I Speak of Dreams

Is Theresa Deisher a Reliable Expert on Vaccine Ingredients?

This is mostly a guest post, as the majority of the research and writing was done by a medical student, V. Abey. I have added some historical material. 

On October 31, 2019, the anti-vaccine propagandist Del Bigtree invited Theresa Deisher on his show, to promote her unscientific views on fetal cell fragments in some vaccines.

There's a Deisher backstory, which I (Liz) will review briefly. I first became aware of Dr. Deisher through a 2009 post at Respectful Insolence, Thermonuclear stupid about vaccines from someone other than Jenny McCarthy, deconstructing her 2009 white paper, Is Aborted Fetal DNA in Vaccines Linked to Autism? Orac concluded his deconstruction with:

[Deisher’s] strategy panders to the anti-vaccine movement and super-religious conservatives at the same time. Indeed, I grudgingly have to admit that it’s brilliant, from an anti-vaccine PR perspective–except for the fact that the anti-vaccine movement doesn’t really care if “fetal parts” are removed from vaccines because it’s the vaccines they oppose. Still, it may make Dr. Deisher some money. What more could she ask for?

In 2013, Matt Carey at LeftBrain/RightBrain wrote about a petition Dr. Deisher had made to have access to Vaccine Safety Datalink files, to look for a connection between receipt of the varicella vaccine and autism.  The request was denied, in part because Deisher's peers "have found her proposed study to be critically deficient".

In 2014, Deisher published a study, Impact of environmental factors on the prevalence of autistic disorder after 1979. It was (to put it mildly) not well-received. I (Liz) did a summary post of the criticisms at Critical Evaluations of "Impacts of Environmental Factors on the Prevalence of Autistic Disorder after 1979", Deisher et al. 2014   (It was from Genevieve H., writing at Rational Catholic, that I learned that Deisher's son was ill with Burkitt's lymphoma.) Sadly, he died on July 3,  2013. Deisher filed a National Vaccine Injury Compensation Program (NVICP) petition on his behalf; it was denied in April, 2019.

In spring, 2015, Deisher published two papers in the journal Issues In Law and Medicine,

1. Sociological Environmental Causes are Insufficient to Explain Autism Changepoints of Incidence, and
2. Epidemiologic and Molecular Relationship Between Vaccine Manufacture and Autism Spectrum Disorder Prevalence.

In a 2015 blog post, More horrible antivaccine “science” from Theresa Deisher, Orac addressed the dire shortcomings of the "Epidemiologic and Molecular Relationship Between Vaccine Manufacture and Autism Spectrum Disorder Prevalence" paper.

Earlier in  2019, Washington State legislators were considering HB 1638, which  removed personal and philosophical options  to exempt children from the MMR (measles, mumps, and rubella) vaccine required for school and child care entry.  (The bill passed in May. )  The bill  retains medical and religious exemptions and leaves intact personal belief exemptions for all other required immunizations.

On April 8, 2019. Dr. Deisher published an “Open Letter to Legislators Regarding Fetal Cell DNA in Vaccines”.   The open letter  didn't name the legislators -- but as we can see from the above, it's clearly to Washington State legislators, and Dr. Deisher lives in Washington State.

The "Open Letter" was republished by Brian Shillavy's anti-vaccine, anti-science organization, Vaccine Impact, which is part of his publishing stable, Health Impact.

Claim:Theresa A. Deisher, PhD in molecular and cellular physiology from Stanford, is an expert in stem cell research.

Theresa Deisher may have a PhD from Stanford but her claims don’t reflect an expertise in stem cell research - or biology in general. Her mantra is this: that ‘fetal parts’ used in the making of vaccines somehow infiltrate the brain and recombine with neuronal DNA to cause autism. Interestingly, the only ‘evidence’ of such a phenomenon is found in her own studies, statements and open letters.

Health Feedback is a worldwide network of scientists sorting fact from fiction in health and medical media coverage. Shortly after Deisher's Vaccine Impact article was published, three reputable scientists in the Health Feedback network gave the article a close reading, and and deconstructed them, one by one. One of the reviewers concluded:

The claims are so biologically and immunologically wrong that the entire letter is just a condensed list of fake claims and fear mongering that can be dangerous when read by someone that does not understand biology.

In summary, her claim that homologous recombination of fetal DNA in vaccines leads to mutagenesis and autoimmune disease is proven wrong by basic biology. For this to occur, the vaccine DNA has to integrate into cell surface protein genes and express foreign or altered proteins on the cell; for a reaction as prolific as the one she describes, it would have to occur on a massive scale. This is implausible; it’s the reason why gene therapy isn’t exactly a walk in the park.

Deisher, a molecular biologist, would be more than aware of this. Yet, what I (V.) find most distasteful is her data manipulation.  Let's use the infamous paper Epidemiologic and Molecular Relationship Between Vaccine Manufacture and Autism Spectrum Disorder Prevalence for examples.

Point one:  she begins by claiming a “worldwide autism epidemic” - an ableist and untrue claim. She also combined data from three random countries, Norway, Sweden and the UK - a recipe for the ecological fallacy (where inferences about the nature of individuals are deduced from inference for the group to which those individuals belong.)

.Point two: Deisher cultured cells at a Cot1 DNA concentration of 500-750 ng of DNA per 107 cells; she found uptake in some cell lines. It is a subtle deception because, by her own admission, the most DNA was found in Havrix: “276 ng single-stranded and 36 ng double-stranded DNA per vial”. It is certainly interesting that her culture more than doubled the DNA concentration found in vaccines.

Point three: Her graphs use cheap and deceptive tactics to imply significance; for example, Figure 1 has the autism prevalence axis ranging from 0 to 0.6%, whilst the MMR coverage axis ranges from 86 to 95%. Matt Carey of Left Brain/Right Brain normalised the MMR coverage axis to 0 to 100% (as it should be) and the scary curve flattened. Her findings are not remotely analogous to the true scope of DNA in vaccines.

Source: https://soundchoice.s3.amazonaws.com/soundchoice/wp-content/uploads/Deisher-article-2-FINAL1.pdf

Source: https://respectfulinsolence.com/2015/08/24/more-horrible-antivaccine-science-from-theresa-deisher/

Deisher is a conservative Catholic. After she lost her son to Burkitt’s lymphoma, she added childhood cancers to her list of vaccine consequences. I am more than empathetic of her circumstances and I understand how they may have turned a great scientist into a fearful one. But I struggle to find sympathy for Deisher’s deceitful tactics, to demonise a foundation of vaccine development that her own Church finds acceptable.

Who is Mark Green Representing in Tennessee, Exactly? Not His Autistic Constituents, That's For Sure

Mark E. Green is a physician who has also been a politician in Tennessee since 2012.  He served in the Tennessee State Legislature as a Senator since 2012.   In November, 2018, he was elected to represent Tennessee's 7th Congressional District in the US Legislature. 

On December 11, 2018, at a town hall meeting, a constituent  identified herself as the parent of an autistic adult, and asked him about possible cuts to Medicaid funding.

Green did not respond to his constituents' concerns -- remember, both the mother and the autistic young adult are his constituents. What he said, instead, was: 

"Let me say this about autism," Green said. "I have committed to people in my community, up in Montgomery County, to stand on the CDC’s desk and get the real data on vaccines. Because there is some concern that the rise in autism is the result of the preservatives that are in our vaccines.

"As a physician, I can make that argument and I can look at it academically and make the argument against the CDC, if they really want to engage me on it," Green said.

The mistaken idea that vaccines have anything to do with autism causation has been dead for years. No science supports it.

Chasing after mistaken autism causation theories -- especially the vaccine myth -- has robbed the autistic community of much-needed support, for the real needs of autistic people.

Green represents the residents of Chester, Decatur, Giles, Hardeman, Hardin, Henderson, Hickman, Houston, Humphreys, Lawrence, Lewis, McNairy, Montgomery, Perry, Stewart, Wayne, and Williamson counties as well as areas of Benton and Maury counties.

Who is "up in Montgomery County" that has pushed Green to "get the real data on vaccines"?

Tennessee has a Disability Coalition, which developed this plan in 2015. Neither "autism prevention" nor "vaccines" are mentioned in this document.

Surely Green as a State Senator was aware of the Disability Coalition's plan?  Why did he blather on about vaccines and imaginary malfeasance at the CDC?  

What about Autism Tennessee's view of Rep. Green's autism focus?

I want to know more about who funded his Congressional race. 

By the way, my friend Shannon Rosa has a few things to say to Rep. Mark Green. 

May 24, 2010: Andrew Wakefield Struck off the UK Medical Register. He's Still Harming Autistic People

Today in history: 2010: Andrew Wakefield struck off the UK's register of physicians.

Sarah Boseley,  The Guardian's health editor, wrote on May 24, 2010,

"Andrew Wakefield, the doctor who triggered anxiety among parents over his suggestion of a link between the MMR vaccine and autism, was struck off the medical register today for offences relating to dishonesty and failing to act in the best interests of vulnerable child patients." 

 

Backstory:  Jeremy Laurance writing at The Independant, looking back at February 1998: I Was There When Wakefield Dropped His Bombshell

"The Royal Free took a different tack. It decided to deal with the inevitable press interest head on. It called a press conference before a panel of five doctors, led by Professor Arie Zuckerman (a virologist and dean of the medical school, but not an author of the paper), who were carefully selected to present a balanced view. All were eminent in their own fields but, fatally, each had a different opinion.

The five had rehearsed the press conference in advance and agreed the line they would take, which was to recommend continued use of the MMR vaccine pending further research. Under questioning, however, this carefully constructed consensus fell apart."

 

On April 19, 2008, Owen Dyer published "Wakefield admits fabricating events when he took children’s blood samples" in the British Medical Journal (BMJ)

The doctor whose study triggered a collapse in public confidence in the combined measles, mumps, and rubella (MMR) vaccine told a disciplinary panel last week that he made up details of his son’s birthday party—at which he took blood samples from several children—when giving a speech in California....

The GMC’s charges against Dr Wakefield include allegations that, in 1998 while a consultant at the Royal Free Hospital, London, he unethically paid children at his son’s 10th birthday party £5 (€6; $10) each to give blood samples he wanted for his research.

Last week the GMC panel saw video footage of a speech Dr Wakefield gave in 1999 at a meeting of parents of autistic children called by the Mind Institute of the University of California, Davis, where he jokingly described children fainting and vomiting after giving blood.

“Two children fainted, one threw up over his mother,” he told his laughing audience in the clip. “People said to me, you can’t do that—children won’t come back to your birthday parties. I said we live in a market economy; next year they’ll want £10.”

But Dr Wakefield told the GMC panel that he had made up these details to amuse his listeners. “It was the end of a long and rather exacting talk for the parents, and it was an attempt to introduce a little bit of levity,” he said. “It was a quip, just a story. The way these stories are told, if the audience responds you tend to respond back. So the story was told. But it had no bearing on the truth at all.”

ON January 11, 2011, Brian Deer began publication of a many-part series on the extent of Wakefield's iniquities, with   Piltdown medicine: the missing link between MMR and autism in the British Medical Journal.

At first, the comparison may feel disconcerting. The Piltdown scandal lay in fossils, while the MMR scare rested on the status of young children. But the parallels are striking. The modus operandi was essentially the same: the dishonest representation of pre-assembled artifacts. The dramatis personae, meanwhile, were similar in their conduct: they contrived, or they were duped, or they failed to act.

This week, the BMJ begins a series which lays bare the MMR scandal in detail never published before. Drawing on interviews, documents, and properly obtained data, collected during seven years of inquiries, we show how one man, former gastroenterology researcher Andrew Wakefield, was able to manufacture the appearance of a purported medical syndrome, whilst not only in receipt of large sums of money, but also scheming businesses that promised him more. His was a fraud, moreover, of more than academic vanity. It unleashed fear, parental guilt, costly government intervention, and outbreaks of infectious disease.

Notwithstanding Brian Deer's devastating series, after Wakefield was struck off, a wave of support gathered for him on both sides of the Atlantic, using various lies to cover up his many misdeeds. In 2012, Matt Carey published "Andrew Wakefield’s many statements that MMR causes autism" at the blog LeftBrain/RightBrain Autism.

The problem for Mr. Wakefield’s supporters is that Mr. Wakefield did not limit his discussion to the Lancet. As already noted, he held a press conference to announce his results and has made many more statements over the years. More to the point, Mr. Wakefield *did* say that the MMR causes autism.

Here is a collection of Mr. Wakefield’s statements which range from suggesting a possibility that the MMR causes autism to outright claiming that he “has shown” that the use of the MMR vaccine causes autism.

Mr. Wakefield’s patent application states clearly and unequivocally that the MMR vaccines has “been shown” to cause “pervasive developmental disorder”

In 2012, I wrote a post here on the outcome of a hearing for one of Wakefield's colleagues, "What the UK High Court's Ruling on John Walker-Smith Means and Doesn't Mean", which I post part of as follows:

On March 3, 2012, Mr. Justice Mitting of the UK's High Court of Justice ruled that the UK's General Medical Council (GMC) had acted improperly in Professor John Walker-Smith's hearing on charges of serious professional conduct, and therefore he quashed both the finding of serious professional misconduct and the sanction of erasure. (You can find the entire ruling at http://www.bailii.org/ew/cases/EWHC/Admin/2012/503.html.)

It's important to be very clear about what this ruling means. Mr. Justice Mitting did not find that Professor Walker-Smith's actions were medically necessary or ethical. The ruling does not exonerate Walker-Smith. That was not what the hearing was about. Mitting was only ruling on the conduct, the decision-making, of the GMC's Fitness to Practice panel. More broadly, Mitting found aspects of the GMC's procedures to be flawed.

And Mitting's ruling has nothing to do with the retraction of the 1998 paper. It's still retracted. It does not validate Andrew Wakefield's integrity, or affect the likely outcome of Andrew Wakefield's defamation suit in Texas, (see below).

Mr. Justice Mittings wrote in his opinion:

"There is now no respectable body of opinion which supports [Wakefield's] hypothesis, that MMR vaccine and autism/enterocolitis are causally linked."

Many more details of Wakefield's fraud and perfidy came out after the GMC hearing. I wonder if Mr. Justice Mitting silently took that into account in his ruling -- that Walker-Smith was not a party to Wakefield's unscrupulous doings and in effect, was betrayed by Wakefield.

Nevertheless, Wakefield enthusiasts and fans continue to insist that the Mitting ruling "exonerated" Wakefield. Here are two more looks at the matter.

Legal scholar Dorit Rubenstein Reiss, at Skeptical Raptor:

"Does Walker-Smith’s decision exonerate Andrew Wakefield? The decision, if read generously, can cast doubt on one set of findings against Wakefield–that he subjected some of the children to invasive tests that were not clinically indicated. It leaves untouched, however, the rest of the charges found proved against Wakefield, and in fact, reinforces several of the allegations–for example,that Wakefield conducted research without ethics committee approval, that Wakefield included misrepresentations in the paper, and that Wakefield did not disclose conflicts of interests. It’s anything but an exoneration, and the charges against Wakefield, as the GMC concluded, amount to serious ethical violations."

 Joel Harrison for Every Child by Two: Expert Commentary Series Andrew Wakefield Has Never Been “Exonerated”: Why Justice Mitting’s Decision in the Professor John Walker-Smith Case Does Not Apply to Wakefield by Joel A. Harrison, PhD, MPH August 1, 2016

This paper will show that Justice Mitting’s decision in no way exonerated Wakefield, that even with regard to John Walker-Smith, the decision was based on a procedural error, not factual innocence. In addition, despite what antivaccinationists have written, Justice Mitting’s decision also made clear that he considered the research showing no relationship between the MMR vaccine and autism to be established science. 

In February of 2018, Julia Belloz reviewed the evidence against Wakefield in "20 years ago, research fraud catalyzed the anti-vaccination movement. Let’s not repeat history", published at Vox on the 20th anniversary of the publication of the infamous, retracted paper.

What’s more, when a British investigative journalist Brian Deer followed up with the families of each of the 12 kids in the study, he found, “No case was free of misreporting or alteration.” In other words, Wakefield, the lead author of the original report, manipulated his data. (See the pop-up chart in this report for details.)

Wakefield also had major financial conflicts of interest. Among them, while he was discrediting the combination MMR vaccine and suggesting parents should give their children single shots over a longer period of time, he was conveniently filing patents for single-disease vaccines. Even more absurdly, the General Medical Council (the UK’s medical regulator) found that he had paid children at his son’s 10th birthday party to donate their blood for his research. (In deciding to take away his UK medical license, the GMC said Wakefield acted with “callous disregard for the distress and pain the children might suffer.”)

In the spring of 2017, there was an outbreak of measles in Minnesota, largely (95%) in the Somali community. In previous years, Wakefield had traveled to Minnesota and spread the myth to  the Somali community there about the MMR-autism connection. " U.S.-born children of Somali descent (Somali children) accounted for 55 (85%) of the cases. "

On February 28, 2018, Jonathan D. Quick MD, MPH, and Heidi Larson published The Vaccine-Autism Myth Started 20 Years Ago. Here's Why It Still Endures Today in Time Magazine.

"Stunningly, the vaccine-autism myth still persists. It was amplified by the British media during its early years, later by celebrity endorsement and more recently by worldwide social media. Wakefield has continued his own relentless personal campaigning, moving well beyond the initial MMR vaccine scaremongering to attacking the CDC in his controversial film Vaxxed. The film was pulled before screening at the Tribeca Film Festival but found its way into independent theaters in the U.S. and Europe. Europe’s four-fold increase in measles cases and 35 measles-related deaths in 2017 — due largely to people not getting vaccinated — also reflects how Wakefield’s vaccine-autism scare can spark vaccine refusals that lead to debilitating and fatal cases of measles." 

Can we at last put the vaccine-autism myth behind us?

About Those "Homeschooled, Unvaccinated Children are Healthier" Studies.

(do go read the whole thing)

The tl;dr version (referring to the first paper. The second paper is a "minimally publishable unit" from the same analysis). 

...when you look at how this study was designed, it was set up in a biased way that almost guaranteed that it would find “evidence” that vaccines are dangerous. It would have been shocking if such a horribly designed study found anything else. This isn’t science, not even close. It is a junk study that very much deserved to be retracted.

I've been hearing about this "unvaccinated homeschooling students" study since 2010, when Matt Carey told us about Generation Rescue’s Vaccinated/Unvaccinated Study.  At that time, Generation Rescue was fundraising for the study; the researchers were then named as:

• Dr. A. Mawson, Professor of Pediatrics and Medicine at University of Mississippi Medical Center (UMMC), and Principal Investigator of the Mississippi Study Center for the National Children’s Study.
• Dr. B. Ray, President of the National Home Education Research Institute and an experienced researcher in home education.
• Dr. S. Buttross, Professor and Chief of the Division of Child Developmental Disorders in the Department of Pediatrics; UMMC;
• Dr. W. May,Professor of Biostatistics, Department of Medicine, UMMC. The combined experience of these investigators ensures the highest standards of quality and scientific rigor.

Fast forward to the spring  of 2017: there are in fact two studies, both published at the pay-to-play Journal of Translational Science -- after some drama, described below. 

1. Mawson AR, Ray BD, Bhuiyan AR, Jacob B, Pilot comparative study on the health of vaccinated and unvaccinated 6- to 12- year old U.S. children J Transl Sci 3: DOI: 10.15761/JTS.100018
2. Mawson AR, Bhuiyan AR, Jacob B,Ray BD,Preterm birth, vaccination and neurodevelopmental disorders: a cross-sectional study of 6- to 12-year-old vaccinated and unvaccinated children J Transl Sci 3: DOI: 10.15761/JTS.1000187

Let's look at the research team, compared to the team announced in 2010.

1. Anthony R Mawson, Visiting Professor, Department of Epidemiology and Biostatistics, School of Public Health, Jackson State University (JSU),  Mississippi.
2. Brian D Ray President, National Home Education Research Institute
3. Azad R Bhuiyan Associate Professor, Department of Epidemiology and Biostatistics, School of Public Health, Jackson State University
4. Binu Jacob Former graduate student, Department of Epidemiology and Biostatistics School of Public Health, Jackson State University, 

From Dr. Mawson's CV, it appears his appointment to the University of Mississippi Medical Center terminated in November, 2010. He was not happy with his departure from UMMC --details here. His next appointment, to JSU, began in August 2011.

Publication History

The first paper was accepted for publication at Frontiers in Public Health on November 21 2016, and then retracted, or unpublished, on November 28, 2016. Retraction Watch has the details.  By the way, the ill-informed Celeste McGovern, writing at CMSRI, blames Retraction Watch, for well, the retraction. 

At some point, Mawson shared the project on Research Gate.  Amusingly, one of the commenters was Graham Ewing of the speculative autism paper fame.

The publication history is, well, unusual and unusually complicated.  Here's the Retraction Watch timeline.

1. November 28,2016 Study linking vaccines to autism pulled following heavy criticism (the Frontiers delay in publication)
2. December 9, 2016 Journal reverses acceptance of study linking vaccines to autism (Frontiers rejects the paper)
3. May 8, 2016 Updated: Vaccine-autism study retracted — again, from the  Journal of Translational Science.  

Critical reviews of the paper(s) -- updated silently

1. November 29, 2016 Respectful Insolence Antivaccinationists promote a bogus internet “survey.” Hilarity ensues as it’s retracted. 
2. December 7, 2016, Bryson Masse at Vice Motherboard Jenny McCarthy’s Antivax Group Is Funding Scientific Research On Autism
3. May 6, 2017, Vaccines Work Blog, Why This Vaxxed v. Unvaxxed Study Is Not Valid 
4. May 7 2017 Skeptical Raptor Vaccinated children sicker – another anti-vaccine trope
5. May 8, 2017  Respectful Insolence A horrendously bad “vaxed/unvaxed” study rises from the dead yet again
   
6. May 8, 2017,Dani Stringer, MSN, CPNP, PHMS at Kid Nurse The Truth about Vaccinated vs. Unvaccinated Homeschoolers
7. May 8, 2017  Steve Neurologica Blog Vaccinated vs Unvaccinated Survey
8. May 9,2017 Skeptical Raptor Anti-vaccine paper retracted again – like a zombie, it keeps coming back
9. May 10, 2017 Chad Hayes MD at Chad Hayes MD A Tale of One “Study”: Vaccine science done wrong.
10. May 10, 2017 Respectful Insolence The Mawson “vaxed/unvaxed” study retraction: The antivaccine movement reacts with tears of unfathomable sadness
11. May 10, 2017 Logic of Science Another terrible anti-vaccine study bites the dust
12. May 11, 2017, David Gorski at Science Based Medicine Two (now retracted) studies purporting to show that vaccinated children are sicker than unvaccinated children show nothing of the sort
13. May 14 2017 Skeptical Raptor Sayer Ji pushes retracted anti-vaccine articles – cause he’s got nothing
14. May 18, 2017 Respectful Insolence The check must have finally cleared, or: Mawson’s incompetent “vaxed/unvaxed” study is back online

Approving reviews of the paper(s)

1. December 2, 2017, Dr. Eowin at Fellowship of the Minds New study finds link between child vaccination and autism – CENSORED
2. February 23, 2017 Mark Blaxill at Age of Autism Stunner in First-ever “vax/unvax” Study: Vaxxed Kids Have 4.7 Fold Higher Risk of Autism
3. March 9 2017 James O. Grundvig at Healthcare in America Censored Study of Vaccinated vs. Unvaccinated sees Daylight
4. March 8, 2017 Vicki Batts  at Natural News VACCINE STUDY: Peer-Reviewed Study Shows Vaccinated Children Have A 700% Higher Chance Of Neurodevelopmental Disorder
5. May 4 2017 Mark Blaxill at Age of Autism Pilot Comparative Study on the Health of Vaccinated and Unvaccinated 6-12 Year Old US Children
6. May 4 2017 Celeste Mcgovern  at CMSRI: Vaccinated vs. Unvaccinated: Guess who is Sicker? (note: CMSRI  partially funded both studies)
7. May 5, 2017 Claire Dworkin at CMSRI: First of Its Kind Survey Shows Vaccinated Children Get Sicker (note: CMSRI  partially funded both studies)
8. May 8, 2017 Jacqueline at Deep Roots at Home Vaccinated Vs. Unvaccinated Homeschooled Kids: Can You Guess Who Is Healthier?
9. May 8, 2017 Jeffery Jaxen at Green Med Info Vaccinated Vs. Unvaccinated Pilot Study: Early Vaccination Sees Exponential Increase in Chronic Disorders
10. May 14, 2017 Claire Bernish at the Free Thought Project First Ever Study of Unvaccinated Vs. Vaccinated Kids, Pulled from Journal, Erased from Internet
11. May 17, 2017 Robert F. Kennedy, Jr. at the World Mercury Project Unvaccinated Children Have Much Lower Rates of Chronic Illness, Jackson State Study Finds

 

<

Claire Dwoskin and the Children's Medical Safety Research Institute (CMSRI)

The Children's Medical Safety Research Institute (CMSRI) is an anti-vaccine organization that also demonizes autism.  

Claire Dwoskin and her husband Albert J. Dwoskin founded CMSRI,  and lead its board of directors. Prior to founding CMSRI, Mrs. Dwoskin served on the board of the National Vaccine Information Center (NVIC), another anti=vaccine organization. She continued to serve on its board through 2015 (the last year reported).

 CMSRI was founded in 2013, in two parts: the organization itself, and the Childrens' Medical Safety Research Institute Endowment Fund (founded 2014). The latter exists to "Hold and manage the Children's Medical Safety Research Institute's endowment and make research grants from the endowment. Also, the endowment will serve as a long-term financial reserve for the institute by way of providing funds to the institute."

The Dwoskins explained the decision to found CMSRI this way:

As a private foundation, the Dwoskin Family Foundation was limited to how it could raise and use donated funds. Laws governing tax-exempt organizations made it difficult to dedicate 100% of all donations to philanthropic causes. In many situations, especially when dealing with international research organizations, donations were heavily taxed. This lessened the amount of foundation-funded research and prolonged the arrival of important evidence and potential solutions.

Evidence of anti-vaccine philosophy:

On October 29, 2010, John Stossel aired a segment on his daughter's struggle with pertussis (whooping cough), which Mrs. Dwoskin took issue with:

I just saw the show and am so sorry to hear that other than what Chris had to say, not a word of truth was spoken by Stossel or Offitt. What a travesty – I hope someday he will recognize the error of his ways and realize the fear and damage that he is contributing to by allowing falsehoods to rule the air. At least his daughter is alive, smiling, educated and enjoying life. That cannot be said for the hundreds of thousands of vaccine injured children in the US. What his daughter went through is NOTHING compared to what the families of autistic children go through every day of their lives. No disease can match this record of human devastation. Vaccines are a holocaust of poison on our children’s brains and immune systems. Shame on you all.

In  January 2011, The Dwoskin Family Foundation put on a "Vaccine Safety Conference" at a luxury resort in Jamaica. Matt Carey had this thought:

Next time I hear or read about Big Pharma buying off doctors with exotic junkets I’ll be thinking of Andrew Wakefield, talking via Skype from the Tryall Club in Jamaica.

In August, 2013, the blog Harpocrates Speaks published A Snapshot of the Deep Pockets of the Anti-Vaccine Movement:

If a study is funded by Merck, I will take its results with a bit of a grain of salt, especially if the results favor a Merck product. Likewise, if a study is funded by the Dwoskin Family Foundation, the Katlyn Fox Foundation or a similar group (e..g, NVIC), and the results favor the anti-vaccine stance, I won't just accept the results at face value. Knowing the motivations of the funding organization can serve as a signal to look for potential bias in the results. When a researcher appears to rely on funding from an organization or group with a very clear mission, they might design their study in such a way that they will find whatever results are favorable to their patron. The stronger the funder's convictions, the more likely it becomes a potential source of bias. It's not a sure thing, and it certainly is not a black-or-white metric, but it is a factor to consider and understand.

 

In February, 2015, CNN Money had a short video on The Money Behind the Vaccine Skeptics.

 

Matt Carey took a screenshot and fleshed out a bit more background:

I’ve never seen evidence of these groups actually funding work into safer vaccines. I’ve never seen, say, funding for research into a new vaccine or even something simple like improved storage and transportation for vaccines into the developing world to reduce the use of thimerosal, a preservative these groups claim (without good evidence) cause autism and other disabilities.

Recently,Vaxopedia published an explainer: What is the Children’s Medical Safety Research Institute?

Evidence of  contempt for autistics:

March 2017: In Brain-Damaged Kids: Sesame Street’s Happy New Normal, The Childrens' Medical Safety Research Institute published this cruel and degrading article on autism:

I’m guessing little Muppet Julia won’t be smearing feces on Sesame Street’s walls then? Or banging her head on the floor like some autistic kids do. Or crying in agony from gut pain – bowel disorders are one of the many “comorbid” conditions of autism. Will she have regular epileptic seizures – they affect one in four autistic children, you know? Does the Muppet develop an autoimmune disease that goes along with autism and is now a leading cause of mortality in girls and young women. Is there going to be a “Self-Injuring Julia” on the market beside “Tickle-Me-Elmo”?

 

Are there 131 Papers That Support Vaccine/Autism Causation? papers 91-131 Evaluated

Logic of Science's evidence pyramid is one of the clearest I've found, so I'm sharing it here.

This is the Nth iteration of a "list of papers supporting the vaccine-autism link" that Taylor has published. I've lost count of the iterations. I first debunked Taylor's list back in August 2013, when she only had 76 papers on the list. 

I used this numbering system "131 papers number: X. 124 papers number: Y. 72 papers number: Z", because Ms. Taylor likes to shuffle the order of the papers from iteration to iteration. It helps me keep clear which papers are new and which are just in a different order.

• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 1-30 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 31-60 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? papers 61-90 Evaluated
Are there 131 Papers That Support Vaccine/Autism Causation? papers 91-131 Evaluated

If you would prefer to download a Word document with links, here it is:  Download Are there 131 Papers That Support Vaccine

131 papers number: 91.  124  papers number: 84. 72 papers number: 0 Stajich GV, Lopez GP, Harry SW, Sexson WR. Iatrogenic exposure to mercury after hepatitis B vaccination in preterm infants. J Pediatr. 2000 May;136(5):679-81. Small, 20-subject study, with no follow-up of subjects.  Thimerosal is no longer used in US pediatric vaccines and has been exonerated of causality in autism (see Hurley 2010, Price 2010, Yoshimasu 2014,   Taylor 2014). Does not establish that vaccines are causal in autism.

 

Are there 131 Papers That Support Vaccine/Autism Causation? papers 61-90

Logic of Science's evidence pyramid is one of the clearest I've found, so I'm sharing it here.

This is the Nth iteration of a "list of papers supporting the vaccine-autism link" that Taylor has published. I've lost count of the iterations. I first debunked Ginger Taylor's list back in August 2013, when she only had 76 papers on the list. 

I used this numbering system "131 papers number: X. 124 papers number: Y. 72 papers number: Z", because Ms. Taylor likes to shuffle the order of the papers from iteration to iteration. It helps me keep clear which papers are new and which are just in a different order.

• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 1-30 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 31-60 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? papers 61-90 Evaluated
• Are there 131 Papers That Support Vaccine/Autism Causation? papers 91-131 Evaluated

If you would prefer to download a Word document with links, here it is:  Download Are there 131 Papers That Support Vaccine

131 papers number: 61.  124  papers number: 55. 72 papers number: 25 Petrik MS, Wong MC, Tabata RC, Garry RF, Shaw CA. Aluminum adjuvant linked to Gulf War illness induces motor neuron death in mice. Neuromolecular Med. 2007;9(1):83-100. Mouse model, not a human study. A very small and weak study which has never been replicated. Nothing to do with autism. Does not establish that vaccines are causal in autism

 

Are there 131 Papers That Support Vaccine/Autism Causation? Papers 1-30 Evaluated.

In a Scribd document called "130 Research papers supporting Vaccine/Autism Causation", Ginger Taylor makes the following claim: 

Mainstream research has found that vaccines and their ingredients can cause the underlying medical conditions that committed physicians and researchers are commonly finding in children who have been given an autism diagnosis. These conditions include gastrointestinal damage, immune system impairment, chronic infections, mitochondrial disorders, autoimmune conditions, neurological regression, glial cell activation, brain inflammation, damage to the blood–brain barrier, seizures, synaptic dysfunction, dendritic cell dysfunction, mercury poisoning, aluminum toxicity, gene activation and alteration, glutathione depletion, impaired methylation, oxidative stress, impaired thioredoxin regulation, mineral deficiencies, impairment of the opioid system, endocrine dysfunction, cellular apoptosis, and other disorders.

We will ignore that few or none of the "medical conditions" Taylor lists are exclusive to autism, or are included in the diagnostic criteria for autism. This is the Nth iteration of a "list of papers supporting the vaccine-autism link" that Taylor has published. I've lost count of the iterations. I first debunked Taylor's list back in August 2013, when she only had 76 papers on the list. 

Ginger Taylor, the person who has been publishing these lists, has been a loud voice in the "vaccines do too cause autism" movement, and has been since 2004.  She has been known to make much of her "scientific background" as a marriage and family therapist but she actually was a paid political operative.  Nonetheless, this list keeps being cited, mostly by the scientifically naive, as "proof" that vaccines can be causal in autism, and latterly, that the CDC is covering something up.  

 By 2016 the list was up to 124 papers, and while I wrote about the list, two science bloggers did the heavy lifting of analyzing the papers.  The Logic of Science blog, written by a PhD candidate in biology, published Vaccines and autism: A thorough review of the evidence.  Then at Stories from the Trauma Bay,  a physician who is a trauma surgeon published 124 papers that DO NOT prove vaccines cause autism. 

Before we set off on looking at each of the papers, let me remind readers  (or tell readers for the first time) about some background.  The US has, as many countries do not, a National Vaccine Injury Compensation Program (NVICP). That is to say, the US recognizes that, very rarely, someone getting a vaccine might suffer an injury, from the vaccine itself or from the process of being vaccinated, and has set up a compensation program, funded by a surcharge on all vaccines. Starting in about 2001, parents began filing claims with NVICP that their children's autism had been caused by vaccines. Claims went from a few hundred a year to thousands.  In 2002,  NVICP, acting with a panel of parent-claimaints and their attorneys (the Petitioners Committee), agreed to hear test cases, selected by the petitioners, on their three theories on how vaccines could be causal in autism:

• Theory 1: a combination of MMR  and Thimerosal-Containing Vaccines could cause autism
• Theory 2: Thimerosal-Containing Vaccines alone could cause autism 
• Theory 3: MMR vaccines alone could cause autism. 

These collectively were known as the Omnibus Autism Proceeding. http://www.vaccinateyourbaby.org/safe/autism/omnibus_proceeding.cfmThe Petitioners Committee selected three test cases for each of the theories -- children whose cases they thought best made the case for their argument.  However,the Petitioners Committee agreed, in 2008, that the test cases and hearings on Theory 1 would suffice for Theory 3 as well. Both documents and hearings on the three theories were exhaustive. On February 12, 2009, NVICP found that Theory 1 was not supported by the weight of the evidence including expert testimony.  On On March 12, 2010,  NVICP found that Theory 2 was not supported by the weight of the evidence including expert testimony.  

Now, science isn't decided by legal rulings. However, these rulings were supported by science. The other thing about the NVICP is that the standard of evidence required in cases adjudicated there is much less than in other courts -- 50% plus a feather (the Althen standard).

Another ground-laying episode:  there are hierarchies of evidence: how strong a claim is.  Logic of Science's pyramid is one of the clearest I've found, so I'm sharing it here.

The image is of a pyramid.  Let me lay out the levels, from strongest to weakest:

• Level 1: meta-analyses and systematic reviews
• Level 2: Randomized controlled trials (RTCs)
• Level 3: Cohort studies
• Level 4: Case-control studies
• Level 5: Cross-sectional studies
• Level 6: Animal trials and in-vitro studies (the short version is that both animal studies -- studies using living animals such as mice and monkeys -- and in vitro -- studies using cells grown in containers (hence, in vitro, Latin for glass) -- do not generally translate robustly to humans.  The failure rate may be as hhigh as 97%.
• Level 7: Case reports, opinion papers, and letters

Studies specifically on the relationship between the vaccine ingredient thimerosal and autism:

• a cohort study with 446,695 children that compared those who received vaccines with thimerosal to those who received vaccines without thimerosal (Hviid et al. 2003).
• a cohort study with 124,170 children (Verstraeten et al. 2003)
• a case-controlled trial with over 1,000 children (Price et al. 2010)
• a meta-analysis with 1.2 million children (Taylor et al. 2014), 

These studies make a very strong case that thimerosal does not cause autism.  So do the studies that show that autism rates did not drop after thimerosal was removed from vaccines (Madsen et al. 2003; Schechter and Grether 2008).

 

On to the studies that Ms. Taylor claims "support the vaccine-autism link". ( This is going to be long. )

I used this numbering system "131 papers number: X. 124 papers number: Y. 72 papers number: Z", because Ms. Taylor likes to shuffle the order of the papers from iteration to iteration. It helps me keep clear which papers are new and which are just in a different order.

• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 1-30 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? Papers 31-60 Evaluated.
• Are there 131 Papers That Support Vaccine/Autism Causation? papers 61-90 Evaluated
• Are there 131 Papers That Support Vaccine/Autism Causation? papers 91-131 Evaluated

If you would prefer to download a Word document with links, here it is:  Download Are there 131 Papers That Support Vaccine

131 papers number: 1.  124  papers number: 1. 72 papers number: 0  Verstraeten TM, Davies R, Gu D, DeStefano F. Increased risk of developmental neurologic impairment after high exposure to thimerosal-containing vaccine in first month of life. Division of Epidemiology and Surveillance, Vaccine Safety and Development Branch, National Immunization Program, Centers for Disease Control and Prevention. 1999.  This is Phase I of a planned 2-phase study.  This first phase was presented at the 2000 Simpsonwood conference, and problems and shortcomings in the data were throughly discussed at that conference, leading the Verstraeten team to look more closely at the data.   The second phase of the was published in 2003, Safety of thimerosal-containing vaccines: a two-phased study of computerized health maintenance organization databases.  It is at the least misleading to list only the first phase.  The true story of Simpsonwood and the evolution of the Verstraeten papers is covered in depth in Paul Offit's Autism's False Prophets,  Emily Willingham reviews the facts in a Forbes article, Is The CDC Hiding Data About Mercury, Vaccines, And Autism? and a longer, more detailed blog post byLindsay Beyerstein Simpsonwood, thimerosal, and vaccines (II)l Thimerosal is no longer used in US pediatric vaccines and has been exonerated of causality in autism (see Hurley 2010, Price 2010, Yoshimasu 2014,   Taylor 2014). Does not establish that vaccines are causal in autism.

 

In 2017, Autism Awareness Is So Outdated: Demand Autism Acceptance Now

One of the ways I contributed to the blogosphere, back in the day, was to provide lists of posts on a particular subject.  Nowadays, that is called "curation".  Back then, it was just something that provided a service. 

"Light it up blue" for "autism awareness" offends many autistics and people who center autistics in discussions of autism.

Back in 2010, autistic folk who were exasperated with being talked over and talked about started Autistics Speaking Day

In 2010, Autistics Speaking Day was started by Corina Becker and Kathryn Bjørnstad. Autistics Speaking Day countered an event that requested Facebook users to "shut down" communication to "show what it's like to be autistic." They led autistic bloggers to raise their voices and say that the best way to understand what it’s like to be autistic is to listen to autistic people. Bjornstad and Becker received ASAN's 1st Annual Award for Exceptional Services to the Autistic Community at ASAN's fifth anniversary gala event the following year.

Here is the 2010 list of participants and their thoughts for Autistics Speaking Day (every November 1st). The project continues; here is the 2016 archive. 

In 2011, Paula C. Durbin-Westby became exasperated with the "Autism Awareness Day" noise, primarily from parents, and started Autism Acceptance Day, originally as a Facebook event, and later as a blog. 

On April 2, 2012, Steve Silberman posted: Why “Autism Awareness” is Not Enough: Actually Autistic People and their Allies Explain “Autism Acceptance”

But by 2013, it became clear to many, including Ms. Durbin-Westby, that a day for autism acceptance simply was short-sighted Even Autism Acceptance Month didn't go far enough. And so the International Autism Acceptance Decade (2010-2020) was born.

So here we are, 7/10ths of the way through the Autism Acceptance Decade.  Ms. Durbin-Westby is again celebrating  Autism Acceptance Day/Month/Year/Decade with many interviews -- starting with   Jean Williams. The second interview is with Penni Winter. You might want to bookmark the International Autism Acceptance Decade blog to keep up with the newly published interviews.

Sonia Boue at her blog The other side | Blogging on autism and art, published The sound of stigma: a journey across the rope bridge. #AutismAcceptance

Blogging about autism sometimes feels like being suspended above a battleground on a rope bridge. The warring factions are often parents of autistic children and autistic adults. Like many other late diagnosed autistics I know, I am both. Other parties such as charities and research bodies (those not autistic led) tend to fall into the same camp as many non- autistic parents. In general, thought on language about and priorities for autism are driven by the non- autistic majority. There is still genuine discomfort in accepting identity first language and allowing the primacy of autistic voices in on the contemporary debates about autism which (crucially) lead policy, resources and research.

Judy Endow is an autistic adult, parent to autistic children, an author, and a therapist in the field of autism. I highly recommend her work. One place to start is her blog, Judy Endow: Aspects of Autism, Translated. In Toxic Autism Awareness: Fact from Fiction?, she wrote:

Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”

Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?

(Note: Ms. Endow's essay was originally published at OllieBean, another excellent site. Olliebean's mission statement:

Ollibean is a dynamic community of parents, families and advocates in the disability community working together for a more socially just, accessible and inclusive world.

Love. Acceptance.

We humans thrive in loving and accepting environments connected to people that believe in us.

Equal Opportunities.

High expectations, safe and welcoming environments, robust and accessible academics, and meaningful social opportunities are every human’s right.

It’s time.

The essayist and poet who writes at So Much Stranger, So Much Darker, So Much Madder, So Much Better has published a number of Autism Acceptance posts, such this poem (I have only inclded the first stanza, please go read the full poem):   

A CALL FOR ACCEPTANCE
There is beauty in the ways we move
Every flapping hand and tapping leg
Every spinning, rocking, bouncing body
A symphony of stims
Producing an ethereal melody
The flowing motions of bodies always moving

I also highly recommend the posts Why Not to Support Autism Speaks and What's Wrong with Autism Speaks

Thomas, an #actuallyautistic adult who lives in the United Kingdom, writes the blog Aspiblog. He published two posts: World Autism Awareness Day and Too Much Information and Autism Acceptance (His blog also features gorgeous photographs, so do take a look around.) In the latter post, Thomas writes:

Autism Acceptance Month is a better title than the old title for this month. Some however, and I fully sympathise with their reasoning, consider that even this is inadequate, and have introduced another title, Autism Appreciation Month. This appeals greatly to me, as an extension of the principle by which the title Autism Acceptance Month was arrived at.

Eclectic Autistic is a blog written by an adult who was diagnosed with autism in the last year.The blog post on Autism Acceptance makes the case for going further.

So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.

Aspie Under Your Radar is written by another diagnosed-in-adulthood autistic. Here is the first of her essays on Autism Acceptance: Okay, so it’s April… let the awareness onslaught begin

It’s April! I need to take care of myself, for sure. The whole turn-on-blue-light-bulbs thing is, well, a popular thing. It means different things to different people, and to autistic people, it doesn’t always mean something good.

At work, we’re encouraged to wear blue on certain days to “show support” for autistic people and their families. Because, well, they’re all apparently young boys who make their parents feel “blue”, and we want to be supportive of the poor suffering families. Bummer. I have to figure out which days those are, because I don’t want to wear blue on those days. I’ll wear #RedInstead. But blue clothes are a significant portion of my very limited work wardrobe

Michelle Sutton is an autistic adult and parent. Her article for April is blue lights won't help me

So, while the world is busy getting “aware” and raising money for non- autistic run charities to try to figure out ways to cure me of being myself, I will be over here, engaging in my favourite repetitive self soothing activities, indulging in my special interests, eating my predictable restricted diet, and fixating on topics I am obsessed with. Stimming, self-caring, learning, advocating. In other words, I am going to spend April the way I spend every other month- being happily, proudly autistic and fighting for equal rights for all of us…..

…. and blue lights wont help me with any of that.

The Misadventures of Mama Pineapple is a blog by an adult-diagnosed British woman who wrote

I have to confess, I’m feeling pretty raw about this particular month. Stressful time at work, minimal downtime, the comparative recentness of my own diagnosis…whatever it is, I’m finding it far less easy than I’d anticipated to be the activist I wanted to be at this time.

The Silent Wave is a blog written by a female physician on the autism spectrum. In Autism Didn't Steal Me, she wrote:

To me, I’m not missing any pieces. I’m not even a puzzle to be solved. To me, it’s the world that is confusing. They seem to be missing a few pieces. Like the fact that we’re whole, valid, complete human beings, just as we are. That maybe, nature knew what it was doing when it formed us. That maybe, the great mystery is why we’re here. And maybe, how we could improve the world and the quality of life for all of its inhabitants. That perhaps, we “actually belong here, having been put here for a reason. But the world is missing our voices. Or rather, it’s turning a “blind eye” to them. All while droning on about missing pieces.

In #RedInstead ~ Autism Acceptance / Appreciation Month, The Silent Wave wrote:

Someday, as I google “Red Instead”, the search returns won’t be led by links to technology companies or (seriously?) feminine napkin parodies (don’t ask; I didn’t click. Just Say No, and all that).

Someday, when we google “red instead”, links to blogs and truly-Asperger’s/autism-friendly advocacy organizations will dominate the cyber-search landscape.

It will be then that we’ve truly arrived.

Rachel Lucas, an author and parent of an autistic child, wrote Imagine (a post for #worldautismawarenessday)

I wrote the above when I first received my diagnosis of autism. Three years on, I’ve written the book I wished I’d had as a teenager – one where I might recognise myself. I wrote it for anyone who ever felt like the world didn’t quite make sense.

Aria Sky (a pseudonym) is a late-diagnosed Autistic mother, blogging at Mamautistic. For Autism Acceptance month, she published "(Mis)Understanding and Responsibility

Learning that I was Autistic was a daunting, overwhelming thing.

On the one hand, it explained everything. Learning that I’m Autistic has been one of the best things that has ever happened to me.

But, on the other hand, it’s overwhelming and discouraging to think about how allistics (non-Autistics) will likely never understand and will only rarely attempt to understand me.

The woman who blogs at Anonymously Autistic wrote Autism Acceptance Wish List

This year for Autism Acceptance Day I have five wishes. Some day they may come true – then my work blogging will be complete.

At Seriously Not Boring, Jennifer Roberts Bittner shared Autism and Acceptance as Explained by an Autistic 10 year old:

My 10-year-old son decided to create a short video describing his experience as an autistic person. After all, who better to explain autism than someone who is actually autistic? The video is a simple, honest, and even funny description that is less than two minutes and was created using the program Scratch. Yes, he did all the writing, drawing, and coding by himself.

At Eluding Atrophy, Jóhanna Katrín writes in Autism Acceptance: Listen to Autistic People

Lately I have been getting rather irritated by certain things in the “Autism” community. I put quotations around the word Autism because I am not referring to actually autistic people, I am referring to those who claim to speak for us. The doctors and researchers and groups and therapists and other so called professionals that claim to work with autistic people. The idea that they work with us is actually quite laughable, because to me it seems they are working against us in so many ways. And then there are the “autism parents” who are not autistic but use the condition -that is not their own- as their identity somehow while simultaneously yelling at us to stop calling ourselves autistic because we are not our diagnosis. They push person first language and say we are people and yet treat us like we are less than by speaking over us and ignoring/dismissing us when we do try to speak. They push person first language regardless of the fact that the majority of autistic people prefer identity first. And lest we forget, they also use the dismissal tactic of “there are more important things going on than language”. I love that one. It’s like they don’t know us at all and yet claim to be experts.

Ben Edwards writes the blog The Autist Dharma. He wrote Autism Acceptance Month 2017

Now, I have heard, on awareness versus acceptance, that awareness is necessary for acceptance. I am indeed for awareness (as in understanding autistic behaviors roles in processing and resulting from environmental factors), but let me put it this way. Imagine you are buying a bookshelve to assemble from IKEA (I know, I'm sorry) and awareness is the screws, while acceptance is the wood. You would not keep ordering tons and tons of screws and no wood hoping it could create a full shelf. Acceptance implies awareness. We have enough awareness, but awareness is not enough.

Writing at This Outnumbered Mama, Kaylene posts 5 Shocking Reasons NOT to Light it Up Blue for Autism Day

We are just days away from Autism Awareness Month, and I should be ecstatic. I am supposed to be very excited that for one month the whole world turns its sights towards inspirational stories of inclusion and feels good because they “light it up blue” for awareness on April 2nd each year.

But can I just say, please don’t. As the mother of an autistic son, and an autistic person myself, I cannot express to you enough how frustrating it is when I see everything blue on April 2nd each year. Honestly, I do my best to stay off of social media that day, and my poor husband hears me rant at least 3 times throughout the day. Listen, I get it. It feels nice to do things that we can consider activism without really thinking about the impact, or lack of impact, that it may have. So this April, check out these 5 shocking reasons NOT to light it up blue for Autism Day.

At Inquisitr, Holly Chavez reports on 'Light it up blue? Autistic Adults Suggest Red Instead.

There are two main sections of the autism community: those who are autistic and their parents, friends, and other allies. Within these groups, there are disagreements about the usage of identity-first or person-first language. The Autistic Self Advocacy Network recommends identity-first language. For example, saying someone “is autistic” instead of that they “have autism.”

The same type of debate has been continuously ongoing about Autism Speaks for several years. A commonly used phrase by autistic advocates is “nothing about us without us,” and this is at the crux of most of the boycott activity. Until recently, Autism Speaks had only ever had one autistic person on their board. DisabilityScoop reported in 2013 that this board member, John Elder Robison, resigned because of the negative language that Autism Speaks was using in their fundraising advertisements.

Back in 2016 David Niemeijer, founder & CEO of AssistiveWare posted Autism Acceptance Month: Listening to autistic voices. It's been reposted for this year (as it is still apropos)

We want to help you find out more about the world of autism from the perspective of autistic people. To celebrate autism acceptance month, we have invited some autistic people to write a blog post for us to share their experiences. We will also be sharing a number of blogs written by autistic bloggers. We hope that you will learn as much from reading these perspectives as we do.

Also last year, but (I believe) republished for 2017, autistic adult Kit Albrecht (a member of the AssistiveWare Support Team), published 5 Guidelines to keep in mind during Autism Acceptance Month

For some of us, the words, symbols and campaigns we see during this time remind us about the common myths people believe and mistakes people make when writing about autistic people. Here are five guidelines to consider.

At the Thinking Person's Guide to Autism, there is a list of ways to effectively advance autism acceptance: Autism Acceptance Day & Month: Do This, Not That

We'll be devoting our April to autism reporting and resource sharing that makes a difference, so do check back in. And thank you for supporting Autism Acceptance.

At Forbes, autism parent, scientist, and science journalist Emily Willingham wrote No Foolin': Forget About Autism Awareness And Lighting Up Blue

Conquering that step means taking autistic people as they are, learning from them, and listening to them. That takes work. It takes more than pulling something blue to wear out of your closet or buying blue lightbulbs at Home Depot and feeling better about yourself. More than dropping a quarter into a Toys R Us coffee can. More than clickphilanthropy or adding a profile ribbon. If you really care or want to make yourself genuinely care, you'll do this work. Here's why:

Shannon Rosa, whose autistic son falls into high-support-needs category, has something to say about reading parents writing about their children's autism, in On World Autism Acceptance Day: How to Find Good Writing By Parents:

Unfortunately, when it comes to WAAD writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well?....

I'll end by imploring reasonable, supportive readers like you to call out harmful parent writing when you can, on social media or in the comments. I realize that calling out is confrontational and therefore squirm-inducing; I don't like doing it either. Especially when folks who get called out dismiss criticism outright, or angrily frame reasonable critiques as personal attacks.

But the reason for calling out is not necessarily to get that person to change their behavior (though that would be great); it is to make them accountable for the hurtful things they publicly endorse, and let their readers know that writing awful, misleading, privacy-violating things about autistic children in public is not acceptable.

The blog, Learn From Autistics Connecting Parents and Caregivers with Autistic Voices, did not have a specifically #WAAD2017 post, but it has published a wealth of acceptance, advancing, and understanding posts.

And of course, no Autism Acceptance Month would be complete without the Facebook community Tone it Down Taupe.

Image source: Tone it Down Taupe photo album

I would be remiss if I did not mention several books that should be part of your autism acceptance library

• Typed Words, Loud Voices, "written by a coalition of writers who type to talk and believe it is neither logical nor fair that some people should be expected to prove themselves every time they have something to say."
• Loud Hands: Autistic People, Speaking "a collection of essays written by and for Autistic people. "

The Trump Administration and Disability Issues: Watch the Staffing

Ari Ne'eman, the founder of the Autistic Self Advocacy Network (ASAN) s a policy wonk, specifically disability policy. He has a blog, , Sometimes a Lion, covering topics he finds interesting. 

The latest article is on the Trump administration and disabled individuals: Watch the Appointments. His point is that policy is actually made an executed far down the administrative ladder, and who is appointed is critical. Relative to Trump, 

A Trump Administration that believes that vaccines cause autism insults Autistic people and can do tremendous harm to public health. But at the end of the day, defending vaccine policy is not a core interest of disability rights advocates. There are others for that job, and compared to other areas Trump is engaged in, it is not even a top five concern. But once we take into account the “congealing of the fringe” that’s taken place in autism and developmental disability politics over the last decade, an anti-vaccine President is a much scarier prospect. After all, the people that have Trump’s ear on disability aren’t just anti-vaccine – they also hold views that promise to reverse decades of federal policy promoting inclusion and access to the community for people with disabilities.

I'm afraid what this Administration means is that we are all going to have to stup up to being policy wonks, to protect our rights and those of vulnerable individuals.