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How Neurotribes made the Holocaust personal for me

14 Nov

I firmly believe that all people are my people. That I have to accept that my people were both the victims and the villains of history. I weep for my people who have suffered, and I feel shame for the actions of those who perpetrated those crimes.

I firmly believe this. Now, it’s one thing to say, “the people who suffered in the Holocaust were my people” and to feel that very real pain. But, as I found out, there is a whole different level when it really becomes personal.

And that’s what happened when I read Steve Silberman’s Neurotribes. Actually, it happened when I Steve was writing the book and shared some of his research with me.

You see, I am not Jewish. I am not Roma. I am not gay. My disability is not major. In short, I am not any of these or the other peoples targeted by the Holocaust.

I am, however, the father of a child who would never have made it through the Holocaust. And it never really struck home until Neurotribes.

Steve lays out in his book how the framework for the Holocaust was built starting with one person. A disable child. A disabled child in a time when the culture (and not just in Germany) made having a disabled child a shame for a family. A burden. Someone to be rid of.

Generally, being “rid of” meant institutionalization, although there appears to have been an unofficial euthenasia program going on in maternity wards. In 1939, one set of parents took the next step: they asked their doctor to “put to sleep” their disabled child. Years before a researcher had surveyed parents of disabled children and found that many would approve of their child’s death, but didn’t want to officially know. This step was something different. His own parents asked for his death. There was no law that would allow that, but in approving this child’s death, the legal framework was created that would grow into the murder of millions of people.

Let me pause for a moment here. I can’t read that, hear that, think about that and not see my kid’s face. Not see the look of absolute trust, of love, that I see in that face every day.

And think of betrayal. And think of the face of kids as they were taken from their families. The faces of kids as they landed in horrible places before their deaths. Faces like my own child’s face.

It’s horrible, absolutely horrible, to think about the atrocities of the Holocaust. Those who died have been and always will be my people. But, yes, this makes it more personal. Much more painful to me. I wish I were a better person and didn’t need that personal connection to feel this pain.

Steve called me at one point when he was writing his book. He read me some of the material he had found, about how children like mine were so disregarded that their own parents gave them over for death.

I went silent for a long time. Not because I was being solemn, but I literally could not speak. My child’s face. That’s all I could think of. Love. Trust. And, yes, betrayal. A look I can, thankfully, only imagine.

We will never let this happen again. Of course I believe in that. Strongly. And I weep for the fact that, yes, genocide has happened in my lifetime and, yes, my America has not acted vigorously. I have not acted vigorously. But with the story of Gerhard Kretschmar, my connection goes beyond belief. It now goes to my heart and soul. Again, I wish I were a better person and it didn’t take his story to drive this home so deeply.


by Matt Carey

Bernie Marcus was one of Trump’s biggest supporters. Will that help the autism communities?

11 Nov

Even though Donald Trump reports that he’s very wealthy, he did take in a lot of money to to support his presidential campaign. I checked who the large donors were to the Trump campaign and was surprised to see that one of the top donors was the Marcus Foundation. That appears to be Bernie Marcus, founder of Home Depot. He came out a while back in vocal support of Donald Trump (Why I Stand With Donald Trump).

Bernie Marcus also founded the Marcus Autism Center, and if memory serves, jump-started Autism Speaks with about $25M.

Now I am not a supporter of Donald Trump. In fact, I believe Mr. Trump is quite bad for the autism communities. Given that, I have this hope that as a big donor, Mr. Marcus might get some time with Mr. Trump and might be able to advise him on a few topics.

For instance, Mr. Trump once suggested that radio show host Michael Savage should head the National Institutes of Health. Mr. Savage is on record as saying:

In 2008, he said nearly every autistic kid was “a brat who hasn’t been told to cut the act out” and said “there is no definitive medical diagnosis for autism.”

One guesses that Mr. Trump wasn’t serious but was trolling for publicity. But, just in case, someone should tell Mr. Trump that Mr. Savage is a rather poor choice for NIH head. I mean, really, it’s a $31B concern. Not something you pass off to a guy with no experience, no understanding of medicine and research, and who tells callers to “get AIDS and die”.

If memory serves, the Autism CARES act comes up for renewal towards the end of the Trump presidency. As someone who has supported funding for autism research, perhaps Mr. Marcus could put in a good word with Mr. Trump.

Perhaps we should just step back a bit and ask that perhaps someone could suggest to Mr. Trump that having a policy on disability–any policy–might be a worthwhile thing to consider?

Reading Mr. Marcus’ statements of support for Mr. Trump, it appears that he takes issue with the Affordable Care Act. Perhaps Mr. Marcus could explain to Mr. Trump that many autistics and autism parents rely on this new insurance structure in the U.S., and they can’t afford medical health savings accounts. That any restructuring should take the needs of our most vulnerable into account.

A while back Mr. Trump tweeted that he believes in the failed idea that autism is caused by vaccines. Mr. Marcus, who actually had access to real researchers on the topic, has stated:

“Everything that comes back is the same,” he said. “They cannot find any connection between immunization and autism.”

People are going so far as to claim that Trump took time out of his busy campaign schedule to sit down and talk with none other than Andrew Wakefield. Perhaps Mr. Marcus could talk to Mr. Trump, one billionaire to another, about just how much weight to give to Mr. Wakefield (in case you are wondering–the answer is none. Give him no weight).

Sorry to end on that whole Andrew Wakefield thing. Wakefield is a sideshow act in the autism story. Heck, he’s the understudy to the sideshow. But, he’s also a sideshow that has caused more damage to the autism communities than anyone in recent memory.

Mr. Trump has built his image as someone who shoots from the hip and believes his instincts. Perhaps Mr. Marcus could step in and offer some guidance to Mr. Trump’s instincts. As least as far as autism is concerned.


By Matt Carey

Donald Trump in language some autism parents will understand: Train Wreck

8 Nov

I should stop being surprised by my fellow autism parents–those who still cling to the idea that autism is a “vaccine epidemic”. I shouldn’t be surprised that they support Donald Trump. Trump has said he believes the failed vaccine-causation idea. So what if he’d be horrible for the future of our community, Trump says what those parents want to hear.

So, let’s just put this in language those parents will understand:

Donald Trump is a Train Wreck.

“Train Wreck” was a common phrase used to describe autistics 10 years ago. Perhaps the most prominent voice was a guy named Rick Rollens, autism parent and believer in the idea that vaccines cause autism. When people talked about the fact that many autistics are undiagnosed, Rollens responded “Missing child with autism is like missing a train wreck”. Thank you Kathleen Seidel for getting Rollens to stop that.

Now back to Donald Trump: missing the fact that he would be terrible president is like missing a train wreck. Let’s leave out the fact for now that he’s proved himself to be completely unfit for the main duties the president would take on with his childish outbursts and lack of self control, let’s just consider this fact:

He has no disability policy. Further, we can expect nothing from him. He has shown himself to be an arrogant ableist; a man who mocks the disabled.

Trump has no backbone. No guts. It takes guts to admit a mistake and apologize. Trump never will. Sounds a lot (LOT) like the proponents of the idea that vaccines cause autism (looking at you, Andrew Wakefield). When called out for his attack on a disabled reporter, Trump responded that the reporter should apologize (no, seriously, he did!), and further stated:

Mr. Trump stated, “Serge Kovaleski must think a lot of himself if he thinks I remember him from decades ago – if I ever met him at all, which I doubt I did. He should stop using his disability to grandstand and get back to reporting for a paper that is rapidly going down the tubes.”

That press release on Trump demanding an apology was one of the 10–ten!–hits on his website for the search term “disability”. None of those hits are relevant to a better life for my kid.

This is the guy you “vaccines-cause-autism” people want making policies on disability?

Contrast this with Hillary Clinton. 336 hits for “disability” on her website. She’s actively campaigned on disability issues.

But, hey, Trump says you aren’t chasing a failed idea on vaccines. So promote him. Trash your kids’ futures for a chance to hear someone important say, “I, a person who ignores science, facts and anything else I disagree with, think vaccines cause autism. Who needs research when I have twitter?”

I know the “vaccines-cause-autism” groups shy away from the word “acceptance”. We live in a world where acceptance has already dramatically changed the lives of people with disabilities. Want to go back to a world where you can’t send your kid to school? Because Special Education came about due to acceptance: accepting that people with disabilities have rights. Want to go back to a world where you parents can’t take your kid in public? Where stores and restaurants can deny you service because you have a disabled kid with you? Where adult housing means “so you didn’t institutionalize your kid when they were young, so now you can pick one”?

Progress will be made by people who accept people with disabilities. Progress will be lost when people who don’t accept people with disabilities make the choices.

Who is Donald Trump if not a man who has made “othering” a principle part of his campaign? Othering is when you treat another person or group based on how they are different than you, rather than on your common humanity.

Trump’s immigration policy? Othering.

Trump’s policy towards minorities? Othering.

Trump’s plan to roll back marriage equality? Othering.

But, let’s accept that so we can have someone say, “ignore data. Ignore facts. Vaccines cause autism.”

Let’s vote someone in who would gut access to health insurance for many in our community. Everyone has risks of serious medical conditions. Autistics even more so. Heck, that’s one of the “vaccines-cause-autism” community’s favorite talking points. The Affordable Care Act gave access to medical insurance to millions of people who didn’t have it–and that includes many, many autistics.

But let’s take that away. Let’s go with Trump’s plan for medical health savings accounts. A plan that basically says, “do you have enough money to play for medical expenses? Great, here’s a tax break for you.”

Does that sound like an insurance program friendly to people with disabilities? Here, let me answer that for you: NO!

Donald Trump is a train wreck for the disability community. The fact that we have autism parents supporting him is just another example of how the failed vaccine idea has turned many potentially useful advocates down a fruitless and destructive path.

I am so glad this election is almost over. But the serious problems we have as a country will remain, including a vocal contingent of autism parents who will take us to self-destrcution in their one-(failed)-issue voting.

Matt Carey

PBS NewsHour: What the candidates offer to Americans with disabilities, a growing voting bloc

4 Nov

The PBS NewsHour has a segment up about the upcoming U.S. election and the disability community.

Unlike in past presidential contests, disability is something both campaigns have addressed this cycle, if sometimes inadvertently. More than 35 million Americans with disabilities will be eligible to vote, making up almost one-sixth of the electorate. Judy Woodruff gets views from both Clinton and Trump supporters on how they’re voting.

Unfortunately, wordpress.com won’t let me embed the video, so here is the link:

http://player.pbs.org/viralplayer/2365881917/

The NewsHour does a good job of actually bringing in the viewpoints of people with disabilities, including an autistic young man who communicates his thoughts on this topic through a letter board.

The NewsHour also does a good job of bringing in both sides of the discussion: people with disabilities who support Clinton and who support Trump.

That said, Donald Trump is clearly a bad choice for the disability communities. Given what a disaster he would be as a president in general, his disability policy (or, lack thereof) and respect for people with disabilities (or, lack thereof) are sometimes lost in the noise of this election. But make no mistake, Donald Trump is just flat out bad for the disability communities.


By Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

Yes, California children are dying of measles. Today. It’s called SSPE. Andrew Wakefield, Del Bigtree, Polly Tommey, stop lying about it.

2 Nov

One of the very frustrating aspects of the vaccines-cause-autism myth is that my community–autism parents–are largely responsible for spreading the misinformation and the fear. One need only look at Jenny McCarthy, Generation Rescue, the National Autism Association, TACA (Talk about Curing Autism), Polly Tommey, and almost any online discussion about vaccines to see the misinformation being spread by autism parents.

Listen to someone spreading the fear about the MMR vaccine and you will almost always hear, “measles doesn’t kill”. I’ve heard it a number of times from Andrew Wakefield. Remember him? He’s the guy whose unethical research 20 years ago fueled the fear we have today. His current effort is a fake documentary called “Vaxxed”. His team includes Del Bigtree (a former actor and low level producer for daytime TV) and Polly Tommey (an autism parent and Wakefield ally). As part of their PR tour for their film, they’ve given a number of personal appearances and posted video to Facebook. Watch them a few times and you will see Wakefield’s team–especially Del Bigtree–that measles is not a fatal disease. That no one has died of measles in California, they say. Del Bigtree focuses on California a great deal. He’s from California. California had a sizable outbreak recently and, partially as a result of that, changed their laws on vaccines for students.

Del Bigtree is wrong, as he usually is. Measles does kill. The death rate in France over the past decade has been about 1 in 2000, And that’s the number for people killed during the infection. The recent outbreaks in California have not resulted in immediate deaths, but we haven’t had outbreaks as large as those in France. However, measles is killing people in California right now. It’s killing them with the long-term infection called SSPE. People in California have died in recent years, and one is currently dying of SSPE. SSPE is incurable. It’s a slow, agonizing death.

Want more facts about SSPE?

What is Subacute Sclerosing Panencephalitis?
Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS). It is a slow, but persistent, viral infection caused by defective measles virus.

and read more from that same site:

What is the prognosis?
Most individuals with SSPE will die within 1 to 3 years of diagnosis. In a small percentage of people, the disease will progress rapidly, leading to death over a short course within three months of diagnosis. Another small group will have a chronic, slowly progressive form, some with relapses and remissions. A very small number (approximately 5 percent) may experience spontaneous long term improvement and regain lost function. Prevention, in the form of measles vaccination, is the only real “cure” for SSPE.

You can read more but here’s what we are talking about: in addition to the people who die from measles infections, measles infects the brain in some people and they die. They die over years, slowly losing function. Spending years knowing death is coming.

And a recent study shows that SSPE has been happening in California. People have died in recent years. Someone is dying right now of SSPE.

There are a number of news stories about this. Below is the abstract from the conference.

Subacute Sclerosing Panencephalitis: the Devastating Measles Complication is More Common than We Think

Background: Subacute sclerosing panencephalitis (SSPE) is a fatal complication of measles. Thought to be rare, SSPE incidence decreased with routine measles vaccination, but infants with measles remain at highest risk of this complication. We reviewed SSPE cases in California from 1998-2016 to understand current risk factors for SPPE.

Methods: SSPE cases had a clinically compatible illness and either 1) measles IgG antibody detection in the cerebrospinal fluid; 2) characteristic pattern on electroencephalography; 3) typical histologic findings in brain biopsy; or 4) medical record documentation of SSPE-related complications. Cases were identified though a state death certificate search, reports from the Centers for Disease Control and Prevention, or through investigations for undiagnosed neurologic disease. Measles IgG detection was performed using indirect enzyme immunoassay at the California Department of Public Health (CDPH) or by immunofluorescence assay at clinical laboratories.

Results: Seventeen SSPE cases were identified. Males outnumbered females 2.4:1. Twelve (71%) cases had a clinical history of a febrile rash illness compatible with measles; all 12 had illness prior to 15 months of age and measles vaccination. Eight (67%) children were living in the United States when they had measles. SSPE was diagnosed at a median age of 12 years (range 3-35 years), with a latency period of 9.5 years (range 2.5-34 years). Many cases had long-standing cognitive or motor problems prior to diagnosis. Among measles cases reported to CDPH during 1988-1991, incidence of SSPE was 1:1367 for children < 5 years, and 1:609 for children < 12 months at time of measles disease.

Conclusion: SSPE cases in California occurred at much higher rate than previously published among unvaccinated children who were infected with measles in infancy. Protection of infants younger than 12-15 months of age, when measles vaccine is routinely administered, requires avoidance of travel to endemic areas, or early vaccination prior to travel. Clinicians should be aware of the possibility of SSPE in patients with compatible symptoms, even in older patients with no specific history of measles infection. SSPE demonstrates the high human cost of “natural” measles immunity.

Let’s pull that last sentence out for emphasis:

SSPE demonstrates the high human cost of “natural” measles immunity.

The study above is based on something called data. Del Bigtree bases his arguments on a Brady Bunch episode.

No, I’m not making that up, Del Bigtree claims that since there was a Brady Bunch episode about measles, it must not have been a big deal in the 1960’s. That’s about as logical as saying, “well, there was this TV show about being in the Marines called ‘Gomer Pyle’. So, obviously, the Vietnam War was no big deal.”

I have zero belief that Del Bigtree (or Jenny McCarthy, Generation Rescue, the Age of Autism blog, Andrew Wakefield, or any of the rest) will change their claims that “measles is no big deal”. Why? Because Del (and the rest) are cowards. It takes guts, serious courage, to stand up and say, “I was wrong”. It takes guts to break from your community and say, “people, this position is dangerous”.

It takes the sort of courage that Del Bigtree and the rest just do not have.


by Matt Carey

ABC to present “Wacky Church Under Fire Over ‘Miracle Cure’ for Autism”

27 Oct

MMS. Miracle Mineral Solution. CD. Chlorined Dioxide. Call it what you want, it’s a scam. Worse than that, it’s abusive. And thankfully it’s getting some national news attention.

ABC’s 20/20 will present on Friday, Wacky Church Under Fire Over ‘Miracle Cure’ for Autism

Here’s one section of the website for the news segment:

“They’ve got their own Facebook group. There are people admitting to using this stuff on their children. Children are experiencing symptoms,” Eggers said. “You are doing it at the expense of these defenseless children. How, how, how can you not call that evil?”

MMS/CD whatever you want to call it, is sold with a bunch of science-sounding mumbo-jumbo. Believe me (a Ph.D. scientist with 30 years of experience), the explanations given by people like Kerri Rivera and Jim Humble for what MMS does amount to science nonsense.

Thank you ABC for taking this on. Please don’t walk away from this story, keep on it. We need this abuse to end.

By Matt Carey