Autism 101: Hating Your Autistic Child

Yay for daddies who get it

Ray Hemachandra at Golden Moon Circles

My 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

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 Body and Brain Disconnect

Ive seen Emma and Ido’s take on this but here are some new ones 🙂

growingkidstherapy

I am part of a wonderful community of parents and practitioners of RPM. We chat, compare notes, commiserate, laugh, motivate, and learn from each other. Most of us have never met face to face (yet!). We have come together via the internet to blog, Facebook (is this now a verb?), skype, and email not only to learn but to share the words of individuals using RPM and encourage others to try this empowering method of education and communication. One of my favorite blogging duos is Lisa Reyes and her son, Philip, who write Faith, Hope and Love…With Autism. It has been a pleasure to get to know Lisa through her blog and our correspondence. Lisa is a great example of a parent who has worked patiently and persistently to support her son’s journey in RPM while guiding other parents! I could fill pages with the names, stories and leadership of…

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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!

Paying Attention While Autistic

Helpful information 🙂

A Father’s Powerful & Extremely Personal Thoughts on Parenting

“And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.”

Emma's Hope Book

*This was what my wonderful husband, Richard wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude”…

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The Importance of Play

Love this! I’m an adult and can barely handle a 40 hr work week without an outlet or a break to do whatever I want. But autistic 2,3,4 yr olds often have this much work a week or even more! Sometimes even are shamed or discouraged from doing the things they need or want to do to unwind when they get those tiny slivers of free time because it isn’t “normal” or “appropriate”. I encourage you to put yourself in your child’s shoes…preschoolers…or anyone for that matter should not be pulling 80 hr weeks…for any reason.

Musings of an Aspie

This morning as I was lying on the floor wrestling with my dog for her tennis ball–complete with fake growling on my part and some real growling on her part–I realized how important play is in my life.

Still. At the age of 45.

Since childhood, I’ve enjoyed playing board games and card games, solving puzzles and competing at (some) sports. Basically if there’s a game and I can potentially win at it, or at least enjoy trying, I’m there. But I’m also a huge fan of spontaneous, unstructured, completely pointless play.

Play in its purest form.

Play that arises in the moment and leads to unexpected, unbridled fun.

Which is probably why the assertion that autistic children don’t play “right” is so offensive to me. Why have autism researchers and therapists and clinicians forgotten the meaning of play? Worse, why are autistic kids so often described as not understanding…

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