Archive by Author

An autism parent’s gratitude to the Kennedys for speaking out

9 May

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

Today’s measles outbreak, brought to you by Generation Rescue and other anti-vaccine misinformation sources

1 May

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.

Oh no! SB277 is causing autism (except it isn’t)

1 May

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

Acceptance

9 Apr

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.

What Autism Awareness Means

3 Apr

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.

Kim, the Age of Autism has gotten worse under your leadership

26 Mar

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

Hey Amazon, here’s another autism-treatment book to consider delisting

15 Mar

As the parent of an autistic child, let me start by saying “Thank You, Amazon, for removing books with harmful fake autism treatments from your offerings.” Seriously. One great example is Kerri Rivera’s book on using bleach to “treat” autism.

For readers who don’t know about this, here’s an article on Disability Scoop: Amazon Yanks Books Touting Autism ‘Cures’.

That said, there are many more books that you should consider removing. One that comes to mind is The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention (Sears Parenting Library).

As of right now, still for sale on Amazon.com.

This is by Dr. Bob Sears. As part of the Sears family, he may seem to have some credibility. Or you just missed it.

Dr. Bob promotes chelation, among other dubious ‘treatments’. Here is but one paragraph from his book:

Here’s a page by the Mayo Clinic on autism and chelation. It starts with this line:

Chelation therapy is not an effective autism treatment, and it may be dangerous.

Among the other questionable therapies you can find in his book are antiviral treatments, hyperbaric oxygen therapy and IV immune globulins.

If you are serious about removing books that promote potentially dangerous therapies, consider removing this one.


By Matt Carey