Tag Archives: Autism

The Problem With Autism

The problem with autism isn’t autism. It’s a pervasive attitude handed down to the masses over generations. People tend to distrust what they do not understand and people are not always kind to those who stick out.

The bullying started early for me, with a teacher who’d decided that I was “too smart to act the way I did”. Society has ways of correcting people that it deems unfit. She picked on me openly in class, eventually, when the students joined in, there was nobody to stop them.

I’ve been called names – I had a list of ugly things people have called me here but decided to remove them and spare you.

We’ll just say that public school was a hostile environment, set up like a factory, made to churn out workers and catered to only one type of learning style. The inhospitable and overloading surroundings began to wear on me. I was physically ill, and my self-esteem was low. I felt worthless.

When the everyone around you is beating you down it is hard to know what you are capable of. It has taken time to get over those wounds but I still feel for that little girl and other kids like her.

As we mature, we can learn to push back against people, but the minds of growing children may be vulnerable when the abuse comes from adults. What if kids didn’t have to waste years recovering from the traumas of childhood?

What if autistic people all over the world were helped to focus on their strengths instead of being ostracized for their differences and weaknesses? What if we built these kids up instead of knocking them down over and over?

If the narrative around autism changed to one of true acceptance and kindness, would things be different? If we show people how to believe in themselves, will it make it easier for them to succeed?

The problem with autism isn’t autism. It’s society’s attitude that autism is wrong.

Meltdown Videos of Autistic Children – Awareness or Exploitation?

They’re not hard to find. You can dig them up on blogs, Youtube and even the news with a quick Google search – disturbing videos of autistic children in distress, while parents film.

Viral sympathy videos could quickly be viewed all over the world. Once a video is out there it is forever. The consequences of this are not always immediately aparent, but can be lifelong, impacting relationships with peers (kids are mean and bullies could easily use this footage), future employers, and others.

What is a meltdown? It looks a LOT like a tantrum, but there is a big difference. Tantrums are intended to manipulate a situation while meltdowns happen because of overload, often resulting in a loss of control for the autistic person. The brain has had too much, things have been building for a while and now the person in front of you can take no more – so they meltdown.

Like a volcano, the pressure must be released, in a rush of emotions and intensity. The brain is no longer able to process information and needs to reset. The types of interactions I see in these videos would not allow the needed reset to happen. When I was younger, being left alone in a quiet room was often the best way for me to recover – not much has changed through the years. This is NEVER what I see in these videos. The environment is always tense and overstimulating.

What do I see? I see a child in agony. I see a child overloaded. I see a child in extreme stress and it breaks my heart. Do you know what ELSE I often see in these videos? MOST of the time I see parents making the child’s distress and overload worse by touching, holding, and interacting with the child, essentially keeping the meltdown going by not allowing the child to calm down.

When are these videos appropriate? I understand that these videos can be useful for the diagnostic process as something shared with a medical provider but these videos should NEVER make it to the internet.

They do not raise awareness of autism. Most people think of this exact type of thing when they hear autism, it is why many adult autistics are dismissed.  The videos that I’ve seen were not created to raise awareness of autism, but to raise awareness of “the suffering of parents of autistic children” – at the expense of the autistic child in question.

We have strict laws, protecting the privacy of people’s medical information, but parents are allowed to ignore their child’s rights by sharing information and footage publicly,  without regards to the for potential harm in removing the child’s privacy and consent.

How is this legal? IS it legal? It shouldn’t be.

 

Autism, We Have a Problem – Let’s Talk about Stigma

We’ve got a problem. With the way autism is represented in the media.

 

Parents of autistic children are fed stories that “autism is a horrible tragedy that will destroy lives, families, & marriages”. Big organizations and people have made lots of money spreading this mis-information, drowning out autistic voices who speak up against them.

 

There is real damage done by well meaning parents, determined to rid their children of their autistic nature. Imagine if your parents were determined to reshape your entire identity because your natural way of being has been deemed “socially unacceptable”.

 

Autism is not a tragedy it is a difference, despite what most of the world has been led to believe. Autistic people are not broken or in need of fixing.

 

When parents get divorced, people tend to remind the children that it’s not their fault their parents are separating – because  this type of blame would not be good for a child’s mental health. How is blaming a child’s autism for running a marriage / family any different?


See the video HERE on YouTube.

A Long Love of Reading

IMG_5037I started reading and speaking at about the same time. Letters and words read to me by adults became a magical fixation. Entranced by their power, at the age of one and a half, I was determined to harness the pictures for the words that adults used.

The books had pictures and were made of cardboard. The best audio books came with cassette tapes and had a voice or beep that told you when to turn the page, allowing me to more easily follow along. Goodnight Moon was one of my favorites. I’d listen to the words, following along in my book.

Listen to a book, follow along, rewind, repeat. Over and over, memorizing the words. Each word a little picture. I was reading but not phonetically. Deciphering the code, little by little. I started with easy words like dog, cat, and god (sometimes mixing up dog & god).

To entertain myself in the car I would read and call out the letters and words on street signs. On one road trip just before my second birthday, as my mother reviewed directions on a large paper map, I suddenly became VERY excited and thrust my tiny finger enthusiastically onto the map. “Ping-Pong! Ping Pong!” I exclaimed, pointing to the small town of Ding-Dong, Texas.

Earlier in the day, I’d been watching Beanie & Cecil. In the episode, they had sailed to the island of “Ping-Pong” and shown the location on a map. I was very excited when I thought I’d found it.

Reading came easy for me and had a head start on the other kids when I started Pre-K. Unfortunately, by the time I got to first grade, I hit my first roadblock. Reading aloud, something I still avoid as much as possible.

We sat in a circle, textbooks open. “As we go around the room, everyone will read a IMG_1704paragraph. We will go around the circle until we finish the story.” My memory of that day is still remarkably clear. I will always be able to replay those events in my head.

I remember the teacher’s anger when I didn’t read my paragraph. I remember reading the words in my mind, screaming the words in my head, then begging the words to come out of my mouth. Nothing. I knew the words but couldn’t say them. I remember being sent out of class for refusing to participate in the activity and I remember being ashamed.

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In middle school reading was a solitary activity, allowing me to dig myself deep into the elaborate universes of Anne Rice, Bram Stoker, & Stephen King. In the eighth grade I devoured Interview With a Vampire, Dracula, and The Girl Who Loved Tom Gordon.

Throughout high school, I worked on writing. Listening to my favorite authors, making note of the writing styles and story patterns. Creating edgy teen vampire fiction, printed from an old Windows 95 computer. I placed the stories into brad folders before passing them along to my classmates.

 

As I’ve grown and changed, my love of reading has evolved. As a girl, I’d escape into fiction. In my late twenties, I started to find more value and joy in the accumulation of facts. There are still vivid pictures in my mind when I read, but now I’m visualizing real concepts, like human digestion and brain function.

 

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It’s fun to reflect back on my history of reading. To think that it all started on the laps of adults who cared enough to read to me, even before I could speak. How could my life have been different had I not received this type of encouragement? What would have happened if the people around me had cared less?

 

Many of my earliest memories involve books. I will always be grateful for those who nurtured my love of reading.