putty, and more). At school no toys were allowed

Teachers saw me as a problem, something they did not want to deal with. They wanted to send me away or pass me along. I even had one teacher tell me I “should have failed her class but she passed me just so she would not have to see me again next year.”

I started school young, excited, and ready to learn. I’ve always had a passion for learning but school almost beat that out of me. By the time I left school I didn’t even know who I was anymore.

School didn’t want me and college was never a real option for me.  I was dismissed over and over again by people who should have motivated me.

Every day I am grateful that I am self motivated. When I want something I push myself for it. I know not everyone has this skill – I wish I could share it with anyone who needs it.

Growing up in my own little bubble, the world in my head is magical and bold. My whole life it has felt as if people are constantly trying to pull me out of that bubble – but the bubble is where I want to be. I am the bubble and the bubble is me.

School wanted me to be a cube but all my edges were rounded. Why could I not just be myself?

 

#ActuallyAutistic #SheCantBeAutistic #AutismAwarenes #AutismAcceptance

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

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

How Could the World Be More Autism Friendly

Those who know me, and the readers who’ve followed long enough, are well aware that I like to focus on the positive. My last post was not the happiest because life has been hard and it is wearing on me.

We’ve been having conversations in the comments on this site and on Twitter. Talking about all of the problems and hardships Autistic people face in the world. In general I feel like focusing on your problems all the time can be a very dangerous thing. Shifting our attention to solutions tends to be much more effective.

Today I would like to write about my dream world – a world that is more friendly to Autistic people. Maybe some day, long after I am gone, it will be a reality.

It is a beautiful place, where there are always quiet spaces to get away when you need a private moment.  Every light switch has control for the light level and temperature, because everyone’s brain needs different lighting. (I like red-ish light and can not handle bright white, blue, or green). Natural light is used whenever possible and working from home is always an option.

In the place of my dreams you are always aloud to carry a laptop for notes, people don’t mind sending instructions via email, or handing everything over in writing. People wouldn’t call last minute meetings and would stop insisting on phone calls when an email is a perfectly acceptable form of communication.

Work schedules would be more predictable and people would not ask you to stay late for extra tasks at the last minute. (I just need to know when something is over – so I can conserve the perfect amount of energy.) Shifts could start at the same time every day and end at the same time every day (when you have insomnia one night working till midnight can throw off your entire week when you normally wake up early.)

Job descriptions would be more accurate so it is easier for us to determine in advance if we are qualified for a task. Employees would have input when job descriptions change and would be able to turn down new tasks that don’t suit their natural abilities.

Multitasking is a word that would disappear in my new world. Focusing on one thing at a time and doing it perfectly is far more efficient than doing several things at a time half-assed and in a rush. People would stop rushing you, and asking “can you multitask” in interviews – since most people don’t truly multitask very well even without Autism (even when they THINK they do).

Windows in large buildings could actually be opened so fresh air could be allowed in. Offices would have space for people who get cold easy and people who get hot easy so everyone could be comfortable.

Regular breaks would be encouraged and standing desks and exercise ball chairs would be more widely available so people don’t have to sit stagnate all day. Employers would stop valuing their employees based on how many hours a week they work and would focus more on dedication the quality of work turned in.

Office politics would disappear and work ethic would have more value than who’s ass you kiss. “Optional” work functions would really be optional (meaning your boss would never make comments like – “You weren’t at the last 3 office happy hours.” If something is necessary for a job it would be explicit not implied. If the happy hours are mandatory they should just say so.

Most importantly in this perfect new world everyone understands and accepts Autistic people. We don’t have to depend on unhealthy coping mechanisms like “passing”. Nobody expects us to act like everyone else.

It is a dream I have, a magical world. Some day I hope the world becomes more Autism friendly.

I’m Tired of People Talking For Me

My entire life people have been talking for me. As a child who could not express her emotions well – my mother often narrated how I was feeling and perceiving things (incorrectly) to the world.

She would make assumptions about the reasons I did the strange things I did and tell people these things as if they were facts – often times in front of me. Eventually I started to believe some of what my mother said about me even when it was not true.

Certain misunderstandings always bothered me, and many things were never worth correcting but now as an adult I am done letting other people speak for me.

I am done letting non-Autistic people tell me how I am feeling. I am done letting letting doctors pathologize me. I’m done letting other people explain my behavior.

This is me speaking for myself – a proud Autistic woman speaking with her voice through a keyboard, finally feeling understood for the first time in her life. These words don’t come easily from my mouth but here every intention is organized and clear.

After years of letting others talk for me, finally I am speaking up. I have so much to say that words pour out of me like water from a broken fish tank. The flood gates are open.

I’m tired of letting people talk for me – I’m perfectly capable of speaking for myself spreading Autism awareness (in my own way).

If You Don’t Read the Comments Section of this Blog

You really should!

This blog has grown an amazing community of Autistic people (and others). We have amazing discussions in the comments section and would love for you to join in. 🙂

Dear Society… Signed, Autism | Daniel Share-Strom | TEDxYorkUSalon

Daniel is a 26 year old man on the Autism spectrum. Like many of us, he “hates toothbrushes, loud noises, and brushing his hair.”

Autistic people are often summed up by the things that cause us problems. The world likes to focus on the negative aspects of Autism or the parts of Autism that make us different.

People with Autism grow up feeling broken and not believing in themselves – I know I’ve felt these things myself (although finding out I was Autistic helped me to accept myself more).

Awareness is not the same thing as understanding. Knowing Autism exists is not the same thing as understanding real Autistic people and their needs.

People are aware of the stigmas and the stereotypes without truly understanding us. Good intentions are great, but we need positive actions.

I can take NO credit for Daniel’s Ted Talk  below. It is amazing and shows great perspective.

How Autism ‘Awareness’ and the School System Failed My Brother and Me

Wow THIS article by Nora Burritt contributor to The Mighty is AMAZING!

I can take no credit for the article below, although so much of what Nora had to say could be my own words. The little girl below could easily have been me -or a million other invisible Autistic women.

There is a huge problem in the way Autism is treated and how women and girls are being missed . We really are invisible and grow up wondering why we always fall short of others expectations of us.

We wonder why we are not good enough. We wonder why we are different. Eventually when the pressure gets to be too much we implode and find ourselves staring down an official Autism diagnosis – despite all the signs being visible at childhood.

Boys are diagnosed as toddlers. Women are diagnosed in their 20’s and 30’s (or older). I know a woman who was diagnosed at 68. We NEED to do better. We owe it to our sisters and daughters.

There is a photo of me at 3 years old. I am standing in a meadow on the tips of my toes, arms scrunched up like a t-rex, hands blurred from excitedly flapping.“You were so cute!” my family members coo when they pass this photo. These are the same people who look at me and say, “You can’t be autistic, you’re a girl!”

I hit developmental milestones quite differently than others. For instance, I never learned to crawl forwards, I was speaking complete sentences at a year old and reading books by 3. I wasn’t potty trained until I was almost 4 and said to my mother, “I am finished with diapers,” and that was it. I would bolt and hide in clothing racks in stores and cry when my parents made me try something new.

Sensory wise, I was notoriously known for my aversion to dirt, anything soft, loud noises, flashing lights, and many other things. I walked on my tip-toes constantly, chewed apart all of my shirts and gel toys, rocked and spun enthusiastically. I struggled with math concepts to the point where I barely skimmed by. I used to cry constantly in preschool and elementary because I couldn’t regulate my sensory system or handle my surroundings. I was often in the principal’s office because teachers misunderstood me trying to comprehend with me being insubordinate. In middle school, when a psychologist brought up Asperger’s syndrome with my mother, she laughed and called him “crazy.”

See full article here.

Autism is not my disability.

Autism is not my disability, altough I truly believe that it is the root of all my “superpowers”.

My disability is invisible because I am able to blend in with society. People don’t know if I am suffering. When I speak up asking for help I am told that I am not “Autistic enough”.

Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function.

The disability is society’s misunderstanding of Autistic people.

Cure culture says erase the Autism. Neurodiversity begs you treat us with compassion, learn about us, and accept us as we are.

Autistic children are sent to therapy to help them look “less Autistic”. They learn to be still, and learn how different they are from everyone else.

We become self-conscious and learn that our differences are something to be ashamed of.

So no, I am not disabled. Society has unrealistic expectations.