What I’ve been reading – September 2014

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

Are Children with Autism Better at Math? Although fMRI studies can be problematic, and this is a small study, early indicators suggest enhanced math skills in some people with autism may be due to brain wiring. “Our findings suggest that altered patterns of brain organization in areas typically devoted to face processing may underlie the ability of children with autism to develop specialized skills in numerical problem solving.” Read more

Opinions and insights

Imaginings – an insight in to my autistic mind. An autist describes the "movies" he creates in his mind, and ends with this wisdom: "Overall what I think this shows is that any autistic behaviour will have a meaning, and a purpose behind it — no matter how it might look to neuro-typical people.  Everybody has behaviours – they are part of the human condition – and often these can be incredibly beneficial to the person involved.  In the case of people who have autism, unless the person is hurting themselves or somebody else, they should just be left to get on with them – you never know what benefits they might bring." Read more

Amplify This: "Don't Murder Your Autistic Kids. Raising a child with any disability is hard, but it's not an excuse for murder. Nonetheless, the media often seem more sympathetic toward the parent who murders their child than they are toward the actual child. "Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't." Read more

What neurodiversity isn't. I love this piece so much. "Neurodiversity means changing the definition of success. It means prizing self-actualization over self-camouflage. It means accepting how integral autism is to one’s identity, one’s understanding of themselves and the world around them. Autism is a Pervasive development disorder — embracing it means understanding that there is no aspect of life that it does not touch. It is the filter through which one experiences and interacts with the world." Read more

Why I Don’t Care What Causes Autism. Because I'm fascinated by the science of autism (and the brain in general), I'm still very interested in how it comes to be. Nonetheless, like the author of this piece, I find many parents (especially with a newly diagnosed kid) can get swallowed up asking "why?" I get it, I was there, too. But now that I'm less worried about why, I'm a lot happier. Read more

Dear "Autism Parents." An adult autistic has some strong and insightful words of advice for parents of autistic children. Read more

This Is My Definition of Autism. A simple, almost poetic definition of autism. Read more

Autism, Parenting, and the Importance of Attitude. I have not always had a positive attitude in life, but somewhat ironically, all the health and developmental issues that have happened to my sons have actually made me a more grateful, reflective person. As Shannon Des Roches Rosa writes in this wonderful piece, "While all parents, of autistic children or otherwise, deserve the right to vent lest our heads and eyeballs explode (and then who would clean that up?), when it comes to complaining, I hope we can try to be dabblers, not devotees. And that, if things really do get too hard to bear, we can rely on communities secured by hard-won optimism to envelop us and hold us aloft, until we have the strength to strike out on our own again." Read more

News

Drexel's autism institute gets $3.6M gift. Nice. "Drexel University’s A.J. Drexel Autism Institute has received a $3.6 million grant from an anonymous donor. The money will be used by the institute’s life course outcomes research program for a series of initiatives focused on understanding and improving quality of life issues for people, at all ages, on the autism spectrum." Read more

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

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."

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.

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.