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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.

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By Matt Carey

You know, “Dr. Bob”, minority health disparities are HUGE in the autism community.

1 May

Robert “Dr. Bob” Sears is advertising himself again on the TacaNow blog. He’s telling us all about how he was an early adopter on biomed approaches to autism and how it’s all about listening to the parents. He tells us about how it all started with a parent asking for a prescription for an antifungal. No discussion of actually testing the kid for a fungal infection, just the standard story: parent asks, DAN doctor writes prescription story, DAN doctor takes credit for any gains, and no mention ever of any adverse reactions.

So, clearly, a case of same old/same old. So why write about it here? Because once again “Dr. Bob” shows how out of touch he is with the needs of the autism community. Oh, sure, he knows what parents at conventions like AutismOne want to hear (snarky remarks about vaccines and, you, the parents are always right). But what is one of the biggest problems in the autism communities right now? And has been for, well, ever? Disparities in diagnosis and access to treatment.

Here’s an example: racial and ethinic minorities are vastly under diagnosed and under served. In my state (same as “Dr. Bob’s”) if you are Hispanic, you are about 70% less likely to get special education services under the autism label as if you are white. I’ve plotted it out for my district that that ratio has remained basically constant for the past 14 years (as far back as the data are available).

I’m sure “Dr. Bob” can rattle off the latest CDC autism prevalence figures, or at least some of them. But if one actually reads the report, what does one find?

Non-Hispanic white children were approximately 30% more likely to be identified
with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.

Given that, take a look at what Dr. Bob wrote on the TacaNow blog:

Yet, there is a shadow over all this success: April was supposed to be Autism Awareness Month. Did anyone even know? I checked the CDC website, and they proclaim April to be National Minority Health Month, with the catch phrase “Learn about CDC and HHS efforts towards eliminating health disparities,” as if THAT is the most important health crisis facing America today.

If “Dr. Bob” really believes that biomedical approaches are so helpful, why discount the need for outreach to minorities? Really, we have a HUGE problem with under diagnosis of autism in California among minorities. But you seem unaware of this.

One does wonder how many minorities, especially those with low incomes are served by the Sears clinic. I grew up in “Dr. Bob’s” home, Orange County, going to school along side farmworker kids. There’s a huge population of underserved minority kids there.

As an aside, here’s how one does an internet search, “Dr. Bob”. Top hit is Announcement: Autism Awareness Month and World Autism Day — April 2015. But that’s an MMWR (Morbidity and Mortality Weekly Report) from the CDC, and as a doctor you must follow those, right? Especially since the MMWR’s include, say, information about the recent California measles outbreak which you downplayed.

Here, while we are at it, let’s do another google search. The word “minority” on the “Dr. Bob’s” family website (askdrsears.com).

Gee, 5 hits. One on how only a minority of families skip the MMR vaccine. Only one on racial/ethinic minorities, an article on lice.

No hits for “Hispanic” on the Sears family website.

“Dr. Bob”, if you want to pretend to speak for the autism communities (you don’t), at least show us the respect of acknowledging one of the big issues in our community: under served and under diagnosed populations.

Of course, to acknowledge these points you have to also acknowledge that autism isn’t always diagnosed, and that we need awareness to get diagnoses and services to these communities.

Which is to say, you have acknowledge that autism “rates” are under counts. And that doesn’t fit with your ideas on vaccines causing autism, does it? Or did I misread you when you wrote that you were waiting to “proclaim from the rooftops” that the MMR causes autism? (odd how you edited the original version of that article to remove that comment, isn’t it.)

Seriously, “Dr. Bob”. Get out of the corner of the autism community you profit from and take a hard look at what we really need.

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By Matt Carey

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