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Xavier Becerra please seat a new IACC quickly

7 Dec

Xavier Becerra, the news is reporting that you will be nominated to be the new head of the Department of Health and Human Services. Congratulations. You will have a lot to do when you get started. One of those tasks is to seat a new Interagency Autism Coordinating Committee.

Please do this quickly. Please.

The IACC serves a very important mission, and we really could have used them this year to address the unique challenges of the pandemic. Not having an IACC in place hurts our communities, our people.

The law reinstating the IACC was signed on Sept. 30, 2019. Over a year ago. Nominations for members was held between November 19, 2019 and February 21, 2020. So HHS has had those nominations for over 9 months. I’m sure your staff can put the names of good candidates in front of you on day one. This should be an easy task to get done, do it quickly. Please.

By Matt Carey

Mr Trump, Mr Azar, your inaction is hurting autistic people

1 Oct

You took credit for it, but it is meaningless if it isn’t implemented. You are short changing people with disabilities.

Mr. Trump, a year ago you signed the Autism Cares Act into law. September 30, 2019. That law calls for the formation of the Interagency Autism Coordinating Committee (the IACC). Which has yet to be named and start work.

That is clearly your responsibility. Both of you, President Trump and Secretary Azar, both of you. I know, I served previously on the IACC. I was appointed by then Secretary Sebelius.

Six months after signing that bill, you took credit for it. You noted the IACC in your press release.

Last year, I was proud to sign into law legislation reauthorizing the Autism CARES Act, approving more than $1.8 billion in funding over 5 years to research and develop new treatments and therapies, and enhancing support services for those with ASD throughout their entire lives. This legislation also expanded the Interagency Autism Coordinating Committee to include representatives from 17 Federal agencies and stakeholders from throughout the autism community. The enhanced public-private partnerships made possible by these efforts are providing support to those with ASD.

It has been another six months and still nothing has been done to form the IACC and push forward the mission of the Autism Cares Act.

I am sincerely grateful that you and Congress put that law into the books. You took credit for it, but it is meaningless if it isn’t implemented. You are short changing people with disabilities.

Mr. Trump, Secretary Azar, select the new IACC. Get them started right away.

By Matt Carey

Trump’s strategy in the debate was to abuse Biden’s disability. That should sicken any real American.

1 Oct

Biden is a stutterer. He’s learned how to communicate clearly but that involves focus. There’s a great story in The Atlantic on this: John Hendrickson’s What Joe Biden Can’t Bring Himself to Say. Here is one paragraph discussing possible ongoing strategies Biden has:

Eric S. Jackson, an assistant professor of communicative sciences and dis­orders at NYU, told me he believes that Biden’s eye movements—the blinks, the downward glances—are part of his ongoing efforts to manage his stutter. “As kids we figure out: Oh, if I move parts of my body not associated with the speech system, sometimes it helps me get through these blocks faster,” Jackson, a stutterer himself, explained.

I watched the start of the presidential debate last night, and watched more segments through the night. Everyone could see the interruptions and it’s natural to assume that this was Trump’s attempt to dominate the conversation. And Trump wanted to appear stronger than Biden, to be bullying him. And, of course, to try to get Biden angry. All of these are probably true.

But there’s another aspect to this. Watch Biden, he clearly focuses on what he’s saying to get through the stuttering. Trump’s team clearly saw this and saw this as a way to derail Biden. So the strategy emerged: keep interrupting, keep chattering while Biden is talking. This will throw Biden off. If Biden interrupts in kind, as he did some times, it won’t work as well because, frankly, Trump doesn’t think while he talks. And it is a way to get under Biden’s skin. Keep poking at that stutter–without being completely obvious–and Biden will get angry.

As I read John Hendrickson’s piece I realized a few things. I realized how lucky I am. Lucky that my speech issues were caught early, and that since special education had started being offered in schools, I was able to get help early. But I also realized how I need focus to speak on important issues, and how interruptions make that so difficult.

So, yeah, I think this is real. Team Trump saw an opening. A disability in an opponent. And they planned their attack to use that disability.

These are the people running the country today. This is why I can’t sit back and watch 2016 happen again.

By Matt Carey

So where is that economic miracle, Donald?

30 Sep

There’s a reason why Trump isn’t talking GDP growth these days. It’s because he failed by that measure.

Four years ago Donald Trump was able to sell America that the economy was in bad shape (it wasn’t) and that he, a businessman, could help. Many Trump supporters have told me then and now how we need a president who can run the country like a business. I’ve never gotten any real detail on that argument, they have just repeated Trump’s slogan.

We’ve recently learned from Mr. Trump’s taxes that he’s not very good at business. It wasn’t a big surprise given his failures in so many businesses over the years. We now know that his businesses have been kept afloat by his reality show and endorsements. And big, big loans.

So, we have a showman president, not a businessman president. Which anyone watching the past few years already knew.

But how about that economic miracle? What about the turnaround we were promised (since the economy was doing well under Obama, we didn’t need a turnaround, but let’s keep going). One way we can measure Mr. Trump’s success is with the Gross Domestic Product (GDP). The recovery from the great recession was slow, we were told. Trump can do better. This was also a key to his sales pitch for his tax cut: the economy would grow so much that the tax cut wouldn’t increase the deficit. He’s promised 4%, 5% even 6% quarterly growth in GDP.

We don’t hear him talk GDP much now. We don’t hear him brag how he grew the economy so much that we can pay for the huge deficits he created with his tax plan. Makes me want to know if he succeeded (OK, I know he failed, makes me want to quantify it).

With that in mind I pulled GDP data from here to check. Here it is: a table of the percent change in GDP by quarter going back to part way through the Obama administration:

I’ll be fair: I won’t include those quarters affected by the pandemic. Sure, I could also argue that with Trump’s epic mismanagement the economic hit has been far worse than it should have been. I could argue that convincingly. But let’s just look at the quarters before the pandemic. Trump had 11 quarters as president, back to Q1 2017 when he was inaugurated. For compariso, I then counted 11 quarters back to average for Obama.

Average GDP growth in Trump’s first 11 quarters was 2.5%. For the previous 11 quarters, under Obama, it was 2.4%. Trump did no better than Obama. And–this is important–that is with the short term jolt he got with his tax cuts.

So the only way Trump did as well as Obama was at the huge cost of a big deficit.

There’s a reason why Trump isn’t talking GDP growth these days. It’s because he failed by that measure.

By Matt Carey

Looking back 4 years: the rise of Trump, aided by faux autism advocates. I won’t be quiet again.

29 Sep

I still can not fathom how parents of disabled kids, of autistic kids, would support Trump. But this election, I’m not going to remain quiet. I have no illusions that my voice will make a significant difference. But I will not stand by silently while that charlatan tries for another 4 years of damaging America

Four years ago I stopped wanting to write. There were many reasons, but one was the rise of Donald Trump. Even when it looked like he wouldn’t win, the fact that so many Americans could support this man was horrible. Donald Trump, who had no disability platform. Donald Trump, who thought it funny to mock a disabled reporter (Serge Kovaleski) at one of his rallies.

The excuse offered–he has used acting disabled like that to mock people in the past. Or, as Ann Coulter put it, he was doing a “standard retard”.

Oh, that makes it soooo much better. Because to America, using disability to insult and mock others is allowed. It’s expected.

Anti vaccine autism parents long ago showed us their priorities: attacking vaccines. They demonize autistics, playing them up as burdens and worse. Their children’s disability is a weapon in their war against vaccines. Ironically, this group which fights efforts to bring acceptance to people with disabilities crave, absolutely crave acceptance for their views against vaccines. So it wasn’t surprising that they’d support Donald Trump, a man who had tweeted about the vaccines-cause-autism lie (So Anti Vaccine Crowd, how did that campaign for Trump thing work out for you?)

Quite frankly, these are not good people. I needed them out of my head. So I stopped writing, countering their misinformation by blog. Instead I counter their message in life, showing my community what a beautiful human my kid is.

But we are back, another election. Trump wants more time. More time to make the world even harder for my kid and other people with disabilities.

I still can not fathom how parents of disabled kids, of autistic kids, would support Trump. But this election, I’m not going to remain quiet. I have no illusions that my voice will make a significant difference. But I will not stand by silently while that charlatan tries for another 4 years of damaging America.

By Matt Carey

Did Jake Crosby close “Autism Investigated”?

25 Sep

There is/was a blog called “autism investigated”. If you are unaware of it, consider yourself lucky. It is/was a cesspool. Take one of the worst of the anti-vaccine bloggers (so bad that even the Age of Autism blog split with him), add a hefty level of misogyny, and then go full Trump supporter and you had Jake’s “autism investigated”.

As of now website gives this:

As noted Jake became an ardent Trump supporter, in addition to his anti-science and anti-vaccine views. He also took on a very self-defeating view of why he was unsuccessful socially.

WaPo Wants Autistic Men to Fuck Even Less

What autists need to do is get over their extreme anxiety when it comes to women, not worsen it by worrying about make-believe “boundaries” established by feminists and “autistic” cuck reporters. It’s almost as if the author wants everyone else to be as dry as he is down there; he’s just picking autists as an easy target.

RESEARCH: Autistic Women More Likely To Be Dykes

And, let’s not forget how he characterized gender reassignment surgery as “genital mutilation” (allying with alt-right activist Milo Yiannopoulos)

Facebook Censors Milo Yiannopoulos For Condemning Transgender Genital Mutilation of Autistic People

Apparently he wasn’t alone in sabotaging his own desires to find female companionship. He seems to have allied with a former commenter on this blog (whom I had completely forgotten until I read this): Autism’s Gadfly on Why Nobody Wants to Fuck Us

It looks like his Facebook page is down as well. I hope Jake has indeed moved on. It would be great if he’s decided to analyze his efforts to date and move on. Unlikely, but it would be good for him.

By Matt Carey

Shelter in Place saved lives

25 Sep

When people claim that shelter in place orders didn’t save people, they are just wrong. When people say we didn’t “bend the curve”, they are just wrong. And this sort of misinformation will lead to people dying.

This is obviously a non autism post. Sadly, the same people (many of them autism parents) who have spent years promoting misinformation about autism, autism ‘cures’, and vaccines are now talking about the COVID-19 pandemic. So I felt it appropriate to speak to some of this misinformation.

This is also a lot of graphs.  But the bottom line is simple: we were in a runaway situation.  Cases were doubling every 5 days.  In a few weeks after shelter in place we would have had our hospitals overwhelmed.

There is a push against the shelter-in-place orders that were put in place to slow the spread of the virus SARS-CoV-2. I’m sure we will be debating for years to come what the best plan should have been. But what is not a debate is whether the shelter in place orders limited the spread and, in so doing, saved lives.

I live in Santa Clara County, which was one of the first counties to institute shelter-in-place (SIP) on March 17, 2020. While I was surprised by the order, the reasoning was already becoming clear: the virus was spreading in our county at an alarming rate. I had been watching the numbers day by day, and we were seeing a case count doubling every 5 days. New York City was clearly seeing the start a huge outbreak at this time.. In a little over a month previous Italy had seen deaths rise from near zero to 6,000 per day. That’s one month.

I pulled the data to see what happened here in Santa Clara county.  And, more importantly,  what could have happened.

Here’s a graph that would have faced the public health staff in Santa Clara County in mid March:

COVID-19 cases in Santa Clara County as of March 17

Looks like an exponential, and this is exactly what it is.   Cases were growing fast.  Here’s a fit to those data using an exponential growth curve:

That’s a very good fit to the data. Cases were doubling every 5 days. With that sort of growth, we were not very far behind NYC. Keep in mind, this is just a count of who was being diagnosed with COVID-19.  A lot of cases were not, so there was a lot more COVID in the community than these few hundred cases.  The shelter in place order is at day 25.

Put yourself in a public health official’s place. You see these data, what does that tell you about the future? Well, since it’s an exponential, we can use the fit to  predict. Consider 4 weeks out from the date of shelter in place. Ask, how much would the epidemic have grown in that time? The curve tells us: we would have grown to about 93,000 identified cases (assuming testing could keep up).

When you are covering this much of an increase, it’s often helpful to use a semi-log plot.  In that case the exponential curve is a straight line (same data, graphed differently):

Let’s overlay the actual case count on top of this line.  We can ask  ” did we bend the curve”? Absolutely. Here are the data:

Very soon after the shelter in place order (day 25) the case count diverges from the projection.  The curve was being bent.  By 4 weeks out from the shelter in place order, and the number of cases was 50 times lower than what would have happened without any actions to mitigate the spread.

50 times lower.

This is even more clear if we go back to a non log plot:

You can barely see the black line for the case count on this graph.  By day 50, the actual number of cases is well below the prediction. And that means lives were saved.

At the time, the fatality rate was unclear, there were estimates of about 4% of those identified as covid positive dying (the “case fatality rate”). Current statistics put the case-fatality rate in the U.S. at about 2.9% . With 3% case fatality, we were looking at almost 3,000 people dead by a month after the shelter in place . And that number would have continued growing steeply had we not taken measures to mitigate the spread.

It is worth keeping this in mind: if the hospitals were overwhelmed, the case-fatality ratio would have been higher. More people would have died. 90,000 cases would have absolutely overwhelmed our hospitals. Even with the extra capacity in the temporary hospital set up in our convention center. That hospital had only 250 beds. Not all of the 90,000 cases would have required hospitalization. But there would have been enough to swamp our hospitals.

Santa Clara County lost about 150 people in the first wave of the pandemic (it’s hard to say precisely where the cutoff for “first wave” would be, but somewhere about 150-200 looking at the trend). It could have been 10 times higher, or even more than that.

When people claim that shelter in place orders didn’t save people, they are just wrong. When people say we didn’t “bend the curve”, they are just wrong. And this sort of misinformation will lead to people dying.

By Matt Carey

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.