What I've been reading - October 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. Warning: there's more than usual!

Oh, also, if you like this and find it helpful, please share with others. Thanks!

Opinions and insights

17 Wishes From an Adult With Autism. All great, but my favorite is number 13: "I wish for those who are on the spectrum and for those who love someone on the spectrum that you know we’re moving forward every single day." Read more

Diagnosis Day: Parent voices and the autism spectrum. From the always awesome Invisible Strings blog, parents share their advice for newbies to the world of autism parenting. Read part 1 and part 2

Stimming is not just a coping mechanism. "Stimming is a positive part of autistic experience, not an unfortunate-but-functionally-important thing we have to do." I love this. Read more

Active Acceptance: Why Does It Matter? "When you refuse to accept your child for who they are, when you care more about your child acting 'normal' than about your child’s health and well-being, when you subject your child to trauma inducing therapies in a futile effort to change their neurotype, when you fall for the lie that says that there is a 'normal kid' inside your child under the Autism and if you just fight hard enough you can 'rescue' them—when you fight against Autism, all you’re really doing is fighting against your child." Yes. Read more

These Are My 3 A's of Autism. Good advice. Read more

Neurodiversity: Some Basic Terms & Definitions. "Has autism" or "autistic"? A helpful guide. Read more

in common. Great post. "...if we dismiss the voices of the people who happen to have words to describe what our kids don’t yet (simply because they have words to describe it), we toss the greatest resource we have into the wind." Read more

Dr. Jonine Biesman: Avoiding Crises Through Respectful Parenting. "We talked with Dr. Biesman about best practices for parents who need help understanding and parenting kids with aggressive or self-injurious behaviors, about presuming competence in children who need communication support, and about the potentially dangerous costs of parent-enforced compliance" Read more

Truth and Consequences – The Anti-Vaccination Movement Exacts a Price. The lengths one mom will go to cure her son, trusting strangers on the Internet rather than credentialed professionals. She quite literally turned her child into a human guinea pig for every new fad treatment she came across. "The 'treatments' inflicted on Saul are very painful to read. Mary joined numerous autism 'biomedical treatment' yahoo groups. She is presently a member of all the groups in the box, see below, and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing 'gross medical misjudgment.'" This is sickening and frustrating, and all-too-common. Read more

Study: You Can't Change an Anti-Vaxxer's Mind It's so tiresome to have to keep going over the thoroughly debunked myth that vaccines cause autism, but the reason we have to go over it is because the message just isn't getting through. In fact, as a recent study notes, talking about it might actually be backfiring, and policy changes might be more effective. Read more

Science

Autism symptoms occur independently in general population. The more I've learned about autism, the more it seems like the symptoms we associate with it are actually just more intense, more clustered attributes we all share. Nice to see the science is beginning to support this notion. Read more

Scientists Implicate More Than 100 Genes In Causing Autism. This could be big. Why? Michael Ronemus, a researcher at Cold Spring Harbor Laboratory, quoted from the article: "If we have better genetic screening when a child is diagnosed with autism, we might be able to say here is the behavioral intervention they need. We already know that if you intervene early on, you can produce a more optimal outcome. Read more

Massive sequencing studies reveal key autism genes. Another biggie: "Analyzing the sequences of more than 20,000 people, researchers have unearthed the largest and most robust list of autism genes so far, they reported today in Nature." Moreover, "The two lists (of genes) share only ten genes, but overall the genes point to two key functions: communication between neuronal junctions, or synapses, and control of gene structure and expression. The latter, virtually unheard of in autism five years ago, is emerging as the strongest pathway involved in the disorder." (Emphasis mine) Read more

There is No 'Healthy' Microbiome. Not an autism article, but of interest to anyone pursuing a so-called "healthy gut microbiome," including those pursuing biomed treatments for autism. Read more

A Brain-Training Update. We've all seen those online ads for "brain training," or ways to make your brain healthier through online tests, games, etc. There's a lot of hype, not a lot of science, and so this article might be of interest who are looking into such things to help with autism. Basically, anything you do that involves "working" your brain is as good as these tools, so save your money. Or, as the author puts it, "Just do something, do lots of things, and keep it fun and convenient." Read more

Method reveals thin insulation on neurons in autism brains. More on neurons and myelin. Fascinating stuff. Read more

News

'Too many suffer in silence': Why we urgently need to talk about autism and girls. If you read as much about autism as I do, it's easy to think it affects boys almost exclusively. And then you see that, in reality, it doesn't. This is something that need to change. Read more

'Mother warrior lied over MMR 'vaccine injury.' File this under unprecedented, unexpected, and fascinating. "An English judge has ruled that a leading campaigner for disgraced former doctor Andrew Wakefield concocted claims of damage from immunization." For example, "She also now complained that - from the time of his vaccination - 'M' had suffered from 'autistic enterocolitis.' This is a novel condition, not accepted by medical opinion, masterfully discovered by Wakefield for the (long-since-failed) lawsuit, that cost the taxpayer £26.2 million in payments to lawyers and doctors, of which he got more than £435,000. For ten years, the boy suffered a 'severe gut disorder,' 'E' said, although nowhere could the court find any record of such a problem, and the Royal Free only noted constipation." Read part 1 and part 2

Jude Mirra’s mother takes the stand in murder case The tragic and infuriating murder of a young boy with autism unfolds in a courtroom, but there is a lesson here, if we choose to heed it. "How much did the false hope sold by charlatans play into this murder? We may never know. Jude died in 2010 at age 8. He grew up during the height of the 'better dead than autistic' rhetoric." In other words, telling someone (as we were once told by a so-called DAN! doctor) that their child can be autism-free is not only misleading, it could lead to a sense of failure that results in tragedy. Read more

Mother who tried to kill her autistic daughter sentenced: 10 to 22 years. "We can have the discussion of how difficult it is to be a parent. How difficult it is to be the parent of a disabled child. That conversation must start with the challenges and needs of the child. And what greater responsibility do we have than to protect our children’s lives?" Read more

"My body is not my own"

C gets up every night, 2-4 am, stimming, and comes into our bed. My wife is often able to calm him, which usually takes an hour or so. I trundle off to the boys’ room to get what sleep is left to be had.

Monday night C was even more out of control than usual. I ended up taking him to the living room around 3 am because his whirling dervishness resulted in several accidental kicks to my wife’s head.

I laid next to him on the couch, swaddling him in a blanket to soothe his proprioceptive issues. Once swaddled, it was actually easy to talk with him, more so than usual; he was lucid and responsive.

At one point, I asked him what was going on, why he couldn’t calm down. He said — in his typically poetic if literal way — “My body is not my own.”

“My body is not my own.” I had to think on that.

Probing a little more, I was able to tease out of him that his brain is “tired,” but his arms and legs won’t let him sleep.

“You can’t control them?”

“They won’t stop moving.”

"Do you want to sleep?"

"Yes," said without hesitation.

...

C finally crashed at 5 am for 45 minutes, though I never did. But I did learn something: while it’s easy for me to be frustrated with him in these moments, he can’t help it. In fact, it’s not even his choice; he wants to sleep, desperately so it seems.

Will this give me more empathy the next time his middle-of-the-night stims are this extreme? I don’t know, but I hope so.

Prime people

Here's a guest post from my wife, related to last week's Prime time post.

I was with C at an autism-friendly screening of The Lion King. In the back of the program was a photo accopmanying an article on the young actor playing the lead in The Curious Incident Of the Dog in the Night Time.

I said, "Look, there's a play about a boy who loves prime numbers as much as you do."

C smiled, then said, "But everyone loves prime numbers."

I said, "No. Not everyone loves prime numbers. In fact, a lot of people have trouble remembering their prime numbers."

He looked at me like I had three heads. And even though three is prime, this did not make him happy. So I added, "Only this boy and you like prime numbers, which means you two must be very, very special people."

He seemed to like that. He looked at the photo in the program and touched the boy's face. He smiled and said, "This boy and I are prime people."

Prime time

C's latest obsession is prime numbers.

He carries on about them at length, so much so that I installed an app on my phone that is nothing but a long list of prime numbers. He scrolls up and down, scanning for the red dots that mark a prime number, bouncing with joy when he discovers a new one.

He tells us that "two" is his favorite prime number because it's the only even prime number. He informs us that prime numbers are only divisible by one and themselves (as if we weren’t the ones who explained that to him in the first place). He's just starting to understand what "divisible" even means: "Eight isn't prime because two and four go into it."

He quizzes us: "Is 35 prime?" We play the mark: "Why, yes! 35 is prime!" He squeals with delight: "NO! 35 is NOT prime! But 37 IS prime!" So proud to be schooling mom and dad.

Tonight I asked him which of his classmates is a prime number. This stumped him, so I explained that if they had a prime number of letters in their name, they were prime. We determined that he's the only prime number in his class, a fact that pleased him greatly.

I don't really know how he first heard about prime numbers, and I don't know what the allure is.

I do know he loves them, so I love them now, too.

...

My favorite prime number, in case you were wondering, is 67...and I don't really know why.

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