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Flu vaccine given to pregnant women doesn’t cause autism. Is anyone surprised?

3 Mar

I happened to run across this study from last year: Maternal Influenza A(H1N1) Immunization During Pregnancy and Risk for Autism Spectrum Disorder in Offspring : A Cohort Study and thought it worth highlighting. The anti-vaccine movement has been good at moving goalposts and one of their lines in recent years has been that vaccines are dangerous for pregnant women. One line of “logic” holds that as mercury was phased out of vaccines, the influenza vaccine was given to pregnant women. Thus, we are told by anti-vaccine activists, explains why there was never their predicted drop in autism rates as thimerosal was phased out of vaccines.

The conclusion of the study is one line:

This large cohort study found no association between maternal H1N1 vaccination during pregnancy and risk for ASD in the offspring.

Will this convince the remaining anti-vaccine activists? Of course not. Is this surprising? No.

But it is worth noting another study which debunks their dangerous misinformation.

By Matt Carey

I got my second dose of COVID vaccine.

19 Feb

I am very fortunate that my state classified parents of high risk disabled kids (young adults, in my case) as “health care workers” and granted us access to the COVID-19 vaccine. 4 weeks ago I got dose one, and today I got dose 2.

As a short PSA–nurses like food and nothing stops you from showing them some gratitude. Here I am with the nurse who administered my shot, handing off a bag of chocolate.

“High risk” isn’t just a phrase. It’s a reality. My kid has a higher chance of complications or death than others. So I do this to protect them. And hospitals don’t have the capacity to handle a high support individual in the best of times. With a pandemic, the idea that my kid could end up strapped down and/or sedated has been very much on my mind.

So if I can reduce the chances of my kid getting sick, I’m taking it.

And I will admit, I am pleased to have the protection for myself. One of the phrases you will hear attributed to parents of disabled kids is “what will happen when I’m gone”. Well, this is a big step to make “when I’m gone” happen later. COVID kills.

As the parent of an autistic person I am well aware that many of my fellow parents are actively anti-vaccine. That’s a big reason why I speak out against their misinformation. The harm they do is very real.

I look forward to a time when we have COVID-19 under some control. Not so I can stop wearing a mask or eat at a restaurant. So I can rest with the confidence that my kid and other people are safer.

By Matt Carey

As of March 15 people with developmental disabilities can qualify for COVID vaccines in California

18 Feb

California is opening access to COVID vaccines to more people. As part of this they have issued “Updated COVID-19 Vaccine Allocation Guidelines” which includes guidance on vaccines for people with developmental disabilities. Access will start March 15. Individuals must be 16 years or older, and meet these requirements:

1) The individual is likely to develop severe life-threatening illness or death from COVID-19 infection
2) Acquiring COVID-19 will limit the individual’s ability to receive ongoing care or services vital to their well-being and survival
3) Providing adequate and timely COVID care will be particularly challenging as a result of the individual’s disability.

Here is a quote of the guidance:

Vaccinating those at higher risk

Beginning March 15, healthcare providers may use their clinical judgement to vaccinate individuals aged 16-64 who are deemed to be at the very highest risk to get very sick from COVID-19 because they have the following severe health conditions:

Cancer, current with weakened immune system
Chronic kidney disease, stage 4 or above
Chronic pulmonary disease, oxygen dependent
Down syndrome
Solid organ transplant, leading to a weakened immune system
Sickle cell disease
Heart conditions, such as heart failure, coronary artery disease, or cardiomyopathies (but not hypertension)
Severe obesity (Body Mass Index ≥ 40 kg/m2)
Type 2 diabetes mellitus with hemoglobin A1c level greater than 7.5%

If as a result of a developmental or other severe high-risk disability one or more of the following applies:

The individual is likely to develop severe life-threatening illness or death from COVID-19 infection
Acquiring COVID-19 will limit the individual’s ability to receive ongoing care or services vital to their well-being and survival
Providing adequate and timely COVID care will be particularly challenging as a result of the individual’s disability.

This is a very welcome change. Caregivers were allowed access to the COVID vaccines earlier (Family members of some people with developmental disabilities declared “health care workers” and are eligible for COVID vaccines in California). Now we can extend People with disabilities are at high risk from COVID and getting this protection is a big step forward.

By Matt Carey

Family members of some people with developmental disabilities declared “health care workers” and are eligible for COVID vaccines in California

15 Jan

California Department of Developmental Services (CDDS or California DDS) has deemed that “family members of certain people are “health care workers” and are “prioritized for COVID-19 vaccination”.

In this letter, COVID-19 Vaccine Phase 1A Letter for Family Members, Nancy Bargman, Director at Cal DDS, states:

The purpose of this letter is to clarify that family members of certain people are “health care workers” pursuant to the State of California’s Vaccination Plan ( get-vaccinated), and thus are prioritized for COVID-19 vaccination within Phase 1A.

They have also included this on a FAQ on the Cal DDS website. This document, COVID-19 Vaccine Frequently Asked Questions, from the California DDS states:

Will any family member caregivers of regional center consumers be eligible to receive the vaccines during this phase?
Family members who care for regional center consumers at high risk of COVID-19 complications and related fatalities including the following conditions: cerebral palsy, down syndrome, epilepsy, and individuals who have specialized health care needs, including dependence upon ventilators, oxygen, and other technology. This list is not necessarily exhaustive.

This means that some family members/caregivers of developmentally disabled people in California are able to get the COVID-19 vaccine now.

Note a few points:
1) this doesn’t apply to the person who is actually in the high risk category. That’s not ideal, but this is a start

2) this applies to caregivers of individuals in high risk categories. They list some of these (including cerebral palsy, epilepsy, Down syndrome and people with special health care needs). While they say the list is not necessarily exhaustive, some categories of disability are probably not sufficient.

3) one needs eligibility documentation from their regional center:

The eligibility of these family members can be ascertained by documentation from their California regional center, verifying the qualifying condition of the member of their household who has an intellectual or developmental disability.

I don’t know what the actual process will be, but I can make suggestions:

1) reach out to your Regional Center contact. Ask for the procedure, and ask for what qualifies for eligibility documentation. Ask if the individual you are caring for qualifies.

2) check with your county for how you can get an appointment for a vaccine.

Here in Santa Clara County one can start withCounty of Santa Clara COVID-19 Vaccine Information for the Public. There is a section “Individuals who are eligible to be vaccinated, should contact their healthcare provider for more information or to make an appointment”. Find your provider and follow the link for the medical provider you use.

I am not in any of the named health care programs so I used the link for Good Samaritan Hospital which is for:

Individuals whose primary care provider is not with Kaiser, PAMF, Stanford, or SCVMC and are:

Eligible healthcare personnel in Phase 1A

Here’s what I did. I can’t say it’s the correct way to go (my contact at the regional center is on vacation so I did not get guidance from them–I’d suggest contacting your RC contact)

My explanation under “other” is:

Family member of individual with epilepsy: deemed health care workers by director of California Department of Developmental Services

I have an appointment. I will bring the letter (linked above) and my child’s IPP. I don’t know if this will work, but I will try and report back here.

By Matt Carey

An old “friend” learns an old lesson

21 Dec

15 years ago I went online to find out information about autism. Like many parents, I didn’t know much before my kid was diagnosed. And like many parents, I’m still learning.

With the rise of the internet and, later, social media, advocacy by and for autistic people was increasing. It wasn’t new (for example, Jim Sinclair‘s “don’t mourn for us” was published in 1993). There were multiple autistic led online discussion groups, with perhaps the largest being Alex Plank’s It was the heyday of blogs and there were blogs by and about autistic people. It wasn’t uncommon to find out that a person who had very important things to say, and who was saying them well, might be nonverbal.

At the same time, this was a time when the anti-vaccine faction of the autism parent community was loud and the press was still looking to them as a primary source on autism related questions.

The anti-vaccine movement gained a lot of power with the false message that there was an epidemic of vaccine-induced autism. Their message was one of fear. There was a “tsunami” of autism that would ruin the world. And it wasn’t just autistics as a group that should be feared; autistics should be feared. I’ll give one example but I could give very (very) many: one anti-vaccine researcher tried to coin the phase “mad child disease” (a play on mad cow disease) to describe autism. Remarkably, a group of autism parents celebrated this researcher. The very sad reality is that these parents placed attacking vaccines on a higher priority than the dignity of their own children. They were willing to promote false and damaging ideas about autism in order to create fear about vaccines.

One of the loudest and most strident voices in that anti-vaccine autism parent group was a man named JB Handley. Mr. Handley founded Generation Rescue on the idea that vaccines caused autism and that healing vaccine injury would cure or treat autism. Mr Handley was a commenter on, and a topic of discussion of this blog since before I even read it.

Which brings us to the image above. Mr. Handley is writing a book with his son. His son has taught him that nonverbal autistics can be brilliant, and they can think, feel and learn like everyone else. And “we’ve” been dead wrong.

I’m very glad that Mr. Handley’s son was able to teach him this lesson. I’m not sure who the “we” are in Mr. Handley’s comment. It certainly doesn’t include the autistics (and many others) who’ve told Mr. Handley this over the past 15 years. Mr. Handley has always considered himself an expert on pretty much everything. Which is to say, I’m not surprised that the idea that autistics (verbal and nonverbal) can feel. That they learn.

This is a step towards acceptance. Something Mr. Handley and his community have mocked and fought for 15 years. For someone like Mr. Handley, admitting a mistake (even if he won’t admit it as his own mistake but that “we’ve” been mistaken) is a huge step.

By Matt Carey

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

No, the CDC didn’t report that masks are ineffective against COVID-19

16 Oct

Let’s put this another way. Masks don’t work if you wear them “all the time” but not when you are in the most risky situations. Imagine sitting down to drinks with your friends and saying, “Hey, I wore a mask all day. So I’m safe drinking my beer and talking to you all while in this room filled with other people who aren’t wearing masks”.

Do you wear a mask? How would you characterize your mask wearing? By that I mean, do you wear your mask all the time? Often?

Let’s say you said “all the time”. A lot of people, heck the majority of people say that. Do you wear your mask when you sleep? When you eat? All the time when you are at home? Of course not. You assume by “all the time” to mean “all the time when I’m out and about” or something like that.

Keep that in mind.

Most Americans do wear masks. One recent survey claimed 95% of Americans claim to wear masks. In that survey, 44% said they “always” wear masks.

In a Gallup survey, taken between June 29 and July 5, results showed nine in 10 people said they had worn a face mask at some point in the last week. However, regular adoption was lacking, with 14 percent saying they never wore them and four percent saying they rarely used and 11 percent saying they sometimes used them. Twenty eight percent said they “often” wore them, while 44 percent said they wore them all the time.

–Gallup Survey

The CDC are very interested in what causes the novel coronavirus to spread. And, since they expect masks to have an impact, you wouldn’t be surprised if they asked about mask wearing behavior when they do their studies.

Such is the case in the recent CDC study: Community and Close Contact Exposures Associated with COVID-19 Among Symptomatic Adults ≥18 Years in 11 Outpatient Health Care Facilities —United States, July 2020.

The CDC led team interviewed people who were sick (sick enough to show symptoms) and people who weren’t. They found three important factors differed between those who were sick and those who weren’t:

  • Sick people were more likely to have a close contact who was also sick
  • Sick people were more likely to have gone to a restaurant
  • Sick people were more likely to have gone to a bar or coffee shop

These were big effects. Those who fell ill were about 3 times as likely to report a close contact who was also ill. And often that close contact was a family member.

Close contact with one or more persons with known COVID-19 was reported by 42% of case patients compared with 14% of control-participants (p<0.01), and most (51%) close contacts were family members.


If you asked me, I’d tell you I wear a mask all the time. Am I wearing one now? No, I’m at home with my family. Was I wearing one 8 hours ago? No I was asleep. If someone here is infected, I’m exposed. Even though I wear a mask “all the time”. Because I understand the question to be not literal “all the time”. If I’m outside, especially when other people are present, I wear it all the time.

People who got sick were also much more likely to have gone to a bar, coffee shop or restaurant. Again, this isn’t a small effect. People were 2-4 times more likely to get sick if they went out like this.

First off there is the obvious: if you are in a bar or a restaurant you are probably not wearing your mask, even if you tell a researcher you wear them “all the time”. All the time may mean to you “well, of course not when I’m eating”.

But there’s another factor in play here. If you are at a restaurant you are around other people who are taking their masks off. They are eating too. The CDC asked the people in the study if the other people in the bars/coffee shops/restaurants were wearing masks and social distancing. Here’s that table (click to enlarge):

table from CDC study
Table from CDC report

People who went to restaurants where other people followed social distancing (perhaps seating people farther apart) and mask recommendations (perhaps wearing a mask while not eating/driking) were less likely to get sick.

Let’s put this another way. Masks don’t work if you wear them “all the time” but not when you are in the most risky situations. Imagine sitting down to drinks with your friends and saying, “Hey, I wore a mask all day. So I’m safe drinking my beer and talking to you all while in this room filled with other people who aren’t wearing masks”.

Sadly masks have become a political talking point, and people are and will die because of it. I first saw this in “The Federalist” which chose to misinterpretation of a CDC study to claim that “A Centers for Disease Control report released in September shows that masks and face coverings are not effective in preventing the spread of COVID-19, even for those people who consistently wear them.”

Since then, the President was heard repeating the misinformation. With that in mind it was clear it had become a talking point so I checked with an old friend of the blog, Ginger Taylor. She’s an anti-vaccine activist who has been following that movement’s drift into becoming an arm of the alt-right. I knew she’d be on this. It’s misinformation and it’s dangerous and it’s an alt-right talking point. And I wasn’t disapointed. Here she is sharing the story by Tucker Carlson (Fox News entertainment personality). I know understanding scientific reports is not something Ginger does well, but after years of complaining that no study is a real “vaxxed vs unvaxxed” study, you’d think she’d know this isn’t a “masked vs unmasked” study. But, then again, perhaps she does understand it. The truth is not Ginger’s best friend.

So, yeah, this bit of misinformation is now a talking point. An anti-mask talking point. It’s a lie, but for some reason masks are a political statement.

That said, masks work. They prevent the spread of airborne diseases. Let’s take the time to point out this includes spit droplet born diseases. Keep that in mind, you ingest other people’s spit often. We all do when we are talking to each other. Most of the time this isn’t such a big deal, but really, we are talking about a simple way to keep droplets of spit with coronavirus in them from travelling from your mouth to another person’s mouth. Explain to me exactly why that’s a bad thing? Or so difficult to understand?

Hey Ginger? I wonder how many times over the past 20 years you’ve invoked the story of Semmelweis teaching us that germs spread through contact and washing hands prevents disease spread? But, hey, let’s abandon germ theory now, right? And that whole cry of , “let’s find non pharmaceutical ways to keep people healthy?” A mask vs. a hospital stay…gee, even you can do that math and work out which involves more involvement of “big pharma”. Seriously, if masks were being promoted by other anti vaccine activists, you’d never criticize their use. I’ve never seen you show that sort of backbone.

Hey Tucker? I know we aren’t supposed to take your show as fact and all. Your own lawyers say so (You Literally Can’t Believe The Facts Tucker Carlson Tells You. So Say Fox’s Lawyers). But, really, is this the hill you want your audience to die on?

I’ll leave with this one observation that apparently also didn’t register with the likes of Tucker Carlson. The vast majority of Americans wear masks. Over 80% report wearing masks often or all the time. How often do Americans agree on anything to that level these days? Why are you guys fighting against the choice of the American people?

Anti-vaccine activist on the Proud Boys: “They seemed like really good guys”

7 Oct

Over the past four years many extremist and conspiracy theorist groups have been connecting and even forming alliances. The pandemic and the shelter in place orders have probably increased this trend, with anti-vaccine activists and other conspiracy groups joining with extremist groups in protests online and in person.

This isn’t entirely new. Recall a few years back when Andrew Wakefield’s faux-documentary (propaganda film, really) Vaxxed was touring the U.S.. One spokesperson they collected on the way was a holocaust denialist (Why are Robert Kennedy Jr. and Wakefield’s Vaxxed team allying with someone who spreads holocaust denialism?).

With that in mind, one shouldn’t be surprised to see that a prominent anti-vaccine activist has come forward to defend the Proud Boys. In case you haven’t heard of the Proud Boys, they made big news (always a win for extremists/fringe groups) when they were mentioned during the Presidential Debate recently. Donald Trump, stalling on calling out white supremacists, asked for a specific group to be named. Joe Biden obliged and named the Proud Boys (read about the Proud Boys on the Southern Poverty Law Center website here ).

Here is a post from the Facebook feed of Joshua Coleman (click to enlarge). He states:

They [the Proud Boys] seemed like really good guys. Over the last few years I’ve met many more and seen them at events they either organized or attended.

–Joshua Coleman

It’s unclear why he was at the events the Proud Boys organized or attended. But a key word there is “organized”. It’s not just “hey, look who showed up? Those really good guys the Proud Boys are here!”. No, it’s “I’m going to this event the Proud Boys have organized.

Ok, but who is this Joshua Coleman guy anyway? There are many anti-vaccine activists out there, who is he? He was part of the Vaxxed tour, driving around with Polly Tommey touting Andrew Wakefield’s monstrosity of a film. Since then he’s been a very active part of the anti-vaccine movement, arranging events and protests. I won’t link to them as I’ve given him enough attention, and, as I noted above, extremists love attention. A quick online search will get you a lot of information.

So, we have part of Wakefield’s team, a leader in the anti-vaccine movement attending “events” organized by the “really good guys” the Proud Boys.

I keep thinking I’m done losing respect for these people and this movement. And they keep going lower and proving me wrong.

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