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In Their Own Words: Adults on the Autism Spectrum Speak About Bleach 'Treatment'

When Emily Willingham started seeing tweets about the use of Miracle Mineral Solution to “treat” autism, she almost couldn’t stand to read about it. Miracle Mineral Solution (MMS), when prepared according to instructions, is chlorine dioxide, a chemical used in treating wastewater and in bleaching wood pulp for paper. It is an industrial-strength bleach.

“I read the headlines and couldn’t stand to click,” said Dr. Willingham, who holds a Ph.D. in biology and is the science editor for The Thinking Person’s Guide to Autism. “I mean, the headlines say it all, and just reading them was painful. But finally, I read a thorough breakdown of the presentation at AutismOne that started this current brouhaha and the history of applying MMS–a.k.a. industrial-strength bleach solution — at Science-Based Medicine.

“There, I finally forced myself to watch the video of the AutismOne presentation, which was extremely difficult. As I was watching, I was also talking with Jennifer Byde Myers on my Facebook page. In what turned into a 45-comment exchange on Facebook, Jennifer suggested a Change.org petition, and we moved forward with that.”

Both Dr. Willingham and Ms. Myers have children on the spectrum and are among the co-founders of The Thinking Person’s Guide to Autism. Dr. Willingham self-identifies as a woman on the autism spectrum.

Both Dr. Willingham and Ms. Myers feel strongly that AutismOne shouldn’t be endorsing, even implicitly by allowing the presentation at the conference, a product that holds a strong FDA warning.

“We felt that the fact that AutismOne could allow a presentation like that, one that clearly shilled a dangerous, unproven intervention with false claims of ‘curing’ autism, required the attention of federal authorities, both in the US and Mexico,” said Dr. Willingham. “Kerri Rivera, who made the AutismOne presentation–introduced, I add, by a woman wearing a t-shirt that read, ‘MMS ROCKS!’–peddles MMS from where she lives in Mexico.”

When I wrote about Miracle Mineral Solution earlier this week, there was a huge amount of information to sift through. Every time I clicked on another website, I found something else odd: the fact that Jim Humble, creator of MMS, says that the product has been successfully tested on prisoners in Malawi (although the Malawi government denies knowledge of this); that Mr. Humble is also an archbishop in The Genesis 2 Church of Health and Healing; and that for a fee, you can attend a seminar to become either a minister in his church or the holder of the title of D.MMS. — “Doctor of Miracle Mineral Solution.” Those seminars are held in Mexico and Ecuador, probably because practicing medicine without a license is a felony in the United States.

Unless I’m writing a purely opinion piece about autism (such as my open letter to Jenny McCarthy), I strive to include the voices of adults and young people on the spectrum in my posts. I didn’t do that for my first post about MMS, and I see that as a major fail on my part.

I’m rectifying that today. Because many of the children being forced to ingest, bathe in, or receive enemas of MMS are nonverbal, and therefore cannot voice their opinions on this matter, it’s all the more important to hear the thoughts of those who can say what they think.

Below, in their own words, are the thoughts of six prominent, thoughtful, and eloquent adults who happen to have Autism Spectrum Disorders. Having the opportunity to speak with and correspond with these people has been, thus far, the highlight of my work here at Strollerderby. I’m pretty sure I embarrassed myself with my fangirl gushing on the phone with Pulitzer Prize winner Tim Page about his letter to the New York Times last February. (Yes, that’s exactly the kind of geek I am. I get fangirl over letters to the editor.)

And despite my neurotypical status (or “nypical” as John Elder Robison would say), I just may have flapped my hands a bit when Mr. Robison e-mailed me back.

Take a moment to scroll through and read the words of these individuals. If you are a parent of a child on the spectrum, take note of the fact that while they all advocate supporting children and adults with autism with tools to help them navigate the neurotypical world, not one of them wishes to be cured.

Click the arrow to the right of the photo to view the next slide.

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  • ‘There is a broad and powerful industry that profits from telling parents their children are broken.’ – Ari Ne’Eman 1 of 6
    'There is a broad and powerful industry that profits from telling parents their children are broken.' - Ari Ne'Eman
    "We're profoundly concerned about the use of abusive and pseudo-scientific 'treatments' like the one you mentioned. This is part of a long line of similarly dangerous products being marketed to families as autism cures, ranging from chelation, secretin, hyperbaric chambers, and even lupron - the drug used to chemical castrate sex offenders. I think the broader lesson to be drawn here is that there is a broad and powerful industry that profits from telling parents their children are broken and their only hope rests with finding a cure. We need to start challenging that. That's a big part of ASAN's work," said Ari Ne'Eman.

    Mr. Ne'eman is the president and co-founder of the Autistic Self Advocacy Network, an advocacy organization run by and for autistic adults and youth. In 2009, he was appointed by President Obama to the National Council on Disability, making him the first autistic presidential appointee in American history. He also serves as a public member of the Inter-Agency Autism Coordinating Committee within the Department of Health and Human Services.

    (Photo Credit: ASAN)
  • ‘This is child abuse.’ – Emily Willingham, Ph.D. 2 of 6
    'This is child abuse.' - Emily Willingham, Ph.D.
    "If I [knew anyone using MMS], I would take all necessary measures to alert the appropriate authorities. This is child abuse," said Emily Willingham, Ph.D.

    Dr. Willingham is a biologist and former biology professor/researcher, who now works full time as a science writer and editor. She self-identifies as a woman on the autism spectrum and serves as the science editor for the Thinking Person's Guide to Autism.

    (Photo Credit: Double X Science)
  • ‘My ‘condition’ has been as helpful in the trajectory of my work and career as it has been difficult for me personally.’ – Tim Page 3 of 6
    'My 'condition' has been as helpful in the trajectory of my work and career as it has been difficult for me personally.' - Tim Page
    "There is no doubt in my mind that my 'condition' has been as helpful in the trajectory of my work and career as it has been difficult for me personally," said Tim Page, who is opposed to the idea of even metaphorically bleaching the autism out of people.

    Mr. Page is a Pulitzer Prize-winning music critic and a Professor of Musicology at the University of Southern California's Thornton School of Music. He is also a professor at USC's Annenberg School for Communication and Journalism. Mr. Page is the author of a memoir, Parallel Play: Growing Up With Undiagnosed Asperger's.

    (Photo Credit: University of Southern California)
  • ”It is not an autism treatment. It’s place may be in the swimming pool, but it’s not in your child.’ – John Elder Robison 4 of 6
    ''It is not an autism treatment.  It's place may be in the swimming pool, but it's not in your child.' - John Elder Robison
    "The MiracleMineral.org website claims the product produces chlorine dioxide, which is claimed to have dramatic powers of healing. Be careful! The FDA has issued explicit warnings about this product. Chlorine dioxide has its place in municipal water treatment, flour bleaching, and even factory disinfecting. It is not an autism treatment. It's place may be in the swimming pool, but it's not in your child," said John Elder Robison.

    Mr. Robison is is the author of Look Me In The Eye and Be Different. Mr. Robison was diagnosed with Asperger Syndrome as an adult, and has served as a panel member for the Institute for Autism Research, the Centers for Disease Control and Prevention, the National Institutes of Health, and Autism Speaks.

    (Photo Credit: JohnRobison.com)
  • ‘There is not one atom of my body that would risk her health to ‘fix’ the beautiful, precious, ingenious mind she already has.’ – Jennifer Cook O’Toole 5 of 6
    'There is not one atom of my body that would risk her health to 'fix' the beautiful, precious, ingenious mind she already has.' - Jennifer Cook O'Toole
    "I am often confused how, among those who love, serve, or advocate for those of us on the spectrum, one can profess respect for and admiration of the 'different but not deficient' minds we possess, yet concurrently look to 'cure' those minds," said Jennifer Cook O'Toole. "That is a sentiment which, I promise you, makes me feel neither respected nor admired.

    "I am a woman. That is not a defect. I do not wish to be cured of my femaleness. I am a redhead. That is not a flaw. I do not wish to be blonde. I am an Aspie. It is not a disease, and, much as it might surprise the general population, I do not wish to be neurotypical.

    "My Aspie mind is what enables me to see patterns you do not, to accomplish tasks you cannot, and to handle obstacles you will not. As the mother of a Make A Wish Kid, I understand to my core what it is to want to "cure" that which diminishes a child's existence. That same child of mine is also an Asperkid. And there is not one atom of my body that would risk her health — emotional or physical — to "fix" the beautiful, precious, ingenious mind she already has. Why would I? She is not broken.

    "Tools, I will give to her and her brothers. Strategies, skills, guidance -- all of these. But never would I insult my children by insinuating they need to be "cured." They are Asperkids by design, and I celebrate the individuals they are now and will become. In return, they will bloom into three unique, gifted, precocious people, perfectly glad not to be 'cured' of the amazing lives they get to lead.

    "We may not be your version of normal. Then again, you are not ours. So perhaps the rallying cry we take up will be, 'Cure Neurotypicals Now!' Don't like it? Of course not — but now you know how we feel. Let's just call it a little glimpse into the 'theory of our minds.' Because, believe it or not, we're quite content being us."

    Ms. O'Toole is an educator and the author of Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger Syndrome. She is also the mother of three children on the spectrum, and has Asperger Syndrome herself.

    (Photo Credit: Asperkids.com)
  • ‘It’s a bleach enema. A parent willing to give his child an enema, with a product banned for medical sale, is not a safe parent.’ – Landon Bryce 6 of 6
    'It's a bleach enema.  A parent willing to give his child an enema, with a product banned for medical sale, is not a safe parent.' - Landon Bryce
    "It's a bleach enema. A parent willing to give his child an enema, with a product banned for medical sale, is not a safe parent," said Landon Bryce, who also noted that he feels there are far more pressing issues in the autism community than Miracle Mineral Solution.

    Mr. Bryce said "This graphic about autism treatment outrage expresses a lot of my feeling here — I worry so much more about the study that says a majority of autistic kids are on psychotropic drugs. I worry about how cuts to our school budgets and social safety net are endangering autistic people at every level of society. I would love to see the level of outrage I've seen over bleach directed at this column by Thomas Sowell," Mr. Bryce said, referring to an opinion piece in which Thomas Sowell of the Hoover Institute argues against financial support for the poor and mocks the increasing number of Autism Spectrum Disorder diagnoses.

    (Photo Credit: thAutcast)

The online petition started by Dr. Willingham and Ms. Myers, asking the FDA and the U.S. Department of Health and Human Services “to order a cease and desist on selling, recommending, or administering Miracle Mineral Supplement, also known as MMS or sodium dichlorite solution (industrial strength bleach), as ‘curative’ for children with autism when used orally, in baths, or in repeatedly administered enemas” is available here.

Joslyn Gray is the mother of four children, two of whom have Asperger Syndrome. Read more from her at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and Twitter.

More from Joslyn:

PSA: Please Do Not Try to Bleach the Autism Out of Your Children
Posing for Playboy Does Not Raise Autism Awareness
Court Decision: Jackson, Miss. Schools Banned From Using Handcuffs as Punishment
DSM-5 Changes Aren’t Limited to Autism; Final Feedback Sought

 

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The CDC’s autism rate increase reflected in my house
Why I’m not freaking out about the new autism diagnostic changes

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