How to spot autistic adults
David Kirby's recent Huffpost with the truthful title: "There is no autism epidemic"
It's really hard to tell how wry or sarcastic Kirby is being when he says he now realizes that there has been no autism epidemic. He's not very amusing any way you look at it, and he has a track record of scrimping on fact checking. His book says that Asperger's syndrome is what used to be called, "idiot savantism." It's hard to explain how incredibly far from the truth that is. It's almost like a deliberately crafted error, it's so, so wrong.
In his sort of ill-tempered little blog rant on Huffpo, Kirby describes autistic adults who criticize his writing and publicity-producing activities saying that they "villify" him. He says he's pretty sure they mostly have Asperger's syndrome, not "real" autism. But then, he says that Asperger's people are what used to be called "idiot savants"... which by definition would make them "low functioning autistics." Hmmm.
How would he know what diagnoses his critics have? It's not like he'd ever ask them. He seems to avoid discussions with adult autistics (or adult Asperger's folks, or even "idiots savant") like the plague.
In his "no epidemic" blog essay he very narrowly categorizes the bunch of autistic adults that criticize him. He describes them as being basically just quirky and mean:
He then goes on to describe kids (Davey's kids?) who suffer from "autism," they aren't enjoying "neurodiverseness." He says real autistic kids are in extreme pain with something like a burning coal inside them. Apparently this burning coal thing happens much more often in autistic kids than in typical kids (who actually do suffer from pain, too, sometimes).
What Autism Diva wants to know is, if these truly autistic kids are unable to communicate, how is it Kirby knows what they are feeling? Further, how does he know EXACTLY what type of pain they have, how bad it is and EXACTLY where it is? Is Kirby a psychic?
He says these "true autistic" non-neurodiverse kids who can't communicate also have "rivers of diarrhea" apparently much more often than typical kids. Typical kids actually do have episodes where diarrhea runs down their legs, believe it or not. He describes autistic kids who bite their moms (perhaps much more often than typical kids, we don't have data on this, but typical kids do bite their moms sometimes). These little autistic monsters also ruin their parents' favorite carpets. OK. Get real. Like typical little kids (or even teenagers) NEVER ruin their parents expensive or favorite stuff. But this is worse, these little demons smear feces! Hmmm, even typical kids sometime smear poop. No, really they do. We don't have data on how often autistic kids do this, but apparently they don't all do it, otherwise it would probably be in the diagnostic criteria.
As long as we're categorizing autistic-like people...
What does a truly, classically autistic, poop smearing, late-speaking, tantrum throwing, pre-school disaster-of-a-human look like
when he or she
grows up?
Would that monstrosity ever be able to write as the autistic adult bloggers do? Would that awful waste of a child grow up to be able to criticize people like David Kirby?
Would that person want a cure for him or herself?
Well, here's a photo of a former poop-smearing autistic child, now autistic adult.
That's Dr. Temple Grandin. She's a university professor. She owns a home and drives a pickup truck.
Dr. Grandin doesn't usually speak about the controversy around the epidemic, but who has gone on record saying she would not take a cure if it was offered her. Autism Diva recently watched a program that was all about Dr. Grandin, they interviewed Grandin's mother, who mentioned that Dr. Grandin had smeared feces as a child.
Autism Diva kind of has a problem with parents who in a very public way give out details like that about their kids without good reason, but maybe Autism Diva just thinks kids need a little more privacy than that. Maybe Dr. Grandin doesn't care that people know that much about her childhood, maybe she gave her mom permission to give out that detail.
At any rate, Autism Diva's kid never had rivers of diarrhea and never had serious intestinal problems. Autism Diva's kid was a typical autism spectrum kid in that way. The kids with the extreme gut problems are a small minority of the whole spectrum, and it would seem that overall, autism spectrum kids may just have problems with digestion at close to the same rate as typical kids, it's just that the problems may get out of hand because the autistic kids don't feel pain in the same way and don't report pain in a normal way. Also, autistic kids apparently experience more stress and have more of the gut damaging stress hormone, cortisol, in their systems. Autistic kids usually are picky eaters, too.
Autistic kids may have a higher rate of problems with lactose intolerance and some may have less of an enzyme that breaks down some sugars. The symptoms of lactose intolerance include bad gas and diarrhea. It is unclear if autistic kids actually have food allergies more often than typical kids do. At any rate, it's far less than half of all "classic autistic" kids who have problems with diarrhea, in some studies the more usual problem with autistic kids digestion is reported to be constipation.
But all of these horrific problems if the kids that Kirby describes just MUST be a result of thimerosal in vaccines or even other some vague source of mercury, or even some other scary thing in the enviroment (he used to pretty much stick to rants about thimeorsal now he's branching out)... and whatever this evil toxic stuff is, it isn't what caused the "Asperger's syndrome" of his critics... so maybe they should just go do their Society for Creative Anachronism stuff and shut up.
But some of Kirby's autistic adult critics actually are "classic Kanner autistics" and either were diagnosed as having plain "autism" like Temple Grandin was, or would have been diagnosed as having autism had their parents lived in the right place and taken them to the right doctor. Frank Klein is one of them, Michelle Dawson is one of them, Amanda Baggs is too. Joel Smith still has trouble with speech and uses a communication device when he needs to. Patty Clark was one of them, but very sadly, she died. Kassiane (the Rett Devil) has Rett syndrome. The fact is that many people who are "classic autistic" children grow up to look something like what people think of as "Asperger's" adults.
Yes, some of Kirby's critics were just like Hans Asperger's little professors as little children. They grew up to become annoying nerdy bloggers who really, really have a strong dislike for him and his toxic rhetoric. And guess what? Some of them are parents of autism spectrum kids, and these Asperger's parents still think Kirby is unethical, untrustworthy and disrespectful of them and their kids.
Some of Kirby's critics are even regular, normal people! Shocking as that might be.
But getting back to the title of the blog "How to spot autistic adults" ... here's a little introduction to autie spotting:
This is not an autistic adult. This is a tantrumming typical child.
You should not expect an autistic adult to look like a giant tantrumming child.
Even autistic children develop, mature and grow in their ability to deal with change and frustration.
Autistic adults do not look like giant babies, either, though the mom in this photo looks surprising like some autism spectrum adult women. Note the messy hair and individualistic style of dressing.
Once again, autistic adults do NOT look or act like giant toddlers.
Autistic adults might look a bit like this young Star Trek fan, however.
This is NOT an autistic adult having a meltdown .... probably.
These could be autistic adults, but they also could be typical adults, or almost typical adults.... or adults who have had a bit too much beer at their picnic.
Hey that one guy looks like David Kirby! (just kidding)
Autistic adults can seem very much like typical adults if all you have to go on is a sample of something they have written, so diagnosing autistic adults or undiagnosing them based on what they write is pretty pointless. Many autistic adults can even pass for typical adults if you sort of tilt your head at an angle and squint and if they aren't under too much pressure and/or aren't cutting loose at a Star Trek convention.
More thoughts on Kirby and his long-distance diagnostic skills and attempt at defining "neurodiversity."
David Kirby plays the segregation game from Kevin Leitch.
Kirby: It's about "rivers of diarrhea" and "kids who spin like fireworks". from Joseph on the Autism Natural Variation blog.
Edit: See also: David Kirby and Sour Grapes over on Orac's blog.
Autism Diva
autie spotter
It's really hard to tell how wry or sarcastic Kirby is being when he says he now realizes that there has been no autism epidemic. He's not very amusing any way you look at it, and he has a track record of scrimping on fact checking. His book says that Asperger's syndrome is what used to be called, "idiot savantism." It's hard to explain how incredibly far from the truth that is. It's almost like a deliberately crafted error, it's so, so wrong.
In his sort of ill-tempered little blog rant on Huffpo, Kirby describes autistic adults who criticize his writing and publicity-producing activities saying that they "villify" him. He says he's pretty sure they mostly have Asperger's syndrome, not "real" autism. But then, he says that Asperger's people are what used to be called "idiot savants"... which by definition would make them "low functioning autistics." Hmmm.
How would he know what diagnoses his critics have? It's not like he'd ever ask them. He seems to avoid discussions with adult autistics (or adult Asperger's folks, or even "idiots savant") like the plague.
In his "no epidemic" blog essay he very narrowly categorizes the bunch of autistic adults that criticize him. He describes them as being basically just quirky and mean:
But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse."He's using "neurodiverse" as a put-down for autisic adults, apparently.
He then goes on to describe kids (Davey's kids?) who suffer from "autism," they aren't enjoying "neurodiverseness." He says real autistic kids are in extreme pain with something like a burning coal inside them. Apparently this burning coal thing happens much more often in autistic kids than in typical kids (who actually do suffer from pain, too, sometimes).
What Autism Diva wants to know is, if these truly autistic kids are unable to communicate, how is it Kirby knows what they are feeling? Further, how does he know EXACTLY what type of pain they have, how bad it is and EXACTLY where it is? Is Kirby a psychic?
He says these "true autistic" non-neurodiverse kids who can't communicate also have "rivers of diarrhea" apparently much more often than typical kids. Typical kids actually do have episodes where diarrhea runs down their legs, believe it or not. He describes autistic kids who bite their moms (perhaps much more often than typical kids, we don't have data on this, but typical kids do bite their moms sometimes). These little autistic monsters also ruin their parents' favorite carpets. OK. Get real. Like typical little kids (or even teenagers) NEVER ruin their parents expensive or favorite stuff. But this is worse, these little demons smear feces! Hmmm, even typical kids sometime smear poop. No, really they do. We don't have data on how often autistic kids do this, but apparently they don't all do it, otherwise it would probably be in the diagnostic criteria.
As long as we're categorizing autistic-like people...
What does a truly, classically autistic, poop smearing, late-speaking, tantrum throwing, pre-school disaster-of-a-human look like
when he or she
grows up?
Would that monstrosity ever be able to write as the autistic adult bloggers do? Would that awful waste of a child grow up to be able to criticize people like David Kirby?
Would that person want a cure for him or herself?
Well, here's a photo of a former poop-smearing autistic child, now autistic adult.
That's Dr. Temple Grandin. She's a university professor. She owns a home and drives a pickup truck.
Dr. Grandin doesn't usually speak about the controversy around the epidemic, but who has gone on record saying she would not take a cure if it was offered her. Autism Diva recently watched a program that was all about Dr. Grandin, they interviewed Grandin's mother, who mentioned that Dr. Grandin had smeared feces as a child.
Autism Diva kind of has a problem with parents who in a very public way give out details like that about their kids without good reason, but maybe Autism Diva just thinks kids need a little more privacy than that. Maybe Dr. Grandin doesn't care that people know that much about her childhood, maybe she gave her mom permission to give out that detail.
At any rate, Autism Diva's kid never had rivers of diarrhea and never had serious intestinal problems. Autism Diva's kid was a typical autism spectrum kid in that way. The kids with the extreme gut problems are a small minority of the whole spectrum, and it would seem that overall, autism spectrum kids may just have problems with digestion at close to the same rate as typical kids, it's just that the problems may get out of hand because the autistic kids don't feel pain in the same way and don't report pain in a normal way. Also, autistic kids apparently experience more stress and have more of the gut damaging stress hormone, cortisol, in their systems. Autistic kids usually are picky eaters, too.
Autistic kids may have a higher rate of problems with lactose intolerance and some may have less of an enzyme that breaks down some sugars. The symptoms of lactose intolerance include bad gas and diarrhea. It is unclear if autistic kids actually have food allergies more often than typical kids do. At any rate, it's far less than half of all "classic autistic" kids who have problems with diarrhea, in some studies the more usual problem with autistic kids digestion is reported to be constipation.
But all of these horrific problems if the kids that Kirby describes just MUST be a result of thimerosal in vaccines or even other some vague source of mercury, or even some other scary thing in the enviroment (he used to pretty much stick to rants about thimeorsal now he's branching out)... and whatever this evil toxic stuff is, it isn't what caused the "Asperger's syndrome" of his critics... so maybe they should just go do their Society for Creative Anachronism stuff and shut up.
But some of Kirby's autistic adult critics actually are "classic Kanner autistics" and either were diagnosed as having plain "autism" like Temple Grandin was, or would have been diagnosed as having autism had their parents lived in the right place and taken them to the right doctor. Frank Klein is one of them, Michelle Dawson is one of them, Amanda Baggs is too. Joel Smith still has trouble with speech and uses a communication device when he needs to. Patty Clark was one of them, but very sadly, she died. Kassiane (the Rett Devil) has Rett syndrome. The fact is that many people who are "classic autistic" children grow up to look something like what people think of as "Asperger's" adults.
Yes, some of Kirby's critics were just like Hans Asperger's little professors as little children. They grew up to become annoying nerdy bloggers who really, really have a strong dislike for him and his toxic rhetoric. And guess what? Some of them are parents of autism spectrum kids, and these Asperger's parents still think Kirby is unethical, untrustworthy and disrespectful of them and their kids.
Some of Kirby's critics are even regular, normal people! Shocking as that might be.
But getting back to the title of the blog "How to spot autistic adults" ... here's a little introduction to autie spotting:
This is not an autistic adult. This is a tantrumming typical child.
You should not expect an autistic adult to look like a giant tantrumming child.
Even autistic children develop, mature and grow in their ability to deal with change and frustration.
Autistic adults do not look like giant babies, either, though the mom in this photo looks surprising like some autism spectrum adult women. Note the messy hair and individualistic style of dressing.
Once again, autistic adults do NOT look or act like giant toddlers.
Autistic adults might look a bit like this young Star Trek fan, however.
This is NOT an autistic adult having a meltdown .... probably.
These could be autistic adults, but they also could be typical adults, or almost typical adults.... or adults who have had a bit too much beer at their picnic.
Hey that one guy looks like David Kirby! (just kidding)
Autistic adults can seem very much like typical adults if all you have to go on is a sample of something they have written, so diagnosing autistic adults or undiagnosing them based on what they write is pretty pointless. Many autistic adults can even pass for typical adults if you sort of tilt your head at an angle and squint and if they aren't under too much pressure and/or aren't cutting loose at a Star Trek convention.
More thoughts on Kirby and his long-distance diagnostic skills and attempt at defining "neurodiversity."
David Kirby plays the segregation game from Kevin Leitch.
Kirby: It's about "rivers of diarrhea" and "kids who spin like fireworks". from Joseph on the Autism Natural Variation blog.
Edit: See also: David Kirby and Sour Grapes over on Orac's blog.
Autism Diva
autie spotter
posted by Autism Diva at 2:48 AM
45 Comments:
Just so you know, autistic adults are showing up in institutions now who act exactly like my son used to before he was chelated. They exhibit the same type of tantrums, lack of eye contact, inattention to hunger or pain and feces smearing. These kids can not read or write either.
It is due to more mercury than your pals at neuroinsanity received to cause their milder symptoms. Your failure to learn this relatively new information has made your opinions on autism obsolete.
In my family, the feces-smearer ended up "higher functioning". Hmmmm.
Higher functioning than what?
Of course there are autistic adults in institutions, but in higher rates than in the past? Doubtful, considering that overall numbers of institutionalized developmentally disabled person are either stable or dropping slowly. And considering that in the early 80s Shah, Holmes and Lorna Wing went to a mental handicap hospital and found that 38% of the adults there fit the criteria for what is now called the autism spectrum.
Perhaps Mr Kirby could coin a new acronym (for his purposes) for those adults on the spectrum...Neuro-A-typical..NA which in the data circles I am ensconced in also means 'Not Applicable'. Just as when I encounter a group of data that I don't care about, I code it NA; he can do the same. Does that mean as soon as my child becomes a teen, she goes from AS to NA? Hope not...
On to my one note samba, we'll let the researchers decide whether autistic kids suffer more pain and gut issues than the general populous. To pass off biting, head banging, chronic diarrhea, and self injurous behavior as 'typical' without investigating the 'whys', is doing that 'small minority' a disservice. If my NT kids were exhibiting these symptoms, they'd do a full work up; the AS get the N/A response from doctors as these are 'typical' AS behaviors.
Bill,
N/A means not applicable. Autistic adults who started out like any autistic child and end up being called Asperger's are very much the point of everything ever discussed about autism anywhere on the planet. They ARE the application.
If we understand that some autisics develop into quite "funtioning" people, and some have minds that develop into shockingly astute ones, then we will know that much of what people are calling CURE and charging people for, is really normal for some autistic kids.
They "cure" themselves of infancy and toddlerhood and young childhood, they grow, they learn, not because of a drug or vitamin, and sometimes in spite of a drug or vitamin.
There will always be "retarded" autistics, just like there will always be "retarded" low IQ non-autistics.
This is not part of a worldwide plot to destroy humanity. It's how it is. It's how it always has been.
If John Best Jr. got stuck (in his view) with a retarded autistic child, that's just shocking for the safety of the retarded autistic child. But not the result of mercury.
Someone was bound to end up the parent of a retarded autistic child in the 1990s and that child was bound to have been vaccinated... now all you need is the Internet and conspiracy theories to give it all "meaning."
Notice Fore Sam (John Best) doesn't try to give any citation for his assertion about atuistics in institutions today. They may be retarded autistics, and they may be assumed to be retarded and totally are NOT, but no one is giving them a chance to communicate their thoughts. Ballastexistenz used to be in institutions. Sue Rubin was thought to be retarded. We don't know if Sue Rubin smeared feces... we hope her mother is discrete enough not to tell everyone if she does.
Anyway, the conclusion of the argument is: "Temple Grandin."
Autism Diva forgot to add. NA means "narcotics anonymous."
This post has been removed by a blog administrator.
No more abusive comments from you, Fore Sam. You have a whole abusive hate-speech filled blog to dump your toxic words in, go to it.
It's always good to see this shoddy excuse from those who aren't capable of defending deranged positions.
I think that everyone really does have a point, but are guilty of overgeneralizing what they know of autism.
I am not autistic but surround myself with autistic children and teens.
I have seen the child with the burning coal of pain, constantly aggressing agains themselves, but I have also seen the child that just needs a bit of help learning how non-autistics communicate so they to can be a succesful,independent parts of society. I don't want to misspeak, that "bit of help" can be hard and a tough road, but when getting to know each person as an individual that has different strengths/weaknesses and by building on these strengths many many many people will see these autistic adults as JUST adults.
To pass off biting, head banging, chronic diarrhea, and self injurous behavior as 'typical' without investigating the 'whys', is doing that 'small minority' a disservice. If my NT kids were exhibiting these symptoms, they'd do a full work up; the AS get the N/A response from doctors as these are 'typical' AS behaviors.
I'm curious as to what a "full work up" would entail.
For the record, a son of mine who is NOT autistic played with his poop occasionally as a toddler, and my own mom has vivid recollections of me doing the same as a two year old. We never received a "full work up" of any sort. What a gyp!
My autistic kid banged his head, smeared his non-diarrhea poop, and occasionally bit me and other family members. He was given some fairly routine blood tests that did not indicate any physical or known genetic anomalies. He has since outgrown each of these behaviors. Shocking, I know.
I've never heard chronic diarrhea described as "typical" in a child with autism. Could you point me to a source for this information? I mean a valid source, not just personal experience with your own child.
foresam-you seem very angry. Have you spoken with a therapist? Attacking others view will not get you anywhere. Disagreeing and attacking ARE very different. If you disagreed in a manner worth reading many people may acctually listen and also agree with you too. Good luck!
Gotta say, loved this entry! The pictures of the adults falling off the merry go round were great--these could have been the college kids who frequent our local grocery store in the middle of the night!
As for the whole diarrhea / poop stuff, I think we should all read the very wonderful book "Everybody Poops". I've read it to my kids, maybe it's time to break that one out again!
Kathleen; No, I haven't seen a therapist. Do you think it would help? Do you think a therapist could show me how to convince insane people to be quiet and seek the help they need? I think a large net would work better but, if you know such a therapist, I'd be willing to listen.
a mom who cares:
"Typical kids actually do have episodes where diarrhea runs down their legs, believe it or not"
Just reacting to what Diva wrote...
Mainly, I would say a full workup as meaning talking it through with the child; finding out what parts may be hurting; perhaps a psychological test for both the child AND the parent to find out why the child is lashing out.
Before you jump on this, it is provided the child is able to communicate (2-3 year old may not be able to get detailed with pain). I am also not suggesting we need to investigate you to find out why your child is acting out. I am merely suggesting that there MAY be physical issues that are not being treated because the child is non-communicative; pain tolerance may be high and 'traditional' reactions to pain might not be outwardly visible.
I believe I have heard of several autistic adults comment that they were lashing out with some behaviors as a frustration; to pain, to the environment, to dealing with the way the environment assaults their senses.
To turn the classic argument back at you, personal experience does not make scientific fact; your child not having a physical condition does not prove that all children do not. Nor does it dissuade me from making sure my daughter is not suffering needlessly...
Margaret Bauman described the situation very well, autistic kids are sent away from the doctor with things like acid reflux hurting their throats (badly) without the doctor even trying to check. There are some doctors, though we don't know how typical it is, who think every problem an autistic kid has is just an old-fashioned temper fit, or worst case scenario they think "Who cares? it's not normal anyway..."
Bauman gave examples of kids with unknown to their parents physical problems who were lashing out.
The problem is when fools like David Kirby come along and redefine autism as being gut pain (Kennedy did this in an earlier Huffpoof blog entry)... therefor if your kid doesn't have explosive diarrhea and you aren't blaming vaccines... your kid isn't autistic.
There's this new thing going around, Dr. John Green III (DAN! flake) says he's finding Arnold Chiari malformations in a surprising number of autistic kids (takes an MRI of the lower brain to diagnose)...
What if people start saying that THIS now, THIS, THIS is the true autism, and any kid who isn't suffering from an Arnold Chiari malformation isn't one of the real autistics that are part of this new breed that were made autistic by big pharma.. big chem... whatever... all other parents and adults can just SHUT UP because they don't have REAL autism.
Forgot:
Google "margaret bauman" and you should see Autism Diva's blog about her visit to the MIND... there's a description there about Bauman and her sending kids to Timothy Buie and finding a rare subset of kids actually have mitochondrial disorders and they are much helped by some OTC type supplements in a special mix she has compounded... she also says she has NEVER cured an autistic child.
Fore Sam, go away. We were really NOT sitting here wishing we had someone to play the troll in this comment section. Thank you.
fore sam i don't wish you go away, i just wish you had a goal of eduacating yourself and others instead of attacking others educated oppinions. I hope you keep yourself open to more education and to other peoples oppinion. We all have something in common we LOVE SOMEONE WITH AUTISM!!!! Please don't attack and have anger for those who don't think like you; we all have a goal in common. To help/support someone.
I read David Kirby's post the other day and wondered how others at the Hub would respond. I enjoyed your response, perhaps because it was how I imagined I would respond if I could keep a coherent thought going for more than a flash at a time. (it's a insomnia/fatigue thing)
Apparently I did some poop smearing, but "that stopped real quick" according to my Mom.
Anyway, thanks...
I'm am Aspie and I'm a Dad and I'm on the Hub but I'm posting here uncloaked...
About the Arnold Chiari thing, that's certainly not something that is exclusive to children with autism. In fact, a lot of people probably have a type of Chiari malformation and don't know it because they have no symptoms, therefore no need to go to the doc for an MRI. The only time they are caught is either by accident or because symptoms are prevalent enough to warrant an MRI. Type I is pretty common, type II less common, and Type III pretty rare.
About the reflux, I can personally attest to this being passed over in my young son. Because he does have some communication issues, despite a very fancy communication device, it was very hard for him to tell us exactly what was going on and what he felt. Although the pediatrician passed over this as 'being an autistic thing', others who work with him found that he had a very serious problem with his esophagus. My biggest pet peeve is for a doc to play off actually examining a child because he or she is autistic.
Regarding doctors who disregard medical symptoms in autistic children The worst case I heard was from UK psychologist Lisa Blakemore-Brown. They did not believe the child had a real gut illness. Mum was accused of being Munchausens. The child was taken into care. The symptoms persisted. Now the child relies on a feeding tube.
Kathleen; If you love someone with autism, you should help them instead of letting them rot.
Fore Sam.
Further comments by you here will be deleted.
Anyone who wants to converse with the deep and thoughtful Fore Sam, can go to his blog "hating autism," though Autism Diva suggests that you don't. It's pretty awful. Fore Sam enjoys degrading autistic people and their parents if they don't chelate. Because he thinks all autism is is mercury poisoning.
Diva,
On Page 16 of her book "Emergence: Labeled Autistic" Temple Grandin writes: "... Normal children use clay for modeling; I used my feces and then spread my creations all over the room. I chewed up puzzles and spit the cardboard mush out on ..."
Hence, no reason to blame her mom for disclosing publically such "big secret".
Ophidious,
Thank you for clarifying that the information came first from Dr. Grandin herself. Autism Diva did say that maybe Dr. Grandin gave her mother permission to talk about the smearing... though, sculpting and then smearing and simply smearing are two different projects... hmmm.
Though Autism Diva knows of a family where three young siblings including one who was on the spectrum had an episode where treated the feces of one child like paint, and it was all a game to them. These were not Autism Diva's siblings.
One wonders if the kids who smear were supplied with art supplies if feces would still be as attractive... maybe it still would be... more research in this area is needed obviously ... :-)
Speaking of non-experts diagnosing victims of child abuse as autistic. This is from a story about child found wandering the beltway in Indianapolis.
http://www.indystar.com/apps/pbcs.dll/article?AID=2007701040433
concerning the mother being arrested for felony child abuse
"In court documents, police said Dyer's apartment was in disarray, her daughter was wearing a diaper full of feces and there appeared to be feces or dirt in the children's bedroom.
But finding feces on the wall of a home with an autistic child would not be that uncommon, Pieples said.
"When you hear there was a child found in a house with feces on the wall, you have one horrible picture," Pieples said. "But if you are someone within our community, you think, 'That poor woman.' "
Dana Stewart is a speech and language therapist who works with children with autism at the St. Vincent Pediatric Rehabilitation Center. She said neither the desire to escape from a home nor playing in feces is among primary identifying characteristics of autism."
Subsequent stories about the child and mother claim that he has never been evaluated and/or diagnosed for ASD. I've posted the story and my own comments about it on my blog. Just thought the discussion about "poop smearing" tied in. I have known plenty of NTs and autistics that have gone through a poop smearing phase.
David Kirby and Sour Grapes over on Orac's blog.
Orac mentions an upcoming debate between Kirby and Arthur Allen, author of a new book on the history of vaccines. Vaccine: the controversial history of medicine's greatest lifesaver. The debate will be in San Diego, California.
Dear Ms. Diva:
Orac's statement on his blog:
"David Kirby, who, through his book Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, was one of the two men most responsible for publicizing the pseudoscientific scare-mongering that claims that mercury in thimerosal, the preservative that was until late 2002 used in childhood vaccines, causes autism."
I disagree. The IOM is much more responsible than Kirby for fanning the flames of this controversy. Orac needs to answer to the IOM Report October 2001 (link below) which says any link between thimerosal containing vaccines and autism in unproven. The IOM goes on say (and I am paraphrasing) that the concept of a link between thimerosal containing vaccines and neurodevelopmental disorders is biologically plausible.
Link to IOM October 2001:
http://www.iom.edu/Object.File/Master/4/134/Thimerosal-FAQ.pdf
So why has Orac got such a hard on for Kirby, when the IOM was plowing this fertile field of quackery long before him? Orac is WRONG! It's not just "two men" peddling the "pseudoscience"-- he left out the IOM.
Another icon shattered. Imagine those dang IOM types sitting around, chanting witchcraft, and practising "pseudoscience." I wonder if they were eating mescaline, or maybe licking toads, before they come up with this report.
"Biologically plausible." IOM-- part of the National Academy of Sciences.
Fair Disclosure: the only problem with my wonderful child is that conventional, evidence based, board certified AAP docs keep telling me my child is PDD-NOS, or autistic, or some such shit. Until they told me that,I had no idea he was anything other than a kid. I would hope that every parent has the joy of having a child as wonderful as mine, and they can take their labels and shove 'em deep and hard where the sun don't shine.
Braced for the flaming--
Cheers-
bvicator,
Autism Diva can not in any way speak for the IOM, but she can make some very rough, inexpert guesses at why they said that the thimerosal hypothesis was plausible. Actually, Autism Diva doesn't care about this enough to go check what they said in context so going on the idea that they said the specific vaccine thimerosal hypothesis was plausible, AT THAT TIME they were facing some new research funded by the likes of SAFE MINDS and as well as a small group of VERY ENRAGED (crazy, if not stupid) parents insisting that their children decended into the hellish abyss of autism practically within minutes of being vaccinated, blah blah... but even if those things weren't the case, scientists are loathe to make statements like this or that is impossible. You or Autism Diva may know enough about a thing to say that it's practically impossible or might as well be impossible or is just impossible, but we are not scientists.
They say everything differently than lay people do.
This is one reason why it's so unfair for a scientist to debate a litigant, the lawyer giving advice to the litigant will advise that they pull no punches, exaggeration is totally fair game. Lying is totally ethical to most lawyers if they are in pursuit of a cash payout... so Kirby et al can say any heinous thing they like and then quote the scientist who is being ultra cautious and not being willing to go on record as having entirely ruled something out that could conceivably happen though it has never been shown to have happened, ever.
So, IOM=Good.
Kirby and Kennedy = lying creeps ... it's very simple.
Also, the mere statement by the IOM would have been read by some, but the whole book tour and all the press given to Kirby and Kennedy gave the thimerosal lie a much wider audience. So Orac is totally right, and you're criticism was off base. Is that flame enough?
Dear Ms. AD:
Flame? Hardly. Thoughtful and to the point? Certainly.
Thanks for being gentle with me (again).
Your fan-
Cheers
I have to say, I really enjoy reading this blog. the insight and view points are quite refreshing and there is always a spot I have a giggle or too (as in the spots 'just kidding'). the pictures of the adults really puts things into perspective.
there is more to autism than diarrhea or intestinal issues. my child did have chronic severe diarrhea that would not stay contained in his diaper, the longest period of days in a row was 13 days. it actually was like a river flowing..... he has irritable bowel syndrome which can happen without autism. without any medical treatment, the chronic diarrhea stopped. in coincided when he began finding words and screaming more (being expressive) so hindering a meltdown can in fact cause bowel issues. my son never stopped talking all of a sudden, he just never ever started :) in Kirby's statement, he never included the non- sleepers, of which my son also is and more so an issue than diarrhea ever was. my son has hardly slept all night since he was born. maybe 6 times and of those 6 times, nothing pin-pointed what was different in order for me to duplicate the day/night for this to be a reoccurring occurrence. I'd like to know how one can determine a non-verbal child crying in the middle of the night is due to pain, and not simply a nightmare? my son at age two and into 3 had horrible night terrors and it did take me a while to figure out that's what it was. the longest a night terror lasted was 2 hours, yes, 2 hours of non stop screaming and there was nothing I could do to comfort him. in fact, my presence was the worst thing, but who knew. I'd also like to know how any one person can predict any child's academic abilities? I know many parents who have non-verbal children, but they can read and write and taught this to themselves. I hate to say it, but learning disabilities can happen without autism. I have watched my son spin and when he stops, he never falls over from being dizzy. I've often wondered what about him makes him not fall over?
my kid has experienced most if not all of what Kirby expressed, but unlike Kirby's 'beliefs', I don't think it something else. I know it's autism, and I don't know what caused it. Kirby in a sense is correct on one thing. mercury is poison and if you Chelate and the child seems 'cured', they never had autism to begin with. what the child had was mercury poisoning. for the rest of us, our children have autism, lifelong.
if there ever was a cure, think about it. would that cure take away all the issues Kirby outlines? and let's say it did, or took away most of those issues. does he think a child after a cure will just start talking? reading and writing? these children would still need additional therapies to adjust to a life they do not know, due to a cure. there are ways to help a child than a cure. a cure might be easier, I have had to do a lot of hard work with my son along with interventions. also, without a cure, there are things that an help and many to choose from. not one size intervention fits all either, so you keep trying until you find what works with 'your' child.
who ever said parenting was easy. people with typical children (of which some people dream as their life) those parents will go through what we are, but they have to wait until their child is a pre-teen and teen. teens never listen, throw tantrums to get their ways, never listen to a thing you say to them, spend no time with parents or pay attention to when dad comes home and more than likely don't want to be around when dad gets home, dress funny and have hair doo's all a-whack, some never bathe or comb their hair at all, eat a ton of junk food, repeat odd phrases and some cant control swearing, grades drop, they feel alienated from their parents and peers...... where's that cure? where's the difference? I'm going through this is toddler years, and survived.
my main point amongst all of this, is acceptance. Temple needed a squeeze machine, some kids need to spin. if a child doesn't talk, that does not mean their IQ is zero or that they cant retain info. diarrhea doesn't always last a life time. some kids started talking at age 14, out of the blue. parents need to be patient, work hard and not expect Kirby to answer all the pending questions of things he could never know about each child with autism. all children with autism progress, but all at different rates. to assume they wont progress or stuck in limbo is just not fair to these kids.
thanks for allowing me to share
Mom in MN
Mom in MN said, "if there ever was a cure, think about it. would that cure take away all the issues Kirby outlines? and let's say it did, or took away most of those issues. does he think a child after a cure will just start talking? reading and writing? these children would still need additional therapies to adjust to a life they do not know"
That statement made me instantly think of a the man Oliver Sacks describes in his book, "An Anthropologist on Mars". The man who had cataracts from a very young age and was essentially blind, only to have the cataracts removed as an adult and become a person who sees.
Quoting from the book, "In the newly sighted, learning to see demands a radical change in neurological functioning, in self, in identity. The change may be experienced in literally life-and-death terms. Valvo quotes a patient of his as saying, 'One must die as a sighted person to be born again as a blind person,' and the opposite is equally true: one must die as a blind person to be born again as a seeing person....Though blindness may at first be a terrible privation and loss, it may become less so with the passage of time, for a deep adaptation, or reorientation, occurs, by which one reconstitutes, reappropriates, the world in nonvisual terms. It then becomes a different condition, a different form of being, one with its own sensibilities and coherence and feeling" (pgs 141-2).
Now obviously autism and blindness of any kind are two totally different things here--but the cure concept is the same, it's not as if a magic veil disappears and one day you'd be autistic and the next you'd be walking around doing all things NT. One would have to relearn the world from the NT perspective just as the man in the case had to relearn the world as a seeing man, things his brain couldn't always recognize through his eyes as he had through his hands...I can't imagine it would be so easy, so hunky dorey, just as it was not like flipping a switch for the man, 'Virgil', to become a seeing man all of sudden.
Sorry for the rambling, just my thoughts!
the cure concept could be the same and blindness is a good comparison. both disabilities use senses differently but the blind person is thought to be cool and well-adapted. the child with autism is thought to be odd and must be changed. (I seen that Virgil movie too, didn't read the book though.)
I have been rambling for years to think just a little past the dreams of a cure, to after-the-cure. a cure could promote the worst of meltdowns in the person/child just trying to adapt. it could possibly make the child more withdrawn than they were prior. it could possibly throw a whole body into shock and regression. there is no magic wand to wave after a cure that all things would become typical, age appropriate, no medical issues and acknowledge family members (the parents would still be required to do a lot of work building those things) no scientific evidence (only theory) of what the outcomes would be and since all kids are different, all reactions to a cure would also be different. and to the thought of genetic dispositions, if a cure involved manipulating genes in a already born human being, no cure is worth that. we wont be worrying about autism, it'll be Frankenstein Syndrome.
Every couple of years, often at my birthday party at my parent's house, I get reminders in story form as to why I should be humble. One includes a feces smearing episode while at a babysitter's house. Left alone for just enough time to get in trouble, a leak in my diaper became an opportunity to... fingerpaint. So here is another non-autistic person with a history of feces smearing.
Mom in MN, I enjoyed your comment about teen-agers. ;-) I must say, though, that I felt blessed to have a spectrum teen -- it was much easier, in many ways, than what other parents went through with non-autistic teens.
Great post, Diva, those pictures are just what I think of when I hear people say that adults are nothing like their kids. Yeah. Hello?
Anne said...
Mom in MN, I enjoyed your comment about teen-agers. ;-) I must say, though, that I felt blessed to have a spectrum teen -- it was much easier, in many ways, than what other parents went through with non-autistic teens.
Yes, there is that - and it's for much the same reasons as we worry about our kids: we know they're not going to take the typical path. But let's not underplay the stress of simply wanting them to be happy adults, and not knowing how or when they'll get there.
I am new to blogs, so please forgive any errors in this posting. I am seeking some info... can someone please help me? I am a parent. My children do not have autims. Recently, I left a job working for a company which supplied services to families with children with autism. I left for several reasons. One of which was a horrible feeleing I had when speaking with these parents. In your blog, last June, you have some refrenence to Forrist Lytehaause and NCD Zeolite. My question is this... has anyone had any negative experiences with this product... or more importantly, Forrist Lytehaaus? Earlier, I mentioned that I am a Mom. My heart goes out to parents with children with any illness or condition. I did not like what I experienced in this job. Please contact me at denese.oster@comcast.net.
I'm writing here very late in the conversation, but I wanted to mention something in reference to this biting-mom business: Charlie was bitten about a half-dozen or so times by another child (younger then him) in the daycare he was in. But the child with "problems" was.......
Thanks for all the comments, Mom in MN, robster, Ann and Russell Brown (and anyone else Autism Diva missed). The comments on raising typical teens rang true for Autism Diva who raised one ASD teen (easy) and one typical teen (hard). Both of Autism Diva's teens were easy compared to some teens, but the typical teen was waaaay harder to get through the teen years (and probably more expensive).
Denese, Autism Diva has no dirt on Forrest Lytehaause, other than he appears to be selling a bogus chelator which seems to be merely ground up zeolite rocks suspended in water. The worst experience a person is likely to have with zeolite is a loss of money in buying the stuff, in Autism Diva's opinion.
Kristina, that's awful.
Autism Diva, I can not tell you how many parents I believe that spoken to who were believed they were promised things that just did not happen. These people are desperate to ‘cure’ their children. I one of my daughters were ill, I would do anything to help them. In addition, the doses recommended on his website are in my opinion, absurd. I recall speaking with parents whose children had such horrific headaches and other side effects, that I wonder why child protective services are not getting involved. I can not tell you how many times I drove home crying my eyes out. Every night, I walked home and hugged my kids. They are teenagers… they thought I was the weirdest mom in the world…. There are several other issues that I would rather not discuss in a public forum. Are there any parents or authorities who would be interested in doing something about this guy?
Denese
denese,
you can contact the FDA or the FTC
See this blog for more information:
here.
You can contact the local authorities where you live, police, attorney general, better business bureau, or talk to a local doctor and get his or her advice.
You can join autismweb.com/forum and post there, because there are parents there who use the stuff on their kids. Or you can join the autism-mercury Yahoo! group and post your concerns there because there are parents there who use the stuff. There are probably other places where the parents who use this stuff on their kids hang out and you could share your concerns there. You might not want to use your real name, though.
That's all the suggestions Autism Diva has for you.
Do keep in mind that we do not have easily accessible statistics as to the number of Autistic adults in "institutions" due to the fact that over 75% of children and adults with developmental disabilities of any kind are no longer being admitted to such places. Alternatives like specialized family support services, vocational treatments, and a myriad of residential assistance options have taken the place of institutions. And thank god for that. That being said, attempting to apply the number of autistic adults in institutions to an estimate of the number of people diagnosed would lead to a highly inaccurate result.
Autism Diva,
No reply to my comment? Exactly as I expected. I think you are a pharmaceutical company lackey. Your agenda is transparent and your mind is completely closed to any theory that questions the opinion of the regulatory agencies or pharmaceutical industry's ethics. Which company do you work for? Feel free to get back to me on that...not that you will.
Truth in Reseach writ:
"Autism Diva,
No reply to my comment? Exactly as I expected. I think you are a pharmaceutical company lackey. Your agenda is transparent and your mind is completely closed to any theory that questions the opinion of the regulatory agencies or pharmaceutical industry's ethics. Which company do you work for? Feel free to get back to me on that...not that you will."
Listen sweetheart,
you left one comment here on this blog. That is where Autism Diva responded to it.
Take your whiney, pathetic and baseless accusations elsewhere. Plenty of the "mercury parents" know who Autism Diva is. If you want, call up Rick Rollens and ask him who Autism Diva is and if he thinks she's working for "Big Pharma" OK? Even Lenny Schafer is smart enough not to make that pathetic accusation.
And please, do NOT comment here again, you are obviously impervious to facts, are looking for a fight and willing to push the limits on slandering someone you know NOTHING about. Expect that further comments of yours will be deleted, unless they actually become intelligent and add something to a discussion.
Links to this post:
Create a Link
<< Home