Deadline is TOMORROW to provide input to the IACC for the Strategic Plan. DO IT NOW!

28 Jul

The IACC (Interagency Autism Coordinating Committee) is revising the Strategic Plan for autism research. This is THE document that they produce that can influence how autism research money is allocated.

Do you need something from autism research (almost certainly the answer is yes). Let the Committee know what specifically you want. Do you want better services and educational plans for minimally verbal students? Better job supports for adults (adults who have high support needs or “just” significant support needs)? Let them know.

This document will shape what we can hope to get in autism research. It is worth spending a few minutes. Go here: https://iacc.hhs.gov/meetings/public-comments/requests-for-information/2016/strategic-plan.shtml. Go now.

Here is the post I wrote about this a few weeks ago:

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.

Why?

Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.

1%.

That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?


By Matt Carey

Irish Examiner: US film studio threatens to sue autism-rights advocate

26 Jul

As I wrote about yesterday, Andrew Wakefield’s “Vaxxed” team, led by distributor Philipe Diaz of Cinema Libre Studio, threatened Fiona O’Leary (an autistic adult who is also the parent of autistic children). Well, it looks like the story has been picked up by the Irish Examiner.

The article starts:

A US film studio has threatened to sue an Irish autism-rights advocate if she continues to speak out against its controversial anti-vaccine documentary, Vaxxed: From Cover-Up to Catastrophe,.

West Cork-based mother, Fiona O’Leary, who wants to block the film’s release in Ireland and Britain, said she was outraged to receive a legal letter from California-based Cinema Libre Studios over the weekend.

Read the rest at US film studio threatens to sue autism-rights advocate


By Matt Carey

Cinema Libre Studios and Andrew Wakefield’s Vaxxed team threaten autistic autism mom

25 Jul

I am hesitant to write this. Not hesitant because I have any doubts that the actions of Cinema Libre Studios and Andrew Wakefield’s team are wrong. No, hesitant because it has all the hallmarks of people trolling for attention and free publicity. I do not like giving people like Andrew Wakefield or Cinema Libre Studio attention.

That said, I can’t let that stop me from speaking out. In this case Cinema Libre Studios, who are distributing the faux documentary “Vaxxed”, have sent a letter to Fiona O’Leary threatening legal action:

Vaxxed-24-Cinema-Libre-threat-to-sue-Fiona-Oleary

As you can read, the letter is not just on behalf of Cinema Libre, it is also on behalf of Andrew Wakefield, Polly Tommey and Del Bigtree (the main voices promoting “Vaxxed” and it’s misinformation).

Philipe Diaz (Cinema Libre Studios CEO) demands that Fiona not only “cease and desist from interfering with distribution of the film” (while giving no examples of actions of her interfering), but also demands that she “cease and desist…from making any statement to any person with regard to the film, Cinema Libre Studio and/or Autism Media Channel, its agents, representatives and/or employees, including Dr. Andrew Wakefield, Del Bigtree and Polly Tommey.”

Apparently Philipe Diaz is not above hypocrisy. Recall that the marketing campaign for Vaxxed relied heavily upon their ouster from the Tribeca Film Festival. They erroneously claimed that Tribeca “censored” Vaxxed and that Vaxxed is “the film they don’t want you to see”.

So, a film festival chooses which films to give laurels to (and which to not give laurels to) and this is “censorship” and bad. But someone criticizes the film and the film makers and this is grounds for legal action.

In case you weren’t aware, Fiona O’Leary is an autistic adult. She is the parent of 5, two of whom are autistic.

What is the most common theme you will hear from Andrew Wakefield? That’s right, “listen to the parents. The parents are right.”

Well, except for the majority of us who disagree with Wakefield. Then we parents are ignored or even threatened, right Andy?

When Vaxxed was rightfully removed from the Tribeca Film Festival and other festivals, Philipe Diaz erroneously called those actions “… a slap in the face to the First Amendment.” But when faced with criticism, Diaz demands silence.

Since you apparently don’t understand free speech, let’s explain this one to you, Mr. Diaz. Tribeca didn’t try to stop you showing your film everywhere. They just said that your film would not get shown at Tribeca and get Tribeca Laurels. Just as if you were responsible enough to have not picked up Vaxxed and not put Cinema Libre’s name on it, that wouldn’t be an infringement of free speech.

Telling someone they can’t even talk about you, your company or your clients…that’s a clear attempt to quash free speech.

Polly Tommey, so you won’t judge parents who murder their autistic children, but you will have your distributor send letters threatening legal action to parents who don’t agree with you?

There’s an example of someone who has their priorities mixed up.

Del Bigtree, song-and-dance man turned pitch-man for bad advocacy and science. You are basically branding “Be Brave” within your little community. Pat yourself on the back, Del, you are so brave. Threatening legal action against an autistic parent of autistic children. Don’t respond to criticism, use lawyers to try to quash it.

OK, Del, be brave. Start discovery now. Send Fiona the financial records for Vaxxed to show her how she could be harming your business. Send her all your group’s communications about Vaxxed and about Fiona so she can see that this isn’t just retaliation. That would be brave.

I don’t think you have the guts. You stand behind your studio and lawyers and send threats and demands. Hell, you didn’t even have the guts to apologize for telling people “now’s the time” for guns.

And to both of you–Bigtree and Tommey–at the end of your nonpology video you thank your followers for stopping an article in the Sunday Times. Really? So the whole “pot calling the kettle black” thing you have going here with faux censorship is a pattern?

You want “be brave”? How about standing up to an unreasonable threat? Because that’s exactly what Fiona did:

Team Wakefield, you could learn a lot from Fiona.


By Matt Carey

Del Bigtree, just admit your mistake and apologize.

20 Jul

I recently wrote about an incredibly irresponsible statement made by a Mr. Del Bigtree (Del Bigtree crosses the line: tells Vaxxed audience “Now’s the time” for guns.)

The problematic statement I focused upon was:

“Anyone who believes in the right to bear arms. To stand up against your government. I don’t know what you were saving that gun for then. I don’t know when you planned on using it if they were going to take control of your own body away.

It’s now. Now’s the time.”

emphasis added.

The statement is clearly bad. And I criticized Del Bigtree for it. Rightly so.

Mr. Bigtree has responded. Full version on his facebook page. As you will see he starts to do the right thing, then he fails. He admits the message is bad, but then tries to defend himself by stating that apparently he was trying to show solidarity for people fighting for gun rights (the statement above has nothing to do with that). He then claims that he was taken out of context and edited (no edits, and one can watch the full video and see the context changes nothing).

Just say it’s a wrong statement and apologize, Mr. Bigtree. It takes courage in being able to admit mistakes and apologize. I greatly appreciate that you distanced yourself from your irresponsible statement, but do it honestly and completely. When people hear you equivocating and making up excuses, it weakens your clarification. It makes it all about you, rather than correcting the message. It makes it easier for people to ignore your clarification.

Let’s address some of the accusation Mr. Bigtree uses to defend himself. Is the Q&A video I took or the statement above taken out of context? Is it edited? No. Mr. Bigtree is just trying to deflect criticism. Want the context? Watch the full video on his Facebook page. Please do–because this is just the worst of a number of really bad statements he made that night. By claiming it is “taken out of context” he is simply attempting to avoid staring his own mistakes head on. As I’ve already said, besides demonstrating a lack of moral fiber there, it weakens Mr. Bigtree’s attempt to distance himself from the message he gave.

And we need his response to be clear and concise.

Since Polly Tommey has difficulty understanding the point I’m making, let’s spell it out. What I did was saying, “I’m judging you Del Bigtree so that people know this isn’t acceptable behavior.”

Which, you have to admit, is far more effective than, “I will sit in the audience and laugh nervously and hope no one takes Mr. Bigtree seriously.” Or, “I will sit next to Mr. Bigtree and look as though I am not even paying attention.” Mr. Bigtree was criticized and he has tried, however poorly, to distance himself from his statement.

As the old saying goes, the first step in getting out of the hole you’ve dug is to stop digging. Del Bigtree just digs and digs. Having rewritten history to make him stand in solidarity with guns rights activists, he then goes on the attack: I am a “troll”.

Del, I’m an autism parent and you know it. I am a scientist and you know it. I have spent more time looking at the facts behind your film than you have. I’m either better at understanding them or more honest than you. I obtained the William Thompson documents from Bill Posey. I gave my analysis–and I gave the documents so that my analysis would be put in context. If context is so important to you now, why hasn’t your team ever released the documents you hold? People can check what I say. You manipulate the situation so that your message can not be challenged.

More to the point, Del, you are being criticized not trolled. This is an important discussion and given the damage you are doing, you should damned well act like an adult. Because right now you are not.

Polly Tommey shows a similar lack of moral fiber by refusing to face head on the criticism levied against her in a different post (Polly Tommey won’t judge parents who murder their disabled children. That’s part of the problem). She defends herself with the statement, “I had a clip of me that made it look like I endorsed murdering children with autism”. It’s a classic straw man argument.

Let’s break this down simply:

There is the act of murder.
There is encouraging the murder.
There is refusing to murderers that they are wrong.

Ms. Tommey, you are in the third category. Let me remind you of your own, unedited, words:

Parents are taking the lives of their children already because they will not leave them in the world as it is today. And I for one will never judge them for what they do.

Why is this statement wrong? Let’s put this in language Mr. Bigtree just used in his attempted defense. A famous poem:

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

People are “coming” for our own. As you say, parents are murdering their autistic children. It isn’t a matter of stopping this before “they come for me”. They are already coming for us as these children (and adults) are our own.

If you will not speak out, your use of that poem is just empty rhetoric.


By Matt Carey

Del Bigtree crosses the line: tells Vaxxed audience “Now’s the time” for guns.

19 Jul

Del Bigtree helped Andrew Wakefield produce a faux documentary called Vaxxed. Vaxxed has been discussed here and elsewhere a great deal, but here is a review from Science Based Medicine if you are looking for more details (Andrew Wakefield’s VAXXED: Antivaccine propaganda at its most pernicious).

The team that made Vaxxed has been using the screenings as a platform to give personal appearances. Below is a clip from one of those personal appearances. I would encourage you to watch for yourself:

In case you couldn’t watch or skipped the video, here are the concluding statements of this particular speech by Mr. Bigtree:

“Anyone who believes in the right to bear arms. To stand up against your government. I don’t know what you were saving that gun for then. I don’t know when you planned on using it if they were going to take control of your own body away.

It’s now. Now’s the time.”

We need to stop here and do what neither Polly Tommey nor anyone in that audience had the guts to do: stand up to Del Bigtree and say No! No, this is not the time to use guns.

This is no joking matter. Bigtree’s comments are at best beyond irresponsible and at worst a call for armed violence.

Whatever was in Bigtree’s mind, why didn’t anyone speak out against this? There was nervous laughter when Bigtree made his call to arms so people can’t claim they didn’t hear or didn’t understand what he was suggesting. Here’s the Facebook post with the full video. There are over 1500 comments. And I can’t find one that says, “No, Del, we reject a call to violence.”

I want to keep this short, but I will repeat myself for emphasis: Del Bigtree crossed the line in a big way with his comments. His comments are reprehensible.

But standing by silent while he makes these reprehensible statements is also wrong.

Ironically Del Bigtree’s facebook page has this as the top saved image:

13529029_1095999520470545_3497709959753327622_n

You fans of Del Bigtree, you need to walk the walk. Stop patting yourselves on the back for being “brave” and show that you are indeed brave individuals. Disavow these statements.

Del Bigtree, you need to dial this back. You need to apologize and take back these statements.

By Matt Carey

Polly Tommey won’t judge parents who murder their disabled children. That’s part of the problem

13 Jul

Let’s just jump right to the video clip. Because it needs no introduction, it is just so wrong:

The speaker is Polly Tommey. Polly Tommey has a long history of bad autism advocacy. When people think of the autism parents who just do advocacy wrong, they are thinking of people like Polly Tommey. She’s been a voice in the “vaccines-cause-autism” movement for a long time. She’s worked with Andrew Wakefield (whose unethical actions in relation to disabled patients at his hospital lost him his medical license. To name one of his many failures). This in itself demonstrates bad judgement and poor reasoning. Recall that Andrew Wakfield fictionalized an account of a parent murdering her autistic child, framing it as an act of love.

But the low point of Polly Tommey’s advocacy career came when she and Andrew Wakefield “helped” a family in crisis. They were working on a reality TV show (that failed to get off the ground) called the Autism Team. The idea was simple: find a family with an autistic child who is in need of help. Swoop in with Team Wakefield, blame vaccines, claim it’s all about gastrointestinal issues, claim to have helped the family and move on to the next. But it all fell apart with one family–that of Alex Spourdalakis. In the autism community, a community were people have extraordinary needs, Alex had extraordinary needs. What he didn’t need was for his mother to be fed false hopes and bad advice, which is what Team Wakefield did. What he didn’t need was for Team Wakefield to walk away to their next project, leaving his mother with nothing when the hope they were sold proved false.

Alex was murdered. Brutally murdered. By his mother and another caregiver. Alex was poisoned. When that failed to kill him, he was stabbed. Repeatedly. His wrist was slit to the bone. By his mother and caregiver. Alex bled to death, leaving a grisly scene for when his father, estranged from the mother, found him.

The fact that Polly Tommey won’t face up to her abject failure with Alex Spourdalakis is not surprising. It is also not surprising that Polly Tommey won’t judge the people who committed that brutal murder, or any other murder by a parent of an autistic child. Not surprising, but an example of the failure of Polly Tommey and other faux autism advocates to actually stand up and lead. How hard is it to say, “No! Murder is wrong”?

Polly Tommey met Alex Spourdalakis. But she “won’t judge” the person who plunged a knife into his chest. She won’t judge the person who poisoned him. She won’t judge the person who slit his wrist.

No, she won’t judge Alex’s murderers. Instead she and Wakefield capitalized on the tragedy to make “documentary”, taking Alex’s story to promote their own agenda.

Ms. Tommey tells us to check the web for stories. I searched for: autism parent murder child. First hit was this article: “Please Don’t Murder Us” Shouldn’t Be Controversial. Autistic people don’t share your views, Ms. Tommey. Autistic people don’t think we should stand back and “not judge” murderers.

Check the web, Ms. Tommey, and you will find the story of Katie McCarron.

katherine-mccarron-2

Katie was murdered by a mother who wanted a non disabled child. Katie, suffocated in a plastic bag by one of the people she most loved. Katie, who should be a beautiful young teenager today. Katie, whose mother felt that vaccinating her child made her responsible for Katie’s autism. Yes, the vaccination myth you, Polly Tommey, promote played into Katie’s murder. While Katie’s mother was suffocating her with a plastic bag, Katie struggled to get free, leaving teeth marks on the bag. She suffered. She feared.

Katie’s family (not counting her mother) loved her. She was valued. Her father stated, “If the measure of a person’s life could be quantified by the number of people that loved them, then Katie, in her brief 3 1/2 years, achieved well beyond all of us.”

Polly Tommey why won’t you judge Katie’s mother? Why won’t you stand up and say, “this is wrong”? Why not stand with Katie’s father?

Keep searching the web, Ms. Tommey and you will find London McCabe.

141108-london-mccabe-2049_a70e9dc1eaec004fa4cd41f4fc43798c.nbcnews-ux-2880-1000

He loved hats. More importantly, he was loved. Valued. His father is quoted as saying that London was his whole world. That he will miss London forever.

London McCabe’s mother took him to a bridge and pushed him over the rail. He fell over 100 feet, landing in a river. He not only had the fall to know that his own mother had pushed him over, he survived the fall, suffering multiple broken bones. He died from drowning. London McCabe suffered. He suffered fear. He suffered pain. He suffered betrayal. His mother had planned the murder, researched how to get off with an insanity defense (which thankfully failed).

But outright premeditated murder isn’t something you can judge, Ms. Tommey?

When you say, “I won’t judge”, you are saying, “autistics have such hard lives that killing them can be justified in some cases”. You were probably thinking of people like Alex, whose challenges were great. But you were wrong. Alex deserved his chance. He deserved his life. But even in your twisted logic, why can’t you bring yourself to judge Katie’s mother? London’s mother?

You and your new friend Del Bigtree are trying to make a name for yourselves with all your talk of freedom we Americans value so strongly. Let me remind you of the Declaration of Independence.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness

All men are created equal. And the first of the “unalienable rights” is life.

Alex Spourdalakis was created equal. He had a right to life.

Katie McCarron was created equal. She had a right to life.

London McCabe was created equal. He had a right to life.

All people with disabilities are created equal. All have a right to life. A many are murdered. Why don’t you stand with them? Why do you stand with those who murder?

The phrase “parental rights” doesn’t exist in the Constitution. As a parent I am not endowed with the right to chose life or death for my child. Until you understand that, all your “freedom” rhetoric is, frankly, just a bullshit public relations effort.

When you refuse to judge, you enable. You make it just that little bit easier for parents and other caregivers to murder.

My kid faces an uncertain future. A future where abuse and murder are real possibilities. My kid needs advocates who will stand up for him and his rights. If I do wrong by my son, damned right someone should judge me. Because if we refuse to judge parents, we say it’s acceptable to commit murder. It’s acceptable to treat autistics as less valuable, less human, less deserving of basic human rights.

It is perfectly acceptable, even important, to judge others when they fail. Ms. Tommey, in case it isn’t clear, I’m judging you right now.

By Matt Carey

Court Clarifies: Hannah Poling case “does not afford any support to the notion that vaccinations can contribute to the causation of autism”

8 Jul

One of the most common arguments in the “vaccines-cause-autism” discussion involves the case of Hannah Poling. Miss Poling is autistic and was compensated by the government through the vaccine-court system. Online discussions usually end up going around in circles with people explaining why the concession doesn’t mean the government has stated that vaccines cause autism, and the other side saying “but it does”.

Well, the Court has clarified the situation. Here is a footnote from the decision in Brian Hooker’s case.

I am well aware, of course, that during the years since the “test cases” were decided, in two cases involving vaccinees suffering from ASDs, Vaccine Act compensation was granted.
But in neither of those cases did the Respondent concede, nor did a special master find, that there was any “causation-in-fact” connection between a vaccination and the vaccinee’s ASD. Instead, in both cases it was conceded or found that the vaccinee displayed the symptoms of a Table Injury within the Table time frame after vaccination. (See Section I above).

In Poling v. HHS, the presiding special master clarified that the family was compensated because the Respondent conceded that the Poling child had suffered a Table Injury–not because the Respondent or the special master had concluded that any vaccination had contributed to causing or aggravating the child’s ASD. See Poling v. HHS, No. 02-1466V, 2011 WL 678559, at *1 (Fed. Cir Spec. Mstr. Jan. 28, 2011) (a fees decision, but noting specifically that the case was compensated as a Table Injury).

Second, in Wright v. HHS, No. 12-423, 2015 WL 6665600 (Fed. Cl. Spec. Mstr. Sept. 21, 2015), Special Master Vowell concluded that a child, later diagnosed with ASD, suffered a
“Table Injury” after a vaccination. However, she stressed that she was not finding that the vaccinee’s ASD in that case was “caused-in-fact” by the vaccination–to the contrary, she
specifically found that the evidence in that case did not support a “causation-in-fact” claim, going so far as to remark that the petitioners’ “causation-in-fact” theory in that case was “absurd.” Wright v. HHS, No. 12-423, 2015 WL 6665600, at *2 (Fed. Cl. Spec. Mstr. Sept. 21, 2015).

The compensation of these two cases, thus does not afford any support to the notion that vaccinations can contribute to the causation of autism. In setting up the Vaccine Act
compensation system, Congress forthrightly acknowledged that the Table Injury presumptions would result in compensation for some injuries that were not, in fact, truly vaccine-caused. H.R. Rept. No. 99-908, 18, 1986 U.S.C.C.A.N. 6344, 6359. (“The Committee recognizes that there is public debate over the incidence of illnesses that coincidentally occur within a short time of
vaccination. The Committee further recognizes that the deeming of a vaccine-relatedness adopted here may provide compensation to some children whose illness is not, in fact, vaccine related.”

While the arguments may still not convince those who wish to believe, the conclusion is clear: The compensation of these two cases, thus does not afford any support to the notion that vaccinations can contribute to the causation of autism.

The Special Masters (basically the judges in this special court) are not only the experts in the decisions (they work every day in the court and write the decisions), they are legally bound by the decisions. If a case sets a precedent, they must follow it. Or they will be overturned by higher courts.

I agree that following the logic takes time and effort, but, again, if you don’t have the time to go through that, the conclusion is very clear. And repeated again for emphasis

The compensation of these two cases, thus does not afford any support to the notion that vaccinations can contribute to the causation of autism.


By Matt Carey

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