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

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