Autism, Respect and the Mercury Militia

25 Oct

What was a disagreement about the causes of autism is widening into a war. This isn’t a war between parents and scientists. Its a war between one set of parents and a group comprised of other parents, scientists and autistics themselves. Its a war between flexibility and acceptance on one side and a rigid determination to ‘cure’ on the other.

To cure what? Good question. Some believe that autism and its attendant comorbidities are interchangeable. That constipation and a different way of looking at things are the same thing. That dyspraxia and a lack of imaginative ability are the same thing. Others believe that the two things are quite separate. That the comorbidities that are attendant with autism in _some_ people cannot be used to define autism. That the condition of being autistic bequeaths gifts as well as troubles (and it does bequeath troubles, lets not pretend it doesn’t) and that keeping the troubles is a small price to pay for keeping the gifts.

There are lots of questions that arise from these ideas of course but lets further examine the stance of the opposition to these two camps. For those that see autism as a medical as well as developmental issue there seems to be a residual pool of dislike, verging into outright hatred for those that don’t. They think that their opposition are abandoning kids to their horrible autistic fate. For them there are no shades of grey – its either black or white. These people also seek to play down and even attempt to rewrite official diagnostic criteria to downplay the ‘higher’ end of the spectrum.

Mr Lietch (sic) thinks it is in the child’s best interest to do absolutely nothing to ameliorate this condition [the writers son] . And, he and his associates knock parents for trying to help our children

John Best Jr

This condition. Autism, one assumes. The question to which I repeatedly put to John Best was what constituted autism? Best constantly (and still does) fails to appreciate the distinction:

…You claim head banging and feces smearing are not autism. Is this supposed to obscure the issue? These are not normal and are very much a part of autism….

John Best Jr

Up until now all we have is debate – its a debate that takes no prisoners to be sure, but its a debate nonetheless. However, things invariably take a turn for the worse:

Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies”

Sounds diabolical doesn’t it? Us sneeringly cruel ‘neurodiverse’ (sic) want to stop people helping children. Something of bizarre belief seeing as quite a lot of people who consider themselves aligned with the notion of respecting autism are parents themselves. But wait! We forget that…

Anyone who is not chelating to get rid of the mercury is guilty of child abuse. Every doctor who is not telling their patients to chelate is guilty of malpractice….. Any parent who listens to the doctors tell them that there is no known cause or cure for autism is too damn stupid to have kids.

John Best Jr

Except of course the truth is somewhat different. The truth is (as I have repeatedly said) that respecting autism is not the same thing as respecting someone gastric issues. If your child smears faeces then find out why and intervene. If your child bangs their head on the wall, buy them a scrum cap, figure out why and intervene. If your child has gastric issues, find out what they are and intervene. *If your child is mercury poisoned then get a proper doctor to chelate them*. But don’t fool yourself that by removing someones need to bang their head against a wall you are removing their autism as you are not and cannot. that doesn’t mean you shouldn’t do it. It does mean you need to have realistic expectations. It does mean you need to be prepared to look at your child at the beginning, during and end of the process of treatment you have for them and say ‘I would love you no matter what’. You need to understand that because someone can’t speak doesn’t mean they can’t hear and to hear who they are described as ‘rotting in an abyss’ or ‘worse than hell’ or ‘diseased’ is going to do that child no good at all.

Frequently those if us who believe in acceptance are told by those that don’t that we are ignoring childrens needs:

And, Kev, have you done research on the trailer-dwelling coo-coos you now are affiliated with? You keep harping on the symptom profile of autism. Look, mate, our kids ALL share the same physical symptoms. I had twin autistic boys over to my house this weekend. They are six. They’ve never been treated. They can’t talk, much less function, they require 24 hour care. They have all the same physical issues my son HAD, which have since resolved. In your coo-coo world these parents would do nothing. Shameful and idiotic.

JB Handley

I have to admit to not being too sure what ‘coo-coo’ means but I’m assuming its not good. As ever though, the point is missed – no-one, repeat *no-one* is saying parents shouldn’t intervene where kids can’t talk or can’t function and I challenge JB Handley (or anyone else) to find any statement where I have advocated that belief. Its increasingly hysterical fear-mongering because its rapidly dawning on these people that they are looking increasingly fundamentalist and fringe.

You might note I’ve quoted extensively from JB Handley and John Best Jr here. I do so because they are both strongly affiliated with Generation Rescue, the group that apparently gives parents the knowledge to make an informed choice. Yeah. Knowledge like:

There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning

Generation Rescue.

So, John Best Jr and JB Handley are all about promoting choice and informed decisions. So much so that they launch into full on attack mode and misrepresent people’s beliefs. Sometimes the attacks get very, very personal indeed:

Muslim terrorists who fly planes into tall buildings have a different set of beliefs than others. Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies” and go to extreme measures in attempts to discredit those people are in the same class.

John Best Jr

John Best associating the World Trade Center attack with my belief that acceptance and flexibility is best. I couldn’t quite believe he’d actually said that so I asked for clarification:

You spout your nonsense in much the same way that terrorists shout for Allah before they blow things up with bombs strapped to themselves. That agenda is more than a little bit wacky to most people who are thinking straight.

John Best Jr

Yup, he meant it all right. Don’t forget, John Best Jr is a ‘Rescue Angel’ – one who is charged by Generation Rescue with informing parents about mercury and chelation. He is a spokesman for Generation Rescue.

The populace of Generation Rescue have a particular dislike of Kathleen Seidel. They see her as the ‘spokesperson’ of ‘the neurodiverse’ probably because of the domain. In a very disturbing attack, Best again mistakes autism with comorbidity, goes after Kathleen and at the same time confirms that for him, ‘better dead than autistic’ is certainly true:

..So they miss out on curing their children and the kids wind up spending their lives in institutions. In effect, they never enjoy one second of the lives they could have had if only the mercury had been removed from their brains. Ms Seidel might as well have put a bullet in those kids so they would not have suffered. Does that sound about right, Kevin?

John Best Jr

One wonders – is ‘better dead than autistic’ a policy decision of Generation Rescue?

John Best, that (typical?) fine, upstanding member of Generation Rescue also has views on the failings of the diagnostic criteria for autism:

Your adult Asperger’s friends would have been called by a different name when I was young and nobody was aware of the effects of the mercury they’ve been shooting into us since the 1930’s. They would have been called nerds.

John Best Jr.

Nice.

Best is, of course, attempting to paint all within the ‘neurodiverse’ (sic) movement as AS. Of course, his theory founders on the fact that it is not. But still, I wonder – is insulting autistics another policy of Generation Rescue?

I don’t believe for a moment that everyone in the Biomed community thinks like Best, or Handley come to that, which makes it a pity that so very many in the Biomed community see that our thoughts as a threat to them – so much of a threat that even an appalling loss of life such as the World Trade Center attacks is not above being denigrated in an attempt to demonise people such as I.

I’ve said it before and I say it again now. The Biomed community needs to take a long hard look at itself and who its most vocal proponents are. Do you honestly believe that your cause is well served by referring to others as akin to bombers? Or child abusers? or nerds?

Is this something you really think will attract people to your way of thinking?

Is this a position from which you think is substantial enough to build from?

Are these words which you feel serve you well, personally?

115 Responses to “Autism, Respect and the Mercury Militia”

  1. John Best October 31, 2005 at 01:57 #

    You’re all proving my point. If I had more time, I’d explain why your analogies are bad. Nevermind, you just wouldn’t get it. Mr Andrews may want to consider that excessive use of four-letter words does not suggest intelligence. I’m sure he’s proud of his college degree but I don’t see anyone else running around putting BA after their name. Oh well, time for football.

  2. bonni October 31, 2005 at 02:44 #

    You’re all proving my point.

    Yeah, well, probably our brains just don’t work right.

  3. bonni October 31, 2005 at 03:53 #

    Upon reflection (while I went out for a ride to take one of my children to her playgroup), I was thinking about this. I honestly have to admit I was perplexed as to what point we were supposedly proving.

    And then it struck me. The point we’re “proving” is that people can be cruel to those who are different, from the most minor of differences (color of your hair, height, etc.) to the most noticible (such as having cerebral palsy). Well, yeah, the world is full of narrow-minded bigots who are so terrified of anything outside their realm of experience and understanding that they’ll act like jerks to the disabled or just the not-quite-the-same.

    So what?

    It seems that what most of the neurodiversity types are interested in is broadening the awareness of the public, of the education system, of government agencies, etc. and also working with the disabled (in this case, autistics) to help them cope and fit in with society as a whole, the other side of the argument is: Force the different to conform, at all costs.

    Teach them that their broken, that their brains don’t work, that they’re poisoned, that unless they can “be normal” they’re not as good as everyone else, and then, if they can’t be just like everyone else, lock them away where the decent, normal folk of the world won’t have to deal with them (and they won’t have to deal with the world).

    That’s the impression I get.

    Yes, the world is a mean place. It’s mean to everyone, and even meaner when you’re different, because the small-minded bigots of the world who can’t cope with differentness are always hanging around to make sure you know how worthless you are and how being different makes you sub-human.

    Seems to me that the problem isn’t necessarily with the different, but more with the bigots.

  4. bonni October 31, 2005 at 04:01 #

    Apologies for the grammar and typo errors above. I do know the difference between “their” and “they’re”, among other things. I just feel pretty passionately about the subject of forcing conformity, and didn’t check before I clicked the submit button.

    Oh, well. There are worse things to leave in a weblog comment than a couple of homophonic errors and some typos, eh?

  5. John Best October 31, 2005 at 04:21 #

    One thing is obvious here. The people opposing what I say aren’t autistic. They may be just plain stupid or uneducated but, they are not autistic. They can read, write, comprehend some things, argue, albeit inanely and I’ll presume they can toilet themselves and cross the street safely. They have no business including themselves as disabled in the same class as children who can’t do these things.
    The obvious solution would be for you to come up with another name for yourselves and disassociate yourselves from anything to do with severely disabled kids. That Andrews guy sounds like he really needs some special care but the rest don’t sound disabled to me.

  6. Michelle Dawson October 31, 2005 at 04:23 #

    I can hardly wait for the “Right Brain Wrong Brain” blog.

    Some corrections: Dr Lovaas didn’t develop “ABA”. He used it in a novel way. And Dr Lovaas was using ABA or operant conditioning (ABA was first formally described in 1968, and not by Dr Lovaas) to change the behaviour of autistics (and was publishing science about this) before the start of the Feminine Boy Project.

    The UCLA FBP was simultaneous with the early years of the UCLA Young Autism Project whose results were reported in 1987 (this study spans 1970-1984). Accurate information about ABA, autism, and the FBP is here http://www.sentex.net/~nexus23/naa_aba.html .

    I have no idea why this piece of history is so often distorted. I’ve also seen it reported as “fact” that electric shock was used in the FBP. This is false. Those kids were hit, not shocked.

  7. bonni October 31, 2005 at 05:20 #

    I’m neither uneducated, nor am I stupid, thanks. As for disability, yes, I am, thanks. What my particular disabilities are is nobody’s business by my own and are mine to cope with, but I do have them (several undiagnosed until I was an adult), AND I have an autistic child.

    So anyone who disagrees is stupid and uneducated. Wow, what a charming guy. Really sways my opinion.

  8. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 06:22 #

    JBJr: “Mr Andrews may want to consider that excessive use of four-letter words does not suggest intelligence.”

    Did I ever suggest that it did? Maybe it suggests that I just don’t like your attitudes towards people who don’t think your way… ever think of that?

    annonannie: “Mr. Andrews, I urge you look back at your posts as I think they have devolved and neither serve you nor your position (of which I am quite sympathetic and interested) – why stoop to Mr. Best’s level?”

    May have a point.

    JBJr: “That Andrews guy sounds like he really needs some special care but the rest don’t sound disabled to me.”

    Nah, but you do.

    BJ: “Our difference creates an average.Let’s live with it.”

    It creates a very *rarely observed* average… I did a calculation, based on expected frequencies of occurence (psychometrically obtained data), and the number of indices upon which my test battery measures various aspects of people’s similarities and differences in functioning. On 93 indices overall (WASI- 4+2+1; DTVP-A- 6+2+1; NEO-FFI- 5; K-FAST- 2+1), and at a 68% chance of finding scores within normal limits (between -1sd and +1sd), the chances of finding a normal person (at least, from a psychometric perspective) are low: about 1 in 10,500.

    JBJr: “The people opposing what I say aren’t autistic.”

    You’d be surprised how many actually are. If you could be bothered to get to know. Lenny tried this tack himself. Failed miserably. So have you.

    JBJr: “They may be just plain stupid or uneducated but…”

    One reason for having my qualifications tagged on… so that presumptive nasties like you know it’s there…

    bonni: “So anyone who disagrees is stupid and uneducated. Wow, what a charming guy. Really sways my opinion.”

    Isn’t he just? He calls me (essentially) fucked up, but isn’t he just projecting that? I just happen to disagree with him, and so my brain doesn’t work properly? I just happen to be autistic, so I can’t possibly have an opinion worth having?

    JBJr: “One thing is obvious here.”

    Yes. JBJr talks bollocks, and will never cease to until he dies. Can’t string anything logical together, and always has to insult people or browbeat them into believing his version of things… and when they refuse to… he can’t agree to disagree… he has to resort to calling them child-abusers. Like bonni says… “Wow, what a charming guy.”

    I’m glad I’m not him.

  9. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 06:25 #

    JBJr: “They are not showing anyone the truth because they do not display their remarks to which the quoted person responded”

    Precisely your tactic on AutAdvo. Archived posts prove clearly. You always left out the pertinent remarks to which you were supposedly responding.

  10. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 06:31 #

    Kevin L: “Do you believe, as John Best does, that its better to be dead than autistic?”

    I’m far happier being autistic than I would be as JBJr!

  11. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 06:34 #

    JBJr: “They can read, write, comprehend some things, argue, albeit inanely and I’ll presume they can toilet themselves and cross the street safely”

    And the diagnostic criteria include these? Go back to DSM and check, JBJr… before being an idiot.

  12. bonni October 31, 2005 at 07:01 #

    I just happen to be autistic, so I can’t possibly have an opinion worth having?

    Clearly you’re different, and we all know that Different Is Bad. Now get back in the closet, and stop bothering the Normals! ;-P

  13. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 07:04 #

    bonni: “Now get back in the closet, and stop bothering the Normals! ;-P”

    LoL….

    The chances of finding a normal person (at least, from a psychometric perspective) are low: about 1 in 10,500.

    I’ve yet to meet one 😉

    Can’t go back in the closet tho…. could go to the water-closet and do a JBJunior, tho 😉 I’m a bit coeliac, meself 😉

  14. David N. Andrews BA-status, PgCertSpEd (pending) October 31, 2005 at 07:08 #

    bonni: “Teach them that their broken, that their brains don’t work, that they’re poisoned, that unless they can “be normal” they’re not as good as everyone else, and then, if they can’t be just like everyone else, lock them away where the decent, normal folk of the world won’t have to deal with them (and they won’t have to deal with the world).

    That’s the impression I get.”

    I missed that earlier. But that’s exactly the impression I get too. And it’s not an impression that JBJr denies trying to make. Very insidious way of working, I think. Very bigotted and nasty. Denigrating and disparaging.

    I’d hate to be JBJr’s kid… the cost to self-esteem there must be enormous.

  15. Kev October 31, 2005 at 07:25 #

    Intriguing.

    I didn’t even mention his name and yet JBJr knew exactly who I was refering to as the person continually lowering the tone.

    Also intriguing is JBJr’s offer, obviously part way through this thread, to resign his GR membership. That tells us all that even though he is unable to contain his gob he is aware of the political damage he is doing to GR.

    Its also amusing to note how easy it is to provoke the typical response from JBJr – say something that even deviates one iota from mercury=autism and there he is – good doggy JBJr! Sit up! Beg! We could, if we so desired, have endless fun just poking him with a stick occassionaly and watch him witter on endlessley (a bit like those toys with strings in their back that you pull to get to talk). I’m betting I could keep getting bilious responses from him till at least Xmas.

    But…all good things come to an end. I’ve learnt a lot about the nature of GR and JB and surprisngly to me – it aint all bad, there is obvious common ground. If this thread has achieved nothing else, its acheived that.

    I’ve also learnt that there is still differences between US and UK phraseology (‘tail between your legs’ isn’t a comment on manhood JB, its a reference to a dog that is disappointed) and that there is still, even now, a puzzling gap between respect and wanting to do the right thing.

    And on that note I’m going to close this thread :o)

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