I don't know what it's like to be autistic. I don't know what it's like to raise an autistic child. For this knowledge, I have to rely on others, and there are plenty of talented bloggers out there who write about these experiences all the time. What I do know is that there is a cadre of autism "activists" out there who do a great disservice to people who do know something about these experiences.
One such example is Dr. Jerry Kartzinel, who co-wrote Jenny McCarthy's latest monument to her own idiocy. "Dr. Jerry" is infamous among many parents of autistic children for this quote:
Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one.
First, this may indeed resonate with many people. Having a family member with a chronic illness or developmental disorder sometimes breaks a person or a family. I'm not sure what he means by "soul" but in this case it would appear that he means that part of a person which interacts with others in a way that we approve of. Autism is a protean disorder, and regardless of its manifestations, different parents have different experiences with their autistic children. Some parents perceive their profoundly disabled children as having a rich "soul", and some may see even mildly disabled children as being "soul-less"---which is sad and unfortunate. From my read as an outsider, I see parents of autistic kids struggling to raise children whom they love as much as any "normal" child, and who they do not in any way perceive as soul-less.
It's not just that Kartzinel insults the dignity of autistic persons and their families; he also has a terrible mis-understanding of autism, its causes, and its treatments:
Kartzinel adopted a child and says that after the mumps, measles and rubella vaccine, his son developed symptoms.
"I did research. The child had a lot of diarrhea. So I was wondering 'I wonder if gluten, like Celiac's disease is causing this diarrhea,'" Kartzinel said. "Remove gluten, which is that elastic protein. And his diarrhea improved. I removed dairy and all of a sudden I had a child who was sleeping through the night. I started cod liver oil and all of a sudden I had a child making eye contact again."
This anecdote (very similar to Jenny's) is a damned poor basis for making recommendations to others---but that doesn't stop him. His pediatric practice is devoted to implementing his bizarre and discredited beliefs about autism.
Dr. Jerry is a fine example of everything that is wrong with the autism "movement". Rather than approach this spectrum of developmental disorders using the best tools we have (science), he makes it up as he goes along, applying faith-based methods, writing books, and making really lousy friends. What he practices isn't medicine---it's religion, and bad religion at that.
Who's soul should we be concerned about, Jerry?
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Against such stupidity the gods themselves contend in vain.
Are there any beneficial tools for ASD individuals provided by evidence based science that do not carry adverse long term medical complications?
I'm not sure i understand the question but there are lots of legit sources of autism info
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
I didnât see any references to any evidence based studies or treatments, do you have any references?
For a reasonable value of "do not carry adverse long term medical complications" the best options are not pharmacologic.
Studies generally show that psychosocial therapies help to varying degrees, but the studies aren't necessarily of high quality.
Risperdone shows some benefit, but reasonably could be said to have adverse medical complications.
Refs:
1: Dev Med Child Neurol. 2009 Feb;51(2):95-104 PMID:19191842
2:Neuropsychiatr Dis Treat. 2008 Aug;4(4):723-30 PMID: 19043516
gee Chuck, even I can see your question is a trap baited with rotten meat.
"gee Chuck, even I can see your question is a trap baited with rotten meat."
If that is all that evidence based science has to offer, then call a spade a spade.
Chuck: you couldn't have revealed your true thoughts more clearly. I don't need "treating" for autism any more than you need "treating" for being a fool.
Chuck has failed to respond to the evidence based medicine provided to him - I provided citations in good faith.
Evidence based medicine has one big advantage over the alternative - no false hope, no dangerous treatments that we KNOW don't work.
Jimbo Jones - I'm glad that you don't need treatment, I'm a fan of the neurodiversity movement. In your mind, are there any ASD people who do need extra help? You seem to be able to communicate well, but many people with ASD can't do that nearly so eloquently as how you dealt with chuck!
Chuck, you failed to fully grasp the insult in my comment. I'm not a doctor, not a scientist, barely qualifying for "nobody" status.
What I do have is a disabled child. My child suffered a severe closed head injury at age seven and it was three months before anyone could say for certain that any of the movements or sounds he made were intentional. So, don't give me any pablum about not understanding a parent's grief.
I also have a nephew with severe autism/developmental problems. He's six years old, cannot speak and is not continent. I get what the parent of an autistic child goes through as well as anyone can who is not actually the parent of one.
My child is now 33 years old and we're still battling with insurance coverage and "best practices" and all sorts of other things. The good news is that I'm now his partner, not his spokesperson in these battles. Do you have any idea what an amazing accomplishment that is?
I well remember the drug cocktails that seemingly did rob him of his "soul" though I termed it personality. When he was weaned off high doses of tegretol, I rejoiced that his personality was partially returned, even though it meant I had a lot more "personality" to deal with.
The one thing evidence-based medicine has got going for it is that as more evidence is discovered, the medicine can change. That's not true with other ways. And it's also why I occasionally rant against "evidence" being written in stone, or law, or guidelines difficult to change.
I was almost on board until the crap about the cod liver oil...
Jimbo Jones:
âI don't need "treating" for autism any more than you need "treating" for being a fool.â
I do not know if you have been diagnosed on the spectrum. If you ever needed educational or social supports, living assistance, or job training and did not choose to use these âtreatmentsâ because they are not evidenced based or provided by the medical community then you were foolish to do so.
Whitecoat tails:
Evidence based medicine has one big disadvantage, no proven results for ASD.
How many decades would you be willing to prescribe those treatments you listed to an individual and for what reason would you be willing to do so? Would you do so merely to placate the caregiver of that individual? What adverse medical reactions would be acceptable to you? What adverse reactions do you think would be acceptable to an ASD individual that cannot communicate?
Any treatment you may pull out of Pubmed are not evidence based treatments for ASD, they are evidenced based treatments for symptoms and the only reason that YOU would be prescribing them is because you could not provide another treatment that is evidence based.
There are no evidenced based causes for ASD other then previously determined genetic disorders like Fragil-X, Retts, Downs, and Landau-Kleffner Syndrome that increase the risks of being diagnosed with ASD. Genetics has not been a proven cause and most likely will only provide an explanation to a sub-set of the population. What are the other factors that increase the risks of being diagnosed with ASD? Studies that are currently being undertaken, may actually never be published because the subjective diagnosis criteria will have been changed before the study can be published, making the study dated and unusable before it is even printed.
You are confounding the general success of a methodology with the results to date in one particular area. It is a fallacy of unrealistic expectations. Not good.
A list of the problems that we haven't "fixed" yet is infinite, however the list of problems we have helped is longer than for any other way of approaching medicine.
What do you believe will be provided by the evidence based methodology for ASD, as it is currently defined and in the future, and when do you think it will happen, if ever?
Unrealistic expectations are often provided by many in the medical community, using evidence based treatments or not.
I hope you sleep well in your pharma funded fantasy world. Why don't we start with the question-- Why does the U.S. have one of the highest infant mortality rates of 1st world countries and gives more than double the vaccinations of the lowest? http://www.generationrescue.org/documents/SPECIAL%20REPORT%20AUTISM%202…
Well, as long as we're asking silly questions, dad, how come god won't heal amputees? How come autism diagnoses have increased since the end of the Cold War? Why do people in the Great Lakes states drink bottled water EVER?
PAL
I have had enough experience with you to understand where most of your responses are coming from. One of the questions in post 16 is a completely legitimate question for this thread and has been asked by many bloggers. I am hoping that you were not asking it in jest.
Chuck: "If you ever needed educational or social supports, living assistance, or job training and did not choose to use these âtreatmentsâ because they are not evidenced based or provided by the medical community then you were foolish to do so."
Oh, but such support is very often indeed evidence based. The evidence may be wide ranging, including qualitative as well as quantitative work. The notion of identifying and then trying to implement best practice is common to many fields, including social policy and social work.
Tanners Dad, David Gorski has already taken a good look at the Generation Rescue study. But while we're playing, here's another nugget: PISA educational rankings. Not only do vaccines cause autism, they also fry American children's brains. It's all a plot by dastardly immigrants. Dumb down the natives with evil vaccines, then take over all the top jobs.
You heard it here first.
Eagerly awaiting the next Generation Rescue report,
Perceval
Did someone just quote a Generation Rescue "special report" as if it was "science"! Baaaahaaaa hahhh hahahh...I am laughing out of the room. Arguement, fail!
Thanks for the link to NINDS in the comments PalMD, I've been looking into sources of information on Autism for a family member and have occasionally found it hard to sort the good from the bad.
Tales
Whitecoat Tales
As in stories, not what your dog wags.
You make a critical mistake. Nothing else has proven results for ASD.
If they were proven, there would be evidence
Then, it would be evidence based medicine
Tanner's dad - the pharma shill gambit is played out, can't you guys come up with a new thing? You can't just try to discredit everyone who disagrees with you, the evidence is real.
I have my own disability, my own cross to bear: an allergy to the salespitch. Small doses of the pitch others barely notice DRIVE ME FUCKING INSANE!!!!111!!!!!
The most tiresome snowclone EVAR:
"PEEPS TODAY HAZ BAD NEED DAT SIENCE NO ANSERS.
"WE HAZ A SAD.
"OH WAIT, DIS GUI I NOES HAZ ANSER!
"U CAN HAZ TOO!
"YAY!"
I must leave you now, as Chuck just gave me a rash.
Help? By the nine hells, yes. Help would have been great earlier, and is much appreciated now. I'd wager that most people with ASD would love help. But that's help in the same way that the nerdy kid in Gym class needs help, not in the same way that someone with the flu needs help.
By the way, I'm able to communicate well in text, I have more difficulty verbally. I'm informed that this is pretty normal for an aspie.
Those aren't treatments. Those are, as you say, education, support and assistance. No, I'd rather not be treated by a fool like you; that might involve being hugged until I scream myself into unconsciousness. Or being shocked for two seconds every time I do something you don't like. Or dying from a fatal, and pointless, chelation. Or being told that flapping my hand in public is wrong and shameful, and that I'm broken and defective and need fixing.
I'm not broken. I'm not defective. I don't need fixing. I don't need treatment. I do need help in understanding a world full of NTs, but that doesn't mean I want to be one.
Whitecoat tales:
âYou make a critical mistake. Nothing else has proven results for ASD.â
I have made no mistake. I have pointed out, and you have confirmed, that all medical professionals are all on the same footing in that they currently have no evidence to support anything they are doing for the causes and treatments for any ASD. Any parent that goes to a medical doctor for assistance concerning ASD is naive and completely misguided.
Dr. Benway:
You should probably have a real medical doctor look at that rash. It is probably from your own droppings.
Jimbo Jones:
Good luck to you.
If you ever needed educational or social supports, living assistance, or job training and did not choose to use these âtreatmentsâ because they are not evidenced based
Actually, there's a fairly large body of literature on the use of job training and other forms of social support in AS. It works far better than chelation and other forms of torture. (Well, as Jimbo Jones points out, it doesn't "cure" Aspies or make them* "normal", but it does make it easier for people with AS to interact with NTs which is all the "cure" I'm really interested in. )
*Them? Us? I've never been formally diagnosed, but I have some Aspie traits and do horribly on formal testing of ability to read emotion through people's expression--as in _worse_ than the average Aspie. On the other hand, I'm in a long term relationship which practically excludes the diagnosis, at least traditionally. Maybe the "autism epidemic" is due to more reproductive opportunities for socially awkward people--and therefore more autistic genes being passed to the next generation.
There was a change in diagnostic criteria in the mid-'90's; many who had previously been classified MR/DD would now be classified as AS.
That should be ASD.
What Dr. Kartzinel fails to mention is that his son was adopted and the birth mother was a drug user. That in itself could contribute to the child's autism.
Mrs. Kartzinel, as Dr. Kartzinel states on his numerous interviews, said "You broke him, you fix him"..pertaining to a child.
I find that the people who are "broken" in that family are not the children.
Jeanette
Chuck I'm curious, what alternative do you suggest to EBM?
Guess at a treatment and if the person seems to improve then sell it to all and sundry? Surely as an ethical person you would want to know if it actually does work? Which would require a study and would then become EBM.
On topic: I'm sure that Dr. Jerry Kartzinel does have a soul...it's just being slowly drained by Jenny McCarthy.
These fake "experts" are snake oil salespersons who dehumanize autistics for people's money. Unfortunately, politicians side with them. I think that I am the only person who has posted a single video criticising Jenny McCarthy. "Jenny McCarthy is Wrong on Autism" From its comment section, the mercury militia are only a small percentage of parents of autsitic children.
Then there's another type of "cadre" of autism activists, the one that consists of people who present themselves and/or their offspring as autistic although they are hardly diagnosable as such by any stretch of the imagination. These people represent another misinterpretation of autism. They expand the meaning of the disorder far beyond the boundaries of what it is scientifically meaningful to call autism. In their hands autism turns into a kind of alternative identity, or more precisely a substitute for one that was missing, and to a subculture that compensates for the lack of community in modern society.
Autism is not the only psychiatric category to be used for such purposes but it certainly seems to be the most popular. I think of all this as pertaining to the wider phenomenon of modern alienation. People are lost and confused, and want some kind of structure and simplicity and certainty in their lives. A phony medical identity can be a handy short cut to an experience of coherence.