Thursday, September 06, 2007

In Biomed Parents' Defense

Bad combo, first week of getting 5 off to school and trying to write on this subject. I tried anyway, despite lack of time/energy; hope passion was enough:

I'd like to try and give another side to a couple of discussions surrounding the rationalizations of parents who choose biomedical interventions. The neurodiverse seem to have an interest in the inner workings of the biomed mind: Kev's account of lamentations of a biomed board and their loss of faith; Mike Stanton's summary of biomed and its motivations

The zeal at which many on the neurodiverse will go at purveyors of biomedical treatments for autism is truly a wonder. It is relentless, impassioned, sometimes merciless and dirty. But, after all, it's for the kids. Protecting the kids is the banner that they can rightfully fly. Most of venom is injected at the doctors and theorists of unproven therapies and causes. But the fervor doesn't end with the doctors of these various practices, they continue on to those parents.


Most of the time, the attacks on biomed parents are focused on those parroting the causation and 'curation', but in my opinion, it frequently paints a large brushstroke across almost anything not recommended by the AMA, FDA, CDC, JAMA, and any other acronym. Frequently, the fact that someone somewhere touted a therapy, vitamin or diet as a 'cure' for autism; the therapy, vitamin or diet is blasted as quackery, glossing over the potential for some of these things to help medical conditions. When pressed, of course, neurodiverse will relent and say that solving autistic children's medical conditions are a necessity and that there may be value to some kids and conditions.

But with communication being an issue, it is often extremely difficult to tell when a child is suffering an ailment vs when it is part of normal issues when dealing with the child's frustrations, sensory overload and the like. What's frustrating for the parent is that mainstream medicine will often look the other way, hiding behind the cloak of 'it's part of the disorder'. That's one unfortunate reality that drives autistic parents away from the mainstream and into the waiting arms of those from every end of the alternative spectrum. A parent with a screaming autistic child, just like those who have screaming neurotypical children, are looking for a reason for their child's behavior. It does not have to be 'part of the autism' necessarily. If mainstream would stop looking the other way when dealing with autistic's issues (maybe have specialists in the field?), then you would find many parents like ourselves moving away from alternative arena.

I wholeheartedly agree that we need to expose those touting a cure or radical recovery, but that does not mean that the observations of improvements by those practicing biomed should be thrown out. Just because those doctors practicing biomed reach the wrong conclusions doesn't mean the premise is wrong. I've read of countless parents who have seen drastic improvements putting their child on a GF/CF diet. The wild notion that 'opiates' are generating autistic symptoms doesn't negate that fact.

I hear frequent accostings on parents saying that they are just looking for the 'normal' child trapped inside their autistic child (Stepford children was the term most recently used). Maybe it's me and my situation of having two children on, shall we say, 'different' ends of the spectrum. One is verbal and some minor issues with communication and interactions; one non verbal with many issues with expressing herself and interactions. It gives me a unique mindset about where kids are on spectrum and what their goals can be, that they can and should have different goals, objectives, and therapies.

I just feel that parents need to get through the grieving process, one of them being denial. But beyond that there is both an acceptance AND yet a desire to improve their issues. Hand flapping is not only a 'symptom' of autism, it is also potentially a distraction; a way to get focused and a way to stay out of focus. It's not about the embarrassment of the child flapping in the supermarket, it's about helping that child to focus that drives a parent to look for ways to minimize the stim. It's be about improving concentration, sometimes even preventing injury. A parent should not necessarily second guessed as t their motives of minimizing 'autistic symptoms'

I also feel that many parents are put into this 'keeping up with the Jones' kids' bucket when they do not deserve to be. I have evolved in my realizations enough to know that the neurodiverse are not about keeping autistics the way they are, but enhancing and celebrating WHO they are, regardless of successes or failures. I think it's time to recognize that biomed parents are not the idiotic, status seeking, monsters that they are often painted as in the ND 'media'.

3 comments:

mcewen said...

For my two cents, I think we [me?] overlook that whilst there are lots of children on the spectrum, as parents we have a spectrum of different view points. I just prefer to keep within the confines of the bell curve.
Best wishes

Kev said...

"The zeal at which many on the neurodiverse will go at purveyors of biomedical treatments for autism is truly a wonder. It is relentless, impassioned, sometimes merciless and dirty. But, after all, it's for the kids. Protecting the kids is the banner that they can rightfully fly. Most of venom is injected at the doctors and theorists of unproven therapies and causes. But the fervor doesn't end with the doctors of these various practices, they continue on to those parents."

All absolutely true. I am constantly amazed at the morals displayed by purveyors of quackery and I go after it/them as hard as I can.

As for parents, as I've said before, Biomed is also a spectrum. A parents trying fish oil is not the same as a parent trying Lupron.

Sometimes a parent sadly becomes so enammoured of a quack (JB Handley and Rashid Buttar for example, Erik Nanstiel and the Geier's)that they willingly and whole heartedly become PR machines for these quacks. When that happens, as far as I'm concerned they're fair game.

Then there are the parents who shoot video of themselves chelating their kids with IV garlic and vinegar and post it on YouTube. They're fair game too.

The status of 'parent' does not equate to sainthood or automatic absolvement of what is pretty much abuse. Parents lie, exaggerate and deny for their own reasons but when these reasons start to influence other peoples decisions then they (and I do include myself in this group) need to be held to account.

Jenny McArthy is - I hear - going on a tour representing TACA. Is a woman who believes her son is an angel (literally, not figuratively) and who believes she is an Indigo Mom, part of a race of aliens came down to advance the next stage of human evolution really a good person to be talking about autism do you think? Should I not blog about her because she holds the title 'parent'?

Casdok said...

Interesting blog. You have covered a lot.