What I’ve been reading – September 2014

C using his iPad

Here are some things I’ve read this past month that I found helpful, informative, or inspiring.

Tip

The Underwear Rule. Due to their vulnerability, children with disabilities including autism are three times more likely to be victims of sexual abuse. The Underwear Rule is a set of five easy-to-remember tips for parents and children to help prevent such abuse. Read more

Science

Autism Prevalence Unchanged in 20 Years. We keep hearing about an epidemic, and I keep saying, “there is no epidemic.” Nice to see in-depth, large-scale research supports my contention. As the author notes, “This latest study showing a stable autism prevalence between 1990 and 2010 is in line with a consilience of scientific evidence showing that autism is mostly genetic, has its onset prenataly, and that the apparent increase in prevalence is largely due to diagnostic substitution, increased surveillance, greater acceptance, and broadening of the diagnostic criteria.” Read more

Brains of children with autism teem with surplus synapses. There is a some debate on this topic, but a few post-mortem studies seem to confirm that in at least some autism cases, there is a statistically significant surplus in synapses. In this particular study, “Sulzer and his colleagues began by examining postmortem brain tissue from 20 children, half of whom had been diagnosed with an autism spectrum disorder. In line with other studies, they found that the brains of children and adolescents with autism have a higher density of dendritic spines than controls do.” (Note: some biomed folks will tell you it’s a case of inflammation not surplus, but this is a distortion of the actual science.) Read more

10 Weirdest Things Linked To Autism. A list of bizarre things people once thought caused autism (and in some cases, still do). Read more

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The brave one

Today begins the second week of kindergarten for C, and the first day of his new bus route.

He’s an old hand at this: he started riding a school bus at three. But unlike his old bus ride, this route traverses two NYC boroughs and is one hour and forty-five minutes in length.

A neighbor later said, “You guys are so brave to put him on a bus with total strangers for such a long ride. I don’t know if I could do that.” I thought of how difficult it can be for C to express his needs or fears; I remembered how the school bus carrying my friend’s child went missing for two-and-a-half hours last week; I imagined C sitting on this bus with people he didn’t know and couldn’t really communicate with, and my blood ran cold again.

As I walked away, I remembered C peering out the window after I put him on the bus, how a small smile crossed his face as he saw me wave at him, and I realized he’s the brave one, not me.

A talk that changed my perspective

The period after C’s autism diagnosis was troublesome: I experienced emotions ranging from grief to confusion, anger to denial. Most of all, I felt an overwhelming sense of loss. A few months later, though, I came across Faith Jegede’s TED talk, “What I’ve learned from my autistic brothers.”

After watching this brief video, I hit replay two more times — something I rarely do (who has time?). Something in her words kept tugging at me.

And there it was, this idea, so simply stated: “Everyone’s got a gift inside of us, and in all honesty, the pursuit of normality is the ultimate sacrifice of potential. The chance for greatness, for progress and for change dies the moment we try to be like someone else.”

I’ve watched this talk many times since, and when things are especially difficult, I reflect on this passage in particular: “…beyond the tantrums and the frustration and the never-ending hyperactivity was something really unique: a pure and innocent nature, a boy who saw the world without prejudice, a human who had never lied. Extraordinary.”

Extraordinary indeed.

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.