What I’ve been reading – August 2014

2014-08-29-c-sky@2x Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Opinions and insights

The Problem With Functioning Labels An excellent post detailing the fundamental flaws with functioning labels. "High and low functioning labels are at best pointless and at worst costly red herrings distracting us from what’s important... acknowledging that every autistic person is an individual with their own set of strengths and challenges, and getting them the support they need to deal with both." Read more

The Seduction of "Recovery" The opening line sums it up: "Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of 'recovery.'" A thoughtful exposition on the folly of seeking recovery for a child with autism. Read more

An Open Letter to Richard Dawkins Dawkins recently tweeted that the moral thing to do would be to terminate a pregnancy if it was determined the child had Downs Syndrome. Ido in Autismland responds: "I am sure my family has struggled because of my disability. I have too, more than you can understand, but despite my disability, I am sure my life is purposeful and I hope I am making this world a little better." Read more

Resources

My Child / All About Me Handbooks: Every child with Autism is different With school starting soon (or now!), I found this helpful handbook that parents can download and fill out with details about their child. The goal is to help teachers understand the unique characteristics of each of their incoming students. Read more

Science

Guest blog: London as a crucible for autism in the 1950s An absolutely fascinating look into the history of autism diagnosis, where a few dedicated researchers changed the course of autism history forever. (Note: add this to the pile of research contradicting the claim that autism is a new phenomenon.) Read more

The Nine Points Related to the article above, here are The Nine Points Mildred Creak and her working group helped establish as a preliminary but common and fundamental set of criteria for an autism diagnosis. It's a testament to the quality of the work that these Nine Points are so close to what is used today as diagnostic criteria. Read more

Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities That whole CDC whistleblower story that got the antivax crowd in a lather? Bogus from top to bottom with a lot of shady doings by, yes, Andrew Wakefield and Brian Hooker. Too much to write here, but this is an excellent recap. Read more

Oxytocin Isn't Lacking In Children With Autism, Researchers Say You may have heard that Oxytocin could be critical in helping people with autism. This large-scale study indicates that it doesn't look like the panacea some hoped for: "'Our data blew that out of the water,' says Karen Parker, a Stanford researcher involved in the most rigorous study yet of autism and oxytocin levels." Read more

Since bleach wasn’t enough, let’s start adding hydrochloric acid to MMS? The incredibly dangerous biomed treatment, Miracle Mineral Solution, is back with a new brand and formulation. Catering to the "cure" crowd, this snakeoil promises to clean the toxins that cause autism. As this article notes, parents who use MMS even post "pictures of the intestinal linings of their disabled kids, passed with the help of MMS enemas. They caption these pictures with statements about how MMS killed 'worms.'" Sadly, MMS is popular enough to be sold at the annual Autism One conference run by Jenny McCarthy's autism pseudoscience organization, Generation Rescue. Read more

"Quiet, please."

2014-08-17-marinepark@2x There we were, standing on a platform that jutted out into the middle of the Marine Park marshlands in Brooklyn, when C said, "I need privacy. Can I have quiet, please?"

If you know C, you know how rare it is for him to ask for something so directly, so clearly, let alone string together two unique but related requests.

2014-08-18-c-sitting

He repeated his plea: "Can I have quiet?"

"You want us to go away?"

"Yes. I want privacy."

Faced with such an unequivocal demand, what else could we do but grant the request?

So the three of us walked back up the path and, from some distance, watched C sit quietly, by himself, in the middle of so much...silence.

And there he remained, at peace, for a surprisingly long time.

What I’ve been reading – July 2014

2014-07-31-c-water@2x Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Parenting

How I Learned to Accept My Son’s Quirky Obsession. I've written in the past about how C's obsessions often end up being a great way to connect with him, despite the fact that some professionals warn against encouraging them. After trying to stem his son's obsession with Sesame Street, this ASD dad now accepts and encourages it. Besides creating a deeper bond, he and his son now have entirely new ways to engage and play. Read more

Why I Best Remember This Moment. File this under important to remember. The mother of a girl with Down syndrome weighs the good against the bad. "Then I have to remember that the bad is just life. The bad moments have a purpose. The bad make the good that much better." Read more

Parenting an Autistic Child. The autism journey is framed as one of tragedy and heartbreak, where the child (with autism) is the cause of all that suffering. But what is the effect of that message on the child? "The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem." As my views on autism evolve, posts like this help me see a new way forward. Read more

Opinions

Stop Using my Children to Scare Parents out of Vaccinating. This post pretty much sums up my opinion of the anti-vaccination movement, particularly in terms of how they view autism and children like my son. As the author writes, "Vaccines are blamed for everything from common skin rashes to the Sandy Hook school shooting. But the big thing, every time on every group or thread, is autism. Autism is a scourge. Autism is a tragedy. Autism is taking our children away. My autistic child is damaged, I was told, and vaccines are to blame. The more I read, the angrier I became...As an autism parent, it offends me my children’s condition is being used to scare people away from life-saving medicine. I don’t want that to happen. It angers me that there are people out there who truly think my children and others like them would be better off dead than just a little different." Read more

Science

New Study: Most genetic risk for autism resides with common variation. A fascinating, important, large-scale study published in a well-respected science journal, the result of which is the identification of a series of genes that are likely involved in autism (not one single 'magic bullet' gene, as has been speculated). Moreover these genes are very common in the general population, but when occurring in significant enough numbers in any given individual, increase the risk of autism. Read more

No, autism in Scandinavia isn’t rare and “high functioning” A common trope among the anti-vaccination crowd is that autism barely exists in Scandinavian countries. A large-scale study debunks that myth. Read more

Quiet

I've written about this before, recently even. But it's worth repeating.

There's a different C that most people don't see, and this is the C who comes out when it's quiet. I mean, really quiet. And not just when it's quiet, but when we're quiet.

Instead of unresponsiveness, C answers. Instead of silly talk, he is frank and funny, and sometimes poetic. For example, just after I took the photo above I asked him what he was doing (he was so intent and still, very unusual for him), and he said, "I'm listening to the quiet."

Quiet. It's hard to come by. But it's worth it when you can find it.