It’s Official: Pediatricians + Autism = Clueless
By Kelli Ann Davis
According to a current article in Pediatrics, “Medical Homes for Children With Autism: A Physician Survey” (HERE), most pediatricians report a “lack of self-perceived competency” in treating children with autism; yet ironically, the premise of the article states “primary care physicians can enhance the health and quality of life of children with autism by providing high-quality and comprehensive primary care.” [Question: How the hell can that be possible if they don’t know what they’re doing?]
Of course as most of you know by now, the term “medical home” is a key component in a “bill” poised to be introduced by Senators Durbin and Casey (HERE). What you may not know is the AAP will get to determine what constitutes a “comprehensive approach to care and coordination” for children with autism:
Definitions: (8) MEDICAL HOME.—The term ‘‘medical home’’ means a concept or model of care delivery that includes an ongoing relationship between a provider and a patient, around-the-clock access to medical consultation, respect for a patient’s cultural and religious beliefs, and a comprehensive approach to care and coordination of care through providers and community services, as defined by the American Academy of Pediatrics.
In my opinion, there’s no better way to gauge AAP leadership than to look at its members. And by the looks of this article, pediatricians are clueless and they know it. Here are some choice highlights:
• Autism included all the autism spectrum disorders: classic autism, Asperger syndrome, and pervasive developmental disorder–not otherwise specified. We compared children with autism to children with other neurodevelopmental conditions and those with chronic/complex medical conditions. Examples of neurodevelopmental conditions listed were: hypoxic ischemic encephalopathy, cerebral palsy, mental retardation, and attention-deficit/hyperactivity disorder. Examples of chronic/complex medical conditions given were: congenital heart disease, chronic asthma, early cystic fibrosis, and diabetes.
AAP Reality Check: “Autism” IS a chronic and complex medical condition. If you can’t get that basic fact correct, is it any wonder your docs are confused and parents are distrustful?
• Consistent with the parents of children with autism who expressed low confidence and dissatisfaction with their children’s physicians, physicians in this survey reported feeling less competent providing primary care for children with autism compared to children with neurodevelopmental conditions and chronic/complex conditions.
AAP Reality Check: See reality check above just in case it didn’t sink in the first time you read it.
• Innovative models of coordination and reimbursement are needed, particularly to meet the complex needs and high medical costs of children with autism.
AAP Reality Check: I hope you don’t call in the same “experts” who devised this survey which separates “autism” from “neurodevelopmental, chronic and complex medical conditions” when you decide to develop those innovative models.
• Proposed approaches include care teams and specialty medical homes that collaborate with primary care physicians.
AAP Reality Check: Reread the survey. What part of “incompetent” don’t you understand?
• Similarly, in another survey, three quarters of parents of children with autism expressed a lack of confidence regarding their child’s physician.
AAP Reality Check: Even if you do devise a new, innovative model, good luck on getting parents to participate because it looks like 75% aren’t going to touch you with a ten-foot pole.
• Perhaps related to family trust and satisfaction, physicians reported that families of children with autism were more likely to be “skeptical of vaccines and traditional medicine” and noted these as greater barriers to caring for children with autism than with other medical conditions.
AAP Reality Check: Duh! Wonder why?? Maybe because we saw our children regress after vaccines and we’re recovering them with non-traditional approaches??
• Parents of children with autism and conventional medicine have sometimes been at odds in areas such as the prevalence of autism, its etiology, and the search for specific medical interventions in autism.
AAP Reality Check: And you wonder why we aren’t supporting an AAP directed “medical home model” in the current Durbin/Casey bill.
• The American Academy of Pediatrics advocates for family centered care, including sensitivity, respect, and open communication when confronting differences in opinions around treatments, vaccines, or philosophy.
AAP Reality Check: Good luck on rectifying the differences. And instead of focusing on “sensitivity, respect and open communication” (it hasn’t been working so far) I’d suggest you put “medical competency” and basic definitions of autism” on the top of any future “to do list”.
• Surveys suggest that over half of all children with autism are being treated with Complimentary Alternative Medicine (CAM). CAM may be particularly challenging when a physician believes the treatment is not in the best interest of the child, often because of a lack of research or the potential for adverse effects.
AAP Reality Check: Did you get the first half of the statement: 50% of parents are using CAM. Do you think we give a “flying crap” what YOU think when we are successfully recovering our children??
• Practice parameters and organized medical groups must continue to address the challenging subjects of both CAM and family skepticism of vaccines and traditional medicine. Physicians should continue to collaborate with families to enhance family trust and satisfaction. Such efforts may result in improved parental satisfaction and medical home care and, ultimately, enhanced health and quality of life for children with autism.
AAP Reality Check: Trust and satisfaction?? In your dreams.
Generation Rescue will continue to fight ANY “medical home model” that benefits organizations like AAP who, quite frankly, are clueless on how to treat our children. We always knew it but it sure helps to see it all there in black and white.
Thanks Pediatrics. This article couldn’t have come at a better time!
Kelli Ann Davis is the D.C. Political Liaison for Generation Rescue
It's autism life threatening?? Good question. Let's see: most autistic kids cannot safely cross the street by themselves even if they are 10 years old, plenty of them need full attention when playing around swimming pools, lakes, rivers, oceans or even waterfalls so they don't jump in and drown, and a good percentage have to be watched all they long, 24-7, 365 days a year so they don't escape their home and run into the woods where they can die from starvation, cold, etc., and let's not even talk about their inherent inability to defend themselves from molesters, since most can't even tell they have been molested in the first place and much less tell an adult about it. You can read reports about all these almost every day if you look for them, I've read plenty myself on the Schafer autism report for the past few years to keep me awake at night. To top all these, and as pointed out by many comments here, many kids with ASD will have life spans due to their screwed up metabolism.
And all of this caused by the current vaccine schedule pushed so heavily by the AAP that it should belong to the realm of DOGMA rather than medical science. Measles, rubella and chicken pox all put together are a joke compared to autism, both in number of children affected and the consequences of these diseases.
Posted by: WE SHALL OVERCOME | March 09, 2009 at 04:37 PM
Hey, TJ, did you read all these comments? Did you learn anything new?
Posted by: Twyla | March 08, 2009 at 11:02 PM
TJ lives in la-la land where autism is a result of crummy parenting and badly-behaved children. In his world, our kids deserve less compassion than a child with a defective heart or cancer. If only I COULD put my son under the knife and surgically remove his severe immune dysfunction and inability to communicate- I'd do it in a heartbeat. I live in terror, abject terror DAILY about my son's inability to understand that an oncoming car is something that will kill him. I live in constant fear that his hundreds of seizures a day will come back (GONE now thanks to biomed and diet). TJ, think a little before you open your mouth. You'd have less people hating you.
Posted by: Julie Swenson | March 08, 2009 at 08:44 PM
Another Great Article Kelli!
TJ, I wonder what you would call my oldest son, when he was admitted into Childrens ICU 24 HOURS after getting a mild clear runny nose, with Atelectisis (sp?), which is a collapsed lung! All stemming from his Vaccine induced Asthma, 4 different 'allergy' and 'asthma' meds, along with his 3 times daily 'maintenence' nebulizer treatments?
I guess a collapsed lung in a 3 year old is not life threatening? You are SO underinformed/misinformed to think that ANY childhood disease/illness is worse than the other, or that Autism is simply 'misbehaving'...Shame on you!
No one will ever take you seriously if you continue to spew such ignorant and naive and plainly stupid remarks...you cant possibly think that the way to gain respect of your opinon or even the possibility of someone to even consider your train of thought with such disrespectful nonsense????!!!
By the way, my oldest is now FREE of ALL of his prescriptions for 'severe allergies' and 'asthma'...since starting simple biomedical treatments and altering our diets, the only thing he occassionally needs is some reflux medications, which we are still trying to figure out what the offending food is...however, he no longer is listless all of the time, he can BREATHE without nebulizer treatments, or any allergy symptoms. Now, when he catches a cold, its a 'typical' cold, ending in 2-3 days, no meds needed, no nebulizer treatments, where as before, most colds ended him admitted to the hospital...
Hmmm..think before you speak/write.
Angie
Mom to Ethan, Alex, and Megan
PS, sorry if this is written weird, I am typing fast and furious so that I can get my point across without blowing up and becoming as disrespectful as TJ has been...and for that to happen I am having to type and post rather quickly as I feel my blood beginnig to boil! ARGH!
Posted by: Angie | March 08, 2009 at 07:55 PM
Adding:
Great article Kelli!
Posted by: kathleen | March 08, 2009 at 07:18 PM
TJ,
For you information autism can be very life threatening. I personally had to pull my five year old son out of a river. This happened while we were on a nature walk last summer, he bolted from me and jumped in over his head. I jumped in as he was sinking and yanked him up by his shirt. He absolutely would have drowned.
He's drawn to water. Water is like a magnet to him. He's also run into the street oblivious to the danger. Autism makes our kids prone to risky behavior and can be just as deadly as heart disease.
Posted by: Sarah | March 08, 2009 at 05:31 PM
If the AAP is sincere in the desire to acheive best outcome treatment for autism in their medical home model, they must
1) Recognize autism as an indication of disease and strive to determine the cause for the individual affected.
2) Recognize that an ongoing disease process or residual symptoms may respond to specialized treatment.
3) Strive to respectfully work with caregivers regarding the evaluation and management of complementary alternative therapies and acknowledge that science has yet to validate or invalidate treatments for the individual in front of them for care.
4) Recognize that cognitive symptoms can mask pain and that a thorough, medical work-up is required to find potentially treatable conditions and provide appropriate referrals.
5) Recognize that a cookie-cutter approach is not appropriate. Any treatment should have child centered goals and an expectation for symptom improvement.
6) Insist that available funding to develop therapy providers be multi-level and measure outcomes of implementation and knowledge of trained providers who individualize child-centered goals and therapy delivery. Interventions provided should be developed, measured, and adjusted based on the response to intervention. Interventions provided should be in sufficient quantity and have a plan for generalization across settings and people.
Even if the physician provides appropriate care coordination for therapy referrals, the reality is that the availability of front-line providers (Behavior Analysts, etc.) do not exist.
Posted by: I wish autism only needed care coordination | March 08, 2009 at 05:18 PM
"Such efforts may result in improved parental satisfaction and medical home care and, ultimately, enhanced health and quality of life for children with autism."
What does this mean?? They'll bring the vaccines to our homes? Thanks but no thanks. I'll stick with my crazy bio-med treatments and DAN..call me nutty. And if the AAP even thinks that I am vaccinating my youngest toddler after watching what happened to his big bro, they can take a flying leap into whatever body of water suits them best.
I believe that by putting autism in a category different from traditionally 'treatable' conditions(with prescription drugs, of course) like diabetes, the AAP is attempting to further discredit the biomedical movement by stating (quite passive-aggressively, I might add) that autism not only cannot be treated, it is a non-recoverable condition.
I would LOVE for them do commission a study on the health and neurological improvement of those 50% of children using CAM methods! OOh, that would be almost as scary to them as a vaccinated vs. unvaccinated study. If they acknowledge that 50% of autistc families are indeed using such methods, how can they POSSIBLY state there is insufficient information on it? There's your base for an excellent study on biomedical efficacy, AAP. Go study those kids and get back to us on the 'ineffectual' CAM methods. Not going to do it? Yeah, I wasn't holding my breath.
Well done, Kelli!!
Posted by: Julie Swenson | March 08, 2009 at 02:09 PM
"Physicians reported that families of children with autism were more likely to be 'skeptical of vaccines and traditional medicine' and noted these as greater barriers to caring for children with autism than with other medical conditions". Oh, wow, so there are actually a bunch of effective mainstream medical treatments for autism that parents are refusing because of skepticism? That is inconsistent with everything I ever heard from every parent who says that their traditional doctors had nothing to offer, other than risperdal and prozac.
"Innovative models of coordination and reimbursement are needed, particularly to meet the complex needs and high medical costs of children with autism." And how about innovative treatments? And an innovative understanding of what causes autism?
It's scary how good this all must sound to someone who does not know much about it.
It's frustrating that although the AAP is acknowledging that:
- there is a crisis in trust,
- parents don't have confidence in their mainstream doctors' ability to treat their kids with autism,
- doctors don't have confidence in their ability to treat these kids, and
- many parents are turning to "alternative" treatments,
yet, rather than considering what could be learned from DAN!, the issue is summarized as "Complimentary Alternative Medicine... may be particularly challenging when a physician believes the treatment is not in the best interest of the child, often because of a lack of research or the potential for adverse effects."
"Physicians should continue to collaborate with families to enhance family trust and satisfaction." I fear that this collaboration will be like that in the AAP's articles about convincing parents to vaccinate, which boils down to, "As your physician, I will pretend to really listen to you, with a look of genuine concern on my face, and I will use a very kind voice, but nothing you say will have any impact whatsoever on what I think and believe."
TJ, autism is a spectrum, and apparently you are only considering those mildly affected by autism. Read the stories told by mothers such as Jenny McCarthy, Katie Wright (in the intro to Dr. Bryan Jepson's book Changing the Course of Autism) and Liz Burt (in David Kirby's book Evidence of Harm). As others have amply pointed out, your comment is based on ignorance.
Thanks for this article, Kelli Ann!
Posted by: Twyla | March 08, 2009 at 12:53 PM
Heh, I figure that the term "Home" in "Medical Home" arose because the AAP thought the successful component of Thoughtful House is the word "House". Most people know you can't get Chanel No.5 from a street vendor.
As for autism not being a life-threatening condition-- it begins as a life-threatening condition. Autism is what many children end up with when the injuries didn't quite result in so-called SIDS. Aside from life-threatening seizures and allergies mentioned by others here, the underlying mitochondrial dysfunction which is ubiquitous among effected kids increases the risk of many types of cancer. On top of this, the MET gene mutation that Leavitt et al just discovered in association to autism mediates colon and GI cancers, to name a few. Rates of heart defects, asthma, glucose imbalances are high among autistic children. Then there's the ever-present threat from mainstream medicine. A twenty-year Finnish study of schizophrenics found that the life spans of individuals chronically exposed to neuroleptics-- which includes a very high percentage of kids with autism-- are typically cut short by 25 years.
Posted by: Gatogorra | March 08, 2009 at 12:19 PM
TJ, our oldest child had open-heart surgery at age 2, and a diagnosis of autism at age 3.
I have dealt with both.
I can say with some authority that autism is every bit as complex and life-threatening as the heart condition that required open-heart surgery.
My son wasn't gasping for breath with his heart problem. But he gasps for breath when he is upset, and can't remember how to breathe, and he gasped for breath when he was in terrible pain from celiac disease (undiagnosed by doctors, of course) and couldn't make it to the bathroom in time. And he gasped for breath between screams--his FOUR HOURS STRAIGHT OF SCREAMS, and this was a baby with severe heart problems who was too weak to cry--during his reaction to his 2-month vaccines.
Perhaps you've never seen a parent of an autistic child gasp for breath?
You obviously don't live in our world.
Posted by: Alison | March 08, 2009 at 12:04 PM
From TJ -
"This article is absolutely appalling, how dare you compare a complex life-threatening condition such as heart disease and the others to autism. You don't die from autism. Your child misbehaves while the other child lays their sick, gasping for breath, worrying about heart/lung transplants, surgeries, hospitalizations and more with a very decreased life span."
TJ, my son with autism has done all of these things you have mentioned. And they do die. What planet are YOU living on?
Posted by: For TJ | March 08, 2009 at 09:50 AM
TJ...chronic illness takes on many forms. And yes, you are correct in that Autism isn't associated with early death. But from my experience, my neice with Turner's syndrome, and the heart problems and shortened life that come with that diagnosis, will have a better quality of life than my nephew with autism. There is really no way to compare children with medical issues as to which is more important or severe. And for you to say that children with autism have "behavior" issues is reducing them in importance. That is not okay, either. And many children with autism have a multitude of medical problems associated with them that cause a great amount of pain for their lives, and the lives of their families. So what is better? A question better not asked.
Posted by: kathleen | March 08, 2009 at 09:29 AM
garbo- here are some other great side effects from singulair including suicidal behaviour. uggh.
Singulair
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Singulair:
Cough; dizziness; headache; indigestion; nausea; stomach upset or pain; stuffy nose; tiredness; trouble sleeping; weakness.
Seek medical attention right away if any of these SEVERE side effects occur when using Singulair:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); aggressive behavior; agitation; dark urine; fever; flu-like symptoms; hallucinations; irregular heartbeat; mental or mood changes; new or worsening wheezing or other breathing problems; numbness or tingling of hands or feet; seizures; severe or persistent stomach pain; severe sinus inflammation; suicidal thoughts or actions; swelling; unusual bruising or bleeding; upper respiratory tract infection; yellowing of the skin or eyes.
Posted by: an | March 08, 2009 at 08:08 AM
To, TJ- yes autism is a life threatening condition and it affects the lives of the whole family like any other life threatening condition. Do you have any idea how many of our kids die young from drowning and other accidents directly related to autism. And no my son is not misbehaving, he is reacting to pain that he cannot express and get relief from. You need to know what you are talking about before you open your mouth.
I am a mother of a young man with autism and have more than 30 yrs experience in medical work- the last several years in a chidrens hospital in the heart unit and I would definately rather see my son go through heart surgery than what he has and will go through because of autism.
Posted by: Sparkil2 | March 08, 2009 at 03:09 AM
To TJ: With respect, I assume you are not a parent of an autistic child, because otherwise you'd be aware of the life-threatening conditions that accompany autism across the board, such as seizures (remember John Travolta's autistic son just died of one) and epi-pen level allergies. Peace to all.
Posted by: Amanda Blinn | March 08, 2009 at 12:40 AM
This is terrific article! I am amazed at the grasp and insight the writer has. Just ignore the person who says you don't die from autism. They apparently haven't talked to many parents of those with autism.
Posted by: Heidi N | March 07, 2009 at 11:04 PM
TJ, My son does not have a tumor. But no one can tell me his life expectancy. I had always suspected there was something wrong with him physically but have had a dickens of a time getting anyone to help me figure it out. He can't gain weight, cannot digest his food, is chronically constipated, is so weak he coudln't walk until he was three, couldn't walk 50 yards without becoming exhausted...but when I called the big city children's hospital for help they told me "sorry, we don't treat autism". I didn't ask them to treat his autism - I asked for their help with the above list...yet, I was turned away. I had to figure it out for myself! My pediatrican had no clue - he told me he would order any test I wanted, but would not have the first clue what the results meant (he suggested I call Children's for help). The above conditions ARE AUTISM that result in those bad behaviors that are so intolerable to society. You cannot tell me that this generation of children will not have a shortened life span - colons riddled with inflammation and ulcers, pancreases and livers that don't function, confusion/dementation that cause our children to wander or run from us - ending up in woods or pools or worse.
I do not wish any illness on any family's child - but I remind you of this...the pediatric heart or cancer patient is welcomed with open arms at a hospital...not so with our children.
Posted by: Cathy | March 07, 2009 at 10:40 PM
"Surveys suggest that over half of all children with autism are being treated with Complimentary Alternative Medicine (CAM). CAM may be particularly challenging when a physician believes the treatment is not in the best interest of the child, often because of a lack of research or the potential for adverse effects."
Oh, yeah? What about the lack of research or the potential for adverse effects of the off-label drugs they prescribe children to mask the symptoms of "autism"? I'm sure that's all their "treatment" would be.
AAP + Pharma = even more $$$$$$
Posted by: Diane Frioni | March 07, 2009 at 10:38 PM
TJ- are you---(ThoJ-friend of epiwonk and orac)by chance?-you have that same subtle "family" resemblance....
Speaking of blog crashers earlier -- I think you are in the wrong spot. We discuss real medical issues that our children have. This comment you made:
"You don't die from autism. Your child misbehaves while the other child lays their sick, gasping for breath, worrying about heart/lung transplants, surgeries, hospitalizations and more with a very decreased life span."....
is just so ghastly wrong. Your word choice --"misbehaves"-- seems like an open invite for a duel of opinion -- and yours is just so inaccurate. Since you only offered a sick and twisted opinion, there is hardly any substance to "duel" with except comment on your utter ignorance and disregard for children who have chronic health issues and many who have acute behavioral and cognitive impairments that put them in danger on a daily basis.
Maybe both you and orac need to learn to comprehend better when you are reading as you missed the whole point....again.
Posted by: Teresa Conrick | March 07, 2009 at 10:25 PM
TJ, I think you are missing the point of what this article. They are saying that Autism IS a complex medical condition and should be listed a such. Explanation: for too long it has been listed simply as behavioral and this keeps Autism from being covered by private issue. But,, there are neurobiological reasons for the behaviors...which makes it a complex medical condition. And if you think Autism can't be a life threating condition.....ask any parent of an Autistic child if that child has ever disappeared and been found wandering through traffic. And too many of our kids have been killed by said traffic, or found dead in lakes. They don't do this because they are "misbehaving".
Posted by: Suzanne | March 07, 2009 at 10:22 PM
Well TJ, you've opened a can of worms now. Clearly you do not have someone in your life affected by autism. If you did, you would know that it is a complex, life-threatening condition. It involves the immune system, central nervous system and digestive system. Many children with autism also suffer from life-threatening seizures. Most children with autism cannot perceive danger - leaving them susceptible to drownings, being hit by a car, or inflicting serious injury on themselves with common household items. Some bang their heads against the wall all day. The only thing I found appalling about this article is that so many pediatricians are so unequipped to handle our childrens's conditions and medical needs. More often than not, they are just ignored. That doesn't happen very often to heart and cancer patients. Or is that not a comparison we are "allowed" to make either?
Posted by: chrissie | March 07, 2009 at 10:17 PM
TJ, until you've taken your child to a feeding clinic so he can learn how to eat, or made your house into a fortress so your child won't run out into traffic, you need to shut up. What did you do--watch one episode of a TV show with an autistic character, and then think you could pass judgment on Kelli Ann and the other moms on this site? Autism is every bit as complex as heart disease. Read Dr. Bryan Jepson's book (http://www.amazon.com/Changing-Course-Autism-Scientific-Physicians/dp/1591810612/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1236480910&sr=8-2) or spend a day with an autism family before you shoot your mouth off.
Posted by: Theresa | March 07, 2009 at 09:56 PM
So TJ says that autism is not a life-threatening condition?
Tell that to the parents of children with autism who wander into lakes and drown. Or the college professor whose son beat her to death. Or children who've died following seizures induced by hypervaccinosis.
Tell that to parents struggling with the myriad effects of children's mitochondrial dysfunctions. Or to parents of children whose immune systems are so out of whack that every food or chemical they ingest is a question mark.
Good heavens, the issue is not "misbehavior"; it's impacted colons lined with lesions and excruciating pain that many of these kids can't verbalize. Read, read, read, read, read, and then read some more -- these kids are ILL.
Posted by: nhokkanen | March 07, 2009 at 09:18 PM
What a great article! I like how straight forward you are :) When I think of the AAP, trust and open communication are far from any terms I would use to describe them or their experts on autism. Instead, I have sheer skepticism and lack of faith in them.
We should all have been given our own ten foot poles to keep them away from us when we started our families. Maybe then, vaccine injury would never have entered our babies' lives.
Cathy
Posted by: Cathy Jameson | March 07, 2009 at 08:40 PM
This article is absolutely appalling, how dare you compare a complex life-threatening condition such as heart disease and the others to autism. You don't die from autism. Your child misbehaves while the other child lays their sick, gasping for breath, worrying about heart/lung transplants, surgeries, hospitalizations and more with a very decreased life span. You worry about your child's future while the other parent worries if their child even has one. YOU need to get your basic facts correct and stop acting as if autism can be compared to life threatening conditions.
Posted by: TJ | March 07, 2009 at 05:54 PM
Why on earth would a bunch of folks who dont have a freakin clue be deciding what comprehensive care is for this population? The only people that are qualified to determine that is the parents whom have healed and recovered the children and doctors whom have recovered children. The AAP can certainly make an appointments with us parents and we will give them a full appointment time for thier money [unlike the 10 minutes they gave our children when they damaged them] Personally, I am willing to give them a bargain. I will only charge them $90.oo per half hour to teach them how to properly care for these children they have harmed.
Posted by: paula p proffit merckelous | March 07, 2009 at 05:54 PM
"Definitions: (8) MEDICAL HOME.—The term ‘‘medical home’’ means a concept or model of care delivery that includes an ongoing relationship between a provider and a patient, around-the-clock access to medical consultation, respect for a patient’s cultural and religious beliefs, and a comprehensive approach to care and coordination of care through providers and community services, as defined by the American Academy of Pediatrics."
These people need to wake up and understand that this model will not work because these people i.e., the pediatricians, do not follow the DAN! protocol.
Is this MEDICAL HOME model going to insist that peds go to DAN! conferences and get trained? If yes, then I am all for it. It isn't fun to have to travel 4 hours by road each way to get IV chelation for my son - to get the very mercury and aluminum out that these people put into my child!!
Posted by: AAP DAN! protocol? | March 07, 2009 at 04:48 PM
Our pediatrician, who is on the faculty at a prominent medical college and teaches Pediatrics, flat out told us he wasn't qualified to deal with our son's medical issues and he thought we were doing the right thing by seeing a specialist.
Posted by: Steve | March 07, 2009 at 04:13 PM
Our pediatrician has been no help in our recovery and moreover has exhibited absolutely no curiosity about it whatsoever. We went in to check if a cold had turned to bronchitis, she said the cough was fine -- that it was probably an allergic cough (despite the fact that I, too, had the same bad cold, which has been going around) and gave us free samples of pediatric Singulair to try with a chirpy promise to write a script if we liked it. An allergy drug. By Merck. That's being investigated by FDA for causing anxiety, among other things. Yeah, doc, good thinking there, that'd be GREAT for my mostly-recovered PDD/aspie son. Thanks for applying such thought to him as an individual. These are the people who want to be in charge? They don't have the first frikkin clue. They're literally so clueless that they don't even know what they don't know.
Posted by: Garbo | March 07, 2009 at 03:27 PM
Absolutely fascinating, Kelli Ann. Superb job. Your write up makes it clear how the AAP has produced a survey that unwittingly condemns itself, its physicians and its own recommendations.
The huge disconnect (50% getting CAM and 75% not trusting) is something they remain amazingly blind to.
They (the AAP and their kool-aid drinking physicians) just CAN'T be wrong. There MUST be something wrong with the parents, who need to be convinced of the efficacy of the medical home model.
Arrogrance
Hubris
God Complex
Megalomania
Words fail.
Posted by: David Taylor | March 07, 2009 at 03:05 PM
half the pediatricians in this country would be sued into bankruptcy if Congress hadn't given them immunity in vaccinating our children. Most don't even follow the CDC's warning of not vaccinating children who are sick or taking antibiodics. the AAP is a group of drug pushers. I'm sure they really want to help children BUT only a really uninformed parent would let these drug pushers guide a child's recovery. The AAP is in a hopeless conflict. DAN doctors should be a part of Durbin's bill, not the AAP. This survey and article should be distributed to every member of Congress and plastered all over Durbin's front door to his office. Thank you to Age of Autism and Generation Rescue for actually caring and taking action. Without you we would have no voice and no hope.
Posted by: John | March 07, 2009 at 10:41 AM
Great analysis, Kelli Ann! It is also a bit disheartening to see members of AAP actively trying to push vaccines on our blogs, Dr. Jay here recently on Dan's MMR/Mumps piece and then a Dr.Parikh was showing up on DK Huff Po's to try and muddy the waters last year after the Poling case and Dr. Healy's "don't turn your back on the susceptible group" statement, in which more evidence to vaccine-induced autism was presented to the world.
The condescending and uncaring attitude that many of these blog crahers exhibit shows a policy that they are all "hypmotized" by -- "must vaccinate ALL regardless of negative consequences". The "regardless of negative consequences" would be us and our children and we are scaring the hell out of them as we have the evidence of harm on paper, in research, in data, and living in our homes.
The "medical home model" is an attempt to stop the advancement of science on autism research and in recovering our children. Hell will freeze over before we will ever let that happen. Their are lives in the balance.
Posted by: Teresa Conrick | March 07, 2009 at 10:24 AM
This reminds me of the time I was in an IEP meeting and asked for an aide for my daughter, and the special ed. supervisor said they only provide aides for children with severe disabilities. I had come to expect that kind of cluelessness from our school district, but now it seems the vast majority of pediatricians are just as clueless. Scary! Our kids' lives are at stake here. We're lucky to have a really good pediatrician, but that is obviously not the norm.
Posted by: PhillyLisa | March 07, 2009 at 10:21 AM
Most pediatricians really don't have a clue. One conversation with mine regarding why I no longer was vaccinating was enough to scare the crap out of me about how little she knew. This was the practice I trusted to answer my vaccination questions. I will never go back. What really bothered me was not just how little she knew and the fact that she was quoting the studies the CDC had already labeled as seriously flawed but that it was not even a discussion. She talked at me and was very agitated. Her practices ignorance and lack of common sense made my kids sick. I could never trust them with their care again.
Posted by: kristin | March 07, 2009 at 10:14 AM
Upon receiving the full developmental assessment from the Children's Hospital; our ped. called us into his office and said, "Your son has PDD-NOS, that is Persuasive Developmental Disorder. What that means is, it's really hard to get Kyle to do things."
Really? You mean I can not 'persuade' him to not bang his head into me, or to talk, or to stop lining things up, or dropping things through his sight-line, or stop periodically exploding from various orifices....hmmm. Persuasive, yea, right - and this is the guy who is supposed to be in charge of my son's treatment. I don't think so.
If your child comes in contact with a mainstream pediatrician - quietly and calmly removed them from his presence, then run.
Kelly
Posted by: Kelly | March 07, 2009 at 09:31 AM
This is the crux of the entire problem:
"instead of focusing on “sensitivity, respect and open communication” (it hasn’t been working so far) I’d suggest you put “medical competency” and basic definitions of autism” on the top of any future “to do list”.
Until these two things are rectified, people will continue to vote with their feet.
Posted by: meg | March 07, 2009 at 09:09 AM
sure, let's have the fox guard the hen-house (medical home)!
Posted by: AutismDad | March 07, 2009 at 08:55 AM
My Harvard trained Pediatrician also a Harvard Med School faculty member, is the one who got us into this mess in the first place. The idea that I am supposed to take direction from him literally kills me. My husband cannot even articulate in words how angry he is with this man. My pediatrician never gets to see, treat or discuss my son again. Put him at the center of Nick's Autism treatment - it will be a cold day in hell before that happens.
Posted by: Alison MacNeil | March 07, 2009 at 07:48 AM
I have already received 2 requests to participate in this "program" included with a HIPAA form... no way! Rejected it twice and actually received a call from the peds office questioning why I haven't signed my consent form. LOL!! Like I would like for my state's AAP to have access to my kids medical records. Back in the early days I actually shared some of my DAN reports with them, but stopped before detoxing. I will say though, my pediatrician told me to continue to do what I am doing for my child because it has obviously made a difference... yes, he is almost completely RECOVERED and not by any help or guidance of their office. Thank God for all of our organizations educating families about biomedical treatments for ASD.
Posted by: Jackie Hines | March 07, 2009 at 07:44 AM