I Am Autism

Married, With Aspergers

You don’t know me.

You see me sit, rocking.
You hear me talk to myself,
Repeating phrases from the TV.
You watch my hands as they flap
And touch. Seemingly random,
My patterns escape your notice.

You don’t know me.

You see me on the edges,
Quiet, listening but not speaking.
You hear my outbursts:
Violent eruptions of sound and motion.
You note my non-compliance
With black marks in your ledgers.

You don’t know me.

You try to change me,
Remake me in your own image.
You teach me that I am broken.
You punish me for being myself.
You make me fearful and anxious,
Afraid to break your rules.
You drive me deep inside myself.

You don’t know me.

You don’t empathize with me.
You don’t learn about me.
You don’t try to understand me.
You fear me, hurt me, hate me.
You don’t love me: if you did,

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The Best, Most Perfect Metaphor Ever In The History of Ever (or at least in the admittedly short history of this blog)

Love this metaphor. A fun and informative and touching read.

Autism “experts”, please team up with AUTISTIC Experts. Imagine the possibilities!

I Know This Rose Will Open

So it’s like this.

You’re Hawaiian, but you’ve lived in Vermont for twenty years.  It was an involuntary move, but you’ve gotten used to Vermont and the cold winter and you can generally deal.  You’ve learned the culture, the roads, how to deal with the snow, how to dress in layers.  You can appreciate the foliage and the maple syrup. 

And then one day you’re taking a class and the professor is talking about Hawaii, and you’re all excited, because hey! You’re Hawaiian!  It never occurs to you that you might not be considered the foremost expert on Hawaii, because, well, it’s your identity, it’s your community, it is where you were born and raised.

And the professor says, “I hear that is your experience of Hawaii, but do you have any peer-reviewed studies to back it up?”

And a classmate says, “I have been seriously injured by Hawaii.  It’s…

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self-advocacy

IEP time – this is a must read (Love this!)

a diary of a mom

When I first started at this (whatever this may be) I noticed that Autistic people who fought for recognition, acceptance, and support for, well, Autistic people were most commonly referred to by others as self-advocates. So I followed suit. It seemed an appropriate designation as they are, I reasoned, advocates for themselves.

Later, as it has so many times throughout the years, my language evolved. A number of Autistic friends told me that they were not comfortable being called self-advocates, but instead identified as Autistic advocates, or, in some cases, as Autistic activists.

The difference, like so many others when we talk about the impact of language, was anything but semantic. A self-advocate is, as the name so clearly implies, someone who advocates only for him/herself. Thanks in large part to the intersectional nature of ANY effective advocacy movement, I have yet to meet a single Autistic advocate / activist who fights only for…

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untitled 

It really is just this simple.

a diary of a mom

Parenting can be hard.
.

Every kind of parenting.

The enormity of the responsibility can be downright terrifying at times and both the physical and emotional demands of the day-to-day can be completely overwhelming. I like to joke that it’s like the Peace Corps – the toughest job you’ll ever love.

Parents bitch about parenting. To spouses, to friends, to other parents. Because … see above. It’s big, hard, messy, scary stuff.

I had a friend who once wrote on her Facebook page, “My kingdom to be single with no responsibilities again. Someone book me a ticket to Fiji, STAT.”

Her son was only ten at the time that she wrote it. Two years later, the post popped up in her Time Hop. Her son, who now had his own Facebook account, came to her in tears. “Mom,” he said, “do you wish you didn’t have us?”

To be clear…

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