Tag 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.

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 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.

Huffington Post says: Autism Is Really a Super Power

I love beautiful stories, and always feel the need to share when they come across my news feed.

A parent is awakened by the wise words of an Aspie.

“Why can’t you just accept us the way we are? We are not trying to talk you into thinking like us. Or seeing the world like we do. We are not saying your way of thinking and acting is bad. We accept you. So tell me, why can’t you just accept us?”

Perhaps, it is not the “Aspies” who need the healing. Perhaps our children with the autistic label are really here to teach us to stop trying to change people and to just love them.

Read more in the full article by Jema Anderson here.

Autism is Really a Super Power originally appeared on GypsyJema.

 

The Economist – Dealing with Autism -Beautiful Mind Wasted

How not to squander the potential of autistic people. 

This article, although it reads as quite cold and is definitely not from the perspective of an Aspie,  it brings up a good point and talks about problems Autistic people face in schools and the work place.

Autism is a condition that defies simple generalisations. Except one: the potential of far too many autistic people is being squandered. Although around half of those with autism are of average intelligence or above, they do far worse than they should at school and at work. In France, almost 90% of autistic children attend primary school, but only 1% make it to high school. Figures from America, which works harder to include autistic pupils, suggest that less than half graduate from high school. In Britain, only 12% of higher-functioning autistic adults work full time. Globally, the United Nations reckons that 80% of those with autism are not in the workforce.

Original article  by on The Economist

E is for Eugenics — The Bullshit Fairy

As I scrolled through my news feed, the following post stopped me in my tracks.

E is for Eugenics [Autism Acceptance Month] Eugenics, in this context, is the deliberate research into the identification of genetic markers for autism with the goal of prevention, as it is seen by those who participate, to be a genetic defect and undesirable trait. Autism Speaks says they are “dedicated to funding global biomedical research […]

via E is for Eugenics — The Bullshit Fairy

Danya20: “Different, Not Less” — Danya Blog

I’m always on the lookout for good blogs in my news feed. Here is another one. 🙂

Dr. Temple Grandin, animal behavior expert and author of The Autistic Brain, once stated, “I am different, not less.” Danya International has believed in this sentiment from our very beginning. Many of the Small Business Innovation Research (SBIR) grants that we received throughout our early years focused on how to help facilitate inclusion and communication […]

via Danya20: “Different, Not Less” — Danya Blog

Being Anonymously Autistic

Growing up undiagnosed, I’ve already been anonymous for my entire life.

Wondering why I could not seem to be like everyone else my entire life was painful, however discovering my Autism has provided me with answers and allowed me to have compassion for myself like never before.

I spent my life trying to be like “them” – normal people, only to find that most of the time I either excel beyond what “they” were capable of or fail completely, depending on my level of dedication and focus. There is no middle ground with me.

This world was not built for me. Tormented by florescent light bulbs and  humming air conditioners, meaningless social gestures, and people who can’t just say what they really mean.

Neurotypicals, the majority of the world’s population, built this world. Adapting to  “their” ways is hard but it is in my best interest.

I work to fit in. It takes up a lot of my energy. “Normal People” out number us Aspies, but we are out there hiding in the crowd.

Now that I know Autism so intimately, I can pick other Aspies out in a room.We share some silent connection. There is often a nod and a smile. I wonder if the person in front of me is aware of what I can see in them, but out of respect I say nothing.

Discovering that I was Autistic was both freeing and painful. I went through a depression followed by a  roller coaster of emotions as the shock kicked in.

Suddenly all the times when my best had not been good enough were forgivable. The poor little girl inside me was finally embraced.

My childhood had been hard. I did not deserve all of the suffering I went through, but maybe I needed to endure it. All the bullies and villains in my life have helped to make me stronger and wiser, giving me a thick skin that an easy childhood would not have grown.

Unfortunately, it seems to be extremely common for kids on the spectrum to be bullied.

With our without a diagnosis, people seam to be able to “sniff out” our Autism, although they do not know what to call it. They call us weird, awkward, or strange. We are obviously different with our eccentric ways and erratic body movements and alternate communications styles.

Autistic children learn to blend in to avoid being picked on – or at least that’s how it was for me growing up. It is almost instinctual for an Aspie to “chameleon” into society if they grow up diagnosed.

Even now, my instinct still tells me to remain Anonymously Autistic.

“Girls with Autism; flying under the radar” – a new mini guide for schools and child based services. — Barry Carpenter Education

The following was in my news feed today, and as a girl who was missed the title of the original blog post stooped me in my tracks. Please be sure to visit the original poster for more information.

 

To mark World Autism Awareness Day, nasen has launched a new mini – guide highlighting the needs of girls with , or without a diagnosis of Autism. Written by Jo Egerton and Barry Carpenter, with contributions from the Girls with ASC Working Party, the guide is a free download to schools and services. The guide […]

via “Girls with Autism; flying under the radar” – a new mini guide for schools and child based services. — Barry Carpenter Education