1 in 50 Kids Have Autism: This Rate Does Not Mean What You Think It Means

By now I'm sure you've heard the new "1 in 50" CDC prevalence numbers for autism [link to Emily Willingham's excellent Forbes.com article]. What these numbers demonstrate is that under-diagnosis is the issue, rather than a significant increase in autism rates. And for those of you Silicon Valley locals who are thinking, "well, I didn't see these kids in my class when I was growing up," read on.

Anecdotes and personal experience are a good starting point for thinking about an issue, but when we're talking about a population it's important to look to the numbers over time, along with diagnostic criteria changes. Thirty years ago in the US, there was no such thing as an Asperger's diagnosis -- that wasn't part of the DSM until 1994.

We also need to consider that Silicon Valley is a different place than where many of us grew up. There are just more autistic kids here. And that's not surprising, given the increasing evidence that autism can have a significant genetic factor, and given how still-uncommon it is for any adult with Asperger's over 30 (i.e., many of our local engineers and scientists and innovators) to be diagnosed.

Most of the kids making up the new numbers can "pass" and so have been overlooked. Not all. Most. These kids may not need as much support as their more intensely autistic counterparts, but they do deserve accommodation so they can succeed both academically and emotionally.

The problem is that these kids have historically been more difficult to identify, and this slipperiness is part of the basis for the new DSM-5 diagnosis changes. "Passing" is especially true for autistic/Asperger's girls, who tend (though not always, mind you) to be rule followers and are often considered "good kids" by adults even as they struggle socially with their peers.

I'd recommend reading IACC member Matt Carey's post on the new numbers. He breaks down many of the factors that concern us all. Specifically:

"We (a society of autistic and non-autistic people) need to give autistics the tools and supports needed to succeed in this world, with various definitions of success. And we can’t do that if we don’t understand what is needed. 2% is a number that can grab people’s attention."

From: http://leftbrainrightbrain.co.uk/2013/03/25/autism-rate-2-what-now/

Warm regards. I'm off to hunt Easter Eggs with my kids. Leo's going to love it.

-Shannon

When Advocacy Means Taking It On the Chin

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

Thoughful Analysis of the No Link Between Autism & Vaccines Pediatrics Study

Emily Willingham, a scientist and autism parent (and, OK, the science editor for The Thinking Person's Guide to Autism) has analyzed the recent Pediatrics study that found no evidence of a link between autism & thimerosal/vaccine exposure:

http://daisymayfattypants.blogspot.com/2010/09/pediatrics-study-finds-no-link-between.html

It's worth your time - Emily breaks down not just why the study is comprehensive and inclusive in both approach and findings, but preempts potential criticism about conflicts of interest or conspiracy. She also highlights something I'd not read before: researchers have noted a *negative* association between thimerosal exposure and autism.

Thanks Emily!

Be the Best Fan Ever of The Thinking Person's Guide to Autism

Some of you have asked how you can help us promote The Thinking Person's Guide to Autism. Here are three simple actions:

1. Follow our Twitter stream at @thinkingautism and retweet our posts. We publish a new essay every weekday, between midnight and 3 AM PST.
2. Join the conversation: comment on our posts! We've had some great discussions, and look forward to more.
3. Visit our Facebook page.

You can also install "like" code for our Facebook page on your blog, as we have in this blog's right-hand sidebar.  Email us and we'll send you the code.

Thanks so much,

Shannon, Liz, Jen, & Emily
Editors, The Thinking Person's Guide to Autism

Autism and Exposure to Toxins

This is a belated, flat-out scrape from the amazing Emily Willingham, scientist and autism parent extraordinaire. Anyone whose ears pricked up and stomach started hurting upon seeing last month's NY Times headline "Do Toxins Cause Autism?" needs to read Emily's analysis of and personal insights on the matter. Here are some excerpts, to hook you, and to make you click through to the entire post:

"...it comes as no surprise to me that mainstream science is paying attention to this potential link between these exposures and autism. A handful of chemicals--not of the kind we're passively exposed to but of the kind we take therapeutically--have already been linked to autism. These include valproic acid, which also is an endocrine disruptor.

"What we need to be careful about is talking about any links as established before the work has even been done. Nicholas Kristof in The New York Times tries to make this argument, but I'd call it a big fail from the get-go, as the headline itself is a screaming warning of "Do Toxins Cause Autism"? Aren't we just now trying to recover from the leading headlines relating vaccines to autism?"

....

And as someone who has seen the power of these chemicals to alter vertebrate development, I can only tell you what I do now. I do not use cosmetics, and I do not use shampoos or soaps on my children that contain phthalates, tea tree oil, or lavender oil. We do not use plastics with bisphenol A. I am careful about my purchases of fish oils and other fat-related items, checking to see if the persistent organic pollutants have been removed. I almost never microwave in plastic.  [Emphasis mine -SR]