Gratitude

I have not always been the most grateful person. In fact, when I used to hear people talk about how gratitude was a gift, I thought they were being a bit disingenuous.

Then, over the span of a few years, a lot of stuff went wrong. I lost dear friends and family, both to untimely deaths and departures. C developed serious health issues, and developmental issues followed soon after. My career was foundering, and financial worries came along for the ride.

But then. Nestled in among the bad stuff was a lot of great stuff. Some of it was new, a lot of it was old, things I just hadn’t noticed before. (Maybe because, you know, I wasn’t looking for it.)

A good portion of my cynicism faded away. My sense of outrage mellowed. I realized that, compared to most people on this small rock, I’m doing pretty damn great, even after taking the bad stuff into consideration. When I looked at it that way, I realized I’m a pretty lucky guy.

So I’m grateful.

Life isn’t meant to be easy or fair. It’s not necessarily meant to be anything, in my opinion. It is, as they say, what you make of it.

So I’m trying to make mine a life of gratitude. (Wish me luck.)

Oh, and Happy Thanksgiving!

What I’ve been reading – November 2014

Here are some things I’ve read this past month that I found helpful, informative, or inspiring. If you like this and find it helpful, please share with others. Thanks!

Divisions in the autism community. The tragic murder of little London McCabe this month has sparked a lot of discussion about how autism is represented in the media and elsewhere. In a Facebook post which argues that divisiveness in the autism community might actually be a good thing, the always excellent Invisible Strings writes, "Today, thanks in large part to the internet and social media, autistics are contributing their own perspectives. Turns out: we have a slightly different view of things. We don't want to be hidden away or eradicated. We want respect.” He goes on to write, "Negative views about autism are the norm...and for too long, they were the only view. Division means that new voices are being heard. This is good.” Read more.

Ido in Autismland: My Speech at the Autism Society Self Determination Conference. Ido shares a recent speech he gave. "I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.” Read more

Jerry Seinfeld and Autism. This month, Jerry Seinfeld said he has come to believe he is somewhere on the autism spectrum. Reactions to his comments ranged from supportive to outraged. John Elder Robinson, author of Look Me in the Eye, offered an interesting point of view, including this: "The 'my autism is worse than yours' is a counterproductive and destructive way of thinking. Look at depression and Robin Williams. He looked pretty successful and functional a few month back, didn’t he? But now he’s dead. None of us can know the struggles of another. There is no better and worse in autism’s affect.” Read more

Therapy for autism may alter brain activity, behavior. A preliminary study shows promise for Pivotal Response Therapy. "Following the treatment, seven children with autism showed enhanced activity in the medial prefrontal cortex — a brain region known to be involved in social cognition. By contrast, six untreated children with autism showed a slight decrease in brain activity in this region.” We’ve had positive experiences with this form of therapy for C. Note: this study is preliminary and small, and should be taken with a grain of salt until more studies and reviews can support its thesis. Read more

Rise in autism fueled mainly by diagnostic changes. Yet another study, this time out of Denmark, which suggests there is not really an “epidemic” of autism. This particular study, "published 3 November in JAMA Pediatrics suggests that up to 60 percent of the increase in autism prevalence in Denmark between 1980 and 2011 stemmed from diagnostic changes in that country.” The other 40% was attributed to greater general autism awareness. As for that so-called epidemic, the article notes that “…most people who talk about an ‘epidemic’ of autism in the U.S. are referring to a chart that maps the disorder’s dramatic rise after 1985. But many of them may not know that autism didn’t exist as a diagnosis until 1980. Before that, it was called childhood schizophrenia.” Read more

JRC Survivor Speaks Out (Part 1 of 4) "Hi, my name is Jennifer. I am diagnosed on the Autism Spectrum. Like so many of us, I have endured restraint, seclusion and aversives throughout my life, including seven years at the Judge Rotenberg Center. This is some of my story.” A four-part essay on the horrors inflicted to this date upon autistic individuals at the JRC. Start reading (part 1)

Naturopathy vs. Science: Autism Naturopaths are hopping on the "cure autism" bandwagon, supporting all manner of unproven, often dangerous and painful treatments. Read more

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.