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.



Voices for Vaccines: A Welcome Reality Check & Resource

Photo credit: CDC
Are you part of the pro-vaccine mega majority? Do you wonder why mini-minority groups who distrust vaccines get such outsized representation in the media and, occasionally, policy? Wondering what to do about it? The new org Voices for Vaccines (www.voicesforvaccines.org) is the place for you. The below is from their recent launch and conference call.

Who is Voices for Vaccines?

When stories are told about vaccines in the media, among decision makers, and between parents, the parent voice that often gets the most attention is the antivaccine voices. The antivaccine movement has been excellent at shaping their story and getting attention as a legitimate, equal “other side” opposed to public health officials and scientists.

However, the vast majority of parents, well over 90% of parents, happily vaccinate their children. If the vaccine story were told with actual equity, only 5% of the story would cover the movement against vaccines, and it would be shaped as a denialism of the science supporting vaccines.

Voices for Vaccines seeks to reclaim that appropriate balance and to help parents, providers, and community members speak up on behalf of vaccination. These provaccine voices are needed in places like Vermont, where a well-organized antivaccine movement defeated a bill last year to tighten the personal belief exemption that allows parents to opt out of vaccinating their children. We also need these voices in Oregon where legislators are trying to provide real, truthful information about vaccines to those parents seeking to opt out.

To help people advocate for immunization, Voices for Vaccines gets the tools needed into the hands of those everyday people who need them. Our website hosts our toolkits, which so far include “How to Write an OpEd for Publication.” We are also working on a toolkit that addresses vaccine hesitancy and a toolkit that childbirth educators, doulas, midwives, OBs, and the like could give to new parents to help prepare them for vaccinating their children. To support our efforts, we send out a monthly newsletter that directs people to action and gives them up-to-date information about vaccine advocacy. Lastly, our blog provides a place for everyday people to tell their stories. Our members blog about why they vaccinate, how they became provax, and how vaccine-preventable diseases have changed their lives.

How we came to Voices for Vaccines.

The act of writing brought Ashley Shelby and Karen Ernst into this world of vaccine advocacy. Minnesota’s personal belief exemption is one of the least restrictive in the country. A parent need only get a notarized form saying that they do not want to vaccinate, and they are exempted from vaccinating their children. Karen was trying to figure out a way to have this law changed when she found Ashley’s OpEd in the Minneapolis StarTribune about making it more difficult for parents to opt out of immunizations. After reading this article, Karen tracked down Ashley’s email address and convinced Ashley to meet her.

From there, Karen and Ashley went to serve on various Minnesota Department of Health committees and also founded the Moms Who Vax blog. Moms Who Vax was a success. Ashley wrote much about political and news events surrounding vaccines, while Karen tended to debunking things antivax celebrities said. And then other mothers began to join in. Chrissy wrote about her conversation from antivax to provax after realizing that vaccines had not caused her son’s autism. Tristen wrote about how her pediatrician was able to convince her to vaccinate her child against chicken pox. And Katie wrote about her surprise that the antivaccine movement even existed.

At that time, the Minnesota Department of Health sent us to the National Immunization Coalition Conference where we met Dr. Deborah Wexler of the Immunization Action Coalition. Dr. Wexler asked Ashley and Karen to head up Voices for Vaccines and create in it a parent-driven organization whose purpose was to allow everyone to advocate for vaccines.

Connecting bloggers and their audiences to Voices for Vaccines

Because of our experience with Moms Who Vax and our vision for Voices for Vaccines, we are hoping that bloggers can connect their readers to the world of advocating for vaccines and that Voices for Vaccines can be one of those tools. We notice a bump in our membership each time we are mentioned in a blog, and as our membership grows, so does our ability to organize the pro-vaccine
community and make sure the conversation and the laws about vaccines are accurate and smart.

If you do decide to write about us in your blog, please let us know at info@voicesforvaccines.org. We will help promote your blog. We can also send our members to your blog if the comment section of any vaccine-related post needs intelligent responses.

Issues and triumphs when blogging about vaccines

The final portion of the conference call was a discussion about various issues surrounding blogging about vaccines. The discussion touched on comment sections, tactics of the antivaccine
movement, and appropriate imagery. The following links were discussed:



Birth Mothering Shock & Processing

I have a new post up at BlogHer. Since I used up pretty much all my word power writing it, I'll just excerpt it here:
I don't write much about being a birth mother, as ceaseless hand-wringing over "does my birth son know he's adopted?" gets tedious if you're not actually inside my head. Also, my previous birth mother essay on BlogHer is, in hindsight, laced with bitterness and not entirely respectful to my birth son's adoptive family. So I've been in a holding pattern: maintaining my distance, monitoring my birth son's public information because what else have I got, and trying to wean myself from a lingering hope that, as he's now legally an adult, he might contact me.

Then I found an essay he wrote for his local newspaper in which he defended his (adoptive) cultural and racial identity, and which made me realize he likely was never told about being adopted. And that made me heartsick -- not only because of the likelihood that I may never exist for him, but because he's probably been raised in ignorance of his genetic background. And that is not fair to him.
The comments are informative, supportive, and mostly great. It's worth reading just for them.

The post also talks about running away a few months after his birth, to live in Ghana. Here's a photo from that time. You can't quite tell, but I am sporting an anemic set of dreads (I didn't realize that my hair is not at all thick until just a few years ago). My Ghanaian friends thought my piddly little dreads were hilarious -- the thought of anyone intentionally letting their hair get matted was not popular in a country where people take pride in being well-groomed.

Makola Market 1990


Don't Use Words That Hurt, People

Today is Spread the Word to End the Word day -- meaning don't use the word "retard" as an insult or to describe something as less-than, no matter how casually or lightly. Here's what I had to say on the matter, with my characteristic delicacy, in Ellen Seidman's parenting column on Babble.com (thank you, Ellen):
"My son Leo has many challenges, but he has super-sonic hearing. And though he tends to stick to concrete matters when he speaks because speaking is hard work for him, he is an excellent listener. So if you use the word 'retard' as a slur and are around either one of us, then prepared to get schooled. Because Leo is not less of a person than you, is just as capable of being hurt by words as you—and as his mama-bear mama, I will sit you down and make you watch Jane Lynch's and Lauren Potter's Not Acceptable video until you beg for mercy. The word 'retard' hurts him, it hurts me, it just hurts. And you and your casual bigotry get no reprieve from me until you understand why."
And just in case you've not seen Lauren Potter's and Jane Lynch's Not Acceptable video, or could use a re-viewing, here 'tis. (But don't read the comments unless you are easily irked.)