To the Editor:
I am writing in regards to the decision by the Watertown Free Public Library to host an event sharing and elevating dangerous misinformation about autism while promoting snake-oil “cures.”
On March 12, an organization called TACA (Talk About Curing Autism) has reserved a room in our library presenting Dr. Theoharis Theoharides so he can share his views on an unsubstantiated and unproven link between autism and “brain inflammation.”
To be clear, TACA is an organization that preys upon families of autistic children by promising them a cure through the use of intensive therapies, including a number of highly controversial and dangerous treatments such as chelation therapy. These therapies have never been shown to have any effect on “curing” autism, a neurological condition that cannot be changed, and groups like TACA ensnare desperate parents and mislead them into spending significant amounts of money and potentially harming their children.
Among the things TACA encourages, according to their website:
- No vaccines or a delayed/selective vaccine schedule, despite overwhelming evidence that vaccines do not cause autism and that vaccines given as recommended are a necessary and critical component of overall public health.
- Chelation therapy, which is indicated only for removing heavy metals from the body (anti-vaccine proponents believe vaccines impart mercury and other metals into the bloodstream, which is untrue). Chelation therapy is NOT indicated for the treatment of autism and is incredibly dangerous, as it leaches vitamins and other minerals from the body. At least one child in the US has died as a result of autism-related chelation therapy, despite being under the supervision of a doctor.
In addition to TACA’s concerning medical protocol, Dr. Theoharides has been promoting his unsubstantiated research claiming that inflammation and immune response causes autism. Conveniently, he holds the patents to several not-FDA-approved medications that he claims will have an effect on development in autistic children, and links on his website to where you can purchase these medications. However, he has yet to do a single double-blind study, nor has anyone else ever found any link between these drugs and so-called “autism recovery.” Dr. Theoharides promotes his beliefs at events like AutismOne, a conference known for having Jenny McCarthy as its keynote speaker. AutismOne also hosts the Genesis II “church”, which has developed and sells chlorine dioxide (bleach) enemas to purportedly cure autistic children of alleged intestinal parasites. Dr. Theoharides proudly displays this affiliation with AutismOne on his website and has made several presentations there since 2009.
Quite frankly, it is terrifying that a group like TACA, which poses such a significant risk to the health and well-being of some of Watertown’s most vulnerable children, would have a platform at our beloved Watertown Free Public Library. The library’s own meeting room rules states that the library director (Leone Cole) or its board of trustees (Penelope Peoples, Sheppard Ferguson, Tim Tracy, Carol Tierney, Raya Stern, and Gracemarie LeBlanc) can refuse to host any group it believes is not serving the best interests of the community. In my emails with Ms. Cole, she said she understood my concerns about this event, but still she declined to act without the support of the trustees (despite not needing their consensus according to library rules). None of the trustees have as yet replied to me. I struggle to understand why the individuals in charge would not take the necessary steps to protect Watertown’s Autism community.
Not only are Dr. Theoharides’ claims dangerous, they also send the message to Autistic kids and adults that they are something to be “fixed”. Please think about the autistic people you might know. Dangerous medical claims hurt them and their families, and parents of autistic children are susceptible to the promises of so-called experts who lure them in with expensive “cures.” While our community very much needs greater supports and resources, this is not it.
If the Watertown Free Public Library executives and trustees do not take action to remove this event from the calendar – effectively putting Autistic children and their families at risk – then their leadership must be questioned. Our children deserve better.
Sincerely,
Julie Cotton
Concerned citizen, library patron, and parent of two autistic children in Watertown.
This is pretty upsetting. I thought libraries were supposed to be used for knowledge, not spreading misinformation. I spoke with the events coordinator who told me that “anyone is welcome to talk about their beliefs here.” And that’s admirable. But there’s a difference between spreading lies and talking about your beliefs. I guess giving a room to holocaust deniers and 9/11 truthers is just “talking about beliefs”. Oh. Right. They already had 9/11 truthers there.
Can you please clarify what the misinformation is that is going to be spread? Have you read the papers on this issue or are you just forming your opinions based on what others have told you? Educate yourself before you spread your own misinformation:
http://www.ncbi.nlm.nih.gov/pubmed/25941080
http://cornellsun.com/2016/02/25/whats-up-doc-gut-feelings-how-the-bacteria-inside-of-you-could-be-changing-the-way-you-think-feel-and-behave/
http://www.scientificamerican.com/article/gut-bacteria-may-play-a-role-in-autism/
Not sure that the Watertown Free Public Library has any obligation to refuse space to quacks just because you disagree with their message. Just as they have no obligation to refuse space to conspiracy theorists because someone else disagrees with their theories.
But, of course, this is 2016, and if one person complains because something doesn’t meet their sensibilities it’s a travesty and a threat to the public good. You already know what your children with autism need. You already know the kinds of support that your community would benefit from having.
Fighting the Watertown Free Public Library isn’t productive. There are going to be a lot of things in life you won’t agree with or like. This comment is probably one of them. Time and energy are limited resources. Why not put yours into putting together your own presentation and get yourself to the WFPL to host your own night like this?
SHE might know what her children need. Maybe other attendees won’t be that informed. Which is the entire point of what she wrote. And, quite frankly, if a library is allowing groups to come in hawking bad science that could actually hurt people, I can’t imagine why you or anyone else would question the author’s decision to fight this fight. That last part of what you wrote — put yourself in the author’s shoes. Mother of two Autistic kids. And you want her to build a PowerPoint? She’s doing a noble thing. Just walk away and understand that.
Proffering misinformation, especially where children are concerned, seems antithetical to what society expects of a town library. Thumbs down.
Way to follow the mainstream and promote the suppression of other peoples opinions and findings. Great job promoting the suppression of freedom of speech in a PUBLIC library. Awesome job trying force your own opinions on others because you find it to be superior than theirs. And fantastic job representing the Watertown Autism Community. I was not aware that it’s mission is to be a community activist group who is trying to “protect” the citizens of Watertown from the evil snake oil sales people. This is pathetic and closed minded and you should be ashamed of yourself for thinking that your doing good for our community. The fact of the matter is the science is not settled on this issue and there are many different approaches and theories that are trying to find what works best to help with autism.
The person giving the talk, Dr. Theoharides received his PhD and MD from Yale University and is a Professor of Integrative Physiology & Pathobiology at Tufts University. Your claims that TACA is “preying” on the minds of our community and children is unfounded and and closed minded point of view. Perhaps you put to much faith in the mainstream “quack watch” and follow the whatever Dr. Offit and his constituents have to say on the matter.
Perhaps you should go to the talk and ASK YOUR OWN QUESTIONS, have a conversation, listen to what it’s all about, and form your own opinion. Perhaps then you should schedule your own talk at the public library so that you can inform the community about your own theories, scientific findings, and whatever other opinions you have.
Any parent of a child with autism should be seeking and interested in evidence-based treatments for their children. TACA is a support system for families providing education, resources and meetings for networking. There is no snake oil, bleach or Jenny McCarthy. Inflammation is scientifically associated with autism and you can find that in a basic search. There is nothing but information provided at the meeting. We the people are absolutely free-willed and able to decide, along with our medical team what’s best for our children and their individual needs. There is nothing controversial or dangerous here. I’ve attended many meetings and it’s only provided help for me and my children.
TACA is actually an excellent non-profit that has helped my children with autism quite a bit. They don’t “promote” anything. They give you information and direction and you do your own research and you decide if the treatment is right for your child. Autism is a MEDICAL issue. Treating the root cause is way more complex than many realize. It is absolutely not a one-size-fits-all protocol. When we do treat these issues successfully, we see improvements in development and behavior. We are not trying to fix our children because we don’t accept them for who they are. Quite the contrary…I love my children so much that I want them to feel good and live the fullest life possible. Let’s face it… Anyone deserves that.
It is amazing to me that people have opinions on what is and is not right for each child affected with autism, especially when it is NOT their child. There are many approaches to autism and it is the rights of parents to learn about the treatments and scientifically proven medical approaches to help their own child as each has his/her own individual issues.
I suggest that people attend and listen to Dr. Theoharides lecture and draw their own conclusions, rather than attempt pathetic scare tactics and bullying the public library. Regarding the organization, TACA, which is run mostly by volunteer parents of children who are affected with autism, one can only draw the conclusion that they are looking out for the best interests of their children and other families as well.
I know the Watertown library and it’s board of directors will not cave to the opinion of one person, while many other parents look forward to attend and continue to search for answers for their affected children. Their “never give up” attitudes, by attending an educational meeting of a worldwide speaker; PhD and MD from Yale University; and Professor of Integrative Physiology & Pathobiology at Tufts University, should be reinforced and supported by the community, rather than torn down by an angry parent who still doesn’t have all her facts straight. The community should be standing behind these parents in every possible way, rather than spending time writing scathing articles and unsupported comments like the ones above.
Autism affects 1:68 kids today. And the numbers are climbing DAILY. I know everyone knows at least one person affected with autism. It is THAT prevalent now. Please support the family members of special needs community in their fight for quest for answers in the lives of their affected children. Stop listening to the rant of one misinformed person and “listen” to the 3.5 million people in this country affected with autism spectrum disorders. Attend this highly scientific meeting and show your support for this incredible doctor and caring organization.
Dr. Theoharides is a very well respected and published doctor.
Julie Cotton should really do some research before she starts throwing stones. I’m guessing her children are very young because she’s clearly not educated on what TACA volunteers do. Sorry, Julie but I’ve been where you are. You think you know everything about autism, but you won’t understand that you don’t until years from now. Do yourself a favor and stop reading silly books by Offit and start reading PubMed.
From a mom of a RECOVERED teen who no longer had an autism diagnosis.
Dear Mr. Breitrose,
Understand that your experience is not everybody’s experience. Each of us wants the best for our children and we each find the best solutions. Personally, when I addressed the underlying medical conditions that affect my son who is on the spectrum, he felt better and became better able to fit in the world. I have SO much more to learn, and am quite capable of deciding for myself whether or not I believe certain treatments are worth exploring. TACA has been life-giving for so many people in the community. So have “alternative” treatments, diets, chelation. Nobody is insisting that you or anybody else follow certain protocols, and I assure you, parents are quite capable of deciding what is best for their children. Our community is divided enough as it is, without manufactured hostility based on a different experience or mindset. If you don’t agree with the treatments, the simplest solutions are to (A) Don’t go, or (B) Go and see if any of it makes sense. Who knows…you may make a friend or two.
My mistake…I meant to address the writer of the letter, Julie Cotton.
Ms. Julie I am so sorry you are unhappy with this upcoming parent education event. This is a very negative and threatening letter to attack other parents like yourself that are connected as one community as families living with autism. I am sure you have heard the quote “You’ve seen one child with autism, you’ve seen ONE child with autism.” Together we have so many of the same interests at heart to see our children reach their full potential and remove the pain that some of them experience. Many of those living with autism also have co-morbid conditions such as Gastrointestinal Problems, Sleep disturbances and Seizures among many other health conditions as you can read about it this 2007 American Academy of Pediatrics Journal http://www2.aap.org/pressroom/autismmgmt.pdf TACA has been helping families for over 15 years, I hope one day your family will be one of them.
TACA has helped our family more than I can say, as has Generation Rescue. Everyone is entitled to their opinion on autism, but to deny others the opportunity to learn because YOUR opinion is the “right” one? Imagine if we all though like that …
Everyone is entitled to their own opinion. But I feel that I must refute Ms. Cottons comments and defend an organization that has proven themselves to be one that should be respected. TACA is a non-profit organization that seeks to provide resources and education for families who experience autism. They are families of children with autism helping families with children with autism. They are sharing their experiences with other families of what approaches helped their family member affected with autism. Personally, they have been a life saver for me and my daughter who, now 13, was diagnosed with autism at the age of 2 1/2. The organization itself has a handful of paid employees; all the rest of the work that is done nationwide is on a volunteer basis. This is not an organization, like some other well know ones, that seeks to make gains from other people’s circumstances. Their CEOs do not get paid 6 figures for being on the Board. The staff and volunteers work very hard and on their own time to help families. Ms. Cotton, you should be ashamed to judge an organization of this caliber without knowing the facts! The founder of this amazing organization and the founding group of mothers have given selflessly to the autism community for years. There is one in particular whose son has been fully recovered for 10+ years and she still volunteers her time! If it weren’t for TACA, my daughter would not be on the road to recovery; she is almost there. Thank God I didn’t listen to people like you…if I did, my daughter would not have a chance! And that is what this is all about; a chance!!! A chance that I could improve the health and well being of my child! I don’t know about you, but who wouldn’t do everything they possibly could to help their sick child. I guess it all boils down to one thing…what you believe autism is. If you believe its something that happens to a person and it cannot be reversed, then you do nothing. But if you believe that it is a medical condition, then you do whatever you have to do to bring about healing! I guess it’s just like believing in God. Either you do, or you don’t. But just remember, some things are true whether you believe it or not! Autism IS a medical disorder…Autism IS treatable! Recovery IS happening!!!!
Ms. Cotton:
Can you back up your statement: “a group like TACA, which poses such a significant risk to the health and well-being of some of Watertown’s most vulnerable children….”
If you can’t, you are lying and spreading propaganda.
FYI the accepted vernacular is not “autistic children”- it is “children with autism.”
The evidence is overwhelming and abundant that autistic spectrum disorders in many cases involve neuroinflammation.
Further- gut issues on autism are the subject of a massive supplement in Journal Pediatrics. The article posits that 50% of children on the spectrum have undiagnosed and therefore untreated gut problems:
http://pediatrics.aappublications.org/content/130/Supplement_2/S160
Maybe, Ms Cotton, instead of critiquing the proposed event form a place of ignorance, you should attend and see if you can learn something.
My experience with TACA has been the same as the writer. There is a lot of talk about curing autism by way of diet and this is just not true! Also their workshops provide conflicting information with parent volunteers that have no business or knowledge to give advice.