The double-edged sword of labels in the autistic world (reblog)

I dream of a world in which to say that one is Aspergian/autistic conjures up accurate imagery.

I long for a place and time in which someone can disclose their status and be met with acceptance, support, or even a neutral indifference.

I’d like to build a society in which the use of the “autistic” term does not ignite fear and apprehension.

I would love to see a culture in which to tell someone you’re on the spectrum doesn’t change the other person’s perception of you or how they treat you.  A world in which to say you’re autistic isn’t followed by being treated with skepticism or talked down to.

Source: The double-edged sword of labels in the autistic world

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How to Support People with Seizures | Purple Day 2017 (reblog)

Little Hux Tales

First of all, thank you for opening this post.

While followers of this blog might know I am autistic, you might not know I’ve had seizures for ten years as well. They developed long before we had an inkling that autism was a possibility, and I was diagnosed with non epileptic seizures. We now know that the mechanism of my seizures is linked to my inability to process emotions in a neurotypical way, and how my body deals with stress and meltdowns.

Unsure how to help people with seizures? No fear, I’m here.

  1. Ask and listen. We know our seizures intimately and can share with you a wealth of information about our own experiences. Ask about their triggers and ask about when to call emergency services – ambulances are expensive and often unnecessary. My line is call an ambulance for me if I’ve clearly injured my head. For epileptic people…

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My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child (reblog)

Interesting read.

This brings us to the third point which is that she cares about observational behavior, or how similar to neurotypical it is, and ignores health. Because focusing on observational behavior in the moment and ignoring energy levels and a long term perspective on health means that my kid’s health will suffer.

As a consequence of not paying attention to health, she doesn’t acknowledge symptoms of stress, and instead she’s prone to explaining most problems with a lack of motivation. When an autistic kid is dead tired on a Monday morning and crying because the demand of brushing teeth and putting on clothes is too high, she explains this with that he or she (no other genders exist to her) isn’t being challenged enough. No matter how much information I’ve given her that explains that this can happen when the weekend has been too energy consuming, she doesn’t really believe me.

Source: My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child

Sleepy time?

When I got home from the hospital ten years ago, I told my parents I wanted something natural to help me sleep. They spoke with their trusted pharmacist, a lady who often fully urges her customer base to try these methods first. She recommended they buy a product containing l-tryptophan, melatonin, valerian root and chamomile. They did, and I took this each night the rest of that summer. It worked. 

Off and on for a few years I would buy a bottle of valerian root pills and they worked. As I sunk further into alcoholism and alcohol began to significantly worsen my insomnia, I began buying both valerian root pills and melatonin pills and taking them together to sleep every night. It worked for some time and kept my nightly drinking down to a just somewhat more than moderate amount. After some time I found myself needing more melatonin and valerian to do this. And after some more time it got to where only drinking until I had no choice but to go to bed “worked”. Even after this level was reached, for a long time it was still such that if I stepped back from drinking for a short period of even a few days things like valerian would begin working again.

However somewhere in the last year it got to a point where even stepping back from alcohol would not allow valerian and/or melatonin to work in me. I decided recently to give up drinking for good and am well approaching a week without thus far, but I had been fretting wondering how long it would be before I could figure out what would help me sleep/valerian could work again. 

Last night my friend I’m staying with got home from the grocery store and among his purchases was a bag of whole valerian root. Now I had had the pills and the valerian-containing teas, but I had never even seen the whole root itself. Well when I went to bed last night I broke off a small piece of the root to chew. 

I was amazed how well chewing the root worked at making my mind calm down and making me sleepy. I drifted off to sleep. This morning I am amazed and pleased with how soundly I slept and what a low level of anxiety I awoke with. Hello, valerian, my old friend. I may never go back to the capsules/tea again. 

why i #BoycottAutismSpeaks (reblog)

why i #BoycottAutismSpeaks (reblog)

Powerful.

a diary of a mom

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{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping…

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