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Want to understand acceptance? Listen to I am what I am

8 May

This weekend I saw another production of La Cage Aux Folles. The song “I am what I am” has long been one of my favorites, and the lyrics are posted in my kid’s room. I’ve posted this before, with some explanation. This time, I invite you to listen, read the lyrics and, if you don’t understand why I feel this is so fitting: ask.

I am what I am
I am my own special creation.
So come take a look,
Give me the hook or the ovation.
It’s my world that I want to take a little pride in,
My world, and it’s not a place I have to hide in.
Life’s not worth a damn,
‘Til you can say, “Hey world, I am what I am.”
I am what I am,
I don’t want praise, I don’t want pity.
I bang my own drum,
Some think it’s noise, I think it’s pretty.
And so what, if I love each feather and each spangle,
Why not try to see things from a diff’rent angle?
Your life is a sham ’til you can shout out loud
I am what I am!
I am what I am
And what I am needs no excuses.
I deal my own deck
Sometimes the ace, sometimes the deuces.
There’s one life, and there’s no return and no deposit;
One life, so it’s time to open up your closet.
Life’s not worth a damn ’til you can say,
“Hey world, I am what I am!”


By Matt Carey

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One line from the CDC Autism Prevalence report you will likely never see quoted

28 Apr

The CDC came out with an autism prevalence estimate a few days ago. There have been a number of news stories on the subject and the usual attempts by credulous websites to use this to claim that vaccines cause autism.

It’s right there at the top, in the interpretations section of the abstract:

Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States

The Age of Autism blog (as noted already, always a good place to look for people getting it wrong on autism) ran a piece “Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?” Because, you know, claiming an epidemic is in their mission statement.

SafeMinds, another organization promoting the failed “vaccine-induced-epidemic” idea of autism wrote:

Baltimore, MD, April 26, 2018 – SafeMinds, along with other national autism advocacy organizations, sent a letter today to Department of Health and Human Services (HHS) officials demanding a meeting within the next 30 days to discuss the creation of a Federal Autism Strategic Plan to address the nation’s autism crisis. The urgent letter follows the release of a report this afternoon by the U.S. Centers for Disease Control (CDC). The CDC report found that autism is now diagnosed in one in every 59 American children, representing 2 ½ times more autism in 12 years and a 15 percent increase in just two years.

First, there is an Autism Strategic Plan. A member of SafeMinds helped craft it with HHS while she was on the Interagency Autism Coordinating Committee. She voluntarily decided not to pursue another term on the IACC.

Second, your reason is that ” The CDC report found that autism is now diagnosed in one in every 59 American children”. The CDC told you explicitly in the first few paragraphs that can’t be said.

But I do appreciate that you are implying no epidemic among children. You clearly state that the rate is the same for all American children, not just the 8-year old children of the CDC study. Or did you miss that important point?

So, good luck with that letter. I’m sure your readership will not notice the problems with your logic, but HHS will.

There are more examples, but these make the point.


By Matt Carey

Americans are still failing to identify and serve minority autistic children

27 Apr

The CDC recently published another autism prevalence study. It’s 23 pages long and has 26 authors, took 2 years to put together and no doubt cost millions of dollars. Out of that, the one fact from it that will be quoted is simply–the autism rate is now at 1.68%, or 1 in 59.

There’s so much more. But sometimes focusing on one simple message makes more impact than a lengthy analysis. So I’ll pick my own simple message (of my own):

we are failing to identify minority autistic children. And with that, we are failing to provide them the appropriate services and supports they deserve as citizens and residents of the U.S.

We can and we should do better.

Here is table 3 from the report:

The estimated autism prevalence for Hispanics is 1.4%. For Whites, it is 1.7%. Thousands of Hispanics and other minorities are being missed. Overall, thousands of autistic children, and many, many more adults, are being missed. But that’s another discussion.

By Matt Carey

What Autism Awareness Means

20 Apr

We are often told to be “aware” of autism. But what does that do, really? With awareness comes acceptance. And for my son acceptance means being able to live his life.

A few years ago, I took my son for a walk to our local shopping center. We have done this every weekend day since he was in a stroller. This time we passed Nicco’s hardware store, where they always keep a stock of the American flags my son likes to buy. When they see us pass, they often start a fresh batch of the free popcorn he loves.

At the donut store, Mary and Monica helped him learn to buy things and to wait his turn. We’ve been doing this for years, but they never lose enthusiasm. At the bagel store my son walked right up to the counter as where Sylvia handed him his favorite cinnamon raisin bagel with her traditional “this is for you!” To this day, the workers at the bagel store hand him a bagel with a smile as he walks in. He eats while we wait in line to pay.

At our local market, I got distracted, as parents are wont to do. And my son wandered off, as children are wont to do. I ran to the door panicked because I had to make sure he was safe from traffic. Once I was pretty sure he was still in the store, I ran from aisle to aisle, yelling his name. Still scared. And what I found was a neighbor smiling at me, pointing and saying, “he’s over there”.

She knew us. She was aware that he needed support. When she saw him alone, she kept an eye on him.

He was 7 years old then. He’s 14 now. He still needs a lot of support, and always will.

When my father was growing up, people like my son would be institutionalized. When I was growing up, people with disabilities were hidden. Now that my son is growing up, he lives in a time and a community in which people are aware that he needs support. They accept him and know he deserves respect.

Awareness means my son can be in a community. Acceptance means he can live his life.

With a Perspective, this is Matt Carey.

The above was given as part of the Perspectives program on KQED radio. The original, complete with audio, can be found on the KQED website at What Autism Awareness Means

Merry Christmas

25 Dec

Merry Christmas, little one. I love you.

I am so proud of you. You bring me great joy and I am glad you are my family and part of my life.

Remember the fake supplement OSR #1? It’s still being developed

5 Apr

A few years ago a fake supplement was marketed to autism parents for use on their children. The “supplement” was called “OSR #1”, OSR for “oxidative stress releif” or something to that effect. The name was a bit of a dodge, just as packaging it as a supplement rather than a drug was a dodge. It was/is a chelator. The chemical used–a novel synthetic chemical–was developed for use in environmental heavy metal polution.

This is obvious but worth noting: one can not “supplement” one’s intake of a chemical that humans have never been exposed to before.

If you remember OSR #1, you probably remember that the drug was pulled from the market. But you may be surprised to hear that it may be about to resurface.

The FDA found out that this chelator, this drug, was being sold as a supplement (which avoids thorough tests for safety and efficacy). The FDA sent the Boyd Haley, whose company was selling the “supplement” a warning letter that made it very clear:

The claims listed above make clear that OSR#1 is intended to affect the structure or any function of the body of man or other animals. Accordingly, OSR#l is a drug under section 201(g)(1) of the Act, 21 U.S.C. § 321(g)(1). Disclaimers on your website, such as “OSR#l® is not a drug and no claim is made by CTI Science that OSR#1® can diagnose, treat or cure any illness or disease,” do not alter the fact that the above claims cause your product to be a drug.

Moreover, this product is a new drug, as defined by section 201(p) of the Act, 21 U.S.C. § 321(p), because it is not generally recognized as safe and effective for use under the conditions prescribed, recommended, or suggested in its labeling. Under sections 301(d) and 505(a) of the Act, 21 U.S.C. §§ 331(d) and 355(a), a new drug may not be introduced or delivered for introduction into interstate commerce unless an FDA-approved application is in effect for it. Your sale of OSR#1 without an approved application violates these provisions of the Act.

emphasis added.

Even as a supplement, OSR#1 appeared to be mislabled. Customers were not fully informed of potential side effects, per the FDA letter:

Your website states that” [s]ome reports of temporary diarrhea, constipation, minor headaches have been reported but these are rare and the actual causes are unknown,” as well as “OSR#1 is without detectable toxicity” and “OSR#1® … has not exhibited any detectable toxic effects even at exceptionally high exposure levels.” However, animal studies that you conducted found various side effects to be associated with OSR#1 use, including, but not limited to, soiling of the anogenital area, alopecia on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas, and lymphoid hyperplasia. Based on these animal studies and side effects known to be associated with chelating products that have a similar mechanism of action to OSR#1, we believe the use of your product has the potential to cause side effects, and the before-mentioned website statements falsely assert that the product does not have the potential to cause side effects. Therefore, these statements render your product’s labeling false or misleading. As such, OSR#1 is misbranded under section 502(a) of the Act, 21 U.S.C. § 352(a).

Mr. Haley’s company reportedly sold about $1.5M of OSR#1 as a supplement from his company CTI Science. I saw reports that OSR#1 was selling for about $2/pill so that’s maybe 750,000 pills. That’s a lot for somethiing untested for safety or efficacy. CTI appears to be a shortened version of the original name of the company: Chelator Technologies, Inc.. Chelators are drugs, not supplements.

All this said, CTI Science doesn’t appear to exist any more. If you go to the old website, www.ctiscience.com, you get directed to a non operating website, http://ermesmedical.com/?reqp=1&reqr=.

But obviously I haven’t written all this to say that CTI Science doesn’t exist. It’s not ermesmedical (as their link would suggest), it’s EmeraMed. No idea why they have this confusion over ermesmedical/emeremed. That said, Emeramed describes themselves as:

EmeraMed Limited is a biotechnology firm developing the antidote – heavy metal chelator and antioxidant – Irminix® (Emeramide). The Company is working to obtain marketing authorization in the EU and the US for the treatment of mercury toxicity. Phase 1 and Phase 2a clinical studies have been performed.

They have offices in Ireland, Swedend and the US (Kentucky–home of Boyd Haley). But no mention on the website about who is involved with the company, which I find rather odd. They note that the drug is not yet approved, but that they may be able to supply it to people under an “early access program”. Yes, why wait for actual approval and confirmation of safety and efficacy. This would be for use as a chelator–no mention of work as an autism treatment. There never was a good reason to use this for autism. Boyd Haley was long a proponent that autism is a form of mercury poisoning. Put simply, Boyd Haley was wrong. Very clearly wrong.

Mr. Haley and others may not be named on their website, but on SEC documents, he is named as part of Ermes Medical. If I read this document correctly, they have raised over $3.5M for the company.

As noted in their literature, they have been involved with clinical trials. For mercury poisoning. In Ecuador. No small irony there: many of Mr. Haley’s supporters complain that “big pharma” performs their clinical trials (or experiments, as his supporters would characterize them) in developing countries.

They are still pursuing patents for the treatment neurological disorders. No trial that I have found. Likewise for evidence of efficacy in humans. But a patent application.

A similar patent for treatment of COPD.

Should OSR#1 (under whatever new name) be approved for chelation, we can expect that it will return to the fake autism treatment world. Many still subscribe to the failed idea that autism is caused by mercury poisoning. That idea, pushed by Mr. Haley and others, was based largely on the idea that as mercury exposure from infant vaccines increased, so did the rate of identified autism. Biologically the idea was clearly wrong (autism and mercury poisoning are not similar). Also, even though mercury was removed from infant vaccines, autism rates have not fallen.

All that clear logic said, there still are people who chelate as an “autism treatment” and a new product will almost certainly cause a spike in the numbers trying chelation.

So, yeah, OSR#1 is gone. Except it may return soon under a new name. And likely a higher price tag. And it still won’t be a real treatment for autism.


Matt Carey

An open letter to William Shatner on autism awareness

3 Apr

Mr. Shatner,

I see that you have been involved in a rather large tweet storm this weekend, focusing on your support for Autism Speaks. My guess is you would agree that 140 characters at a time is far too limiting to take on a complex discussion. Open letters such as this are as well, but at least I can go into a bit more detail. I hope you take the time to read and at least try to see at least my side of this discussion.

First off, yes, I am part of the autism communities. My kid is autistic. I try to guard my kid’s privacy so I don’t give out a lot of details. But let me just say this: if people tell you, “Obviously his kid is ‘high functioning’ so he doesn’t understand what ‘real’ autism is about”, they are wrong.

Let me add: anyone who takes the position of discounting another’s voice based on some measure of “severity” of autism is harming our communities. My kid’s challenges are very different, but no less real than those of self-advocates you are hearing on twitter. Just as my kid’s challenges are very different, but no less real, than those of the other kids at his school who will likely never be on twitter.

Another way to put this is this: people will likely tell you this is a divide between parents of kids with “real” autism vs. self-advocates with “mild” autism. For what it is worth, some of my kid’s strongest allies are those self-advocates you are hearing from. Some of those who have done the most damage are other parents who, well meaning as they are, have increased the stigma of autism.

I haven’t seen that misconception (“real” vs “mild” autism) in your tweets (I haven’t read them all, but I haven’t seen it), but I have seen others. For example:

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There is a difference, a big difference, between autism awareness and promoting Autism Speaks. “Light it Up Blue” isn’t an autism community effort, it is an Autism Speaks effort. Most autism organizations don’t promote “light it up blue”. I didn’t find one in my search yesterday other than Autism Speaks. There probably were some, but major organizations were not a part of “light it up blue”.

This is why people focused on the avatar you used on Twitter yesterday. It was an Autism Speaks “light it up blue” logo. The blue light bulb logo with the Autsim Speaks puzzle piece.

So, why would supporting Autism Speaks spark a strong response? I bet there are as many answers (more even) that tweets directed at you. But let me tell you about a few reasons. First on the list for me is the fact that over the years Autism Speaks has used truly bad depictions of autistics in their promotional materials. Their “I Am Autism” video is an example of this. It’s the sort of inspiration at the expense of the disabled that we saw in generations past. It presents autism as a monster that steals children. It presents the autism community as all the allies, but not the autistics. Seriously, read the transcript on who the community is.

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.

This is a systemic problem in the autism community: considering it a community of the allies, not the autistics.

The I am Autism video is old, and I will admit that Autism Speaks has evolved since then. But they aren’t where we need them to be yet.

I saw that people tweeted to you about how Mr. John Robison, an autistic self-advocate, left Autism Speaks. He was at the time the first and only autistic in an important position in Autism Speaks. Please take the time to read his article (in the link I just gave) about his reasons for leaving.

Analogies are always flawed, and coming up with a good one here is difficult. But imagine that the NAACP were staffed by well meaning white parents who had adopted African American kids. That African American’s themselves didn’t have a voice in their own advocacy organization. That they didn’t listen when an African American voiced a different opinion than theirs.

Please don’t fall for the false dichotomy of whether it should be parents or self-advocates who direct autism advocacy. It should be both. There will always be parents and siblings and others who hold the place at the table for autistics who can’t be there themselves (by the way, this includes many self-advocates. But that is another discussion). But we as parents have to work with the spectrum of our community, or we are only advocates for our own child not the whole. We need to work with adult and non-adult self-advocates. Not in spite of our differences in focus, but because of our difference in focus.

I have seen you respond to people that, instead of tweeting at you, perhaps they should focus their attention on organizing their own advocacy efforts. Many have. By the way, tweeting one’s opposition to your actions is advocacy. That said, one of the issues with Autism Speaks is that they have corportatized autism advocacy, branded themselves as the one-stop autism adovcacy location, to the point that local dollars are not available for small, community based advocacy efforts.

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Case in point: you chose the Autism Speaks logo, the Autism Speaks motto (light it up blue), as being a generic autism advocacy effort.

Again, this is a big reason why that logo, that icon, garnered the reaction you received.

Lastly, let me point out that over its history Autism Speaks has promoted the failed and damaging “autism is a vaccine epidemic” idea. Again, they have evolved over time. But they still have far to go.

The vaccines-cause-autism idea is so incredibly damaging to our communities, to autistics, that I could easily triple the length of this piece by discussing it. Let me try to be brief. First off, it’s wrong. Simply and clearly, it’s wrong. You will find parents who believe it, who promote the idea. That doesn’t make it correct.

Listen to the parents who promote the vaccines-cause-autism idea. Hear and feel their pain. And ask yourself, if you could help them to not feel that pain, wouldn’t you? If what you are doing is causing more people to feel that pain, wouldn’t you want to change?

The path to stopping that pain is by getting good information out. Accuate information. Vaccines do not cause autism.

You probably woudn’t believe me if I told you all the fake “cures” sold to autism parents under the guise of “healing vaccine injury”. Chemical castration. Bleach drinks and enemas. Those are but two of the more abusive. There are many more, fake cures which tend to have one thing in common (in addition to being worthless): costing families lots of money. But if you say your “treatment” is for “vaccine injury”, no-one in the vaccines-cause-autism community will speak out against you.

That’s where Autism Speaks could and should step up. Could and should make a difference for our communities. Some have tried, but as an organization, this has been a spectacular failure for Autism Speaks.

Rob Ring, Chief Science Officer of Autism Speaks (which touts itself as a science based organization) was very clear about this. He made the statement below on the Autism Speaks website:

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.
Rob Ring

Here’s the thing–Bob Wright vetoed that message. First he put his own message up together with Dr. Ring’s. Then he disappeared Ring’s message.

I hope you took the time to read this. I hope you can take the time to understand the positions here. I don’t ask you to agree, but to understand. I don’t see that so far. Understanding–it’s a form of acceptance. Understand the positions of the people who disagree with you. Accept that they have a different point of view. Even if they are sometimes harsh.


By Matt Carey