Loading...

Follow Left Brain Right Brain on Feedspot

Continue with Google
Continue with Facebook
or

Valid

The Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2019) has been introduced in the House of Representatives and the Senate. The existing Autism CARES Act will expire this year, so a new bill is needed to continue the work.

Autism CARES is good for the autism communities. Autism CARES continues the government’s focus on funding autism research and coordinating research with nongovernmental groups. This work has been ongoing since the Combating Autism Act was enacted in 2006.

The bill has yet to come up for a vote. It has been gaining sponsors (85 in the House and 22 in the Senate). My senators are not yet cosponsors of the bill, so I sent them messages urging them to do so. It’s easy. You can find your House representative here and your Senator here.

The text of the bill can be found in the link: H.R.1058 – Autism CARES Act of 2019. It’s basically a continuation and update of the existing bill–which as I noted above expires this year.

If you are wondering what the bill does, the current law states (among many other things):

The Director of NIH (in this section referred to as the “Director”) shall, subject to the availability of appropriations, expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism spectrum disorder, including basic and clinical research in fields including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology. Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.

The current law also authorizes appropriations. Which means Congress says they are allowed to set aside a lot of money ($190M) for autism research, but doesn’t force Congress to actually put that in the budget. Still, it’s a lot better than most of the disability or disease communities have as a commitment.

Let me put that another way–in legislative language Autism CARES is a single disease specific bill. Leave aside the term “disease”. It’s a bill that supports a single community. Congress has long been pushing to move away from that. Autism has kept this status even while Congress has moved to restrict it. The way to insure that we keep this in place is to act. Let your legislators know it is time to support Autism CARES.


By Matt Carey

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

A few years back the Age of Autism converted from a business to a nonprofit. That means we get some information on their financial status. As a nonprofit, their tax forms become public. Nonprofits file IRS form 990’s and those are hosted by various providers online.

The most recent informaiton we can get is for tax year 2018, according to this IRS website, the Age of Autism blog filed a “e-Postcard” instead of a form. Per the IRS this means they are receiving less than $50k in a year:

Organizations who have filed a 990-N (e-Postcard) annual electronic notice. Most small organizations that receive less than $50,000 fall into this category.

Here’s a screenshot from the IRS (click to enlarge):

So we don’t know how much they brought in, but it appears to be less than $50k. The thing is, the tax forms available for 2015 (here) and 2016 (here) showed AoA bringing in about $100k a year.

The natural questions are: is this drop in revenue real and, if so, why did it happen?

If one checks the Age of Autism blog today, one finds that there are three sponsors listed in a sidebar for the website. My recollection is that in the past sponsors paid about $15k per year. Here’s a screenshot, for some reason the actual icons for two of them don’t come through on my browser. (click to enlarge):

When I click on the icons I find that the three sponsors are (a) HealthChoice.org, (b) The Canary Party and (c) The Holland Center. HealthChoice and The Canary Party are, in my view, basically the same people. One listed as a political party and the other is a nonprofit. Both are run by Jennifer Larson and Mark Blaxill (Blaxill has been associated with the Age of Autism for many years). The Holland Center is a nonprofit run by Jennifer Larson, if memory serves.

Which is to say, the Age of Autism has basically one group of people sponsoring them.

Years back I once did a calculation of how much the Age of Autism brought in a year, and it worked out to about $100k/year, or a bit more. I’ll try to find that article. Back then they had more sponsors and also had advertisements

I checked some dates in the wayback machine (internet archive) and found that for the date I checked in 2016, AoA had 5 sponsors:

In

In 2015, they had 7 (some had larger icons, which may have meant higher paying sponsorship?):

Assuming $15k/year per sponsor, going from 7 to 3 sponsors could mean a loss of $60k in annual revenue.

Checking the wayback machine again, the ads were a significant source of revenue with this one type being $200/week. That seems like a lot more than I’d think they could pull in with ads.

I clicked a date in 2015 by random and there were 3 ads going on that day. That would mean possibly $600/week, $31,200/year.

One thing I find interesting in the list of sponsors is the lack of Generation Rescue as a sponsor. I recall that AoA started as the “Rescue Post“, “brought to you by Generation Rescue”. Perhaps Generation Rescue is supporting AoA in another way?

The tax forms tell us that Dan Olmsted was paid $26k in tax year 2015, and $39K in tax year 2016. Kim Rossi (then Kim Stagliano) has stated that she was hired by JB Handley (if memory serves) to work at the blog. A salary for her is not listed. There are entries for “contract services” in the amounts of $36k (2015) and $37,422 (2016). Some or all of that might have been to pay her for her efforts at the blog.

These are not high incomes. They are, however, incomes. People paid to, well, put out a junk blog that spreads misinformation about vaccines and stigmatizes autistics. Compared to my income from blogging (zero), these incomes are significant.

One must speculate as to why the Age of Autism blog may be losing revenue. My own speculations include:

1) Ad revenue down as blog lose traffic to Facebook and other social media.
2) Ad revenue down as even the credulous advertisers on AoA want less exposure to the clearly anti-vaccine message
3) Dan Olmsted, who passed away a few years ago, may just have been better at the business end. He could have been better at keeping sponsors and advertisers.
4) Some factionalization in the anti-vaccine/autism community. The current sponsors are all tied to Mark Blaxill, who is still listed as an editor of the Age of Autism blog.

There are probably other reasons, and it’s entirely possible the above reasons are minor or not applicable at all.

By Matt Carey

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

When Donald Trump was running for president (has he ever stopped running for president and started governing?) the anti-vaccine community threw full support behind him. They were excited because here was a candidate who publicly accepted and promoted the fake and damaging idea that vaccines cause autism.

Before running, Trump supported the idea that vaccines cause autism in twitter. During the campaign he stated his support for this failed idea clearly in a debate. So it’s no wonder that the anti-vaccine community backed him.

Then, a few weeks ago Trump said this, in response to the recent measles outbreak:

“They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots.”

That didn’t sit well with the various anti-vaccine groups. But allow me to take a moment to look at the viewpoint during the campaign. In specific, think about this–while campaigning did Donald Trump appear to be a candidate who would do well by the disability communities? Would someone like my kid benefit from a Trump presidency?

Clearly not. It’s not even a close question. And yet, even autism-parent anti-vaccine activists were pro Trump. Even though life would be harder for their kids after Trump. Even though there would be less support for their kids. Even though Trump would heighten stigma of disability.

One would think that parents of disabled children would run to vote for anyone else. Anyone who even paid lip service to supporting their children.

But the anti-vaccine autism parents didn’t. And I wasn’t surprised.

These are the same parents who:

chelated their kids (even though autism looks nothing like mercury intoxication, could cause harm and in at least one case did cause death)

dumped synthetic chemicals mislabeled as as “supplement” on their kids’ gluten free waffles.

promoted bleach enemas for “treating” autism

injected children with filtered urine

chemical castration of disabled children as a purported “cure”

The list goes on and on. But what do all of the above “therapies” have in common? OK, what do they have in common besides being bogus? They are all promoted by people who say vaccines cause autism.

So I wasn’t the least bit surprised that the anti-vaccine autism-parent community backed Trump. Not for a moment.

Remember back during the campaign when JB Handley (anti-vaccine activist founder of the Age of Autism blog) wrote Trumps Stands with my Son, I Stand with Trump

In it he stated:

But, I will make the point to you anyway: Donald Trump is the best thing that has happened to our kids in a very long time and I hope we can all lay down our issues and stand with him.

Because Handley is a “one issue voter” and that issue is the (failed) idea that vaccines cause autism

Did it matter that Trump had no plan for supporting people with disabilities?

Did it matter that Trump openly mocked people with disabilities?

Trump mocks reporter with disability - YouTube

Did it matter that Trump didn’t have the backbone to actually apologize for such a crude attack, stigmatizing disability?

Did it matter that Trump was pushing to remove the Affordable Care Act, which has allowed many autistics to get medical insurance? As part of that push Trump wanted to remove coverage for people with pre-existing conditions? One would think that pre-existing condition coverage would be a priority for Handley and the anti-vaccine community.

Did it matter that Trump was planning to gut funding for support services for people with disabilities?

Or, to put it simply, did the anti-vaccine community actually put people with disabilities in into their decision to support Trump? No. Not even close.

Trump said vaccines cause autism. And with that Trump got their vote.

Did Trump ever stand with any autistic? Anyone’s child? Anyone’s son? Nope. Trump stood with the anti-vaccine activists themselves.

And now Trump has abandoned them. It may only be for now. But the anti-vaccine community isn’t large enough and the sentiment against them is rising.

Here’s a response to Trump from Kim Rossi at the Age of Autism blog:

From an MSNBC report yesterday: President Donald Trump commented on the recent measles outbreaks, saying that people “have to get their shots” and called vaccinations “important.”

Will the First Lady share her children’s vaccination status, please? We would have like to have seen the Obama girls’ records too. No partisanship here at AofA. Both sides of a rotten apple with a pharma profit core.

Trump is now part of the “rotten apple with a Pharma profit core”.

No partisanship, eh Kim? I guess you finally realized that being a charity (the Age of Autism converted to a charity a few years ago–before the election) actually means having to follow the laws imposed on charities. Like abandoning the clear partisanship you showed in promoting Trump’s candidacy.

So Kim…JB…and the rest of you: Trump fooled you. Did you stop for a moment and think, “wow, I can be fooled. I wonder who else has fooled me in the past and who is still fooling me now?”

I doubt it. And that’s too bad. You all could do a lot to undo the harm you’ve caused.


By Matt Carey

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

A list I joined a long time ago is run by someone very active in the anti-vaccine/fake-cure movement. And every year I get sent the “inspirational” essay: Happy Mother’s Day: Mothers Lie. I truly dislike that essay.

I’ll put it below.

The short version of why I dislike this essay has to do with this one phrase:

You didn’t volunteer for this

Let me add another phrase from the essay:

You’re a woman who doesn’t have time to step back and put things in perspective

I’m a father, not a mother, but allow me to use my own experience. Having a disabled child has forced me to put things in perspective. It took years, and help from a lot of people. Shan, I’m thinking of you and other parents, but mostly from adult autistics.

So, with all that time and help, here’s my perspective for our family. The truth of the matter is we did volunteer for this. “This” as in: we decided to have a child. Perspective means I’ve stripped this down to the basics. We volunteered to have a child. And we were lucky enough to get a child. We are lucky enough that our child is alive. I’m lucky my wife survived pregnancy. I wanted a child I could love. I wanted a child I could try to help find their own identity, their own way, their own life. To help them pursue happiness, on their own terms.

Ms. Borgman, I appreciate what you were trying to do with this piece. I really do. But a lot of parents never get past the “what I hoped for was…” phase. Hitting mothers with this every year doesn’t really help. In the autism community we see parents who never accept who their child is, and focus on who their child was “supposed” to be. What the parents hoped for. They focus much of their energy in anti-vaccine action, because they are convinced that autism is “vaccine injury”. They become targets for charlatans selling all sorts of fake and even abusive “therapies”, because they want to “recover” their child. Note the term: recover. They aren’t trying to treat a condition, they are trying to regain what they feel they have lost.

Believe me, I am in awe of mothers. My wife especially. She had a better perspective on disability before we had children than I had even after our child was diagnosed.

It’s great to hope and dream. I’ve never stopped. But we need to ground our future parents before diagnoses as to what to expect. And that acceptance is a very valid option. That being the parent of a disabled child is more challenging, but it doesn’t require a super power.

In my opinion our culture needs to reassess how we view and discuss disability. And how we view the hopes and responsibilities of starting a family. Here’s a simple example of what I mean–I did a quick search on the site for the famous book “what to expect when you are expecting”. I used the term “disability”. Here’s what I got:

Here’s what I noticed–the first two hits are for (1) having a child while disabled and (2) disability insurance for maternity leave. Only when we get to (3) are we seeing disability for the child. And this is under “first year”. We really need to be educating people about disability before pregnancy. During pregnancy. You can’t fully prepare for the news that your child is disabled. But, then again, you can’t fully prepare for life with any child. What you can do is do some preparation.

You may be thinking that I’m saying “don’t encourage parents to hope.” Far from it. But hope and acceptance are both good things.

Another way to look at it is this. The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

Here are the sorts of corrections I’d suggest. First this phrase:

“Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.”

Perhaps this version wouldn’t change your story that much?

Every Mother wants a baby. Full stop. Remember that, you wanted a baby. You hoped that your baby would be able to see, hear, run, jump and fire neurons by the billions. But you knew that your child might be disabled.

I would change the last paragraph from:

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

to something like:

You weren’t fully prepared for this. You are the mother. You are an advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.
But, most of all, you are a mother.

Actually, I’d probably not use “you’re a wonder”, but I did say I am in awe of mothers. So there’s that. But the whole “you’re a wonder” message makes expectant parents think, “maybe I’m not up to the task.”

I don’t usually like it when people tell me how to write, or what to write about. I’m not suggesting you rewrite. But perhaps take a look at what these changes do to the message. Let’s move away from our society’s ideal that it is somehow romantic to look back on when we were naive and ignorant about our children possibly being disabled. That leads to regret and holding on to a feeling of loss. And that leads some parents into a very bad place. It keeps some parents from ever accepting their child’s disability. Perhaps you don’t know, but there is a segment of the autism parent community that thinks acceptance is a bad thing. Boggles the mind, but it’s true.

If nothing else, I can say that it would have helped me a great deal if we had changed the message long ago. Before I had kids.


By Matt Carey

here’s the essay:

Happy Mother’s Day: Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?

There’s no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling,
“Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.
You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Kathleen Kennedy Townsend, Joseph P. Kennedy II, Meave Kennedy McKean: thank you. We in the disability community owe much to the Kennedy family. We don’t forget the gains in special education and other areas that the Kennedy family championed for us.

With that in mind, it’s been especially hard to watch Robert Kennedy Jr. spread vaccine misinformation. More, it’s been painful to see him use my community, the autism community, as his base and his weapon in his campaign.

I know it took courage to step forward and speak out against the misinformation your family member, Robert Kennedy Jr, has been spreading. Thank you.

For readers who are unaware, members of the Kennedy family wrote a piece published on Politico:

RFK Jr. Is Our Brother and Uncle. He’s Tragically Wrong About Vaccines.

Here’s a paragraph:

These tragic numbers are caused by the growing fear and mistrust of vaccines—amplified by internet doomsayers. Robert F. Kennedy Jr.—Joe and Kathleen’s brother and Maeve’s uncle—is part of this campaign to attack the institutions committed to reducing the tragedy of preventable infectious diseases. He has helped to spread dangerous misinformation over social media and is complicit in sowing distrust of the science behind vaccines.

To the Kennedys: I am a father. I have an autistic child. Robert Kennedy positions himself as an ally, a champion of parents like myself. Let me make this clear: Robert Kennedy does not speak for me. He does not speak for more than a few autism parents. He certainly doesn’t speak my son or other autistics. He has been part of the effort to weaponize fear of disability to frighten people about vaccines. As such, he has added to the stigma my son faces.

There is another aspect to this you may not be aware of: the anti-vaccine community is closely tied to the worst in the alternative medicine movement. Robert Kennedy regularly speaks at autism parent conventions where therapies that can only be called abusive are promoted as “cures for vaccine injury”. Mr. Kennedy could speak out against these therapies. He could stand up and make himself heard and stop this abuse. Instead, he has remained silent.

In a few weeks, Mr. Kennedy will once again be speaking at the Autism One convention in Chicago. Here are some of the therapies that have been promoted at Autism One:

Chemical Castration. Mr. Kennedy’s allies in promoting the failed idea that mercury in vaccines cause autism promoted an idea that Lupron could help remove mercury from the brain, somehow treating autism. Lupron shuts down the body’s production of sex hormones. It’s basically chemical castration. (See Disability Scoop: Chemical Castration Drug Peddled As Autism Treatment). Chemical castration of disabled youth, how can anyone not see this as abuse?

Bleach Enemas. Sounds so ridiculous that it couldn’t be true, right? But there are people, presenting at the same place as Robert Kennedy Jr, claiming that a bleach solution, either as a drink or an enema, can cure autism. Somehow this treats vaccine injury, in their logic. Disabled children are exposed to enough of this bleach (Chlorine Dioxide) that they pass the lining of their intestines. These are called “worms”. It’s abuse.

Unregulated stem cell transplants. Parents have been flying their children to foreign countries to have “stem cell” infusions. This is nothing short of medical experimentation.

Chelation. Mr. Kennedy’s main theme for years involved mercury from vaccines. When my son was first diagnosed, one couldn’t get into an online autism discussion without chelation coming up. Autistic children were misdiagnosed with “mercury poisoning” by various, frankly fraudulent, tests. These tests were used to justify chelation, without the supervision of actual toxicologists. These children were never mercury intoxicated. Animal studies have shown that chelation, applied when there is no intoxication, causes cognitive decline. Think of that, disabled children may have lost cognitive gains because people believed Robert Kennedy’s message.

The list goes on and on. “Autism as Vaccine Injury” is used to sell all sorts of fake and, sometimes, abusive therapies. And no one in the anti-vaccine community, and that includes Robert Kennedy Jr., stand up to counter this movement. Instead they accept these charlatans and frauds as allies. As long as vaccines are blamed, charlatans know they can stand up in places like Autism One and not hear criticism.

Robert Kennedy could have slowed or stopped these abuses. He could have shown courage. Instead he’s been using my community as a weapon in his attack on vaccines.

To the Kennedy family: I know this is tough to read. Believe me, if anything, I’ve downplayed the harm the “vaccines cause autism” message has caused to my community. You are the people who might be able to get Robert Kennedy Jr. to stand up and start correcting the damage he’s help inflict.


By Matt Carey

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

–J.B. Handley. Founder of Generation Rescue and the Age of Autism Blog.
March 17, 2010

Kelli Ann Davis. Anyone remember that name? She was a spokesperson and political liaison (or something like that) for Generation Rescue back in the day. As in 10 years ago or so.

I’d be amazed if anyone actually remembered her name. It took me a while to remember her name, but I remembered her. She was a frequent commenter in online discussions on vaccines. News stories and blogs. She really liked to point out that there were pockets of under vaccinated people. Schools and communities with low vaccine uptakes. And there weren’t outbreaks of diseases. This, in her mind, seemed to be evidence that herd immunity was a fake idea. Worthy of scare quotes (“herd immunity”).

Here’s an example I dug up from the Age of Autism blog, circa 2009:

She stuck in my mind. She was so arrogant in her ignorance. So full of her self with her bad logic. And she was spreading misinformation.

I knew it was only a matter of time before the outbreaks did come. Before someone imported something like measles into one or more of these under-protected communities.

I won’t hold my breath waiting for her to come back and take responsibility. I won’t wait for Generation Rescue to accept its role in causing suffering. I won’t expect other purveyors of misinformation to show the backbone needed to admit a mistake.

I will admit I was wrong in one area–I worried that eventually the press would start to realize that a great deal of the misinformation campaign has been waged by a vocal minority of autism parents. That is why I remembered Kelli Ann. Not for the chance to one day say, “I told you so”. I knew that these outbreaks would come. The outbreaks would cause people to suffer, some to possibly endure lasting harm and, let’s hope this doesn’t happen, death. While slowing or blunting the harm from these inevitable outbreaks was a worthy goal in and of itself, I was worried that the autism community would take the blame for people like Kelli Ann. JB Handley. Jenny McCarthy.

I am grateful that this hasn’t happened. So far. But I also think it’s on us, autism parents, to call out the behavior of our own. We need to reduce the misinformation that comes from our community. Be it vaccine misinformation, disrespect of people with disabilities or spreading medical pseudoscience.


By Matt Carey

p.s. Yes, I realize that “anti-vaccination” and “misinformation source” are largely redundant.

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

When I first started looking online for autism information I was constantly hit with people using public data from California to try to convince me that vaccines cause autism. David Kirby was particularly effective at raising fear. Too bad he didn’t stick around and apologize, as the data now show he was clearly wrong.

Kirby was claiming that the rate of identified autism in California was going up, correlating with more mercury in vaccines. California removed mercury, and autism did not go down. It’s a great lesson. It’s easy to scare people, sell books, get fame. It takes a lot of guts to admit one was spectacularly wrong. Kirby chose the easy road.

That said, we still see armchair epidemiologists trying to make California autism data fit their pet theories. (Yes, SFASA, I’m thinking of you while I write this. But you aren’t the actual topic of today’s post). So I wasn’t surprised to see that people on Facebook were abusing California autism data to scare people about vaccines. You see California passed SB277 a few years ago, eliminating the personal belief exemption for vaccines. In other words, fewer people could opt out of vaccines for their kids. Kids entering preschool (age 3), grade 1 (age 5) and grade 7 (age 11) had to comply with the new law. The kids had to get up to date on vaccines.

Because of this, people are focusing on 3 year olds to see if the data from the California Department of Education indicates a jump in autism People are claiming that the number of 3 year olds in autism category climbed faster than did 4 year olds. And this, of course, means that SB277 caused more kids to get vaccinated and vaccines cause autism. Because everything means vaccines cause autism. (click to enlarge)

(Before one goes too far into this, SB277 doesn’t apply to special education students. So, those 3 year olds didn’t need catch up shots. But, don’t let important facts get in the way of claiming vaccines cause autism.)

When someone makes a claim like that the first thing I think is, how noisy are the data? The second thing I ask myself is, what are they not showing me. In this case, why did they tell us about 3, 4 and 5 year olds and then skip 6 and 7 year olds and show 8 year olds? What happened with those 6 and 7 year olds that they didn’t want me to see? For that matter, what happens with kids older than 8?

So I pulled the data and looked. And I made a table. Because listing these numbers like they did makes it hard to actually compare results. I don’t think they intentionally made it hard for people to compare. I just think they were sloppy. I strongly suspect they were trying to hide something, but not in failing to make a simple table. That all said, here are the number of students in the autism category by age for California in 2015 (pre SB277) and 2017 (post SB277). (click to enlarge)

In the Facebook post we were presented this question:

Other age groups increased 13-15%. What has happened to these poor 3-year olds?

But, we can clearly see that other age groups increased by numbers well outside that 13-15% range. For example, 6 year olds (remember how they just skipped that age group) saw an 18% increase. Not the 24% increase seen for 3 year olds, but a sizable increase. Which might have led a reader to ask, “hey, are these data just noisy?” And, “why didn’t you show me that data point?” Or, “what are you trying to hide?” or “Are you purposely cherry picking to make your point?” Or, “I’ll give you the benefit of doubt and assume you just don’t know what you are doing. Which, given that you believe vaccines cause autism is a very safe bet.”

Let’s keep digging. What does happen with, oh, 16 year olds? OH MY GOD! SB277 caused a huge 22% increase in autism in 16 year olds! That’s almost as big as for 3 year olds! Vaccines are to blame!

Of course, 16 year olds weren’t affected by SB277. They didn’t have to catch up on shots. In other words, there’s scatter in the data. It’s not “Other age groups increased 13-15%” as claimed. It’s “other groups increased between 6-22%.”

Remember how SB277 required older students to get catch-up shots? Like 5 year olds and 11 year olds? 5 year olds were what the Facebook poster used as their baseline, 13% increase. That’s actually below the average increase (which was 16%). How about those 11 year olds? 9% increase. Well below average. So, SB277 caused more autism in 3 year olds, but less in 5 and 11 year olds? Those kids were protected by catch up shots?

No. Let’s say it again–people are trying to put significance on noise. And I think they know it, that’s why they are not showing you all the data. That’s the polite way to say, I think they are trying to mislead you. Maybe they actually believe their claim and, you know, just don’t want you to be confused with all that data that conflicts with their claim. Maybe they believe vaccines cause autism because they have no real skill analyzing data and studies.

There are more important questions here. Questions that actually matter to the autism community.

Go through these data a few times and you should start asking yourself: why does the autism count increase for older kids? 13 year olds in 2015, there were 5874 counted as autistic. 2 years later (as 17 year olds) there were 6084. If autism is obvious, you can’t miss an autistic no way no how, how exactly did 200 or so more of these kids get counted as autistic?

Simple answer–many of these 200 kids were missed before. They were missed. They didn’t get supports and services based on their disability. And this shouldn’t happen. Autism counts, like these, aren’t an accurate count of the real number of autistics in a population. But the fact that autism counts aren’t accurate doesn’t play into the epidemic playbook. This isn’t just a problem for the anti-vaccine community. Yes, they’ve never cared about actually helping autistics. But consider SFASA (San Francisco chapter of the Autism Society of America). That’s a group whose purpose it is to serve autistics. All autistics. No matter whether they have intellectual disability or not. No matter whether they are identified or not. But SFASA denies that autistics have been missed in the past.

Ah, I digress. Back to double checking the anti-vaccine activist claims. So, 3 year olds across the state saw a big jump in the autism count from 2015 to 2017, right? If this is real, then the jump would have to be seen in various locations across the state too, right? For example, in Los Angeles Unified School District (largest in the state), we’d see the same result, right? Simple test. Let’s do it.

LA Unified counted 737 3 year olds as autistic in 2015. They counted 783 as autistic in 2017. That’s a 6% increase. That’s a lot less than the 24% statewide. So if we take the theory that “SB277 caused a jump in autism across the state” then in LA Unified, SB277 is preventing autism!

The anti-vaccine movement has always taken just the data that supports their theory and ignored the rest. They have also always used fear. This is just another small chapter in that story.


By Matt Carey

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
Left Brain Right Brain by Sullivan (matt Carey) - 1M ago

I accept that people are different.

I accept that different doesn’t greater or less. Just different.

I accept that all people need support in life.

I accept that some people need more support in life than others.

I accept that some people need a lot more support in life than others.

I accept that people who need a lot of support are different. Not less.

I accept that people have inalienable rights.

I accept that a person who needs a lot of support should not be denied their right to life.

I accept that a person who needs a lot of support should not be denied their right to liberty.

I accept that a person who needs a lot of support should not be denied their right to pursue happiness.

I accept that even though these rights are inalienable, they have historically been denied to people with disabilities. And that this is wrong.

I accept that even though these rights are inalienable, they were hard fought. For everyone. And the fight continues, especially for people with disabilities.

I accept that all people deserve respect.

I accept that people with disabilities are often denied basic levels of respect. And this is wrong.

I accept that people with disabilities grow and develop. Accepting disability doesn’t mean accepting stasis.

I accept that happiness is defined by the individual.

I accept that one can be disabled and happy.

I accept that lack of disability doesn’t guarantee happiness.

I accept that my role as a parent is to help my child achieve happiness as best as we can. On my child’s terms.

I accept that my role is not changed due to my child’s disability.

I accept that my responsibility as a parent does not over ride my child’s rights.

I accept that people with disabilities can seek to eliminate their disability. If that is their wish.

I accept that society often fails to accept people with disabilities, and this lack of acceptance can coerce people with disabilities to seek cures.

I accept that nothing is as defining of “self” as much as how one thinks.

I accept that autism at its root involves how a person thinks and perceives the world.

I accept that autism involves both disability and identity to a greater level than many disabilities.

I accept that achieving happiness is more difficult for people with disabilities than for those without.

I accept that my child has a right to privacy.

I accept that protecting my child’s privacy is a greater responsibility due to disability. That I can not use my child’s disability as an excuse to circumvent privacy.

I accept that my role is to identify my child’s advocacy and be the voice that amplifies my child’s advocacy.

I accept that no one achieves everything they advocate for.

I accept that even though it is easy to say “father knows best”, when it comes to their happiness, my child knows best.

I accept that not all parents or autistics accept what I do.

I accept that my own beliefs have evolved over time and will continue to do so.

I accept that I am far from perfect and that I will sometimes fail to keep to all the principles I have accepted.

By Matt Carey

This is a partial list and is subject to additions and revisions.

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 
Left Brain Right Brain by Sullivan (matt Carey) - 1M ago

We are often told to be “aware” of autism. But what does that do, really? With awareness comes acceptance. And for my son acceptance means being able to live his life.

A few years ago, I took my son for a walk to our local shopping center. We have done this every weekend day since he was in a stroller. This time we passed Nicco’s hardware store, where they always keep a stock of the American flags my son likes to buy. When they see us pass, they often start a fresh batch of the free popcorn he loves.

At the donut store, Mary and Monica helped him learn to buy things and to wait his turn. We’ve been doing this for years, but they never lose enthusiasm. At the bagel store my son walked right up to the counter as where Sylvia handed him his favorite cinnamon raisin bagel with her traditional “this is for you!” To this day, the workers at the bagel store hand him a bagel with a smile as he walks in. He eats while we wait in line to pay.

At our local market, I got distracted, as parents are wont to do. And my son wandered off, as children are wont to do. I ran to the door panicked because I had to make sure he was safe from traffic. Once I was pretty sure he was still in the store, I ran from aisle to aisle, yelling his name. Still scared. And what I found was a neighbor smiling at me, pointing and saying, “he’s over there”.

She knew us. She was aware that he needed support. When she saw him alone, she kept an eye on him.

He was 7 years old then. He’s 14 now. He still needs a lot of support, and always will.

When my father was growing up, people like my son would be institutionalized. When I was growing up, people with disabilities were hidden. Now that my son is growing up, he lives in a time and a community in which people are aware that he needs support. They accept him and know he deserves respect.

Awareness means my son can be in a community. Acceptance means he can live his life.

With a Perspective, this is Matt Carey.

The above was given as part of the Perspectives program on KQED radio. The original, complete with audio, can be found on the KQED website at What Autism Awareness Means

This is what I presented last year on KQED Radio, and I posted here on LBRB shortly after that. I present it again as we reach another Autism Awareness Day and month.

Read Full Article
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Kim Rossi runs the blog “the Age of Autism”. She’s a parent of three autistic kids. In the past, AoA was managed by someone without any real connection to the autism community: Dan Olmsted. Sadly, Mr. Olmsted passed away (I very much disagree with what Mr. Olmsted did but I never wished him personal ill). So now Kim is in charge.

Many years ago I emailed Kim to propose that we start promoting some stories in parallel. That we find some stories that are important to all in the autism community and start getting some sort of unity in publicizing and advocating on those topics. Ms. Rossi was polite, but it was clear that this wasn’t going to happen. People told me that the primary (by far) focus of Ms. Rossi and the AoA blog was their vaccine stance (they are against vaccines. Yeah, Kim, I know you try to dance around that, but it’s true.). Then they promote bad “medical” approaches to “treating” autism. Yes, Kim, I’m thinking of the example where you sprinkled a novel, synthetic compound mislabeled and sold as a “supplement” on your kids’ food. Then comes attacking actual experts and expertise in areas like medicine, science and the like. Actual advocacy for autistic people is far down on your list.

But I look back on that and I think, you had at least enough advocacy that I thought you were actually interested in it.

No way in Hades I’d make that mistake now. I recently checked in on your blog and I was surprised to see how much worse it’s gotten. I decided to wait until I saw something that actually amounted to advocacy. It was a long wait.

Today you have two articles. One on the suicide of a Sandy Hook parent. It amounts to “Our lives as autism parents are so hard we might commit suicide too.”

The next one is about an autistic adult who was removed from his family in the UK. Actual autism advocacy. You copied the first 5 paragraphs of a news story and gave a link to the story. Your title? First focus “Secret Court”. Well, you tried. A little.

Below is a list of your recent articles. I went back until there was something like autism advocacy.

The world could be a little better for autistic people had you focused your advocacy on actual autism advocacy. Instead you became an anti-vaccine activist. You’ve failed your community. Hard.

Titles of recent AoA articles.

Father of Child Killed at Sandy Hook Commits Suicide in Newtown CT

Secret Court Hearing Takes Son with Autism Away from UK Mother

Women Demand Action from FDA About Breast Implant Danger

What Really Happened In Connecticut? Yale Bailed & Vaccine Knowledge Censorship Continues

Who Are the Anti-Vaxxers?

How Can Brown Injure You? UPS and Merck Want to Bring Vaxes to Your Door

Letter to the Presidents of The Church of Jesus Christ of Latter-day Saints about Vaccination Choice

Common Sense in the Commonwealth of Kentucky’s Governor’s Home: Chicken Pox Once and Done

Student Paper: Vaccinate by Choice, Not by Force

Free Speech YouTubers Noticing Crack Down on Vaccination Topic

The Aspirin a Day Science is Unsettled and on St. Joseph’s Day No Less!

Yale Bailed! Expert Panel Reneges on Vaccine Mandate Debate with Robert Kennedy Jr

An article giving away a book that was donated to your site: “Outsmarting Autism, Updated and Expanded Build Healthy Foundations for Communication, Socialization, and Behavior at All Ages” (almost actually advocacy).

If Teen Consents to Vaccination without Parental Approval Who is Liable in Case of Injury

Robert Kennedy Jr Hosts Press Conference in CT “Should Vaccines Be Mandated?”

Special Education Taking Over in England (nearly on topic. Except your focus is on using the story to support for your failed epidemic idea, rather than actually advocating for better special ed).

Laura Hayes on PRN Radio Monday 3/18

On Vaccines: Our Legislators Don’t Know Vaccines

“Protocol 007”: Merck Scientists Accuse Company of Mumps Vaccine Fraud that May Be Endangering Public Health Today

Lawsuit Claimed Merck Overstated Mumps Vaccine Effectiveness: US Military Preparedness Takes The Hit

You Say Paro-TIE-tis, I Say Paro-Tee-tis Let’s Call the Whole Thing Mumps

#UsToo Open Letter to Washington State Legislators About SB5841 Removal of Vaccine Exemptions

Tesla Uses Merck Whistleblower Punishment Playbook: “Destroy Them Where They Live”

GMOs, Vaccines, Choice, and Informed Consent

Vexed by the Vaxxed: How Measles Is Smarter Than Your Average Bear

Action Alert: CA Senator Schiff Attacking Internet Free Speech

The New Irish Famine: Help for Students with Autism and Their Schools


By Matt Carey

Read Full Article

Read for later

Articles marked as Favorite are saved for later viewing.
close
  • Show original
  • .
  • Share
  • .
  • Favorite
  • .
  • Email
  • .
  • Add Tags 

Separate tags by commas
To access this feature, please upgrade your account.
Start your free month
Free Preview