This wasn’t supposed to be in two parts. It was just that I was so sickened by hearing mercury apologists try and spin this into someone – anyones – Else’s fault than Usman/Kerry’s or indirectly, theirs that didn’t have the heart to finish it then. I’ll try now.
Lets go through the facts. EDTA is approved for chelation of lead. There is some debate whether or not its approved for chelating mercury. EDTA has a poor affinity for Mercury regardless. What can we deduce from that? Either pro-chelationists believe that autism is both mercury _and_ lead poisoning or that lead ‘gets in the way’ of chelating mercury or they simply don’t care and just want to get on chelating because they heard chelation cures autism.
Spinning The Facts
JB Handley says that this tragedy is the fault of the health care system because they don’t conduct trials into chelations effectiveness for autism. This argument is facile. What the US health care system _does_ say regarding chelation is ‘don’t do it, its unproven and can’t be assumed to be safe’. People like Usman/Kerry ignore this advice and go ahead and chelate anyway. A boy dies. JB Handley says: ‘See? Its the health care systems fault!’. Pick the logic out of that if you can.
Handley also goes on (as does Schafer) to explain how dangerous other forms of treatment for autism are. Drugs like Ritalin. I completely agree with him. He then goes on to list all the vaccines reported deaths to the VAERS database. Unfortunately he neglects to mention how corrupt the VAERS database is:
The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.
Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.
Neurodiversity.com
Morality and Perspective
Lately, a few of us in the Neurodiversity movement and a few of the people in the biomed movement have tried to find ways to talk to each other without it descending into flame war after flame war. This process was instigated by Wade Rankin and supported by Ginger at their respective blogs.
Lili from AspiesForFreedom, Clay from AutAdvo, Kathleen from Neurodiversity, Janet Norman Bain and myself have been amongst those who’ve responded with hope and interest.
I don’t suppose the core of our differences will ever be resolved (mercury is/causes autism and chelation is the cure) but I do think its laudable that we can all try as a group to understand each other.
But….(there’s always a ‘but’)…..its very difficult for me to understand how anyone could choose to put their child in harms way – _fatal_ harms way as we know now – for the sake of development that will probably occur anyway. This for me is the absolute root of the divergence between our two camps:
They (not necessarily Wade or Ginger, I mean the biomed movement as a whole) believe that either autism itself or the comorbidities associated with it (and a lot make no real differentiation) impedes their kids development so much that it requires very quick intervention (referred to in biomed circles as ‘cure’ or ‘reversal’). Their general stance is that any kind of intervention is better than doing nothing as doing nothing condemns that child to the ‘hell’ of autism.
When I look at that point of view I’m simply aghast. I find it incorrect on so many levels its untrue. Firstly, autism and comorbidities associated with autism are _not_ interchangeable. Gastric issues are a comorbidity of autism. Lack of speech is a comorbidity of autism (before anyone jumps on me ‘lack of speech’ is not the same as ‘lack of communication’ which _does_ form part of the triad of differences used to diagnose autism). For a ‘symptom’ to make it onto the diagnostic criteria for autism it must mean that that symptom is common in _every_ autistic. A comorbidity is something that can exist in only a few autistics or can exist in non-autistics. This is why you can’t use these things to diagnose autism.
Now what about impediment to development? Autism is called as a ‘developmental disorder’ by the medical establishment. Nowhere in current medical literature that I can find however does it say that development is _stopped_ by autism. This is because it isn’t: *all kids, regardless of neurology, develop in some way*.
One of the things that really disturbs the biomed crowd is their kids inability to speak. I’ve read posts on the Evidence of Harm list that cite this as one of the primary reasons for getting into chelation in the first place. However, the fact is that 90% of all autistic kids go on to speak before the age of 9 (1). They often list other disturbing behavioural issues their kids display such as smearing faeces on walls, biting, hitting etc. Toileting is another difficulty they cite. I have experience with all these things with my own kids and yet they no longer present. Why? They grew out of it. They developed. We examined the issue and worked on it and it went away. Here’s a post by a parent who approached the adults on Aspies For Freedom asking for help in understanding some of the issues her child was facing. Here’s one excerpt:
My next question is VERY embarassing!! Why is my daughter interested in private parts? She definitely has no idea what their for (besides using them for the bathroom). She has never been abused in any way. She just has a curiosity for other peoples privates. How can I get her to stop feeling people up?
The advice came thick and fast to that and other issues this Mum asked for help with. I know from speaking privately with this Mum that her daughters issues in this specific area are well on their way to being resolved.
Kids develop. Their behaviour changes. It might not seem like it when you’re scrubbing pooh off a bedroom wall at 3am but they do.
Its always seemed to me that treatments like Chelation are the Big Mac of parenting. They fulfill a role alright but fulfill it for who? Is it fulfilling for a child who may be harmed or die? Is it fulfilling for a child to come to think of his autism as a medical issue rather than a cognitive difference? Or is this ‘fast food parenting’ for parents? Is it a device to enable them to think that they are doing something? Are there parents out there who have such little self esteem that they believe in biomedical treatments over their own abilities as parents? Please be aware that this isn’t a question of blame or bad parenting. Its more a case of non-confident parenting. And where does that lack of confidence come from?
it can only come from one place – if we as parents are not confident in our abilities to parent our autistic kids, to the point we are more willing to place them in harms way, then that can only be as a result of ignorance about that which we are expected to cope with – autism. Whats the best way to tackle ignorance? ‘Education, education, education’ to quote Tony Blair.
Unfortunately, a lot (the majority) of biomed parents exist and foster more of this ignorance. When Boyd Haley refers to autistics as ‘mad’ and when Evidence of Harm list-members refer to autistics as ‘Parent Worst Nightmare’ or ‘Walking bio-hazards’ or people describe the lives of autistics as ‘a tortured hell’ without biomed intervention then we’re in trouble.
When someone who calls himself an autism advocate says that:
If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic
or:
The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic
Neurodiversity.com
Then ignorance is fostered. And as long as we continue to promote and foster ignorance about both the nature of autism (as oppose to the nature of comorbidities) and about what autism _is_ , then we are doomed to simply produce another generation of people who are ignorant about autism. This is no good for either our kids, the future autistic kids yet to be born or autistic adults who have to live with the denigration that who they are is neither acceptable to society at large nor to those who have hijacked the term ‘advocacy’.
One thing is certain though. My child, Lenny Schafer’s child, JB Handely’s child, Wade Rankin’s child, Camille Clarke’s child – if they are autistic then they will grow up autistic. I hope for the sake of _all_ these children destined to be adults that ignorance has abated somewhat before they take their adult places in society. I hope that parents become more empowered through education about _autism_ as oppose to education about _treatments_ . I hope autism and the idea of aware, self advocating autistics can stop being seen by some as a threat and more of a potential for their own child. How can anyone read AutismDiva’s blog, or Amanda Baggs’ blog and not be consumed by hope and aspirations that one’s own daughter could be as strong, purposeful and exemplary? They did it without chelation or biomed ‘cures’. My daughter is doing it without chelation or biomed ‘cures’.
Parents can educate themselves primarily by _talking to adult autistics_ – the very people their children will become. In order to banish ignorance, you must accept what is inevitable and educate yourself about _autism_ and about _autistics_ . When it comes to how autistics think or how autistics act, Lenny Schafer is not an expert. You are not an expert. No Doctor is an expert (unless s/he happens to be autistic). When it comes to autism – *autistics are the experts* .
When you use chelation to treat autism you are effectively using a nail gun to attach a sticking plaster to a cut. And when you do, you are only adding to the mystique and stigma surrounding autism – talk to autistics, wave away the mist.
(1) C. Lord, S. Risi, A. Pickles, “Trajectory of language development in autistic spectrum disorders,†in Developmental Language Disorders: From Phenotypes to Etiologies, edited by Mabel L.Rice and Steven F.Warren (Lawrence Erlbaum Associates, 2004) (Via).
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