A dialogue between Roger Kulp and me

Roger Kulp raised some very interesting points and questions in a comment on my magical, mythical neurodiversity movement blog, and I'd like to take the time to answer it in detail.

Roger writes:

"I gotta say you are one of the saner ND bloggers I have read, you and John Elder Robinson, although I have no idea what a "woo fighter" is."

I appreciate that Roger, but I wish that people wouldn't put a label on what kind of blogger I am unless they are using ND the way I would: equal rights for all, acceptance and appreciation for all. That's not how most folks who label themselves as anti-ND are using the term (I'm not placing that label on you, just noting how those who do label themselves that are using it). So, if you meant ND in the way I and many pro ND define it, then that's fine.

A woo fighter is someone who fights against woo, which I will provide several definitions for:

n.(or adj), the way a person is when they uncritically believe unsubstantiated or unfounded ideas. Short for "woo woo." http://www.urbandictionary.com/define.php?term=woo

Skeptico also has a good definition here: http://skeptico.blogs.com/skeptico/woo-woo.html.

And I have defined it in the HBOT blog below: Woo, for those who don't know, is any treatment, therapy, belief, in something that has no scientific evidence to back it up. None. Like crystals for healing. Acupuncture. Homeopathy. Some woo is harmless. Some is not.

"I saw a post today over at "Thelma and Louise's" "dumbass" blog,that said those who don't support neurodiversity just "have too many problems", which pretty much sums it up."

That's a complicated one. Isn't one of the greater problems that folks who are against it are using a different definition than the one I provided, saying it means doing nothing for people who have disabilities to help them improve, to do better, to have the support they need. You cannot hold that people are of equal value and human dignity and then not help them. At least, I don't think you should.

"I can assume your own children just had plain old garden variety autism, and never had to deal with regression, intellectual disability,autoimmune,or mitochondrial disease in addition to the usual addons like seizures,developmental delay, and sensory disorder ?"

Roger, if you've read my blog posts, then you'd see just how wrong that assumption is. I would direct you to Detritus, http://www.kwombles.blogspot.com/, to read some of my personal pieces. Developmental delay is what autism is: it is a pervasive developmental delay. My son does have an intellectual disability, and all of my children have sensory issues. My son has a blood clotting disorder as well, and had a stroke at the age of 9 and is at risk of additional blood clots which could result in DVTs, pulmonary embolisms, and strokes.

Epilepsy is present in about 1/3 of autistics, so while more common than in the general population, it is not an inherent feature nor what I would call a usual add-on. Auto immune and mito disorders in relation to autism are still fairly new concepts, despite what those at AoA would like to argue. Mito disorder estimates are at 7% in autistics. I think I would need to wait and see the studies over the next several years before reaching an opinion. So, again, I would not at this point be willing to say they are usual add-ons. Since I have not had my children tested for mito disorders, I can't speak to that. They are healthy children, though, and show no signs of autoimmune disorders, although autoimmune disorders run in my family.

"Would you still believe in neurodiversity if your children had all of this stuff in addition to autism ?"

Would I still believe in equal value, equal human dignity, respect, acceptance? Yes, I would. Would I still believe in doing everything I could to help my children achieve their potentials, to be successful in their lives, whatever that definition of success would be? Yes. Do you see how incredibly offensive it can be when someone accuses you of believing, following, advocating a position you do not? Where have I ever written that I believe that particular distortion of neurodiversity that proponents of anti-ND are putting forth. I never gave myself a ND label. I never labeled myself. And I've argued that anti-ND/ND and vaccination/anti-vaccination are artificial divides constructed by those who want to see the world in black and white.

"IVIG is a good example of something that is overused. It should only be used for those who have both autism,and demonstrated autoimmune symptoms. Most mainstream doctors will require an ironclad textbook diagnosis of a specific autoimmune disease,before they will give you IVIG. If I am any indication, autoimmune disease in autism is a patchwork of random autoimmune stuff from various syndromes,but nothing specific. You would have a hard time finding a non-DAN! doctor giving you IVIG for this,but a DAN! would. The pattern is that the autism symptoms always are worse in between febrile flares,and disappear when a fever comes on, like I have now. So IVIG in some cases, yes, chelation no."

There is a study showing that autism behaviors lessen during fevers. I'm sure there is also a plethora of anecdotal evidence noting that children with autism have less behaviors when they are sick. It doesn't mean I want to make my children sick so they are easier to handle. In fact, with my son, sudden stillness and quietness was always a huge warning signal that something was wrong.

Here is why I wrote I am against IVIG for autism:

Audrius V. Plioplys Intravenous Immunoglobulin Treatment of Children With Autism J Child Neurol, February 1998; 13: 79 - 82.

"Given a positive response rate of only 10% in this study, along with the high economic costs of the immunologic evaluations and the intravenous immunoglobulin treatments, the use of intravenous immunoglobulin to treat autistic children should be undertaken only with great caution, and only under formal research protocols."

"After spending a few weeks in one of their Yahoo! groups, I can say. The chelation people are the most fanatical of all."

I stay away from the yahoo groups and forums, other than the yahoo group I created --woohoo, member of one! -- it's dormant, as I shifted attention to sciencerocks.proboards.com, the countering facebook group, and Raising Autism. I've heard plenty negative about various forums. It's why my friends and I created the Countering facebook group and Raising Autism forum for parents with ASD children and people with ASDs to get together and be supportive, accepting, and share. You're welcome at both.

"I wouldn't be so hasty to knock HBOT. Look into it for other neurological conditions if you don't think it works for autism.Get your information from a nonautism source."

Please see my HBOT blog below. If I weigh in on a particular treatment or therapy in relation to autism, it means I have actually read the scientific literature on it and based my decision on the studies that have been done.

"I can see biomed for conditions like mitochondrial or weird autoimmune diseases,where the medical issues contribute directly to the severity of the autism, but what gets me are these fanatical parents who do biomed for simple mild Asperger's. I met a man online in his early 30s, a few months ago,whose autism was strikingly similar to mine. He even had some of the same immune,and regression issues that I do.His autism was triggered by Lyme Disease when he was eight months old, the way mine was triggered by meningitis when I was five months old, so it can happen."


I don't believe I've said I'm against biomed. In fact, I've stated I'm for treating underlying medical conditions with evidence-based medicine and nutrition. I recognize that medicine is part art and part science, so there's some latitude there. I'm against those extreme parents co-opting the biomed label and arguing that IVIG, HBOT, chelation and unproven quackeries are biomed.

By choosing to label parents as either biomed or ND, the "biomed" parents are creating a false divide and making themselves the stars of their own plays. It's no longer about their children. It's about them arguing they are the better parents because they would go to any extreme to "recover" their child. That's frakking offensive in so many ways. I don't have to recover my children, I don't think I lost them. And I think it's offensive to children on the spectrum to think that they have been lost, that they "died," that it would have been better if the child had cancer.

The closest I've come to labeling is when I use the label someone has already applied to her/himself and when I've called the parents who believe mercury caused the autism the mercury brigade. I can't claim originality there, as it is a label that has been applied to them by others. Or when I flat out call them a name. But then, I am being specific to the individual and I'm backing up why the person was called that name.

I hope that this answers some of your questions, Roger, as to how I have formed my opinions on this matter. As science advances, my opinions will absorb the new information and alter to fit the accepted science. To do otherwise, well, to borrow Thelma and Louise's apparently favorite word, would make me a dumbass.

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