There was a big legislative battle here in California last year, where the hell were you faux autism advocates?

26 Oct

This past year we have been fighting a big battle here in California.  We were fighting to restore some of the services funding we’ve lost over the preceding years.  We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase.   And that’s a victory.  The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital.  Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.  These groups claim to be autism organizations. Many of them based on California. We have an individual, a doctor, who claimed to represent “all the autistic students in California”. We had people making a fake documentary dishonestly pushing the idea that vaccines cause autism. Including people who live in California. People, organizations who did nothing to help in this very real effort to improve the lives of people with disabilities in California.

The thing is, these groups and people were very active lobbying for change. They mounted a large, loud, self-destructive effort to stop a vaccine bill here, SB277.

Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill.  Not “lobbying against a vaccine bill and working for a restoration of services.”  Just lobbying against a vaccine bill.

By the way, “lobbying” is a very nice term. They fought, and not in the good sense of the word. They fought a nasty, dishonest fight. And lost. Hard.

Or to put it simply, they were wasting their efforts.  Working like vaccine antagonistics, not people interested in a better life for people with disabilities.

Let’s go through a partial list of those who failed in this effort.

The Age of Autism blog.  Article after article on the vaccine bill.  Nothing on the budget battle that I can see.  They are still going on about their failed efforts, harassing the legislator who spearheaded the bill.  AoA writer Kent Heckenlively lives here in California.  AoA founder JB Handley used to live here.  Kim Stagliano there wrote about the lack of adult services, blaming the lack of of services on people pushing for acceptance.  Here’s the thing, Kim, and sorry for how direct this is.  You’ve wasted over a decade running a blog that diverts efforts away from critical areas.  You aren’t just wasting your time, you are making other people focus their efforts away from making those adult services we so desperately need.  And this is not even counting your whole blog actively denying the existence of undiagnosed autsitic adults.  You know what?  If legislators knew there were a lot more autistic adults they just might be interested in doing something.  Tell them that there’s an “epidemic” coming along, hitting when some other legislator is in office, and they do nothing.

Robert “Dr. Bob” Sears.  You were perfectly willing to advocate, but just not for this bill?  Seriously, you took time off work to fly up to Sacramento and claim you represent all autistic students in California, but only to fight a vaccine bill.  Here’s the thing “Dr. Bob”, autistic students need advocates who are going to get them more services.  If you really think you represent all autistic students, you failed.  Failed hard.  Because I never saw you do a damned thing for kids. I never saw you do anything to help improve services.

Andrew Wakefield, Del Bigtree, Polly Tommey and the rest of you behind the fake documentary “Vaxxed”. Bigtree, you live here. Apparently you have no real connection to the disability community, just the vaccine-antagonistic groups. I hope so, because your disregard for our needs is striking. Wakefield, you have been a self-serving leach on our community for two decades. Expecting you to actually do something of value is something I gave up upon many years ago. Bigttree and Wakefield, you are using us, causing harm and giving nothing in return. Polly Tommey, you should know better. You should be doing something real, not just putting out junk films (apologizing for the brutal murder of Alex Spourdalakis? Shame on you, Polly Tommey). But, hey, you get paid to make a film that attacks vaccines by misrepresenting (let’s just call it what it is, lying) facts.

TACA, Generation Rescue, Jenny McCarthy, National Autism Association (and more): You are based in California. Please tell me I just missed your advocacy to make a real difference for people with disabilities here in California. Please tell me that when I just went over your blogs, I missed the articles calling for your membership to call in to legislators to support the budget increase. You have been downplaying your damaging support of the vaccines-cause-autism failed idea now. Why not actually do something valuable with your efforts? Selling families on fake therapies (stem cell clinics in Cancun, “ion cleanse” to treat autism and the rest), doesn’t count.

It would be one thing if you were just wasting your time fighting losing battles for bad causes. It would be one thing if you were just ignoring the real work that needs to be done. If would be one thing if you were just pulling advocates away from improving the lives of the disabled, pulling them away to attend rallies for useless, failed causes.

At this point you are probably expecting me to say something that amounts to “history will not look kindly on you”. The sad thing is that history will forget you. Will forget the harm you caused. Will forget that when the time came to really stand up and make a difference, you were somewhere else.

No one will remember me either. Or the hundreds of people who really carried the weight of change, both in the budget battle and elsewhere. That’s not what this is about. It’s about making change. Change for the good. I know you’ve convinced yourself that this is, indeed, what you are doing. Good. I also know you won’t change.

The vaccines-cause-autism idea is without a doubt the most damaging belief to have hit the autism communities. The “refrigerator mother” theory is a distant second. The idea that vaccines cause autism causes parents to live a life of shame and guilt for participating in something that didn’t happen. This guilt feeds the charlatans that sell fake “therapies” that are inflicted on children and adults in our community. And as long as these charlatans say “vaccines cause autism”, you never speak out about them. You join them in fake conferences or even host them for conferences where they sell their wares. And you divert advocacy away from topics like the budget battle, from actually improving the lives of people with disability, and instead focus advocacy efforts on fighting a battle you lost over a decade ago.

By Matt Carey

24 Responses to “There was a big legislative battle here in California last year, where the hell were you faux autism advocates?”

  1. Science Mom October 27, 2016 at 05:16 #

    I wish you could see me giving you a standing ovation Matt. Well said!

  2. reissd October 27, 2016 at 17:10 #

    Powerful statement. Another harm of the vaccines-cause-autism myth: it galvanizes people in the wrong direction, for the wrong cause.

  3. Dr. Richard Pan, Calfornia State Senator October 29, 2016 at 23:49 #

    Thank you for calling out the faux autism “advocates.” The fight to increase funding for underfunded services for the developmentally disabled was difficult, but thank to true advocates for people with autism like yourself, we succeeded in appropriating additional funds despite initial opposition. People who opposed SB277 because they falsely believed vaccines were related to autism were no where to be found or heard from when the legislature held hearings on increasing resources for people with autism. As Chair of the Senate Select Committee on Children with Special Needs, the only time my office heard from VAXXED producers Del Bigtree and Andrew Wakefield was when they showed up without an appointment for a publicity stunt to sell more tickets for their propaganda film. I am proud to have supported mandatory coverage for autism services by health plans and increased funding for developmental disability services, and I will continue to work with the autism community to help people with autism reach their full potential.

  4. Kathy Sayers Hennessy November 23, 2016 at 03:16 #

    The narcissism in the antivax movement is never more obvious than in this blog post. Why aren’t the antivaxer parents of children with autism more active in the advocacy movement? They are too busy looking at unproven, unregulated, dangerous cures and blaming “big pharma” for autism. The millions spent on battling SB277 alone could have done this bill’s campaign a world of good. So sad.

    Thank you.

  5. tlundeen November 23, 2016 at 20:02 #

    There is a new book by Dr Lyons-Weiler just out, The Environmental and Genetic Causes of Autism. He says: “I can no longer support the notion that vaccines—as currently formulated—do not cause autism.”

    • Sullivan (Matt Carey) November 28, 2016 at 20:10 #

      I will edit out your link. I am not here to provide a platform for people to spam advertisements for bad books.

    • doritmi November 28, 2016 at 20:51 #

      A quick look at the articles he puts on his site as included in the book shows that he included studies by the Geiers – known for their bad science and chemically castrating autistic children – and other well familiar, bad studies. Basically, it’s not really a new thing: it’s a repetition of the bad science from the anti-vaccine side, in an attempt to create a case that isn’t there.

      Honestly, if he had made a new discovery, he would be sending it to scientific journals.

      Repackaging old bad studies in a book doesn’t change the overwhelming evidence that shows no link between vaccines and autism.

      • tlundeen November 28, 2016 at 21:17 #

        The book reviews over 1,000 studies, and you are concerned about just one of them? Please read it before you make comments like this. Dr Lyons-Weiler is well-credentialed, pro-vaccine, and (from what I can see) a first-rate scientist.

      • doritmi November 28, 2016 at 21:19 #

        No, I’m pointing to multiple studies the book includes that are known as bad science. And that the book accepts as valid.

        Dr. Lyons-Weiler has been repeating anti-vaccine myths for a while. Can you point to a positive thing he said about vaccines in the last year?

        He works at an organization with a board consisting of anti-vaccine activists.

        As to first-rate scientist, that is usually measured by a publication list, not by supporting anti-vaccine claims.

    • tlundeen November 28, 2016 at 21:15 #

      The book The Environmental and Genetic Causes of Autism. is actually pro-vaccine. It just wants them to be safe, which they are not as currently formulated.

      • doritmi November 28, 2016 at 21:17 #

        Promoting the myth that vaccines cause autism by citing to bad studies like the Geiers in no way makes vaccines safer, since you cannot remove a risk that is not there. So no, the book does not make vaccines safer: it just tries to scare people from vaccinating by attributing to vaccines a risk they don’t have.

        Those that work on vaccine safety are the scientists and doctors that actually do serious studies examining their risk and follow the evidence. Not those that draw on conspiracy theories to make untrue claims about vaccines.

      • tlundeen November 28, 2016 at 21:20 #

        “Myth” implies that there is no science, or just invalid science. In fact, there is lots of good science showing the dangers of vaccines. Read the book!

      • Sullivan (Matt Carey) November 28, 2016 at 21:26 #

        It’s mostly free on google books. What makes you think I haven’t looked it over?

      • Sullivan (Matt Carey) November 28, 2016 at 21:27 #

        Why haven’t you included in your comments that you were involved with the book? You appear to be portraying yourself as an independent commenter, when you are not.

        But I guess full disclosure, once again, only applies to those who are not antagonistic towards vaccines.

      • doritmi November 28, 2016 at 21:25 #

        I read the list of references and the blog posts by the author. I think those are pretty clear.

        I recommend against getting your vaccine information from someone who does not have relevant peer-reviewed publications – vaccines are not his area – who cites debunked, bad research as valid, and who has consistently embraced anti-vaccine conspiracy theories. You can read what he writes as entertainment, or to be able to explain to others the problems, but he is hardly a credible source.

      • Sullivan (Matt Carey) November 28, 2016 at 21:31 #

        I suspect that they found that no one cares about this book. The introduction mentions–as they always do–that the author feels he’s brave, writing a book that will draw a huge amount of criticism.

        It’s just another rehash of the same-old/same-old. And no one cares. So, apparently, Mr. Lundeen felt the need to drum up some controversy by bringing it up here.

      • Sullivan (Matt Carey) November 28, 2016 at 21:29 #

        You are done here.

        You have served to prove the point of the article above–your team doesn’t give a damned about the real issues that need to be fought. Read the article–we had a major budget battle, and you and yours did NOTHING to help. You can’t even deign to comment on it here. You just use this as a platform to push a book.


      • Chris November 28, 2016 at 23:28 #

        We are very familiar with Lyons-Weiler:

      • Sullivan (Matt Carey) November 29, 2016 at 00:47 #

        I forgot what a fool he made of himself. Didn’t understand the basic facts of the Thompson story.

        Gotta love the hypocrite. Tries to go with the “nothing is settled in science” story line now, but was all “GAME OVER” in his arguments then. I guess keeping an open mind is for other people. Notice that he never once addresses the actual article in that link? There’s a bunch of data and all he doesn’t even try to respond to it. Just a classic troll: respond to my arguments, not the facts presented above.

        When you have a disabled kid, watching someone just throw away the gift of intelligence is sad.

      • Sullivan (Matt Carey) November 29, 2016 at 00:49 #

        Wow. I had forgotten how childish of a debater he is.

      • Chris November 29, 2016 at 01:00 #

        I discovered this gem:

        The comments are very interesting.

        “When you have a disabled kid, watching someone just throw away the gift of intelligence is sad.”

        Exactly. Though it may not have been voluntary, which makes it even more sad.

      • Sullivan (Matt Carey) November 29, 2016 at 01:36 #

        Tim Lundeen posted a response, which went straight to the “pending” queue. He declined to comment at all on the fact that the above discussion is about his community has ignored critical advocacy efforts in order to focus solely on their failed “vaccines-cause-autism” message. Instead he wants to continue the “this is all about me and this boring book” discussion.

        Said discussion is over. Should Mr. Lundeen wish to discuss topics related to the autism community, especially those topics related to improving the lives of autistics, he is welcome here. Drumming up business for a bad book, that is not welcome.

      • Chris November 29, 2016 at 02:48 #

        “He declined to comment at all on the fact that the above discussion is about his community has ignored critical advocacy efforts …”

        What a pity. When the video of this talk is available in a week or so, he should watch it to get educated by some very dynamic people with autism. They all say they were born with it, and it has its advantages, but please understand them:

        He should pay attention to this young woman, who is married and very active in disability advocacy — she rocks! Mr. Lundeen meet Ivanova Smith:

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