Autism 101: Hating Your Autistic Child

Yay for daddies who get it

Ray Hemachandra @ Golden Moon Circles

My son Nicholas, October 2014My son Nicholas yesterday, October 2014

Full title and full disclosure: Autism 101: hating your autistic child … and teaching her or him self-loathing.

Twice in the past week I’ve seen “I love my child, but I hate autism” posts by parents of autistics. One was written by a real-life friend I respect greatly, and one was by a Facebook friend I’ve never met.

It’s not that this language is rare. Somewhat shockingly to me, despite much good work by many autistic adults and autism professionals, it is a language still common to many of the largest autism organizations and associations. It is a language still common to many autism parents. It is a language still common to media and general society.

It is, indeed, a language and idea most common and base.

Most times I wince, shudder, and keep moving, because it happens so often and it is so heartbreaking…

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room to heal

Well said

a diary of a mom

I was asked to write something for the I Am Not Kelli Stapleton flash blog. The purpose of the flash blog is to stand together in support of the premise that disabled lives matter.

And so I wrote.

I cried as I typed.

I hated what I’d written.

I began again.

And then yet again still.

Until, one word at a time, I deleted it all.

Because it simply didn’t feel right.

Finally, after days of typing and deleting, I’ve decided that this is what, and all, I want to say.

I don’t want to talk about this anymore. I just don’t. It hurts too much.

It hurts me, it hurts you, it hurts our community and most of all, it hurts the beautiful girl in the center of it all, Issy.

Issy deserves to be able to move on in as much peace as one can after such horror.


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The Importance of the Pasta on the Left

There are a lot of things I don’t “get” but given a choice between flushing a toilet a few times or the alternative if its denied…sometimes ya just gotta roll with it.

Musings of an Aspie

I was in the cereal aisle in Target, waiting for The Scientist to decide on his cereal purchase, when I overheard this exchange between a mother and her preteen son:

Mother: “James, come and let’s pick out some cereal.”

James (appears from around the corner): “But I haven’t finished looking at all the pasta. I looked at the pasta on the right but I didn’t look at the pasta on the left.”

Mother: “We need to pick out your cereal.”

James (sounding panicked, voice rapidly rising into hysteria): “But I need to look at all the pasta! I haven’t looked at the pasta on the left. I need–“

Mother: “Okay, you can finish looking at the pasta if you promise to come right back here when you’re done and pick out your cereal.”

James: “I promise.” (dashes off around the corner then returns a minute later)

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#VectorsofAutism: The Live-tweet Storified

You…yes you…go check it out!

Thirty Days of Autism

Yesterday Laura and friends live-tweeted Vectors of Autism: A documentary about Laura Nagle which can currently be viewed online here.

It was spectacularly well-received and created such a wonderful feeling of community. We were tweeting and connecting well before the 5:00pm PDT start time and long after the 39 minute film had been screened.

It was fun – and this was a real-life real-time echoing of exactly the thing that Laura talks about in the film when she describes twitter, phone in hand:

“I love Twitter. Right here at my fingertips is access to a virtual world in which people who are very diffuse – because there are not that many of us in any part of society – but here we are, hundreds of us… in the palm of my hand. And we.. we’re having different lives, but along various similar themes. And of course this is also…

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The unrecovered

This is why I fight so hard against “passing” goals for my kids. I’ve read the same story far to many times to count, of the long term damage done to autistic people under the guise of “helping”.

Chavisory's Notebook

I have had a lot of reaction in the past few days to that New York Times Magazine article concerning “The Kids Who Beat Autism.” Here’s about all I have left.

The parents, the teachers, the therapists and researchers without a clue who are celebrating “recovery” because they have, in their heads, defined autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.

-Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a sexual abuse rate of over 90%, no thanks to the compliance training that teaches that allowing others to control our bodies is desirable behavior.

-Are not the…

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redrawing the map

We are constantly redrawing our map as there are new places to see and new pitfalls to avoid. Why redraw the map constantly? Think of it this way…if you were to embark on a new journey do you think it would be wiser to consult a map made by people hundreds or thousands of miles away, by looking at satellite photos years ago?…or do you think it would be more helpful to get your information from the locals…those who travel the roads every day their entire lives, who know that certain roads are impassable during a storm, or a tree has fallen in the way on another…the people who know every twist and turn because it affects them on a daily basis? Autistic people know this journey, other parents, drs, and therapists only know what they observe from the outside…and just as one guide could not possibly know an entire journey across the country, if you put enough together, each helping navigate their own piece of the journey, you can go a long way!

a diary of a mom

Editor’s note: Many of my autistic friends, especially women, were diagnosed as adults. There are myriad reasons for that, but they belong to another post. Nearly all of them were diagnosed with a patchwork of other conditions throughout childhood and into adulthood, none of which ever felt – or was – right. When the autism diagnosis came, it was, for many of them, revelatory. It was not, however, always so for their parents. This is for them. 

Oh, my Mama friend, I know.

Even though our experiences were different, I still know.

I know it’s hard to be hit with news that throws your world into a confusing, unsettling imbalance.

I know that it makes no sense at first, even while making all the sense in the world. I know that it’s far, far easier to imagine that life is still as you always thought it was than to…

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