Autism, Children's Health, community, family, Mental Health, Parenting, Psychology

Sorry, But… (Not Sorry)…

…this post is going to be more serious than usual.

But it’s time.

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So, after years of struggling with the systems of public schools, healthcare, and supposed advocates for autism awareness, I’ve discovered something that simultaneously sheds a lot of light on this issue, and breaks my heart and makes me rage like a mother bear.

It turns out that bullying, while strongly discouraged, is not actually against the law in this country. (Well, that really explains things at all levels of society…) It also means that people who are supposedly protected under the law from discrimination, because we have a developmental disorder that results in challenges in daily life, still are forced to put up with a ridiculous amount of idiot behavior from intolerant jerks — and legally, we’re supposed to stand there and take it.

It is now more obvious to me than ever before that we do not live in a more advanced, more understanding, more accepting culture than we did 100, 50, or even 20 years ago. While science, technology, and how confusing instruction manuals are certainly are light years ahead from a century ago, it appears our mindsets, attitudes, and social perspectives are still in the sewers from ages past.

If we live in a world where we can cure diseases, predict natural disasters, communicate with people the other side of the globe with one mouse click — and still see anything that’s different from what we’re accustomed to as something that needs to be labeled a problem and eradicated from our presence… Then we haven’t learned anything about anything since the beginning of time.

My oldest son has autism. He didn’t ask for it, he probably wouldn’t have it if he had a choice. Recently I started the process of getting evaluated for autism spectrum disorders. My lifelong symptoms strongly indicate this is where I am, in medical terms. But the major reason he and I both have a problem with it is because of how the rest of the world treats us.

The world sees us as a diagnosis, a label, a set of complications to be tackled and removed. Not as actual, living, breathing, thinking, feeling human beings. How we see things and life, how we process experiences, how we view those around us, is as normal for us as how you live is normal for you. We are not a leaky faucet, a flat tire, a broken porch step that “just needs to be fixed and everything will be fine.”

Stop treating us like objective problems, and stop being so arrogant as to assume you can solve the situation by telling us to “be normal.” Quit thinking you’re better than us because your brain is wired in the “average” way. Shut up about what you think we should feel and say and do.

Changing medical technology and practice will only get us so far if the people administering or encouraging this treatment don’t change their ideas about why it’s necessary or not necessary. Enacting laws to protect someone’s physical and civil rights will only do so much unless employers, teachers, students, and other parents actually consider them valid and follow them. Those of us with autism don’t need more “neurotypical” people trying to establish regulations that may or may not help our educational progress — especially without consulting us as to what would actually help.

I live in an area where autism awareness is very low. Despite my son having had an IEP (or Individualized Educational Plan) since kindergarten, the number of teachers, students, and staff who still react with shock that he’s on the spectrum is disgustingly high. When he begins to have a sensory meltdown because of bullying (either by a peer or by an adult), he’s often ridiculed, “made an example” out of, or gossiped about. People are allowed to tell him he should be dead, or locked up in a psych ward, or hiding in the woods with the other animals (these are all true, tragically), and they face no consequences.

If there really is a God, and there really is a Heaven and a Hell, then, quite frankly, I know where I hope those people are going.

The only way we will prove that we humans truly have advanced, truly are a higher intellectual species, that we really are better than the aliens in far-off galaxies, is to decide that just because something or someone is different doesn’t mean it’s wrong. That when we’re presented with a person or situation that’s outside of our comfort zone, it means we need to expand our comfort zone. That when we encounter something we don’t understand yet, we start trying to understand it.

When we see autism as simply another facet of the human experience.

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9 thoughts on “Sorry, But… (Not Sorry)…”

  1. Well said. I have come to the dark conclusion that most Americans hate change. They hate the “other.” The want everything and everyone to be just like them. (scary thought) This “cloning” desire flares up everywhere: in small towns/neighborhoods where no one trusts the outsider or in upscale neighborhoods where every house looks just like the house next to it. Why and how this attitude has set in, I don’t know.

    It’s good to hear from you. Stay strong.

    I’m glad you posted these thoughts! Very true and needs to be heard. Good for you!

    Liked by 3 people

  2. Well written. We all have so much to learn and to try to understand. There are still so many who need to work on compassion also. It is so tough for people to not fall into the role of a victim but instead to be strong and to help people understand.

    Liked by 2 people

  3. Thank you for speaking out. I truly admire you for standing up for yourself and your son. Some people are so cruel, and narrow-minded. With your writing and fierce devotion to your son, you are proving that any person who has been labeled can rise above that label. I like you for exactly who you are. Just saying. 😊

    Liked by 2 people

  4. I agree 100% with Rachel. I like you just the way you are ❤ you and you're son are perfect and never need feel like you should be different because "society" has decided what is "normal." Those are the people that I myself look at with disgust. Their ignorance and rash behavior should never be tolerated. We're all different, get over it. This idea that some people are better than others because they are born different, or born with silver spoons in their mouths is outrageous. Any kind of discrimination is just ridiculous. We're above that guys, all of us.

    Liked by 2 people

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