What I’ve been reading – August 2014

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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

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“Quiet, please.”

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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.

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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.

ASD Dad on Facebook

ASD Dad

ASD Dad now has a Facebook page. Why? Well, people have mentioned wanting to get regular updates without having to subscribe for emails or following me on Twitter.

If that’s you, just like my Facebook page. (Of course, you can still follow me on Twitter or sign up for email updates.)

Oh, and if you’re so inclined, I’d be very grateful if you’d share with others who might be interested.

Thanks for your support!

What I’ve been reading – July 2014

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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.

Thank you, Dr. Wing

When I first began researching autism, I came across the work of Dr. Lorna Wing, a true pioneer in the field of autism research and acceptance.

Dr. Wing was a female researcher and psychiatrist at a time when that was a rarity. She was a mom trying to deconstruct her daughter’s elusive condition. She resurfaced the work of Hans Asperger, and renamed “autistic psychopathy” as “Aspergers syndrome” for fear of what the earlier term might connote.

Dr. Wing was an early proponent of the notion that autism doesn’t necessarily equal intellectual impairment. And, she was at the forefront in arguing that autism is likely a cluster of underlying conditions with a common core of symptoms, not a singular condition, something many scientists are just now coming to understand.

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What I’ve been reading – June 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Bury My Son Before I Die. “I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.” Gut-wrenching and brutally honest. Read more

When You’re Gone: Practical Planning for Your Child’s Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they’re gone. Read more

The Obsessive Joy Of Autism. “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not ‘age-appropriate’, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.” Read more

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Father’s Day wish

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The thing I want most this Father’s Day won’t come from anyone but me: I’d like to be the dad I am on my best days (and in my better moments), not the one I am on my worst.