This morning I received a digest from a Yahoo! group I joined, National Autism Association-NE Ohio. Almost every posting in the digest was about "biomedical" treatments (bizarre diets, detoxifying your kid, super expensive conferences on wacky combinations of the two previously mentioned issues, the special masters' finding). I have to say, I just got totally pissed. Really. Those of us living with a child on the spectrum do not have the time to fool around with waste of time "treatments." So I fired off this letter to the posting administrator:
I believe I am confused about the mission of Autism Northeast Ohio. I thought it was an organization for promoting therapeutic information, scientific and pediatric care and options, and support for families. Instead I opened up today’s digest and saw that the first couple posts contain what amounts to a continuing and inexplicable dialogue about the so-called vaccine connection and an entire (expensive) conference on voodoo diets.
The question about autism and vaccines has, I believe, been settled. I know people want to believe there is a connection. There are also people who want to believe there are aliens living among us, that there was a second gunman on the grassy knoll, and that Anna Nicole Smith was a “star.”
We don’t walk around saying that going to college causes mental illness, even though the typical schizophrenia patient develops signs of the disease between the ages of 18 and 25, the time frame when a lot of kids go off to university. That’s just silly. Yet some insist on promoting this same fake relationship between childhood vaccines and autism. It is a waste of time and resources, both of which are extremely limited.
I would like to see more information about real therapy (music, speech, OT, play), more information about working with ASD children in their classrooms and communities, the ins and outs of the IEP process, more information about sibling relationships and the wellness of the whole family. In short, stuff that is based on vetted, refereed science and research. My daughter deserves to be supported with fact and truth, not suspicion and coincidence.
I would say that my email went over like the proverbial toot in church, because I got this back. I have inserted my own responses in bold. No, I didn't send these responses to the writer, because what is the point? She has an agenda and she really, really believes in it. But I want you to see what people like me are up against when it comes to defending science against, for lack of a better word, crap.
If you go to our website at www.autismnortheastohio.org, you will be able to read our mission, who we are and what we do. We do NOT endorse any of the varied therapeutic interventions for autism but support informing the population about them. We support and fund a variety of them, based on what the family that applies for support wants. We are not a clearinghouse of therapies. Therefore we will post information about a variety of therapies.
We applied for a grant to help with Ellie's music therapy. Probably won't get it now.
If you noticed, yesterday ot the day before I also posted info about upcoming workshops that we organize. The topics are varied from taxes to neurofeedback, special ed law, and biomedical testing. If I come across other resources such as workshops or articles about something relevant to autism, I post it too. And while NAA-NEO does some of the resource and article posting, we are also in the process of fundraising for families like yours, which is our main goal.
I'm not sure it is their main goal...I think their main goal is to push neurofeedback and biomedical. I have seen very little about special ed law lately, although they are trying to schedule an IEP resource meeting with Judith Saltzman, who practices SpEd law here in town. The bulk of the workshops are about gluten free casien free diet and immune system malfunction due to (you guessed it) vaccines. In short, voodoo.
Therefore I can only provide resources to the mailing list if I have the time or if I happen to see it someplace else and repost it. I we are unable to provide a balanced, scientific newsletter filled with the info you requested on a regular basis. I recommend that you join other groups for this type of resources on Yahoo or elsewhere, just go a search for autism, aba, autism and education, etc. as we do not specialize in any of these particular areas.
Is she admitting that their newsletter is unbalanced and unscientific?
I posted about the vaccines issue b/c I thought it was relevant because 2 cases were yesterday defeated in vaccine court, which is an establishment by government, deciding about the safety of vaccines for all, with overwhelming conflicts of interest. I personally think that is disturbing. One case in 2008, btw, won in vaccine court, which proved that that are some cases in which a predisposition (in that case mitochondrial dysfunction) could be a risk factor and once vaccinated, the child could become autistic (the Hanna Poling case). There is no one size fit all medicine or education for the the general population, but especially not for our kids.
Information about the Poling case is linked below. The ruling in that case is very narrow and probably will never be used as precedent in future cases. I do not think the special masters have a conflict of interest at all--they are looking at real science in this area as it relates to toxic torts and pharmaceutical malfeasance and they come to the legal conclusion that there is no proximate cause of injury and therefore no awardable damages. That's first year Torts at law school. Pirate lawyer friends, feel free to help me out here.
Last, please don't be disturbed by biomedical emails. If you don't want to read them, delete them. For many, many folks, biomedical brought better health, and in some cases significant improvement in autistic symtoms. Many parents want this information from us.
I am not to take sides here, NAA-NEO is not. We are supporting it all. But if this is too much for you to deal with, let me know and I will take you off the list.
I am not disturbed by them. I am angry that resources are being wasted on talking about an issue that is not an issue. The plural of anecdote is not data. Stories are not science.
Here's what I will say one more time about vaccines: they save lives. My husband, the intrepid geneologist, is helping out the LDS church by indexing their geneological records online. So many death recores he indexes from the late teens and early twenties are full of children's names, children who died from rubella, typhoid, meningitis, the flu, whooping cough--diseases we can prevent. Diseases we never have to see again, if everyone would stop panicking and just get the damn shot.
My kid may have special learning and developmental needs, but at least she won't die from the measles.