TED Talk: "How autism freed me to be myself"

This is one of those great talks that transcends autism, and yet is so relevant to the conversation about autism. Rosie King has autism. Her brother and sister have autism. What she's asking is that we re-think what autism is and, more importantly, why "normal" is so important to so many of us.

"But if you think about it, what is normal? What does it mean? Imagine if that was the best compliment you ever received. 'Wow, you are really normal.'"

(Laughter)

Instead, she says, the "compliments are, 'you are extraordinary' or 'you step outside the box.' ... So if people want to be these things, why are so many people striving to be normal?"

I'm reminded of the excellent talks by Faith Jegede and Andrew Solomon.

Regardless of your connection to autism, this TED Talk is a clarion call to celebrate uniqueness. It's six minutes of awesome. Watch and share, please.

Is this how people see our children?

Go to a search engine (not Google*) and type, "Autistic people..." Look what appears:

Houston, we have a problem.

If you're a regular reader of this blog and you've noted that I'm writing more often about acceptance and the need to repudiate the pseudoscientific myths surrounding autism, now you know why. I don't want my child — or yours — to live in a world where they are defined by lies and falsehoods.

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* Google has changed how they handle auto-completion on autism-related search queries in part due to a flashmob protest. Good for them!

Remember this face

If you follow autism news, you're going to hear a lot about six-year-old London McCabe's parents in the coming days and weeks. London's mother threw him off an Oregon bridge yesterday; his body was recovered four hours later. (And, yes, you'll even hear some loons start quacking about vaccines.)

You are going to hear about how autism destroyed this family. You are going to hear about the broken system, the inadequate support services, the stress of dealing with multiple mental, physical, and financial crises.

In short, you are going to hear a lot of sympathy for London's parents, and a lot of demonizing of autism (and by correlation, those with autism).

What you won't hear a lot about is London himself, the little boy whom one family member described as "a good kid. He loved hats." You won't hear much about the child featured in this birthday video. You won't be able to read the blog post where his mom recounted how she rushed her husband to the emergency room, where nurses said "they couldn't believe London was severely autistic — he was so well-behaved," because her blog has been deleted. You may read his father's recent post in which he describes London as "pleased as punch (their family was reunited after a separation). He lays on our laps and puts our hands together. Last night he made the 'mmmwha!' sound and gave his Mommy a kiss. Then he made the same sound and pushed our faces together. He’s all smiles."

If and when you hear about all the difficulties and tragedies London's parents faced; when you read that autism is a monster and that London threw tantrums so loud his voice grew hoarse; when you hear from experts who claim parents of children with autism can't really be held accountable because of the stress of it all; I'd ask you to think about London.

Remember his face. He is the victim.

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Related: Gigi Jordan, a wealthy Manhattan entrepreneur, was found guilty of manslaughter yesterday in the death of her autistic son, Jude. This was so clearly a case of pre-mediated, cold-blooded murder it boggles my mind that she was given what is essentially a slap on the wrist. Not surprisingly, Jordan was part of the cure-at-all-costs community. It says something about how we, as a society, value those with disabilities.

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Update: November 18, 2014. Someone sent me this video of London visiting his father in the hospital. When the defense and the media spins the same narrative they always do — that autism is the monster that destroyed this family — remember this video.

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.

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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.