Archive by Author

We needed the IACC in 2020. It’s past time to re-form it

13 Sep

The U.S. has a committee called the Interagency Autism Coordinating Committee. It’s mandated by law, a law that has been periodically renewed. Most recently as the Autism CARES Act of 2019, public law 116-60. Signed into law on Sept. 30, 2019, nearly a year ago.

I was a member of a previous incarnation of the IACC. The IACC is limited in what it can do, but there are areas where it is uniquely capable of action. Let’s use the pandemic as an example:

The IACC could bring together experts to share what is known about how the pandemic would affect the autism communities. What strategies work for remote learning for autistic students? What strategies might help for group homes where individuals are unable to get out into the community? What are the medical considerations of a disease like COVID-19 on autistic people?

The IACC brings in experts in each meeting to discuss topics of importance to the community. The topics above and more could be covered. Recommendations and information could be gathered and written into reports and web pages for members of the community to use.

The IACC also recommends research funding strategies. I am 100% certain that there is a lack of information on how the autism communities could best react to the pandemic. Right now is the time to focus research funding into how the pandemic is affecting autistic people and what works and what doesn’t. Because there will be another pandemic.

The last IACC term ended with the sunset of the previous Autism CARES Act, at the end of September in 2019.

In the best of times, there is no reason for the IACC to go through such a long hiatus. These are not the best of times. The IACC would have to meet remotely, but that is no reason to not form a new committee. The best work of the IACC is done outside of the meetings, gathering and reporting on research. We need that now.

By Matt Carey

So Anti Vaccine Crowd, how did that campaign for Trump thing work out for you?

12 Sep

In 2016 the anti vaccine community was very excited to have a candidate who lent them credibility. They always crave credibility and will latch on to anyone who does so. Think Robert Kennedy Jr., Del Bigtree, Andrew Wakefield, the whole raft of charlatans that any reasonable movement would cut loose. But in 2016 they had Donald Trump, who evolved from dark horse candidate to Republican nominee to president.

Donald Trump had tweeted the vaccines cause autism lie:

Trump lies about vaccines to get attention

Trump lies about vaccines to get attention

And had made other comments about autism and vaccines.

By this time most people understood Donald Trump. He’s a shameless self promoter who likes to take controversial positions to get attention (birther conspiracy, anyone? He even revisited birtherism with Kamala Harris).

Being a conspiracy theorist wouldn’t alienate Trump from the anti-vaccine community. Far from it. Just as they deny their own conspiracy theory roots, they will look past this in Trump. And being a loud mouth who is often wrong? Well, that sums up JB Handley to a T.

Trump flirted with the anti-vaccine movement and the anti-vaccine movement fell in love. JB Handley (anti-vaccine activist who uses his position as an autism parent in his campaign) wrote an article: Trumps Stands with my Son, I Stand with Trump with comments like “If ending the Autism epidemic is your top priority, how in the world can you vote Democrat? rel=’nofollow'”.

Let’s leave aside that the “autism is an epidemic caused by vaccines” is doubly wrong. Many of us responded at the time: if having respect for people with disabilities (such as your son, Brad) were any sort of priority, how could you vote for Trump? Trump clearly doesn’t respect people with disabilities. For example:

Why would an autism parent support this?

Why would an autism parent support this?

That said, JB Handley and many others in the anti-vaccine movement (including other autism parents) clearly don’t respect people with disabilities. Remember when Del Bigtree compared autistics to dogs and exotic chimpanzees while autism parents Mark Blaxill and Ginger Taylor laughed?

Many of us autism parents prioritize our kids and the autistic community in general. We feel that respect and rights for people with disabilities is a paramount issue. And Trump had no disability plans in his platform. But the anti-vaccine movement, even the autism parents, do not place such a high value on respect for people with disabilities. In fact, they disparage it as trying to “normalize” disability (I got a hint for you all–disability *is* a normal part of being human).

Here we are 4 years later. Donald Trump not only hasn’t taken up the anti vaccine banner, hasn’t taken up the “autism is a vaccine induced epidemic!” campaign, he’s now throwing money into the development of new vaccines and actively trying to get the vaccines to market before they can complete safety and efficacy testing.

Instead of “draining the swamp”, he’s pressuring the CDC and the FDA to become part of his political machine, where independent science isn’t reported but rather science-like support for Trump’s messaging are allowed.

The irony is thick. The anti-vaccine movement got the exact opposite of what they hoped for.

So I wonder what they are thinking now. How much do they know that they were played? And do they care that they were played?

I haven’t done much digging on this, but I did run across this from “you are so charming Del, I’ll laugh at your autistics-as-dogs remark” Ginger Taylor:

Yeah, she’s on to Trump. But she still backs him.

It’s rare for the anti-vaccine movement to admit even this much of a mistake (JB Handley, for example is very much in the Trump mold. Including the ‘never apologize, never admit mistakes’.)

I do wonder if somewhere, hidden from view, there have been discussions of “well, we were played by Trump” among the anti-vaccine community.


By Matt Carey

YouTube gives Del Bigtree the boot…about 4 years too late

4 Aug

Del Bigtree was a mediocrity who found he could gather a following (and make money) by joining the anti-vaccine bandwagon. He was a minor producer for the daytime TV show “The Doctors” before he quit to join Andrew Wakefield’s team creating the fake documentary “Vaxxed”. If you’ve forgotten Del (or never knew who he was), we discussed him and his efforts a great deal during time Vaxxed was being shown. Since then he’s grown his online presence, spreading conspiracy theories, anti-vaccine messages and general bad medical information.

For years Mr. Bigtree has supported demeaning messages about autistic people. For example, he likened autistic children to dogs or “exotic chimpanzees” (while anti vaccine activists Mark Blaxill and Ginger Taylor laughed). He never had the backbone to stand up to the people selling fake–and often abusive–autism “cures”.

He’s been a disaster or the autism communities. We are worse off for his attention.

But YouTube didn’t do anything about that. He was only damaging a small population.

Now we are in the world of COVID-19. A deadly disease. It should come as no surprise that Del moved into spreading misinformation about the pandemic. How better to grow his business? Gather donor/followers and make more money? And he has messages already prepared: fear vaccines, fear expert (except him*)

Yes, Mr. Bigtree has moved into giving people advice that COVID-19 is no problem. I’ve heard he went so far as to recommend people go out and get infected.

So, now Mr. Bigtree is a danger to the general population. To be more precise, he’s more of a danger. His anti-vaccine views have always posed a threat to the general population. But now the threat is immediate.

And now he’s off YouTube.

Mr Bigtree and his community are quick to claim that they suffer. Oh, let’s be honest, people like him love to be singled out. They love to claim that they are so important that the big powers are focused on them (why did it take so damned long if you are so important?). They love to play up the “I struggle to bring you the truth” message. In the end YouTube is a company, a company that both profited from Mr. Bigtree’s videos and (almost certainly) paid Mr. Bigtree based on views. YouTube was well within its rights to remove his misinformation. I’d argue strongly they had a duty to do so. YouTube shouldn’t be making money off efforts that lead to injury or death. They shouldn’t be paying someone to spread that information. And they have no obligation to provide Del Bigtree with a free platform to do so.

For those who have forgotten Mr. Bigtree (or never heard of him), he describes himself glowingly on his website. Here’s the final paragraph of his “Who is Del” blurb:

But Del is probably best known for his powerful speeches that weave shocking truth, searing wit and dynamic passion into an experience that is often described as electrifying.

Here is electrifying Del’s dynamic passion (or is it searing wit?):

By Matt Carey

* There are people who study medicine and infectious diseases. There are washed out musical theater actors (such as Mr Bigtree). The choice is obvious.

Has Generation Rescue disbanded?

3 Aug

It looks like Genertion Rescue has shut it’s doors. If so, make no mistake, this is a very good thing for autistic people and the autism communities.

Their website down. GenerationRescue.org. Follow the link. Or, take this screenshot:

Websites go down. But the GR website has been down for at least a week. And they haven’t posted to Facebook since May 2nd.

We’ve written extensively about Generation Rescue over the years here at Left Brain/Right Brain. GR was founded by JB Handley, now known as one of the main sources of vaccine misinformation.

GR is commonly known for their anti-vaccine stance. Within the autism communities they are known for their focus on denigrating autistic people in order to support the “parent first” narrative of autism as a source of despair. Also, they were known for promoting fake therapies such as chelation. They started out with the message that autism was a “misdiagnosis” for mercury poisoning. They were wrong. Very, very wrong.

But JB believed. He fell for the mercury poisoning lie hook, line and sinker. Generation Rescue’s first website included this quote:

“It is the elimination of this “spark”, i.e. mercury, for which we now have an easy and effective solution. Along with some supportive therapies, autism and certain other neurodegenerative diseases can be fully and permanently reversed. This is NOT a theory but rather, a protocol that has already been clinically validated and the evidence is irrefutable.”

That was 2005. Autism is clearly gone now, right? Mercury was removed from vaccines. The “clinically validated” protocol with “irrefutable” evidence has cured all autistics, right?

Autism as mercury poisoning was a lie. Chelation as a cure was a lie. And that lie was behind how Generation Rescue was born.

It’s surprising they lasted this long.

Good riddance, Generation Rescue. Autistics are better off without you. The autism communities are better off without you. The world is better off without you.


By Matt Carey

Thank you and farewell, Mel

12 Apr

Mel Baggs has passed on. Many may remember the name Amanda Baggs, same person. There is so much one could write about the impact that Mel had on the autism communities and the disability communities and humanity in general. I will not express the sadness I feel, but I want to write about two areas where Mel made a lasting change in my life.

Mel faced intense attacks over the years. Attacks that were mean, cruel, dishonest and worse. But Mel didn’t become mean in response. It was true leadership by example. Mel stayed advocating.

Mel found a partner in life. If memory serves, being together took a fight. My kid was very young then, but Mel helped me to see the future and to see my kid as a full human, not a perpetual infant. Helped me to plan for a time when I might need to fight for my kid’s rights to be a disabled adult. Adult.

I know these are brief comments. But make no mistake, these were powerful and important influences on my life.

I’ll miss you Mel.

Thank you Mel.


By Matt Carey

Lessons for the Day of Remembrance in the COVID19 era

3 Apr

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

It’s April. For some it’s “autism awareness month”. For others, we remember autistics and other people with disabilities who have been killed by parents or other caregivers.

It’s also April, the second month of “shelter in place” as the COVID19 pandemic brings the world to a halt.

There are two things which scare me more than anything else: losing one of my family and myself dying and not being here to provide for and protect my family. I’ve had to face these fears multiple times in the past. I’ve spent nights wondering if every text I got would be from my wife, who was at the hospital with one kid, telling me that kid had not made it. I spent a day with the misdiagnosis of a huge aneurysm in my brain. Just to name two experiences.

And now I face those fears again. I’m not very old, but old enough to be at risk. I look at my family and wonder about other risk factors. And I live in fear.

Let me focus on my autistic kid for now. It’s one thing in times of relative safety and security to say, “This kid is my whole world” (as are each an every one of my family). But when one faces the very real chance that in a year or two one or both of us may be gone, it gets very real, as they say. And as I face that reality, let me say a few truths:

My kid is not a “burden”. I don’t want that “burden” lifted by one or the other passing.

My kid is a joy. Sure, I want to live as long as I can to be there to support my kid. But I want to live as long as I can to spend time with my kid.

I’ve “walked in the shoes” of the parents who have killed their kids. I spend my life with a kid who is disabled, autistic, and in need of a very high level of support. I can not and I will not forgive or forget those who chose to kill their kids. I will forgive and support people who realize they can not handle the life they have and decide to let someone else take up the responsibility. I’ve traded emails with family members of murdered autistic kids, family members who would have loved to care for those kids. They walked in the very shoes of those who chose to murder. They cared for the same exact kids.

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.


By Matt Carey

WTF Republicans?

23 Mar

Both houses of Congress are working furiously on bills to stimulate the economy following the COVID-19 slowdown. Which is a good thing. But, politicians are politicians and they can’t seem to “waste a good crisis” (as the saying goes).

From the Washington Post: The GOP just smuggled another awful provision into the stimulus

According to language in the bill forwarded to me by a senior Senate Democratic aide, this provision excludes “nonprofits receiving Medicaid expenditures,” which would not be eligible for those loans.

This language has been interpreted in some quarters as an effort to deny funding to Planned Parenthood, a longtime GOP target. But Democratic aides think the language means a lot more than this.

Specifically, Democratic aides believe this language would exclude from eligibility for this financial assistance a big range of other nonprofits that get Medicaid funding, such as home and community-based disability providers; community-based nursing homes, mental health providers and health centers; group homes for the disabled; and even rape crisis centers.

Great. Nonprofits serving people with disabilities would be excluded from this part of the stimulus. Why? Why Republicans, why?


By Matt Carey

What “flattening the curve” means to my family

19 Mar

We hear a lot about “flattening the curve” these days. Here’s what this means to me (click to enlarge):

If hospitals are overwhelmed, my kid will not be high priority. My kid is disabled. If there are a limited number of ICU beds, for example, my kid very likely won’t get one.

So, thank you to everyone who is helping out. Everyone who is taking this seriously. It’s very, very tough, I know. But this is literally life and death for people like my kid.

By Matt Carey

More advice for the vaccine-skeptic community: just lie low right now.

13 Mar

I just finished writing my previous article a few minutes ago and I thought I’d check out my go-to site for bad information about health and autism:the age of autism blog.

Here’s the thing–right now people are focused on health and infectious diseases. And, guess what, your unhelpful (read–damaging, you case harm, people die because of your bad information) on sites like AoA just makes you look worse at times like that.

Here’s their article for the day Dr. Richard Moskowitz: Advisory on the Coronavirus

I knew they’d have nonsense like this up during this outbreak. It makes no sense. Not in the “their advice makes no sense” way (their advice does make no sense). Rather, in the “right now isn’t a good time to tell the world you give out bad advice while people are dying” way.

Here’s a quote:

When I first heard of the outbreak, my attention was fixed on the coincidence that it began in Wuhan, near the Chinese bioweapons lab, and the obvious speculation that the virus was manmade, which still hasn’t been ruled out.

Yes, We get it. The very first thing your community does is try to fit this into a conspiracy theory.

I can hear it now–Oh no! He called us conspiracy theorists! We don’t have to actually consider what he has to say now! On top of being conspiracy theorists, you are cowards.

Moving on.

In addition, many physicians are recommending high doses of Vitamin C, say 3000 mg. daily for prophylaxis, and even more for the actual illness, with coughing and shortness of breath, at which point Dr. Brownstein suggests adding Vitamins A, D3, and iodine as well.

“Many physicians”. Yeah. My kid deserves (and gets) better care than these “many physicians” dole out. People need facts now. Not your one-size-fits-all alternative to medicine. Everything can be cured by vitamins! Yes, you guys have no real tools so you just suggest vitamin C all the time. Seriously, people joke about this.

Is it proven to help with COVID-19? No. Is there any real reason (outside of your alternative to medicine world) that it should? NO. Here’s the thing–has it been proven to not hurt? Yeah, you didn’t even think of that, did you. It always works. Why question that?

Homeopaths have had and continue to have great success treating epidemic diseases like cholera, yellow fever, measles, influenza, and the like, using a simple method that deserves much wider recognition and use. Once about 20 or 25 cases have been investigated, one remedy will be found to fit around 75% of the cases, and is therefore designated as the basic remedy or genus epidemicus of the outbreak.

No, they don’t. Homeopaths don’t do anything. Using latin “genus epidemicus” and italics don’t change that.

People are dying. Now is not the time to advertise that you give people bullshit advice. I know you actually believe this. I know you somehow think that being intelligent means you can’t do something “stupid”. You are wrong.

If you thought this through, you’d back off. Go quiet until people stop paying so much attention. But you can’t. I’ve seen it again and again.

Thank God my kid gets better than you, Richard Moskowitz, M. D.. Thank God I didn’t get sucked into the sphere of nonsense and pain that is the Age of Autism and similar communities.

I’m better off for it and so is my kid.


By Matt Carey

Lessons from COVID-19 for the “vaccine skeptic” community.

13 Mar

Allow me to start with a litmus test, if you will. Many, perhaps most, of you who call yourselves “vaccine skeptics”, or “vaccine risk aware”, or “vaccine safety advocates” are actually anti-vaccine. If my telling you this makes you immediately discount what I’m about to say–you are a coward and you would never face the facts anyway. It takes guts to question your beliefs, and I’ve seen little of that in your community. So feel free to move along.

That said, in the past few years the leaders in your community have been telling you things that are flat out wrong. Lies if you will. (does that make you too uncomfortable to keep reading? Read the above, re: cowardice). Here are a few of those lies:

Diseases can be deadly
The human immune system can not fight off any an all diseases. I’ve heard people like Del Bigtree claim that somehow our immune system is “divinely” endowed or designed, and we should be able withstand diseases. We can debate theology elsewhere. But this is just a lie. People of all faiths have died from diseases throughout history.

People don’t want “natural immunity” at the risk of death
There’s a strange argument that fighting off an actual disease is good for a person. That “natural immunity” (derived from actually being sick) is a good thing, and immunity from vaccines is bad.

Guess what. Most people don’t believe that. Why? Because it’s a lie. But leave out the lie part: the public isn’t with you on this. People want to not risk death in order to get some “natural immunity”.

Better sanitation and alt-med don’t protect
There is a strong alliance between the alternative medical community and the anti-vaccine community. Alt-med practitioners make more money when people are scared of actual medical practitioners.

Let me put it more simply and direct–there is a huge conflict of interest at play here. Alt-med people profit from the fear they produce attacking vaccines. Does that make you too uncomfortable to consider what I’m writing? That’s a sign of cowardice. Sorry to keep hammering this, but all too often I read “Look at so and so calling us anti-vaccine! They are just persecuting us! Don’t consider what they are saying!” Every time I read those comments or blog posts, I just think, “you are such a coward”.

That all said, COVID-19 is killing people across the globe. People in developed countries are dying. People die more often when the medical system is overwhelmed. Which means that actual medicine, not alt-med, is keeping people alive.

Other diseases are deadly too
COVID-19 is causing huge problems in part because it’s new. We are a virgin population without immunity. That’s why the death counts are so high. But other diseases also kill. And they kill in developed countries with good medical care. Example–people die in France from the measles. Yeah, measles kills. We have been lucky here in the US, precisely because vaccines have kept the infection rate down.

While we don’t have the experience of our parents and grandparents, who saw these diseases sweep the country repeatedly in their youth, most of us understand that diseases kill. They maim.

Consider the classic fake risk/reward argument offered by the anti-vaccine community: “vaccines are dangerous! Diseases are not! Natural immunity is good!”.

The public knows you are lying. You may believe this argument, but that just makes it a different kind of lie. That’s what “spreading misinformation” means. It’s a polite way of saying, “they believe this, but they are wrong, and there’s enough evidence to prove them wrong that it’s a lie”.

There isn’t a huge population waiting for you to lead them
In my years watching the anti-vaccine community I’ve often seen the theme that the public secretly accepts their messages.

We don’t.

Look what happens when measles breaks out. The public doesn’t want your message. The public doesn’t want to be led to a world where diseases run free.

The public isn’t ignorant
I often read how the anti-vaccine community thinks that they are educated and the public is ignorant.

The basics of vaccine science are simple. Basic germ theory. Most people get it.

The basics of disease are simple. People suffer and die because of diseases. They die. Just because you may, and your leaders certain do, deny that fact doesn’t make it not true.

And when people forget, there are groups that are willing to give out good, accurate information.

Summary
I could go on and on. But here’s the thing–your community is dangerous. Your logic is flawed. Your conclusions are wrong. These aren’t opinions. These are facts.

I’m encouraging you to take stock of your messages and your logic. I doubt you will. I know few of you will read this, and very few would get past the first paragraph. But, please, take a look at the world around you. Question your beliefs.


By Matt Carey