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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

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

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

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

Judge Rotenberg Center’s shock devices banned by the FDA

5 Mar

One school and one school only uses electric shocks as a main part of their program. This is the Judge Rotenberg Center and the students are largely autistic.

Up until now.

The FDA has banned the devices.

ACLU COMMENT ON FDA’S FINAL RULE TO BAN ELECTRICAL STIMULATION DEVICES

From the ACLU statement:

“People with disabilities deserve the right to be supported with dignity and respect, and there are no circumstances under which they should be subjected to pain as a means of behavior modification.”

Here is a news article:

FDA bans shock device used on mentally disabled patients


By Matt Carey

Lydia X. Z. Brown : Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.

15 Dec

Lydia X. Z. Brown has an opinion piece in the Washington Post which, in my humble opinion, is well worth reading:

Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.Donald Trump’s attempts to discredit Greta Thunberg are the latest attempt to show autistic people can’t speak for themselves.

Here are the first two paragraphs:

When Donald Trump called Greta Thunberg “so ridiculous” and said she needed to “work on her anger management problem” and “chill,” it felt all too familiar. Like Thunberg, I am also an autistic activist used to people with more power dismissing me as angry, unmanageable and unlikable. These attacks come alongside insinuations that I never belong in the room and do not deserve the accolades I have earned.

Even when autistic people are honored, like Thunberg was when she was named Time’s Person of the Year, we are immediately discredited as children, reinforcing the ideas that children and autistic people alike have no agency and our work is illegitimate. For me, this has happened at every stage of my work as an advocate, since I drafted legislation on police training in Massachusetts when I was still in high school up to when I designed lesson plans on disability justice used in thousands of middle and high school classrooms through Amplifier’s We The Future art education project.

Lydia Brown is someone I respect a great deal. I’ve been following them for many years.

My autistic kid is lucky that advocates like Lydia are out there.


by Matt Carey

“I do believe sadly it’s going to take some diseases coming back…” — Jenny McCarthy 2009

5 Dec

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

Jenny McCarthy, 2009.

Jenny, you were as wrong about how people would react to outbreaks as you were wrong about vaccines and as you were wrong about fake autism cures.

Samoans a dying right now from measles. Maybe it’s time to step the f___ up and undo some of the damage you’ve caused? Maybe as in “it’s f__ing time you did this, Jenny”.

I can’t get the video from this story to embed, but it’s worth watching. Skip to 4:30s to see how the Somoan people are responding.

Anti-vax groups swamp Samoan government’s online pages during massive vaccination campaign.

I don’t know how in the hell you could have thought that outbreaks, kids dying, would make people believe you.

You’ve been hiding away for years, not facing the damage you’ve helped cause. Time to grow a spine and do something.

Matt Carey