Generation Rescue: Time To Come Clean

10 Sep

Generation Rescue Redefine Autism

JB Handley’s Generation Rescue created quite a stir when they first launched. They went with a simple, clear, easy to understand message. The first part of that message was:

So, autism is a misdiagnosis for mercury poisoning as per Brad Handley in February 2005. You heard the guy – if you line up one hundred symptoms of mercury poisoning and one hundred symptoms of autism they are exactly the same.

Which is why its odd to find a post on the Evidence of Harm Yahoo Group from one Bradford Handley dated August 30th 2006 which reads1:

Guys, it ain’t ONLY the mercury.

So in Feb 2005, autism is mercury poisoning. By Aug 2006 its not. Now, its apparently more. Lets not forget that Brad is also quoted as ‘refusing to admit the possibility he might be wrong2.

What else can Brad inform the viewing public about autism?

So at least now we know where John Best Jr gets his ridiculous ideas from. But even that poster boy for truly spectacular idiocy can have his idiocy exposed3 as I did when I got John to admit that:

Your 19th century autistics had genetic autism not MP.

True, he couldn’t see how this invalidated his belief that autism didn’t exist in the 19th Century (apparently ‘genetic autism’ isn’t autism – I know, I know, try not to laugh) but wow, Brad took it even further than John. Going on national TV and now internationally on the Web to reveal that he’s _more dogmatic and less rational than John Best Junior_ ! Something I have to admit, I thought was an impossibility.

Is there anything else Brad can tell us about the nature of autism?

All are poisoned. So the kids who have Rett seem to have flown past the end of Brad’s nose when he wasn’t looking. Same goes for the kids who’s mothers caught wild strain Rubella4 – just….never made Brad’s list.

Isn’t it reassuring that Brad and Generation Rescue are so informed and factual about autism? Can you imagine how it would be if we couldn’t trust him on an even _more _ important point such as treatment for example?

Generation Rescue and JB Handley’s Issues With Time

Notably, how they seem to be running out if it.

This interview was broadcast in Feb 2005.

We can tell two things from that. First we can tell that Brad says chelation will work in one to two years. Secondly, we can tell that Jamie Handley started chelation in September 2004. Or to put it another way, exactly two years ago.

And how sure is Brad of this ‘one to two’ years thing?

Wow – so maybe not even two years – ‘probably less’. And what should the ‘end result’ be? What should we expect?

100% recovered. Neurotypical. No different than their peer group.

Does anybody else think that, seeing as Jamie has been chelated for two years now, we should’ve seen a neurotypical Jamie Handley emblazoned across every media outlet Brad’s chequebook could open for? That we haven’t tells us something about Generation Rescue and their reliability as good sources of information.

But something else doesn’t ring true here either. Jamie Handley’s list of meds5. This is *daily* by the way.

Before Breakfast
B12 shot
Probiotic
B12 x 2, Xylitol nasal spray 2 sprays
TD-GSH 1/2 ML

With Breakfast:
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule each
FolaPro In Juice 1/4 capsule
Intrinsic B12 in juice 1/4 capsule
Nucleotides in juice 1/4 capsule
EDTA 1 capsule
Horsetail Grass 1 capsule
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
GABA 1 capsule
Liver Support 1 capsule
Ora-Placenta 1/2 capsule
RNA in water, alone 0.5 ML

After Breakfast
BH4 1 tablet, Swiss
CCK, Strep Cocktail, GSE, Caprilyic
DMG 1 tablet

With Lunch:
Super Digestive Enzyme 1 capsule
Ora-Adrenal 1/4 capsule
HHC Multivitamin 1 scoop
B Complex Sprinkle
Citrulline Sprinkle
Niacinimide 1 capsule
Quercitin 1/4 scoop
Sam-e 1 scoop
Cell Food Sam-e, Oxygen 4 drops, 4 drops
Magnesium Citrate 1 capsule
Grapeseed Extract 1 capsule
Vitamin C 1/4 tsp (375 mg)
Sphingolin 1 capsule
Pycnogenol 1 capsule
Fenugreek 1 capsule
RNA in water, alone 5 drops

After Lunch
Vitamin K, Vitamin E, SP, CoQ10, Flax
Mag (1), Zn (1), Molyb (2), SE/1 drop, K
CCK, NADH, ATP, DMG 1 capsule each
Strep Cocktail 1/2 tsp

With Dinner
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule
GABA 2 capsules
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
Carnetine 1 capsule
Gymnema Sylvestre 1 capsule
Curcummin 1 capsule
Vitamin D 2 capsules
EDTA 1 capsule
Riboflavin Sprinkle
Malic Acid 1 capsule
Horsetail Grass 1/2 capsule
Zen 2 capsules
Idebenone 1 capsule
Ambrotose 1 scoop
RNA in water, alone 5 drops

Before Bed
IMF5 1 capsule
Strep Cocktail, Candex, GSE 1/2 tsp & 1 capsule
CCK, Lactoferrin, Caprylic 1 each
Charcoal, Magnesium Citrate
EDTA Suppository

This is what Jamie Handley is given every day. Quite apart from the jaw dropping size of the (daily!) list (a list Brad says: ‘we created it through all of our reading and correspondence with other parents’) is the fact that surely a neurotypical child (as Jamie should now be after undergoing the requisite two years – probably less – of treatment) wouldn’t need such a list. Especially a list that still seems to contain chelators – although interestingly not TD-DMPS I note.

Sources

1: EoH.
2: WWeek.
3: Me.
4: CDC.
5: CK2.

91 Responses to “Generation Rescue: Time To Come Clean”

  1. S.L. September 14, 2006 at 22:43 #

    “Because most people… want their children cured. Most people can recognize that autism isn’t a good thing for their children.”

    If you are going to make these statements, you need to add “my personal belief” everytime you state it. You cannot offer documented proof that this is true, because no such documentation exists.

    “The $5 billion Combatting Autism Act is a not so subtle sign that Americans want to find a cure for autism.”

    You really believe that what our government acts on in Congress or elsewhere is always due to what America is asking for? Perhaps you have never met a lobbyist or have a real understanding of how Washington really works. It’s the elite who run the show & it’s the free lunches that buy the “Acts” that are passed. It’s the elite who are so ticked off that their kid is autistic and that we’re not in the days where we simply throw away the key (dare I bring up the Kennedy family & lobotomies?). The elite is now forced to face the challenges & differences that come with raising an autistic child. These kids interfere with their high-society lifestyle. Trust me please, I grew up around them.

    “Yes, I’m suggesting that autism is bad. Autistic people aren’t bad but the condition of autism is bad just like I would say the condition of…cancer, etc are bad things.”

    Wow–comparing Autism to CANCER?? This may be stating the obvious, but if I had to choose whether my child was going to DIE of cancer or LIVE as an autistic…I choose LIVE! I also think MANY, MANY autistics would argue with you immensely that autism is bad. Again–bad for WHO? The parents or the autistics?????

    “my heart hurts for you and your kids.”
    Hey, something we both agree on. My heart goes out to yours & all the other kids forced to be injected, infused, take suppositories, & swallow a God awful amount of pills each day. My heart breaks for all the children who have died from these so-called cures, for the ones who will die because of them, and for the children who never ‘recover,’ & how their lives will be.

  2. Ms. Clark September 15, 2006 at 00:26 #

    Well, the DAN! docs are prescribing lithium for little kids based on DDI test results. I have some emails from parents lists where they discuss that.

    And you think I’m crazy? Parents are dosing their little autistic kids with lithium based on a stinking misleading piece of paper from a quack lab?? ?? But it’s ok, there are those nice colors to show the parents the way.

  3. Alain September 15, 2006 at 01:48 #

    OK I’m surprised at the list of stuff given to the girl but did it occur to him (Handley) to just test what the super digestive enzymes are doing to the nucleotides and the RNA ?

    Alain

  4. David H September 15, 2006 at 02:05 #

    “Um… well, dystonia and CP (both of which I have worked with when I was in clinical engineering) are different indeed from autism. I would expect different attitude… Hell, I’d be fucked off to go dystonic. I’m not fucked off by being autistic though.”

    I’m extremely happy that you are leading a wonderful life and I’m truly glad that you have so much self-confidence. Clearly you are an extremely high functioning autistic individual. But what about those autistics who are not as high functioning? What about the ones that can’t communicate? Clearly you’re familiar with the DSM IV. Autism can be extremly debilitating. Somehow you seem to be forgetting that.

    “Simply “is” is not a religious statement at all. It is intended to communicate that I don’t ascribe a values judgement (good or bad). In our family life, autism is simply part of it, not a defect, not a blessing.”

    That’s fine. I still don’t understand why you wouldn’t want to cure your son if given the choice. It’s no wonder you all hate JB, DAN and the other people and organizations that are dedicated to curing autistic children. You think those people are unnecessarily trying to cure children when there is nothing to cure. If there’s nothing to cure there isn’t a single treatment worth even the tiniest of risk. Its this illogical notion that I find extremely disturbing.

    HN,

    “1) Where is the science to show that EDTA helps remove atherosclerotic plaque? Find just one actual study that shows it works… and make sure it is indexed at PubMed.”

    “2) What happens when calcium is removed in the blood stream? Think hard about that. If you need help try using Google with the search words ” tariq calcium”.”

    “3) Name a major university hospital that uses EDTA in standard practice for atherosclerosis plaque.”

    For arguments sake lets suppose you’re right on all 3 counts. Does that somehow invalidate the test results analyzed by the lab?

    SL,

    Speaking personally, autism is bad for both me & my son. I know you don’t care about me so lets focus on my son. He is missing out on what the world has to offer. He doesn’t enjoy and comprehend things that children his age do. Maybe I should post the traits described in the DSM IV as people here seem to not be aware of them.

  5. alyric September 15, 2006 at 02:54 #

    Mr Hanford wrote:

    Results: The adjusted odds ratios (AORs) were elevated by 50% in the top quartile of chlorinated solvents and heavy metals [95% confidence intervals (CIs) , 1.1-2.1], but not for aromatic solvents. Adjusting for these three groups simultaneously led to decreased risks for the solvents and increased risk for metals (AORs for metals: fourth quartile = 1.7 ; 95% CI, 1.0-3.0 ; third quartile = 1.95 ; 95% CI, 1.2-3.1) .

    And a very interesting study that is, there should be ,as their conclusion states, more of it. Just one teensy weensy problem. The results are hardly or should I say barely conclusive. An odds ration of 1.1 or 1.2 at best!!!! Gee wow! We should all sue the EPA, which is undoubtedly the next step in the litigation parade, since Big Pharma isn’t panning out so well – see Geier’s humiliating debacle.

    Interesting about this thread, starting with David H – all this shock, horror and general angst about us lurking on EOH type lists and nary a word about the wisdom, the efficacy, the safety of a child downing that laundry list of God alone knows what on a daily basis?

    If Big Pharma has to run clinical trials on treatments BEFORE giving them to adults and children, then where’s the clinical trial information for this lot? Read any package insert. There’s generally a section dealing with the effects of combining two or more medications. Does anyone know of the synergisitic effects of this laissez faire autistic econotherapy? Has anyone checked?

  6. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 05:36 #

    David H: “… *autism* is bad just like I would say the condition of dementia, blindness, deafness, *cancer*, etc are bad things.”

    Okay.

    I am autistic. My dad is now quite ill with cancer. he’s also a little bit on the autistic side of things himself. From what I gather, out of our many conversations since the cancer was diagnosed, he would rather have rid of the cancer. He’s quite happy being him otherwise.

    Comparing autism with cancer is just stupid. There is no intellectual merit. It’s like comparing a human being to a tree… it gives very little useful information, if it gives any at all.

  7. David H September 15, 2006 at 13:51 #

    “Comparing autism with cancer is just stupid. There is no intellectual merit. It’s like comparing a human being to a tree… it gives very little useful information, if it gives any at all.”

    I wasn’t trying to compare autism with cancer. My point was simply that I would prefer my son not be autistic given a choice. Autism is a disability. I wouldn’t want anyone to have any type of disability. I don’t understand how the people here could think otherwise. You yourself said how upset you would be if you had dystonia which as far as I can tell has no impact on brain function. Yet somehow you have no problem with autism. I think it has become an issue of pride for you and you now release your venom on any person or any group that dare try to cure autism.

  8. Joseph September 15, 2006 at 15:26 #

    Clearly you are an extremely high functioning autistic individual.

    I’ve seen that “extremely high functioning” classification a couple times now. Anyone knows what the criteria is?

  9. Joseph September 15, 2006 at 15:32 #

    Speaking personally, autism is bad for both me & my son.

    I see that in a different way. Unless autism is causing your son physical pain, which it doesn’t, then it’s not bad for him. It might be bad for you. It might be bad for society, as constructed. And society might be bad for your son. But strictly speaking, autism is not bad for your son. In fact, many autistic children are totally happy and if that changes it’s usually because of circumstances external to autism.

  10. David H September 15, 2006 at 16:44 #

    “I see that in a different way. Unless autism is causing your son physical pain, which it doesn’t, then it’s not bad for him. It might be bad for you. It might be bad for society, as constructed. And society might be bad for your son. But strictly speaking, autism is not bad for your son. In fact, many autistic children are totally happy and if that changes it’s usually because of circumstances external to autism.”

    So something is only bad if it causes physical pain? Extreme frustration due to an inability to communicate is not bad? We took my son to the aquarium a few weeks ago and he completely missed the experience of enjoying a seal show. I don’t know if he even noticed the show going on. He wasn’t unhappy about the situation but his inability to focus in that setting combined with a keen ability to focus on self stimulatory objects caused him to completely miss out on that experience. This is just one recent example. Things like this happen all of the time and it’s not good. He may not realize and perhaps you don’t realize it but he’s missing out on many things life has to offer.

    And speaking of physical pain, my son definitely experienced this due to numerous food intolerances that I personally believe are more than just a comorbidity.

  11. Ruth September 15, 2006 at 17:15 #

    Autism is a result of the structure of the brain. There is no cure for how your brain is wired. Things that help a person communicate or deal with sensory overload improve the quality of life, but are not a cure. I know people with celiac and I know food intolerance can be debilitating. I wish for improved medical treatment for these conditions. Bauman has done very good work in this area.

    Five years ago my daughter made little eye-contact, was so hyperactive that we could not eat in a restaurant or go to a store. Now she spends half of her school day in the mainstream classroom. We enjoy family outings (with some planning for sensory overload).

    My mom coped with my strange behavior as a child without any labels attached to me. I slept little, spoke little except to make a squeal (my nickname was squeaky). I liked school except for all those kids making noise and interrupting my reading. I eventually learned how to pass for normal, but I will never be like most people. If I was cured of Asperger’s, who would I be?

  12. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 17:33 #

    David H: “I wasn’t trying to compare autism with cancer.”

    It did actually look that was as written.

    David H: “My point was simply that I would prefer my son not be autistic given a choice.”

    I wouldn’t like my daughter to be anyone other than who she is, which includes her being autistic… has to, it pervades who she is.

    David H: “Autism is a disability. I wouldn’t want anyone to have any type of disability. I don’t understand how the people here could think otherwise.”

    Ah, well… as currently constructed by the medical profession, it gets seen that way, but when looking at autism (or indeed anything) as a disability, one has to take into account all possible factors that make it so.

    “You yourself said how upset you would be if you had dystonia which as far as I can tell has no impact on brain function.”

    Actually, dystonia (regarding muscle tone, as opposed to ego-dystonia) would be a problem: it would require a change of my ability state to a state in which it was more difficult to do things.

    David H: “Yet somehow you have no problem with autism.”

    Autism wasn’t something that changed my life! Being autistic is an integral part of who I am, and there’s the difference. To lose my muscle tone to any significant degree and for any significant time would eventually piss me off, sure. It would anyone. Because it would be a new physical state for me, that was not a part of who I am. Huge difference. Dystonia like this would be very much influced by brain function or by other CNS function.

    Of course ego-dystonia – where things are ‘not tonic’, i.e., are ‘out of tune’, with one’s sense of self – would be different; something being ego-dystonic would not be caused by brain function, but it gets its definition from the fact of whatever ego-dystonic thing being something that pisses someone off.

    David H: “I think it has become an issue of pride for you and you now release your venom on any person or any group that dare try to cure autism.”

    Evidently, you have no idea of how wrong you are on that. However, let anyone try to cure me or mine of what is basically who we are, I can promise you a blood bath if need be to stop it happening.

    David H: “He is missing out on what the world has to offer. He doesn’t enjoy and comprehend things that children his age do. Maybe I should post the traits described in the DSM IV as people here seem to not be aware of them.”

    I was basically the same as a child. Totally oblivious to much, and very absorbed in my own thoughts and experiences. And I got to this stage, without a cure. Actually, it was the curative attempts from my childhood that led to the most horrible aspects of my childhood: the medications that basically took away any of the sense of life that inhabited my body, and turned me into no more than a zombie; the constantly being thought of (even now, by my own family in the UK) as being a totally defective person who has to be made to comply with others’ demands (as to what I should be, or who I should be). That’s what destroyed my childhood (and a good part of my adulthood too). Being autistic didn’t: being made to put up with *how other people saw it* did.

    As for the criteria… I’m a psychologist; I make the diagnosis. I know them. One has to bear in mind that the criteria do not take account of what brings about the characteristics… that is for the psychologist to assess for and, with the client/parents/etc, plan educational measures to support development. Autism is basically a matter of extreme developmental difference, and the best way of working is from a psycho-educational perspective (medical ‘treatments’, including the allopathic medical stuff done to me as a child) is, at best, short term, and can lead to further problems. That’s what I got from the literature reviewing I did for my MEd work, anyways.

    David H: “I’m extremely happy that you are leading a wonderful life and I’m truly glad that you have so much self-confidence. Clearly you are an extremely high functioning autistic individual.”

    Hmm… I didn’t start out being what anyone would call ‘high-functioning’, to be honest. My life is anything but wonderful, and my self-confidence is something I have to fight for every day of my existence. Not because of being autistic, but because of what was done to my by others, whose views of who I was and what could be done to me were not exactly that savoury. You maybe should reconsider your prejudged statement there. My chapter in Dinah Murray’s “Coming Out Asperger” (published by Jessica Kingsley) shares some of the details of why I’m still fighting for my self-confidence.

    David H: “Autism can be extremly debilitating. Somehow you seem to be forgetting that.”

    Autism itself isn’t what debilitates… seeing it purely as a biological issue can lead to that notion, sure; but there’s more than biology involved.

    David H: “What about the ones that can’t communicate?”

    You mean like I used to be? Given alternative means, communication can be bolstered quite well. If I can find some examples of this without falling asleep (not that this is a boring topic, but rather that I have spent too much time awake over the past few weeks doing my MEd thesis), I’ll summarise them here at a later date if it’d help you to see what I mean (no, not implying that you’re thick… just that it can be hard to get a lot of things without having concrete examples).

  13. Joseph September 15, 2006 at 17:37 #

    We took my son to the aquarium a few weeks ago and he completely missed the experience of enjoying a seal show.

    I don’t enjoy seal shows either. There are many things people find enjoyable which I don’t. Should everyone enjoy the same things?

    I don’t know if he even noticed the show going on.

    Maybe he did, but that wasn’t obvious. Maybe he didn’t. Maybe he was focused on something that’s more important to him.

  14. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 17:40 #

    Ruth: “Autism is a result of the structure of the brain. There is no cure for how your brain is wired. Things that help a person communicate or deal with sensory overload improve the quality of life, but are not a cure.”

    Actually, there’s more to it than the brain-wiring issue. There’s all sorts of factors in the persn’s socio-physical environment that exert an influence on how someone develops generally (i.e, whether the person is autistic or not; not causal, but maybe contributory, to the behaviour said to characterise the autistic person, as indeed with any other sort of person).

    Lewin: *B*=f(*P*,*E*) – behaviour as a function of the interaction of person factors (bio-physical and mental) and environmental factors (including places, physical conditions, people, social conditions, and so on).

    Sauna time now… have to get my sauna beers!

  15. David H September 15, 2006 at 17:43 #

    “Autism is a result of the structure of the brain. There is no cure for how your brain is wired.”

    But what is the cause of the faulty wiring? And there is a great deal of research into other areas, for example the immune system, showing differences in autistics. Research into autism is only in the early stages. You seem to be speaking as if we have definitive answers.

    If you were cured of Asperger’s I imagine you would still be you minus any social deficiencies, obsessive behaviors or any of the other traits commonly associated with AS.

  16. got2banon September 15, 2006 at 17:52 #

    “If you were cured of Asperger’s I imagine you would still be you minus any social deficiencies, obsessive behaviors or any of the other traits commonly associated with AS.”

    See, this would concern me actually. I’d be afraid I’d lose the precise skills of my profession and become some kind of slacker if that were to happen.

  17. got2banon September 15, 2006 at 18:00 #

    “for example the immune system, showing differences in autistics.”

    As as aside, but perhaps of some small interest, I have a diligent MD who has provided significant help in improving my immune-related issues, to the point that I’ve nearly recovered from some of my more debilitating conditions. That being said, however, my spectrum traits have not been diminished, if anything they’ve increased as I now have more energy to pursue my obsessive interests.

  18. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 18:18 #

    David H: “But what is the cause of the faulty wiring?”

    Nobody has ever yet proved that it’s faulty. Different and faulty mean two different things.

  19. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 18:24 #

    got2baon: “See, this would concern me actually. I’d be afraid I’d lose the precise skills of my profession and become some kind of slacker if that were to happen.”

    Me too.

    My being who I am (including that which is diagnosed as Asperger syndrome now, but that started out as so-called ‘classic autism’) is the reason why I have been getting distinction grades at my MEd studies… the thoroughness with which I approach both the subject matter and the language with which I describe it (making me an ‘excellent practitioner’ – another person’s view)… the pursuit of more knowledge about the issue (making me an ‘excellent researcher’ – again, another’s view, based on the meaning of the grade as given).

    Without whatever it is that makes me autistic, I’d suck at my studies and wouldn’t be half as good a practitioner as I am now.

    It’d be reason to kill myself.

    Really.

    Because I wouldn’t be me anymore.

  20. David H September 15, 2006 at 18:48 #

    “Autism wasn’t something that changed my life! Being autistic is an integral part of who I am, and there’s the difference.”

    So if you are born with a disability or it is acquired very early in life then it is considered an integral part of you but if you acquire it later in life it is bad.

    If you were born blind or deaf would you consider that to be an integral part of you?

    “Evidently, you have no idea of how wrong you are on that. However, let anyone try to cure me or mine of what is basically who we are, I can promise you a blood bath if need be to stop it happening.”

    If you were born blind and could cure it later in life would you promise a blood bath to someone trying to give you sight?

    There is no proof that autism is strictly a genetic disorder and many people today believe there is an environmental component to it. What if this is proven to be true? Would you still feel the same way?

    “Actually, it was the curative attempts from my childhood that led to the most horrible aspects of my childhood: the medications that basically took away any of the sense of life that inhabited my body, and turned me into no more than a zombie;”

    And here is one place where your feelings are shared by GR and the DAN movement in general. Mind altering drugs is absolutely not part of the protocol. Where is your anger and outrage towards the mainstream doctors and parents who routinely prescribe things like ritalin or even worse drugs to children?

    “Autism itself isn’t what debilitates… seeing it purely as a biological issue can lead to that notion, sure; but there’s more than biology involved.”

    You lost me.

    “Given alternative means, communication can be bolstered quite well.”

    Fine. But even with that many autistics are severely limited and not able to be independent. Are you even willing to acknowledge that fact?

  21. David H September 15, 2006 at 18:55 #

    “Maybe he did, but that wasn’t obvious. Maybe he didn’t. Maybe he was focused on something that’s more important to him.”

    You’re right. He was focused on something more important to him. His newest stim is hands & feet. So instead of watching the show he wanted to grab our hands and look at our feet. I love my son but there is nothing positive about that stim/obsession and as a result of it he misses out on more interesting things. I can’t believe you’re actually trying to argue this.

  22. David H September 15, 2006 at 18:57 #

    “See, this would concern me actually. I’d be afraid I’d lose the precise skills of my profession and become some kind of slacker if that were to happen.”

    I don’t agree with you but it’s your life. You should afford parents like me & JB the same respect when making decisions for our children who are too young to make it for themself.

  23. Joseph September 15, 2006 at 19:19 #

    If you were cured of Asperger’s I imagine you would still be you minus any social deficiencies, obsessive behaviors or any of the other traits commonly associated with AS.

    That one area where you miss the point, David. Autism is not just a collection of deficits, as you see it. Cognitive research will probably make this clear in due time. But even with disabilities where the above is the case, some people still are not interested in being cured — to understand why that is, you’d have to get immersed in disability politics.

    To put it another way, if I suddenly turned into an ordinary NT individual, many things I’ve done in my life would no longer be relevant or interesting to me, because NTs are not usually interested in such things. I don’t know that I’d have the skills to do those things, frankly. I would not be me, in essense.

    Another example is this. Suppose Rain Man is completely cured. According to your view, he’d still be a human calculator, except all of his deficits would be gone. I say that is impossible. Autism is a package – the weaknesses are part of the strengths.

    It would be ideal to be able to get rid of the weaknesses and keep the strenghts. But the world doesn’t work like that. Otherwise, we could make everyone perfect in every way.

    FWIW I see nothing wrong in trying to address weaknesses, so long as strengths aren’t neglected or treated as weaknesses.

  24. Ruth September 15, 2006 at 19:48 #

    Having AS is as much part of me as being female. I don’t think I am inferior to a male, although males in general may be better than me at some things. I would rather spend time in the lab than get my nails done or go out to a party. I am not sad that I miss out on other activities-I do the things I value. There were times in my life when being different was hard, but I don’t regret it now.

  25. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 19:55 #

    David H: “So if you are born with a disability or it is acquired very early in life then it is considered an integral part of you but if you acquire it later in life it is bad.”

    You what?

    I’m not sure that you actually thought very long about what I’ve actually said!

    David H: “If you were born blind or deaf would you consider that to be an integral part of you?”

    I have worked with both blind and deaf people, and they do. If you don’t like this answer, tough titty. Your analogies aren’t really that good, David. There are better ones.

    David H: “Where is your anger and outrage towards the mainstream doctors and parents who routinely prescribe things like ritalin or even worse drugs to children?”

    Okay. This is a biggie for me, so do NOT take this response lightly. I have just stopped talking to my sister because of this issue. And my anger at the doctor who routinely prescribe un-necessary medications… I am Chairperson of an organisation called APANA: Autistic People Against Neuroleptic Abuse. My anger is controlled anger, but it is definitely there. And I have a feeling that my nephew is going to be fed the same sort of shite I was fed. I’m not happy about this, but – hey, my sister’s view is that “the doc can call it what he likes as long as there’s not another like our David in the family”. My response here is not lightly given. It cost me my sister. If you insist on refusing to even TRY to see my view on autism, at least respect this point.

    David H: “You lost me.”

    Should have. Read it again and think about all the possible things that can influence outcomes. You may actually be surprised.

    David H: “But even with that many autistics are severely limited and not able to be independent. Are you even willing to acknowledge that fact?”

    Of course. I’d be a fucking useless psychologist if I didn’t! But that does not mean that those limited lives cannot also be fulfilling or useful… just ask Amanda Baggs. And as for independence, I hate to tell you, but no single person on the planet is truly independent: we all depend on one another to varying extents. Some may be more dependent that others, and this may be long term, but for many, it is shorter term. Having said that, I have very definite support needs, but they are no different from a CEO who needs a secretary/PA: someone to do the job that the person needing the support cannot do. In occupational terms, there is no difference whatsoever.

    As Joseph says: “FWIW I see nothing wrong in trying to address weaknesses, so long as strengths aren’t neglected or treated as weaknesses.”

    I have no problem in addressing points on which someone experiences difficulties… why deny *any*body support that they need?! But one has to remember that there are many things about being autistic that have been bloody useful to society. And the high-functioning-low-functioning thing is not an issue here: Amanda Baggs has written some bloody brilliant articles on the autistic experience (as she gets it) and facilitated fascinating dialogue with her autistic peers as well as non-autistic acquaintances and friends.

    Joseph: “Autism is a package – the weaknesses are part of the strengths.”

    Two sides of the various coins, basically.

  26. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 20:01 #

    Ruth: “I would rather spend time in the lab than get my nails done or go out to a party.”

    Exactly… doing things that feel purposeful on a personal level. Equally valid with going out and getting ratarsed… depending on what someone values most at that time. Reading texts and research papers is more entertaining for me than watching a football match that I have no interest in, but the fact that I love my science should not be seen as a means to assume that the quality of my life is any less than the quality of the life of a person who goes out of a Friday night and gets ratarsed! I may seem to miss out on that, but – having been there, seen it, done that, and found that it doesn’t give me that so much QoL that I’d want to keep doing it – I can’t see it as being my particular bag.

    Ruth: “I am not sad that I miss out on other activities-I do the things I value.”

    Again, exactly.

    “There were times in my life when being different was hard, but I don’t regret it now.”

    BTSIDT!

    And it was bloody awful….

  27. David H September 15, 2006 at 21:49 #

    “To put it another way, if I suddenly turned into an ordinary NT individual,”

    Not all NT individuals are ordinary.

    “many things I’ve done in my life would no longer be relevant or interesting to me, because NTs are not usually interested in such things.”

    I don’t know what specific interests you’re referring to but NT people can have a vast array of interests. I would agree that the average NT individual leads a more balanced (work + play) life than the way you all seem to be describing yourself but some NT people are extremely dedicated to their work and spend their entire day & night at the office – but they’re not autistic.

    “I don’t know that I’d have the skills to do those things, frankly. I would not be me, in essense.”

    Are you saying that autistics are smarter than NT people? There are plenty of geniuses who aren’t autistic. I have some researchers that fall into this category and most of them are just “regular” guys who happen to be extremely smart.

    “Another example is this. Suppose Rain Man is completely cured. According to your view, he’d still be a human calculator, except all of his deficits would be gone. I say that is impossible. Autism is a package – the weaknesses are part of the strengths.”

    Tough question. Maybe if Rainman was cured he would know how to use his mind to act like a calculator when he desired. But anyway, those types of savant skills are not the norm. Do you think all autistics have that type of skill?

  28. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 22:00 #

    David H: “Do you think all autistics have that type of skill?”

    For what it’s worth to you, David… I don’t think that all autistics do. Skills are variable, regardless of populations.

    Might not really be a comfort, but it is a truth. It isn’t necessarily a death sentence, but it is a truth.

    I speak as one who does this kind of assessment. My battery includes Wechsler tests, which have timed elements, especially in the performance subtests (the non-verbal bits). But it would certainly be interesting to see what happens with non-timed tests. And maybe even with unusual vocabulary tests… Has your lad been assessed using a properly normed non-verbal IQ test? I think here about the TONI-3 or the C-TONI… they may yield useful information. These differ from the Raven progressive Matrices in that the administration is also non-verbal… Just offering an idea…

  29. Ruth September 15, 2006 at 22:03 #

    Of course not all autistics are brilliant. But even the ordinary autistics and many with disabilities also have a different way of viewing the world that I think has value. I don’t know now how independent my daughter will be as an adult, but she sees things most people never notice. I have also been surprised at how much she can relate from when she was nonverbal. She appeared to not interact, but can still describe a Disney on Ice show from 4 years ago.

  30. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 22:03 #

    David H: “Are you saying that autistics are smarter than NT people?”

    Nah. I doubt that any of us here would say that.

    I’d say, for certain, that autistics have the edge on certain types of intellectual ability tests and that non-autistics have the edge on others… and therein lies the difference: the abilities that autistics tend to excel in are amongst those lesser-valued by society. Even Uta Frith noted that as far back as 1989, if I understood her text correctly…

  31. David N. Andrews BA-status, PgCertSpEd (pending) September 15, 2006 at 22:08 #

    Ruth: “She appeared to not interact, but can still describe a Disney on Ice show from 4 years ago.”

    My daughter’s the same… she told me in sauna that she remembered pointing to a building some years back (she’s only 7½ now, and this was in about 2003) and saying, “Toi on Daddyn tarha”… that’s Daddy’s nursery (that’s how I described the School of Education at the University of Birmingham to her… so *she* had something she could relate to). She was largely non-verbal herself at the time… and yet, those days, I did the Block Design (from both WISC-R and WASI) on her… mental age, both times… 12yrs.

    She was basically 4yrs, 9 mths.

    Hmm…

  32. Joseph September 15, 2006 at 22:24 #

    Are you saying that autistics are smarter than NT people?

    That’s kind of like asking “are men smarter than women?” I don’t think it’s the right question and it basically tries to collapse everything into a single arbitrary dimension.

    An autistic person may not be smart at say, science, but may be very smart at playing basketball or painting.

    You mention geniuses who can be non-autistic. Consider that intellience is very heritable and that giftedness occurs in a very small percentage of the population only. Genius is clearly statistically abnormal, and there must be a reason for that.

    Do you think all autistics have that type of skill?

    Of course not. But in some cases I’m sure autistic people have strengths that aren’t noticed by others looking in.

    That was just a (fictional) example where weaknesses and strengths are pretty acute and noticeable. It varies with each person, but the overall considerations are the same.

  33. Joseph September 15, 2006 at 22:54 #

    Here’s a better way to explain anti-cure to David H:

    Suppose there was a technological way to turn you into Einstein. That is, you would have all of his strengths, weaknesses, interests and personality. Your old strengths, weaknesses, interests and personality would be overridden by the new ones. Would you take that opportunity?

  34. Bartholomew Cubbins September 15, 2006 at 23:09 #

    “Of course not. But in some cases I’m sure autistic people have strengths that aren’t noticed by others looking in.”

    One of my greatest fears after having watched Getting The Truth Out is that the masses have given up on some people. It seems that with a little bit more effort and creativity, novel and functional communication modes and devices can be developed to improve the connection between some, if not many, of those autistic and not.

  35. David N. Andrews BA-status, PgCertSpEd (pending) September 16, 2006 at 00:13 #

    Joseph: “Here’s a better way to explain anti-cure to David H”

    Won’t work…

    I guarantee it!

  36. Ms. Clark September 16, 2006 at 07:57 #

    Test comment regarding style issues… not mine, the web page’s.

  37. María Luján September 16, 2006 at 15:01 #

    Hi
    The point is that in ASD nothing is simple in my experience and the personal attitude depends on your experience of ASD in your child. This is why I tell once and again that there are so many ideas about ASD as parents and so many autisms as autistic children .
    And the assignation to me of the feelings, thoughts, ideas, “beliefs”,approaches (in tests and treatments) of someone else is simply wrong.
    We are in a situation where dialogue is impossible, when only in selected places learning of any kind is present and where the blogosphere has been reduced to two kinds of the interactions: the war or the echo.
    But, honestly, almost nobody seems interested on the whys of the other side ( in my personal experience only 2 people).And as I told you several times, there is nobody that represents me or my son. For now, I represent us.My right and my duty.
    Sorry, for me autism in my son is not a state of being. It is incredible more complex than this and it has many many levels of analysis.
    María Luján

  38. Ruth September 16, 2006 at 17:06 #

    When I was at my lowest point, shortly after my daughter was diagnosed, I would have benefited from knowing some people who had older kids who had been through this. I guess my failure to communicate my feelings of hope. My daughter is doing better than I dared hope then. Knowing how much of the autism is in my family of odd-but-capable people has helped me. I hope more people can look at us and not despair. Yes, I lived through poop on the walls-I joked about applying for an NEA grant for performance art (Findlay only used chocolate, we had the real thing). It wasn’t easy, but it didn’t last forever. Maria, every case is unique, but clinical science must simplify to make overall sense of a disorder. I’m sorry that doesn’t work for you.

  39. María Luján September 16, 2006 at 17:39 #

    Hi Ruth
    The point was that clinical science did work for me, once the right thing was tested. All the analysis in my son are mainstreamed, in mainstreamed and very trustable labs
    As I told before, things are not simple… and acceptation and hope is not the issue for me.
    María Luján

  40. HN September 16, 2006 at 20:02 #

    Many of the issues being discussed here are covered in Elizabeth Moon’s book _Speed of Dark_:
    http://www.amazon.com/Speed-Dark-Elizabeth-Moon/dp/0345481399

    For us there was an early indication that things would not be normal for our oldest. His seizures started when he was two days old. He had several EEG’s and a CATscan during the week he spent in Children’s hospital. He spent his first year on a low dose of phenobarbital (which was never increased so he was weaned by growing).

    He had another very nasty seizure after the phenobarbital stopped, but he was dehydrated from a nasty gastrointestinal bug (one that is probably now preventable with the new rotavirus vaccine).

    He has been seen over the years by three different neurologists… and none of them has pinpointed the cause of the seizures nor of the resulting damage to the Broca’s and Wernicke’s area of his brain. No one knows if it was due to something occurring a few into my pregnancy, or to the birth (he had a big head, probably should have been a Cesarean), his first seizures or the last seizure when he was a year old… or to the year on phenobarbital.

    No neurologist has diagnosed him as being autistic. But he has been diagnosed as oral motor dyspraxic with some other issues. He has always done eye contact, been very sweet and empathetic (in elementary school he made sure to make friends with the new kids). On placement tests he scores low average in math and reading, and in the basement for written expression (he would never have a blog like some of the autistics in the Autism-Hub). He has no outstanding talents other than being a very sweet boy who causes even the mean/rough kids to befriend him… and for a sneaky wicked sense of humor.

    But now that he is 18, a school psychologist proposed that he might have Asperger’s. huh? Fortunately, she cannot change his classification to that because he would then LOSE services. As it is he is on the highest priority of the waiting list for the state’s Dept. of Social and Health services post-secondary vocational training program because he is “most severely disabled”.

    Do I sometimes wish he was not disabled? Yes, I do.

    Would supplements, drugs, chelation or other things spouted by the “bio-med” group repair his brain? No… absolutely not.

    Is there anything or anyone to blame for his condition? No… absolutely not.

    Is there one thing good about his disability? Yes, actually there is… I have learned about a world that most do not, and I have now have a great deal of humility (plus, I put no pressure on my younger kids in school).

    By the way, I spent a few days at my sister’s house recently. She has absolutely no clue about this type of blog, the controversies involving vaccines, Generation Rescue nor Neurodiversity. She did mention that about a year ago when she being a “stay-at-home” mom she and a few other moms would have a weekly bowling get-together. Unfortunately one of those other moms was found to be very annoying. The annoying mom was always talking about chelating her kid and how expensive it was. I thought it was an interesting perspective.

  41. Ms. Clark September 17, 2006 at 01:48 #

    HN’s sister’s experience is absolute proof that being near a kid under chelation makes the parents unreasonable, self centered whiners…. or maybe that self-centered whiners are more likely than others to chelate their children… see how this correlation stuff works?

    There are things about my ASD child’s health I would fix if I could, but I’m not willing to kill the kid in an effort to fix them. If I could make the autism go away I would not. If the kid was convinced that the autism was bad and needed to go , would I stand in the way? No. But it’s a stupid question. There is no way to make the autism go away.

    There was a young man (maybe in his mid 20’s) on an “Aspie” group a few years ago when I was on that group. He had “discovered” those supposedly brain enhancing drugs (smart drugs?) that became popular a few years ago… He could get them without a prescription or something… anyway, he starts taking them and reporting to the group his improvements.

    He said he felt more focused and more confident or something. Some said they might be willing to try the stuff themselves, many were skeptical. I don’t remember anyone telling him he was wrong to even try them, though someone probably pointed at that there may have been a risk involved.

    I pointed out that unless he asked an outsider to judge how much he was changing, his own opinion was really too subjective to mean that anything was changing at all. He said, no, for sure, he could tell he was changing.

    (OK)

    I can’t remember how that all turned out, but I don’t think he found the Holy Grail, the way out of autism. Autistics can be quite bold and think they are being normal, walk into a crowd, start talking… that doesn’t mean that anyone in the crowd thinks that they are acting normal. That being the ultimate goal of this young man, to function normally in a complicated social situation.

    My point is no one is being a fascist and trying to stop anyone from doing anything (except killing their kids and only certain agencies are in a position to even begin to slow down parents from putting their children’s lives in danger–for the most part parents can endanger their children’s lives without interference here in the US–see Neubrander’s and Bradstreet’s patients and the toy HBOT machines and O2 concentrators), but trying to get people to be reasonable. To look at things rationally and to question the big claims being made for “cures” and to question the claims being made about the utterly evil organization(s) to blame for robbing parents of the children they were “supposed” to have.

    There’s a sucker born every minute… there are a whole bunch of parents of autistic kids who have “sucker” tatooed on their foreheads and they are being taken to the cleaners by the quacks.

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