Rendering unto

9 Jun

I’ve taken a deliberate and purposeful step away from everything autism related (online anyway) this last week and to be perfectly frank, its been a breath of fresh air. I’ve done some hard thinking and some hard talking/listening to family and friends and tried very hard to firstly compartmentalise what exactly I found so upsetting and offensive about the events of last weekend.

First, I was dismayed to find someone I considered an ally calling me names. It doesn’t matter under what guise it was – literary allusion or not – if you call people names they’re never going to find it easy to talk _with_ you.

I still haven’t been able to resolve the sheer mindless immaturity of this act and so I simply won’t try and rationalise it any more. It happened, it can’t be undone.

Secondly, I was even more dismayed – and deeply hurt – to hear someone I considered an ally accusing me personally and people I like of doing ‘things’. These things were never quantified and were never illustrated. I (we) were just supposed to accept they had happened.

I don’t operate like that. I do plenty of accusing on this blog. But I _back it up_ – and if I can’t back it up then I retract it. That’s how the world works. Nobody – under any circumstances – should be free to accuse anyone else of anything unless they can provide some evidence. Without that, we descend into anarchy.

Even more hurtful was to hear friends of the accuser wandering from blog to blog essentially saying ‘So? So you were accused of something – what’s the big deal?’ The big deal is integrity, respect, truthfulness. These things matter. Or at least, they matter to me.

A sideshoot of that issue was the same people saying ‘yeah, but underneath all the bluster, he has a point’. I cannot possibly convey to you how unbelievably frustrating it is to try and explain time after time that the underlying point – nothing about us without us – was never in question. Nobody thought otherwise. I was asking for the _specific examples_ of the allegations made against me and the Hub membership at large. Hijacking, usurping agendas, taking over.

This _is_ a big deal. To me, as someone who has spent the last 3 years invested in listening to autistic people regarding the autistic experience and trying to _support_ the agenda in one of the only ways I know how – technically – to hear that dismissed – _without any foundation whatsoever_ was like a kick in the teeth. That it should come from people that I deeply respected and who’s opinions I valued was the worst thing of all.

Thirdly, the vaccine connection. If anybody truly thinks that the vaccine/autism bullshit is anything other than the most important issue facing autism and autistic people right now then they need to pull their heads out the sand.

Right now, this week, a trial will begin that will effectively determine whether vaccines can legally cause autism. The outcome can potentially change the way the whole world views autism. The quacks lose and we can scale back a bit and move focus elsewhere. The quacks win….well, what happens then? Who knows, because as far as autism goes, all bets will be off.

Are you autistic? You’ll be considered first and foremost vaccine-injured. If you refuse treatment – what then? Will your ‘diversity’ be respected? Or will you be the new schizophrenics? Condemned to be held down and chelated much as schizophrenics were once held down and given ECT. Will you still be eligible for the help you get? Housing? Social? Monetary benefits…do you think you’ll still get them?

How about those autistic people who work? Think you’ll still have your employment rights? Would you be a ‘better’ employee for the company as autistic or chelated?

Are you the parent of an autistic child? Children who’s parents refuse treatment can be legally forced to surrender their paternal rights so doctors can apply that treatment. At the moment chelation for autism is seen as quackery. If this legal case goes through – who knows?

This happening right now.

Which brings me on to the concept of leadership. If autistic people alone want to not only lead and set the agenda but also decide what is acceptable for others to blog/talk about then they need to be exceptional leaders.

Leaders inspire, support their ‘troops’ and lead by example. They take responsibility. I haven’t seen much of that from certain autistic people of late. Indeed, when a leader is short sighted enough to think that its OK to ignore the vaccine issue then we are all – leaders and followers – in trouble.

If ever the autistic community needed leadership and vision in the face of a real, tangible threat then it is right now. This week.

I wish I could share with this (so far imaginary) leadership the emails I have received from parents this last week. If I could then I would tell my leaders that a good sized portion of their troops were now disillusioned and feel like they have been sold a bill of goods regarding neurodiversity. I feel a bit like that myself. Here is a quote from a parent (I was given permission to use this) who also happens to be ‘ND’:

All our voices are important. Even that of those who are less tolerant, as long as they can back up their thoughts and feelings with solid foundations, not walls that only bounce back reverberations of the original thought. I am afraid that some of our fellow ND associates have completely forgotten what the D stands for, and that truly bothers me.

It bothers me too. As someone else who is not NT but not autistic (e.g. – neurodiverse) I also think there are some people in the autism community who have forgotten that autism is a subset of neurodiversity, not its definition. They also seem to think that – as my email correspondent points out – ‘diversity’ = ‘autism only’. The people who originally taught me about awareness, disability rights etc continue to teach me but this time the lessons are not so pleasant and smack more of exclusion and not belonging to a ‘boys club’ than they do of diversity.

I got into this originally due to my daughter and that remains the overriding reason I participate. The idea of neurodiversity – that people with _a variety_ of differences – appealed to me instantly and still does. I don’t want to lead that community but I do want to participate – have my say – on how its agenda is set. I urge every parent of every autistic child, physically ND or not, to have their say too. I would temper that with reminding you that neurodiversity does not equate to autism and that as far as autism goes, you should have your say but never exclude autistic people – and be prepared for the weight of opinion to go against yours.

The saddest thing about all this is that I never thought that reminder was necessary based on our collective behaviour. The trap I fell into – until shown the nature of the trap by my big sister – is that not all autistic people do not want to hear your voices. The majority appreciate that you have something to add but they also know that they are (to borrow Kassiane’s phrase) QbE – Qualified by Experience – and that experience carries a large amount of weight.

In my next post I want to talk more about neurodiversity and how it encompasses – as oppose to ‘is defined by’ – autism. I’ll try and talk some more about my own ND neurology and why I am uneasy about how that neurology is viewed by some in the autistic community.

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43 Responses to “Rendering unto”

  1. Ms. Clark June 9, 2007 at 09:28 #

    Hi there! 😀 Glad to see you back blogging. Now I better go to sleep.

  2. Estee June 9, 2007 at 11:10 #

    Glad you’re back. I’m going through the same process you have been.

  3. Jennifer June 9, 2007 at 11:45 #

    I’m very glad to see you back too Kev. Take care, and know that your efforts are truly appreciated by many. Personally, I like the definition of neurodiversity as “Honoring the variety of human wiring”.

  4. bethduckie June 9, 2007 at 12:08 #

    Really, really pleased to see you back Kev.

  5. Bonnie Ventura June 9, 2007 at 12:23 #

    Welcome back Kev. 🙂

  6. Club 166 June 9, 2007 at 12:38 #

    Welcome back, Kev.

    I started a post twice this week which was entitled “Why Mercury Matters”. After several attempts, I didn’t get it as right as you did above, so abandoned it.

    Thanks for saying a lot of things that need saying. I’m glad that you’re back.

  7. kristina June 9, 2007 at 14:00 #

    It’s been a much dimmer picture while you weren’t blogging.

  8. Joel Smith June 9, 2007 at 14:20 #

    Kev, I am glad you’re back too.

    I do disagree on the mecury issue – I think the issue isn’t what causes autism, but what is done with autistics. Either way this case goes, that’s still an issue. I’m not willing to say that I’ll lose all rights if the mercurians win (which could happen – as sometimes, courts don’t always see the truth), nor do I think I need to. I’m seeing laws passed in the US right now to approve treatment of ABA, at taxpayer expense, for all ages of autistics – which is a very real threat indeed, since I don’t see chelation being funded even if the mercurians win their lawsuit, since even if autism is caused by vaccines, chelation lacks evidence of effectiveness in treating exposures that happened years ago. Yet, these ABA laws are passing without even a wimper from the autistic community – we’re too focused on mercury. The vaccine people are worth fighting, but at the same time, it’s not the only or the biggest issue in autism advocacy. I admire the sciencetific knowledge shown by those who are arguing this, and am glad people are doing it – but I do wish some other things got that much attention too. I’m not willing to say that people should stop talking about mercury, but I do believe we need people to focus just as strongly on some of the other issues that affect autistic community (things like ABA, use of restraint by educational staff, drugs being approved for use to treat autism, etc).

    My disclaimer: I’m not talking about the Hub in any way, but rather the whole autism world.

    I’ve written about other issues raised in this elsewhere.

    Once again, I’m glad you’re back. I hope I’m not the second person you are talking about.

  9. Agrippina Minor June 9, 2007 at 14:53 #

    1. Thank *** you’re back.

    2. Your understanding of the dynamics of the exchange that prompted you to sign off is sound. If you want to be amused, Google “Postcolonialism” 🙂

    3. You’re doing a fantastic job etc. etc. and so on.

  10. David N. Andrews M. Ed. (Distinction) June 9, 2007 at 15:14 #

    Must admit, I was worried by the whole kerfuffle… was concerned that the whole thing would collapse.

    Glad you’re not gone anymore. Welcome back to the blogosphere.

  11. Vicky June 9, 2007 at 15:22 #

    Looks like you are constructing a fear mongering campaign to heap more insults on to Larry.

    In anycase a more realistic view of the anti vax trial is warranted here.
    The likely hood of the anti vax suit winning is very very slim.
    I wouldn’t be suprised if it is totally dismissed

    V.

  12. Do'C June 9, 2007 at 15:27 #

    Kev, I appreciate you’re points on why mercury matters. I’d like to add that it may go beyond that. In some areas of the U.S. the medicalization of autism continues (as evidenced by strong pushes for insurance coverage guarantees). This is not to say that appropriate medical support is not needed, but the short sightedness of some of this approach may open the door wide for quackery and other anti-autistic activity.

  13. Steve D June 9, 2007 at 15:38 #

    Hi, Kev. Nice post. Welcome back.

  14. Kev June 9, 2007 at 15:43 #

    Vicky, feel free to expand on your point that I am conducting a fear mongering campaign. However, if you can, just for fun, try using evidence other than just more baseless assertion.

    Your assessment of the vaccine trial is naive in the extreme. You might want to read up on it before commenting further.

  15. Dawn June 9, 2007 at 15:47 #

    Welcome back, Kev. I am glad to see you back.

  16. Vicky June 9, 2007 at 16:17 #

    Kev,

    You will have to excuse my naivette.
    and my bad spelling if it appears 🙂

    I admit I am playing catch up in the base knowledge… and I had to ask my autistic son how to spell knowledge>>>
    Never the less “lets try and leave personalitys” out of the arena and focus on the “principles”

    I admit that I have recently become aware that the “Mind institute” has someone in charge who is perpetrating some of these quack cures such as the hyperbaric oxygen stuff and other things.

    The “Mind institute” along with many parent organizations who initially ( another word I can’t spell) which makes commication difficult in this medium for me) sorry got side tracked…
    Ok..

    Yes the opposition to put it into perspective are gaining ground and are backed by a incrediable amount of money have already made significant gains in this fight…
    and so money talks to a certain degree..
    Then there is the science…
    Hopefully that will Prevail in the end.

    I think there is enough scientific evidence to refute the mercury claims,,
    What I don’t know is on what grounds the claim was made,,, a overall blanket assertion that the vaccines caused autism? Or that thimerisol caused autism?
    Perhaps you could enlighten me?
    V.

  17. Sarah June 9, 2007 at 16:45 #

    I have been reading the proceedings here: http://www.uscfc.uscourts.gov/OSM/AutismDocket.htm
    United States Court of Federal Claims

    with great interest and focus-the Special Masters instructed the PSC (the bad guys) to produce three test case from the 4,800 omnibus cases. The PSC has failed to do so and has only produced one case. The details of this one are not public yet but the Special Masters say that the documentation of that one is not typical. The Special Masters have decided that if two more test cases are not produced that the omnibus proceeding will not continue and those 4,800 + cases will proceed individually in a different trial proceeding.

    The Special Masters have reached the end of their tolerance for time wasting and have a deadline for the PSC to produce. The PSC wanted the three case test and now cannot agree or find two more test cases! It was their idea!

    The Special Masters have not decided if the four expert witnesses that the PSC want will be allowed to testify in the actual proceeding. If two of those four are the Geier’s then I rather doubt that they will meet the Duabert standard and the PSC could jolly well end up with few or no experts.

    The chess player in me likes the strategy, but my human instinct says the stakes are too high.

    Love your blog, BTW.

  18. notmercury June 9, 2007 at 17:38 #

    Hi Kev,
    Thanks for sharing all that’s been going on in your mind for the last week. You’ve presented some points I hadn’t considered.

    I’ve always appreciated your well thought out writing on all that matters to the entire autism community. I hope you aren’t too discouraged and will continue blogging along with all of your other contributions.

  19. Ms. Clark June 9, 2007 at 17:46 #

    “since I don’t see chelation being funded even if the mercurians win their lawsuit”

    Joel, right now the DAN! gang are billing insurance companies for chelation, and also billing various state ‘Medicaid” funding for chelation. Much of it is paid out of pocket, but there’s a dad here in California who has the state paying for, not only chelation, but the “Lupron protocol” per Geier’s prescription.

    All the quacks do is code the kid as being “heavy metal poisoned,” and the insurance companies cough up the dough. A dad explained this on EoHarm in the beginning of that group, he wrote: “Badstreet uses this code: #3847575” for metal poisoning, and it’s a slam dunk after that.

    The same thing could be done if autism becomes “a misdiagnosis for Lyme disease.”

    ABA is horrible, in my view. I have said as many nasty things about Lovaas as I have about Badstreet (if you count the nasty things and divide by the number of posts devoted to Badstreet compared to Lovaas). But as life altering (to the bad) as ABA is, it’s less likely to kill a kid that leaving him unvaxed, and/or exposing him to stem cell injections, chelation, HBOT, etc.

    Some of the “treatments” could lead to the child getting cancer, though that’s speculative. Some of the treatments are more likely to set the kid off on a lifetime of seizures, that could shorten his lifetime.

    I really hope the Special Masters send the parents and their greedy lawyers packing, but I’m afraid of what will happen to the kids with the next round of quack hype-otheses, too.

    IVIG could kill a kid, and it’s related to the “autism in autoimmune disease” and then there’s all the torture the kids are put through to make them swallow tons of pills and icky tasting juice and so forth. It can be traumatic. The parents describe some of the traumatic scenes where they are trying to get the “life saving” vitamin pills into the kid who is screaming and trying to avoid taking them (wrestling ensues).

    I’m not say, “give up on fighting the illusion that ABA is a wonder cure for autism.” I’m saying that I need to do what I need to do.

    If a huge number of autistic adults start arguing against the funding of ABA I would not complain one bit, but I have to decide what is a priority for me, and for my kid, too. I also can only do what I can do.

    In research they say, “research is MEsearch” because so many researchers go into studying their own personal issues.

    Well, the same could be said for advocacy. It’s natural and right for people to advocate for the stuff they understand best, and that’s going to be the stuff that impact their own life the most. I can’t get Larry to advocate for something that parents advocate for because Larry’s not a parent. And I can’t get someone else to advocate for stuff about augmentive communication, because that person has never needed it himself. Everyone has a focus, is what I mean, and no one can be an expert in everything, nor should they be required to give up what they are passionate about in order to be passionate about what someone else is passionate about.

    The best thing one can do is to blog more about the details of this ABA provision law thing. I for one didn’t know about it. Nor should I be expected to just know about it, since I’m so in deep with fighting potentially killer quackery.

    AB once told me and Jerry Newport that autistic advocates shouldn’t criticize what each the focus of another person’s advocacy (Jerry and I were sniping at each other basically). I think that’s still a good idea. I also think that we ought to think twice before criticizing what a putatively NT parent is focused on.

  20. Ballastexistenz June 9, 2007 at 17:47 #

    I’m glad you’re back, even if we don’t see eye to eye on a lot of things (although which things might surprise you).

  21. laurentius-rex June 9, 2007 at 17:47 #

    Well I am too busy at the moment sorting my flat out, curious thing about OCD you can get as obsessive in clearing stuff out as you can about collecting, must be done, surveyors coming, don’t want public health doing it for me do I?!

    Anyway the threat of enforced treatment in the UK is not from the mercury brigade it is from the Government in the form of the mental health bill,http://news.independent.co.uk/uk/legal/article2449983.ece for which Autism is a mental disorder as much as Schizophrenia is, no exceptions – it will make it easier to compulsorily detain people, and drug them, indeed to force a med regime, whether you are in a mental ward or at home.

    Even if I weren’t Autistic they would still get me anyway, indeed if you read the first paragraph you can see the sort of scenario that would lead to it.

    Now surely opposing the mental health bill is something for all neurodiverse people to campaign together for?

  22. Brian Deer June 9, 2007 at 19:20 #

    Although it’s certainly true that vaccines are not the pivotal issue in autism, and it’s a shame that they draw so much attention, they are the current news, and hence bound to be disproportionately discussed.

    I think the Cedillo case is bound to fail, since ultimately, it turns on Wakefield and his MV pals, none of whom are being called by the claimants.

    Here’s the most topical development on the topic:

    http://briandeer.com/wakefield/keith-oleary.doc

  23. David N. Andrews M. Ed. (Distinction) June 9, 2007 at 19:51 #

    “Now surely opposing the mental health bill is something for all neurodiverse people to campaign together for?”

    Yes. It is.

    But so is this stuff regarding the mercury issue. Although – as Brian Deer says – the coverage for these things is quite disproportional, the two issues are still very important things to put a stop to. I don’t think that either should be dropped in favour of the other; both need to be driven against.

  24. laurentius-rex June 9, 2007 at 20:17 #

    Well besides chelation, there are a lot more cures being touted, there is Levinson and his inner ear theary, I met a guy at a conference who declared he used to have Aspergers but was cured by Dr Levinson, I declined to converse with him any more after that, but it was quite clear from his subsequent reactions that he was not cured at all.

    What worries me though is Wynford Dore, and he is litigious, a millionaire of course, from my home town who is claiming that his bean bag whatever not only cures dyslexia (which does not exist according to professor Eliot of Durham University but that is another issue) but it can cure ADHD and AS. It is costs a bomb as well.

    This guy has money and lawyers and is probably reading this :(, and then did holding therapy ever go away either? Chelation is not the only therapy that has killed.

    But never mind all of that, mainstream medicine, yes Big Pharma, is ready with the risperidone, and never mind what it might do to the brain, the side effect of putting weight on is life shortening.

  25. HN June 9, 2007 at 20:21 #

    There is another category of people who are concerned with the “vaccines cause autism” ploy: those of us with medically fragile children who are vulnerable to the actual diseases.

    For example the two boys described in this article:
    http://www.timesonline.co.uk/tol/news/uk/article1055533.ece

    My son had infantile seizures which precluded him from being vaccinated against pertussis at the time our county was having a pertussis epidemic. It was then I learned I had to be very very careful who he came into contact with as an infant (and where I first encountered the ani-vaxers, long before anyone mentioned autism, and a full 10 years before Wakefield’s lawyer-paid Lancet paper).

    Later as he got older he had another seizure while in the throes of a gastrointestinal ailment that may or may not have been a rotavirus that there is NOW a vaccine for.

    Now that he has a very serious genetic heart condition… he is on the first wave of those who get an influenza vaccine.

    I do not want the Mercury Militia to succeed in making vaccines more expensive, less available and in the end eroding herd immunity.

  26. Anne June 9, 2007 at 20:50 #

    Brian, that was interesting. Here’s another piece of the Cedillo case, in which Special Master Hastings recently ordered the Cedillos to turn over all their home videos.

  27. Kev June 9, 2007 at 21:44 #

    I hope HN’s comment has illustrated one of the things I was talking about in my post here. Responsibility. I believe that – as Brian says – vaccines is not the be all and end all of autism. The campaigns that I see and support and have tried to offer input in in my particular technical strength (Autism Speaks video/the JRC/etc) are not to do with vaccines.

    However, right here, right now, this issue is live. It is at the top of peoples minds and I’m afraid that despite the science there is an equal chance that the quacks can and will win. Don’t forget that we exist in a world where creationism can be taught as a competitive theory to evolution in a science class.

    Don’t write this off, don’t count your chickens.

    HN’s comment touches on responsibility. The autis_tic_ community have assumed this responsibility by default. If you do not stand, if you refuse to even acknowledge the threat or take it seriously then alongside the sudden redefinition of what autism is and what causes it, vaccination rates will tumble. People will die as a result.

    The issue to me is crystal clear. No other issue in the area (that I know of) has the same potential that this does to _fundamentally alter in the public mind_ how autism is caused, perceived and treated. Please. Please take this seriously.

  28. Joel Smith June 9, 2007 at 22:00 #

    I do take it seriously, but whether people think this causes autism or refrigerator mothers cause autism (I was talking to an Israeli friend today – the top researcher for Autism in Israel promotes the refrigerator mother theory), autistics will be abused, continue to be abused, and face unwanted therapies.

    Sure, this is a popular issue right now. Most important? I’m not so sure. I’d say the laws Larry and myself have mentioned are pretty darn important too, even though the press ignores them. In the US, what will fundamentally change the way autism is seen is NOT whether or not it’s caused by vaccines – it’s whether the “treatment” will shift from the educational system to the medical establishment. This shift is taking place NOW, just as the vaccine trial is taking place now.

    But that said, I do not believe anything posted on the internet between now and the end of the trial is likely to sway the court – but I’d be interested to hear if someone disagrees with me on that. If it won’t sway the court, and the court’s decision is what is important, then what is the reason it is so important to post about this?

    If the only opposition group you read is EOH, then, yes, this looks like THE major issue. But there are others out there, just as dangerous to autistics. What about the Autism Speaks stuff? Sure, they’re more “scientifically” correct than the mercurians, but ethically they are just as bankrupt – and they got 50 times the news coverage last week in the US that the vaccine issue got (a major US sports event was promoted by them). I don’t think a world with a vaccine victory but without a victory over Autism Speaks is a world I want to live in.

    Yes, I think the vaccine issue is important. Yes, I think it has broader implications than just to autistic people. But, NO, I don’t think it’s the most important issue for autistic people right now.

    I hope that things like forced treatment are not ignored because the vaccine issue is seen as a bigger issue. Kev, to use your wording, PLEASE, PLEASE take this seriously.

    Once again, talk about vaccines if you want. But I hope people will consider also looking into some of the issues that might not be getting quite as much attention in the media. We stand to lose a lot if we simply worry about whatever is big on the nightly news.

  29. Phil Schwarz June 9, 2007 at 22:01 #

    Kev — glad to see you back online.

    Never let perceived attacks derail you from what you are rightfully invested in, even if the perceived attacks come from those you thought would never make them.

    The technical ways you have helped the movement have been and continue to be immensely valuable. They rise — should rise — above any vicissitudes that might happen on a personal level.

    I can say the same for other nonautistic allies who bring scientific, marketing, investigative, legal, and financial assets to bear in support of the movement: they are all immensely valuable.

    As we sit back and watch the curebie “big dogs” catfight (hey, I can mix metaphors with the best :-P), let’s take a moment to recognize that our movement has the resiliency to move beyond the hurtful-on-a-personal-level and seriously, honestly, and openly discuss and reason through the big questions about agenda and direction and application of resources and attention that the movement faces.

    May your technical contributions — the Hub and all the others — continue to help provide the connectivity and communication that allows that open and above-the-personal-level process to take place.

    — Phil

  30. laurentius-rex June 9, 2007 at 22:31 #

    Indeed it is forgotten that autism is not a US/UK thing only, and I don’t think the mercury message is going anywhere in France and Italy and all the other countries where the psychodynamic model still holds sway in the establishment.

    Lets not forget that the greatest harm to us all, autistics and parents alike was done by Bettelheim. though personally I think Lovaas is not far behind.

    As for what is killing autistics, well the police for one, and instititutions, never mind the Nazi’s just how many developmentally disabled people have not grown to maturity in the past simply because nobody bothered with simple medical care when it was needed.

    Lets not leave suicide out of this either, and why might we commit suicide? It’s not autism squeeks or mercurian wierdness it is much closer to home, it is the people around us, who are there too much or not there when they are needed.

  31. Anne June 10, 2007 at 00:24 #

    I agree with what Ms. Clark said. There are so many important issues, and people bring their different interests, skills and experience to bear in dealing with them. Many of these issues – research, education, support services, medical treatment, and even litigation – have in common the fundamental issue of what autism is and what should be “done” about it. Ethics is involved in everything.

    No one person, or group of people, can cover all fronts. Maybe what looks like fragmentation could better be perceived as a division of labor.

  32. isles June 10, 2007 at 02:30 #

    Glad you’re back in the ring. Cheers!

  33. Ms. Clark June 10, 2007 at 04:19 #

    One thing about blogging and so forth about the omnibus hearing is that there are going to be people screaming bloody murder about how they were robbed of their just payment, if the Special Masters decide against them. By keeping the fact current and keeping the informations more accessible to everyone, it will probably lessen the likelihood that some reporter would sympathize with those screaming bloody murder.

    If the case goes for the mercury/MMR parents (hard to imagine, but I would have thought that OJ Simpson would have been found guilty, for some reason) then maybe blogging won’t change much of the outcome. I don’t know how badly hit public health will be, it could be that all the antivaxer harpies will come screaming down on every parent in the English speaking world and tell them ‘SEE!!! SEE!!! WE WERE RIGHT ABOUT AUTISM!!!” (Shades of Sue Em) And then they’ll get traction in convincing people that vaccines cause every problem and bad attitude ever know to man (global warming, war, bed bugs, drug abuse….).

    The vaccines have kept a lid on these nasty, nasty little microbes that are all around us. If folks stopped vaccinating for measles, now, for instance in a few years there would be huge epidemics not unlike the smallpox epidemic that wiped out the South American natives because of the way the natural cycle of these guys works. After all the susceptible people died off, then the hardier ones would deal with outbreaks every few years, taking a small percentage of the population each time.

    After a while, it would become a milder “childhood disease” but retain it’s ability to kill. Smallpox followed the same pattern, after wiping out huge swaths of new populations, eventually it settles into a being a childhood disease (at the cost of many many of the unlucky members of the population). And that’s just measles. Anyone want a nice case of diptheria for their child? Anyone want to sign up for their kid to roll the dice with polio? It can be a totally harmless little disease in some people.

    What if that happened and people began to blame autistics and their parents for the fallout? That’s pretty sci-fi. I hope we don’t get there, but it is pretty scary how fragile the trust in vaccines is considering how important vaccines are for everyone’s ability to keep living.

  34. Kev June 10, 2007 at 06:42 #

    America leads, the rest follow at varying speeds. Bettleheim held sway in the US for awhile and others hold on to that idiocy. They won’t forever. Joel – the vaccine issue _is_ about abuse of autistic people. However it is also wider than that.

    I am not asking for everyone to suddenly start talking/blogging about vaccines or science. What I doing is asking you (not you personally Joel, I mean ‘you’ in the wider sense of the word) to realise that talking/blogging about the autism/vaccine issue is not misrepresenting either neurodiversity nor autism acceptance. It is merely one facet of it. I am suggesting that an issue that has the utmost significance needs to be discussed and those who do discuss it should not be accused of misrepresenting neurodiversity to others.

  35. Kev June 10, 2007 at 06:47 #

    _”let’s take a moment to recognize that our movement has the resiliency to move beyond the hurtful-on-a-personal-level and seriously, honestly, and openly discuss and reason through the big questions about agenda and direction and application of resources and attention that the movement face”_

    Uh-huh, we should do that. However, we should also realise that a group that has allies (e.g. two groups that form an alliance) are operating on a two way street. We should recognise its not good enough for people from either of those two groups to stir up a hornets nest without grounds or evidence to do so, especially when we run the risk – as we most definitely have done this time – of alienating possible allies and disenfranchising existing ones.

  36. Joel Smith June 10, 2007 at 13:07 #

    My concern isn’t that vaccines are blogged about – it’s that tons of other stuff isn’t.

    Can anyone show me even one “pro-autistic” blog entry on the new South Carolina law? That’s just one example. I hear things like “WE MUST BLOG ABOUT VACCINES!” Sure, I’d agree. But we don’t feel we must blog about moving autism from educational to medical? That’s a pretty big deal.

    That’s just one example. Maybe it was blogged about somewhere and I just missed it. I hope that’s the case.

    But to say that vaccines are more important. Uh, no. Yes, they are important. But so is medicalization of education – and that has plenty of future effects for autistics, including things like forced treatment and changing the way autistics are viewed.

    I would love to see a bit more “fragmentation” and a bit more issues talked about. We might win vaccines, only to find that we’re medicalized, forced to endure treatments we don’t want, abused, put on starvation diets, etc, yet vaccinated. I think we need to be worried about *that* future just as much as the one where we are not vaccinated or even where we are chelated. I’m trying to avoid that outcome because, over here in the US, it looks a whole lot more likely than “the bad guys” winning in the vaccine court or even vaccination rates declining below current levels.

  37. Kev June 10, 2007 at 15:03 #

    I agree Joel. Personally, I’ve heard nothing about the S Carolina law. The vaccine issue gets plenty of press in the UK but not much else does. Please point me to somewhere I can read about it.

  38. Do'C June 10, 2007 at 15:26 #

    Exactly the reason for my first comment in this thread.

    “The South Carolina autism insurance initiative will require insurance companies in the state to provide medical coverage for persons who are diagnosed with autism spectrum disorder by age eight, with continuing coverage through sixteen years of age for treatments prescribed by a medical doctor. Included is coverage for behavioral therapy up to $50,000 a year.”

    I’m interested in blogging, but don’t see enough source material to work with yet. The quote above is a part of a blurb from Autism Speaks.

    When I read this, I immediately thought of bogus mHBOT.

    Here’s what sparked my concern.

  39. Joel Smith June 10, 2007 at 18:36 #

    S.C. S 20:
    http://www.scstatehouse.net/sess117_2007-2008/bills/20.htm

    It’s a VERY thinly veiled (and successful) attempt to have ABA written into law as a medically necessary treatment.

    The law itself only applies to children, but we’ll see what happens when autistics in South Carolina do not submit to behavioral therapy… Having this law implies that (1) ABA works and (2) it is necessary. It also implies that education of autistic people is a medical issue, not an educational one.

    I note that there was not a single vote of disagreement when the veto override votes were taken – it was a unanamous vote of the legislature. That typically means that the senate and house felt there was absolutely no opposition, probably because there was none – probably not one single autistic person contacted the legislature and made an objection. Part of the reason for that is that autistic people (and our allies) are simply not paying attention to local politics. 😦

  40. Jannalou June 10, 2007 at 23:00 #

    That law is passed?

    Great. *sigh* Gonna have to get some good information out here in Canada, because everyone knows where FEAT is going next, right?

    I still have to finish researching and writing a press release, but I will definitely be looking into this some more.

    I may hate politics, but I’m fine with getting into the political lobbies arena if I have to. I’ll launch a letter-writing campaign and send out press releases. No problem.

    See, my problem is that I don’t read or watch the news and I (as I said) hate politics. I rely on other people to let me know what’s going on out there in the world. I’m more a philosopher, I guess, than a political commentator.

  41. Sarah, Liam and Ryan's Mama June 11, 2007 at 02:35 #

    Kev, welcome back! The medicalization of Autism frightens me as well. Falling firmly in the ND group, I am already treading lightly as a parent in the eyes of some with whom I’m acquainted. We battled my five year old son’s school since they were very carefully “not” pushing us to have him evaluated for ADHD, then very carefully hinting at how he might have more success if we considered medication and wouldn’t relent until we told them we’d handle the situation in a manner we felt appropriate.

    Regarding the vaccination issue, we chose to vaccinate our children because all three were born at 31 weeks gestation, and I felt the risks of not doing so far outweighed the speculative guesses other parents and quacks are throwing to the public.

    Please keep doing what you’re doing. I apppreciate all the information, perspective, varied views and honesty you bring to the blog community.

  42. Lori June 11, 2007 at 23:50 #

    Welcome back Kev 🙂

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