Every so often someone attempts to misrepresent my statements and/or thoughts/blog posts etc. Why? Because it suits their agenda to do so I guess.
One of the usual misrepresentations is my opinion on biomed. As an example, a commenter on YouTube recently told me that I was against treating autism in any way, shape or form which was news to me. When I asked this commenter to point to any proclamation of mine to back that up, he fell strangely silent.
There are people ‘out there’ to whom life truly is black and white. Autism is mercury poisoning (or for the real hardcore – thiomersal). Autism is hellish. Kev Leitch is anti Biomed.
Obviously, none of those things are true but people believe it. Go figure.
So Biomed. Am I against it? No. Am I against what some people might think of as Biomed? Yes.
I’m not against biomed as a concept. If I did I’d be a rather large hypocrite. My daughter takes vitamin supplements (Vitamin C), she also take Omega-3 fish oil. She also uses a steroid inhaler as she’s asthmatic. If she’s having trouble sleeping over a period of nights we may use melatonin. Does that make me a biomed parent? I’d guess it does to some people. I’m quite happy to be thought of as a biomed parent, just as I am a neurodiversity parent. Whatever.
Here’s the thing. Vitamin C supplements, Omega-3 oil, steroid inhalers and melatonin won’t ever ‘cure’ autism. She has those things because we feel, as her parents that she needs them. Amazingly, I give supplements to my non-autistic kids too. Because we feel they need them. Not because we’re treating them for something.
There’s a disturbing amount of people however that _do_ see these things as treatments for autism. The idea is bizarre. How exactly does a steroid inhaler ‘cure’ autism? These are the people that I find troubling. I am against what these people try to claim. I’m sure some of it helps some _comorbidities_ associated with autism, but I am equally sure it won’t ever cure autism. Do I have an issue with that? Yes and no. There’s nothing wrong with anyone trying to help their kids to not be ill. However, it saddens and troubles me to see autism medicalised and touted as something that can be cured with minerals, HBOT, chelation and the other extreme therapies. I’m sorry but that stuff is bullshit. The people who peddle it are, at beast, wrong and at worst, trying to rip people off.
Here’s a prime example of the worrying state of biomed:
My son is 10 months old. He had oxygen deprivation at birth and his SPECT scan shows mild hypoperfusion in the left temporal lobe, a little less in the right temporal lobe, frontal lobes and in the cerebellum. The scan report however only says mild hypoperfusion in the left temporal lobe. I have read that hypoperfusion in the temporal lobes is a hallmark of autistic children. At this stage no one knows how my baby is going to develop, but I don’t want to take any chances. he’s already delayed in speech, imitation and playing social games.
Yes, you read that right. 10 months old. And his mum is concerned because a 10 month old is apparently speech delayed. Don’t know about you but I didn’t know whether to laugh or cry when I read that. For extra chills down your spine read the rest of the responses. No one – *no one* – questions why a 10 month old needs HBOT. or, even more pertinently, _what’s odd about a 10 month old not talking_ ?
This is the sort of stuff that scares the crap out of me.
On the other hand, for some people, biomed is nothing more than a GFCF diet. Didn’t work for us but what the hell – can’t do much harm either.
So biomed is a spectrum too. However, there’s a distinct line that gets crossed as well. For some people, biomed fits their preconceived agenda of all doctors being evil. These people are dangerous. Anyone who sees life in absolutes is dangerous. Life is not that simple or clear cut. Such people are usually deeply unhappy about some aspect of their lives and need to fabricate an enemy or a conspiracy to rail against. Instead of seeing the reality of human screw-ups they see a paranoid fuelled plan to stop them or hurt them or both on a personal level. The tragedy is how often they drag their kids along with them. It’s really worrying to me how much the mercury militia crowd have moved down that path. It’s one thing to suspect thiomersal might play a role in autism and quite another to ‘know’ it and refuse to accept, or even _read_ anything to the contrary, and yet that’s where they’re headed as a group.
Someday I’m going to blog about the Combating Autism Act in the US. Its fascinating to an outsider to see the evolution of this bill and reactions to it from the mercury crowd. It needs a really in depth examination but suffice it to say (for now) that the mercury militia aren’t happy as the CAA disregards specific vaccine language. That’s how much tunnel vision exists in the mercury militia at the moment – nothing to do with vaccines? Not interested.
Amazing how even autism can become a single issue subject to some isn’t it?
So – biomed – its neither good nor bad. There are things wrapped up in it that seem to be good and things that make no sense and are very worrying. Same goes for biomed people.
Please also see Zilari’s recent post on the subject.
Left Brain Right Brain 
That linked discussion thread seems a little on the crazy side. Of course it’s difficult to know exactly what a 10 month-old child is like from only a few descriptors over the internet. Even crazier is there is now a person, apparently from an autism doctor’s office, apparently advising this person to increase HBOT treatment to higher pressure and higher O2 concentration.
“In your case it would be better to do the hard as it has more oxygen.”
I have no idea what kind of education/training this person has, and it is possible that they have communicated privately as well and that he has much more detail about the child (although I somehow doubt that).
For the record, I also happen to give my son cod liver oil for the Omega-3. I don’t think it will make him less autistic. There’s some evidence it can help with hyperactivity, maybe mood swings, memory, and things like that. Is that even “treating autism” or more of a nutrition choice? I do avoid vitamins because their long-term safety is unclear. But if he were not sleeping well, I might consider giving him multivitamins or something else.
Thst link was scary, if the stuff said there were said about the black or gay community there would be outrage.
Alas if it is white middle class parents doing something wrong no one says a word. (in the wider community)
Did you see this?
One other treatment you may want to consider is sacral cranial therapy. Your child’s skull can be “re worked” or “re molded”. It is amazing what this therapy can due for the brain. Look up more info. on line about this and find a gooood therapist…experienced.
It’s true. Laugh or cry, that is the question.
Good points, but I get wary of the “spectrum” analogy only because people often make some sideways logic-jumps from that wording to, “There’s a spectrum of biomed. And a spectrum of autism. So people who do more biomed. Probably have more severely autistic kids.”
Which is not logical, but I’ve seen it used that way, so I’m wary of spectrum analogies in this in general.
I’m about to write something on biomed and it’s not anti-biomed, or at least not totally. As some one who seems to need more vitamins than the average and changed her diet to get that – don’t take supplements as such because i think the diet should provide it in the correct environment (translaton – we don’t know what’s missing when we take supplements en lieu de), biomed makes sense, but for everyone since all it should be doing is catering to the individual needs, which seems to me to differ quite markedly from person to person. The trigger for all this waffle was James glutathione paper, which is really really interesting and not ‘wrong’ as such, though I note that the IOM told Bradstreet bluntly that the p values for James data were wrong and the Geiers sure didn’t correct them when they used them at the Autism One conference 2006. Anyways, the point of those result were clearly that something is going on and the culprit could well be stress since stress is a depleter of glutathione and we know from cortisol studies (used as a marker of stress) that autistic children are under a lot of stress, which is pretty much a ‘well duh’ moment. Of course they are in the environments they are routinely subjected to. Now , some off the wall character, whose name escapes me brought up the interesting point that chronic fatigue sufferers have depleted glutathione levels too, though in their case the stressors may be viral rather than environmental, but the body does not differentiate (and that’s a whole other story – the usual quack tactic of assigning a universal anti-oxidant like glutathione only one role in the body – mercury removal). Now, hands up the number of folks who’ve suffered for years with sadly defective, or so it seems, energy levels. What about autistic inertia? Looking at it, the solution seems not to be so much biomedical, though it’s probably not a crash hot idea to be vegetarian and autistic simultaneously (cysteine intake), but to get the stress down. Joel wrote a post about how he is doing so much better energy wise than six months ago. I wonder what’s different about the environment.
So yeah, if biomed can help and to put it very bluntly, given my experience with a young autistic’s limited dietary preferences, supplements for just about every vitamin, essential fatty acid, essential amino acid, omega 3 etc would qualify as medically necessary. How many autistic kids take to sardines?
alyric-
How many autistic kids take to sardines?
How many non autistic kids take to sardines? ;^)
kev-
Interesting that you use some of the same types of supplements/vitamins for your daughter as we use for our son. I actually tried to say this on that forum a couple of times, but they didn’t seem to care and still said I was anti-biomed. One of the best comments ever to come from that forum was “I’m not anti-biomed, I’m anti-stupidity.”
I’ve asked several people who use clay baths or those electric foot baths to explain to me exactly how ‘they draw metals out through the skin’. Cells tightly regulate how metal ions pass in and out, using ion channels and selective transport. Toxic metals aren’t just floating loose, and can’t just diffuse through the cell membrane. So far no takers, just claims that they see stuff in the bath after, it must work! Just because clay can bind to dead skin and skin oils doesn’t mean you’ve removed Hg from your kid.
We used a SSRI for our daughter, but now she doesn’t need it. It helped with her sleep-cycle and some anxiety. At least I can see a rational mechanism for how it can help.
My daughter’s favorite meal is salmon, rice and broccoli, followed by ice cream. No, no GFCF diet here.
Hi Kevin –
Medium term lurker, first time poster.
I don’t know if my son’s autism was caused, or is related to, mercury poisoning, mmr, my genes, sunspots, nutrasweet, alien implants or some combination of the above. I do not know if I will proceed with treatments to attempt to remove metals from my son.
I do know that the only people that have made accurate predictions about what would make my son feel better, act better, and show improved cognitive function are those recommending biomedical treatments. I also know that the opinions of adult “autistics” capable of navigating the Internet and posting as to whether or not autism should be cured are completely irrelevant to me. The spectrum definition new has been cast too wide; the flu sufferer might as well tell the cancer patient that things aren’t really that bad. Just try to accept me as who I am.
By whatever mechanism, perhaps as mysterious as autism itself, Google’s algorithm returns your blog with frequency when users search for autism and DAN! related treatments.
I cannot speak for why others have attacked you; but I must say, I find it tragic that there are so many people that will so eloquently eviscerate the Bhuttars (sp?) of the biomedical arena as opposed to actively investigate the possibilities of biomedical research.
Many, many chemical abnormalities are documented in our children; we should be working to understand how these imbalances are affecting our children’s brains. It bothers me that I cannot seem to find discussions as vigorous as to why so many autistic children have inflamed neurons, neurotransmitter imbalances, chronic gastro intestinal issues, mineral deficiencies or other biochemical oddities. Instead, time and energy is wasted on finger pointing and self appreciating sarcasm. What a waste.
– pD
_”I do know that the only people that have made accurate predictions about what would make my son feel better, act better, and show improved cognitive function are those recommending biomedical treatments.”_
Whereas I know the exact opposite. Proving what?
_”I also know that the opinions of adult “autistics†capable of navigating the Internet and posting as to whether or not autism should be cured are completely irrelevant to me. The spectrum definition new has been cast too wide; the flu sufferer might as well tell the cancer patient that things aren’t really that bad. Just try to accept me as who I am.”_
How exactly is cancer comparable with autism? Or flu? It may well be your opinion that the spectrum definition has been cast too wide but that changes nothing in reflecting the reality of autism. I’m also curious as to why you assume (as you seem to be doing) that only ‘high functioning’ autistic adults have an opinion.
_”By whatever mechanism, perhaps as mysterious as autism itself, Google’s algorithm returns your blog with frequency when users search for autism and DAN! related treatments.”_
Its by design.
_”I cannot speak for why others have attacked you; but I must say, I find it tragic that there are so many people that will so eloquently eviscerate the Bhuttars (sp?) of the biomedical arena as opposed to actively investigate the possibilities of biomedical research.”_
If you’re happy going down that route then that’s your responsibility. Fact is however that there are an awful lot of very dodgy people – like Buttar – associated with biomedical treatment. I’d rather people had the opportunity to know more than the self serving hero worship put out by themselves. People have been killed, hospitalised and injured by people following DAN! based treatment protocols.
_”Many, many chemical abnormalities are documented in our children;”_
_”It bothers me that I cannot seem to find discussions as vigorous as to why so many autistic children have inflamed neurons, neurotransmitter imbalances, chronic gastro intestinal issues, mineral deficiencies or other biochemical oddities. Instead, time and energy is wasted on finger pointing and self appreciating sarcasm. What a waste.”_
It bothers me that you want to dictate my content. You cans tart your own blog for free. Instead you want to tell me what to write about. What a waste.
It bothers me that I cannot seem to find discussions as vigorous as to why so many autistic children have inflamed neurons, neurotransmitter imbalances, chronic gastro intestinal issues, mineral deficiencies or other biochemical oddities. Instead, time and energy is wasted on finger pointing and self appreciating sarcasm. What a waste.
Here’s a newsflash. There’s no hard evidence any of those things actually DO happen in autistic children more often than the general population. I mean, inflamed neurons?
Get real.
Hi anonimouse –
From researchers at John’s Hopkins specifically referencing inflammation in the brains of autistics.
http://paktribune.com/news/index.shtml?130770
From University of Washington School of Medicine on differences in brains in autistics and the presence of cytokines indicating inflammation:
http://www.azomed.com/?id=19584&title=Inflammation%20in%20brain%20tissue%20a%20possible%20clue%20to%20autism
I have a better paper that I cannot find now, but will send up later.
Is this real enough for you?
– pD
“I also know that the opinions of adult “autistics†capable of navigating the Internet and posting as to whether or not autism should be cured are completely irrelevant to me. The spectrum definition new has been cast too wide; the flu sufferer might as well tell the cancer patient that things aren’t really that bad. Just try to accept me as who I am.”
Well, that comment of yours passionlessDrone just goes to show how truly ignorant you are. If people who are non-verbal and previously institutionalized are classified as “high functioning” by your standards, then who the hell qualifies as “low functioning”? Just because someone is able to navigate the internet does not make them a “little autistic” anymore than someone who’s able to use a wheelchair to navigate the world makes them a “little quadraplegic”. Maybe you should refrain from making judgments regarding people you obviously have no first hand knowledge of.
passionlessDrone: From researchers at John’s Hopkins specifically referencing inflammation in the brains of autistics.
Hi pD,
I’m sure anonimouse is aware of the research from your links but took exception to the term “inflamed neurons” where you may have meant neuroinflammation.
passionlessDrone: I find it tragic that there are so many people that will so eloquently eviscerate the Bhuttars (sp?) of the biomedical arena as opposed to actively investigate the possibilities of biomedical research.
Might it be possible to eloquently eviscerate quacks and also investigate biomedical research?
_Might it be possible to eloquently eviscerate quacks and also investigate biomedical research?_
Oh,yeah. Happens all the time.
If you do real investigation into biomedical research — then the quacks like the big name DAN! docs and Buttar look beyond quacky, they look like ultra-quacky, bizarre, greedy, lying, and/or delusional scum buckets.
See how easily that rolls of the tongue once one has immersed oneself in the work of Vargas, Corchesne, Bauman, Piven, Mottron, Bertone, Casanova, Bailey,(not in any particular order)? Even Buie, Frith, Baron-Cohen and Happe have done _something_ reasonable with their time besides trying to bilk parents out of their cash and putting children’s health at risk.
Pd
Thanks for the links – but you need to read the fine print:
“These findings reinforce the theory that immune activation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial, or both, to the developing brain,” and
“Scientists have found hints that the immune system may be involved in autism, but not all studies have confirmed this,”
This stuff is highly speculative and pretty much on a par with how science works. This stuff is not ‘right’ yet and won’t be for quite a while. Consider the theory that autistics have “abnormally’ fast brain growth in the first 1-2 years. And that has pretty wide acceptance. But the latest is that they just have a different rate of maturation – slower. That theory can be taken two different ways, Either these people are ‘slow’ or the so called ‘normal’ folk reach their limits early and thereafter fizzle. I have plenty of anecdotal evidence for the latter.
Hi clone3g –
“Hi pD,
I’m sure anonimouse is aware of the research from your links but took exception to the term “inflamed neurons†where you may have meant neuroinflammation. ”
This may be possible, however, if when animouse said:
“Here’s a newsflash. There’s no hard evidence any of those things actually DO happen in autistic children more often than the general population. I mean, inflamed neurons?”
He actually meant something like:
“There is evidence of neuroinflammation in autistic brains, but no evidence of inflamed neurons in autistic brains.”
I’ll put my mastery of semantics up against his any day.
Neuroinflamation is a much better term.
-pD
Hi Gabesmom –
“Well, that comment of yours passionlessDrone just goes to show how truly ignorant you are. If people who are non-verbal and previously institutionalized are classified as “high functioning†by your standards, then who the hell qualifies as “low functioningâ€? Just because someone is able to navigate the internet does not make them a “little autistic†anymore than someone who’s able to use a wheelchair to navigate the world makes them a “little quadraplegicâ€. Maybe you should refrain from making judgments regarding people you obviously have no first hand knowledge of.”
I run into someone I think qualifies as “low functioning” every day.
There is a big, CRITICAL difference between non verbal and completely non communicative. A few weeks before my son’s third birthday he got a ‘nursemaids elbow’, essentially a dislocated elbow. We knew something (?) was wrong, but did not know if it was his elbow, wrist, shoulder, or what. It was not simply that Luke could not say “elbow”, “arm”, “hurt” or anything else. If we asked him, “where does it hurt?”, he did not know to point to his elbow. [He had never pointed at anything in his entire life.] He did not know how to draw an arm. [He has never drawn anything in his life, pencils are for mouthing.] He did not know how to sign, ‘arm’, ‘elbow’, or hurt. [He has never signed anything in his life.] All he could do was cry. For every other need, such as diapers, food and water, or other aches and pains, he shows the exact same behavior. Does this qualify as “high functioning” to you?
To be absolutely clear, I want to cure him of this. I do not want him to grow up unable to express the most primitive of needs. I’d make a million dollar bet that anyone capable of navigating the Internet, if they were to dislocate their elbow, will know exactly who to call, where to go, and how to get the point across to the doctor where it hurts. The idea that I should just wait around hoping that my son will develop these skills because some other have is ridiculous. That they express outrage that I might be ‘exterminating autistics’ or otherwise changing who my son is, by trying to cure him, is a sad joke. Compared to my son, those people ARE very high functioning indeed. They may have their problems, but communicating to a doctor about where they hurt is not one of them.
-pD
Hi alyric –
“These findings reinforce the theory that immune activation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial, or both, to the developing brain,â€
My “gut” instinct is to go with a less inflammed brain than a more inflammed brain.
“Scientists have found hints that the immune system may be involved in autism, but not all studies have confirmed this,â€
Surely you wouldn’t advocate waiting until every study confirms an immune system relationship in autism to say before backing of a claim that there is no evidence of immune system abnormalities in autistics?
In any case, the supporting evidence for mineral diffeciencies, neurotransmitter abnormalities and gastro issues are much more widely documented; if animouse comes back to defend his statement regarding the newsflash I am due, I can post much more comprehensive references.
“This stuff is highly speculative and pretty much on a par with how science works. This stuff is not ‘right’ yet and won’t be for quite a while. ”
I understand there will always be uncertainty in science. I happen not to have the benifit of waiting 20 years, and complete scientific consensus before trying to help my son.
“Consider the theory that autistics have “abnormally’ fast brain growth in the first 1-2 years. And that has pretty wide acceptance. But the latest is that they just have a different rate of maturation – slower. That theory can be taken two different ways, Either these people are ‘slow’ or the so called ‘normal’ folk reach their limits early and thereafter fizzle. I have plenty of anecdotal evidence for the latter.”
Perhaps this ‘abnormally fast’ growth was actually inflammation? I am interested in all types of evidence, including annectodal. Please post.
-pD
Hello again pD,
In your first post you said “It bothers me that I cannot seem to find discussions as vigorous as to why so many autistic children have inflamed neurons, neurotransmitter imbalances, chronic gastro intestinal issues, mineral deficiencies or other biochemical oddities. Instead, time and energy is wasted on finger pointing and self appreciating sarcasm. What a waste.”
Forgive my poor mastery of semantics but I read that to mean you object to some of the content on Kev’s blog and would much rather read about inflamed neurons and such.
pD: My “gut†instinct is to go with a less inflammed brain than a more inflammed brain.
Makes sense. Inflammation sounds bad, so less of that would be better, right? But how do we define, measure, and treat brain inflammation? How do we know it’s even a problem?
pD: Surely you wouldn’t advocate waiting until every study confirms an immune system relationship in autism to say before backing of a claim that there is no evidence of immune system abnormalities in autistics?
Who said there is no evidence of immune system abnormalities in autistics? Can you describe one of these abnormalities?
pD: I understand there will always be uncertainty in science. I happen not to have the benifit of waiting 20 years, and complete scientific consensus before trying to help my son.
But how do you know the things you are trying are right or wrong? Educated guess? trial and error? Random experimentation?
_”There is a big, CRITICAL difference between non verbal and completely non communicative.”_
There is indeed – about 15 years of hard work.
_”All he could do was cry. For every other need, such as diapers, food and water, or other aches and pains, he shows the exact same behavior. Does this qualify as “high functioning†to you?”_
No, it qualifies as ‘autistic child’. Sounds just like my daughter as of age 0 – 5
_”To be absolutely clear, I want to cure him of this. I do not want him to grow up unable to express the most primitive of needs.”_
To be clearer, you’d achieve more for your son by working with him. It won’t happen overnight, but it’ll happen. You’re placing all your options into one extremely flawed, potentially unsafe protocol.
_”The idea that I should just wait around hoping that my son will develop these skills because some other have is ridiculous.”_
I entirely agree – who suggested you do that?
_”Compared to my son, those people ARE very high functioning indeed.”_
Or, to put it another way – your son is a child. These are adults.
Hi clone3g –
“Forgive my poor mastery of semantics but I read that to mean you object to some of the content on Kev’s blog and would much rather read about inflamed neurons and such.”
Object, no. Saddened, yes. For a time, I thought the place to have discussions on biomedical approaches might be here; where better than a den of skeptics? Instead, I’m told to get real, to stop being ignorant, or go round and round as to if there is evidence for neuronal inflammation, but no evidence as to inflamed neurons.
clone3g: But how do we define, measure, and treat brain inflammation? How do we know it’s even a problem?
The trickiest part would seem to be finding a good way to treat it. (will research!) The John’s Hopkins team put up some good information on their findings; plenty of it is over my head, but detection and measurement seem to be within their grasp.
http://www.neuro.jhmi.edu/neuroimmunopath/autism_findings.htm
As far as knowing if it is problematic or not, the researchers claim that their findings are consistent with some other types of inflammatory responses, such as MS, ALS, or stroke, but interestingly, unlike those associated with encephalitis. If you’d like to leave the door open that this particular type of inflammation may be good, that is your perrogative. (sp?)
clone3g: “Who said there is no evidence of immune system abnormalities in autistics?”
Animouse did when he said:
Here’s a newsflash. There’s no hard evidence any of those things actually DO happen in autistic children more often than the general population. I mean, inflamed neurons?
I feel confident that had my list included ‘immune system abnormalities’ along side ‘inflamed neurons’, neurotransmitter, gastro and minieral issues that Animouse’s response would have been the same. Perhaps I am wrong, however. Animouse seems not to have returned to this conversation; if they (he/she?) would like to, and would like to say they do think there there is evidence of immune system abnormalities in autistics, I will offer my fullest apology.
clone3g: “Can you describe one of these abnormalities?”
Lunch time has ended, but in a few days I can post something. In any case, the simplest google search confirms the idea that researchers are finding significant immune system issues with autistics. Here is one that I randomly chose that again implicates cytokine production in autistics from researchers at the University of California.
http://www.eurekalert.org/pub_releases/2005-05/asfb-cwa050205.php
clone3g: “But how do you know the things you are trying are right or wrong? Educated guess? trial and error? Random experimentation?”
Our sons progress tells us if they are right or wrong. Educated guesses and trial and error have served me well so far.
We remove gluten / caesin from my sons diet and his eye contact, stools, and self destructive behavior all improve.
We give him an anti fungal agent, he displays hellish reactions initially (as predicted), and we see more improvement in his stool. [still not normal though!]
We remove all complex carbohydrates from his diet and he has normal stools for the first time since he stopped breastfeeding and pointed for the first time in his life. (after another predicted die off reaction). In the case of SCD we did perform a trial; give him a dose of sugary water with soy milk, and as predicted, his stools and behavior went to hell (my son nearly never has any refined sugar). We moved to SCD proper two days later and have seen amazing improvements in communication, socialization, eye contact, fine motor and gross motor skills within a month. To any readers, if your personal challenge involves gastro issues, give SCD a shot. If you are already gf/cf the jump isn’t too bad and it has changed our son.
We are also using b12 shots, pro biotics, GABA and multi vitamin supplementation. [Tests indicated my son has severe deficincies in zinc, selenium, and gut bacteria]. I cannot tell you that we have documented anything specific in terms of these supplements, but Google will tell you that many autistics have been shown to have problems creating B12, abnormal levels of GABA, bacterial issues in the gut and mineral absorption issues.
Is there anything you feel is wrong with what I’ve with what I’ve described above? Would you recommend I not try any of these things? If so, why? Are there dangers, other than to my wallet, from any of the things I have described?
-pD
Hi Kevin –
kevin: “There is indeed – about 15 years of hard work.”
I am of the opinion that my son’s problems involve the chemistry of his brain being imbalanced. It seems to me that many therapies (ABA/Floortime/Son Rise) are more about working through such an impediment than treating it. I realize there is some level of truth in your statement; my father said it best for me; “I’ve read that autism isn’t a death sentence, but it is a life sentence.”
Kevin: “No, it qualifies as ‘autistic child’. Sounds just like my daughter as of age 0 – 5”
From what I’ve seen, it qualifies him as a low functioning autistic child. Why do I say this? Because I’ve met many other children on the spectrum, and without fail, my son has fewer abilities, and bigger challenges than any of them. Are there worse kids out there? Yep. But every time the autism play group gets together, Luke is behind every kid, even those that are a year his junior.
Kevin: “To be clearer, you’d achieve more for your son by working with him. It won’t happen overnight, but it’ll happen. You’re placing all your options into one extremely flawed, potentially unsafe protocol.”
Hahaha! I’m very intersted in knowing how you think me spending 40 (80?) hours a week doing floortime, ABA, son rise, RDI, or whatever other treatment is going to cause my son not to have diarheah (sp?) every day? Or how it addresses his lack of selenium? Your argument also makes an ‘inflammatory’ (and untrue) accusation that I’m not working with him. I simply believe that working with him while ignoring the chemistry of his body is bullheaded.
The gains we have seen since going on SCD a month ago far eclipse the two years of speech and 18 months of OT my son has received. [I am of the belief that he is now getting nutrients his body stopped getting once he stopped breastfeeding and moved to solid food.]
Kevin: “I entirely agree – who suggested you do that?”
This blog has many threads involving the perceived fallacy of attempting to cure autism. It seems that it is OK to talk about curing a ‘comorbidity’ of autism; however, what I have been unable to distinguish is how the distinction between a comorbidity and autism itself is made.
Maybe I’ve got it wrong though. The following behaviors my son exihibts (sp?) are those that I’d like to ‘cure’.
Lack of communication. I’d like Luke to be able to carry on a conversation with anyone, anywhere, on any topic.
Social Awareness. I’d like Luke to understand when someone is upset or happy based on facial recognition. I’d like him to know when to wave goodbye, laugh at a joke, and flirt with a girl.
Self destructive behavior. I’d like Luke never to break another window in our house by smashing his forhead into it.
Tactile and auditory integration. I’d like to cure Luke of going into a fetal position if he hears a gunshot on TV, a sneeze in the car, or feels the fabric of certain sheets.
Imitation and learning. I’d like Luke to look when someone points their finger at something. I’d like him to imitate other humans. He does not have the basic components of learning by example.
Imagination and expressiveness. I’d like to see Luke play with a car, doll, or other abstract toy other than by mouthing it.
Self help. I’d like Luke to be able to dress himself, feed himself, wash himself, drive himself to work, and pay his bills.
Would you consider these things core components of autism, or are they all comobidities?
Anyways, lets say that I am wildly successful and Luke achieves all of these goals. Would you still classify him as autistic? If so, by what definition? If not, does the above list simply represent a list of comorbidities to autism?
– pD
(fyi – getting j/s error on spellchecker)
pD:The trickiest part would seem to be finding a good way to treat it.
I disagree and I believe this was one of the points Anonimouse was trying to make.
The trickiest part is replicating the research from the Hopkins group (at least one other team couldn’t), quantifying very specific markers that may collectively suggest excess neuroinflammation, identifying the source or cause, and then look to potential treatments.
I won’t deny that some scientists have found immune differences in some autistic children but “immune abnormalities” is a pretty broad term and there is very little replication of these findings.
I’ve used this example before but many Down Syndrome children have immune abnormalities. Does that make it a cause?
Plugging B12 AND autism into a search engine does not tell me that many autistics have been shown to have problems creating B12. What it tells me is that this is a popular yet unproven hypothesis centered around methionine synthase inhibition and/or anecdotal response to B12 injections.
From what I can tell, you are willing to selectively embrace certain ideas and research but you aren’t willing to wait or consider opposing ideas and research.
I’m sorry but your average ‘den of skeptics’ won’t respond to that attitude with patience and polite conversation.
Regarding cytokine findings, I think a possible correlate that should be studied is stress. It’s no secret that autistics appear to be sensitive to stress. And there are some findings in relation to cytokines and anxiety/stress. See, for example, this, this, this, this and many other papers.
Many things may co-occur with autism, but that doesn’t mean they are a cause of autism.
Research such as that done by Dr. Casanova is more likely to yield solid results in terms of what autism is and how it comes about, IMO.
The idea that autistic children are normal but temporarily injured is not likely and seems like wishful thinking.
BTW, I don’t think anyone here is suggesting that gastrointestinal illness should not be treated. But why kid ourselves by saying that this is treating autism?
PassionlessDrone — I could use a million dollars. Like a lot of autistic adults, I’m very low-income.
A few years ago, my staff took me to the doctor because I was getting increasingly quiet and unresponsive and looked as if I was sick or in pain. The doctor poked around, and I did not really respond much to the poking and prodding except for my usual discomfort at being poked and prodded. She asked a large number of questions and could not get particularly specific answers out of me.
She almost did not order an ultrasound. She was not sure what was wrong, but while she vaguely suspected gallbladder problems, she thought I would have shown more reaction to pain than I had, particularly when she poked at my gallbladder. (There’s a specific “sign” they look for when that area is poked — a strong response to pain — and I did not show it.)
At that almost-afterthought of an ultrasound, they discovered two large gallstones. At the surgery, the surgeon was furious that nobody had treated this sooner: My gallbladder had not only produced those gallstones but stopped working altogether. He said it should have been, and could have been, detected and operated on years prior.
Another story: When I was 16 years old, I started vomiting for unknown reasons. This was attributed (by institution staff) to anxiety, and I was given neuroleptic that only made the vomiting worse. I could not and did not point to a particular source of this. Only much later was it discovered that I had an intestinal blockage that any non-disabled person would have actually complained about or at least made motions to indicate something about.
Another story: A few years ago, I became severely dehydrated, my blood pressure dropped to a dangerously low level… and nobody noticed until right as it was happening.
Another story: I had severe pain that is either central pain or some other kind of neuropathic pain (in other words some of the worst pain out there), every day of my life that I could remember, that did not get treated until I was about 22, because I had prior to then been incapable of telling anyone about it.
Another story: Similarly, I had quite painful reflux lifelong and never got it treated until I was 20 or so, same reason.
A note: The gallbladder thing happened after I’d already begun treatment for the pain and the reflux, as in after I already had some clue how to talk about pain in some situations.
Of course, if you’d done any particular research on this, you’d find that even people diagnosed with Asperger’s syndrome (which means a certain level of verbal skills) have shown no particular outward reaction to things such as appendicitis and crushed testicles. And I’m not diagnosed with Asperger’s syndrome, but just plain old autism. (Sometimes with “low functioning” thrown in although I don’t believe in that term as being all that meaningful.) And I don’t speak, and have very limited communication about internal sensations. If you poke me somewhere I may be unable to tell you in any fashion at all where you poked me or whether it hurt or not, or in some cases may not be able to tell you until much later.
A lot of people could be collecting millions of dollars from you if you were really serious about your bet.
But, aside from that, if people were to believe you, it would have serious implications for my healthcare and that of people like me. Because then people could go, “Well if she was really in pain or sick she’d know how to tell us. After all, she uses the Internet.” An entire branch of my individual service plan (that is supposed to be about monitoring me for things like this, as well as teaching me how to better figure out and communicate about things like this) could be cut off just because I use the Internet. I’m sure that would save the government some money. So, of course, would my death once something went undetected because I didn’t say anything about it.
I’m fairly sure you don’t really want me dead. I’m fairly sure you honestly believe your statements about Internet use vs. healthcare communication to be absolutely true, so true that the idea you were betting my life and the lives of others like me on it would not even cross your mind. So here I am, crossing your mind. Think about it before you spread ideas like this. And if you were serious about the million dollars, there’s a lot of us who could use it.
I await your explanation for my existence. If it includes the idea that either (a) I really am a pathetic example of who needs a cure after all, (b) I am lying, or (c) I just don’t try hard enough, you’re way on the wrong track, and also unoriginal.